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» LymeNet Flash » Questions and Discussion » Medical Questions » MS, Fibromyalgia, CFIDS, ALS, Lupus and MCS

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Author Topic: MS, Fibromyalgia, CFIDS, ALS, Lupus and MCS
troutscout
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(Could some MEN respond to this, please?)

I would like to start a thread on the multitude of mis-diagnosis we have all had.

My intention here is to keep this near the top for a while. WHY?

I am going to put some classified ads in several newspapers and send them to this site...

Who? Those with the diagnosis in the heading of this thread.

Why? So, they can have hope....a diagnosis that is not a dead end.

Lyme Disease...in my opinion will be very curable...to date it is a struggle..but, people do survive and go on after treatment...if caught in time.

It is the fact that so many of us were NOT diagnosed in time, to catch it in it's earliest phases...so now we suffer at a higher cost than we should!

Please join me as;

"Each one, Reach one." (Thanks for that momtoeight)

Editing here....one year later.
Go to www.ildf.info/page3 and see stories of other sufferers.

Trout Scout

PS..To those that respond..I am going to build website covering this, also. Could you e-mail me your first name, last initial and the state you are from...then I will do blurbs..showing all the mis-dx on each one of you.
------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!

[This message has been edited by troutscout (edited 16 November 2003).]


Posts: 5262 | From North East Iowa | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
troutscout
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Originally diagnosed with chronic fatigue syndrome in 1991 and later diagnosed with Multiple Chemical Sensitivity/Environmental Illness....I seemed to over come the CFIDS thru chinese herbal remedies....however things kept changing.

My demeaner changed...irrational, obsessive and sometimes a tyrant...very suttle changes over time.

Smells would make may voice change. Singing in church became harder due to perfumes.

Irritable bowel syndrome came along with the CFIDS...strange the doctors thought.

Pleuresy, popped ribs, sore tail bone, and the chiro's kept telling me I was 'hyper-flexive".

3 years ago...my neck became very sore...treated for a sinus infection and it went away.

Next...prostatitis, irritable bladder and eurethra...lack of sex drive....in fact, I even quit dreaming.

Chemicals and allergens were actually making my nerves twitch...sometimes burn. Felt cobwebs in my hair...nothing there.

My knees would hurt. I kept tripping-all the time. Biting the inside of my cheeks. And one week....saliva poured out of my mouth.

I started tasting soap...every time my wife would wash the dishes.

Through all of this...a constant sinus infection....resulting in 2 major sinus surgeries.

Finally in late summer of 2001 I became so affected by smells and allergens of any kind I became a self induced recluse...living in the brick block room of our basement.

Then it hit hard. I didn't sleep for 2 weeks straight. For 4 days it literally felt as if my body was "on Fire", a living hell.

Then in October of 2001 while visiting my mother after her neck surgery...I woke up completely paralyzed from the neck on down. It lasted only 15 minutes...long enough for a life time. Went to the ER...they told me Fibro-Myalgia and gave me Celebrex for the pain.

We couldn't use the heat...left over fuel in the vents would burn my nerves, so we resorted to electric portable heat...gasoline, exhaust, perfumes, dust, everything bothered me.

Along with a nagging feeling....somehting was causing it and the Doctors couldn't figure it out. They ended up telling me I was Obsessive Compulsive and had tried to get me tested for it....no way.

Kept on searching...and found the answer. Turned my life around.

I WILL WIN>

And, so will you.

Trout Scout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!

[This message has been edited by troutscout (edited 12 November 2002).]

[This message has been edited by troutscout (edited 14 November 2002).]

[This message has been edited by troutscout (edited 14 November 2002).]


Posts: 5262 | From North East Iowa | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Lyma Bean
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Great idea!!!!
I'll start
CFS, fibromyalgia, psoriatic arthritis, and my all-time favorite: my EM rash was a FUNGUS
By the way that is Mom-to-10,ooo's saying

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troutscout
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By the way that is Mom-to-10,ooo's saying

Thanks...Beano,
Changed it.

Trout Scout


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graneet
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Okay here goes:

Began having shooting pains up my back with sudden heart palpitations and then light headedness and extream fatigue. Figured it was due to the low carb diet and age.
Doctor said my bp meds had to be changed.

Weakness began, lack of sleep, would wake up with sever muscle cramps could hardly walk.

It was summer and i began having rashes never thought of lyme. I was given steriods first the seven day that didnt help then the shot and stronger pills. This happened three times that summer.
I even got a rash all over my back i was told i had filiculitus and given abx it cleared.

The next year that summer it all began again. Rashes pills shots steriods and yep another bout with filiculitus. Fatigue was increasing.

Sinus colds were increasing i ended up with a sever cheek pain and in dec the doc said sinusitus gave me abx. two days after i finished i ended up with a numb feeling down my right side.

Was sent to a neuro. said it was tias.
Went back to my gp i was sent to a rheum who said it was fibro.
I began researching the computer and found lyme symptoms.

Two years after getting sick and body finally crashing i found i had lyme.
Was on heavy meds for seven months but due to the thirty day your better thing i quit meds. One year later i get so sick and go back and get a wb with nine bands. Guess thirty days dont work . Now i cant seem to get better.

I have had all the symptoms possible. I went to the doctor soon enough but fell threw the cracks because ohio dont have lyme. We dont have it because people with lyme have to go out of state to doctors who knows what to look for.


thanks

[This message has been edited by graneet (edited 12 November 2002).]


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troutscout
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top it
Posts: 5262 | From North East Iowa | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
henson2
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Hi,
Yes, a good topic idea!

No one could come up with a diagnosis for me, except the term "chronic fatigue syndrome," which is what they say when they don't know what you have.

I had bone crushing fatigue, cognitive difficulties, mood swings, muscle pain, and chest and rib pain, as well as constant, low grade fever. I also had some rashes, but they got dismissed. I even had one postive Lyme ELISA test that was deemed a "false positive": my doctor gave my doxy for 2 weeks, thinking it was Lyme, but when I didn't get better in those 2 weeks (and felt worse) he said it couldn't be Lyme.

I was thus given the CFIDS dx. It was more than five years before an angel I met socially told me to pursue Lyme, and directed me to Dr. D.

I really wonder how many people with "CFS" have Lyme. Especially women, because new research shows that women produce less antibody to the Lyme bacteria than men, and women's Lyme titers thus come out negative more often when they actually have the disease.

Anyone with a diagnosis of CFS should be urged to find a Lyme Literate doctor, someone who knows the research on Lyme.

Thanks for putting this out there!
Healing and wellness to everyone.


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cootiegirl
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Excellent post because I too am a misdiagnosed CFS/lymie-babs. And believe it or not, it took a chronic fatigue specialist to make the lyme/babs diagnosis! I am eternally grateful to him.

My symptoms became their worst the Fall of 2001. Of course my health care provider diagnosed me with depression because I was crying in her office (gee ya think it was because I was feeling so crappy and didn't know what was wrong with me??)and put me on celexa. Then I was diagnosed with perimenopause (all women in their early 40's are fatigued, forgetful and depressed, right?). Next I was diagnosed with Wilson's Thyroid Syndrome because I had very low body temp (same duck). Routine bloodwork done, showing nothing (no big surprise there), and no thought on my duck's part to climb outside the box and test me for other things. Was sent off to a rheumy and he tested me for lupus and arthritis - nothing there.

By summer 2002 I had enough of not knowing, so through my own research I found a CFS doctor and he said I definitely have chronic fatigue, but more importantly I have lyme and babs - he had the smarts to do extensive bloodwork. He wanted me treated for babs and to have the treatment monitored by my hometown care provider. Back to the duck I go - she refuses to administer the mepron/zith. After a consult with the CFS doc, she agrees to put me on low dose doxy for the lyme (oh yeah, that really worked!).

Through more research I find a terrific lyme literate doc a few hours from home and have just gone under his care. I think I walked out of his office six inches off the ground - he understands and I know I am going to get better!!!

Even tho the brain cells aren't firing that fast, I finally figured out that it's time to find a new primary care provider in my town and ta-dah! I got a good one! She isn't lyme/babs literate, but very willing to learn, research, and work collaboratively with my lyme doc - she loves a challenge. I think I am in a good place right now.
cootiegirl


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cootiegirl
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Bumpin' up to the top! Would like to hear more on this.
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Lymiegirl
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OK, here goes:
Initial rash and "flu-ey stuff" diagnosed as reaction to sunscreen and probable overexertion leading to mild flu while on hiking trip. (Rash lasted THREE WEEKS, even after discontinuing the sunscreen immediately....quack, quack, quack).
Then, wild menstrual irregularity and mood lability....tried to diagnose as Hypothyroidism, tested five times but always normal...hmmm?
Then, acute diarrhea that lasted for months with 20 lb. weight loss, extreme fatigue, soak-the-sheets nightsweats, muscle twitches, headaches, muscle cramping, wandering arthralgias///then, slow heart rate followed by persistent arrhythmia, joint swelling and crushing pain, urinary urgency, seeing "halos" around lights, extreme sensitivity to sound...went through extensive ID work-up and immuno workup and neuro workup....told a whole "laughing bag" of ridiculousness....IBD/sprue, MS, Lupus, CFIDS, I-dunno-what's-up-with-your-heart....told by an ID that all her tests were negative, and that I likely had FM, when, in fact was POSITIVE for EHrlichia and Lyme...she just didn't tell me until I requested the records to go see an LLMD and found out by reading the chart..when questioned, she just said that "those are frequently falsely positive, so I didn't consider them important"....then, seizures and parasthesias and myoclonus...must be a BRAIN TUMOR or vasculitis(!)(the "three stooges" neuro-docs)...Hey, let's give you STEROIDS?!!@#&!@$^) Uh, no thanks boys and girls, I'm off to the LLMD....finally diagnosed with Lyme/Ehrlichia/Babs/Bart and have been under care of Dr. L ever since. I truly think that if it weren't for him, I would have been killed by the idiots who wanted me to get a brain biopsy :eek I am SO not kidding, here) and give me steroids. Took from Jan. '99 to October '00 to get diagnosed and start proper treatment, and here I am with you guys. Now finally have real doctors that actually help out instead of hinder my treatment with Dr. L....two neuro docs, one cardiologist, one family physician.....and "a partridge in a pear tree"...LOL! Went to a Rheumo-know-nothing-tologist recently, (like, WHAT was I THINKING?!), who basically denied all Lyme/TBD stuff, saying that I "definitely didn't have Lyme, but did have 'reactive arthritis', but the cause was unknown".... Did get another opinion by Dr. D, who SO validated the Lyme dx....I can recommend Dr. L and Dr. D for anyone out there who is "swimming in the raw sewage" of the medical community, hoping that some doc will finally diagnose them.
OK, my rant is over....to the top, sports fans.....Bestest, LG

------------------


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Lymetoo
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Here's my story, and I'm stickin' to it!
Was misdiagnosed with Fibromyalgia 20 yrs ago. http://itsmysite.com/lymetoo/

------------------
oops!
Lymetutu


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troutscout
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Hey TuTu!!!!!

I love your site!!!!!!!

T Scout


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Rita
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Several of us believe these are all different strains of the same disease... Bb.

------------------
www.lyme.org www.lymenet.org www.lymealliance.org www.lymeinfo.net/lyme www.geocities.com/ldbullseye


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Lymetoo
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Thanks, Trout! I was a little embarrassed to post it because there's not much to it. I haven't had time to work on it. My thanks to dt for helping me with it!

------------------
oops!
Lymetutu


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troutscout
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to the top for new members
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lymebrat
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Hi Trout.

I too was misdiagnosed. I wrote a poem about me and my Lyme disease. I'm not sure if this is what you are looking for, but it tells my story.

If you want me to send something else, just let me know.

Here is my poem:


LYME DISEASE & ME

I wrote this little poem, as I want the Doctors & Center for Disease Control to see,
What their ignorance, and lack of education, has done to me , and my family.

My Lyme Disease nightmare started with a Bullseye rash on my leg.
It didn't hurt or itch, but it wouldn't go away.

So I went to my doctor, who said he wasn't convinced that I had Lyme.
But he put me on 3 weeks of antibiotics, and assured me that I was fine..

Well, I took my medication, but I was still tierd all the time
My hands began to ache, and my memory..
I could not find.

I began to stutter, and walk with a limp, so my doctor though I might have M/S.
So I endured, an MRI, Lumbar Punctures, and even more Blood Tests.

The tests all came back lyme positive, and it looks like it's in the Late Stage.
So he gave me 6 weeks of Biaxin, and for a few weeks my pain...did go away.

But a month went by, and the pain came back, and I now have new aches and pains to add to my list.
So my Neurologist sent me to an Infectious Disease Specialist.

She seemed to doubt my symptoms, and thought the pain was all in my head.
She said I didn't have Lyme, as the test now came back as Negative.

I told her that, it was She who was Crazy, and that My Pain Was Very Real.
And as I went through my list of symptoms, I wished she could feel the pain, that I feel!

The things I use to love, like a picnic at the ocean, and going hiking with my family,
Or working in the garden planting flowers ...now seem like chores to me.

I want to laugh, and sing, and play all day, with my Daughter, and my Son.
But these Lyme Parasites inside me, only causes pain, and rob me of this fun.

I want to wake up in the morning, and feel alive, and pain free
And so, I keep on taking the medication, and Pray for victory.

My Son said `` Mommy why did the Tick have to bite you,& make you feel so bad?''
``Didn't he know you're my Mommy, and seeing you in pain makes me Sad?''

They want me to be like their `` Old Mom'', the one who liked to Play, and Play, and Play.
Instead they have a Mommy who takes Antibiotics, and Pain Pills, to help her through her day.

I went from Doctor, to Doctor, to a Neurologist,
who sent me to the Infectious Disease Doctor, who didn't think that I was Truly Sick.

So I begged my PCP,
to send me to a LLMD.

He said I definitely have Late Stage Lyme Disease.
And he put me on an antibiotic regimen.

I will be on the Antibiotics, for at least a year, and I pray that, then I will be cured!
So I CAN BE That HAPPY HEALTHY MOMMY, LIKE I WAS BEFORE!.

BY: Missy , in New Hampshire

(When I become well, I will lobby for better lyme disease awareness, So other lyme disease patients, and their families might never know our suffering)

Take care everyone!! Missy

[This message has been edited by lymebrat (edited 24 December 2002).]

[This message has been edited by lymebrat (edited 24 December 2002).]


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troutscout
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Thanks Missy!!!

Kent


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Caryn
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i've typed my story so many times, i won't post it on this thread. all the things that you kiddies are saying sounds all to familiar t what i went thru. the upenn drs were making fun of me when i was at deaths door. evil people.

i was going to do a seardh and post on cfs websites, fibrmyalgia, m.s., camping weblstes, gardening, websites geared toward children. but i don't have a computer at home and have limited time at the library, so there is no way i can. i have posted stuff on the jefferson starship webstie. i'm a big fan of their current incarnation. Paul said he would do more songs with the banjo this year so i am looking forward to seeing them when they are in town.

people there think i'm crazy, but some people have emailed me for info. it is so so rampant where i live. now that i know what it is, i see that most of the people we know have lyme. they mostly have mild lyme syptoms, but even the ones with severe fibromialgia or m.s. just are not listening to me. they rather hang on to their misdx an dsuffer. mystery to me. i was just talking to the lady sitting at the computer next to me. she has a dx of ADD and bipolar disorder. i asked her zbout other symptoms and it appears ovious to me she has lyme. she told me about her daughter and it sounds as though her daughter has it too. she was very glad she met me and took the info i gave her including reccomending this website.

i have such great stuff in my records. roger neimans , an evil i.d. in abington pa saw me when i was gravely ill. he hardly did an exam, kept me waiting in the waiting room for a long time even though there were no other patients. first thing he daid to me was "i bet you have been reading about lyme on the internet. i can't believe all the rediculous stuff that is posted on the internet about lyme" - not his exact words , but close enough. he only wanted to here certain info like what pos lyme test did i have. only the luat at the time and many drs don't recognize that. he was not interested in my symptoms , just kept pointing to his clock "time, time , time). in the very brief exam, he kept taping at my ankles because i have no reflexes. that is not noted in my records however. i had a reccuring rash on the top of my foot and showed him. he dismissed it as nothing. wrote in my records that it could have been the rash of lyme. of course it is! in my records attacks the locl doc who dx me, the luat as a scientifically invalid test, and writes "no dr ever saw th erash and she has no photos of it. " said i did not have an active infection if in fact i ever had lyme. two weeks later, another dr did a pcr of my spinal fuid and it came back pos. there was no missing that i was very sick with an active infection. 6 months later in a newspaper article , he states that he never saw a patient in PA with babesia. he saw me! nantucket island is teeming with bbesia. he goes after dr B in the article. is quoted with the usual infectious disease dr bull crap that it is over dx, overtreated , etc.

the upenn dr i saw faked doing the luat, but had his office staff call me a wk later and told me the luat came back neg for lyme. he would not look at the em lesion on my back, but his nurse sacastically recorded it in my records as a "bite".

i have such great stuff in my records. i have unwittingly recored this disease in photos. vacation photos from our two visits to nantucket island. photos of my sick son as a newborn with eyes swollen with edema. my long beautiful hair now thinned and in bad condition. pictures of me hardly able to hold my head up. pictures of me comfrting my obviously sick daughter after our first trip to nantucket. pictures of me with dark circles under my eys. i even took pictures of the condition of my house.

if anyone has any connection with the media or a documentary film maker, let me know.


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lymebrat
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Thank you Kent, for giving me a place to share my Lyme Story!
~ Missy

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troutscout
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Powerful stuff Caryn...

Just a note. I am taking steps in other avenues that will take a while...probably longer we would all hope.

As these come about, I will let you in on them.

It is to your benefit that I can verbalize our plight as Lyme sufferers to the point of making others cry in pain. This will be my greatest asset in trying to further our cause. On the flip side I can also present this disease in a common sense...sorry, I can't refute what he's saying...way.

I have to learn as much as I can...from all of you before I can make these things come to fruition.

I also have to heal myself.

My vision is of an Institute that will one day actually give dx scholarships to those who suffer without proper care, dx, and treatment.

It is my firm belief that this CAN and WILL be acoomplished. It is just a timing thing.

When the timing is right. I will let you know.

However, I will need a VERY firm commitment from those involved(on this site)...healed, or not.

We WILL have insurance...we will win a class action lawsuit...we will be cured.

Just HOLD on.

Kent

The Trout Scout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
My New Website For Lyme www.ildf.info

[This message has been edited by troutscout (edited 03 December 2002).]


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TX Lyme Mom
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quote:
Originally posted by troutscout:

We WILL have insurance...we will win a class action lawsuit...we will be cured.


TroutScout,
I think we need to open up a topic in "Off Topic" where we can brainstorm freely about class action suits and other similar ideas.

I'd like to add something else to the list -- namely, and investigation into possible "price fixing" in the pharmaceutical industry and in the home health care industry.

I'd also like to collect a list of self-contradictory remarks made by A.C. Steere and cronies, taken directly from their own published writings.

I think we could have a lot of fun doing it. Maybe we need more than one topic going, though, so that we can keep our ideas better organized into discreet unit/topics.

Another idea, TS, is if you would post something in the Computer Forum telling us how you learned to set up a webpage. I was browsing in B&N this afternoon and resisted the temptation to purchase the paperback book about "Webpage Design for Dummies."

OK, if/when the spirit moves you, then "Let's roll." OK? (You can just reply here, though, for convenience if you aren't ripe for any of these ideas right now.)


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troutscout
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The website wasn't too much to do....I did it thru yahoo/geocities....need a yahoo mail account...they are free...they show you how to do it....very simple tools, etc.

TXMom

I'll see in you off topics.

Trout Scout
Editing here;
Me wife is painting our downstairs rec room...sorry got to go...will start chat on Off topics later..OK?

I believe that first we need an objective to go after...who is the weakest link to have in a law suit?

Secondly....how do we keep those who find out where we are planning this from attacking us under false name and throwing it all off?
Kent

[This message has been edited by troutscout (edited 03 December 2002).]

[This message has been edited by troutscout (edited 03 December 2002).]


Posts: 5262 | From North East Iowa | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
rosesisland2000
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Hey TexasLymeMom, check out my post over in Off Topic.

Did you know that the new Homeland Security Bill just passed has a something in it about the class action lawsuits against pharmaceutical companies? Guess who's favor it is in?


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lymebrat
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To The Top!
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bpeck
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I was (mis)diagnosed in 1979 with Lupus when I was 30 years old.
It's JUST NOW been reversed as I've tested positive for Babesia.
I don't even want to rehash the hell I've been thru for the last 27 years.
Barb

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lymebrat
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To The Top !!!
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rosesisland2000
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up

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troutscout
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Hey Rosie...I forgot all about this one.


I even printed it...I will use this on my website (MY description)

Trout


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Naomi
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Hey all! Here is the VERY brief version of my story Let me know if you need more details.

I am 27 and have been sturggling with my health for the last 7 or 8 years. I went to all kinds of dr's and got all kinds of different answers. Several thought I was off my rocker because my bloodwork didn't show anything wrong (they didn't think to check for Lyme)...I actually had a doctor write me a Rx for Prozac because he thought it was all depression. (in hindsight the prozac probably would have helped me deal with the ducks!) Then I had mono, then it was Chronic Fatigue Syndrom, then it was Fibromyalgia...finally someone figured out that I have late stage Lyme Disease.

Anyway, I have all the same stuff that most of you do...the aches and pains, insomnia, brain fog, a few heart problems. BUT, I am in the middle of treatment and hoping to be well soon. I have been on antibiotics for 11 months so far. who knows how long to go.

I hope this helps you!
Naomi L. Boston, Mass


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Lishs mom
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I was diagnosed with MS. I was later diagnosed with Lyme. My primary problem that I have had is peripheral neuropathy. I was noticing numbing and tingling in my arms and legs. this was followed by moments of "black out" in my vision. The vision errors lasted only for about three months before they disappeared as mysteriously as they started.

Shortly after that the headaches became more frequent, weakness in my arms including dropping of things became my problem.

I was re-evaluated and the muscle testing showed significant left sided weakness adn the doctors told me I had ALS, not MS. My best friend down the street was daignosed with lupus at the time.

She moved to Hawaii where her diagnoses was changed to Lyme. When she visited several years later, and heard my daughters story (new story here http://flash.lymenet.org/ubb/Forum6/HTML/001055.html ), she told me she was sure my daughter had lyme. I didnt tell her about me, but wondered in the back of my mind.

When my daughter was tested came back positive (Igenex, Quest and MDL- bowen negative) and I came back positive Quest and Bownen, Igenex negative).

WE both began began treatment and have improved significantly.

[This message has been edited by Lishs mom (edited 16 November 2003).]


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aaronkatie
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Misdiagnosed since childhood i guess, i used to break out in rashes all the time, hmmm could that have been a clue. But no that was allergies and asthma. Then when I could barely get out of bed due to fatigue and i had bells palsey symptoms - that was depression cause my dad abused me.

Then again with more paralysis of arms I was told pinched nerve and herniated disc. And about 10 years later Fibromyalgia, then Chronic fatigue and Myofacial pain syndrome all the while saying i probably have MS or Lupus it just wasn't coming up on tests.


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Lishs mom
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Lymetoo
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Up for deedee
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Cucamonga
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I think I got bit in 1986, but it could have been earlier...don't remember rash, my momremembers I got all over rash...we thought it was from eating strawberries. I proceeded to get every symptom except for one: Testicular pain (I'm a girl). I gained a ton of weight, I lost my libido (even asked my shrink if she thought aI was lesbian, cause all of a sudden, I DIDN'T WANT A MAN!!!) Hair falling out, confusion, no memory (used to be an actress, all of a sudden, could only do voiceovers)...in 1997, while travelling in Europe, I smoked and drank wine for a month, and when I came home, I went numb to my legs, and that's when the MS scare started. I knew I didn't have it (also used to be a singer, and singers know their bodies), Made the mistake of going to LD docs at hospitals, they all said MS, MS, MS... HA!! Finally found a LD doc (who has since stopped treating LD patients), did 9 mos IV doxy, but after that only one mnth of doxy pills...he didn't want me to do more. Went on another search, did homeopathy, Zhang, and now my great doc that has me on different abx every few months. I want to try Dr Kane's protocol next...WE'LL BEAT THIS THING!!!
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tkr
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unknown auto-immune disease - spent 10 months on immunosuppresant therapy due to persistant uevitis, optic nueritis, hearing loss-those were the only things they could "see"

all my other symptoms they considered constitutional symptoms (joint pain, muscle twitching, memory problems, depression, panic attacks, insomnia, fatigue, irritability, heart palpitations - y'all know the list :-)-

they finally settled on "fibromyalgia" and told me to "do some things for myself" "exercise" "find some hobbies you like"

I said "WHAT!" so, getting lost while driving my car and forgetting to buckle my child in his carseat and forgetting who I was talking to on the phone while I was on the phone with them - THAT will get better with exercise??

My questions to them-

me: What about that strange bite and rash I had before all this stuff started?

them: well your Lyme test was negative so definately not Lyme and even if it was you have had enough antibiotics to "cure it"

me: Why doesn't my uevitis get better on this immune suppressing drug if it is auto-imune?

them: no answer, silence

me: How come I get more wierd symptoms as my dose of this wonder immune suppressing drug increases?

them: no answer.

2 years of antibiotic therapy and my optic nerves are perfect, uevitis gone, hearing loss restored and many many of my "constitutional symptoms" have cleared.

A feat that 10 months on the premier auto-immune wonder drug could not accomplish...

:-)


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Lishs mom
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to the top
Posts: 1918 | From Central, Oregon | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
bd
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According to some of my old medical records the rash was ringworm and the aches likely polyalthralgia.

Later they added MVP, Severe allergies, Acid Reflux, Migraines, IBS, shin infection, etc.
By the time someone told my I might have lyme disease I had blood in the urine and blood for BM (turned the toilet bright red). The ducks said I had small tears in my lower intestines leaking blood. Nothing to worry about. (Really!!)

The dentist said he would not work on my teath unless I was on antibiotics. He said my gums were bleeding all over and I had a serious infection!! He really upset the ducks!

My chiropractor said that I had something wrong with me I was covered in a strange rash and he could do nothing with my neck and left foot. He did not dare challenge the ducks though.

I change ducks three times and finally agreed to see a shrink as I was obviously just depressed.

I purchased doxy through a animal supply place, and stayed on it for over a year. I added Flagyl, garlic, silver water, bismuth, and quinine. By then I was fairly healthy.

Now I just use a low power Doug Coil device for the aches and pains. However I am still having problems with my gallbladder I think....


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babyboo099
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I am fairly new to this board & undiagnosed with LD.......but feel as if this IS what has been going on in my broken down body for at least 12 years, if not longer.

I am 28 years old and have been dx with:

Fibromyalgia, myofascial pain, migraines, tension headaches, IBS, depression, DeQuervian's disease, endometriosis, major adhesions in abdominal area, osteoarthritis in knees, neck sprain (ER docs..aren't they brilliant?...yeah right, I was sitting in a chair when pain came on suddenly with the force of a sledgehammer), torticollis (wry neck...see above dx...for which I am now going to see a cervical surgeon @ WashU in St. Louis for next week!...He seems to be very interested in my case because this is so "unusual"!...was told I may become a case study...if I do, maybe it will shed some light on LD?)

I was 8 weeks from graduating from nursing school when I had to drop out indefinately because of the torticollis.......

This is the reason that I am in nursing school...as to help others who have needlessly been victimized by these educated idiots ducs that are just "genius"!

I plan on going into research...

I have had all symptoms except testicular pain + quite a few more.

Has anyone ever lost all feeling from elbows on down, hands curl up, feel like you are having a stroke, lose partial consiousness, get real sweaty and tired, then after about 2 hrs feel like your usual crappy self?

I just found Dr. C & have an appointment with him in Jan....Yeah!!

I hate this...it makes you feel like you are 90 yrs old and fading fast!!

We will beat this thing and give it the recognition that it needs....so that NO one else will have to go thru all this just to get properly dx & treated!

Thanks for letting me vent...

------------------
Stacey


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bgnrsmnd
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DX-CFS '95
Age-30

Many neural/physical symptoms--mostly stacked up in my right side. Male specific, I would guess testosterone production is weak at best. Have presented with testicular pain.

Began thinking that a monk's life was pretty easy--'what's so hard about celibacy--hell, sex isn't even appealing anyway' Took me awhile to figure out that was a problem, Now that my brain is coming back I'm remebering that life used to be A LOT better. I didn't say I was smart.


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daystar1952
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Here's a link to an article I just wrote on this subject.

"What Chronic Illness Have You Been Labeled With?" www.rense.com/general44/chron.htm


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minoucat
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up
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dsiebenh
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Started feeling bad in about 1992 - optic neuritis, digestive problems, leg twitching, fatigue. Diagnosed with MS in 1999 after years of confusing doctors. ELISA test was negative, so the Dr. said I could not have Lyme! Now I know, 5 years later that the ELISA is completely useless.

More fatigue, worsening leg function, depression. Avonex immunosupressive therapy (3 years) caused me to feel worse. 1 year of Gamma Globulin IVs did nothing.

Read an article on misdiagnosis of Lyme as MS. Had myself tested by Bowen and tested positive! Got myself to an LLMD immediately who is certain I have Lyme and has started me on an agressive course of antibiotics.

My recovery will no doubt be long, since I have probably been infected for about 12-14 years. But at least I now can have a little hope.

An MS diagnosis is a "garbage can" diagnosis, based on symptoms only. I strongly urge all "MS" patients to be properly checked for Lyme thru a competent LLMD and an accurate Lyme testing lab.

You and you alone are responsible for your health. Most doctors are too busy to properly understand your symptoms and Lyme. Once a diagnosis has been made, no one will ever question it and everyone will treat your MS in the future, ruling out any other possibilities. Get properly tested!

Dave


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JillF
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I am 28 yrs old. I now realize I have had symptoms of Lyme for several years. It started getting worse after the birth of my first son. Less than a year after my son was born, my body just went bezerk!

Some of the symptoms I had in pregnancy (memory/concentration problems, sleeping problems, clumsiness and loss of balance, name/word finding problem, slurred speech and dyslexic-like speech, etc), I thought was BECAUSE of pregnancy.

This time last year I first started out with severe stomach twitches (that didn't hurt - thought I was pregnant again at first). I couldn't sleep at all and hadn't been able to for about 2 yrs. Then the entire body twitches started and soon turned into twitches AND spasms (and the spasms hurt like hell). Then the myofacial pain, teeth pain, jaw pain, headaches. The spasms turned into stabbing and electric like jolts. I had restless legs for a few weeks. My hands started to tremor. My joints ached, my bones ached, even my organs seemed to ache. My ribs (take the entire area where the ribs are and wrap around the entire body) felt like they were beaten and kicked. It hurt to be touched almost anywhere. My lungs felt 'weird' - like I wasn't getting enough breath, like I was breathing in really cold air and almost like they hurt. I had chest pain - first time I thought it was a heart attack. My breasts hurt. My stomach hurt. It hurt to grasp anything in my hands and then to re-open my hands. My back ached. I became sensitive to the sun - body-wise and vision-wise. I had flu-like achiness and illness for a day, three different times in one month. I would lose my temper much more easily than ever before. My vision started going: floaters, spots, weird dark lines, sensitive to the sun and artificial light, over-extended vision, major problems with night vision and sometimes feels like sand is in my eyes.

Years before all this, I had noticed that I had a loss of balance, was clumsy alot, tired alot, my legs felt fatigued or heavy - so I sometimes stumbled because I did not pick up one of my legs high enough off the floor. I had night vision problems and problems driving at night. I had concentration problems, memory problems, word and name finding problems, slurring words, dyslexic-like talk with words and sentences, problems spelling and writing, etc. I never thought anything of all my early symptoms.

To be truthful, I thought alot of my memory problems, concentration problems, speech problems were due to my extracirricular activities in highschool...

So, the minute the spasms started, I went to see my primary doctor. She said she thought it was a virus and told me I was fine. My symptoms got worse, worse in general and worse in pain. I went to see my primary again and completely lost it in the examining room (I had been reading about ALS and MS on the internet). The doctor labeled me with anxiety and thus began my fight with anti-depressants and their terrible side effects. My doctor sent me to the neurologist 'just in case' but she thought it was just anxiety and a virus.

The neurologist said I was fine and to call him if I had further symptoms. When my symptoms became worse, he tested me (EEG?) and said I was fine, had nothing neurologically wrong with me and said it was probably a virus and anxiety.

I had read about Fibromyalgia and my next visit to the primary doctor, asked her about it. She said I was not in enough pain. I told her that something was wrong with me, she said it was a virus and anxiety.

I went to the ER because every time I swallowed I thought I was choking. They gave me a shot of glucagon and that was that. Still have problems with swallowing but not so bad.

I had my chest pain for the first time and had to see another physician at my primary's office (my doctor was out of town) and he said it was not heart related and sent me for xrays. He called later and said there was a little inflammation and to take tylenol.

I started having floaters and spots and called my primary's office to see if I should come in and see her. She was annoyed I had called and told me to see my regular eye doctor.

I saw the eye doctor and he said nothing was wrong and it was probably anxiety related.

I went to my old family physician and he said it was probably Fibromyalgia, but to get tested for MS.

I went to my son's pediatrician (also a general practitioner and internist) and she sent me to a Rheumatologist.

The rheumatologist said I had 16 trigger points (of course it hurts almost anywhere you touch) and I had Fibro BUT that most of my symptoms (including my fevers and 95 CRP rate was not common with Fibro) were NOT Fibro related. She said I definitely did not have Lyme. She also said I had extreme anxiety and panic attacks (I have NO idea where the panic attacks came from - never had one in my life). She tests me for Lupus and Rheumatoid. I am borderline Lupus. She gives me a second test and am negative.

So, I keep researching things myself since I realize no doctor is going to help me. I find an article about Fibro being misdiagnosed for Lyme and I email the author. That is how I found LymeNet.

I go armed with facts and documents to my new primary physician (my son's pediatrician) and she says, let's get you to a LLMD. She is VERY interested in this and reads some of the info I gave her. Thank God! Hopefully, she will soon become an advocate.

So, now a year later, I see a LLMD, Dr S in Chadds Ford, Pa. He takes a look at my past test results and says that I haven't been tested correctly for Lyme or any coinfections. So, he tests me. Still waiting for my test results....

[This message has been edited by JillF (edited 28 May 2004).]


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kissis
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My First symtom was right after first child was born 15 years ago, left arm pain with instatainious blured vision with it.Thought it could have been nerve damage from epideral?The pain progressed over the next few years and I noticed that when I would dance witch I used to lov to do... well I just would seem to miss the beat.Then when I would exzerte myself like playing tennis or running on beach I would have foot drop on my left foot.
I had a few drinks one afternoon and I was walking fine one minute and then suddenly just fell to the ground.New then that somthing was horribly wrong.Went to a neroligist who told meHe was most certain I had M.S.After running MRI and evoked potentials.I got a second oppinon at the Cleavland Clinic,basicly they ran the same bogus test and they confirmed what the other Duck had said.So stupid me just goes on and deteriates over the years thinking she has m.s.and that is that.over the years I have tried all the ABC drugs for m.s. and did the steroid thing for awile,all those did was make me feel worse.
So fast forward ten years and Im taking gobs of zanaflex for stiffnes /spasticity ,terrible gait and my walking continued to get shorter in distance to where I was geting weaker as it was progresing.I was talked in to having surgery for insertion of a baclophen pump to help my spasticity by my nero at the time.So I had that put in and what a nightmare that turned out to be.Year later,finaly had it taken out,but the surgery's really did a number on me,so ever since then I have to use a walker in house for my balance. and the surgery left me with constant ear ringing.

So after declining to needing wheelchair when I go out to strugling to use walker in house I decide to go to alternative homapathic clinic I have read about,they were the first and only Doctors that ever tested me for lyme wich came back possitive.They told me there that they thought the lyme and varios virusis I carried;Epstein Barr and herpies were giving me the M.S .symtoms.I was blown away and overjoyed to say the least.
After being treated there for 3 weeks I.V. and hyberbaric chamber daily I did see improvment but it was very expensive and very short lived.

I started to research lyme on internet and found this wonderful site,Found myself a LLMD and have been recieving oral abx treatment now for almost 8 monthes.Im just now starting to see improvments,balance is getting somewhat better,would lov to ditch the walker soon for a cane!My stiffnes is stil there but has also improved and my energy has increased and I dont get so fatiged walking or standing like I used too.The ringing in my ears has quited somewhat too.I just thank God I have finnily figured this all out and hope I contiue to improve and get some funtion and my life back again.Keeping fingers crossed ,Terri


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woodslyme
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Thanks for your research - I was diagnosed (finally something/) with Fibromyalgia 20 some years ago - had many problems with depression even to the extent of wanting to commit suicide even though I had much to live for, but still have to fight to endure the emotional pain sometimes that seems to come out of no where, like one big chemical drop - now have so many of the symptoms - IBS making it constantly difficult to eat much - numbness in hands - legs - can hardly ever sleep decent - used to have nighmares extreme nearly every night - vitamins seemed to help that -The fog of the brain - concentration , memory made me have to give up college several times I tried - fatigue became so bad spent years having to struggle to get done what was needed getting kids to school, meals, etc. than collapse again., so exhausted never able to be with my husband and family just enjoying little things because I felt so sick - went through allergy testing - treatment didn't seem to help much. My husband went to be with the Lord a little over a year ago - a very patient, gentle man I miss so much - hardly anyone else seemed to believe something really wrong, not just in my head since tests didn't show any of the medical society's usual diseases.
Began to see Lyme Dr. a few months before my husband was called home, and he could see definite improvement so tried to keep me going even though expensive and not a PPO, and he had doubts about the effectiveness , and worried about all the antibiotics -I have headaces a lot - flu like symptoms, sweats - anything I could endure from the Rheu. medications caused awful colon blockages or some side affect even if it seemed to help the depression. The first one given caused so much more depression I nearly left this world - only the Lord, and a supportive family kept me going. I still have to keep juggling these antidepressants to keep going - and pain pills, and something to sleep etc. The body seems to just keep falling apart more and more. The antibiotics just don't seem to keep giving any progress - afraid the LLmd even about to give up on me. His hormone test showed low in several things and the cortisol has definitely helped the extreme exhaustion - the others -test. DHEA. seem to cause so much facial hair had to give up except in small doses - use to have terrible PMS symptoms too that seemed to get worse and worse - some horrible yeast infections. A Christian man I really came to care about I think really just left because he couldn't handle it, even though he said he just didn't have peace about it - the emotional problems at times - crying for no reason, etc. are hard for anyone to deal with- The pain of rejection because of something I can't seem to do anything much about with someone else I miss terribly so soon after other grief very difficult to keep giving to the Lord, praying for help - just want whatever days left to count for him, but how can it when you can hardly function so much of the time?
I posted and got several replies to the depression - Fibro. problem a few days ago, but could not find them on this site - would appreciate any re-entries on if anyone ever seems to get well with this diagnosis. Thanks for the support. s a in Mo.

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