While her work is not about any infection connection, it is very valuable regarding nutritional protection & repair of nerves.
Of course, for those with a stealth infection, that would not be enough but - without such a strong nutrient support system - treatment for any infection may not work as well.
And she did more than just nutritional support, she had antibiotic therapy, too. A key consideration. But the use of minocycline, in her case, was omitted from her book. It focused just on nutrition (which can be a huge - huge - mistake for those who think that's all there is to it).
posted
There's a lot of us who had a MS diagnosis before lyme was found.
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Keebler
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posted
- It was suspected for me, too. But I declined the spinal tap (lumbar puncture) they wanted to diagnose it "for sure" -- but I knew that I had lyme and they just did not want to acknowledge that.
A "spinal tap" or "lumbar puncture" is not a good test for lyme. It's invasive, expensive, can be painful and can cause some harsh after-effects.
And, when it comes back negative (which it will in the huge majority of those with lyme) it can be used to prevent access to any treatment.
-----------------------------------------
Steroids can also make lyme or other stealth infections MUCH, MUCH worse.
I mention these two key points as those are often involved with a "MS" diagnosis. Best to consult a LLMD who has a wide range of knowledge about "MS" like conditions and all the possible stealth infections -- or other considerations.
Heavy Metals and Parasites also require consideration.
it is best to avoid these three particular amino acids (other than in normal doses from food or maybe in a balanced formula with other amino acids & other nutrients, but not above the average daily dose.
Even at that, some people need to avoid excess foods that contain one or both of those as they can be too stimulating for the brain when it's already overstimulated from neuro-toxicity issues.
with Reference to the Related Compound Glutamate by Subhuti Dharmananda, Ph.D.
[Just beyond half-way down, see the section:]
Excerpts:
. . . GLUTAMATE IN NEUROLOGICAL DISEASES . . .
. . . In some neurological diseases, it is found that glutamate levels in the central nervous system become unusually high at sites of pathology.
This can occur, for example, if the rate of degradation of glutamate is slowed by an impairment of the enzymes that are involved.
Also, glutamate is excreted by immune cells that take part in inflammatory processes; the result is high local concentrations at the neurons in progressive neurological diseases such as MS and ALS. . . .
. . . The excess glutamate at the neuron acts as a poison; at high enough levels, the nerves exposed to glutamate can be completely and permanently damaged, so that they are no longer capable of transmitting signals.
Thus, while glutamate is a major component of the body, and an essential part of the nervous system, high levels localized in the nerve cells can be quite toxic . . . .
. . . Laboratory research has revealed that in the progressive, debilitating disease ALS, one of the many processes involved in disease progression appears to be damage of nerve cells by accumulation of glutamate.
In relation to multiple sclerosis, changes in control of glutamate homeostasis in the central nervous system might contribute to demyelination of the white matter of the brain (19).
[poster's interjection: lyme also causes demyelination, what that is:
Based on preliminary animal studies, it has been suggested that glutamate dumped by immune cells can exacerbate the nerve damage (20). . . .
. . . The role of glutamate in neurological disorders has raised the question as to whether persons with such neurological diseases might have to be careful
not to get high levels of either glutamine or glutamate via their diet and/or by taking glutamine supplements. . . .
Food reactions can trigger epileptic seizures. The main culprits are the following foods that are rich in glutamate and aspartate, two very excitatory amino acids:
------ See list at link above -------
. . . and the entire article as it may not seem like it by the title as not all lyme patients experience seizures.
However, the content relates very much so to the neuro-excitatory problems seen so very often in lyme disease & heavy metal toxicity. -
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Keebler
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posted
- Certain food or beverage additives can also cause symptoms that can mimic or exacerbate "MS" and other neurological conditions.
I would hope your friend has been advised to avoid even a trace of ANY food additive, especially artificial sweeteners.
Stevia, from a plant, is okay as long as there is nothing added. Truvia, a brand that says it is Stevia, has additives.
SweetLeaf Stevia Clear works for me. Although it contains "natural flavors" I researched that and feel confident that is not synthetic but is from a touch of herb to provide freshness.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MannaMe
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posted
She has severe allergies and is on a very restricted diet already. Only REAL food!
She's been working with an herbalist as she can't handle ABX. We never talked about the possibility of it being Lyme. I'll have to talk with her about it.
Posts: 2249 | From USA | Registered: Aug 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- You mention that she is working with an herbalist but (since she never mentioned it, perhaps) lyme has never been questioned. If so, I'm nearly certain that the herbalist is not ILADS educated nor LL if it has not even been mentioned.
IMO, every person who has any neurological diagnosis should be assessed for the full range of tick-borne disease (TBD) and other stealth infections, heavy metals, mold issues, and parasites.
It may be that the intolerance to antibiotics is a herxheimer reaction due to the presence of lyme.
For emphasis on this approach, it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs also incorporate certain antibiotics, or works in conjunction with a patient's LLMD who attends to that aspect.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both) -
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Keebler
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Examining the link between ALS and Neuroborreliosos.
Actually, ALS is not lyme, to be clear.
But sometimes (too often, actually), ALS can be MISdiagnosed when it's really lyme.
Lyme can cause what may appear to be ALS symptoms. And other chronic stealth infections may also be at the root of any neurological / muscle / motor symptoms. -
[ 02-26-2015, 05:11 PM: Message edited by: Keebler ]
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canefan17
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Member # 22149
posted
^ Bump
They examine Borrelia only. Big mistake. Bartonella and Mycoplasma probably play a huge role in ALS.
Also - the reason abxs may cause faster deterioration of ALS patients is the abxs they are using (Minocycline/Doxycycline) may be hitting/stopping Borrelia and giving Bart (the real culprit?) the upperhand.
Just my theory
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Keebler
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posted
- Also, without good liver support, things can get worse.
Steroids are often used for "MS" and steroids can cause disaster for those with lyme or other undiagnosed infections.
posted
My LLMD explains it like this: You can have Lyme Disease, you can have MS and/or you can have Lyme that looks like MS. I have MS and was told years ago that it wasn't Lyme based on one crappy test. fast-forward to 2007 and I find out that IT IS actually Lyme. And BTW - I've never had, nor will I ever have, a lumbar puncture, as much as my neurologist wants me to!
Do some searches on here Lyme v. MS or Lyme or MS, etc., and you will find a bunch of us in the same boat. Some people believe that all MS is actually Lyme.
Yes, your friend could very possibly have 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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MannaMe
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posted
My friend is planning to order the test for Lyme from Igenex. She thought Lyme sounded better than MS. (She knows Lyme is no picnic either) Hopefully she can find a doctor nearby who will do the test.
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Keebler
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posted
- LOW DOSE NALTREXONE (LDN)
has been very helpful for many with neuroborreliosis to help support their immune system -
- to calm the "pseudo" autoimmunity and the various other ways the immune system can be both worn out and also seemingly overactive (but not effective enough).
There are many other threads on that topic.
The website for Scott the Better Health Guy would have good details, too.
Many (maybe most) LLMDs are very familiar with this.
Starting slowly - very slowly - is required.
1.5 (one.five) mg. a day . . . then gradually increase to 4.5 (four.five). Any LLMD who knows about this will be able to guide.
Reactions can include sleep disturbance at first but may get past that.
---------------------
MEDICAL MUSHROOMS are also an excellent immune support. Best guided ONLY by a LL doctor and LL NDs are most familiar with this avenue. -
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MannaMe
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posted
Did those of you with an MS diagnosis, have "classic" MS symptoms?
Did the MS symptoms go away with Lyme treatment?
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Judie
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posted
"My friend is planning to order the test for Lyme from Igenex. She thought Lyme sounded better than MS. (She knows Lyme is no picnic either) Hopefully she can find a doctor nearby who will do the test. "
Hopefully she can take antibiotics before the test. A lot of times, the body just stops making antibodies for Lyme even though you still have it. Antibiotics helps the body produce them again, so someone can test negative, take antibiotics, then test positive afterwards.
If you do a search for "antibiotic challenge for Lyme testing" on google, info will come up.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- MannaMe,
Indeed, for those with lyme or Cpn, proper treatment with an ILADS-educated LLMD &/or LL ND (or a Cpn doctor) that fully addresses from all aspects and for long enough (could be several years) the underlying infections -
- along with excellent nutrient support and wise "self-care" - has brought varying stages of remission.
There are many successes. -
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randibear
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posted
i knew a woman from work, very nice and she had ms.
i kept discussing lyme but she was adamant that the doctors knew more than i did. absolutely refused to believe anything else. she was often either on crutches or in a wheelchair.
but yes, i think it definitely could.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lpkayak
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posted
randi-ive been thru that exact thing more than once. i feel really bad cuz the neighbors across the street that help me so much are dealing with ms...he is doing well on a shot...but it just seems it would make sense to at least give abx a try...i dont know. but i offered and they decided no. unless thay are researching on their own. i dont really know.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Excellent article, absolutely excellent. Thanks so much for that find, TuTu.
Although coming from Switzerland through our great world wide web, this link might disappear in the future.
Mostly, I've seen comprehensive herbal articles disappear due to FDA rulings to keep us all in the dark. However, it's not uncommon for some web links to disappear simply when a site makes basic functional or format changes.
This is an article that may be important for a very long time and it's so essential to our education.
For such articles, it's good idea to always copy & paste to one's personal computer file for safe keeping and reference.
Discusses findings of Alan B. MacDonald M.D., a lyme researcher & pathologist and
Tom Grier, MS, a microbiologist and Borrelia expert.
-- Now, just add the text and save to your research file folder. Share, the link too, of course. This holds copyright, so be mindful of that. -
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My sister was diagnosed with MS last year and I've suggested that maybe she should get tested for Lyme, first by her PCP then through Igenex if that test came up negative.
She doesn't want to hear it. Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
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Topic: ALS and Lyme -
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GiGi
Frequent Contributor (5K+ posts)
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posted
All patients who Dr. K. has seen and sees that come to him with an MS diagnosis tested positive for Lyme. But it is never just Lyme.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Keebler
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posted
- Emphasizing GiGi's post, it's so true. It is never just lyme. Lyme never travels alone. Still, learning more about lyme, itself:
He is a top researcher, ILADS member / presenter with an excellent reputation. Although NOT a treating doctor, ALL good LLMDs and LL NDs should know his work.
Dr. Alan MacDonald: Pathologist, Lyme Disease Expert
The Biology of Lyme Disease: An Expert's Perspective - July 2013
Please take a look at this study for MS and Lyme which you may want to participate in. It is being run by Dr Alan Macdonald and looks for the DNA of borrelia burgdorferi (lyme bacteria) in CSF.
Some NEW LINKS over here, of great importance to this topic. Especially, scroll down to Phoiph's post from Switzerland research. -
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Annie C
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posted
My first MRI dx MS/Lyme my answer is Huh?
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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Keebler
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posted
- Annie,
the language in the written report was likely something like: " . . . identification of white lesions (or whatever term they may use) . . . indicative (or as seen in cases) of possible MS / lyme . . . ."
Whoever was the radiologist reading the MRI scan and writing the report was likely more open minded than most who would never put lyme in the report even if the "computer program" that may "check" their MRI images and run possibilities past them included it.
Some radiologists are not even in the same city or same country when reading them. They are contracted out - not always but often.
It would never diagnose anything but it says it sees "this" as in "that condition" and then the doctor who ordered the MRI just takes that into account when making an "official diagnosis."
That MS/Lyme were together -- they are saying could be either. Not likely they quite get it yet that it's likely all the same thing. But that is where a LLMD can have another good tool upon which to base the treatment protocol.
For what it's worth, the white lesions so often the MRI indicator of something going on with MS/Lyme -- or even fuzzy looking patches -- well, with good treatment for lyme, et.al., they often disappear on repeated MRIs.
More often an MRI will say something like: some small white lesions but "we don't care a hoot about those or the patient" ... only in more palatable terms:
"inconsequential" or "artifact" (just a bit of dust on the screen) . . . That's what mine said. They admitted there were lesions but they were not going to give those any kind of attention at all.
The neurologist who ordered that MRI, though, was very anti-lyme in the deepest definition. He would never work with any radiologist who might find hints of lyme. -
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Keebler
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posted
- Tincup (in another thread) just posted this:
BTW- a number of our volunteer patient advocates and support group leaders were originally misdiagnosed with MS only to later find out it was Lyme disease. One of them speaks a little on the issue at the first link below.
posted
That happened to me also, use it to your advantage and get IVIG treatments covered under the MS diagnoses.
Posts: 315 | From USA | Registered: May 2005
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Keebler
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posted
- Anytime there is something that might help the underlying cause and it might be covered by insurance, that's great. IVIG has been very helpful for some with lyme, very helpful actually.
However, often some "MS" drugs can cause damage to those with lyme - mostly by not addressing the cause &/or suppressing immune function.
Need we really wonder why "MS" is the more readily diagnosed term and the frequent cause lyme / other TBD / other chronic stealth infection is not just ignored but anyone who brings up the infection factor is usually just clobbered by doctors?
The same might be said for other "umbrella diagnoses" or conditions named as diseases which are actually symptoms of something else less profitable?
my thoughts above. Regarding MS drugs, be very glad that we are in tune with what's beneath a disease name. While lyme / TBD treatment is not cheap, at least it's addressing the cause and there is an endpoint to treatment in sight.
Not so with "MS" drugs required for life without getting to the cause when lyme or chronic stealth infection is involved.
- By The EDITORIAL BOARD - The New York Times - May 5, 2015
Excerpt:
. . . Drugs used to treat multiple sclerosis are of particular concern. A recent study by researchers in Oregon found that first-generation drugs that came on the market in the 1990s ranged in price from $8,000 to $11,000 a year.
Prices for those drugs rose even though new drugs entered the market, theoretically providing competition. One drug that first cost $8,700 now costs $62,400 a year.
There are no multiple sclerosis drugs available in the United States with a list price below $50,000 a year, the researchers say, which is two to three times more than the list prices in Canada, Australia or Britain. . . .
[Full article at link above] -
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Keebler
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Overview - The diagnoses listed below can cause neurologic symptoms that are similar to those caused by multiple sclerosis (MS).
In order to confirm the diagnosis of MS, your doctor must be able to rule out other possible diagnoses that could explain the symptoms you are experiencing.
Some of these diagnoses are easy to rule out with a simple blood test (e.g. vitamin B12 deficiency), while others, such as sarcoidosis, may require a biopsy.
Some are much rarer than others.
It’s important to work with a physician who is familiar with these conditions in order to arrive at a correct diagnosis as quickly as possible — and begin the appropriate treatment — whether you have MS or not.
* Infections of the central nervous system (CNS)
Lyme disease — An infection caused by the Borrelia burgdorferi organism, which is transmitted to humans by a deer tick. . . .
[This excellent article continues to list several conditions within EACH category below]
Infections of the central nervous system (CNS);
Inflammatory disorders of the CNS;
Genetic Disorders;
Brain Tumors;
Damage in the brain or spinal cord;
Other non-MS demyelinating disorders -
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Tracy9
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posted
I just had an MRI that I scoffed at but it turned out to be indicative of MS. I haven't even said anything to anyone yet, I feel so defeated. I already have a Myasthenia Gravis diagnosis and have been in treatment for it for over 6 years. The neuro I just saw wanted to rule out MS which I thought was ridiculous. My MRI showed multiple lesions that I know were not there before. Sigh.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Keebler
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posted
- Tracy,
Sorry to hear of your news. Be sure to read through all the links above as, an MRI that shows what you report is entirely in line with some who has lyme. But most neurologists do not know that, many don't want to know that as they make lots of money from the "MS" diagnosis and treatment.
If you still have an LLMD, be sure to send the MRI report to them - or to a new LLMD.
An MRI cannot diagnosis the CAUSE of such lesions. That they are seen in "MS" does not mean only in "MS" - in fact, very often, they point to lyme or other causes. Links above explain this better.
Many who have had such legions show in an MRI, with assertive and direct treatment for lyme / other TBD, have seen the lesions either diminish or resolve with treatment.
I know you've spent years fighting lyme and it's understandably very discouraging. Still, there may be some other ways to approach this, starting with a new assessment with the new information. There may be other chronic stealth infections or inflammatory issues.
A neurologist who does not understand tick borne infections won't know enough to consider it all.
A good ILADS educated LLMD can help determine what your MRI might mean in light of a full range of other considerations, including possible lyme / TBD that still needs to be managed in some other way. -
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Mg sounds like a misdx too...hope your not on chemo still? Consider bvt it worked for pat wagner and me
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- I was looking at old files and this seems good to highlight now even if a few years back. :
posted by: Sonatina, Member # 45056] 10 December, 2014
FYI: there is a physician (pathologist) named Gabriel Steiner, MD, who studied MS extensively in the 1940's and 50's and published several papers in which he explained why he believed MS is a spirochetal infection.
He thought it was caused by a specific borrelia, a different one from the one associated with Lyme, which he named borrelia myelopthora due to its affinity for myelin.
Unfortunately his work has been forgotten today, but I have read his papers and I suspect he was right.
Especially in light of things we now know about borrelia that were not known when he was publishing. (He did not have DNA tests for example).
Dr. Steiner had an interesting background because before he studied MS, he studied syphilis. Hence he had a great deal of knowledge and expertise with spirochetal infections. He was a brilliant man.
This is not to ignore the "autoimmune" component of MS... but it may be that it is REACTIVE to an infection rather than the primary cause.
If you compare Lyme and MS symptoms, you will easily see that although there are differences, there are some striking similarities ... such as symptoms coming on in "episodes" with intervening latent periods, which is a characteristic of spirochetal infections.
If you have access to a medical library, I suggest you read Dr. Steiner's papers. Worth every minute of your time.
Then take a look at some of the current pictures published by Judith Miklossy and others of Lyme in its non-spirochetal, round forms.
STEINER G. Acute plaques in multiple sclerosis, their pathogenetic significance and the role of spirochetes as etiological factor. J Neuropathol Exp Neurol. 1952 Oct;11(4):343-72.
Also consider whether yeast might be a part of the picture... it can be an additional factor after a long period on antibiotics, even though your treatment was some time ago.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice.
[end of post from 10 December, 2014 by Sonatina, Member # 45056] -
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Bartenderbonnie
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posted
I recently saw a Neuro Optometrist that specializes in MS.
It was in a new state-of-the-art medical complex that won the engineers an award for design. It was beautiful. Everything in one place, infusion center, blood draws and laboratory, MS Neuro's, MS Pediatric's (never knew children get MS), Auto-Immune Doctors, all MS specialists.
I thought to myself, why can't there be Lyme centers exactly like this?
Then it dawned on me while in the waiting room. MS IS LYME! Only these fine professionals don't realize it.
There were pamphlets on all things MS;
Cooling jackets (MS patients can't regulate their temperture) (Lyme and co-infections can't either) Walkers for gait problems IV materials for MS infusions. Colored eye glasses for vision problems Diet and cookbooks (no gluten/sugar) Transportation options Insurance advisors And get this. . . there are 6 MS support groups in my area compared to 1 Lyme support group.
Our state senator recently acquired funds to open a commission to determine why this area has such HIGH MS rates. Maybe someone will finally connect the dots...........
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Someone dear close to me had an MS diagnosis ( before becoming his own advocate and finding out it was lyme) God knows what would have happened to him if he gave into that MS diagnosis and didn't do further research. Long story. However, 10+ yrs later he's treated the Lyme and gotten his life back.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Bartenderbonnie
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Member # 49177
posted
Just watched Dr P's recent presentation. You should watch the whole thing but if you're just interested in MS, go to the 45.50 mark on the video;
Researchers found spiroketes in MS patients dating back over 100 years ago.
Monkeys injected with brain and spinal fluids from MS patients demonstrated spiroketes in their spinal cord.
Researchers have found B.burgdoferi persister cells in ALL MS patients.
Outcomes with antibiotics are very, very good in relapsing and remitting MS. Not so good with primary or progressive MS.
Amyloid plaques is a way your body defends againest the infection from spreading in the brain.
Posts: 2977 | From Florida | Registered: Nov 2016
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