posted
i have been to 3 neuros and one who was a ms specialist and they have all looked at my spinal tap and mri results and confirm i have ms... my recent mri has shown several more lesions and 2 on my spine..within two years i am bedridden and now i have POTS which is rare for someone with ms... they are sending me to a ms specialist in vandy in june.... i am questioning my diagnoses of ms and i wonder if i have lymes disease.... could a spinal tap show negative for lymes and be wrong??? could the appearance of "dawson finger" like lesions still be lyme lesions?? i just can't understand why i have ms and have postural orthostatic intolerance syndrome too>>>> anyone have anything for me on this.... hugs to all>>>lisa
Posts: 40 | From ky | Registered: Apr 2007
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
My mom was, lesions on her brain and in spinal cord. she made significant improvements being treated for lyme. She has even said she will likely be able to travel again.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Lisa, and welcome!
I was misdx'd with MS, with 11 lesions and abnormal evoked potentials (somatasensory). My spinal tap was "negative" for lyme but showed elevated proteins and opening pressure. However, no oligoclonal banding.
The lesions you describe CAN be from lyme; not just MS.
Spinal taps find lyme only 10-20% of the time, if that, even though you may have it. Your doctor will likely be unaware of this and consider a negative tap to mean conclusively that you don't have lyme.
WRONG.
Before I would submit to ANY drugs for MS -- most of which will worsen lyme if you have it -- I would first consult with a lyme-literate doctor.
Antibiotics will not hurry the exacerbation of true MS; however, MS drugs will greatly exacerbate lyme disease. That is why it is imperative to consult with a doctor who knows his stuff.
MANY on here have original diagnoses of MS when in fact they had lyme all along. Many have made great strides or even recovered.
I would check it out!
Don't let your neuro berate you for doing further resesarch. After all, if he knew what he was doing, he would know how meaningless a negative tap is for ruling out lyme. This is not "lyme whacko talk" but actual, peer-reviewed studies. Problem is, MS specialists do NOT want to hear about lyme. They'd have a lot fewer patients!!
Be well and don't give up!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
what is really strange is none of the ms drugs like betaseron and tysabri worked for me so i am not on anything at the time... i'm thinking it is more likely that lymes would trigger a heart rate problem than ms would.... i'm not sure which disease i would rather have but it would be nice to know.. ok so what kind of doc. do i need and what test is most accurate because i feel like i am in the later stages... i am bedridden and just got my powerchair... going down hill fast.. hugs>lisa
Posts: 40 | From ky | Registered: Apr 2007
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Lisa, my mom's first Lyme test came back totally negative on just about everything, she had bands for nothing.
LLMD said her history which included a bull's eye rash tells him she has Lyme not MS, he started her on ABX. She quit the Avonex which had really helped but it shuts down the immune system, and even though she felt better, there were still signs she was going down hill.
After 2 months LLMD had her test again and she came back CDC positive for Lyme! Both tests were run through Igenex. Priming with ABX will often get the positive we are looking for.
She was REALLY late stage, like 30 since being infected.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
posted
one thing i remember when they did the spinal tap and mri they asked me if i ever had a rash or a tick on me....duh!!i live in ky... i did remember a strange small rash but didn't think it was a bullseye rash.. now here is my question..... can a bullseye rash come back anytime??? because a year after i was dx.with ms i had a huge rash on the back of my leg that spread and on one part it had a bullseye look and oozed really bad..... i have pics. and the doc said spider bite and they did do a local lyme test it came back neg. also..... what do you think????
Posts: 40 | From ky | Registered: Apr 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
We've had over a dozen MS diagnosed people in our local Lyme support group- some were diagnosed Lyme and then went on to develop MS- most diagnosed MS and then Lyme- ALL improved dramatically iwth IV Rocephin longterm!@!!! ALL improved-
MS presents identically as Lyme on MRI-
Most neurologists know nothing re Lyme or worse, THINK they know something but don't!!!
-------------------- 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
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes, spinals are OFTEN negative if you have Lyme because the spirochete converts into cystic form in spinal fluid and thus tests negative- read last sentence- see: **************************
1: Infection. 1998 May-Jun;26(3):144-50. Links
In vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid, and transformation to mobile spirochetes by incubation in BSK-H medium.
Brorson O, Brorson SH. Dept. of Microbiology, Vestfold Sentralsykehus, Tonsberg.
The purpose of this study was to examine the structural alterations of Borrelia burgdorferi when exposed to spinal fluid.
Normal, mobile spirochetes were inoculated into spinal fluid, and the spirochetes were converted to cysts (spheroplast L-forms) after 1-24 h.
When these cystic forms were transferred to a rich BSK-H medium, the cysts were converted back to normal, mobile spirochetes after incubation for 9 to 17 days. The cultures were examined by dark field microscopy (DFM), interference contrast microscopy (ICM) and transmission electron microscopy (TEM).
When neuroborreliosis is suspected, it is necessary to realize that B. burgdorferi can be present in a cystic form, and these cysts have to be recognized by microscopy.
This study may also explain why cultivation of spinal fluid often is negative with respect to B. burgdorferi.
PMID: 9646104
-------------------- 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
| IP: Logged |
posted
lisabeth, Everyone has given you excellent guidance.
Yes, a rash can come back. No, it doesn't have to look like a bullseye. A certain doc in Pa says watch out for so called, "spider bites."
My husband and sister are both MS dx'd, both being treated for lyme (lyme specific bands on Igenex test--but negative)and both are doing well.
A note about going to vandy---There are a couple of researchers there--Siiram and Stratton who believe Chlamydia Pneumonia can also cause MS like presentations and have treated MSers with abx (very similar to ones used in lyme) and people are better.
I'd find a good llmd, get tested at a good lab, but more importantly get treated and see how you do. What do you have to lose?---MS drugs are terrible anyway and if you already know that you don't respond to them go for it.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
posted
Check out www.cpnhelp.org. It's a website dedicated to c. pneumonia. Many of the people there were diagnosed with MS and have gotten better with antibiotics.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
posted
i figured out how to put this pic. on but here is what my rash looked like 1 year after dx with ms..... they said it was a spider bite... and it was alot worse before this pic... lisa Posts: 40 | From ky | Registered: Apr 2007
| IP: Logged |
posted
Looks like Lyme to me. And.... Plenty of lyme patients have POTS.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Yes, I was first diagnosed with MS. I have many brain lesions, but my spinal MRI was negative.
I think MS is one of the most common misdiagnoses for Lyme based on how many Lyme patients I know who had that as an initial diagnosis.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic