Topic: known positive lyme can it progress to ms??
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
friend has ms dx confirmed by spinal tap and raynoud's syndrome.
she had previous hx of dx and tx of lyme disease. known tick bite and eg rash tx was done but insufficient can lyme disease turn into ms , or does she still have lyme???
maybe needs iv abx??????? have not read but know there is a connection between misdx of ms which was actually lyme.
can lyme have same symptoms and disease process as ms????? docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
Lyme disease and MS can have the same disease process, including the exact same findings on MRI.
If I were your friend, I would aggressively pursue the possibility that he/she still has Lyme and/or coinfections. Lyme and coinfections have treatment that can lead to cure. MS does not.
I would never let anyone send me down the road of "no hope for cure" unless I had exhausted all other possibilities.
I hope your friend does the same.
P.S. MS and Lyme have the same geographic distribution pattern. If MS were a purely genetic disease, it would be evenly distributed throughout the country or would be distributed based on ethnic (think sickle cell) or other factors. It's not; it's distributed in the same pattern as an infectious disease: Lyme.
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
Well said hokie. If you research, even the MS foundation is saying that they now think there is a infectious componenent to MS because of the number of patients who's spouse ended up being diagnosed with MS. Of course they say a viral component is what they claim.
If your familiar with medical/microbiology research you know that most research dollars go to genetics and viruses not bacterial. Hence they specify "possible viral component".
MS is Lyme. There isn't a neurologist or MD likely to admit this and more than likely would admonish me for saying that statement. Unless of course it is my LLMD. But if you really look you will come to the same conclusion.
Drat us being patients that think for themselves and refuse to be spoon fed our diagnosis!
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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bettyg
Unregistered
posted
hi dave,
art dougherty did outstanding work on showing the 300 other illnesses mimicking lyme...
this is the 1 link but he's taken down that MS/lyme link and had medical abstracts backing up each of other mimicking illnesses!!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I cannot get the link to go through or find in at the home site under the articles. If you need to see it at the link, contact the site manager of PHA - but I could not figure that out either.
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis
by Ginger Savely, FNP-C
How many of you have surfed the Web to look for a diagnosis to fit the symptoms that you or one of your loved ones is experiencing?
As a nurse practitioner I often see patients who, when dissatisfied with a diagnosis (or lack of diagnosis) given to them by a health care provider, look to the Internet to discover what is really wrong with them.
Many of my colleagues scoff at this behavior, saying that the Internet is the worst thing that has ever happened to health care.
They are displeased when patients come in with a probable diagnosis already in mind and present a list of tests they are convinced are needed in order to prove or disprove their conclusion.
The concern of many health care providers is that the information on the Internet is unreliable and that it encourages patients to obsess over symptoms and even to imagine new symptoms in order to fit the criteria necessary for a certain diagnosis. ``A little bit of knowledge is a dangerous thing,'' they often say.
Most of the patients I see have been through the mill when it comes to doctors and testing and have lost their faith in the health care system that has failed them.
So, it comes as no surprise to me that these patients have learned to take their health care into their own hands, educating themselves to the point of being able to speak ``medicalese'' like a pro.
Time and time again I have observed that this tendency on the part of patients to become medically educated has been to their advantage, and many a life has been saved or bettered through the process. In my opinion this proactive behavior on the part of patients should be encouraged.
Maria: A Case in Point
Maria lives in Austin, Texas and is a petite, 49 year old lady who appears younger than her age. During our first encounter she explained that she was frustrated and unwilling to accept a recent diagnosis of multiple sclerosis (MS).
She had been experiencing recurrent right-sided facial pain (trigeminal neuralgia) for five years which had led her to consult a neurologist. An MRI brain scan had shown white patches indicative of nerve inflammation.
A spinal tap had revealed unusual proteins consistent with an MS diagnosis, and a recent repeat MRI had shown progression of the disease with increased number and size of the inflammatory lesions.
Based on her symptoms and these findings, her neurologist had diagnosed her with MS and advised her to begin immunosuppressive therapy in order to decrease inflammation.
Maria had been researching her symptoms on the Internet, and had become convinced that her problem was actually related to advanced neurologic Lyme disease.
She had been unable to convince her neurologist that this might be the case. He felt it was a clear-cut case of MS and was not inclined to consider the possibility of an illness that did not appear to be endemic to central Texas.
To placate her he had ordered a Lyme screening test, the ELISA test, which had come back negative.
Because Maria was convinced her problem was due to a bacterial infection, she refused to follow the advice of her neurologist to begin immunosuppressive therapy, fearing that this would affect her ability to fight the infection.
Maria came to me because she had heard of my special interest in the diagnosis and treatment of Lyme disease. I reviewed her medical history and made special note of her report of a tick attachment to her right lower leg six years earlier, followed by a 5 inch bullseye-shaped rash. This had occurred while she was camping in a rural area of central Texas.
Symptoms had started soon afterward. Some of these symptoms were typical of both Lyme disease and MS, such as insomnia, anxiety, confusion, dizziness, weakness, numbness, blood pressure fluctuations, constipation, acid reflux, urinary urgency, and exhaustion.
She was also experiencing symptoms that were typical of Lyme disease but not of MS: joint pain, muscle aches, jaw and tooth pain, ringing in the ears, and a stiff neck.
Many classic MS symptoms were missing, such as optic nerve inflammation, double vision, abnormal eye movements, spasticity, muscle atrophy and balance problems.
Her in-office physical exam did not reveal any obvious abnormalities.
I was familiar with a study published by the Texas Department of Health in 1994 that had revealed that over 1% of ticks collected in eight Texas state parks had tested positive for borrelia spirochetes, the corkscrew-shaped causative agents of Lyme disease.
In fact, per the International Lyme and Associated Disease Society (ILADS), borrelia-carrying ticks had been found in every state in the union. The rash Maria had described on her leg certainly sounded like erythema migrans, the classic ``bullseye'' rash that is diagnostic for Lyme disease.
Her negative result on the ELISA screening test that had been ordered by her neurologist didn't impress me; ELISA tests for Lyme borreliosis are notoriously insensitive. There is evidence that the ELISA has a sensitivity of only 30-40% and therefore does not meet the 95% sensitivity criteria necessary for a screening test.
The Western blot is a better test to use for screening. Unfortunately most labs do not report the individual reactive bands on the blot but report only a positive or negative end-result based on the presence of bands relevant for epidemiologic rather than diagnostic criteria. It is of utmost importance to choose a lab that reports ALL of the positive bands.
Diagnosis of a sick patient and qualification for epidemiologic inclusion are two different matters! I chose to use the highly reputable IGeneX Laboratories in Palo Alto, California.
Through IGeneX testing the patient was positive for Lyme both by the Western blot IgM and by antigen captured in the urine. The history, symptoms, and now the lab results were pointing to a diagnosis of late-stage neurologic Lyme disease (neuroborreliosis) rather than MS.
After three months of intravenous (IV) and oral antibiotic treatment, Maria reported several subjective improvements. Her overall fatigue, urinary frequency, and discomfort were lessened. The numbness in her hands and feet was gone, as was her subjective sensation of weakness.
Maria continued to tolerate the treatment well. After six months of IV antibiotics a repeat MRI showed a 25% reduction in inflammatory lesions. She reported overall improvement, with continually decreasing fatigue, malaise, weakness, cognitive problems, and muscle pain.
She continues to improve on IV antibiotics.
MS is a progressive disease, and although remissions are common, a reduction in brain inflammation is not.
This improvement in the patient's MRI was quite a surprise for the neurologist and served to strengthen my belief that the patient's problem all along had been neuroborreliosis rather than MS.
Because of the many similarities in the two diagnoses, it is extremely important to pay attention to the patient's history and development of symptoms and to know how to test correctly for the presence of borrelia antibodies.
MS is a diagnosis based primarily on subjective symptoms, and according to the CDC, Lyme disease is as well.
The previously mentioned MRI and spinal tap findings in this patient were not diagnostic of MS per se, since they are often also present in Lyme patients with neurologic involvement.
When clinicians complain about the incorrect medical information patients come across on the Internet or the tendency for patients to self-diagnose based on this information, they need to look at the bigger picture and realize that the occasional enlightening discovery is well worth the inevitable false alarms.
I continue to support patients who research their symptoms on the Web, believing it empowers them to be proactive about their health care. Sometimes, as was the case with Maria, this kind of patient collaboration can prove to be a life-saver.
See also:
Fritzsche, M. Chronic Lyme Borreliosis at the Root of Multiple Sclerosis: Is a Cure with Antibiotics Attainable? Medical Hypotheses 2005; 64 (3): 438-448.
posted
I agree with hokie. Also, mention to your friend that many of us have Raynaud's. I know I do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Neuro-Opth said hr suspected that I had "MS secondary to Lyme".
I developed Optic Neuritis & started getting Sx flares when my body temp got elevated. (known as Ufthoff's phenomenon, was the means for Dx MS for 50 yrs)
I had no lesions on MRI. I DID have hypoperfusion on the SPECT scan, REALLY low CD 57 and positive WB & Lyme Dot Blot.
I also had several more co-infections & the skewed EBV-EBNA that's been found in MS brains. I'm thinking that perhaps it has something to do with the EBV & Lyme.
I'm sorry but I didn't get the spinal tap to try to confirm MS because my LLMD is going after Lyme & COs again and the spinal tap wouldn't change my Tx at all. He wouldn't DARE put me on steroids.
LLMD put me on IV Rocephin again AND Biaxin. I'm also doing Zhang's Artemesiae, Copmine, Allicin, Circ P (periodically), HH (here & there).....
I'm going to talk to him again about anti-virals when I go next week because the EBV titer skew thing makes me nervous. Some of the herbs I'm taking do address viruses though.
I WOULD suggest that your friend get to an LLMD quickly for a reevaluation of the Lyme. If they just accept MS & Tx with steroids, they could be in HUGE trouble.
Nice to see you Stymie! I hope YOU are doing well.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
To answer more concisely....
AbsoFREAKINlutely.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
ali don't forget antiyeast ie diflucan or vfend these are needed for any iv abx with probiotics or not. the body can not help but getting systemic yeast with high doses of abx. this is one of the reasons ids does not recommend long doses of high strength abx.
systemic yeast and fungi can mimic lyme and co's even if lyme is maintained. i did not go into remission until i took vfend for 10 weeks after abx treatment.
no amount of probiotics will maintain adequate normal flora maintenance with high dose abx. also antivirals ie acyclovir is also necessary
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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What you said is interesting about viruses being the suspected cause of MS (as well as other conditions) as opposed to bacteria.
I had never considered why this might be so (why researchers would suspect viral as opposed to a bacterial etiology)until recently...
Having read Cure Unknown, I was reminded of something within the field of infectious disease that had hovered on the periphery of my knowledge but out of immediate awareness until Weintraub stated it explicitly... after the discovery of penicillin, infectious disease doctors believed that ALL bacterial infections would be eradicated from the face of the earth within a few decades... naturally, this was an absurd belief, but it was the zeitgest of the time... and that was barely 60 years ago!
I think we are seeing "holdouts" or leftovers of that philosophy...
It is just a matter of time until it changes...
Posts: 129 | From Virginia | Registered: Feb 2008
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AliG
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Member # 9734
posted
Thanks docdave, for the reminder on the antivirals and anti-yeast.
I thought I was covering the yeast with the herbs but LLMD said my tongue looked like there might be a little coating & gave me 30 days of Diflucan.
I started to talk to him about addressing the viral factors and somehow got sidetracked (AGAIN!! )
I wonder if the antivirals might interact with the Biaxin. (Biaxin has quite a long list of interactions.)
I'm also starting to notice that my BLO Sx seem to increasing again. I'm guessing that the Biaxin isn't giving such great Bart coverage.
This has become SO ridiculous. When I took down Babesia, Lyme Sx increased. I worked on the Lyme, BLO stepped up. I tried to take down BLO and the darn viruses attacked me. That was the start of the Optic Neuritis & Ufthoff indicating secondary MS.
I don't even KNOW what the Sx relating to Mycoplasma would be to known when/if that's been Sx factor in all of this. I guess I should go look that up again.
I really like your philosophy of getting rid of all the little buggers at the same time & then rebuilding the immune system afterward.
It makes an awful lot more sense to me than this half-arsed underTxing one at a time that it seems my LLMD's been doing.
I think they should just mix up a formula of ABX to cover ALL possible TBDs, anti-yeast, anti-viral and anti-myco and give it to everyone who has any Sx remaining after the 2-week Doxy IDSA "cure" and everyone who has any positive Bb specific band on WB.
I'll bet that, if they did that for 2 months after end of Sx and followed with anti-yeast & probiotics for 2 months after that, there would be a lot fewer people ending up looking for answers on Lymenet.
Oh wait, I forgot.... that's supposed to be more dangerous for creating resistant strains of bacteria than eating and drinking daily antibiotics in meat and dairy products sold en masse in our supermarkets, right?
They have to keep the animals free of disease so that they can make it to the store shelves, but screw us humans, WE might create resistant strains of bacteria. (Like repeatedly undertreating these TBD won't do that)
I really wish those MORONS in our government would start looking at the bigger picture and get their perspectives straightened out all ready!
Sorry for the rant, I'm not sure WHERE that came from.
I had read recently that it's believed that the purpose of the human appendix is to repopulate the intestinal bacterial colony when it's blighted. I've also read that the intestinal flora plays a key role in break down & absorption of nutrients AND immune response.
I've been wondering if that would mean it would be critically essential for people who've had appendectomies to take a probiotic supplement 2-3 hours after EACH dose of oral ABX to even hope to stand a fighting chance.
I think maybe I should start a thread to see if this could be a factor for anyone here.
Thanks again for the info! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
This lecture was recorded at the Lyme Symposium held at the University of New Haven on May 12, 2006.
The symposium was organized by Dr. E S and her Lyme Research Group at the University of New Haven. 77 minute DVD $15
No need to say more but I will
for 17 yrs told I have MS...found this LLMD and since abx treatment for 5 years brain MRIs stable -no new or any enhanced lesions
got lesions (no matter the cause) got MS Multiple Sclerosis-Multiple Hardening- Multiple scarring-Multiple spots of demylination
also the so-called positive MS spinal tap is hooey.
from a lymenet post: 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.
In 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.
There is more info like this linking MS to lyme. Funny thing is every "MSer" I've told to go to a llmd and get properly tested are lyme positive... MS is just a lable.
I do say I have Lyme induced MS to every new MD in my life...including my dentist.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
You should get her a copy of "Cure Unkown". Even if the Lyme is triggering MS symptoms she will be helped by aggressive treatment and her symptoms should abate. It's worth a try!!!
Posts: 144 | From Connecticut | Registered: Sep 2006
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