I also would listen to Dr. Natasha Cambell Mcgraw interview from the Dr. Mercola site who is a Neurologist in London who has done some good work that is very good to become aware off.
I adore Dr. Klinghardt but his specialties are Lyme and Autism, not Auto Immune.
I read the book by Stephen Lau on Myasthenia .. he began with the usual meds but got off of them and did holistic treatments. It's a good read regardless of which way you choose to go.
I'll let you know if I think of more... Best Thoughts to you!
posted
One thing I remembered. When Stephen Lau sited in his book that Myasthenia ( which is suppose to be rare) was found in elevated percentages after the war in returning troops.
I found that ODD as it's a rare disease, how could this be? They said it was from the stress which can worsen MG and malnutrition.
I did research and found a government record in 1947 which listed all the diseases and conditions for which the gov't pd compensation to soldiers.. MG was listed.
hmmmm so I searched on and found a Vet, Doctor Bishop who takes care of horses who develop MG and treats them primarily with herbs and only medicates them for specific events such as when they have to stand still for a long time for a blacksmith.
It's a long article but it's called Equine Shivers http://www.equineshivers.com/ I found this to be very interesting .
They are finding that our immunity is very connected to our gut health. That things like candida can root into our intestines and when they die off leave behind holes in the vili that can leak out larger particles into our blood stream which can be mistaken for invaders.
This is the work of Dr. Campbell McGraw the GAPS program. ( for the benefit of other readers LuluBelle) I am undiagnosed for MG as yet but have some symptoms which are mild and vague yet.
I have had Lyme multiple times in my life ( I'm 66) and had it several times in the 70's when we didn't know what it was so wasn't treated at that time.
I don't see how I couldn't have chronic Lyme but yet I don't seem to have any or many of those symptoms... I started out reading about Lyme and divereted to MG because of my weak legs when climbing stairs or hills...which revert to near normal after rest ( classic symptom).
My current testing is incomplete and neg so far... next week I shall hopefully know more.
Lyme drives Manganese down and MG is a disease of low Manganese. I've been supplementing lots of C about 8k units per day ( can cause loose stools)..
I take 15 mcg or mg of Manganese with each meal,
B complex B12 sublingual, E, D3, Glycine,
Glyutamine ( not glycogen as I'd first listed) with Probiotics, Zinc, Cordysepts, Bee Polen with Chorella and Wheat Grass..
Liquid Multi Vitamins, Liquid Cal Mag ( Note Magnesium is suppose to be not so good for MG) so I take a small dose of that and a separate Cal to up it and keep the Mag lower. Zinc is important.
I was doing the Buhner Cats Claw and Resvertrol as well but cut it out after a couple of months until I see what I'm dealing with for sure.
Oh also read Pyrolauria by Walter Last, it could be important. There is an excellent vid on you tube by Klinghardt about Pyrolauria as well and if you have it and figure it out and supplement you can improve your health.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LuluBelle,
Just remember that
1. lyme is a master at evading immune detection and until lyme is resolved, can CAUSE what some may think are autoimmune issues but it's not so simple because (among many other considerations)
2. the immune system can be "flipped" totally opposite of what those who know nothing about lyme would never guess (why a LL doctor is so important when talking about any "autoimmune" issues).
and probably at least a dozen other ways that doctors, authors, researchers who write about the immune system can really miss the mark regarding those who have lyme.
If you are looking for various ways to support (not boost or push) immune function, ask your LLMD or LL ND. It must be done in very specific ways. Lyme changes everything.
If you do not have a LLMD or LL ND, you might want to look at the books / articles in this set, there are some that deal with immune support - and with the specifics in mind that we require:
Herbal Safety considerations & reference books; etc.
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 with links to articles, books, methods . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Beamer,
Many here have vision, vertigo and attention issues that prevent reading large blocks of solid text as you posted. Many have nystagmus (eyes spasm) so large blocks can be a swirling sea of grey stuff) leaning them right off their chair.
Finished paragraphs of 3-4 lines is about the max for many, with a space break so the eyes can "breathe" and track. That's about 5-6 lines in the edit mode.
Each point does well with a new paragraph . . . that's space for the brain to shift as well.
You'll have more be able read (and reply) if you could go into the edit function (tiny paper & pencil) and add in some space breaks. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thanks for that reminder, I'm sorry it was late and I didn't stop to think which is common for me. I had a head injury as a child which effected my short term memory, long before I was exposed to Lyme.
I never know which it is that keeps my short term memory so poor. I write things down but it doesn't help because I can't remember where they are written.
Your info to Lulubelle is helpful to me as well. I got lost in my search for what my problem could be.
I began searching Lyme intently for 2 months reading almost 8 hours a day. I could not relate with many of the symptoms. Exhausted I searched elsewhere and when I read MG I related with that more.
I do not have some of those symptoms for sure yet so that is unclear as yet. I have weak legs which do resolve with rest. ( classic MG)
I was having some upper back muscle issues which were coming and going then here and now seem to have somewhat abated with the warmer weather. Unclear..
I have some blurry vision issues that come and go, and I'm going back to the eye doctor last week who'd seen something on a test and wanted to see me again.
I'm awaiting an antibody test for MG and I have a muscle test scheduled next week.
I am amazed by the depth at which the people here are pursuing Lyme. This is a serious group. I don't know what to think at present.
I keep reading that Lyme can masquerade as many neurologic diseases, but I have not been able to find many people who say they were diagnosed with them and found out they had Lyme.
I'm in Mass and had looked over the LLMD list . There was one Neurologist I tried to contact but her number was no longer working.
I wrote to that Vet I spoke of who treated her horses for both Lyme and MG. She gave me the name of the company she uses to get herbs to treat Lyme. She says it works great. She told me that most of her MG horses have Bartonella.
Thanks for your guidance.
Best Thoughts, Betty
Posts: 12 | From MA | Registered: Jul 2014
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-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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I'm alcohol, caffeine, sugar and gluten free for over a month and I'm now making bone broth and going to learn how to ferment food at home as well.
Part of the problem is that many of us have unwittingly been eating GMO's unknowingly for decades. I am feeling much better , so much so I'm confused.
I see PANS/ PANDAS often but don't know what it means..
Thanks for your comment!
Best Thoughts, Betty
The toxins sprayed on our food, GMO or not, can't be good. Even conventional grains and legumes are sprayed with glyphosate to decrease drying time. Food doesn't need to be GMO to be toxic. If it doesn't say organic, it's not.
PANS - Pediatric Autoimmune Neuropsychiatric Syndrome - An autoimmune brain reaction caused by various infectious triggers. Our daughter's was caused by a Bartonella hensalae infection.
PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections - An autoimmune brain reaction caused by strep infection.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Rowingmom, You are one informed mom...I had no idea that they would use Glyphosate on conventional grains.. I'm an activist against MonSATAN as I call them. Could you provide me with a link to substantiate that fact? I'd love to have it if you can find it.
I'm going to look more into that Rob Wolf link more. I looked at it quickly but want to find more time for it. Thank you so much, I'm so glad your daughter is doing so much better !
Posts: 12 | From MA | Registered: Jul 2014
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I should have provided the link to Terry Wahls as well. She has a good autoimmune protocol and is running clinical trials on the effects of intensive nutrition (paleo autoimmune) on MS symptoms.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
My Dad had Myasthenia Gravis. I also think he had Lyme and Celiac Disease (he was never tested for either one, but had symptoms consistent with both, and I have one Celiac gene...).
He discovered that his symptoms of MG were a lot less severe when he was able to take Manganese.
His Sister had Multiple Sclerosis (severe, progressive). They were both born & raised in rural Michigan...a known Lyme-endemic area...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
In my opinion, autoimmune is an immune system that has been tricked into making a mistake.
Just as some pathogens can "trick" our immune system into going in a direction
***for their own benefit***...
We can do the same...trick our immune system so it does NOT respond:
The following link also mentions other "autoimmune" diseases like MS.
The SARS virus binds to a receptor in the renin-angiotensin system. To clear the infection, they gave large amounts of angiotensin converting enzyme-2, the molecule whose
***function was***
blocked by the virus.
I believe Bb interferes with the amount of / delivery of and ***FUNCTION of*** ubiquinone which OUR mitochondria (powerhouses) use (need) and convert to the anti-oxidant, ubiquinol.
[ 07-11-2014, 01:58 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Thank you so much for all of this fantastic input. I am so grateful. I am saving all of these links and planning to implement more and more. I'd begun bone broth but my friend told me that they are finding it can have high levels of lead! So I have that on hold. Here is a link she gave me that I found of great interest... After all we are mostly salt water, but much of our diet has polluted our personal oceans!
posted
As I'm following all things MG and looking things up everyday... It never ceases to amaze me how when you "research" online, you can come up with the same links over and over... and then... you read something you've never seen before... at least I hadn't... check this out: http://www.sciencedaily.com/releases/2012/10/121001095041.htm oh and don't let that crappy ad for digestacure ( which sounds like really crap), that is auto placed confuse you ... this seems like a real report.
Posts: 12 | From MA | Registered: Jul 2014
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Link above from Beamer talks about the gene therapy for MG.
I think maybe a virus exposure (similar to West Nile virus transmitted by a mosquito - 2013 finding research)can trigger a gene(s) activation.
We have genes to protect us from cancer. It is very possible exposure to a pathogen can disarm/inactivate those genes (which are proteins too)
perhaps
because of a similarity of proteins in a pathogen and our own gene-proteins.
We have proteins/genes to protect us from AD too (as well as proteins that increase our RISK)...if they are altered by "environmental" conditions...
Caution if you have MG...do NOT take supplemental Mg!!! (Which is quite ...well, opposite...for those with lyme.)
"Typically, increased MG symptoms
occur with parenteral magnesium administration, but on occasion is seen with oral use.
Therefore, parenteral Mg++ administration should be avoided and oral Mg++ preparations used with caution in patients with known junctional disease (myasthenia gravis, Lambert Eaton syndrome, botulism, etc.)."
Now this is interesting - VERY!!! (same link):
"Magnesium interferes with *neuro muscular transmission* by
posted
I re read because I'd not felt this piece was really talking about an MG gene... they talk about altering things with a missile approach and that there can be a genetic predisposition, but they don't actually say MG gene.
I do know in some cases that there can be congenital MG which would suggest a genetic mutation perhaps...
My personal theory is that Lyme works to create the conditions which can precipitate MG and other neurological diseases. I also think that careful and very seriously applied nutrition can help a person to at least lessen symptoms in some cases.
As it appears with so many different factors within MG i.e. different antibodies, thymus conditions etc... perhaps some cases are more easily affected than others.
I don't know my status yet and think there is a chance I don't have MG, but something is causing my leg weakness and I want to suspect LYME but I just can't relate with enough of the long list of chronic infections ... I basically feel too good with the exception of these legs that weaken mostly with prolonged demand not on flat ground but on stairs or hills.
I will say since I've started serious supplementation of minerals and manganese, many other things that I believe I have more strength, even on hot days... but it's hard to say in a few weeks... if MG it's a funny disease with rises and falls. thanks for your input... !
"By outlining how prolonged fasting cycles — periods of no food for two to four days at a time over the course of six months — kill older and damaged immune cells and generate new ones, the research also has implications for chemotherapy tolerance and for those with a wide range of immune system deficiencies, including autoimmunity disorders".
I practice IF with an eating window of 8 hours per day, but this is a bit more stringent.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
this is very interesting and supports that Gut health is vital in fighting disease. The work of Dr. Natasha Cambell MacGraw ( the Gaps protocal) is very interesting. She supports lots of fermented foods. I think the time of everyone depending on pharmaceuticals alone is a setting sun. The body needs proper nourishment and we've gotten so far off track depending on pills for everything that we don't even know what creates it anymore. 85% of all food stuffs on the market contain offending ingredients. Thanks for these great links and articles.
Posts: 12 | From MA | Registered: Jul 2014
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Gut health...uhm...it takes Tritec to rid Bb (all forms of Bb) IF Bb is in the gut (in the cells that line the gut). Old research.
Tritec only works in the gut.
Look at berberine (Glycox - Amazon) as it relates to IBS/Crohn's.
Re: gene therapy...predisposition plays a part in MS:
Autoimmune myasthenia gravis (MG) is a multifactorial disease,
Some people with bipolar have antibodies to GAD65/GAD67 which is an enzyme that is needed to convert glutamate (accelerator) to GABA (brake).
We make antibodies in RESPONSE to an antigen = protein likely present in a virus/bacteria/fungus.
The antibody that persons make in response to Bb's OspB isn't a "perfect fit". It is damaged. Supposedly Mg (and Ca) restores the health of that antibody, but what if the body "remembers" the wrong response?
Mg is anti-inflammatory, anti-histamine and most importantly...inhibits HMG CoA reductase (like statin drugs). Bb follows the "cholesterol pathway" to build its cell walls.
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