posted
He did the second MRI "from a different view" and called to tell me that the MRI is VERY consistent with MS. And wants to do a spinal tap, but he's already recommending treatment for MS. My leg cramping has NEVEr been like this. Really bad for the past month. For those of you who didn't read my last post, I have had Lyme for 16 years...but never this exaggerated muscle cramping ang twitching Now I feel like I must have both...Please, if you have any thoughts. Please let me know.
Posts: 298 | From los angeles | Registered: Mar 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Well, there isn't anything that says one can't have both MS and Lyme. Do you have a good Lyme Literate doctor? What does she/he say?
Somewhere I have an article comparing MS and Lyme. I will send that on to you for what it is worth.
Hang in there. Maybe the meds he comes up with for MS will actually help your muscle probs.
I will send that article to you in a private message.
posted
Thanks so much.Going to Lyme doc on Sunday. Just really scared. MS seems so morbid. That's why I am so worried. It leads to permanent paralysis. Lyme seems to be more hopeful.
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
Let's hope not. Yes, what does your LLMD say??
Whatever you do, try to avoid taking anything even resembling a steroid!!!!
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Couldn't send you a private message, so I will post the article here. I have split it up to make it easier to read. Ann - OH
[quote] The Lancet, August 3, 2002 v360 i9330 p352. Bacterial infection as a cause of multiple sclerosis.
Christina Wolfson and Pierre Talbot
Full Text COPYRIGHT 2002 The Lancet Ltd.
Multiple sclerosis is an inflammatory demyelinating disease in which the immune system of genetically susceptible individuals is inexplicably activated to attack the central nervous system. Epidemiological studies strongly suggest that environmental factors are involved on a background of genetic susceptibility. (1) The possible involvement of infectious pathogens, most often viruses, has been much studied. (2,3)
Multiple sclerosis has a unique geographic distribution--temperate zones have a low prevalence and more northerly areas have a prevalence more than ten times that in warmer climates. (4) Sanitation, climate, ultraviolet radiation,hours of sunshine, socioeconomic status, and other environmental factors have been examined with little success. (1)
Much early research used case-control designs with potential recall bias. (5) More recently, seroepidemiological research has suggested the involvement of infectious pathogens in multiple sclerosis: specific antibody responses in cerebrospinal fluid and blood, isolation of the pathogen from tissue of patients with multiple sclerosis, or in-situ or ex-vivo pathogen detection.
The results have rarely been harmonious. Laboratory markers cannot be easily studied at the population level because infection by some agents (eg, with human herpesvirus 6 or Chlamydia pneumoniae) does not result in identifiable clinical disease, or infection occurs in childhood and is not reliably reported by study subjects.
The convergence of epidemiology and seroepidemiology of research, however, is seen with Epstein-Barr virus. (6,7) Data from the Nurses' Health study, (8) for example, show a moderately increased risk of multiple sclerosis in nurses with a history of infectious mononucleosis (odds ratio 2.1, 95% CI 1.5-2.9).
Taking only those nurses whose report of infectious mononucleosis was confirmed by a positive heterophil-antibody-test, the risk remained (2.3, 1.6-3.5). Although there was no association found between multiple sclerosis and reports of other common viral diseases before disease onset, there was an association with mumps after 15 years of age and with late age at measles infection.
Whether Epstein-Barr virus is a necessary cause requiring additional triggers to produce disease or merely a marker for a true cause is unresolved. (9)
Infection with Borrelia burgdorferi, the spirochaete responsible for Lyme disease, can involve the central nervous system and the later stages of the disease may mimic the clinical symptoms of multiple sclerosis. (10)
Seroepidemiological studies of B burgdorferi and multiple sclerosis have produced conflicting results. Chmielewska-Badora and colleagues (11) reported that ten of 26 (38%) patients with multiple sclerosis were seropositive for B burgdorferi compared with 149 of 743 (20%) patients with other neurological disorders p=0.042). Yet others reported negative findings. (12,13)
More recently, O Brorson and colleagues (14) studied the presence of the infectious agent, or at least its cystic structure, in the cerebrospinal fluid of ten patients with multiple sclerosis, in five controls who had lower back pain, and in one patient infected with B burgdorferi.
Cystic structures were found in eight of the ten with multiple sclerosis with use of immuofluorescence before culture and in all the multiple sclerosis patients by transmission electron microscopy and acridine-orange staining.
No cystic structures were found in the controls with any method. The investigators also reported a positive reaction to antispirochaetal antiserum, a similarity between the cystic structures with known cystic forms of spirochaetes, and the similarity between the cysts found in the multiple sclerosis patients and the patient with B burgdorferi infection.
These results led the team to suggest that the multiple sclerosis patients were infected with a spirochaete, most likely B burgdorferi. Whether this infection really was B burgdorferi and whether it occurred before or after the onset of multiple sclerosis cannot be determined from this study and indeed, given current methodology, it is difficult to imagine how this could be determined.
Whether infection with B burgdorferi is a cause of multiple sclerosis or whether it is merely a result of heightened susceptibility of multiple sclerosis patients to infection due to damage to the blood-brain barrier remains one of the enigmas of multiple sclerosis research.
Indeed, this caveat applies to all infectious pathogens that have been associated with multiple sclerosis. Current thinking on how infections could trigger the autoimmune/immunopathological manifestations of multiple sclerosis target the following mechanisms: molecular mimicry between the pathogen and myelin antigens, determinant spreading after injury to the central nervous system by the pathogen, and bystander inflammation caused by central nervous system infection. (3)
It needs to be explained how a ubiquitous infection, such as that with Epstein-Barr virus, could be involved in the pathogenesis of multiple sclerosis.
Moreover, several pathogens could be associated with multiple sclerosis and their presence in the central nervous system may not be a necessary requirement for disease initiation or perpetuation.
(1) Granieri E, Casetta I, Tola MR, Ferrante P. Multiple sclerosis: infectious hypothesis. Neurol Sci 2001; 22: 179-85.
(2) Alvarez-Lafuente R, Martin-Estefania C, de Las Heras V, et al. Active human herpesvirus 6 infection in patients with multiple sclerosis. ArchNeurol 2002; 59: 929-33.
(3) Talbot PJ, Arnold D, Antel JP. Virus-induced autoimmune reactions in the CNS. Curr Top Microbiol Immunol 2001; 253: 247-71.
(4) Rosati G. The prevalence of multiple sclerosis in the world: an update. Neurol Sci 2001; 22: 117-39.
(5) Wolfson C, Granieri E, Lauer K. Case-control studies in multiple sclerosis. Neurology 1997; 49 (suppl 2): S5-S14.
(6) Ascherio A, Munch M. Epstein-Barr virus and multiple sclerosis. Epidemiology 2000; 11: 220-24.
(7) Marrie R, Wolfson C. Multiple sclerosis and Epstein-Barr virus. Can J Infect Dis 2002; 13: 111-18.
(8) Hernan MA, Zhang SM, Lipworth L, Olek MJ, Ascherio A. Multiple sclerosis and age at infection with common viruses. Epidemiology 2001; 12: 301-06.
(9) Wolfson C. Multiple sclerosis and antecedent infections. Epidemiology 2001; 12: 298-99.
(10) Karussis D, Weiner HL, Abramsky O. Multiple sclerosis vs Lyme disease: a case presentation to a discussant and a review of the literature. Mult Scler 1999; 5: 395-402.
(11) Chmielewska-Badora J, Cisak E, Dutkiewicz J. Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study. Ann Agric Environ Med 2000; 7: 141-43.
(13) Schmutzhard E, Pohl P, Stanek G. Borrelia burgdorferi antibodies in patients with relapsing/remitting form and chronic progressive form of multiple sclerosis. J Neurol Neurosurg Psychiatry 1988; 51: 1215-18.
(14) Brorson O, Brorson S-H, Henriksen T-H, Skogen PR, Schoyen R. Association between multiple sclerosis and cystic structures in cerebrospinal fluid. Infection 2001; 29: 315-19.
* Christina Wolfson, Pierre Talbot * Department of Epidemiology and Biostatistics, McGill University, and Centre for Clinical Epidemiology and Community Studies, Lady Davis Institute for Medical Research, Montreal,Quebec, Canada; and Institut National de la RechercheScientifique, Institut Armand-Frappier, University of Quebec, Laval, Quebec (e-mail: [email protected])[end quote]
posted
did you have a MRI of brain and c spine?? Where were your lesions?? I had to have the spinal tap, it doesn't hurt. They look for oligbands and increased protein that go up with autoimmune responses. Lyme mimics MS. Do your symptoms come and go??I don"t know if you've had this for a while it could be very mild MS which I think is easier to control symptoms then chronic lyme. Good luck and keep us posted
Posts: 41 | From new york | Registered: Mar 2006
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posted
I had an MRI of the brain and no spinal tap yet. Isn't having MS much worse though?
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
they didn't do a MRI of your neck?? If you have symptoms in your leg I think the lesions would show in your c-spine MRI. Ms sounds worse , but there are all kinds. My friend has had MS for 20years ands drags her foot a little. At times can hardly stand. Get the tap I was obsessed that I had MS and was freaking out. Do you have any ativan or xanax. Take one before the tap. Are you young?? did you ever have optic neuritis??
Posts: 41 | From new york | Registered: Mar 2006
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posted
No MRI of my neck. The doc's ordering them are ducks. Seeing my Lyme Doc Sunday. Hope he can make sense of all this.
Posts: 298 | From los angeles | Registered: Mar 2006
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bettyg
Unregistered
posted
LA, I'm sorry to read about what the doc had to tell you.
To me from what I know of chronic lyme & MS; they are both are the same perspective. Lyme is also deadly as MS is.
Do a search on here for MS and lyme? Should be many posts. Look for one from DAYSTAR; she's starting a MS/LYME chat group. Best wishes....
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posted
Lalyme, I've had a spinal tap. No, it wasn't fun but it may come back negative for MS. Many do. Then you will know it's lyme, not MS.
Don't count on it showing lyme though. Chances are, it will be negative for lyme even though you have it.
Posts: 340 | From Ohio | Registered: Oct 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
regarding Spinal Taps this from a lymenet thread I had saved: Oligoclonal bands (OCB) and Lyme � Thread Started on Sept 9, 2005, 4:00pm �
-------------------------------------------------------------------------------- Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP).
The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques. Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination. I
n Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy.
posted
Thanks so much everyone. Seeing Lyme doc tomorrow and will let you know what happens. God Bless
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
Just keep in mind that there are no definitive tests for MS.
MS is generally a "disease" that is ruled in by ruling everything else out. It's kind of a last resort thing.
I'm not sure any physician can be absolutely sure a person has MS, but some will certainly make that statement.
Also, oligoclonal bands and myelin basic protein can show up in the CSF of Lyme patients.
I don't want to imply that MS doesn't exist, but it's not something that can easily be diagnosed like checking for strep.
I believe that currently a criteria has to be met for a diagnosis of MS and one of them is something like 2 exacerbations or "attacks" 6 months or greater apart.
I don't think most neuros would diagnose MS just by looking at MRIs because lesions show up for a number of problems that can cause breaches in the myelin of nerves.
You're definitely going to have to be your own advocate for your health. Do a lot of research on MS and Lyme. If you suspect that you have Lyme, then I think the most important thing is NOT to take any steroids.
My mother has recently been diagnosed with Lyme after 13 years of a MS diagnosis. She did take steroids and is currently bed bound, unable to use her legs or her right arm/hand. Her left arm is severely affected but is the stronger of the two. Her health status is considered "devasated" by nueors. I think steroids played a big part in her current condition.
Good Luck!
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
this must be hell for you!!
don't think that you have to coordinate between the neuro and the llmd. ask the llmd to call the neuro to conference about you and your condition(s) so that you will not have to do that.
i wish you much luck
keep us posted
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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If I had it to do over again, knowing what I know now, I would have some of the CSF from the spinal tap tested for Lyme and coinfections; your LLMD should be able to help make this happen. Hurry, while they still have some fresh sample.
I remember that awful phone call from the neuro saying that I had MS. I was misdiagnosed with MS for over 3 years, had a child, got really sick, got diagnosed with LD, then had my son tested for LD - I passed it on to him! I'm getting better slowly but surely.
Glad you have an LLMD now!
Best of luck in your treatment, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
As others have indicated, in this age of rampant, runaway specialization, every doc sees the root of the problem as something connected with hsr own field of specialization. This fault may apply to lyme docs on occasion, too, though they are probably in general more sensitive to it because of all the misdiagnoses coming down the pipes with regard to lyme.
Lyme causes many of the same symptoms as MS. And in general. docs who aren't well-versed in tick-borne diseases face the "it-couldn't-be-lyme" propaganda perp'd by the L.I.M.D,'s (lyme illiterate m.d.'s).
So take heart. The probability that you suddenly have lyme and ms after years of decent health (if indeed that's the case, which, I admit, I am kind of assuming) is very low. Not impossible. But life is all about probability! The correct diagnosis would be the most probable one, given the data observed. I have heard of lyme skewing the markers that are used to test for ms. That could be what's happening.
I am not a medical doc, but I do have a logical mind. It would seem that the treatment for lyme is not "contra-indicated" for m.s.-- that is, taking antibiotics will not make the m.s. worse. On the other hand, if the treatment for m.s. involves steroids, these drugs are known to make lyme much worse. In view of these thoughts it would appear that a trial treatmet for lyme (ie, high dose or i.v. antibiotics) would be a good idea. If there is no effect after several weeks, the diagnoses might be revisited.
Testing by a lab such as igenex or Bowen, if they are still testing for lyme and co-infections, may help you decide, too, but if you are sure you did indeed at least have lyme, that's probably what it is. In that case it's possible you have one or more co-infections, too (other diseases carried by ticks, and if you have lyme you probably got it from ticks --do you recall tick bites?-- If so, to even think about m.s. is ludicrous until trial treatment for lyme and state-of-the-art testing for co-infections has been done.) DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
If you have an LD diagnosis there is no need to persue the MS one. Chances of having both is extreemly low. IMO it's just a waste of time and money. Talk to your LLMD about an abx change.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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