posted
I have a question about the MS/Lyme diagnosis. I've had Lyme for 4 years, been on abxs for 2. Never a question in my mind I had Lyme, until a trip to the hospital with severe vertigo and a visit from the neuro. He had me do an MRI and told me I have MS not Lyme. He wants me to stop taking the abxs and start treatment for MS. He would like me to do a spinal tap first to be sure. The only reason I might buy what he's saying is my father had MS, and the neuro tells me I have a 1 in 50 chance of having it also. Any info would be greatly appreciated, although I don't post often I've used this website like a Bible to help me through the tough times.
Posts: 69 | Registered: Jun 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Could your father possibly have had Lyme? True MS in men is not as prominent as in women. Also, did you ever have positive or at least indicative test results for Lyme or co-infections? If yes, then I would pursue that path of treatment. Have you benefited in any way from the treatment for Lyme?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Why can't you be treated for both? Have you improved on antibiotics? From what I read, it is hard to tell MS and lyme apart from MRI and spinal tap so I would probably want to add MS meds and see how you respond.
[ 26. November 2006, 11:03 AM: Message edited by: Melanie2008 ]
Posts: 4 | From Colorado | Registered: Nov 2006
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posted
I'm so sorry....and understand your confusion.
I would get a second opinion, and maybe a third, including your LLMD? or another one?
If you have MS, the meds are different. I know, as my best friend has MS. And I have lyme. Some of the symptoms are the same, but a lot are different.
She has more energy than me, but still gets tired if she overdoes it. I can't even do it to get overtired.
She lost control of her hands to hold things...I can still do this.
I'm not one to say ....prove to them you have lyme. I'd do all of the tests they suggest and try to have a consensus on your diagnosis from multiple medical sources.
I'll pray for you for the right answer.
I will tell you......my friend takes a shot of something every day that has helped her MS symptoms. Maybe her medicine is stronger than mine.
posted
I was misdiagnosed with MS when I had Lyme. As a result I passed LD on to my son while I was pregnant.
Please take into account that most neurologists might think you have MS and not Lyme if you haven't gotten better in their standard 4 to 6 weeks of abx.
IMHO a LLMD would be the best person to decide when dz you have since they are more likely to look at both possibilities given your tx history. Most neurologists would brush off LD at this point in your tx.
Also, my LLMDs consider me to have MSish LD. The MS meds never helped me. The LD tx has.
Indeed epidemiological studies show that there is a genetic component to MS however some LLMDs believe that there is also a genetic component that predisposes a patient to develop LD as a result of a tick bite. (Epidemiological studies also show that there is a geographic component to LD (some degrees north or south of the equator - my MS knowledge is rusty these days) however that seems to match the areas where LD is prevalent.
Good luck and send me a PM if I can be of further assistance, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
Nancy, Wow, what a tough situation to be in. But I so agree with what everyone said above.
Severe vertigo as you know can be from Lyme. And what did he see on the MRI that is convincing him that it is MS? If lesions, ask him how HE can differentiate those of Lyme vs. M.S. It is likely you would have them no matter what. I personally would not do the lumbar puncture, I don't think it will show anything. My opinion only.
Why is it most neurologists brush of Lyme??? Seems they always want to go by way of M.S. or someother neurological disorder.
Get another opinion, and like tothepoorhouse said, prove to them you have lyme.
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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bettyg
Unregistered
posted
By any lucky chance, is your Dad still ALIVE where he could be given western blot igm and igg?
Noticed you mentioned MS, and I'm copying from ACTIVISM here a link to SIGN MS PETITION; here's details:
posted
Betty My dad passed away about 10 years ago. He was diagnosed with MS before I was born, but I don't think there's any question he had MS. I have definitly improved with abx treatment over the last 2 years, but I have also had set backs which I always thought were herxes. I do have an appt with another neuro, who treated a freind for lyme. Multiple lesions did show up on the MRI, I asked him how he knew they were from MS and not Lyme and he said he could tell the difference. I've been told he's an MS specialist. He doesn't disput the Lyme, he feels I have both, but doesn't believe in long term abx treatment.
Posts: 69 | Registered: Jun 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Nancy,
MS is a disease NANED FOR A SYMPTOM. Multiple sclerosis, multiple hardening, multiple lesions...it is TRIGGERED by a pathogen creating an immune response.
Neurologist lost their common sense since they are taught by drug company studies.
Why would your immune system suddenly go haywire and attack your body ???? Body isn't made to do that.
I agree with Denise's comment about most neuros assuming you do not have Lyme if you're not better within 4-6 weeks of treatment.
Lyme causes vertigo too and, as you probably already know, is often misdiagnosed as MS. What if your father actually had LD and not MS?
Be very careful on what you decide to do. MS meds suppress the immune system and this most definitely is not good for someone with LD. MS meds will make someone with LD very ill.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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When you see the neuro again, ask him specifically how he distinguishes MS from Lyme. I think we would all like to know exactly how that is done.
I've yet to hear of a doctor who was an expert on both MS and Lyme, publish the results of any research making the distinctions your neuro claims.
I do hope he can do it, as the medical community really needs to know this information.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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MS is a disease NANED FOR A SYMPTOM. Multiple sclerosis, multiple hardening, multiple lesions...it is TRIGGERED by a pathogen creating an immune response.
Neurologist lost their common sense since they are taught by drug company studies.
Why would your immune system suddenly go haywire and attack your body ???? Body isn't made to do that.
you are right on. heres what nih.gov has to say about ms
("An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. ... In the case of MS, it is the nerve-insulating myelin that comes under assault. Such assaults may be linked to an unknown environmental trigger, perhaps a virus.")
there are studies were in most of MS patients an environmental trigger was found. most have mycoplasma and many have lyme disease.
wikipedia defines ms as: The name multiple sclerosis refers to the multiple scars (or scleroses) on the myelin sheaths.
scaring is also where fibromyalgia gets its name. like fibriods, fibers. i have scaring in my brain but they said it was lyme. perhaps someone else might have read this as ms. especially if i was older, and did not live close to lyme connecticut.
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
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posted
I agree that what DMC and Break are saying as a theory, but I think it's dangerous to make sweeping and definitive conclusions about things where there is really so little known.
The body is also not made to have cell-growth go nuts and turn into tumors, but it happens.
I haven't gotten my lyme test results back yet (tomorrow - gulp), but I've been diagnosed with "possible MS" and my neuro wants me to begin treatment for it if my Igenex results come back negative.
It's a terribly confusing position to be in, and I'm sorry you're having to go through it.
I agree with tothepoorhouse. Gather all the information and medical opinions you can and try to have your doctors reach a consensus.
I also agree with pinchot; my neurologist wants no part in a discussion of lyme and wants to dx me with MS asap.
But if you've done lyme treatment for two years and continue to feel like you're getting worse, I might consider switching the approach and looking at it from the MS perspective.
Just what I feel I might do if, in four years, I'm still in this position.
On the other hand, never give up hope!
Good luck, and please keep us updated!
Posts: 106 | From Michigan | Registered: Oct 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Sorry to hear about your situation, but since I am in the same position, I understand completely.
Neuro never came right out and said I have MS but wants me on MS medications. I have over 15 abnormalities in my white matter. (Neuro says it's semantics. They're lesions.)
Had IgG in the CSF. No Lyme showed up in the CSF. No surprise there as it hardly ever does.
Did you have evoked potentials? Where they measure the length of time it takes for messages to travel the spinal column to the brain stem?
Lyme is the great imitator. My positive test results can be from LD.
Still don't know what I'm going to do, but the MS drugs are extremely caustic and some shut down the immune system.
Right now I am on natural supplements; i.e. cat's claw, etc. and am under treatment with an LLMD. I am very skeptical of all doctors at this point.
See my post earlier this mounth in Medical Questions: "Neuro says I won't walk again..." if you're interested.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Nancy, I am going to add my story to this post instead of starting another. It is essentially what I am going through too and many of the questions here are the ones I'm asking too.
I've been sick for about 8 years, misdiagnosed as chronic fatigue for 3 and thank god, diagnosed with lyme last year. I have a wonderful LLMD who is advising me on this lyme/MS dilemma as we go along.
I've taken abx for a year and added herbs the last 4 months. I have recently developed tremors down my arms and have started losing my hand grip. I will drop things that I'm holding in my hands. I also have an overall weakness.
My family practitioner is concerned that I haven't recovered property from lyme and wants me to pursue testing for MS with a neuromuscular MD. I feel her heart is in the right place but doesn't understand lyme.
My LLMD says he welcomes any new information but isn't alarmed at what is happening. I'm not opposed to some testing for lyme but am not going to be a major guinea pig for docs trying to cover their butts either.
My main questions are: Is there one test or tests that are good indicators of MS? I have searched this topic on lymenet and get a feeling that a spinal tap isn't a very reliable marker.
What treatments/medications have any of you tried for MS and what are your comments regarding them.
Any feedback is appreciated and will be happy to share mine as I go along.
Posts: 460 | From Illinois | Registered: Aug 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Is Lyme the Great Imitator of MS or does Lyme trigger MS? There is no one test for MS and actually the only way to diagnose it is clincally -- somewhat like Lyme -- using test results for info!
Does anyone's LLMD have any thoughts on that? My LLMD always puts MS and insect borne infection on my receipts. I think she treats them as two separate issues.
Is it a question of semantics?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I was 'misdiagnosed' with MS about 10 years ago, but have had slight symptoms for 20. I had an MRI and spinal tap (never again). My doctor encouraged one of the MS drugs and said, 'take your pick'. They just don't know how/if/why they work, but it's all they have. I saw no improvement and the Avonex made me ill for a day or 2. When they switched to a pre-mixed solution, I had a really bad reaction and stopped it altogether. Was on pulse steroids once a month, but when they stopped working, I decided to see a specialist.
In August I went to a LLMD and had all the tests done. His review of the his test results, my previous tests (MRI and spinal), and physical exam showed that I was misdiagnosed with MS and actually have Lyme disease.
Unfortunately, the steroids and other meds really suppressed my immune system and I have to build it back up before starting Ketek (next week).
It's a tough call and I'm still not convinced. How can something like this happen in this day and age? I really question our medical society and hope they catch up some day.
Since the outlook for MS is rather bleak, I feel I have to go with the Lyme diagnosis and aggressively treat it the best way possible. Who knows, maybe that's why so many people with MS improve on antibiotics because they truly have Lyme.
Good luck!
Posts: 46 | From Wisconsin | Registered: Sep 2006
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Thanks for the link, I had read something about low dose naltrexone here but I need to research this further. Thanks for jogging my memory. This sounds like it has some promise.
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
I am on LDN and although I've not seen the improvement like some, I've been stable (no attacks) in 5 years. My LLMD was happy that I was on LDN and encouraged me to stay on it.
Posts: 46 | From Wisconsin | Registered: Sep 2006
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WOW, that's a rough situation to be in.
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