Newly diagnosed

October 1, 2002

Hi NJ Girl, Welcome to this support group, My name is Sue I have Hep C was diagnosed in 99, my daughter is 24 she has it too, she started treatment last night. first of all, your liver enzymes are not a true indicator of the condition of your liver, some people with very good numbers have alot of damage to their liver and others with outrageous numbers have minimal damage the only way to tell for sure is a liver biopsy it would give your dr. an exact road map of whats happening to your liver. Two, You need to stop drinking ALLTOGETHER, not only is alcohol poison to your liver but they (the docs) know it causes the virus to replicate faster, and you should be very careful of taking tylenol, vitamins with iron and certain drugs like clebrex, prilosec and viox, which have been shown to be especially toxic to the liver. Three, Smoking stresses the liver not just the lungs but thats a personal choice, im sure it would be better if you didnt smoke but thats up to you, about pot, I dont really know. The only thing I know about the sexual transmission rate is that it is very very low (appro. 6 %). I stopped going to nail salons when I found out I had hep c, they should be doing the stanard sterilizing practices but I choose to stop going, luckily my daughter knows how to do nails wraps tips the whole thing. As far as rushing into treatment, I have heard that the better condition your liver's in when you start, the less likely you are to experience really bad side effects, that seems to be the case but each person is so individual when it comes to this disease you just cant be sure and that is by no means a medical oppion. All in all I think your dr. may need to aquaint himself a bit more with this disease, you'd be surprised how few dr. have real concrete experience with this. I hope I've shed some light on this for you and given you some useful info Im sure others will give you even more in depth information. Anyway, I wish you lots of luck and try not to get overwhelmed, that can be real easy, just take a few deep breaths and read all you can. And remember that more people are living with hep c than dying with it. God Bless, Sue

January 17, 2003

In a message dated 1/17/03 7:40:39 PM Eastern Standard Time,

heatheresh@... writes:

> Hello,

> My name is , my husband is 32 years old and has just been

> diagnosed with stage IV lung cancer. I can't believe I am sitting

> her writing this, it seems impossible. I am aggresively seeking

> alternative therapies for him as well as clinical trials etc. He is

> going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

> all hope and prayers you can send our way.

> Thank you.

>

Hi ,

Sorry to hear of you husbands diagnosis. I too have

lung cancer. Your husband was just diagnosed and

they are rushing him into chemo in the first two weeks.

It took over two years, probably more for his cancer

to develop where it is now. Contrary to what you

have been told, you DO have the luxury to take your

time to research all about chemo vs alternative

treatments. You two have a lot to learn. I

highly recommend that you use alternative

treatment with no side effects FIRST. If

that fails, you can always let the doctors

have their way. If they have their way first,

your husband will be left with no immune

system to fight the cancer with alternative

means.

Hank

January 17, 2003

Hi ,

I am very sorry to hear of your husbands cancer and I applaude your approach

for alternative treatments. I was diagnosed with cancer in my esophagus in

spring of 2002. It was early stage however due to my excessive weight the

doctor could not use radiation, and felt that I would not survive surgery.

Chemo would not work alone. His recomendation was " go with the surgery and

hope for the best! " I declined and began searching for alternatives.

I came across a product that had been working very well for others so I

started taking it and eventually became a distributor so I could better

afford it. I now sell it to others at my cost. I have several friends as

well as others on this list who are currently using the product. By the way

after 5 months I had no further signs of my cancer. I do continue drinking

the product as a preventative and for general well being.

Perhaps this would help your husband as well. While I do not want to use

this forum to advertise I invite you to email me directly at

leskruse@... so I can get futher information to you including

scientific studies.

Les

-- [ ] Newly Diagnosed

Hello,

My name is , my husband is 32 years old and has just been

diagnosed with stage IV lung cancer. I can't believe I am sitting

her writing this, it seems impossible. I am aggresively seeking

alternative therapies for him as well as clinical trials etc. He is

going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

all hope and prayers you can send our way.

Thank you.

January 17, 2003

Good advice Hank. I have been living with an adenocarcinoma for quite

some time now. It was discovered almost two years ago and immediately,

the Drs. wanted to cut me up and start zapping me with radiation. I,

of course, declined -- at which point they told me that i would be dead

within a year if i pursued such " madness. " Well, i'm still here. In

fact, thanks to , et al, it is still about the same size that it

was when it was discovered. I even got rid of it once but was unable to

afford the supplements that helped me do it. It came roaring back but i

have been able to keep it in check with vitamin C, L-Lysine and

Pau-D'-Arco enemas.

On Friday, January 17, 2003, at 06:01 PM, hppls@... wrote:

> Hi ,

>

> Sorry to hear of you husbands diagnosis. I too have

> lung cancer. Your husband was just diagnosed and

> they are rushing him into chemo in the first two weeks.

> It took over two years, probably more for his cancer

> to develop where it is now. Contrary to what you

> have been told, you DO have the luxury to take your

> time to research all about chemo vs alternative

> treatments. You two have a lot to learn. I

> highly recommend that you use alternative

> treatment with no side effects FIRST. If

> that fails, you can always let the doctors

> have their way. If they have their way first,

> your husband will be left with no immune

> system to fight the cancer with alternative

> means.

>

> Hank

>

January 17, 2003

I know a man who healed his lung cancer with 30 drops of H2O2 (35 %)

threetimes a day, in perhaps apple juice, a session of chelation, and

some hands on phycic stuff. He's a tough old farmer and is now smoking

again. He was afraid of the medical route so avoided it at all costs.

Love and the best to both of you.

heatheresh wrote:

> Hello,

> My name is , my husband is 32 years old and has just been

> diagnosed with stage IV lung cancer. I can't believe I am sitting

> her writing this, it seems impossible. I am aggresively seeking

> alternative therapies for him as well as clinical trials etc. He is

> going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

> all hope and prayers you can send our way.

> Thank you.

>

January 17, 2003

Hi

Excellent results have been achieved with lung cancer using

the Dr Joanna Budwig Protocol..Join the flaxseedOil2 list @

and ask for information from Cliff Beckwith.

Alvin

hppls@... wrote:

> In a message dated 1/17/03 7:40:39 PM Eastern Standard Time,

> heatheresh@... writes:

>

> > Hello,

> > My name is , my husband is 32 years old and has just been

> > diagnosed with stage IV lung cancer. I can't believe I am sitting

> > her writing this, it seems impossible. I am aggresively seeking

> > alternative therapies for him as well as clinical trials etc. He is

> > going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

> > all hope and prayers you can send our way.

> > Thank you.

> >

>

> Hi ,

>

> Sorry to hear of you husbands diagnosis. I too have

> lung cancer. Your husband was just diagnosed and

> they are rushing him into chemo in the first two weeks.

> It took over two years, probably more for his cancer

> to develop where it is now. Contrary to what you

> have been told, you DO have the luxury to take your

> time to research all about chemo vs alternative

> treatments. You two have a lot to learn. I

> highly recommend that you use alternative

> treatment with no side effects FIRST. If

> that fails, you can always let the doctors

> have their way. If they have their way first,

> your husband will be left with no immune

> system to fight the cancer with alternative

> means.

>

> Hank

>

January 18, 2003

How much vitamin C and L-Lysine do you take?

--- Neil Jensen <neil@...> wrote:

<HR>

<tt>

Good advice Hank. I have been living with an

adenocarcinoma for quite

some time now. It was discovered almost two years ago

and immediately,

the Drs. & nbsp; wanted to cut me up and start zapping

me with radiation. I,

of course, declined -- at which point they told me

that i would be dead

within a year if i pursued such & quot;madness. & quot;

Well, i'm still here. In

fact, thanks to , et al, it is still about the

same size that it

was when it was discovered. I even got rid of it once

but was unable to

afford the supplements that helped me do it. It came

roaring back but i

have been able to keep it in check with vitamin C,

L-Lysine and

Pau-D'-Arco enemas.

On Friday, January 17, 2003, at 06:01 & nbsp; PM,

hppls@... wrote:

& gt; Hi ,

& gt;

& gt; Sorry to hear of you husbands diagnosis. & nbsp; I

too have

& gt; lung cancer. & nbsp; Your husband was just

diagnosed and

& gt; they are rushing him into chemo in the first two

weeks.

& gt; It took over two years, probably more for his

cancer

& gt; to develop where it is now. & nbsp; Contrary to

what you

& gt; have been told, you DO have the luxury to take

your

& gt; time to research all about chemo vs

alternative

& gt; treatments. & nbsp; You two have a lot to

learn. & nbsp; I

& gt; highly recommend that you use alternative

& gt; treatment with no side effects FIRST. & nbsp;

If

& gt; that fails, you can always let the doctors

& gt; have their way. & nbsp; If they have their way

first,

& gt; your husband will be left with no immune

& gt; system to fight the cancer with alternative

& gt; means.

& gt;

& gt; Hank

& gt;

& gt; [Non-text portions of this message have been

removed]

& gt;

& gt;

January 19, 2003

Hi...please e-mail me the info on your product as I have stage 4 breast cancer.

Thanks Judy Hoffman

[ ] Newly Diagnosed

Hello,

My name is , my husband is 32 years old and has just been

diagnosed with stage IV lung cancer. I can't believe I am sitting

her writing this, it seems impossible. I am aggresively seeking

alternative therapies for him as well as clinical trials etc. He is

going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

all hope and prayers you can send our way.

Thank you.

January 19, 2003

Hi Judy,

I am happy to share with you. The product I am using and will continue to

use for the rest of my life even though the cancer is gone is TAHITIAN NONI®

Juice, from Morinda, Inc.

This product has been effective in many forms of cancer as well as other

ailments because it works at the cellular level to enforce your immune

system.

It is also used to assist in healing after surgery and as well as in

conjunction with chemo and radiation to lessen the bad side effects.

I am going to direct you to some web sites to help you educate yourself on

the product and its many uses.

First is http://www.incc.org this is an independent site that explains about

the fruit and its properties. Pay special attention to the " Testimoies Page

Second is http://worldwidescam.com/nonirep.htm this site will lend creedance

to the fact that the company is real, the product is real and while it may

not work for everyone, the overwhelming majority of people who use it as

directed have very positive results. This site also sites some of the

scientific studies on the juice.

Third is my personal marketing site http://www.leskruse.com this site will

give you a great deal of information as well especially why our brand

TAHITAIN NONI® Juice is the first and best product on the market. While you

can purchase juice from my site I would prefer you and I speak directly

since on the site you would have to pay full retail while it is my policy to

sell it to fellow cancer overcomers at my wholesale cost.

I am also including some attachments of interest please take your time and

if you need to talk email me your phone number and the best time to call, so

I can call you using my flat rate phone service.

I look forward to answering your questions.

Les W. Kruse

541-347-9550

PS: I currently drink 6 ounces daily although at the beginning I did a

Loading Dose to shock my immune system " I will tell you more about loading

if you decide to try the product.

-- Re: [ ] Newly Diagnosed

Hi...please e-mail me the info on your product as I have stage 4 breast

cancer. Thanks Judy Hoffman

[ ] Newly Diagnosed

Hello,

My name is , my husband is 32 years old and has just been

diagnosed with stage IV lung cancer. I can't believe I am sitting

her writing this, it seems impossible. I am aggresively seeking

alternative therapies for him as well as clinical trials etc. He is

going to begin chemo in the next 1-2 weeks. I'd appreciate ANY and

all hope and prayers you can send our way.

Thank you.

March 8, 2003

Hi Shari,

There are no alternative treatments to prednisone and Imuran, unless the

AIH is so refractory that alternative medicines must be taken, such as

cyclosporine or Sandimmune or other anti-rejection medicines. These are

very powerful and can have many side effects.

Prednisone and Imuran are usually the drugs of choice for AIH because

the side effects are fewer than with other drugs. When taken together

they greatly enhance the immunosuppressive effect. About 70% of people

with AIH will respond to this treatment.

AIH is diagnosed by a long process of elimination. It could take several

months to narrow down the diagnosis. A response to these drugs is

generally diagnostic for AIH.

A biopsy should be done if the LFT's continue to rise over the months

while under observation by the doctor.

My doctor thinks Dr. Czaja at Mayo clinic is one of the best experts on

this syndrome in the country. She will be sending me there soon to

discuss my prognosis. Follow your doctor's advice, it will be worth it!

Best wishes for your sister!

[ ] Newly diagnosed

My sister has seen Dr. Weber in Cincinnati and has been diagnosed with

auto-immune hepatitis -- mostly because they can't come up with anything

else, it seems. Some initial questions:

Who are the top specialists in the country?

Are there aggressive vs. " wait and see " doctors?

Anyone trying alternative treatments to prednisone and imuran?

Thanks,

Shari

sharimurphy@...

May 17, 2003

<<<<<<Peripheral neuropathy (related?)>>

Yes, certainly it was for me and many others.

It sounds like all lyme symptoms to me...now that you have a dx of

lyme. Find a Lyme literate Dr., and get on abx.......it will be a

rough road.....worse days are ahead.....but your husband can get

better.

He just needs to get to a LLMD.....Keep your Neurologist, but seek out

an MD that really understands and treats lyme patients.

Hang in there Donna,

Connie nwnj

May 17, 2003

Well, I called the neuro on call Friday evening, because I couldn't

stand it anymore. Sorry if you have been waiting on pins and needles

for my reply...hubby needed to get out of the house, he has a severe

case of cabin fever...who wouldn't? The GP had prescribed

doxycyline. However, since he has CNS involvement, I asked the neuro

if he should be on IV antibiotics. She said, Yes, that I should call

the neuro on Monday. He has not started the doxy, though, because he

has a spinal tap scheduled for next week and we didn't want that to

affect the results. We want the Lyme to show up in his spinal fluid

now so we will definitely know that is what is causing the CNS

problems. The neuro on call said they would still need the spinal tap

to make sure it is the Lyme and not just Lyme on top of something

else. I imagine she was talking about something like MS or other tick

diseases...we want to make sure the tests come back positive if they

are there. I didn't ask the neuro about stopping the doxy, because

from previous experience we have seen that most docs won't go against

another one, so I just didn't ask and we are doing what we think is

best. Just like how his Crohn's doc told us a few weeks ago to

continue taking his immunosuppressive medications (Remicade &

Methotrexate). He decided to stop the Methotrexate and not listen to

the doc...he is not scheduled for another Remicade treatment at the

hospital until next month...I'm sure plenty of that is still in his

system. Now we are in a mess because he can't take that for Crohn's

anymore.

As for a Lyme doctor, I am sure that will not be a problem. My

husband is going to s Hopkins Hospital in Baltimore...I'm sure

they must have Lyme specialists there. I will ask the neuro when I

talk to him. I also have a friend at work that has had Lyme for

several years and she really likes her doc.

As for the chest pains, those stopped several months ago. He had

those during December and we went to the ER twice for it. They ran

an EKG and an angiogram and the second time we were told it was

actually pain in the middle of the chest, in the middle of the rib

cage...like costocondritis, I guess, obviously related to the massive

joint pains he was having at the time. He had a fever of 102.6 along

with it and it was presumed to be an allergic reaction to the Imuran

he was taking. Very confusing because chest pain and high fever is a

know reaction to the drug he was taking at the time. He also broke

out in a rash on his ankles...that kinda looked like little sores.

The Imuran was stopped and he was prescribed Methotrexate instead.

The chest pains are another thing I will discuss with the neuro on

Monday. I'm sure they will test him again to make sure his heart is

OK...that is if I have anything to do with it!

Another question...will he have to be hospitalized for the IV

antibiotics? I imagine he will have to have infusions more than once

a day, right? Plus, the infusion room isn't open on weekends, so I

imagine that will mean several weeks in the hospital...my husband

will love that. Especially since this will be his fourth extended

hospital visit. Luckily, all hospital visits are on the house,

because I met my out-of-pocket expense first thing in January!

I am pretty sure the neuro will be testing him for all the other

infections...I make sure he does. I will also be getting tested for

the stuff, too, because I had something this past summer that could

be Lyme...nice spreading hot red area that I was told was atopic

dermatitis and the little red scaley spot in the center was a little

spot of poison ivy? It was scaley so I was told it couldn't be

Lyme...nevermind that I get eczema from everything and maybe a tick

bite would set that off, too. Then a sore neck...spinal cord

area...and swollen lymph nodes. I actually went to the doc for it,

too. Did I get a Lyme test? NO! Plus, I don't trust the opinion of a

GP who told us my husband's MRI looked OK to her and it was probably

just nothing! Plus, I have had Rocky Mountain spotted fever in 1986

and was never tested for anything else. They could never actually

confirm it was RMSF, because they lost my blood tests! But, I'm sure

it was from what we had read about and I had never been so sick in my

entire life!

Ooops...just remember something. One of his ankles is very swollen

and he is losing hair on the sides of both of his legs, which I am

assuming is a vascular problem. Ran all kinds of bloodwork for that

twice and was checked for DVT. Does this happen with Lyme? Maybe

inflammation in the bloodstream from the infection? Posssible heart

problems??? He is no longer having chest pain...now I am starting to

doubt the previous diagnosis of his chest pain. ARGHH! Now I wonder

if I should call the neuro back again... I don't know if I could even

drag my husband back to the hospital again if I tried, he hates it

there. Maybe I will just wait to talk to the neuro on Monday

morning... Would the angiogram (the one with the radioactive dye)

catch pericarditis?

Donna

> Dear Donna,

>

> Well, the " good " news is that you have a diagnosis!! Many people

do in

> fact have Lyme but it doesn't show up on the tests. (Now don't you

feel

> lucky? LOL). Seriously, he can be treated for this Lyme.

>

> Sadly, and I say this w. sympathy, you are among many others with

the same

> story: someone having been sick for so long, and it takes so long

for

> doctors to figure out what is wrong! Many of us have a long list of

> doctors we want to see punished!

>

> Do you have access to an LLMD? A Lyme Literate Doctor? Post a

request

> for a referall and also check out the site Flash Discussion at

> lymenet.org. People will help w. questions and doctor referalls.

>

> Very important: he must get tested for the co-infections -

additional

> infections that ticks can also spit into you. (Aren't they

wonderful

> little creatures??) The co-infections include Erlichia,

Bartonella, and

> Babesiosis.

>

> Your husband sounds like he may have a co infection, based on his

> symptoms.

>

> Didn't the doc give him any treatment? Just called and told you he

has

> Lyme w/o prescribing any antibiotics? Did I read your message

correctly?

> He has to get on antibiotics! And if he has active Lyme, and he

has chest

> pains, it could be affecting his heart. I don't want to worry

you. But

> you must get him on antibiotics. Does the GP's office have any

sort of

> weekend answering service?

>

> For additional info, check out some of the articles on Lyme Aid's

home

> site. Also lymenet.org.

>

> Hopefully this will be the beginning of the end of this road for

you!

>

> Sincerely,

> Marie

May 17, 2003

Donna, the Lyme disease causes chest pains and can and does cause numbness in

the arm and sometimes the hand. It also causes the heart to race, bells

paulsey like symptoms, terrible pain in localized areas of the body. The

Lyme causes severe nuerologic conditions that may result in weakness,

fainting or near fainting and almost anything else. The IV is not

administered in the hospital unless the patient is pretty much like a

vegetable.

A PICC line is inserted in the arm with a connection that lets the medication

be injected into the body. A pressure ball of medicine injects the

medication and the medication can be on the floor and it will still be

injected in about 40 minutes. The patient is free to move about and can keep

the medication in a pocket if desired. The line stays in the arm until the

medication is stopped because the doctors say the patient is well or perhaps

the patient is well. The is another area of insurance as this treatment is

pretty expensive and is on an out patient basis. Your husband could actually

go to work if he feels well enough. One of the problems that will occur is a

HERX condition as a lot of bacteria will be killed off. The medicine is

delivered once a week with a 7 day supply and must be kept in the

refrigerator. There are two other fluids associated with this treatment, one

being a blood thinner and one to keep the line open for further treatments.

The process is quite simple and works very well. A home nurse comes once a

week to take a blood sample and change the bandage on the PICC line. It is

called a pick line and the PICC is the actual initials for the procedure in

words. I forget what the words are, but it does not matter. I really would

like for you to call Sue Massie, before you do anything as she knows so much

about ever aspect of this Lyme afflication. One test you might use if you

find a Lyme doctor is to see if he/she knows what a HERX is. If they do not

know about a HERX you should run away from the doctor.

God bless you all and my prayers are for your entire family.

Sidney

May 18, 2003

Sidney,

Thanks very much for the advice! BTW, hubby (Carey) did also have the

heart racing when he was having the chest pain. So far it seems like

the only thing he hasn't had is the palsy-like symptoms. We

discovered at the neurologist's office that he also has peripherial

(sp?) neuropathy in his hands. We already knew he had it in his feet,

but didn't realize it was in the hands. He does not have any tingling

or numbness in his hands...just feels a diminished sensation down to

the hands with the pin pricks. Recently he has had wrist pain...like

carpal tunnel, I guess. He also did not feel some of the testing the

neuro did on his fingers and feet using a frayed Q-tip. The Lyme

causing the neuropathy would explain why he has neuropathy even with

great blood sugar control. They were astonished in the hospital that

his a1c was just like a person w/o diabetes...always in the 5s. I

know many people with type 1 diabetes...none of them have neuropathy

like this with just 9 months of bad blood sugar control (prior to his

diagnosis with type 1, he was mis-diagnosed with type 2 and the doc

refused to believe he had type 1 and wouldn't put him on

insulin...this is when he has 9 months of high blood sugars and got

down to 140 lbs.) The only person I know that has neuropathy in their

hands from diabetes is someone who had years and years (20+) of bad

control (rebellion) as a youngster and has other severe problems like

retinopathy and kidney failure...my husband has nothing like that.

He hasn't had anything like fainting, either. Are you talking about

autonomic neuropathy? Fortunately, he does not have that either. We

dumped his prior PCP because he said my husband had autonomic

neuropathy from diabetes. The PCP didn't really base that diagnosis

on testing, he just said it because he got dizzy on standing and I

guess he couldn't think of anything else better! The neuro says he

doesn't have it. Also, it is *impossible* to have AN from the length

of time he has had type 1 diabetes, even if he had really bad

control. If he did have AN, it sure wouldn't be due to diabetes. DUH!

(Yes, you can get type 1 diabetes as adult!)

As far as expense goes, right now my insurance is paying approx.

$7000 every 8 weeks for Remicade treatments for Crohn's, so if the

cost is less than that, I don't see why I should have a problem

getting it approved. Especially since now that he has Lyme he won't

be able to take Remicade anymore. How much cost are you talking

about? I have a self-funded plan at work that has been great...I work

for a large company and so far have not had any problems. Thank

goodness, because before I took this job 4 years ago I had no health

insurance.

Just told Carey about the treatment you mentioned. Needless to say,

he is not so happy about the PICC line. Please tell me how to get in

touch with Sue. Has she had this treatment? Unfortunately, hubby is

allergic to penicillin, sulfas, and cephalosporins. Don't know what

options this leaves him with...

No chance of hubby going to work...unfortunately, he hasn't worked

since mid-December. I am going to also speak with the neuro about

filing for disability. I realize he will probably get better, but

this has been going on for so long we need to go ahead and file

because I don't know how he is going to be able to continue working

anytime soon. If he does start working, he will need a job in a whole

new field...not just due to Lyme, but also because of the Crohn's and

type 1 diabetes he already has. These diseases all affect each

other...the Lyme is making the Crohn's flare...the Lyme and Crohn's

screw up the blood sugars, etc. etc. Because of the lightheadedness

and dizziness from Lyme he can no longer feel low blood sugars...that

is dangerous...one evening when I was gone at work he almost passed

out because he doesn't realize he is low until it is too late. Even

though he checks his blood sugar 10x day it is not possible to catch

everything!

Is there a Lyme chat room anywhere that stays fairly busy? I check

this one occasionally and there is never anyone there. Is there a

good time to pop in there for a chat?

Donna

> Donna, the Lyme disease causes chest pains and can and does cause

numbness in

> the arm and sometimes the hand. It also causes the heart to race,

bells

> paulsey like symptoms, terrible pain in localized areas of the

body. The

> Lyme causes severe nuerologic conditions that may result in

weakness,

> fainting or near fainting and almost anything else. The IV is not

> administered in the hospital unless the patient is pretty much like

a

> vegetable.

>

> A PICC line is inserted in the arm with a connection that lets the

medication

> be injected into the body. A pressure ball of medicine injects the

> medication and the medication can be on the floor and it will still

be

> injected in about 40 minutes. The patient is free to move about

and can keep

> the medication in a pocket if desired. The line stays in the arm

until the

> medication is stopped because the doctors say the patient is well

or perhaps

> the patient is well. The is another area of insurance as this

treatment is

> pretty expensive and is on an out patient basis. Your husband

could actually

> go to work if he feels well enough. One of the problems that will

occur is a

> HERX condition as a lot of bacteria will be killed off. The

medicine is

> delivered once a week with a 7 day supply and must be kept in the

> refrigerator. There are two other fluids associated with this

treatment, one

> being a blood thinner and one to keep the line open for further

treatments.

> The process is quite simple and works very well. A home nurse

comes once a

> week to take a blood sample and change the bandage on the PICC

line. It is

> called a pick line and the PICC is the actual initials for the

procedure in

> words. I forget what the words are, but it does not matter. I

really would

> like for you to call Sue Massie, before you do anything as she

knows so much

> about ever aspect of this Lyme afflication. One test you might use

if you

> find a Lyme doctor is to see if he/she knows what a HERX is. If

they do not

> know about a HERX you should run away from the doctor.

>

> God bless you all and my prayers are for your entire family.

>

> Sidney

>

May 18, 2003

Dear Donna,

Maybe his Crohn's disease will get better with treatment for Lyme disease and

other known tick borne diseases. I know someone who did.

Martha A.

May 18, 2003

What exactly is a HERX condition

May 18, 2003

<<<<<<Methotrexate>>>>>>>.

Now I understand why the Lyme took over his body so quickly. I was on

Methotrexate for a short time (also suffering from an autoimmune

disease)

I got a cold when I started it, my immune system was too suppressed

from the methotrexate, that the cold took over my entire body. I was

very sick.

You might find that the Crohn's symptoms get better or might actually

disappear once treating with abx.

<<<Another question...will he have to be hospitalized for the IV

antibiotics? >>

They will probably put in a PICC line, and this will stay in, while

you treat with IV abx at home.

<<<<,Then a sore neck...spinal cord

area...and swollen lymph nodes>>>>>>

Swollen lymph nodes are common with Bartonella bacteria as is Eye

involvement.

Conniek nwnj

When our bodies & minds are out of balance........we suffer!

Leave no stone unturned, research!......The mind is a powerful tool!

May 18, 2003

In a message dated 5/18/03 1:28:23 PM Central Daylight Time,

JRoss8838@... writes:

> What exactly is a HERX condition

>

> [

A Herx condition is when a lot of bacteria is being killed off and can not be

exhausted from one's body fast enough. There were two doctors several years

ago that noticed this condition and one of the doctors was named Herximer or

something like that. So they started calling this effect a HERX. The effect

is that the Lyme patient becomes sicker while on the medication than before

taking the medication. The HERX can take many forms and can be so severe

that medication must be stopped for a while.

Sidney

October 5, 2003

--I would appreciate hearing from someone who has had similar

symptoms

> and also would like to know wheter this continues to progress or

can

> it be slowed down or stopped.

>

> Thanks

> Barb

Hi Barb,

Welcome! Your symptoms surely do sound familiar. I imagine almost

everyone on the board can relate to them. We have found thru our

group that there is a lot of variation in how people's diseases

progress. Some have milder cases than others and some meds work

better for some people than others. One thing that seems to be

consistent is that once we have it it doesn't go away.

If your goal is to stop progression then stronger or additional

medications are usually used. Your Vioxx is a good start but you may

need more. Did the Rheumatologist give you a diagnosis of PA? If

so, these days many Docs use a class of meds called DMARDS and a

class of meds called Biologics in addition to what you have which is

classified as an NSAID. If you scan back through the messages by

pushing previous the 3rd past newsletter has a good explanation of

what these meds are. Also, http://psoriasis.org has very good information on

the medications for psoriatic arthritis.Using this information could

help you talk to your doctor who of course makes the decisions that

seem best for you.

Good Luck with everything and glad to have you onboard with our group!

Marti

October 6, 2003

Hi Barb--

I am 55 and was diagnosed two years ago but I think I have had symptoms of PA

for years....just didn't know what it was and it was mild until then. Now it is

not mild and does not go away. I have bouts of bad to worse, but never none. I

have/had involvement in my jaw, shoulders, breast bone, ribs, neck, back, hips,

ankles, toes and hands. My ankles, toes and hands are the worst so far. I think

you probably need more then Vioxx. In my experience MTX and Arava work well

although the MTX made me feel awful. Now I just take Arava which helps a lot.

Vioxx causes my ankles to swell and that just adds to the misery so I don't take

it very often and I miss it.

Also, planned periods of rest are vital to caring for yourself. I work fulltime

so I rest on Saturday whenever I can. I feel like I have been robbed of a lot

of my very satisfying social life but the resting is what makes it possible for

me to carry on the rest of the week.

Take care if you can, Cheri

[ ] Newly Diagnosed

Hi

I am 57 years old and had psoriasis since I was 17 years old.

Basically has been in remission since my mid 20's except for two

small spots on my elbows.

I have been having joint pain on and off for the past 6 years. My

elbow hurts, my hands hurt, and my knee hurts. Also have had an

achilles tendonitis. I am also experiencing low back pain when I sit

which seems to be better when I am walking.

I have seen a rheumatologist 2 weeks ago and she changed my meds to

Vioxx from Bextra. It does not take the pain away and I have had to

take Darvocet N 100 in addition.

I would appreciate hearing from someone who has had similar symptoms

and also would like to know wheter this continues to progress or can

it be slowed down or stopped.

Thanks

Barb

October 13, 2003

Welcome a.e.:

I'm in the same age group and been diagnoses only 2 years. Grieving is the

correct terminology and a natural reponse to this disease........but I applaud

you sense of humor and am happy you have supportive friends. Having Hep C will

certainly challenge the docs to find meds that will work for you.

Cheri

[ ] newly diagnosed

hello, want to stop lurking and say hello. my drama name is queen

and i am from austin texas. i am 51, and have one son. i have

hepatitus c, but was having extreme joint pain that the dr.

diagnosed me with pa this summer.

i am grieving for allot of life changes, divorce, not working, and

having to slow wayyyyyyyyyy down. but i have a sense of humor, great

friends, and a great doctor. my specialist wants me to lose weight,

yeah and i want to run...and so i was sent to new dr. she found a

goiter...does anyone have that too? okay the toe is in the water,

and hopefully i will feel safe soon to swim with the rest of you.

i recieved e-mail about founder being in hospital..i will send card.

thank you for this great site.

October 13, 2003

-Welcome queen!

Sounds like you have alot going on. Glad you found us. I don't have

a goiter but a friend of mine just had one removed. Now she takes

synthroid and she is doing very well. Looking forward to your posts

on the message board.

Marti

December 1, 2003

I am so glad you finally found help, and the right diagnosis!

I too experienced much of what you went through. Except they

diagnosed me as depressive pms disorder. A combo of Zoloft and Zanax

got rid of some of the anxiety and insomnia, but didn't cure me. The

weepy tearful moods kept striking, so did bi-monthly 5 day long black

depressive spells. Of course, I kept this all to myself or I am

sure they would have been pulling out the strong anti-depressants.

T4 wouldn't cure the behavioral, T3 did. If your current dose

doesn't alleviate the tearful bouts I encourage you to explore with

your doctor the possiblity of adding a little T3. It did the trick

for me when the labs never indicated that this was the problem. I no

longer take Zoloft, Zanax or any other antidepressant.

However, I must add that these posts are starting to scare me. I see

such a strong correlation between this disorder and schizophrenia

and/or manic depression. I do not suffer from these, but it is

strongly in the family tree.

December 1, 2003

Thank you so much for the information and feedback!

Now. I'm still learning, but I think that when you say T4, that's what's in

the synthetic RX's (like Levoxyl, which is what I'm on). Levoxyl doesn't

have T3, I'd have to be on a natural thyroid, like Armour to get that,

right?

My doctor did talk about another alternative to try, something that is made

out of pig thyroids, that we could try as well if this one didn't work. I'm

assuming that's what the natural is.

I'm I getting it, at least a little? :-)

_____

From: Cher [mailto:hary722001@...]

Sent: Monday, December 01, 2003 10:36 AM

hypothyroidism

Subject: RE: Newly Diagnosed