Re: Re:Suggestions

[Guest guest]

Bob,

Are you too a chiropractor?

For the group, Bob is a Trivita distributor and would love for you to order from him. AS YOU ALL KNOW, WE DO NOT AND WILL NOT ALLOW THE GROUP TO BE HIS OR ANYONE ELSE'S MARKETING PROGRAM!

Bob, I also wonder if you are a chiropractor? Your info on the C1 therapy sounds a whole lot like the full page ads we see for this daily.

The options Bob is presenting may be worth investigating-- but yes, they are VERY expensive. There are other whole food supplements and herbs that can do the same things- lower inflammation, rebalance the immune system, without putting you into a situation where you over-amp your immune system into more hyperactivity that will only make this auto-immune process even more dangerous.

Bob-- ONCE AGAIN-- NO ONE PAYS ANYONE-- ALL THE OWNERS AND MODERATORS OF THIS GROUP ARE VOLUNTEERS! Your insinuation that we choose not to do more (I'd love to know what your concept of more is) because of energy or cost-- is insulting. But that seems to be your program over the years. You get pissy when we won't let you market to our members.

Guys, we have alot of options. I've given my testimony on MSM Powder, but I DO NOT SELL MSM POWDER! I will refer you to places you can get it. ANYONE OF YOU CAN TYPE IN ANY OF THESE PRODUCTS AND FIND THEM FOR YOURSELF. YOU WILL GET THOUSANDS OF HITS FOR SITES- AND SOME SELL QUALITY PRODUCTS, SOME HAVE 'TWEAKED' THE HERBS AND YOU GET SNAKE OIL.

For me, when a person attacks verbally, emotionally or physically, as in the statement that this "group" won't do more because of cost (AGAIN-- DID YOU PAY TO BE A MEMBER-- NOPE, BECAUSE THIS IS A FREE SITE MODERATED BY PEOPLE WHO DO NOT GET PAID TO HELP YOU!!!) WORRIES ME.

Bob seems to forget that we too are very sick with sarcoidosis-- and yep, we don't have the energy to have to defend the way we protect all of you--- maybe it's the right direction, maybe not-- I can tell you all that what decisions are made in allowing various posts to come to you-- are made with the best intentions-- because we do get emails regularly that "have the cure!"

You all know you can type in "sarcoidosis" in your search-- and you will not only get thousands of hits-- you'll also get a side bar that tells you that someone can cure MS, Lupus, sarc-- and if you go there-- you're on a "mining" list that will have some interesting stuff get into your computer-- complete with viruses- the kind that wipe your computer out!

Use your own common sense, if the solution is going to be so cost prohibitive-- then it's not a solution. It's so very easy to get sucked into wanting to find the answer to a very nasty illness, that we will spend everything we have.

And yes the answer may be in natural whole food supplements, look at what is in these names that Bob has shared, and see what you can find in a good health food store-- you may be able to save some money.

We try our best,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, May 21, 2010 7:26:12 AMSubject: Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the

body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my

story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very

severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and

otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

[Guest guest]

Tracie,No I am not a Chiropractor. I gave you and a group a one year synopsis of what transpired using high quality supplements and Upper Cervical ChiropracTIC care. What I stated is facts. If I insulted anyone I apologize. Everyone makes their own decisions in life on how they are going to handle their personal situation. I chose the method that I did and It has been a good one for me. I shared the results and will leave it at that. If you think I am chasing a buck, sorry you feel this way, and unfortunately you really do not know who I am at all. Today the pain industry is extracting 50 billion dollars a year in pharmaceutical drugs from the average consumer and many people are on up to 7 medications that they take daily. These drugs are providing people with little or no hope,

while destroying body organs along the way, not to mention the countless side affects. These drugs are not free, in fact the are much more expensive then the nutrients that I can provide people. The reason that people do not complain of their cost is because their insurance companies or the government is paying for most of them. The nutraceutical seem expensive because one needs to reach in their own pocket to pay for it, so this becomes very real to them. We are a trapped society. So if a person wants to free them self from this type of bondage, it will cost them to do so. That is a personal decision that each person needs to make. I don't think me offering people scientifically proven nutraceutical alternatives that contain zero side affects, with no organ destruction; should be offensive. And the fact that I am consuming them everyday my self and I am living proof. People can say no or delete the messages as you have made all of them

aware of this in many of your posts. And as for all of you to know, I am on a fixed income and earning some extra money is a necessity for me to continue to exist, just like everyone who needs to live. As for the Upper Cervical ChiropracTIC that is a therapy that I under went during the past six weeks and am now continuing my treatment locally. It is an alternative, no drugs or invasive surgery is required, and for me it is working. Yes this all costs a lot of money. So maybe we should be working with foundations and other methods to see if they would sponsor individuals to take the treatment. We need to help people move forward not discourage them. There are billions of dollars in grants and we need to figure out how to get some of this money appropriated for these types of therapies. That is my point. The group should be working toward alternative medicine as the current medical treatments are not working. If money is the issue,

then lets work together and go get some. If you can point me in the right direction, I will send my testimony to any foundation that is willing to test the process and we need to get some volunteers to go through this process. Warm regards, Bob Casper To: Neurosarcoidosis Sent:

Fri, May 21, 2010 10:52:43 AMSubject: Re: Re:Suggestions

Bob,

Are you too a chiropractor?

For the group, Bob is a Trivita distributor and would love for you to order from him. AS YOU ALL KNOW, WE DO NOT AND WILL NOT ALLOW THE GROUP TO BE HIS OR ANYONE ELSE'S MARKETING PROGRAM!

Bob, I also wonder if you are a chiropractor? Your info on the C1 therapy sounds a whole lot like the full page ads we see for this daily.

The options Bob is presenting may be worth investigating- - but yes, they are VERY expensive. There are other whole food supplements and herbs that can do the same things- lower inflammation, rebalance the immune system, without putting you into a situation where you over-amp your immune system into more hyperactivity that will only make this auto-immune process even more dangerous.

Bob-- ONCE AGAIN-- NO ONE PAYS ANYONE-- ALL THE OWNERS AND MODERATORS OF THIS GROUP ARE VOLUNTEERS! Your insinuation that we choose not to do more (I'd love to know what your concept of more is) because of energy or cost-- is insulting. But that seems to be your program over the years. You get pissy when we won't let you market to our members.

Guys, we have alot of options. I've given my testimony on MSM Powder, but I DO NOT SELL MSM POWDER! I will refer you to places you can get it. ANYONE OF YOU CAN TYPE IN ANY OF THESE PRODUCTS AND FIND THEM FOR YOURSELF. YOU WILL GET THOUSANDS OF HITS FOR SITES- AND SOME SELL QUALITY PRODUCTS, SOME HAVE 'TWEAKED' THE HERBS AND YOU GET SNAKE OIL.

For me, when a person attacks verbally, emotionally or physically, as in the statement that this "group" won't do more because of cost (AGAIN-- DID YOU PAY TO BE A MEMBER-- NOPE, BECAUSE THIS IS A FREE SITE MODERATED BY PEOPLE WHO DO NOT GET PAID TO HELP YOU!!!) WORRIES ME.

Bob seems to forget that we too are very sick with sarcoidosis- - and yep, we don't have the energy to have to defend the way we protect all of you--- maybe it's the right direction, maybe not-- I can tell you all that what decisions are made in allowing various posts to come to you-- are made with the best intentions-- because we do get emails regularly that "have the cure!"

You all know you can type in "sarcoidosis" in your search-- and you will not only get thousands of hits-- you'll also get a side bar that tells you that someone can cure MS, Lupus, sarc-- and if you go there-- you're on a "mining" list that will have some interesting stuff get into your computer-- complete with viruses- the kind that wipe your computer out!

Use your own common sense, if the solution is going to be so cost prohibitive- - then it's not a solution. It's so very easy to get sucked into wanting to find the answer to a very nasty illness, that we will spend everything we have.

And yes the answer may be in natural whole food supplements, look at what is in these names that Bob has shared, and see what you can find in a good health food store-- you may be able to save some money.

We try our best,

Tracie

NS Co-owner/moderator

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 7:26:12 AMSubject: Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the

body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my

story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very

severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and

otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

[Guest guest]

AMEN! After over 35 years in nursing, I've seen more "miracle cures" than I could shake a stick at. When it doesn't work for someone, there is always an excuse--they didn't do something right, they didn't really believe in it, had bad vibes, whatever. Like Tracie suggested, investigate--with an open mind & closed wallet--then decide what you think is a reasonable path for you to take. Remember that there are no guarantees, whether using "conventional" medicine, herbals, homeopathy, other alternative treatments. Just as we are all affected differently by disease, sarc or any other disease, we are affected differently by therapies.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: tiodaat2001@...Date: Fri, 21 May 2010 10:52:43 -0700Subject: Re: Re:Suggestions

Bob,

Are you too a chiropractor?

For the group, Bob is a Trivita distributor and would love for you to order from him. AS YOU ALL KNOW, WE DO NOT AND WILL NOT ALLOW THE GROUP TO BE HIS OR ANYONE ELSE'S MARKETING PROGRAM!

Bob, I also wonder if you are a chiropractor? Your info on the C1 therapy sounds a whole lot like the full page ads we see for this daily.

The options Bob is presenting may be worth investigating-- but yes, they are VERY expensive. There are other whole food supplements and herbs that can do the same things- lower inflammation, rebalance the immune system, without putting you into a situation where you over-amp your immune system into more hyperactivity that will only make this auto-immune process even more dangerous.

Bob-- ONCE AGAIN-- NO ONE PAYS ANYONE-- ALL THE OWNERS AND MODERATORS OF THIS GROUP ARE VOLUNTEERS! Your insinuation that we choose not to do more (I'd love to know what your concept of more is) because of energy or cost-- is insulting. But that seems to be your program over the years. You get pissy when we won't let you market to our members.

Guys, we have alot of options. I've given my testimony on MSM Powder, but I DO NOT SELL MSM POWDER! I will refer you to places you can get it. ANYONE OF YOU CAN TYPE IN ANY OF THESE PRODUCTS AND FIND THEM FOR YOURSELF. YOU WILL GET THOUSANDS OF HITS FOR SITES- AND SOME SELL QUALITY PRODUCTS, SOME HAVE 'TWEAKED' THE HERBS AND YOU GET SNAKE OIL.

For me, when a person attacks verbally, emotionally or physically, as in the statement that this "group" won't do more because of cost (AGAIN-- DID YOU PAY TO BE A MEMBER-- NOPE, BECAUSE THIS IS A FREE SITE MODERATED BY PEOPLE WHO DO NOT GET PAID TO HELP YOU!!!) WORRIES ME.

Bob seems to forget that we too are very sick with sarcoidosis-- and yep, we don't have the energy to have to defend the way we protect all of you--- maybe it's the right direction, maybe not-- I can tell you all that what decisions are made in allowing various posts to come to you-- are made with the best intentions-- because we do get emails regularly that "have the cure!"

You all know you can type in "sarcoidosis" in your search-- and you will not only get thousands of hits-- you'll also get a side bar that tells you that someone can cure MS, Lupus, sarc-- and if you go there-- you're on a "mining" list that will have some interesting stuff get into your computer-- complete with viruses- the kind that wipe your computer out!

Use your own common sense, if the solution is going to be so cost prohibitive-- then it's not a solution. It's so very easy to get sucked into wanting to find the answer to a very nasty illness, that we will spend everything we have.

And yes the answer may be in natural whole food supplements, look at what is in these names that Bob has shared, and see what you can find in a good health food store-- you may be able to save some money.

We try our best,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, May 21, 2010 7:26:12 AMSubject: Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

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[Guest guest]

Bob, you are right-- we don't know who you are. and you nor anyone else on this site can use this group's member list to make a buck. It is against the rules of Yahoo Groups. We'd rather be able to continue to offer the support and the research that we're willing to do on behalf of our members than be banned from Yahoo Groups.

As far as the issue of high quality supplements and herbals-- I totally agree with you. I do think- and know first hand, that the answer to healing will be in nutrition and nutritional supplements and detoxification of our bodies so that our immune systems can learn to do what our immune system has been derailed from doing. Whether it is an underlying virus that has gone undiagnosed (I found out that I have 2 viruses that are interrupting my bodies ability to heal itself just last weekend).

The "leaky gut" syndrome that I talked about last week is a huge part of that. I will not at this time expand on the path that I'm on-- until I understand it more fully. To do so at this point would be wreckless of me-- and possibly endanger others. The products and detoxification process that I'm undergoing is one that has to be done with each patient individually, and set up and supported by highly trained professionals. As I gain more understanding-- I will share--

As for the wish that this group needs to find access to grants, etc for those who cannot afford or do not have insurance-- NONE OF US HAVE THAT EDUCATION OR KNOWLEDGE. I wish I did, but it's not even possible for me to research that direction-- I know my health limitations as well as what the other mods and Darlene are facing in their personal journey-- prohibit us from being able to spend more time trying to learn how or where to form a foundation that could do this.

That being said-- FSR, The Foundation for Sarcoidosis Research-- has paid staff that can and is in the process of building this kind of forum. They just started their 10th year and their wonderful brochure-- SARCOIDOSIS AND THE BODY uses much of the information that we put together in the early years of this site-- (and yes, we gave them permission ) You can order and contribute to their foundation --www.stopsarcoidosis.com. Sadly, they now want to charge other groups to be listed on their site-- and since we have no fees that we charge our members-- there is no money other than what each of us wants or can contribute-- so I don't know how soon we'll be dropped from their site as a sister site for those with NS.

Bob, if you have time-- maybe you can be the one to research and find out how to develop a grant that will access funds--- and share with all of us. We have more than 600 members that would love that info.

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, May 21, 2010 12:48:09 PMSubject: Re: Re:Suggestions

Tracie,No I am not a Chiropractor. I gave you and a group a one year synopsis of what transpired using high quality supplements and Upper Cervical ChiropracTIC care. What I stated is facts. If I insulted anyone I apologize. Everyone makes their own decisions in life on how they are going to handle their personal situation. I chose the method that I did and It has been a good one for me. I shared the results and will leave it at that. If you think I am chasing a buck, sorry you feel this way, and unfortunately you really do not know who I am at all. Today the pain industry is extracting 50 billion dollars a year in pharmaceutical drugs from the average consumer and many people are on up to 7 medications that they take daily. These drugs are providing people with little or no hope, while destroying body organs along the way, not to mention the countless side

affects. These drugs are not free, in fact the are much more expensive then the nutrients that I can provide people. The reason that people do not complain of their cost is because their insurance companies or the government is paying for most of them. The nutraceutical seem expensive because one needs to reach in their own pocket to pay for it, so this becomes very real to them. We are a trapped society. So if a person wants to free them self from this type of bondage, it will cost them to do so. That is a personal decision that each person needs to make. I don't think me offering people scientifically proven nutraceutical alternatives that contain zero side affects, with no organ destruction; should be offensive. And the fact that I am consuming them everyday my self and I am living proof. People can say no or delete the messages as you have made all of them aware of this in many of your posts. And as for all of you to know, I am on a

fixed income and earning some extra money is a necessity for me to continue to exist, just like everyone who needs to live. As for the Upper Cervical ChiropracTIC that is a therapy that I under went during the past six weeks and am now continuing my treatment locally. It is an alternative, no drugs or invasive surgery is required, and for me it is working. Yes this all costs a lot of money. So maybe we should be working with foundations and other methods to see if they would sponsor individuals to take the treatment. We need to help people move forward not discourage them. There are billions of dollars in grants and we need to figure out how to get some of this money appropriated for these types of therapies. That is my point. The group should be working toward alternative medicine as the current medical treatments are not working. If money is the issue, then lets work together and go get some. If you can point me in the right

direction, I will send my testimony to any foundation that is willing to test the process and we need to get some volunteers to go through this process. Warm regards, Bob Casper

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 10:52:43 AMSubject: Re: Re:Suggestions

Bob,

Are you too a chiropractor?

For the group, Bob is a Trivita distributor and would love for you to order from him. AS YOU ALL KNOW, WE DO NOT AND WILL NOT ALLOW THE GROUP TO BE HIS OR ANYONE ELSE'S MARKETING PROGRAM!

Bob, I also wonder if you are a chiropractor? Your info on the C1 therapy sounds a whole lot like the full page ads we see for this daily.

The options Bob is presenting may be worth investigating- - but yes, they are VERY expensive. There are other whole food supplements and herbs that can do the same things- lower inflammation, rebalance the immune system, without putting you into a situation where you over-amp your immune system into more hyperactivity that will only make this auto-immune process even more dangerous.

Bob-- ONCE AGAIN-- NO ONE PAYS ANYONE-- ALL THE OWNERS AND MODERATORS OF THIS GROUP ARE VOLUNTEERS! Your insinuation that we choose not to do more (I'd love to know what your concept of more is) because of energy or cost-- is insulting. But that seems to be your program over the years. You get pissy when we won't let you market to our members.

Guys, we have alot of options. I've given my testimony on MSM Powder, but I DO NOT SELL MSM POWDER! I will refer you to places you can get it. ANYONE OF YOU CAN TYPE IN ANY OF THESE PRODUCTS AND FIND THEM FOR YOURSELF. YOU WILL GET THOUSANDS OF HITS FOR SITES- AND SOME SELL QUALITY PRODUCTS, SOME HAVE 'TWEAKED' THE HERBS AND YOU GET SNAKE OIL.

For me, when a person attacks verbally, emotionally or physically, as in the statement that this "group" won't do more because of cost (AGAIN-- DID YOU PAY TO BE A MEMBER-- NOPE, BECAUSE THIS IS A FREE SITE MODERATED BY PEOPLE WHO DO NOT GET PAID TO HELP YOU!!!) WORRIES ME.

Bob seems to forget that we too are very sick with sarcoidosis- - and yep, we don't have the energy to have to defend the way we protect all of you--- maybe it's the right direction, maybe not-- I can tell you all that what decisions are made in allowing various posts to come to you-- are made with the best intentions-- because we do get emails regularly that "have the cure!"

You all know you can type in "sarcoidosis" in your search-- and you will not only get thousands of hits-- you'll also get a side bar that tells you that someone can cure MS, Lupus, sarc-- and if you go there-- you're on a "mining" list that will have some interesting stuff get into your computer-- complete with viruses- the kind that wipe your computer out!

Use your own common sense, if the solution is going to be so cost prohibitive- - then it's not a solution. It's so very easy to get sucked into wanting to find the answer to a very nasty illness, that we will spend everything we have.

And yes the answer may be in natural whole food supplements, look at what is in these names that Bob has shared, and see what you can find in a good health food store-- you may be able to save some money.

We try our best,

Tracie

NS Co-owner/moderator

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 7:26:12 AMSubject: Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the

body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my

story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very

severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and

otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

[Guest guest]



Tracie

I for one respect your advise. I read and question and educate myself with the help of your postings. I thank you for being there for all of us even through sickness yourself.

Speaking as a volunteer, I am on the Board for the southwestern District of Wisconsin ADRC (Aging and Disability Resource Center) Board. I feel I am helping as you do. I Know I am helping and I hope you do too.

Thank you for this site and your knowledge and willingness to expound on the matters.

Take Care and Know you and the other Moderators are loved and respected.

Jackie

Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

[Guest guest]

Amen to that, Tracie!! I don't know what we'd do without our support group here!! L. -Maye (Baltimore)To: Neurosarcoidosis Sent: Fri, May 21, 2010 6:54:33 PMSubject: Re:

Re:Suggestions

Bob, you are right-- we don't know who you are. and you nor anyone else on this site can use this group's member list to make a buck. It is against the rules of Yahoo Groups. We'd rather be able to continue to offer the support and the research that we're willing to do on behalf of our members than be banned from Yahoo Groups.

As far as the issue of high quality supplements and herbals-- I totally agree with you. I do think- and know first hand, that the answer to healing will be in nutrition and nutritional supplements and detoxification of our bodies so that our immune systems can learn to do what our immune system has been derailed from doing. Whether it is an underlying virus that has gone undiagnosed (I found out that I have 2 viruses that are interrupting my bodies ability to heal itself just last weekend).

The "leaky gut" syndrome that I talked about last week is a huge part of that. I will not at this time expand on the path that I'm on-- until I understand it more fully. To do so at this point would be wreckless of me-- and possibly endanger others. The products and detoxification process that I'm undergoing is one that has to be done with each patient individually, and set up and supported by highly trained professionals. As I gain more understanding- - I will share--

As for the wish that this group needs to find access to grants, etc for those who cannot afford or do not have insurance-- NONE OF US HAVE THAT EDUCATION OR KNOWLEDGE. I wish I did, but it's not even possible for me to research that direction-- I know my health limitations as well as what the other mods and Darlene are facing in their personal journey-- prohibit us from being able to spend more time trying to learn how or where to form a foundation that could do this.

That being said-- FSR, The Foundation for Sarcoidosis Research-- has paid staff that can and is in the process of building this kind of forum. They just started their 10th year and their wonderful brochure-- SARCOIDOSIS AND THE BODY uses much of the information that we put together in the early years of this site-- (and yes, we gave them permission ) You can order and contribute to their foundation --www.stopsarcoidos is.com. Sadly, they now want to charge other groups to be listed on their site-- and since we have no fees that we charge our members-- there is no money other than what each of us wants or can contribute-- so I don't know how soon we'll be dropped from their site as a sister site for those with NS.

Bob, if you have time-- maybe you can be the one to research and find out how to develop a grant that will access funds--- and share with all of us. We have more than 600 members that would love that info.

Tracie

NS Co-owner/moderator

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 12:48:09 PMSubject: Re: Re:Suggestions

Tracie,No I am not a Chiropractor. I gave you and a group a one year synopsis of what transpired using high quality supplements and Upper Cervical ChiropracTIC care. What I stated is facts. If I insulted anyone I apologize. Everyone makes their own decisions in life on how they are going to handle their personal situation. I chose the method that I did and It has been a good one for me. I shared the results and will leave it at that. If you think I am chasing a buck, sorry you feel this way, and unfortunately you really do not know who I am at all. Today the pain industry is extracting 50 billion dollars a year in pharmaceutical drugs from the average consumer and many people are on up to 7 medications that they take daily. These drugs are providing people with little or no hope, while destroying body organs along the way, not to mention the countless side

affects. These drugs are not free, in fact the are much more expensive then the nutrients that I can provide people. The reason that people do not complain of their cost is because their insurance companies or the government is paying for most of them. The nutraceutical seem expensive because one needs to reach in their own pocket to pay for it, so this becomes very real to them. We are a trapped society. So if a person wants to free them self from this type of bondage, it will cost them to do so. That is a personal decision that each person needs to make. I don't think me offering people scientifically proven nutraceutical alternatives that contain zero side affects, with no organ destruction; should be offensive. And the fact that I am consuming them everyday my self and I am living proof. People can say no or delete the messages as you have made all of them aware of this in many of your posts. And as for all of you to know, I am on a

fixed income and earning some extra money is a necessity for me to continue to exist, just like everyone who needs to live. As for the Upper Cervical ChiropracTIC that is a therapy that I under went during the past six weeks and am now continuing my treatment locally. It is an alternative, no drugs or invasive surgery is required, and for me it is working. Yes this all costs a lot of money. So maybe we should be working with foundations and other methods to see if they would sponsor individuals to take the treatment. We need to help people move forward not discourage them. There are billions of dollars in grants and we need to figure out how to get some of this money appropriated for these types of therapies. That is my point. The group should be working toward alternative medicine as the current medical treatments are not working. If money is the issue, then lets work together and go get some. If you can point me in the right

direction, I will send my testimony to any foundation that is willing to test the process and we need to get some volunteers to go through this process. Warm regards, Bob Casper

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 10:52:43 AMSubject: Re: Re:Suggestions

Bob,

Are you too a chiropractor?

For the group, Bob is a Trivita distributor and would love for you to order from him. AS YOU ALL KNOW, WE DO NOT AND WILL NOT ALLOW THE GROUP TO BE HIS OR ANYONE ELSE'S MARKETING PROGRAM!

Bob, I also wonder if you are a chiropractor? Your info on the C1 therapy sounds a whole lot like the full page ads we see for this daily.

The options Bob is presenting may be worth investigating- - but yes, they are VERY expensive. There are other whole food supplements and herbs that can do the same things- lower inflammation, rebalance the immune system, without putting you into a situation where you over-amp your immune system into more hyperactivity that will only make this auto-immune process even more dangerous.

Bob-- ONCE AGAIN-- NO ONE PAYS ANYONE-- ALL THE OWNERS AND MODERATORS OF THIS GROUP ARE VOLUNTEERS! Your insinuation that we choose not to do more (I'd love to know what your concept of more is) because of energy or cost-- is insulting. But that seems to be your program over the years. You get pissy when we won't let you market to our members.

Guys, we have alot of options. I've given my testimony on MSM Powder, but I DO NOT SELL MSM POWDER! I will refer you to places you can get it. ANYONE OF YOU CAN TYPE IN ANY OF THESE PRODUCTS AND FIND THEM FOR YOURSELF. YOU WILL GET THOUSANDS OF HITS FOR SITES- AND SOME SELL QUALITY PRODUCTS, SOME HAVE 'TWEAKED' THE HERBS AND YOU GET SNAKE OIL.

For me, when a person attacks verbally, emotionally or physically, as in the statement that this "group" won't do more because of cost (AGAIN-- DID YOU PAY TO BE A MEMBER-- NOPE, BECAUSE THIS IS A FREE SITE MODERATED BY PEOPLE WHO DO NOT GET PAID TO HELP YOU!!!) WORRIES ME.

Bob seems to forget that we too are very sick with sarcoidosis- - and yep, we don't have the energy to have to defend the way we protect all of you--- maybe it's the right direction, maybe not-- I can tell you all that what decisions are made in allowing various posts to come to you-- are made with the best intentions-- because we do get emails regularly that "have the cure!"

You all know you can type in "sarcoidosis" in your search-- and you will not only get thousands of hits-- you'll also get a side bar that tells you that someone can cure MS, Lupus, sarc-- and if you go there-- you're on a "mining" list that will have some interesting stuff get into your computer-- complete with viruses- the kind that wipe your computer out!

Use your own common sense, if the solution is going to be so cost prohibitive- - then it's not a solution. It's so very easy to get sucked into wanting to find the answer to a very nasty illness, that we will spend everything we have.

And yes the answer may be in natural whole food supplements, look at what is in these names that Bob has shared, and see what you can find in a good health food store-- you may be able to save some money.

We try our best,

Tracie

NS Co-owner/moderator

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 7:26:12 AMSubject: Re:Suggestions

Dear Darrin, You need to take your medical matters into your own hands. Too many of us rely on doctors that really do not have any more answers then you do. They too are learning as you go through your disease. I am not putting them down, or taking away from their expertise, but they can only help you as they learn how to deal with your symptoms as they learn, are provided new and up to date information, and as the pharmaceutical companies provide more drug therapies to curtail the symptoms. No thing that is provided for us are cures, they are therapies, that only curtail the symptoms. Healing comes from the

body, when put in a state where it can heal itself. Therefore, you can do with it what you want... I would hope and pray that you would do your own investigation and seek other health and wellness alternatives. There are other avenues that this group can take, but many choose not to because of cost and effort. The cost is your life, and each person needs to determine what their life is worth to them. I know how difficult it is to over come the challenges of Neurosarcoidosis when you just don't feel good 24 x 7 365 days a year. But there is one thing that I know and that is this. You are the only one who really cares about you! If you do not take the initiative to get yourself better, no one will do it for you. It is that simple... so here is my

story...

Hello all, it has been a while since I posted to the group. For those of you who do not know me, I have suffered from Neurosarcoidosis since 1995. Was diagnosed having Sarcoidosis in 1996 after removal of the middle right lobe in my lung and from there moving forward went through a battery of tests and finally in 1998 was diagnosed with Neurosarcoidosis.

It was not until 2005 that the Neurosarcoidosis took its toll and I was unable to control the symptoms, and remain cognitive for any period of time. I was hospitalize and in quarantine for a week with infusions of 120 mg of prednisone to attempt to control the process.

Needless to say during this 16 year process my body went through all kinds of contortions, muscle, joint stiffness and pain, massive headaches, loss of cognitive thinking and the like. Finally in October of 2005 SSDI awarded me disability, but needed to fight my company through all of 2005 to receive disability from them.

As you are all aware of if they can not see it, you don’t have it. Well finally through many spinal taps, the evidence of my Neurosarcoidosis shows up in my protein count and I was awarded long term disability.

During the following years, and after trying every drug available, I continued to lived with the pain and settled in on my regiment of 20 mg of prednisone daily and 24 Ibuprofen pills a day.

Well a little over a year ago; I was approach by a friend about trying a new supplement that is a high potent antioxidant, Nopalea. It is derived from the nopal cactus in Northern Mexico and Southern Arizona. Along with this I was introduced to another supplement by the name of Adaptogen 10 plus. Both of these supplements are provided by a nutraceutical company in sdale Arizona, Trivita. With the use of these two products my pain is all but gone.

These products were formulated to reduce and in many cases eliminate inflammation in the body. Because of our autoimmune disorder our bodies are plagued with vast quantities of chronic inflammation. In fact our immune system is completely out of control, causing our bodies to be inflamed and in constant pain as it is attempting to relieve our Neurosarcoidosis condition.

Because of my inflamed condition; the ability for these supplements to take control and to alleviate my chronic inflammation condition, required me to consume 5 ounces of these products daily (5 times greater then the recommended dosage) for over a month before the supplements started to overtake the inflammation, allowing my body to go back to a normal state.

In February of 2010 I was told about another treatment. That might be able to help out my overall health situation, called Upper Cervical ChiropracTIC. This deals specifically with the C1 and C2 vertebra in your upper neck. These two vertebra are not physically connected to the rest of the spine, but are connected by ligaments and muscle.

About 100 years ago, it was discovered that this is where the brain stem enters the body and allows your nervous system to communicate with all of your body parts. There are literally millions of nerves that leave the brain stem, traversing throughout the body providing the nutrients, blood flow, and stimuli needed for the body to function and repair itself.

What was discovered is that the C1 and C2 vertebra can become misaligned due to physical or emotional trauma, stress, or through inflammatory conditions taking place in the body. If the C1 and C2 become out of alignment, then the brain stem nervous system becomes impinged (pinched) and the signals going throughout your body become interrupted and the normal healing and repair process is inhibited and sometimes completely cut off.

Doing further investigation on this matter, I decided to see an Upper Cervical ChiropracTIC specialist in South Carolina. These doctors specialize in properly aligning the C1 and C2 vertebra so that any impingements are alleviated. I have been on the treatment for six weeks now and it has done remarkable things for me. My headaches are gone. Since about two weeks into the treatment my head aches have disappeared. My body is getting stronger and I am losing weight even though I am still on 19 mg of prednisone daily. Next week I will be reducing my prednisone intake to 18 mg daily and will tail off 1 mg each week until I no longer need to take the prednisone.

Upper Cervical ChiropracTIC Specialist do not believe in constant adjustments. What they believe in is to get the C1 and C2 in alignment, and then monitor your brain stem for impingements. They monitor this through the use of a high tech scanner using heat as a measurement of how well the nerves in your spinal column are performing. Heat means that the blood flow is working normally and properly. Cold spots or lack of heat means that there are impingements and that the flow of nutrients and data transfer throughout the nervous system is being impinged and is preventing the nervous system from working properly.

During the first 3 weeks, I was adjusted 5 times. Since then, no adjustments have been necessary. As I mentioned, my headaches are gone, I am getting stronger every day, and my recovery time is days not weeks.

What I mean by recovery time is this, whenever I use to bend over, to pick weeds, vacuum, or due minor chores, my body would be in pain for days if not weeks. Since using the supplements and going through the Upper Cervical ChiropracTIC therapy, my recovery time is sometime hours and not more than a couple of days.

I write this, because I do believe that there is hope for you. I have had all but written off my ability to have some level of a normal life. I now believe that I too can participate once again with the living. I am now doing things that I have not been able to do for years.

So in conclusion, I would recommend that you start a supplement regiment using the Nopalea and the Adaptogen 10 Plus from Trivita. I also would recommend that you find an Upper Cervical ChiropracTIC doctor as close to you as possible to find out if you have any impingements at the C1 and C2 vertebra.

It was amazing; I met people from all walks of life at the clinic. We all had one thing in common and that was we had no hope, as the medical profession had told each and every one of us that we were stuck with our fate and there was nothing that modern medical science could do for us.

On the other hand the Upper Cervical ChiropracTIC clinic said this. The body was made to heal itself. If given the proper nutrients and nervous system function, it can and it will heal itself. As Upper Cervical ChiropracTIC doctors, it is our mission to align your nervous system so that it can operate at the optimum peak performance that God intended it to do.

What we do is align your C1 and C2 vertebra, which provides your body the ability to optimally heal and take care of itself. Once you are properly aligned, you are then monitored to make sure that you are remaining in alignment. Our goal is not to readjust unless we have valid evidence that your nerves are impinged and an adjustment is needed to free up this impingement. The ultimate goal is that your body would be strong enough to realign itself by using the muscles and ligaments in your neck to self align.

By using the supplements that I am taking and by keeping my nervous system in alignment, my body is responding wonderfully. I am feeling stronger everyday, my neuropapthy in my right leg is going away and I am getting feeling back in areas of my body that I thought that I had lost forever. As I said this has been a slow recovery I am a year into the process and everyday I am getting better. I do not know if I will plateau, but if I do, that is ok, because I am 500% better then I was a year ago.

Knowing all of this now, I am on the road to a better quality of life. Will I become healed from my Neurosarcoidosis, I do not know. However, I do know this, my body is responding very favorably and I am feeling better than I have in 16 years.

I recommend that you investigate the information that I am providing you. If you ignore what I am telling you, it will saddened me.

The question I will ask you is what I had to ask myself. What if all of this works and I can once again live a normal life. Is it worth the effort to find out; I decided it was, and now I am reaping the rewards of my efforts.

As becoming ill with Neurosarcoidosis was a journey, getting back to wellness is also a journey and will not happen overnight. I hope that all of you who read this will consider this option for yourself. It has been over a year for me to reach the level that I am at. This has not been an instant recovery; it is a day by day process. Health comes by practicing healthy habits daily, one day at a time.

I personally believe in a higher being. I believe in God and Jesus as my Lord and savior. I know that not all of you have the same believe system as I do and that is ok, however I tell you of my faith as it was this faith that allowed me to move forward. This belief gives me the strength to trust that God wants a better life for me and that He wants me to be healed.

In the bible in the book of in chapter 10 verse 10 Jesus said; the thief comes only to steal and kill and destroy. I come that you may have life and have it more abundantly. I choose to believe this so I moved forward to look for ways to enjoy the abundant life.

I hope that this post brings encouragement to all of you. May God bless everyone who reads this and gives you the abundant life as He is giving me.Warm regards, Bob Casper

Suggestions?...

From:

Darrin Vernier ...Add to Contacts

To:

"neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very

severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and

otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin