Good News

September 12, 1998

Dear Esther:

Hi my name is and I too have a goiter on my right lobe. I am in the

process of surgical removal of the right lobe only and the isthmus. The goiter

is constricting structures within in my neck including blood flow. I had/have

periods of increased heart rate, sweats, nausea and purple feet when crossing

my legs and standing first thing in the morning. My TSH was 3.3 and now it

runs between 1.1-1.6 and considered normal. When I went into a severe attack,

I was in the hospital and had my TSH run during an episode. It was .99. Any

thoughts about this and your ideas?

My e-mail address is lisawick@... Would like to hear from you.

______________________________________________________________________

January 20, 1999

Dear Anne: Blessings to you! What wonderful news!! When you ask if

the lyme is still there, does it really make a difference? If you feel

well and are functional, look at it as a gift - don't look back [or

forward] and dwell on the negatives of " what if " . You have been given a

gift that many of us hope for. Use it well, use it wisely, but use it!

And give thanks to God for your healing!

Lovette

January 21, 1999

anne,

its not what the blood tests say it is how u feel that matters.......in my

opinion lyme blood test are a waste of blood and money.....even the best labs

are not accurate......most drs i know put more credence in how the pt. feels

rather thatn the blood work.......it basically is a clinical dx.......based on

symptoms.......i hope that you are in remission and stay there.......i hate to

ever use that word " cured " from what i have read we are never

" cured " .........maybe someday.....god bless

Reid

January 21, 1999

Reid and all,

I know that the Lyme diagnosis has to be made on a clinical basis, but

where I get confused is how they can differentiate CFS/FM symptoms from

Lyme disease. It has gotten so that I know which doctors will diagnose

the same symptoms as Lymeand which will call it CFS/FM. Does anybody

know ;how these illnesses are differentiated from each other clinically?

Ellen

January 21, 1999

At 08:33 PM 1/21/99 -0500, you wrote:

>From: ellenlu@... (Ellen Lubarsky)

>

>Reid and all,

>I know that the Lyme diagnosis has to be made on a clinical basis, but

>where I get confused is how they can differentiate CFS/FM symptoms from

>Lyme disease. It has gotten so that I know which doctors will diagnose

>the same symptoms as Lymeand which will call it CFS/FM. Does anybody

>know ;how these illnesses are differentiated from each other clinically?

>Ellen

>

It will take time for the Steere group to be unmasked, but EVENTUALLY, the

medical profession will recognize that the most likely cause of CFS/FM is

Lyme disease.

One of today's tragedies is that the majority of physicians have listened

to the Steere line, and glibly diagnose CFS/FM amd refuse to consider

Chronic, long-term Lyme, or even admit it exists.

A great many CFS/FM victims, when Lyme antibiotic treatment is suggested to

them, are afraid to consider abx treatment, because, at some time in the

past, they have had what they believe to have been an allergic reaction to

abx.

In reality, while allergic reactions to abx do occur, they are rare, and,

in most cases, what the patient believes was allergic reaction was in

reality a Herxheimer reaction, which those knowledgeable about Lyme know is

an indication that the spirochete is present and being killed.

Some day, all this will pass

Colby Van Atta

>------------------------------------------------------------------------

>

January 21, 1999

Ellen,

You bring up a very valid question when you ask how the

doctors are supposed to tell the difference between FMS/CFS

and Lyme. The fact that too many doctors are all to " quick "

to diagnose FMS/CFS or some of the other syndromes and

or diseases that can be diagnosed instead of the true illness,

Lyme, is something my own Lyme doctor has commented

upon to me.

I know that I spent 20 years seeking a cause of the all over

joint pain that started in my late 20's, and the all over

muscle skeletal pain that became chronic going on 9 years

ago, too many years of pain until I was finally diagnosed

" after " the neurological symptoms escalated and drove me

to new doctors. It is possible to have FMS/CFS and Lyme

at the same time, the FMS/CFS " can " be caused by the

underlying undiagnosed and untreated Lyme disease.

The question of which disease and or syndrome to treat

a patient for is the dilemma. In my opinion, this is the

reason we must find Lyme literate physician's to treat

us instead of doctor's who are willing to treat on the

basis of what information we give them on Lyme and

do it trial and error. Don't misunderstand me, that's

better than nothing but do we honestly want to take

mega doses of antibiotics if we're not sure we have

Lyme? I don't think I am the best one to judge if I

have Lyme or not, but then I was lucky (or unlucky

since it took 20 years to diagnose) in that the pain

doctor I self referred myself to asked me to be

tested for Lyme to " rule it out " and then sent me to

a Lyme literate physician.

Problem is that too many of the people out there,

myself included, do not or did not have a clue that

Lyme was a possible diagnosis instead of or in

addition to the myofascial pain and fibromyalgia

pain syndromes. So, the key has to be finding

a Lyme literate physician to treat you plus helping

to inform and educate others about the possibility

of Lyme being the causative factor of illness and

debility. It's a nightmare to be so sick for so long

and even begin to doubt yourself and your sanity

because no one believes you can hurt like you do

and feel the way you feel for so long and not find

help.

The difficulty in diagnosing and treating Lyme is

in itself reason enough to seek out the Lyme literate

physicians. Yes, labs can make mistakes or the

Bb can collapse the cell around itself and hide from

your immune system and you will not test positive, but

the Lyme literate physician will know this and will use

the other tools at hand to rule out other possible

illness too. It's not a magic pill kind of deal and it's

not a quick cure, and to be certain, it's not a piece

of cake to diagnose. I KNOW that the Lyme diagnosis

is RIGHT because finally after years and years of so

many unexplained symptoms that made me seem to

be a hypochondriac, some of these symptoms are

finally getting better on the antibiotic treatment.

At this point, I have been put in the position of

having to " defend " my Lyme treatment to the insurance

companies and to other physician's who don't believe

in Lyme or believe all Lyme can be cured in 14 days.

Sorry, it doesn't work that way for everyone and that's

certainly true for people like me who have probably

had it half their lives, undiagnosed and untreated. So,

as long as I know, and I do know in my gut, that this

is finally the right treatment and there have been some

improvements, I will continue the treatments. I don't

see that I have any choice if I ever hope to get well

enough to be able to return to work. I feel confident

that the new testing, by culturing the blood for the Bb

recently published will be duplicated by others and

we will finally have a test that can prove the Lyme is

present even after aggressive treatment. So, the next

step will be once the presence of Lyme can be proven,

then I am hoping that other researchers will finally

begin looking for cures for Lyme.

Until then, I read everything I can get my hands on

and learen all that I can about this illness and the

effects it can have our us plus the treatments and

even though I have a Lyme literate physician and

have every confidence in my physician, I am still going

to be as informed a consumer patient as I can

be so I can make " informed " decisions regarding

any medical treatment I am offered or receive.

Wishing us all health and freedom from pain,

both physical and emotional -

Ellen Lubarsky wrote:

> From: ellenlu@... (Ellen Lubarsky)

>

> Reid and all,

> I know that the Lyme diagnosis has to be made on a clinical basis, but

> where I get confused is how they can differentiate CFS/FM symptoms from

> Lyme disease.

January 21, 1999

Colby, EXCELLENT! You are exactly right about the

reactions to the antibiotics. Another that is similar is the

business about the other physician's who do not understand

or believe that Lyme can do all that it does and or be such

a problem for so long is the question of taking the antibiotics

in larger doses for longer periods of time.

Having seen what Lyme can do to some people, seeing

others patients in my doctor's office, my husband and I

are 150% sure that the risk of taking the antibiotics is

minimal compared to not taking the antibiotics! Also, as

has been written, the long term treatment of acne has

caused people to be on antibiotics for long periods of

time without harm, so for myself, the antibiotics are what

I can do until someone gets serious and finds a cure!

Wishing us all health and freedom from pain,

both physical and emotional -

January 22, 1999

Ellen,

As far as I know, CFS/FM do not get rashes, or Herxheimer reactions when

treated with abx. There are more differences, but can't think clearly, just

woke up...Yawn.....

Marta

From: ellenlu@... (Ellen Lubarsky)

Reid and all,

I know that the Lyme diagnosis has to be made on a clinical basis, but

where I get confused is how they can differentiate CFS/FM symptoms from

Lyme disease. It has gotten so that I know which doctors will diagnose

the same symptoms as Lymeand which will call it CFS/FM. Does anybody

know ;how these illnesses are differentiated from each other clinically?

Ellen

January 22, 1999

Marta,

I have had a positive elisa and a western blot that was positive enough

for my LLMD, but not for the CDC. I did not, however, have a herxheimer

when treated and never noticed a rash , so I am still confused about the

clincical differences between Lyme and CFS/FM. .

I appreciated your response to my last post, and I know you just woke

up. But if you later have any more thoughts about the clinical

differences between CFS/FM and Lyme, I would begrateful for further

information.

I'm not trying to be difficult here. I really do have a lot of trouble

with with the concept of Lyme being a clinical diagnosis. At this

point.

after long term abx, I suspect that I have chronic Lyme,but have some

hesitation about being treated again unless I am more certain of the

diagnosis. This is because the systemic yeast from the abx has

itself been disabling.

I have seen two doctors and gotten two different opinons, and I know at

this point that I can predict the diagnosis I get by knowing which side

of the controversy the MD is on.

The post-infectious side says my cognitive problems are not suggestive

of Lyme,and,, indeed, the cognitive problems ain't nothing compared to

the fatigue. Although I have plenty of cognitive problems , my short

term memory is not real bad.. Is there any basis to using only

specific cognitive problems in diagnosing Lyme vs. CFS/FM.?

Sorry this is so long. I would really like to know more about the

differential diagnoss, not only for myself but for others I know who are

being diagnosed with CFS/FM. Friends are beginning to see me as the

Lyme hysteric who

thinks every sick person has Lyme. (and I pretty much do)..

For myself, I am currently waiting for the results of my babesia and

ehrlichia tests from my LLMD before restarting Lyme tx. In the

meantime, I'm turnng up other problems with

my non_LLMD, like neurally mediated hypotension, low thyroid and

hypoglycemia, all

of which may or may not be signs of persistent infection.

So, if there is any more information about clinically differentiating

these illnesses., I would really appreciate it..

Thanks, Ellen.

January 22, 1999

Ellen Lubarsky wrote:

> From: ellenlu@... (Ellen Lubarsky)

>

> Friends are beginning to see me as the

> Lyme hysteric who thinks every sick person has Lyme. (and I pretty much

> do)..

Glad I'm not alone here!! I think I have found Lyme in 3 of my friends,

since I've been ill. One of them is in her 40s, and had a preliminary

diagnosis of ALS. She thought her life was over. I persuaded her to go for

testing and find an LLMD -- she went yesterday. But she had every single

symptom that I've had, and even got sick at the same time and on the same

timetable. The doctor told her that the joint pains, shooting pains, plantar

fascitis, etc that she was having were unrelated to the fatigue, twitching

and weakness. Oh, okay. And he never did a Lyme test.

I've got another friend whose 20-year-old daughter returned from a year

working with Americorps building low-income housing in rural areas. She's

had joint pain in both hands, both arms, sore knees, stiff neck,

excruciating back pain, sleep disturbances, weight gain, depression and

confusion. The doctor told her she had tendonitis, and put her on ibuprofen.

I said, " Tendonitis ALL OVER HER BODY?? " I am hoping I can persuade them to

get another test done.

Just in my circle of acquaintances, I have met over 2 dozen people who had

been diagnosed and treated for Lyme in the past few years. Few of them had

spoken out about their experiences, and although many of them are friends

with each other, they didn't know the other had been ill. I have tried to

encourage them to speak out more and educate people about what's going on

here -- this is exploding into such a huge epidemic in NJ, and there are

still so few people who know what's going on!

Jean

>

January 22, 1999

I had the same aches and pains as the 20 year old daughter including

pains so bad in my legs, I wasn't sure if I was going to be able to walk

or not. I was diagnosed with Lyme. My Western Blot came up positive

and then they took another titre test and it came up negative, only

one band, I think it was 39 was positive. So they say that the lyme

is gone, but I'm not letting my guard down. My doctor said if I get

any of those symptoms back again, we will run another blood test.

But I know exactly what you are saying....I think the same way sometimes

about my husband.

Anne from land

January 22, 1999

Ellen, I hope you will get the answers to what you are looking for. I know

what you are saying about conflicting opinions. I started with

neurologists.....ended up with 3 diff docs 3 different opinions. It wasn't

until I saw real life on MTV that I even contemplated lyme disease. I really

believe that you should study any health problem that you can find related to

your symptoms and then go with your gut instinct. I met a woman recently who

was an MD and has had to give up her practice due to lyme, she stated to me

that its ironic that most lymies have to dx themselves and then find a doc to

confirm their suspicions. Go with your gut instinct and you will probably be

right. Take care, and make sure you are going to a LLDoc who is highly

recommended. I am a little scared of the money game that goes with lyme

disease for I have found that most of the good docs don't take insurance. All

I can suggest is that you search and ask people about the DR you are seeing.

We all know that bad news travels fast, so if others are feeling that he or

she is miss dxing people you will find out easily. Take Care and let me know

what you find out.

Hugs

Amy

January 23, 1999

cfs and fm are by products of lyme....i have been dx with both......however

there are many more symptoms....i was origanally dx with ms.....what my llmd

was do test to elimanate all other possible diseases

Reid

May 6, 1999

Madonna,

When sharing good news like that you shouldn't have to worry about making it

short. I am so glad everything checked out okay. Now just to get the rest of

it taken care of. Hang in there----I'm sure your hubby will be fine in no

time. Joan in PA

July 11, 1999

,

That is so great to hear, I am so glad things are looking good for

grace!!! n

July 12, 1999

Fantastic news about Grace. Tell me which exact meds is she on again at the

moment and what are her symptoms if any?

July 12, 1999

N.

Read you news about Grace. Glad to see SED rate was down. I have to say I

understand about the relatives, just take it in stride. Enjoy Grace's time

being well, we as parent's are always sitting on the edge, but you know

what it never gets any easier, each time they flare we feel that we should

have known that it was going to happen, but guess what after 10 years it

still isn't any different. I take it a day at a time and take the good

with the bad. I really want to say that I'm really glad that she is doing

well now. Lots of Love, Laughter, and Prayers.

-Coady and Leigh-Ann

----------

> From: Jakuch@...

> onelist

> Subject: [ ] Good News

> Date: Sunday, July 11, 1999 1:27 PM

>

> From: Jakuch@...

>

> Dear All,

> We had some good news about Grace this week. After a harrowing fight with

our

> HMO about which doctors we could see we finally got some blood tests

done. I

> almost started crying when the doc said Grace's SED rate was 3. Also her

> platelets were 410, the lowest they've been since this whole thing

started.

> Compared with a SED rate of 86 and platelets in the 750 range last fall,

this

> is good news. For the time being she'll be kept on all her meds. We

> cautiously shared the info with our relatives ... they so much want to

> believe that this disease is still like the flu and that she's over it

now.

> I, on the other hand, am taking the long-range view -- enjoy like heck

the

> time when she's well, don't worry about her getting sick again, BUT, be

> prepared. Anyway, it's going to be sunny and 80 here today and after I

finish

> painting the bathroom, we're outside.

> N.

>

> ---------------------------

July 13, 1999

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

I think you've said that before, that it never gets easier, and that

is so true. Sometimes after everythyng's going well for a while, we sort

of do start taking it for granted that everything's fine. Then suddenly,

and a lot of times without any warning, it all starts over again. And the

flares are often just as bad as the original episode. Scary. Just when

you think you've got everything under control. Oh well. I guess that's

just the way it is. We really do need to appreciate the good times, however

simple, to the max.

Coady wrote:

<blockquote TYPE=CITE>From: " Coady " & lt;kacoady@...>

N.

Read you news about Grace. & nbsp; Glad to see SED rate was down. & nbsp;

I have to say I

understand about the relatives, just take it in stride. & nbsp; Enjoy

Grace's time

being well, we as parent's are always sitting on the edge, but you

know

what it never gets any easier, each time they flare we feel that we

should

have known that it was going to happen, but guess what after 10 years

it

still isn't any different. & nbsp; I take it a day at a time and take

the good

with the bad. & nbsp; I really want to say that I'm really glad that

she is doing

well now. & nbsp; Lots of Love, Laughter, and Prayers.

-Coady and Leigh-Ann</blockquote>

</html>

July 13, 1999

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

Your news is so terrific!! I'm happy that Grace is doing so well :-) & nbsp;

I hope it lasts like this & nbsp; ... indefinitely! Geez, the lowest SED

rate Josh has ever had was 28! So, you know I can appreciate your daughter's

results. It's probably a good idea to keep all the meds the same. Looks

like they've finally found the right combination to control all her symptoms!

That's great.

I know how it is for your relatives. A lot of people just don't understand.

They want to believe it's a one time thing and once the child has recovered

from the flare, that all is well. This is definitely not like the flu.

It's a chronic, long-term, and potentially disabling disease for which

there is no known cure. If your daughter is able to be symptom free, that's

probably the best we can hope for. Her treatment plan is working :-) & nbsp;

If and when there is another flare sometime in the future, and maybe there

won't be, hopefully you'll be able to get it under control quickly and

restore the equilibrium again.

Thanks for sharing your good news! And I'll bet the bathroom looks gorgeous,

now! What color did you paint it?

~Georgina

Jakuch@... wrote:

<blockquote TYPE=CITE>From: Jakuch@...

Dear All,

We had some good news about Grace this week. After a harrowing fight

with our

HMO about which doctors we could see we finally got some blood tests

done. I

almost started crying when the doc said Grace's SED rate was 3. Also

her

platelets were 410, the lowest they've been since this whole thing

started.

Compared with a SED rate of 86 and platelets in the 750 range last

fall, this

is good news. For the time being she'll be kept on all her meds. We

cautiously shared the info with our relatives ... they so much want

to

believe that this disease is still like the flu and that she's over

it now.

I, on the other hand, am taking the long-range view -- enjoy like heck

the

time when she's well, don't worry about her getting sick again, BUT,

be

prepared. Anyway, it's going to be sunny and 80 here today and after

I finish

painting the bathroom, we're outside.

N.</blockquote>

</html>

August 30, 1999

Leona,

You're right, we started about the same time. I started going down on the

prednisone in February, after I started azathioprine the prior November. I

went off completely the first of June. I have not been to a Mayo clinic. I

see the director of Hepatology at St. Louis U. This department was rated as

one of the top hospital departments in the country by US News and World

Report. Dr. Bacon is " the man " and he is an absolutely wonderful partner.

My secret? I wish I had a recipe for success in this, but I don't. However,

I can tell you that I do believe that there are some significant factors that

have made a difference for me (they won't necessarily make a difference for

others). The care I have received from this top notch doc has been very

important, I have changed my diet and eat very healthful, I take milk thistle

three times a day (who knows if this does anything but eat up my funds), I

drink a lot of water with lemon, I gave up alcohol except for special

occasions and what I believe to be the most significant factor in my recovery

is reducing my stress. I have cut the stress in my life significantly by

quitting my job, saying no to some of my usual activities, meditating, doing

yoga and other relaxing forms of physical exercise and keeping the pace of my

life generally manageable.

As I said, these things I truly believe have made a difference, but I do

believe that none of them are as powerful as the azathioprine and I am very

grateful for the meds and them saving my life. The above activities have

helped me cope with the side effects of the meds as well as get me off of

them. I hope you can get weaned off one or more soon.

Warmly, Roxanne

August 30, 1999

Roxanne,

Congratulations!!!!!

Eileen

AIH, UK

[ ] good news

> From: CREE8V1@...

>

> I just got back from my liver doc and my enzymes are still normal. I have

> now been off the prednisone for three months and am only on 50mgs of

> azathioprine. For the first time in years, I actually feel " normal " . I

> still need my daily nap but otherwise I feel good. My doctor and I hugged

> each other and we both feel really optimistic about my prognosis.

>

> Also, I wanted to share with you all that my husband, who is a video and

film

> producer, is volunteering to produce a documentary for the Midwest Organ

> Donation Organization. He shot the first segment on Saturday interviewing

> four soft tissue organ recipients. I am very proud of his efforts.

>

> Thank you to all of you who have helped me through this tough couple of

years

> to help me reach this point. The information and emotional outreach on

this

> list has really been my therapy for coping.

>

> Love, Roxanne

>

> ---------------------------

August 30, 1999

Roxanne, I'm envious. I believe we started reducing prednisone about the

same time did'nt we? I started in March but 3 wks after my last pill May

5th I started not feeling well. Dr did another biopsy Jul 30th after

increased lft's of lab results so now he has me back on 10mg with

intentions of reducing to 5 & there I will be forever. He increased the

azathioprine from 50 to 100 when I started decreasing prednisone & I am

still on 100. I hope that will be decreased eventually but he said we

will see. Someone in this group has been to Mayo sdale & I was

thinking it might be you. If so who was your Dr? Mine is Dr on.

I am happy for you & hope you continue well. Whats your secret?:-)

Leona M.

August 30, 1999

Hi all, welcome Nina! And congratulations Roxanne!!!!! That is wonderful

news... Thank your hubby for us all, we need to have someone big on our side!

I am not on treatment yet, but I hope ? to be soon. I will see my new GI on

Thursday. I really need to do something about this fatigue and terrible

muscle/joint pain!

I haven't shared much cause I'm still just learning, but I read ya'lls notes

every day. Thank you for the education, and especially for the comfort of

knowing that I am not alone...

(AIH)

August 30, 1999

Congratulations Roxanne!!

I am so happy for your remission...and also very happy that you have such a

great relationship with your doctor (by the sounds of it)! Stay well, and I

hope it's forever!

>From: CREE8V1@...

>Reply- onelist

> onelist

>Subject: [ ] good news

>Date: Mon, 30 Aug 1999 12:20:34 EDT

>

>From: CREE8V1@...

>

>I just got back from my liver doc and my enzymes are still normal. I have

>now been off the prednisone for three months and am only on 50mgs of

>azathioprine. For the first time in years, I actually feel " normal " . I

>still need my daily nap but otherwise I feel good. My doctor and I hugged

>each other and we both feel really optimistic about my prognosis.

>

>Also, I wanted to share with you all that my husband, who is a video and

>film

>producer, is volunteering to produce a documentary for the Midwest Organ

>Donation Organization. He shot the first segment on Saturday interviewing

>four soft tissue organ recipients. I am very proud of his efforts.

>

>Thank you to all of you who have helped me through this tough couple of

>years

>to help me reach this point. The information and emotional outreach on

>this

>list has really been my therapy for coping.

>

>Love, Roxanne

>

>---------------------------

August 30, 1999

Great news, Roxanne! I'm so happy for you!

Kathy (AIH)

Seattle area

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