posted
Hello all, I am new to the forum. Lyme was mentioned to me in a 'diagnosing MS' forum. A wonderful person read my list of ailments and situation, and brought up Lyme. I will try to make this as short as possible
4 years ago I became ill while pregnant and delivered prematurely, I had gall bladder disease, pancreatitis, and had become a type 1 diabetic (all at this time)
I am a strange case of adult onset type 1 diabetes at age 36 I continued to go downhill from there -Severe fatigue and weakness -Severe muscle weakness, cramps, 'charlie horses', & spasms -Drenching night sweats for approx. 1 month after having the baby -Leg pain, 'buzzing', burning, stabbing (I do have neuropathy in both legs from the diabetes) -Severe joint pain -Swollen and painful lymph nodes on L side of body -Headaches for days at a time -Unsteady gaint now, walk into things -I am 'stiff' when I sit for any length of time -Bottoms of my feet are torture to walk on, very tender, it is painful to walk -My head feels full of 'foam', I cannot think straight. Just doing this takes all the effort I can muster, to think of what I need to say and type -Brain scans show 'white matter' something, I don't have technical terms handy
REcently, one doctor (not my neurologist) stated that in his opinion I have MS. I am to see my Neuro again the end of this month. I have been seeing him for approx. 3 years. He seems to be very open minded. He checked for Lyme and many others, I believe through my local hospital. The Lyme there showed negative. I did show very high Epstein Barr levels, which he has put me on anti-virals for. It is helping the fatigue to some degree. I'm not sure if this doctor would be open to testing for Lyme somewhere else.
It will be 5 years in October I have been like this. Would anyone give me their opinion on my situation? I am located in N. Ohio. Thank you! Jazzy
[ 16. August 2007, 10:28 AM: Message edited by: Jazzyfizzle ]
Posts: 8 | From Ohio | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome, Jazzy, but at the same time, I'm sorry you're here.
Did you get a copy of your negative Lyme test? I was told I didn't have it, but my test was CDC IgG positive! I learned that you always want to see the results yourself.
If you were just tested by a local lab, chances are that it was not as sensitive as IGeneX. You want a test done by them ... I had the test kit sent to my house, took it to my doctor, and insisted that she run the test.
You also might want to get an appt. with an LLMD. If I were looking at an MS diagnosis, I'd want a Lyme specialist to rule out Lyme.
Unfortunately, Ohio isn't known for it's LLMD's. I fly to NY to see mine.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
How does your neuro explain the joint symptoms with the MS diagnosis??
Sounds like typical Lyme symptoms.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Sounds too familiar to me too.
Don't trust tests so much, I would start treatment and see if you improve.
Sorry to hear about your story.
Same here for me, going from doctors to doctors, no diagnosis, until I diagnosed myself with lyme. Now I found a doctor who diagnosed me with lyme too.
Good luck, Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Welcome
I would try to find a llmd (lyme literate dr) or at least a lyme friendly dr (A dr who is willing to consider lyme and coinfections ... will test through igenex ... and treat even though they might not have much expereince with lyme&coinfections) but a llmd would be best.
This way it could be ruled in or out in a more reliable manner.
posted
welcome, i just sent you a private message, pm, on my 61 pages newbie links, advise, DETAILED INFO ON WESTERN BLOT IGM AND IGG TESTS ON PAGES 7-9, symptoms, tests, disability, much more, and TREEPATROL'S archive link of over 1000+ sites of good lyme info!
to find your pms, go to top left hand side above posts and look under the HELLO jazzy.... by blinking light!
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Find that Lyme doctor in your area...they will order the IgeneX test along with co-infections and complete bloodwork.
Have you posted in the Seeking a Doctor section? You will get responses!
If you're not ready to see a llmd, follow kitkat32's advice about ordering the IgeneX test (no charge) and taking it to a friendly doc! Then post your results here...
Hang in there, everyone's here to help! tory
Posts: 158 | From PA | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)!*)! *!))!!!!!!!!!!!!!!!
Yup, could be Lyme or other TBDs!!! Get thee to an LLMD*)!*)!*)!
And if it IS Lyme or TBDs, you CAN get better*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hello everyone, thank you for the welcome! I need help so badly. I am a shell of the person I once was. I would love to look into seeing a Lyme doctor, anything to get some of my life back. Not sure if I listed that I have been found highly positive for EBv. My neuro is treating this with antivirals and the fatigue is definitly better but everything is still here.
I do remember having a tick on me once, but it was many years ago.. I would guess around 1987. It was well stuck on when I found it. I dont' remember if there was any type of rash. I know I could have easily missed another one.
Thank you for all the information I sure appreciate it! Jazzy
Posts: 8 | From Ohio | Registered: Aug 2007
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I would love to look into seeing a Lyme doctor, anything to get some of my life back. 
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