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knzie Posts: 6
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I have been suffering a variety of symptoms for the past 2 years - dizziness, muscle weakness, muscle pain, difficulty concentrating, general "fugginess," odd reaction to alcohol, joint pain, diarrhea, just to name a few. I had a MRI which revealed 20+ small lesions in the brain and 6 small lesions in the spine. I had a spinal tap that revealed oligoclonal banding. Though I don't recall a bite, I worked for a number of years in a tick-infested area and a number of former co-workers have been diagnosed with lyme. I insisted on an igenex test, which revealed the following: IGM - Igenex Positive; CDC Negative **31 kDa IND **34 kDa + **39 kDa IND **41 kDa +++ **83-93 kDa IND IGG - Negative **31 kDa IND **34 kDa IND **39 kDa IND **41 kDa +++ 58 kDa + **83-93 kDa IND My doctor admits she does not know how to read these results. My neuro has dismissed lyme (even before the igenex results were received) and is convinced I have MS. I don't know whether these results are significant enough to suggest lyme. Any thoughts or recommendations on how to proceed would be MUCH appreciated. |
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kristielyme25 Posts: 473
Member
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This is lyme...anything Igenex positive is just that: POSITIVE! You should seek out a LLMD, or see if your doc is willing to treat the lyme like it needs to be. Good luck and I hope you can start treatment and start feeling better soon! I am not a medical doctor YET...my opinions are not approved by the FDA! ;)
“If you will call your troubles experiences, and remember that every experience develops some latent force within you, you will grow vigorous and happy, however adverse your circumstances may seem to be.”
-John Heywood
"Between you and every goal that you wish to achieve, there is a series of obstacles, and the bigger the goal, the bigger the obstacles. Your decision to be, have and do something out of the ordinary entails facing difficulties and challenges that are out of the ordinary as well. Sometimes your greatest asset is simply your ability to stay with it longer than anyone else."
~ Brian Tracy
~k~ |
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toothfairy55 Posts: 3856
Senior Member
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Hi and welcome. An LLMD would take an IND as positive. You just arent cdc positive. Please PM (private message) Jaime for a list of LLMD. Tell her your state and location and how far you can travel. I was diagnosed with MS also. I opted not to take meds and Im happy I didnt. 9 years later I found out it was Lyme.I had all the same symptoms as you. I urge you to get an LLMD and have them evaluate you before allowing any one to put you on MS meds. PM me if you need anything Carol Carol
I am NOT a doctor, anything I share is based on my experience & research. I encourage you to discuss any and all information that I share with a health care provider. |
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Bettyg Posts: 26669
VIP Member
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welcome  brain lesions are present for LYME too; ms/lyme lesions are hard to differentiate. you have lyme disease. you just didn't have ENOUGH POSITIVE NUMBERS to meet cdc's strict criteria to be positive. if you're cdc positive, YOU ARE COUNTED IN LYME STATISTICS nationwide. the way it is now; you are positive, but NOT COUNTED; crappy right? read this post which explains the western blot nos. in detail and other good info. http://www.mdjunction.com/forums/lyme-disease-support-
forums/tips/1092391-missouri-drcs-western-blot-explanations-
of-nos what are the largest cities and state you live in that are closest to you? please send me or jaime a private message, and we'll send you llmd names ok. BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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jaime1978 Posts: 2399
VIP Member
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Oh my gosh, YES that is positive. Please send me a pm and let me know your state and neighboring states you can travel to and I can get a list of lyme docs for you. Mainstream docs are rather clueless about lyme disease, not knowing how to read the tests, unreliable tests, not sure how to treat it, basically keeping us in limbo for years. It isn't uncommon for lymies to have lesions, so I wouldn't pursue MS as of yet, because the treatment for MS and lyme differ hugely and with MS they often treat with steroids which is a HUGE no no for lymies. It basically shuts down your immune system giving free reign to the bacteria. In fact, headaches alone can cause lesions. Check out our lyme fact section, we've got tons of great info in there. Print out the lyme symptoms list I have there, mark the ones you have or have ever had. pm me, and we'll get you started jaime Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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knzie Posts: 6
New Member
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thanks to all for your replies! very heartening. Unfortunately, I'm in Canada - which, if you can believe it, seems to be even less lyme-literate than the US. I am in contact with one physician, but he is retired so I don't know whether my family physician will follow his recommendations. Fingers crossed... |
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cmany Posts: 6205
Group Leader
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well if you cant get your regular doc to do it - you can try a more natural approach...which we can help you with that here too... Bottom line - there is research out there that ties Lyme and MS - they have known since the 30's that there is a spirochete involved in MS - just that it is very evasive like Lyme...there was a doc in the 50's who was able to culture it... Dont settle for Garbage - You have LYME - no ifs ands or buts...get your doc the info from here on how to read igenex tests... let your doc know that you have a very positive test - and you will not sit and allow your health to diminish because of lack of recognition of a very real illness...you should not be made to suffer because some choose to believe that it is not real - while other continue to prove that it is worse then the mainstream is willing to admit... Arm yourself with knowledge - Christine [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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flowbeam Posts: 43
Member
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I too was misdiagnosed with MS for over 4 years. I did not have any lesions although I did have oligloclonal bands which is indicative of MS or "some other neurological disease"- years later I find out through MY own research and advocacy and yes, I admit, tons of hours on the internet, that I have Lyme. The MS diagnosis can be very scary...I was actually very happy when I showed reaction on my Igenex (not positive yet). I have been on abx since Aug 2009 and my doc and I are certain now that it is Lyme. Be grateful that you caught the Lyme so quickly after your MS diagnosis. It is tough to suffer from misdiagnosis...and then on top of that for me to have had a child who may or may not have Lyme (haven't tested her yet). Keep researching and learning about Lyme...VERY important. Often times I feel like I have more info that my own LLMD. This forum is a great place for real info and real experiences. I wish you the best. |
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jaime1978 Posts: 2399
VIP Member
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how far up in Canada are you? would you be able to travel to NY? Or somewhere in New England? Any of the states? If so you can send me a pm and I can help find you a lyme literate doc. If not, you can make a post here for other canadians asking them to PM you with thier doc info or how they are getting treatment. We can't post doc names on the board, but you can do that thru pm's and emails Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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lindaca Posts: 1009
Member
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Just had updated mri's, and I have the oligoclonal bands as well. MRI's show a lot of expansion of the increased signal area in the spinal cord, but even the radiologist notes indicate possible vasculitis or infectious myelitis (lyme!) as well as the possibility of MS. On the brain, he noted increased signal in one area, BUT also indicated that this type was NOT typical for MS. So, we're back to non-MS and yes-it's-lyme. My doc says that you can have increased signal on MRI's from abx 'pissing off' the little buggers. |
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