Good Morning

June 15, 2006

In a message dated 6/15/06 5:27:59 P.M. Eastern Daylight Time,

richvank@... writes:

I have been on the prescription wheel for a long time.

I

> live in Delaware and can't seem to find a doctor here that has a

clue.

> I seen one and after telling him NO DRUGS, he wrote more scripts.

I

> threw them out.

> I take 400 mgs of Mag in the morning and 400 about 1pm but the

> exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

> anyone help ??

>

> J>>

Hi J,

Not that there are any guarantees, but have you tried accupuncture? If you

live in nothern DE you can contact Wiper at (302) 994-6838. In

addition, I believe his wife, Dianne Newman is doing some herbal and

nutritional

work with CFIDS/Fibro people.

Good luck,

Maxine

June 15, 2006

I don't know if this will help, but Jill wrote about a doc in Georgia that has a

clinic that doesn't use drugs of any kind. You might want to give them a call.

I myself am going to work with him on Lyme and see where it goes. I, too, have

developed severe allergies to most drugs and dyes over the past couple of years.

Very strange to have systems break down so. Anyway the # for the clinic is

678-990-5401. I'm in California and will be working with them long distance.

Maybe that would work for you. Good Luck!

Mercuria <mercuria@...> wrote:

On Jun 15, 2006, at 7:13 AM, Jay wrote:

> I'm too the end of my rope and hope someone in here may help. I know I

> have CFIDS and Fibro. I have walked away from the medical community

> alltogether. I'm severly allergic to all prescription drugs now. I

> live in chronic pain not only from the Fibro and CF but I survived a

> car accident 3 years ago.

> It has all been a guessing game to keep me from being so suicidal and

> why. All the doctors wanted to was prescribe more. What I did figure

> out was not only use my Cpap but use magnesium 2xs a day. Without it I

> get nuts, really nuts. I went off all meds 2 months ago after weaning

> for weeks. I have been on the prescription wheel for a long time. I

> live in Delaware and can't seem to find a doctor here that has a clue.

> I seen one and after telling him NO DRUGS, he wrote more scripts. I

> threw them out.

> I take 400 mgs of Mag in the morning and 400 about 1pm but the

> exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

> anyone help ??

Magnesium's co-factor is Vitamin B6. If you take each of your mag

doses with 100 mg of B6, you might get even better effect from it. B6

will help your muscle and nerve tissue begin to repair. Methyl B12 is

another important nutrient for this. Fortunately, neither is expensive.

I also had good results with CPAP and mag. But my fibro also

responded to two other things: getting my silent thyroid disorder

treated (this will involve another prescription drug -- possibly

Armour thyroid or cytomel), and discovering that I had a food allergy

to soy. A LOT of fibro patients have food sensitivities: there are

elimination diets all over the web that will guide you in identifying

possible culprits in your own diet. Wheat, eggs, nightshades

(tomatoes, potatoes, peppers) and soy are all common allergens that

can cause joint inflammation. I eat soy and just seize up for about

24-48 hours.

The odds that you have a messed-up thyroid are high -- and higher

since the car accident, especially if you had whiplash. Car accidents

are notorious fibro triggers, and whiplash damage to the thyroid is

one of the major reasons. If you can't find a doctor who will treat

silent thyroid (they're hard to find), a possible interim home

solution might be virgin coconut oil, which contains various EFAs

that support thyroid performance. The best stuff is at

www.tropicaltraditions.com.

We talk a lot about glutathione on this list, too. You might get a

small bottle of oral glutathione and start taking a bit each day. It

will help with inflammation, detox, and tissue healing; and many of

us have had much-improved energy from it. Another form of glutathione

is a whey powder called RenewPro. I put this and a fat spoonful of

coconut oil in my breakfast smoothie every morning.

There's a lot of stuff to try. Not all of it will work, of course,

but the key is to keep on keeping on. I'm in my third decade with

this monster, and have been just as miserable as you describe. And I

got better -- mostly by just trying everything that made sense, and

quite a few things that didn't.

Sara

June 15, 2006

I'm also using HBOT and the clinic I mentioned uses them, too. Thanks Jill.

Kent MacLaughlin <mac@...> wrote: Have you checked into Hyper Baric

Oxygen therapy?

___________________________________

Kent

- É×ÈÕÓ

____________________________________

Good Morning

I'm too the end of my rope and hope someone in here may help. I know I

have CFIDS and Fibro. I have walked away from the medical community

alltogether. I'm severly allergic to all prescription drugs now. I

live in chronic pain not only from the Fibro and CF but I survived a

car accident 3 years ago.

It has all been a guessing game to keep me from being so suicidal and

why. All the doctors wanted to was prescribe more. What I did figure

out was not only use my Cpap but use magnesium 2xs a day. Without it I

get nuts, really nuts. I went off all meds 2 months ago after weaning

for weeks. I have been on the prescription wheel for a long time. I

live in Delaware and can't seem to find a doctor here that has a clue.

I seen one and after telling him NO DRUGS, he wrote more scripts. I

threw them out.

I take 400 mgs of Mag in the morning and 400 about 1pm but the

exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

anyone help ??

J

June 15, 2006

Hi Jay,

I am so sorry to hear what you have been put through.

So many scummy doctors just slap a CFS label on you and chuck drugs

at you and they think that is all they have to do, its disgusting!

But dont worry, you have come to a very good place.

Its a disgrace that too many arrogant doctors choose think that this

illness is a mental illness even in the face of all the scientific

proof otherwise, but they are wrong it is not psychological, its

entirely physical and organic.

I know this type of illness can have emotional and mental

consequences, but these symptoms only come secondarily, in other

words you get them as a result of what ails you, but they are not the

cause of it.

There are lots of things to be done to help you that dont involve

drugs, activity management is the first one that comes to mind seeing

as you are suffering from post-exertional illness and exercise

intolerance; just type 'Pacing CFS' into your search engine you will

start to get some good websites coming up with any luck, pacing

really helps and its free and healthy.

I would suggest that to begin with you could just keep reading some

of the posts here and all will become much clearer to you soon.

Then when you find something that interests you in particular, type

the word in the search box above the page, and it will bring up all

the posts on that subject.

This site is a goldmine of information about experimental and

alternative ways to treat what is causing your symptoms.

good luck and good health to you

best wishes

..

>

> I'm too the end of my rope and hope someone in here may help. I

know I

> have CFIDS and Fibro. I have walked away from the medical community

> alltogether. I'm severly allergic to all prescription drugs now. I

> live in chronic pain not only from the Fibro and CF but I survived

a

> car accident 3 years ago.

> It has all been a guessing game to keep me from being so suicidal

and

> why. All the doctors wanted to was prescribe more. What I did

figure

> out was not only use my Cpap but use magnesium 2xs a day. Without

it I

> get nuts, really nuts. I went off all meds 2 months ago after

weaning

> for weeks. I have been on the prescription wheel for a long time. I

> live in Delaware and can't seem to find a doctor here that has a

clue.

> I seen one and after telling him NO DRUGS, he wrote more scripts. I

> threw them out.

> I take 400 mgs of Mag in the morning and 400 about 1pm but the

> exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

> anyone help ??

>

> J

>

June 15, 2006

Hi, Jay.

I wonder if you have tried Epsom salt baths for your pain. That may

help. A couple of cups of Epsom salts in water as warm as you can

tolerate, for 20 minutes or so. Some of the magnesium sulfate will

pass through your skin. The sulfate is good for the cartilage in

your joints, and the magnesium is good for muscles and nerves.

Rich

>

> I'm too the end of my rope and hope someone in here may help. I

know I

> have CFIDS and Fibro. I have walked away from the medical

community

> alltogether. I'm severly allergic to all prescription drugs now. I

> live in chronic pain not only from the Fibro and CF but I survived

a

> car accident 3 years ago.

> It has all been a guessing game to keep me from being so suicidal

and

> why. All the doctors wanted to was prescribe more. What I did

figure

> out was not only use my Cpap but use magnesium 2xs a day. Without

it I

> get nuts, really nuts. I went off all meds 2 months ago after

weaning

> for weeks. I have been on the prescription wheel for a long time.

I

> live in Delaware and can't seem to find a doctor here that has a

clue.

> I seen one and after telling him NO DRUGS, he wrote more scripts.

I

> threw them out.

> I take 400 mgs of Mag in the morning and 400 about 1pm but the

> exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

> anyone help ??

>

> J

>

June 15, 2006

Hi Jay,

If you want to avoid the drug route you could try chiropractic and

acupuncture. Especially with a car accident and whiplash it may provide

significant relief. And particularly with fibro there are many physical

therapy modalities, ultrasound, massage that can be very helpful. And

acupuncture can help pain, headaches and even energy to some degree. Hot

tubs or jacuzzis can help, but just a bath with Epsom salt can be very good

at relieving pain and stiffness.

There are many things that can help so just keep trying.

Hang in there,

Jill

June 15, 2006

Jay,

I know you have received some great posts to this message. Here are a

few more specific ideas to try:

Help for your chronic pain - this could be detox failure of some sort.

You need to bind up the worst of the toxins, solve intestinal dysbiosis

as soon as possible, balance the liver, promote detoxification, and then

start killing the remaining bad bugs. All the while supporting with key

nutrients. Some good natural toxin binders are Modifilan, Chlorella,

Activated Charcoal, Bendonite Clay (Sonne's #7 is good), and Klamath

Blue Green Algae. Also some people like Spirulina. Most of these are

best 30 minutes before a meal, that helps them soak up biotoxins when

they are released in the bile. But in a crisis, you can take any of

these any time, except for chlorella (which has a lot of energizing B12

and should not be taken at night unless you want to stay awake half the

night).

The severe anxiety - this is probably your body's response to the

biotoxin overload from the combination of depleted glutathione and toxic

infections or toxins in your environment. Probably the toxins get in

the nerves and are triggering anxiety responses. Magnesium is certainly

helpful, and also you can re-train your neurological reactions to the

pain and toxins. You can learn to relax even during pain, to sleep

during discomfort and anxiety, etc. But this will take some time and

effort, you must re-condition some semi-autonomic responses.

Visualization exercises and binaural beat meditations can help. Also

you can explore various herbals to help with the anxiety response. Kava

kava is very good for some people for this, as good as some prescription

drugs. Organic or German Chamomile can be sedating, there are many

others. Also be sure to get enough calcium along with the magnesium.

And one of the best treatments is a hot pack, on the chest or around the

back of the neck, very relaxing even when in pain.

The loss of energy in the PM - this is probably when you use up your

cortisol, your adrenals are crashing. May be caused by detox overload,

detox systems require the adrenals. Anyway this is very common with

adrenal exhaustion, I have this also. If you support your adrenals in

the morning, they will last longer in the afternoon. Pre-emptive

resting can also help, rest an hour once in the mid to late morning, for

example, that will extend the adrenal endurance later. Or you can take

adrenal supplements. Salt/c, licorice, many others can be very helpful.

--Kurt

Good Morning

I'm too the end of my rope and hope someone in here may help. I know I

have CFIDS and Fibro. I have walked away from the medical community

alltogether. I'm severly allergic to all prescription drugs now. I

live in chronic pain not only from the Fibro and CF but I survived a

car accident 3 years ago.

It has all been a guessing game to keep me from being so suicidal and

why. All the doctors wanted to was prescribe more. What I did figure

out was not only use my Cpap but use magnesium 2xs a day. Without it I

get nuts, really nuts. I went off all meds 2 months ago after weaning

for weeks. I have been on the prescription wheel for a long time. I

live in Delaware and can't seem to find a doctor here that has a clue.

I seen one and after telling him NO DRUGS, he wrote more scripts. I

threw them out.

I take 400 mgs of Mag in the morning and 400 about 1pm but the

exhaustion hits me so hard by 2 I'm done. I got to lay down. Can

anyone help ??

J

August 13, 2006

Well, Im glad you have a good PCP, so did I and half way through my treatment, I fired my gastro cuz he was one who didnt like it that I was as educated about this disease as he was and in the issue of my needing procrit, I was more educated than he.. When I needed it, he just wanted to reduce my Riba dose instead, I DEMANDED procrit, first he said that my insurance probably wouldnt cover it, well it did,, then when it came to it, he didnt know HOW MUCH to write the script for, I had to tell him,, lol,, Please do not continue to drink hon,, it will make your chances of reaching SVR much less and will cause the virus to replicate TWICE as fast and therefore make the treatment unable to keep up with it.. leecuate <leecuate@...> wrote: I thought that I would regret my post last night but I don't.I hate my gastro but my PCP is great. I see him Tuesday. I think that I can go through this with his support. I had my biopsy two weeks ago Thursday and my Gastro just had the courtesy of having her receptionist call my Friday to say that I have some scarring and can start treatment as soon as the medications come in the mail ( blue cross ). I haven't had anything to drink since last May but last night I said F-it. I am ready to start treatment. My goal is to beat this before my 50.. Sorry about all the spanish last night, I had just come from a party where everyone was speaking

spanish.Jackie

January 26, 2007

Get copies yourself and take them to the other doctor.

Gail

Good Morning

Hello, I just my blood test taken when over at the VA in Lacanto, here in Florida. I don't have the full results from that day, but I do have my AFP 148.00

Most of my test are high or low?

I do have full work list of test taken on 01-09-07

WBC 3.31 L

RBC 3.65 L

I had a cat scan that I sent to Shands and it says some acities in stomach and lungs. Enlarge spleen, other remarks but when ask them to get me copy they missed some pages when printing from computer and the printer.

I just want to know is all this a sign that my liver is even needing more to work? I was hoping someone new. I ask questions when I get to see the doctor which I will not until Feb 12.07.

What should I ask him, I just feel like since I am being followed at the VA, and I try to get my paper work because they are not sending to Shands for me? Any suggestions on making sure my paper work gets from one to the other?

Love you all,

Glenda

January 27, 2007

Hi Everyone this is a friend of the boys. Please pray for him and the family

Blessings

R

-----

How exciting for you; I'd love to be able to fly to see . It's a long time

until August.

In the Kenosha News on Wednesday on the front page was an article about a

soldier from Kenosha injured in Iraq. As it turns out was in DEP (Delayed

Entry Program) with him and he also attended school at Shoreland for his

Freshman and Sophomore year. He then went on to a military school for Junior &

Senior Year. Well, when Jake found out he was hurt, he called his mother to see

how he was. He told her about us MM's, (Military Moms) and how we meet and go

for dinner. She called me and asked if the next time she could come. She is also

going to be meeting with , (Congressman) as he called her too. I told

her that I would too like to talk to him about trying to put something into

effect so that when our boys can fly home, the airlines give them a deal instead

of gouging them. I'd really like to push to do something about this. I think we

need to start writing letters to our Congressman, Senators, Legislatures,

etc..... to get some attention to this issue. What are your thoughts?

God Bless

Armymom01

January 27, 2007

Hi Glenda, Somehow your message ended up in my Bulk Mail folder, it's a miracle I didn't just flush it away. To answer your questions - yes your AFP is high, it seems normal for people who are HCV +, mine has never been normal, always high, the WBC is a little low, not bad & the RBC is also a little low. Don't worry about them. Have you been having any "brain fog" lately? Next time ask your doctor to test your blood ammonia level too. An enlarged spleen is also fairly common for us. It's the reason your WBC & RBC are low. The spleen's job is to fight infection & for some reason it starts killing white & red blood cells as if they were diseases, I don't think the doctors know why. Has your doctor told you what stage &

grade your Hep is at? A biopsy is the best way to find that out so see about getting one. I've had 2, 10 years apart & they both said the same thing, cirrhosis but the first one was mild & the more recent one was decompensated or ESLD (end stage liver disease) all I can say is ask your doctor about a biopsy so you know exactly where you stand. Hugs, SuZie & Sir SpYke the Magnificent (in his opinion & I must say mine too)glendajohn25@... wrote: Hello, I just my blood test taken when over at the VA in Lacanto, here in Florida. I don't have the full results from that day, but I do have my AFP 148.00 Most of my test are high or low? I do have full work list of test taken on 01-09-07 WBC 3.31 L RBC 3.65 L I had a cat scan that I sent to Shands and it says some acities in stomach and lungs. Enlarge spleen, other remarks but when ask them to get me copy they

missed some pages when printing from computer and the printer. I just want to know is all this a sign that my liver is even needing more to work? I was hoping someone new. I ask questions when I get to see the doctor which I will not until Feb 12.07. What should I ask him, I just feel like since I am being followed at the VA, and I try to get my paper work because they are not sending to Shands for me? Any suggestions on making sure my paper work gets from one to the other? Love you all, Glenda

Next time I'm coming back as a cat

January 27, 2007

I will pray for him , I always keep our brave men and women everywhere

who are doing their duty to keep our country safe in my daily prayers

Love,

C

On 1/26/07, Rettig <drettig@...> wrote:

>

> Hi Everyone this is a friend of the boys. Please pray for him and the

> family

>

> Blessings

> R

> -----

>

> How exciting for you; I'd love to be able to fly to see . It's a long

> time until August.

> In the Kenosha News on Wednesday on the front page was an article about a

> soldier from Kenosha injured in Iraq. As it turns out was in DEP

> (Delayed Entry Program) with him and he also attended school at Shoreland

> for his Freshman and Sophomore year. He then went on to a military school

> for Junior & Senior Year. Well, when Jake found out he was hurt, he called

> his mother to see how he was. He told her about us MM's, (Military Moms) and

> how we meet and go for dinner. She called me and asked if the next time she

> could come. She is also going to be meeting with , (Congressman) as

> he called her too. I told her that I would too like to talk to him about

> trying to put something into effect so that when our boys can fly home, the

> airlines give them a deal instead of gouging them. I'd really like to push

> to do something about this. I think we need to start writing letters to our

> Congressman, Senators, Legislatures, etc..... to get some attention to this

> issue. What are your thoughts?

> God Bless

> Armymom01

>

January 29, 2007

Hi ,

I promise that I will pray for all of them!!!

Love always,

Pat

Fw: Good Morning