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» LymeNet Flash » Questions and Discussion » Medical Questions » Who had to diagnose themselves???

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Author Topic: Who had to diagnose themselves???
disturbedme
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I'm just curious as to how many of us basically had to diagnose ourselves.

I know I did. I had been to about seven doctors. After I had been to see the seventh doctor a few times, I was fed up and started googling my symptoms and lyme came up as almost all my symptoms matched.

I decided I wanted to get a WB taken. Luckily, this duck was at least somewhat knowledgable enough to have the blood sent to Igenex. I didn't even have to ask them to send it there. Of course it didn't come back positive, but the duck still thought I had lyme. I only had 41++ IGG at the time.

He told me he thought I had lyme but that he wanted me to continue taking vitamins and supplements before he treated me. And in some cases, NOW I can agree that it wasn't stupid of him to say this, but I was so sick by this time, that I wanted TREATMENT now. That's when I stopped going to him altogether and found an LLMD.

I'm glad I did because I've learned so much and found that I DO have Bart and most likely do have Lyme and maybe some other co-infections as well.

It's just sad when I think back on it. If I hadn't done some of my own research (if I had listened to the duck who told me not to look stuff up on the Internet), I would probably be... well, I don't even want to think where I'd be. [Mad] [shake]

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
chamade
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Count me in. Fortunately I came to this conclusion pretty fast after the neurologist started the wait and see game. After 2 months I went to a PCP and asked him to test me with the Igenex kit.
The ELISA/IFA came back positive and the WB came back with 39+ and 23-25 IND so he told me I was positive. There were no IGG antibodies at all at that time. After a re-test following doxy I had a bunch of positive IGG antibodies show up as well.

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Why me? Well, why not me???

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LuLuFlorida
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I tried to convince doctors for a year that I had Lyme. Since I lived in Florida they didnt test me when I had the EM rash and early lyme symptoms.

By the time they tested me I had seen many specilist and everybody thought I was crazy. I am now suffering the consequences of chronic Lyme disease and am not responding to treatment.

--------------------
"One day at a time"

Current:
-1.2 IM bicillin three times a week
-1.25 IV Vancomycin every day
-IV glutathione and IM B12
-Byron White since Jan. 2011
-ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano...

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Skyler
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16 years, 24 doctors, 0 answers.

I figured it out myself.

--------------------
I'm probably sleeping...

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randibear
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me too. i kept looking and found about the em rash myself. by the time i finally went to a doctor, i was "chronic".

bunch of idiots.........

--------------------
do not look back when the only course is forward

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bettyg
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me too

[cussing]
34 years; 40-50 mds/specialists = misdiagnosis!


went to a lyme meeting, heard of IGX western blot igm/igg and had them sent there! DUMBFOUNDED when i was told i had chronic lyme.

i thought it was early-onset alzheimer's disease that took my sis=in=law at age 40 !!!!


now, i was furious at first as i did NOT KNOW LYME MIMICKS 300 OTHER ILLNESSES! look how confused we are now, and we know we have lyme and rying to find correct treatments for LYME/CO-INFECTIONS each of us have.

no two of us are alike; similiar; but not 100% !!! [cussing]

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Michelle M
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Cave beat me to it.

I was going to suggest re-titling this post, "Who DIDN'T have to diagnose themselves?" This thread could be much shorter.

For me, four doctors, last one a neurologist who dx'd me with MS. By then I'd read enough on LymeNet (thank you) to know what was wrong. Symptoms were textbook neuroborreliosis. Neuro insisted 'No lyme in this area,' wouldn't give me western blot due to negative ELISA (though later blot was CDC positive), claimed 'EM rash due to tick saliva,' and on and on.

Honestly, these guys get MARRIED to their misdiagnosis and they are not getting a divorce ever.

My angel LLMD signed an IGeneX scrip and faxed it to me before he even met me or took a dime from me.

And there you have it.

I'd love to see a mandatory continuing education class for all doctors to have to attend and pass a test designed to guage their actual working knowledge of lyme disease and coinfections. No take, no practice medicine.

Sorry, I'm over it now.

Michelle

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Beverly
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Yeah count me in too. Luckily I had a EM rash in 2001 which helped, but I had to seek out a doctor willing to give me the continual abx I needed, and it was hard.

And then I had to leave my state and head for New York where I knew there would be an ILADS doctor willing to help me get treatment for Babesia. I had to do this for both myself and my son.

I guess what I went through made it easier for my whole family to get treatment, cuz I was telling all of them you have lyme before any of them saw a doctor about it.

Thank God we have soem really wonderful ILADS doctors out there!!!!

I shudder to think what would have happend if I had not gone to New York for treatment of Babeisa......would any members of my family got the help they needed? [Eek!]

And ditto to everything said above, so many doctors want to stick to their old ideas..and call us lymies crazy. [Eek!]

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Geneal
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All I can say is Thank God for the internet. [Smile]

I (after numerous specialty MD visits) googled my symptoms and actually

Two possibilities kept coming up. Lupus or Lyme.

I had already had a complete ANA panel done which was negative, so that left me with Lyme.

My biggest problem at that point was getting a duck to actually do the WB.

Most of the Specialists refused to test me for Lyme. [cussing]

Hugs,

Geneal

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cjnelson
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ME!!

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

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radfaraf
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Me! I started suspecting it when my only symptom was joint pain and resting my hands did not relieve it. I was 24 at the time so many of the other typical possible causes for joint pain are very unlikely at my age. I'm not happy that at the time I didn't take my own diagnosis seriously as I only had joint pain and nothing else it was easy to brush off lyme when I had no other symptoms and the Drs were helping me (your lyme test is negative, no rash, nah nah [Razz] ! etc).
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echostef
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Me too! I owe my current treatment to myself and one of my friends. If I would've trusted the idiot docs I saw, I would be taking Xanax and getting worse. (Since most of my illness was "all in my head!!!)

Even AFTER I tested positive I stil had to argue with an ER doc that insisted I had pleurisy and "anxiety disorder" and that my tests were mistaken.

UGH!!!

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DesperationIn
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Me too after 12 doctors/specialists.
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Pocono Lyme
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Not me.

The owner of the local feed store did!!

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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amk33
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Me too. I suspected lyme early on, but couldn't convince any doctors. I agree--thank goodness for the internet. Without it I would have never been able to find a LLMD-and I live in NJ--a hotspot for LD!
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riverpatrol
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Me!
6 doctors, and I told each one of them that I had been exposed to ticks while hiking. Each one of them said, "there is no lyme in California". Due to the fact that I was in so much agony and could hardly sleep at night, I spent many hours scouring the Internet, and found my answer, and my LLMD. My LLMD said that I diagnosed myself, and that I was far ahead of most others.

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hanginginthere
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Can't even count the number of doctors and specialists over the past 15 years! The latest and 'greatest' was at a Duke ALS clinic where he was sure I was 'worrisome for early ALS'. My only true ALS symptom was muscle twitching...what about everything else??

My blessed sister was the one who got me started researching lyme and wow, did I have an "a-ha!" moment. It finally all made sense. BUT, my PCP wouldn't even order a routine lyme test for me. He said, "You don't have the symptoms of lyme and testing wouldn't be helpful...I think the folks at Duke will agree with me when you see them again."

Needless to say, I didn't go back to Duke where all they wanted to do was watch me disintigrate. I found great LLMDS on my own! [cussing]

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tailz
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I got so bad, I honestly thought I was dying of cancer - I was all bone, and even my bones were thinning.

I have no faith whatsoever in modern medicine. When they can't diagnosis an egg allergy - or even malnutrition without a 'lab positive', sorry, but I will never put my faith in them again.

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Kerryblue
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[shake] Why is their a duck out their??
WOW, that is great news that they actually have DX. Gee, thanks guys for letting me know.

Of coarse had NO choice. I just connected the dots. Fairly easy..Being facetious

What choice did I have even after I pushed & got 5 poss. Lyme test/Elisa/WB/& Lyme antibodies.
When came to only 3 bans they wrote me off. Said, was not enough, they only ran in part,anywho after 10 yrs.+ getting worse.Also High 8 bans EBV,Cytomegally, Neg. ANA. Dr. who opened my hand up said never saw tissue like mine? Thought was scleroderma, along with MS.

All saying from stress stalking/No doubt that pushed over the edge/Thanks EX...My last yrs. had few good days a week.

I was repeatedly told as many,stress,old spinal inj. or just pain all in my head which is not far from the truth,(I gather), as many of us know, not just what Dr. said.

Well, now that to my lymie friends I know their is such a thing,WOW, know can post here.lol

Yep, collapsing all over place,chronic pain+++, was tad clue, to say least.

[group hug] Kerryblue/ Those who can get to LLMD/ you are lucky between all millions who are still mistreated or ignored..sigh/tooo sad

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LisaS
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I actually got diagnosed by a Dr. My family practitioner diagnosed me after being sick for 15 years. But after she diagnosed me and sent me to a neurologist and ID duck, she said I'd better find a new Dr. And all the Drs she sent me too told me I DIDNT have lyme. ANd then the fun journey began!!!!

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https://www.facebook.com/profile.php?id=1660435643

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just don
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A couple of turning points of my life.

Went to class reuinion where first time he was back, but a classmate from Michigan who is a great plastic surgeon asked me why I was wearing those carpal tunnel braces??

Rattled off my sxs and what I was taking for what(early on here) and what I THOUGHT it was,,,and all he said was ,,,"That doesnt sound right to ME!!"

THAT put the seek in my body. Every doc I went to I rattled off my strange list of sxs,,,they all laughed and said their is NOTHING that fits all YOUR sxs. Your just getting OLD!!! Older than I even thought possible,,,obviously.

Then I had a scarey heart event. heard the heart doc say(after a cath)I wouldnt make it thru the summer,,,told me I would fall in a pile and 'die' when weather got hot. My ejection fraction(measure of heart pumping ability) was at the breaking point of living or dieing!!

I had a completely BLOCKED heart artery serving itself life giving blood. he said part of my heart died

Right about this time I posted on the SF site when anounoumous posters were still allowed,,,my list of sxs. Some strange angel posted that 'sounds like lyme to me'.

I googled lyme and found a sxs list. Was reading down list and bells and whistles were "SCREAMIONG" in my head the whole while. It was a NO doubter!!

TUTU(Bless her wonderful beautiful heart!!) befriended me and lead me to a great LLMD who confirmed the dx.

Actually BOTH of us(LLMD and I) 'knew' based on that point test he sends out when making first appt.

Cant remember the numbers but the 'have to have','proof positive' number I was about 1.5 times that number.

rest is history,,,here I be!!--just don-- SO yes,,,yesI did dx myself(with help and guidance),then had LLMD confirm THAT!!

A local duck SAYS I dont have lyme,,,he tested me for that and it was negative,,,didnt know where he sent test,,,didnt know what timing or prep to use,,,but it was negative and that 1 test tells all!!NOT!!!

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just don

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blazinglyme
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count me in too!

I didnt have the bulls eye rash, but seen the tick!

The doctors I went too did the ld test, even though it came back pos, they still looked at me like i had 6 eyes.

I still had to fight for treatment

I was told I had false positives??? go figure that out!

Best wishes all
[group hug]

--------------------
don't give up the fight

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trueblue
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Me too.

I saw an old Sally Jesse Raphael(sp?) show back in 87 or 88 about Lyme and a friend said, "You know, I think that's what's wrong with you." It sounded possible but then forgot it.


In 1992, I saw an ad for a Lyme hotline in the local paper. They listed 10 sx and I had all 10, and then some, so I called the 800#.

They took a checklist and I had 38 out of 43 sx.

--------------------
more light, more love
more truth and more innovation

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Got Lyme?
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Really had to diagnose myself especially after my primary care duck told me that my bulls eye must be a spider bite since ticks aren't out in October!
And I live (and the duck's practice) is right near Lyme CT!
We have to be aware of whats going on with our own bodies at all times!
Margaret

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Margaret

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heiwalove
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count me in.

my story is pretty awful in that no one, not my family, not the doctors they took me to, even believed i was ill, let alone believed i had lyme (all this with a CDC positive igenex test!). i was way too ill at the time to take myself to an LLMD, so i needed some kind of support, which i wasn't getting. anyway, what ended up happening is that my family had me committed to a psych ward (they thought i was crazy, and not sick), where i stayed, court committed, for five months. i was denied lyme tx during this time (of course the ID duck that saw me in the hospital examined me for all of five minutes, did an elisa test, and said 'there's no way i had lyme') and put on heavy-dose anti-psychotics. i escaped forced electroshock therapy by a hairsbreadth.

i was finally released by the third psychiatrist to whom i was assigned, who, by some grace of god, actually believed i was ill.

i started lyme treatment immediately upon release (my best friend drove me to the LLMD).

now, three years later, my mother finally believes me. the rest of my family, however, doesn't.

sorry. that's way more than i intended to share.
[Smile]

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http://www.myspace.com/violinexplosion

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disturbedme
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quote:
Originally posted by heiwalove:
count me in.

Wow, that's terrible. [Frown] I can't even comprehend how terrible that must have been. I'm sorry you had to go through that. I'm sorry your family was so uncooperative.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
savebabe
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Me too!!
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adamm
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99 44/100% of us probably knew what was wrong with ourselves

before getting an official diagnosis. [shake]

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groovy2
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Me Too

I was sick for 18 yrs - Ducks just blew me off-
You Look fine ect-

4 yrs ago I saw a TV show on Lyme and they
showed a picture of the Lyme Bullseye
just like the one I had on my leg
weeks before I started getting sick-

My LLMD figured out that I have Babs Also--

Do what you have to do to get well again--Jay--

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kelmo
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ME too. Although, I went in thinking mycoplasma was the issue, then learned it was a host of bacteria that I had never heard of before in my life...bartonella? huh?

Thank God for the internet and the one doctor who believed us.

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Tracy9
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Who didn't???

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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D Bergy
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Never got my wife officially diagnosed. Should have treated it anyway as soon as the bite occurred.

I would not make that mistake again. But, I deferred to the experts. Found out there are no experts in my neck of the woods. Only pretenders.

D Bergy

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KS
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count me in. Spent 18 months of endless doctors/tests and had just decided that they would finally figure out what was wrong with me when they did my autopsy.

As a last ditch effort, I asked one of the random doctors I was meeting with to run the WB (of course I had been negative for the ELISA) and sure enough...CDC positive IgM response. If you can believe it, some doctors still don't think I have Lyme.

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shazdancer
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Me, too. Two ER docs a week apart, in one of the most Lyme-endemic areas in CT, missed it, in 2001. I had to tell my favorite walk-in doc what tests to run. It came back CDC positive by Quest Labs.
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Polaris
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[ 21. October 2007, 10:28 PM: Message edited by: Polaris ]

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justwondering
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I have been ill for over 12 years. Over the years I have seen several primary care docs, physician assistants, a neurologist, a rheumatoligist (who gave me the fibromylagia diagnosis!), an ear, nose and throat specialist, a gastroenteroligist, had an MRI, 2 CT scans, an EGD, a colonoscopy and 2 vaginal ultrasounds. I asked for a Western Blot a couple of months ago. 4 Lyme specific-bands, told I was negative. My sister and the internet convinced me to pursue it. Igenex said positive all the way around. Started treatment this past week. Relieved, but still can't believe how this disease is missed. I know there are so many others out there who have it and don't know and it worries me.... Take care:)
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Dancer
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Self-diagnosed after 10+ years.

I was reading "The Rhodiola Revolution" and author said she apparently had had an undiagnosed case of Lyme for 20 years and I thought - how can you have an undiagnosed case of Lyme? That got me on google.

And then somebody told me to read Amy Tan "Opposite of Fate" last chapter, her Lyme odyssey, and I knew right there I'd found the answer. Got an IGeneX kit and found an LLMD.

Thank you Dr's Gerbarg & Brown and Amy Tan!

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Robin123
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I self-diagnosed incorrectly, before the internet. After failed pituitary surgery(no tumor- surgeon said he didn't understand me), I went to the self-help section of the bookstore and self-diagnosed for low thyroid and candida. So then I went to a candida support group for five years.

I really didn't self-diagnose, but I was asking, so does that count?! A fire nextdoor made me chemically sensitive and I went online to ask why. A nurse in Virginia asked what my symptoms were and then told me she thought I had Lyme disease and had I ever been bitten by a tick.

Answer: yes, on my foot in 1981, a clinic removed it(I guess it was an adult female because it was in my foot a week and not leaving) and I had no symptoms at the time.

I didn't even know what Lyme was nor that there was any such thing as this spirochetal illness. Absolutely no discussion ever in my life of the existence of this. Still feels like the twilight zone...

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JimMet
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I didn't get my bull's eye rash until about 7 weeks after my bite, and then it looked more like a ringworm. It was gone in just a few hours. I went to my GP, who is a close friend of mine, and he laughed at me when I told him I had Lyme. He wanted to RX tetracycline. I told him that I preferred doxycycline b/c it causes less stomach upset. I had no idea, nor did he, that it was the initial drug of choice for Lyme. After weeks of emailing him info about Lyme, he finally agreed that I had it.

I eventually doubled my doxy dosage and started writing my own RX's.

Now he has Igenex testing kits in his office and has been diagnosing it. He still calle it "Lymes," however.

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mookiewill
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I was lucky that I noticed the strange "bruise" on my wrist one day, otherwise I might be on some experimental ALS medication. The longer I talked with the ducks the more I realized they didn't know much and nothing real about Lyme. When I realized that I was on the ALS railroad, I *****ed about it
to the young woman who was taking blood for my 5th blood test. Told her they where ignoring Lyme.
She told me of a Lyme Specialist in Seattle, and secrectly wrote the info on a napkin.

The ALS doctor must make $150,000 a year, the young woman might make $8 an hour part time.

I'm sure a duck can fix a broken arm, but not much else. [bonk]

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Robin123
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I see Mookie brought this thread back. Even after I got diagnosed Igenex-positive, a rheumatologist sent out for an ELISA which came back negative - "good news, you're negative", said the rheum duck, then the ID duck said he didn't think I had Lyme, then my internist said in a very serious tone of voice that the ID duck didn't think I had Lyme. Of course, all got fired.

Point being that even after not having been diagnosed by doctors over 25 years, I was still not being allowed to be diagnosed.

And another doctor said to me recently, so how do you know you're positve. I rattled off my antibody band numbers and what they meant, then looked at her for her next question. No next question. She got the point: I knew.

Well, this situation needs to change. I suppose there are many ways to do change work. I started by contacting all medical places I had been at in the last 25 years.

Now, I speak up to any doctor I go to, plus discuss the situation with the staff, as in yes, it's here and yes you could get it too kind of discussion. My opinion is, no more silence. No more taking it. Dish it back, with educating efforts.

Another educating option: we can go to www.ratemeds.com and literally rate any specific MD. For both positive and negative reports. This is another way of letting the public know about something important, like medical attitudes about Lyme disease and coinfections.

PS JimMet, looks like you somewhat educated a physician. Congrats.

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Cass A
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Count me in!

When I got a ring-rash, because I had a friend who told me that people she knew were locked up in psychiatric wards when they had Lyme, I went to my PCP to get tested for Lyme. Unfortunately, he sent me to Quest Diagnostics, and the test came back negative.

After I got severe tinnitus overnight some years later (had other symptoms along the way that never really resolved), another friend sent out an email listing tinnitus as a Lyme symptom!

I got tested at the now-closed Bowen Research lab in Florida, and came back with the highest level Borrellia!!!!

Then, I went to an IDS, who isn't a total dolt, and he sent me to IGenex, where my test was also positive.

So, ten years later, I'm now seeing an LLMD and doing pretty well.

Best,

Cass A

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von
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Me too! Myself and my husband. Ugh
Von

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pamoisondelune
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THANKS to ILADS website, i had read about lyme.

I had 9 months of seemingly unrelated little problems. Then first week of June, i had increasing fatigue; had to take a nap every afternoon. On June 6, went to bed with a light flu, light muscle aches, no respiratory involvement. By June 8, i knew it was lyme. Saw a new,young foreign doc, told him i had lyme and wanted 400 mg Doxy/day. Two more appointments, and on June 18 i started the ILADS dose of Doxy.

I was able to convince him because of his insecurity, and because i made precise demands, and showed him a bunch of printouts from ILADS website.

Sometimes i want an insecure doc that i can push around!

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tailz
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I can't even remember how many doctors I saw. Lymetoo found me on the Celiac forum, starving to death. (thanks again)

Now though I'm diagnosing myself with some sort of hormone-producing tumor (most likely adrenal), and I haven't been wrong yet - so why should I doubt myself?

I DO have infection. I DO parasites. I DO have candida. I DO have diabetes (but I'm faking it out). I DO have a failing liver, clogged arteries, etc...

I went grocery shopping yesterday, and oh my God, the cell phones were out - while I was darting away from one, I ran right into another three. I gave up trying to avoid them and had the luxury of overhearing one conversation...

..."I couldn't sleep last night for some reason. I can't understand why."

???!!!

Then I drove by some monster towers on 22/78 with my daughter. I have been avoiding going to the mall because I always felt sick on that road. There was one area where two cell phone towers were almost side by side, and both of them were loaded.

We're supposed to have a wintry mix tomorrow, so now I have to cancel my appointment. It doesn't matter - I CANNOT drive that distance anymore. I just can't do it.

I know I have cancer, too. I know I do. I think I'm overproducing hormones.

'Cell Towers: Wireless Convenience? or Environmental Hazard?' Edited by B. Blake Levitt - pages 39-40

In the early 1980's, the U.S. Air Force commissioned a $5 million study into the biological effects of long term, low-level exposures in test animals at the University of Washington's Bioelectromagnetics research lab, the oldest in the country. Nearly the entire first group of test animals died of an unidentified infection.

Dr. Robert O. Becker, author of 'The Body Electric' and 'Cross Currents'...observed at the time that this was likely due to immune system suppression which made the test animals more susceptible - an observation that he and colleagues had made in research of their own. The tests had to begin again.

Several generations of rats were exposed to pulsed microwaves in ranges that simulated the levels allowed by current standards for humans. Results found increases in adrenal medulla tumors, malignant endocrine and ectocrine tumors, and increases in carcinomas and sarcomas.

The authors of the study tried to downplay their own findings and the study became controversial. (Effects of Long Term Low-Level Exposure on Rats, by A.W. Guy et al., University of Washington, Vol. 9, USAFSAM_TR-85, Aug. 1985.)

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Nicoles Mom
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My daughter too. 8 years, untold docs and specialists and clinic - including Mayo.

Dara

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bejoy
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Yes and no. My naturopath suggested doing a lyme test, and my response was that he should test me for something I might actually have!

But I had most of the symptoms on the ILADS list, so I did it anyway. I thank God for his knowledge and insistance.

Well the Bowen test came back with a high positive, but Labcorp says I have nothing.

According to the duck experts, the Bowen test is just reporting random borrelia, not lyme borrelia bergdorferi, and isn't worth the paper it's printed on.

So I read everything I could find, and responded to lyme treatment. Now I have my life back.

If you ask a duck, I don't have and never did have lyme.

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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notkrazybrian
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uhuh, DX= Dr. Brian K White
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GenaD
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I had my hormones tested and they were all out of whack. I went on meds for them which only helped for about a month.

Then I thought maybe I had food allergies, but couldn't find any.

Finally I settled for the Fibromyalgia diagnosis, but it kept getting worse.

Finally, the thought of Lyme came into my head. (I was living in Florida, but I grew up on the east end of Long Island so why didn't I think of this before? Lyme brain!) I started researching Lyme and I knew I had it. I was tested by Bowen Research lab, but they couldn't say for sure if I had Lyme.

I found Dr. S in South Florida via internet and he confirmed it was Lyme, Babesia, and Bartonella.

--------------------
"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

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cottonbrain
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me too. 16 years with a misdiagnosis of CFS. Finally figured it out myself.

there are NO LLMDs in my state, NC.

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echostef
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Me, me, me!!!
According to the 10+++ docs I saw, I was just "anxious, depressed, and maybe suffering from trigeminal neuralgia."
Luckily I work in the healthcare field and had a nurse friend who had actually come across some patients with Lyme over the years. She urged me to get a Lyme titer and I basically had to demand it from the [email protected]@ neurologist my PCP sent me to. IMAGINE HIS SURPRISE when it came back positive!
Thank G*D I found two great LLMDs. The rest of them can roll up their diagnoses, bend over, and insert them like suppositories... [cussing]

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mtree
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one of the moms from my daughters pre-school...diagnost me.....didn't even know her very well......

her daughter was going through it.....knew i was sick......for awhile....

said..to me...you have Lyme..

not I THINK you have Lyme....but you HAVE Lyme.....

...had NO idea what that was.....just moved to the Jersey Shore......this was back in 1990.....

but she was right.......and gave me a name of a doctor....

thank god for someone butting in....

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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HaplyCarlessdave
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I went to a doc at Cornell's campus medical center, andwas apparently properly diagnosed and put on 6 weeks of doxy, but they took a faulty blood test and subsequently told me it was "negative, so I didn't have to worry". This, even though I had a bullseye rash. And I don't think they even tested for ehrlichia or babesia!

A couple months later I relapsed and it hit like a ton of bricks. They gave me more doxy, but it was too late, lyme had gotten entrenched, and babesia was still there. That was the beginning of the long nightmare. If I had gotten the proper diagnoses and treatment right away, I almost surely could have avoided years of misery and held onto many thousands of dollars (and made several thousand more!)!
DaveS

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ICEiam
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I diagnosed my daughter, nearly had to beat up a DUCK to write the order for the blood draw and to have it sent to IgeneX. I provided the information.

Then I started more research.........before the IgeneX test came back for my daughter I figured out what had been wrong with my little granddaughter all her life. She was nearly 3 by this time.

Found this site, and got a real education and found LLMD. Thank GOD for our angel LLMD's.

--------------------
ICEY

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dg0207
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Hey All:

I spent all late Winter and early Spring believing that my positive Elisa and indeterminate Western Blot were from a prior exposure and not an active case.

All the time up to mid April as my aches wore on, my doctors insisted tha my body was adjusting to thyroid medicine (Synthroid). It go to the point were I developed widespread muscle aches and burning sensations along w/ bad insomnia that I went to the ER. They told me I am classic Lyme at a later stage. They ran Elisa and Western Blots which came back again Positive and indeterminate (As per NYS Health Dept).

I went back to my MD with this diagnosis and she said, "Not Lyme, you probably have more auto-immune issues since your thyroid is auto immune (Hashimoto's). She refused to test again with all co-infections.

At that point I left her office not looking back. I immediatley booked appointment w/ local LLMD in Westchester County, NY. Doctor told me that it is Lyme and possibly co-infections. He said that the doctors should have treated me based on positive Elisa and 4 protein bands on western blot. Since last week started ABX Amoxicillin and are awaiting lab results.

I probably will seek out a new general MD as mine seemed to have bailed on me. We all support our medical industry dearly and they should respect trust our judgements. As you all know we are the only ones that have the best instincts on how we are feeling.

Everyone at work looks at me an says "Hey Dave you really look great." But they don't have any idea how bad I(we) feel on the inside. My doctor seems to fall in this line.

Good luck all,

Dave

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dg0207
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Another point.

Fibro Clinic in Norwalk Connecticutt also said in early May that it looks like Lyme and that should have started treatment sooner

DG

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tickssuck
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If it wasn't for the internet, I'm sure I'd still be undiagnosed.


Lyme just kept popping up when I would research symptoms, but not common in WA State I would rationalize. No memory of a tick, no rash, nada.


After 3 years of seeing docs that thought I "looked pretty good"...I was at my wit's end. The hyperintensities in my brain weren't "terribly abnormal" they told me. My very sudden onset of elevated BP was just "hypertension setting in" (overnight???). I still in my gut, though had no idea when/how I encountered a tick, thought it could be Lyme due to symptoms.


It was when I came across an article online talking about many Lyme patients having a propensity to get static shocked that I became even more convinced - I had that symptom too - along with oh so many others.


Tested IGeneX + for Lyme, Bart, Babs and Ehrlichia...now beginning my fight for wellness.

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lymebytes
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Yep, I diagnosed myself..story link below.

--------------------
www.truthaboutlymedisease.com

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daise
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Yes, I diagnosed myself. Isn't that the way it nearly always works?

daise [Smile]

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Angelica
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I saw more ducks then I can count and I was given unreliable tests for LD and no co-infections. The ducks were not capable of reading my test results. I had to ask for the tests in the first place.

I had a friend who had LD who was luckily diagnosed right away by her family MD. She convinced me to get Igenex testing and see a LLMD. It took me years after that to get an Igenex test because I believed my family doctors knew what they were doing and honestly for most of my life I could not afford proper testing or the money to see a LLMD and I thought that it was a luxury I could not afford because I had already been tested and told I did not have LD.

I often wonder how many people out there suspect they have LD but cannot afford the testing or the doctors to treat it?

I wish I had been diagnosed when I had better insurance but sadly that is when I was given inferior tests. Now I pay for almost everything out of pocket.

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Lauralyme
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Yep me too.
If I hadn't of done my own detective work, I still wouldn't have any answers to my multiple symptoms

--------------------
Fall down seven times, get up eight
~Japanese proverb

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njlymemom
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Yes, and my 3 children too.

Most of us chronic patients are chronic b/c

we were not treated or mistreated (misdiagnosed).

Lucky for some of us that we were able to find

the answer for ourselves, especially with how

sick our brains are.

In my opinion, chronic lyme patients are a very

strong people to have survived the way we have

with no or little help.

It wasn't until i started feeling better that i

realized how very sick i was.

is anyone else existing in "survival mode"?

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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tickssuck
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Yes, njlymemom...I am certainly just existing in "survival mode" right now. Only 3 months into tx and feeling as bad as ever. I am trying to just take it one day at a time.


I have to stop in and read success stories frequently or I become too overwhelmed and discouraged. I need something to hope for right now. This is one tough road. But like someone said above, at least I finally know what I'm battling...finding out was as much of a battle as fighting the disease is right now...crazy.

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Mackster
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I was recently diagnosed by an LLMD BUT I had a suspicion it was Lyme all along. Got sick back in October of 2007 and when I started reading all the horror stories of people going to multiple doctors and never getting answers I pushed to have tests done and asked questions.

The LLMD I see was reccommended by someone I work with and he is fantastic. Said we caught it early enough that I hopefully can kick this out. Certainly feel ALOT better since starting my abx a few months ago [Smile]

I have to give credit thought to my first physician for even bringing the idea of Lyme to my attention--I would have never thought of it if she didnt mention it. Funny thing is after she tested me and it came back negative she gave up on that...Even my current physician didnt think it was Lyme. I had to mail her a copy of all my tests to prove to her that I do have it.

I knew I wasnt crazy [Razz]

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proudmom
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Still in the process of self diagnosis. It's great when you get it all put together and try to give that to your doctor. [shake] Not!!

I typed out the following to give my doctor

My Goofy
Undiagnosed
Issues

Starting 1995 through 2007


1. Severe muscle cramps, (1995) legs, feet, hands, neck, back
Diagnosis........after blood tests came back normal, was given quinine to try and told to drink more water. (I was not dehydrated though)


2. Extreme fatigue
Diagnosis.........more blood work, all normal. Must be my work, told to take it easy.


3. Severe joint pains, knees, elbows, upper back and neck
Referred me to a Rheumatologist.
Diagnosis.............Same as muscle spasms. Due to overwork. Called it wear and tear arthritis. Given more muscle relaxants and celebrex.


4. Constant pain in chest
Diagnosis...............unknown, had MRI, X-ray, mammogram, and ultrasound. They couldn't find anything. Probably a touch of arthritis in the chest wall.


5. Night sweats/hot flashes?
This started when I was about 30. At that time I was too young for that problem, must be stress. Now 50yrs old and guess what? Now I'm old enough for pre-menopause!!! Tested hormones again. Got phone call that everything was normal. (Normal for whom?).


6. Chronic sinus infections
Diagnosis.......deviated septum and growth in nose.
Surgery to correct issues. After surgery I still have `sinusitis' Dr. thinks chronic treated for 2mos. and still no relief.


7. Migraines/headaches

Diagnosis.......after normal test results for thyroid, hormones, CT scan, must be stress.
Given maxalt for migraines


8. Left leg swelling
Diagnosis.........unknown. Saw rheumatologist and he did blood work all was normal he
Noted swelling but made no comment.
PCP ordered ultrasound scan of legs. All was normal. Still swells and hurts.


9. Shortness of breath
Diagnosis...........Allergen induced asthma. Given inhaler but only got mild relief.
Told to change my carrier due to exposure to mold animal dander etc.


10. Rapid heart rate
Another trip to the ER. This happened at work just before lunch. Heart rate was so fast it was almost impossible to catch my breath. Boss took me to ER. It subsided after about 10min and was over by the time I arrived at the hosp. They took my BP and it was extremely high. After being examined the Dr. rx'd some anti anxiety meds and send me home. No testing done.


11. Irregular heart beat (flutters)
Diagnosis, per cardiologist..........unk. Echo cardiogram showed mild issue with valve but couldn't explain irregular heart beat. All blood work and other tests were normal.


12. Hair loss
Diagnosis...........blood work to test thyroid again, all in ``normal'' range. It must be that I have to shower at least 2 times a day due to work. Use more conditioner.


13. Tingling and numbness of hands
Diagnosis...........possible pinched nerves in my back due to the muscle spasams.
Given muscle relaxants and vioxx. I got mild relief but symptoms persisted.


14. Off balance or dizzy feeling
Diagnosis...........inner ear trouble of unknown origion. Or a `silent migraine' due to being nauseous as well. Given script of Meds similar to Dramamine.


15. Extreme sensitivity to heat and cold
Diagnosis..........None. All blood work normal


16. Numbness of one leg (one time)
Went to the ER for this one. Dr poked me with needle to verify numbness. Told me that because I didn't look stressed it must just be a pinched nerve and gave me streatches to do and a re-check appointment for the following week. Resolved itself in about 3 days.


17. Light sensitivity
Eye Dr said that age is probably a factor.


18. Stomach pains, mainly after eating, sometimes severe.
Diagnosis......... blood work, normal. Had gallbladder and liver scan, saw minor marbling on liver and gallbladder looked normal. Told to not take so much anti-inflammatory drugs any more. (Was taking Celebrex and ibuprophen for muscle aches and joint pains.


19. Bouts of diarrhea
Diagnosis..........stress?


20. Unexplained rash, 2006 (one time). Kind of like hives but blotchy and all over, didn't itch mostly a slight burning. This lasted about 1 week. I treated myself with benedryll and didn't report it to Dr.


21. Anxiety? attacks (2007) mostly wakes me up during the night.
Had a really bad day, seemed like all my symptoms wanted to rear their ugly heads that day. Went to Dr. and he admitted me to hosp. noting that I didn't look so good. They ran thyroid tests and CBC.

Results were all normal. He came in and apologized to me but he thought I needed to see someone from the local area mental health center so he already called to have someone come and visit with me before I was to be released. Prescribed Xanax and Zoloft.

These helped very little but eased the tension just enough so that my symptoms were more bearable. Still taking Zoloft, I'm afraid to quit taking it because at least I haven't had that severe of an episode since then.


22. Traveling tingling and numbness starts at feet and works up to head.
Part of the above mentioned so called anxiety attacks?


23. Losing train of thought easily and mixing up words ( off and on for all these years)
Diagnosis.........again, not reported. Just how would I explain that one? I usually laugh it off as a brain fart.


24. Thyroid nodules
Convinced Dr to do a thyroid scan by pointing out the swollen area on my throat. Nodules found and was refered to Endocronologist.


25. Floaters in eyes (dark blotchy stuff)
I went to see eye dr. Diagnosis..........normal for my age (48) if it gets bothersome or worse make another appt. (hmmmmn.....wasn't I there because it was bothersome?)


26. Itchy skin, travels around and feels like bugs biting, especially when showering.
Diagnosis...........none. By this point I don't want another psych. Evaluation so I haven't told the Dr.

I tried to list the symptoms in order that they cropped up. The part of all this that bothers me the most is that none of them have really gone away. At least 2-3 of the above issues every day. It's been at least 2 years that I haven't had a day go by without something hurting.


Doctors I've seen:
2 PCPs 2 Cardiologists 1 Internal Medicine 1 Rheumatologist

1 Endocrinologist 2 Psycho therapists 1 Ear Nose and Throat Specialist

1 Surgeon for Gallbladder consultation

Sir/Ma'mn, please fill in info. below so you too can be added to my list of no answers. [confused]


Doctor:_______ Specialty:_________ Diagnosis:________

LOL....I am going to see my daughters LLMD so I guess I wont need this form. [Big Grin]

--------------------
"Absence of evidence is not evidence of absence"--Carl Sagan

Posts: 317 | From Kansas and New Jersey | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
tickbites
Member
Member # 15647

Icon 1 posted      Profile for tickbites     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi! I had to diagnose and treat myself also. The drs. kept saying MS and they
didn't know what was wrong with me. It was very frustrating. Finally, I have
a LLMD that knows what they are doing!

Posts: 11 | From tickland | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
   

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