posted
My neuro says I have some kind of white matter disease. I show lesions of about nine. I am still considered a undiffer. connective tissue disease. I was wondering, I know lesions can show in the brain with lyme, but would they still be to the extent of nine lesions and how do they determine if they are lyme related or not.? I do see a lyme doc next Thursday but just curious in the meantime. Since I have the positive ANA could it just be autoimmune related? But Igenex shows me as a postive lyme test even though epitope test then came back negative. Just really confused as to which treatment or direction to go in. I know the MS lesion can mimic lyme but really how do they determine which it is? Is the two postive band tests on lyme test enough to indicate lyme or just a shot in the dark? Thanks
Posts: 25 | From south Florida | Registered: Feb 2010
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posted
I have two or three large lesions and about twenty small ones - you can see my other posts.
Two neuro consults both said that it is not MS and have seen this pattern before but as they don't know what causes it their is no treatment. One did mention lyme.
These lesions have affected my sensory, balance and thinking process.
I am now six weeks into iv antibiotics and it is tough. I have lots of nerve stuff going on and I don't know if the lesions are disapearing, wildcondor has a lot of information on this.
I am noticing an improvement in my ability of my hands to work with small items and the sensation in my legs are improving as some days it feels like I have shaved my legs and am sensitive to material. I have actually experienced the feeling of clean fresh sheets.
If the lesions were not being caused by lyme then I would not be showing any improvements, even though they may be small.
Check with wildcondor as I get so sick I don't get back here too much. Good luck to you.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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massman
Unregistered
posted
I was taught by a LLNP (Nurse Practitioner that MS is late stage lyme !
But...many docs + others, IME, will not admit they have been wrong !
IMO autoimmune is lyme. The body attacks itself for a reason. Anybody here remember the term stealth infections ? Infection occurs + we can't find what really causes it. Sound like lyme ?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, most often, "MS is late stage lyme !"
If you have lyme, lesions are likely from that. However, other chronic stealth infections could also play a part.
There is also a "MS" connection with Cpn - Chlamydia Pneumonia (see www.cpnhelp.org )
Celiac disease (gluten intolerance) and any of the eleven or so types of porphyria can also cause plaques in the brain so, if those are involved (as is often the case with lyme patients), it is vital to have good management.
. . . 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 and 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. . . .
====== - The full article is important to read. Best read by printing out since it can take a long time to read and rest periods will number at least ten. Having head support helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Define sclerosis: A thickening or hardening of a body part, as of an artery, especially from excessive formation of fibrous interstitial tissue. . . .
=========
MS is not a disease, in and of itself. I'm not saying that what is called MS is not devastating. It can be horrendous. Still, it is a description of what has happened to the brain / body. The name means multiple lesions. That's it. MS is just an umbrella term, like CFS and Fibromyalgia. The name does not get to the CAUSE of it.
There have been dozens of past threads here at LymeNet on this topic. Be sure to search the archives, in the subject line of the medical forum for "MS" and "Multiple+Sclerosis" - and "lesions" -------
[ 04-16-2010, 02:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Going back over your questions, you said you are considered to have some sort of connective tissue disease. LYME causes a full range of connective tissue problems.
You asked: "positive ANA could it just be autoimmune related?"
Many lyme patients have positive ANA. And, most often, autoimmune disorders are misdiagnosed when lyme - or other chronic stealth infections - are the underlying causal factor.
Many treatment for "autoimmune" disorders involve steroids. Steroids can be absolute disaster for those with stealth infections. Steroids can make lyme much worse and much harder to treat - perhaps even impossible to treat to remission stage.
Most neurologists know nothing about anything I've just posted. Most neurologist follow the IDSA thought that lyme is no big deal.
I see you said: " . . . I do see a lyme doc next Thursday . . ."
Are you absolutely certain that this "lyme doc" is ILADS-educated? Now, she or he may do things differently from the ILADS or Burrascano's guidelines - but they MUST have all that as background knowledge, along with all the other ILADS authors' works.
Also ask the LLMD to test for Cpn. Many lyme patients also have Cpn and it needs to be addressed if present.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said: " . . . But Igenex shows me as a postive lyme test even though epitope test then came back negative. " end quote.
Most labs don't do the test right. Most don't check all the bands.
Igenex is the best lab in the country for lyme testing. They test ALL the bands. Most labs don't even come close to the professional quality of Igenex.
This doctor was told he had ALS and that nothing more could be done. He tested positive for two tick-borne infections, got treatment and got his life back. Just another example of a neurological diagnosis similar to MS that had infection as the cause:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
**�Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I also was found to have lesions.
I was lucky enough to speak with the neuroradiologist Md whom read the test. I wanted to hear from him, his professional opinion. I never mentioned I had been diagnosed w/LD.
He told me a large percentage of the population have lesions and that some can be connected to "lyme disease"..I couldn't believe he said that and that many with lesions don't know they have them. Lesions can also be seen in those who have migraine headaches.
As I understand it, MS lesions can look similar and even be in the same places in the brain. But, ironically many MS patients are feeling better when they get on antibiotics such as minocycline or doxy..hmmm. I know of at least one LLMd that believes MS is untreated Lyme.
Also, in some Lyme patients (mostly who do IV) brain lesions can heal.
I also had a positive ANA. Then I was retested and it was negative. I was pretty concerned about this test meaning autoimmune disease, but literally every doctor from my primary to my LLMD said an ANA can be positive from ANY infection that causes inflammation.
One post I read here said her doctor told her an ANA can be positive from a splinter.
Better testing I hope your LLMD uses would be C3A and C4A test. They can decipher autoimmune from infection inflammation.
Keebler is absolutely correct. Many autoimmune diseases are treated with corticosteroids (i.e, cortisone, kenalog, etc.) and before I knew I had lyme I had Kenalog injections that nearly killed me it disseminated LD and dormant viruses like a grenade throughout my body and I have struggled horribly for 4 years. A friend of mine with LD did oral steroids and was told they would not hurt her, she ended up paralyzed by them for a very long time. Do not let any Md talk you into steroids, pills or injections..ever.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Although you have an Igenex postive lyme test, there are a few other things to consider regarding symptoms:
It is absolutely vital to avoid Aspartame and MSG (Google for all its name). Check labels on gums, mints, toothpastes and (gulp!) even medicines. Aspartame and MSG is neurotoxic.
Even a mere trace of either can trigger a dangerous cascade of events. See the book about this by Russell Blaylock, MD - something like "The Taste that Kills"
=====================
A GLUTEN-FREE DIET is often of great help to those with neurological conditions. Celiac can be an underlying complication either through genes or acquired by infection. Gluten can contribute to pain, brain fog, depression and even tremors and seizures.
Often, if from infection, after treatment, one can do okay with some gluten again. If genetic, that would be a different course of action, then.
Many LLMDs strongly suggest patients avoid gluten. But, first, it's helpful to see if one has genetic celiac. Not all doctors do the tests correctly. More here:
. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. . . .
. . . Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . .
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Well, I only had one small lesion but was told I had MS. Then was later told I had a positive ANA so probably lupus or scleroderma. My LLMD said not to worry about the ANA because lots of Lyme patients have positive ANA that goes away with treatment.
I'd say it's Lyme.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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please read whats below and what ever you do, DO NOT USE MS STEROID DRUGS !!!!!
written by Dr C of Missouri for the benefit of everyone. This was written around 2005.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
The significant antibodies or "Bands", in my opinion, are 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
Please note that "equivocal" is the same thing as "IND" or "indeterminate." -------------------------------------------------
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Dr. D**** is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis. Richard H******, M.D. said the same thing in his lecture, at that same conference.
Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot.
So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!
Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!
It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive.
I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.
For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to ``screen'' for borreliosis, even though it is a ``confirmatory'' test.
Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.
Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the Lyme bacteria, then there was a 97 percent chance they would feel better with antibiotics.
Consequently, I tell my patients not to worry if the laboratory interpretation is ``negative'' or ``equivocal,'' if they have antibodies that are significantly associated with Borrelia burgdorferi.
One thing doctors are taught in medical schools is to treat the patient, not the test result.
If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the `official' interpretation is negative or equivocal.
Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.
Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centers for Disease Control (CDC).
Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. In my opinion, surveillance criteria should not be used in day-to-day clinical medical practice.
Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC's surveillance criteria.
Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB).
In fact, the 31 kDa band is so tightly associated with Lyme borreliosis that a vaccine was made from that outer surface protein.
In other words, I believe that criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have Lyme borreliosis.
Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded.
(Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.)
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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posted
I had 4 lesions 12 years ago, now I have ~20, and a couple of them are pretty big. It's Lyme-induced MS. Of course, all the neurologists I've seen in the meantime just shrug off Lyme, but I've learned that all (read that: most) docs don't know diddly about Lyme!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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WildCondor
Unregistered
posted
WHite matter lesions can go away with Lyme treatment, if you do the treatment correctly.
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posted
I had lesions in the brain when I was first diagnosed, and I would surprised if I still had as many now. My brain and neuro symptoms have improved so much.
Posts: 975 | From California | Registered: Apr 2007
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posted
I had a spect scan and they said it was normal - go figure.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
If you have ever had any dental mercury amalgams...it could be the metal causing the lesions. This is my case. (mercury and lead)
Also mercury is linked to high ANA and lupus symptoms along with other autoimmune disorders. Depending on where the mercury is lodged, it disrupts many hormonal functions, can cause leaky gut, and harms kidney or liver pathways to detox.
Mercury disrupts many things...worth checking.
Lyme resides where mercury is hidden.
Posts: 1009 | From NJ | Registered: Aug 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I want to repeat one sentence of Keebler again:
There is also a "MS" connection with Cpn - Chlamydia Pneumonia (see www.cpnhelp.org )
Chlamydia pneumonia is also very very often a lyme co-infection.
Everybody needs to find out if they could also have cpn in addition to lyme. Especially all lyme patients with vasculitis, vibrations, red dots, elevated ANA, lung problems like air hunger.
The protocol is complicated but it can be easily combined with the lyme protocol,so it does not need so much additional time. cpnhelp.org
Posts: 1834 | From US | Registered: Oct 2008
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posted
I have lesions, Cpn, LD and all the neuro stuff and have for years. But IV antibiotics helped me by accident in 2003 when I was treated for septicemia.
Now I am dealing with a serious relapse because only recently did we learn what I really had and that it was the antibiotics that I needed long term.
I was told MS, Lupus, ALS, et al.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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