posted
I was "diagnosed" with MS for 15 years before getting "rediagnosed" with Lyme disease, and I DO have several spinal cord lesions as well as many in the brain. My doc (who did the lyme test) did NOT say that I don't have MS.
I tested positive on Western Blot (according to Igenex, not CDC), but how do I know that I don't have both Lyme and MS? I know of at least 2 other people on this site who have indicated that they have the lesions, but was wondering about everyone else. Any others with Lyme AND lesions?
Sorry. It's just alot to digest and understand. I want to make sure I do the right thing. I've spent years "treating" MS and am doing pretty well. I feel like I should continue all that I've done up to now and add the new protocol for Lyme.
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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posted
Lymetoo: Thanks for the info and motivating thoughts. I guess I'm not convinced that I'm going to get better because it's such a guessing game about waht to take and not take. Which medicines, which supplements to take. When to take this pill or that one. This one with food, this one not.
I'm so overwhelmed. I'm researching and asking questions to see what others do, but it's hard to figure it all out.
My doctor is very nice, but very busy and new to Lyme also. I've spent tons of money on out-of-state docs and dentists already, and can't afford to do that anymore.
I haven't even gotten close to the "feel worse before better" part of the physical symptoms. Right now it's my brain causing the problems.
Thanks for the reply. Jill
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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Pretty sure I have read that about 50% of long-term Lyme patients have brain lesions. Some also even have antibodies to myelin as well -- this has shown on hubby's bloodwork, but not spinal taps. Hubby has 4 or 5 brain lesions.
SPECT scan would be a more definitive test to differentiate betwen the two diseases. Also possibly the CD57 test.
And of course the easiest way to prove Lyme is to do a trial on antibiotics -- the herx is pretty definitive for Lyme. This won't rule out MS, but improvement in symptoms would be a step in the right direction.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm in the same boat. My MRI showed lesions, but my LP was negative.
My MS symptoms were getting worse so I went for a new treatment and was diagnosed with Lyme. That really threw me for a loop (especially after 20 years believing and trying to accept MS). I'm being cautiously optimistic--Lyme is certainly a better diagnosis.
I've stuck so much money into testing, supplements, etc. already but know I should probably have more.
I am taking antibiotics and after the 2nd day my feet were tingling. About a week later I felt awful (headache and totally wiped out) so I think that's a good sign and I'll continue with them for a while longer.
Posts: 46 | From Wisconsin | Registered: Sep 2006
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quote:Originally posted by tortiecat: I haven't even gotten close to the "feel worse before better" part of the physical symptoms. Right now it's my brain causing the problems.
So, you're taking abx now?? And your brain symptoms are worse? That's a herx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lymetoo: thanks for pointing out that my brain issues could be a herx too!!!
Bea: thanks for the info about your husband. My Cd-57 level was about 30 which I believe poitns to chronic lyme.
Kawai: thanks for sharing your information too - your story and experience. Sounds pretty similar.
I guess I'm not so stressed right now that I can't think straight. I definitely had symptom increase when I first started the ABX. Ane one symptom, headache, has gotten somewhat better. I don't doubt that I have Lyme. Just tyring to figure out if this really means it's not MS. There are things I do (special diet, supplements I take for MS, etc.) that I feel like I should continue just in case. If not for the lesions in both locationos (brain and spinal cord), I would totally forget about MS.
Thanks again for the very helpful replies. I'll get my act together soon.
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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posted
Tortiecat, I believe they are one in the same. Every symptom, every diagnostic test, even the geography of the diseases align.
There are some excellent research papers out there dealing with just this issue. One is, "Chronic Lyme neuroborreliosis at the root of MS- Is a cure with antibiotics attainable?" Also, there was a link put on this board where one may order a DVD entitled, "Chronic Lyme Disease: Connection to MS- Facts behind the controversy"
I also think that getting better after have "Lyme induced MS" can take a long time, in fact, some people may never see perfection if irraparable damage has been done.
My husband is getting better and suffered some fairly severe herxheimers.
I visit an MS forum where time and again forum members report strange reactions to abx--they think certain classes of abx can cause MS exacerbations--I bet you can figure out what the offending abx are active against. Can you imagine my extreme frustration of trying to explain what's happening to them and they just not having a clue?
I think the way you know you don't have MS is 1. you react negatively to abx (herx) 2. you get better
What is MS anyway? A description does not a disease make.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The DVD about lyme and MS at www.unh-lyme.org may be of interest to you. It's $15, and proceeds go to support Dr. S's research.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Tortie.
I think, first of all, that you need an LLMD to guide you in treatment. They just know SO much, compared to a non-LLMD. When standard treatments stall, they will have ideas where your regular doctor may be throwing in the towel. They may put far more stock in co-infections (correctly!) where your regular doc may be out of his league.
I think there's an MS-type response to lyme that people have.
Then I also think there's some cases of MS where there has been no lyme exposure at all.
Luckily for you, you're in the lyme camp.
I suspect a great many MS people are, but will never know it.
I have 11 brain lesions, which despite a year of antibiotics, have not gone away, plus some positive evoked potentials tests, though no oligoclonal banding on lumbar puncture. (Elevated proteins & pressure-typical lyme symptoms.)
My neurologist interprets these findings plus symptoms as MS. My LLMD interprets them, in conjunction with a CDC positive blot, as neuroborreliosis.
You may need the patience of Job and trials of many different combinations of antibiotics to hang onto progress. It's hard to imagine a non-LLMD having the staying power for this.
In short, my opinion is that it doesn't really matter if you have lyme and MS as long as you know you definitely have lyme. (Which you DO.) You can rightly expect that you are going to improve. No one can predict at what speed or by which combination of meds, but one thing's for sure -- if you have lyme, MS meds are NOT going to get you better.
Whew.
Did that make ANY sense at all?
Hang in there!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Sojouner: I agree that MS I just "A description." Good point!
Timaca: Thanks for info about the DVD. Will look into it.
Michelle: You did make sense and, as always, were very helpful. My doc is somewhat lyme literate, but new to the arena. I cannot afford to travel out of the area anymore or I would take your advice. But, I always check to see if others post about LLMD's in Central Florida.
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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