posted
I'm all over the place. think MS one minute and than convinced I have Lyme. One thing I know is I'm really sick and losing it. going to lyme support group tomorrow. Just spoke with someone personally who tested Positive thru Igenex, went to a well know LLMD for yrs...didn't get better, than dx with MS and is now in wheelchair and could barely talk. He's upset he wasted too many yrs chasing Lyme DX, but admits he could have had both. Said he also had many of my sx, so now I'm back to I might have Ms and not Lyme. Sorry guys I'm a bit nutso right now. anyone have MS that might know of sx? I just posted on a nuero board. MY sx: 6/05 severe left Headache , neck pain. Major fatigue,generalized muscle twithces, legs muscle weak (no loss of strengh or size), tender lymph glands, some night sweats, cognitive probs.tingling side of face, sometimes feet, bit of blurry vision, creaky bones (longterm), flu like, fainting like spells. Out of work July-NOV'05. dx: FM. Nov-June '06 still some fatigue, muscle twitches otherwise O.k. still "couch days". End of June: fatigue, increased all over muscle twitches,night sweats x3, sweat while eatingx4, legs rubbery some swollen glands. Never had high temp. 99.2-99.9 but feel hot. DX: toxo. Back to work PT sept. excercising, feel pretty good very little twitches. Then 10/15/06: Chills, temp 99.4, tender nodes, muscle twithces very bad,flatulence, leg muscles weak, rigid x 2 weeks, balance problems but not dizziness which I still have, along with the twitches all over.Feel like CNS on edge. still out of work. Sounds like lyme but who knows.
Posts: 145 | From NorthEast US | Registered: Aug 2005
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Greatcod
Unregistered
posted
You might want to check and see if MS onsets as quickly as your problems have. I don't know,I have no professional knowledge, but the few MS people I have known have not such had sudden and dramatic onsets.
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posted
Kumba, I will try to help. First off, take a deep breath. I know that is hard to do, but I think it will help you to assess your situation more clearly.
I'll tell you right off the bat that I am biased to the opinion that all (OK, most) MS cases are caused by infection or combination of infections.
Having said that, there is no cure for MS and there are not even very effective treatments. Furthermore, the symptoms, diagnostic results, geography, etc. of lyme and MS are exactly the same.
If you go looking for an MS diagnosis, eventually you'll get one, especially if you have lesions.
I don't see anything to lose by starting on abx and recording the results---do you herx? do you feel better? etc.
There should be no rush to get a dx of MS---boy, I wish I had someone tell me this when my husband was dx'd with MS 2 1/2 years ago. He is now being treated for lyme and is getting better (slowly). As is my sister. There are many others--on this site and others.
My advise is to get a good llmd, get some good testing( and a CLINICAL diagnosis) and get some good treatment. The best way to know you have lyme and not MS is to get on abx, herx and get better.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
thank you for your support. Yes one of the problems form what I'm reading is the treatment for MS does suppress the immune system leaving the body unable to fight off pathogens...including LYME. And maybe it is Lyme among other infections that can cause MS. O.k deep breath. No wonder I'm having balance problems, LOL! I've had MRI, evoked potentials but don't know results although I see white spots which can be attributed to many things! O.k. breath. Am holding off for now on spinal tap...See the neuro next week.
Posts: 145 | From NorthEast US | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Kumba.
We're gonna get to be good friends!
Either that or you're gonna get sick of hearin' from me!
Your symptom list is screaming 'lyme disease' and 'babesia' to me.
Now, your neurologist is trained to look for MS. Chances are, he doesn't know nuthin about lyme. I already know that because he gave you a worthless lyme test. Right?
I was dx'd possible MS 2 yrs ago by my neurologist. I did the gamut of all the tests, 'zackly like you're fixin to do. I did the brain MRI -- 11 frontal lobe lesions, to 5 mm in size, radiologist felt due to lyme, neuro said no way as there's no lyme here in our area. Hah.
Spinal tap (no fun) negative for oligoclonal bands but showed elevated proteins (typical for a person with a brain infection - i.e., lyme disease in their brain).
Evoked potentials - I had positive SSEP's - this is the one where they test your arms. I had no cortical responses at all. However, this is absolutely typical in neuroborreliosis, so if you have such a finding do not let the neuro convince you that it means you have MS as it does not necessarily mean that.
Many of the symptoms you relate are quite atypical for MS and in fact common to lyme. Severe localized headaches, for example. Neck pain. Facial tingling. Sweats.
No one should let a neurologist talk them into any MS labels without a thorough lyme workup first -- especially with a symptom list like YOURS! And if it were me, I'd skip the invasive spinal tap for now -- revisit it later if you don't feel you've been conclusively diagnosed after an LLMD visit and IGeneX testing.
I know this stuff can be really scary. But a bad CNS lyme infection is nothing to mess with. I know you'll get better once you get proper care and escape the ducks, Kumba! Keep the faith and keep reading and learning.
PM me any time a'tall!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Kumba-
Please listen to these folks, they are right. Treat for lyme and other TBI First, don't forget to test for Rocky Mountain Spotted fever, very prevalent in the East, then if you don't see improvement you can consider MS, but please don't take steriods.
Infections, whether bacterial, viral or fungal are know to trigger various other "conditions" Tender or swollen lymph nodes are a signal your body is fighting an infection.
Our llmd has a protocol that he has used for MS patients, many have shown improvement. He is in SE PA near route 95, not a horrible drive from NY, unless you are in Buffalo!
posted
Update: I posted this elsewhere. Called Neuro...said if cancellation wanted to come in anytime, want test results. When I went to them I said I thought it was Infectious...
WHEW!! Mri and evoked potential normal!!!! Spondolysis? degeneration in C spine..no wonder its achy. Positive for EBV, CMV IGG, I think an old infection. Toxo still positive for IGG, IGM. Just confirms my original DX of myself. So they wouldn't consult with a LLMD (until I can get an appt.in 3 mos) then saw my PCP who won't either. Still I'm happy my test where n/l. I am not going for a tap or the EMG's. Am going to try to get an appt. with doc who specializes in Toxo since I still have it...and work on the lyme issue as well. I went to support group last night...they thought Bartonella...but I didn't ever have any of the typical rashes any who knows...I just need to get on a trial of antibiotics ASAP.
Posts: 145 | From NorthEast US | Registered: Aug 2005
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posted
Update: I posted this elsewhere. Called Neuro...said if cancellation wanted to come in anytime, want test results. When I went to them I said I thought it was Infectious...
WHEW!! Mri and evoked potential normal!!!! Spondolysis? degeneration in C spine..no wonder its achy. Positive for EBV, CMV IGG, I think an old infection. Toxo still positive for IGG, IGM. Just confirms my original DX of myself. So they wouldn't consult with a LLMD (until I can get an appt.in 3 mos) then saw my PCP who won't either. Still I'm happy my test where n/l. I am not going for a tap or the EMG's. Am going to try to get an appt. with doc who specializes in Toxo since I still have it...and work on the lyme issue as well. I went to support group last night...they thought Bartonella...but I didn't ever have any of the typical rashes any who knows...I just need to get on a trial of antibiotics ASAP.
Posts: 145 | From NorthEast US | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Get that IGeneX western blot -- the sooner the better. Before your trial of abx. Don't delay! Now, before abx, is your best shot at a positive finding!
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi there, I just wanted to let you know that you're not alone!
I have been diagnosed as having 'possible ms.' My MRI, Spinal Tap, etc. were all normal, but neuro still says she thinks it's what I have. I'm holding off on going back to her until I get my lyme results back.
I, too, can't decide what I really think about any of this; one day I'm convinced it's MS and the next I'm convinced it's lyme.
It's so confusing, especially when there are so many contradicting beliefs.
Verrrry frustrating!! Let me know how your treatment goes.
Posts: 106 | From Michigan | Registered: Oct 2006
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
Kumba: Dr. P. of Connecticut (ILADS) has a DVD out on the MS-Lyme connection. He did research on this subject, and it is available through: www.newhaven.edu/unh/lyme.
I have not see it yet myself. Waiting for it to be delivered!
Hope it is helpful to you! Nancy
Posts: 1487 | From New England | Registered: Oct 2000
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Almost exactly three years ago I began having scary neuro symptoms. PCP made appt. with neurologist....took almost three months to see him.
He ordered some tests but wanted to wait on others because "they are so expensive." I demanded to be given all tests necessary. Had MRIs, CAT scans, nerve conduction studies (ouch) and he performed a bit of physical tests in office.
He found nothing but did test for Lyme with Elisa. Received letter in mail saying "You do not have Lyme disease."
So for a short while I believed him. Then daughter started doing lots of research and when my grandsons tested with positive bands on WB, I decided to make appt. with LLMD out of state.
I have been reading and reading ever since. I tested positive on WB. I grieved over all the many years I have wasted on believing I had fibro, CFS and just about everything else but Lyme.
Now the challenge is to find someone who will prescribe long-term antibiotics. I also plan to use supplements and a rife-like machine, but will introduce each thing individually and slowly so I can tell what causes what sx.
I have used this phrase often and with humor: "If all you have is a hammer, everything looks like a nail," meaning docs, ducks, etc. try to put us in their specialties little boxes.
I believe there are many paths to wellness or getting at least parts of our lives back. I have to believe in improvement or I might as well buy the farm now.
MS is a horrible dx and people aren't given much hope of any major improvement. So with a possible dx of MS, I would look to other forms of treatment, especially refusing steroids (which I have taken and know they made me worse.)
There is so much great knowledge here, based on personal experience and research. I trust the members who generously post to be looking out for our best interests.
I don't fully trust my PCP, my neurologist, my endrinologist, my urologist, my psychiatrist, my many other docs over the years to see me as a complicated human being with a complicated medical history.
I do trust posters here though to be thoughtful, caring, concerned, intelligent, giving, thorough, empathetic, informed, and determined in helping me learn and not putting me into any box at all.
I read here every single day and always find something that helps. And I am so very grateful to those who put so much effort into trying to help.
Sometimes we're the teacher and sometimes we're the student and especially here, we are a bit of both.
Thanks to all! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I posted a bunch of relevant abstracts on another thread!!! Best wishes, Sarah
-------------------- 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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I have never been diagnosed or thought to have MS.
I tend to agree with the lyme and babesia diagnosis.
I am currently being treated for both. It is up and down for me also.
My body temp is very low all the time and my lymph nodes are swollen and sore often.
Right now, I am going thru a tough time with feeling really sick. However, I felt alot better during July and August.
September came, and I crashed. My immune system is not able to fight off colds, etc. So I feel sicker in the winter months.
Just a thought? Have you tried immune system boosters - supplements etc?
Hang in there, I've been crying all week but I am not giving up. There has to be better days ahead.
Hugs and prayers
karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
We have had SO many people diagnosed MS come to our support group and recover!!! Locally we have one ordinary doc who began treating his MS patients for Lyme and so far they have all responded!!!!!!!!!!!!!!!!!!!
-------------------- 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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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter has low body temp and swollen glands. She does not have MS. So, I would never accept MS as a possiblity until I had a good, reliable lyme test.
We weren't ready to accept fibro/CFS. That's a death sentence to a teenager.
Posts: 2903 | From AZ | Registered: Feb 2006
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