So it seems that the diet only was not enough, there was a lot of supplements and minocycline.
I wonder if she still takes mino.
Canga
Posted by Keebler (Member # 12673) on :
- Thanks for that link. I had really wondered as I had not seen anything about any antibiotics until now. This could explain a lot.
She had quite a well rounded protocol and plan, and I do suspect that the inclusion of minocycline was a pivotol key. I think everything helped but it's important to note the mino.
At first, I could not find it. Now I see it
in section "Case Presentation" 1st paragraph:
Excerpt:
. . . Her MS medications included
B complex vitamins, carnitine, lipoic acid,
gabapentin, bupropion, baclofen,
modafanil, mycophenolate, tolterodine, and
minocycline. . . . (end excerpt).
[Other supplements & foods are listed in a couple different sections of the article.]
-------------
FWIW: Neither "minocycline" nor "antibiotic" appear in the index of her book.
I've not read the whole book but have read most of it. I have not noticed the mention of minocycline. My eyes may have missed it but with it not in the index, it would seem to be absent from the book.
And she did not mention it in her TED TALKS.
This article you linked is from 2009.
2nd edition of her book is dated 2010. While minocycline seems missing, there is no section I can see where she discusses ANY actual medications. The book's focus is on food and supplements.
TED TALK was recorded 11-11-11.
I wonder why the exclusion of minocycline in book and TED TALK. Although she did not list medication or supplements, really, in the talk. It was mostly about the diet - and time was limiited.
Still, I feel a bit deceived by the omission of minocycline to the book and the TED TALK.
Considering what we here at this board are looking at, it really matters, knowing this. Everything else she says is of great value but I'm not sure even she may see the importance of minocycline. -
[ 02-05-2013, 03:49 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Explaining the rationale behind supplements & foods, see Last paragraph, section "Discussion":
Blocking glutamate synthesis with taurine, glutathione, and N acetyl cysteine lowers excito-toxicity and has reversed axonal loss and disability in mice [11].
Antioxidants from food and nutritional supplements have been shown to inhibit T cell migration [12], block excito-toxicity [13], decrease oxidative stress [14] in both experimental autoimmune encephalitis and in multiple sclerosis patients. -
Posted by Keebler (Member # 12673) on :
- canga,
This is such an important find that I just added your thread over here so it's in with a whole set of Wahls links:
Topic: Doctor with MS recovers: shares nutrients & pivotal diet
Focus: "Minding My Mitochondria" by Terry Wahls, MD -
Posted by canga (Member # 37571) on :
Keebler,
I find this too extremely important. I tried to play with diet ONLY but no matter what, my symptoms returned, I think 10-14 days what max what I could stand.
When I added just a tiny amount of colloidal silver, everything suddenly returned to normal state.
The only way I could somehow stand it was when leaving out all meat, sat fat, only some fish and lots of omega3s.
I think this explains why some people on thisisms.com report that they keep progressing on this diet. And it also explains the complains from Jelinek/Swank MS diet communities regarding paleo and saturated fats. If they don't have antiinflammatory/antibacterial mino, then saturated fat is like fuel for their inflammation.
So you can not compare Wahls approach to Jelinek/Swank's MS diets because Wahls is NOT a diet only!!!
Now Wahls seems somehow like Whaldon/Stratton + a nice list of natural supplements, exercices, meditation, detox, etc.
The question is: did she find something NEW or is this basically what everyone can find here or on cpnhelp.org or similar sites?
Canga
Posted by Keebler (Member # 12673) on :
- Canga, Good questions but I'm folding up shop.
The short answer is that, yes, here and at cpnhelp.org the focus is multi-faceted:
antimicrobials,
nutrition from food & support supplements, &
wise movement that does not tax, with wise self-care.
I feel I missed the boat as that article you posted was Published online 2009 August 10. It's been around for over 3 years now.
Can't believe I didn't think to look beyond her video or her book. Oy, vey. I though I searched her name . . . but maybe forgot and though her book would cover everything (but it did not).
Thanks, again, for finding that.
Too late, even in my time zone. Hope neighbors have stopped snoring so I can clock some ZZZZs. -
Posted by canga (Member # 37571) on :
I thought about this for some days and now I would say there is one thing that TW clearly showed: synergy.
Simultaneously applying different methods that are good for brain you can fight/overcome/manage MS and smiliar diseases.
But I doubt she showed that paleo diet alone is enough to achieve such results.
I also doubt the neurologists will buy this because the approach is too complicated. They'd love to prescribe 1-2 drugs and see the patient in 6 months.
Canga
Posted by canga (Member # 37571) on :
And BTW I kind of tried to falsify Marshall's autoimmune theory assuming that diet alone could cure MS. Instead I falsified the diet approach
I wonder if this is enough for me to get on the MP bandwagon. From what I see here it gives extreme results for people: from healing through so-so to loosing almost everything...
Canga
Posted by Keebler (Member # 12673) on :
- [My replies are written so as to include anyone new to all this, too. And please read in just a very nice "voice" - there is nothing but just adding my thoughts here, neutral voice. Just to be sure no one can misinterpret and just pick up Wahls book alone.]
Canga,
I've very grateful for your having brought to attention the fact that Wahls' success was much more intricate than just what is presented in the book and the use of minocycline may have been pivotal.
It may be that I just have a different intrepretation but I don't consider Walhs' diet suggestions as Paleo. She mentions on two pages of her book, the Paleo diet and that she started there. But then she shifted.
Wahls suggests more of a Mediterranean Diet, in my interpretation. with a balance of raw fruits, veggies, some cooked veggies and cooked meats. Other than avoiding dairy and gluten, all real foods are allowed.
I think her nutrition program is excellent and it's important that we all get so many veggies as she did. It's just that I'm confused and also miffed that some key facts were omitted, mostly the use of minocycline.
To be clear, Wahls' never mentioned lyme. She had not been diagnosed with it. It's just that those of us here - with lyme - know that many with previous diagnosis of MS have been erroneously dx with that. Cpn and other stealth infections can be a cause of MS but, to my knowledge, Wahls' has never written about any infection connection.
So, I thought "well, maybe in her case just food, supplements and therapy" were enough for some reason. Fabulous.
Then when you posted the detail about other Rx uses, especially minocycline, well, THAT is a huge key.
Still, we don't know if she had lyme, Cpn or other but, if so, the minocycline may have been an integral ingredient.
But those of use here at this forum know. We have lyme (and maybe much more).
For our purposes . . .
Nutrition alone (including great support supplements) will not cure lyme but without an exemplarary diet, the chance of success is greatly diminished. For that, her book is great advice - as far at that part goes.
"Now Wahls seems somehow like Whaldon/Stratton + a nice list of natural supplements, exercices, meditation, detox, etc." (end quote)
Again, my interpretation but I would not go so far as to say that Walhs is at all like Wheldon / Stratton - the Cpn protocols.
Wheldon / Stratton (two slightly different protocols although they are on the same page) address Cpn - directly, unabashedly.
Wahls, again, is skirting the issue of infection and even seems to hide it. She makes no mention of the use of antibioitics in her book or in the TED TALKS presentation.
She did not, apparently (though maybe in secret) do any very specifically outlined antibiotic protocol to address Cpn. Minocycline was used, though, it's unclear how. Other Rx were mentioned in that great link you found and I'm unclear how they fit in.
But, she did not follow either the Wheldon or the Scratton protocol, or one that would be a blend. Still, infection was addressed to some degree and, IMO, that likely helped a great deal along with all else she did, and tons of hard work on her part.
To be clear for all new here, Wheldon / Stratton are much more detailed and thorough in addressing Cpn. They also have some good supplement advice,
however, Walhs' nutrition, supplement and self care advice is splendid and goes, nicely beyond. That part is great.
I just don't want anyone new to all (with questions about the MS connection to lyme or Cpn) this thinking they can pick up Wahls' book and that it's all they need. It is not. But it's an excellent addition, along with having a doctor who is well educated in lyme and Cpn.
- MP -
The Marshall Protocol is not at all about diet alone, there are some very specific pharmaceuticals to that - and severe restrictions with certain nutrients.
About the MP, though, I did research it at length. While one write (JP Waterhouse, ?) did well with it and has excellent articles outlining her journey, it was a very rough ride.
MP is not for everyone. Not at all. Only for those with certain blood levels, HIGH vitamin D.
For those with low vitamin D or who require it, MP can ruin their lives. It has for some, and not just around the Vitamin D issue.
Very few actually meet the criteria. Of those, the MP still may not be appropriate.
Be sure to search past threads, read all you can but also consider the severe restrictions it impooses -- and support supplements are not allowed.
IMO, it's dangerous to even try to treat lyme without essential support for liver, kidneys, adrenals, heart and nerve fibers.
MP also does not address specific forms of lyme, or other tick-borne, other stealth infections.
It's vital to know that there is no flexibility to the MP. It's either the protocol, or not. There are no "modified MP protocols".
Now, each person may start with different meds in different doses but, still, the doctor who designed it makes it quite clear there are no modified protocols. He is not a fan of any supplements. At least the last time I spent any time studying it.
When you read her excellent account (all parts of it), be sure to be clear on the criteria in her case, how & why this worked for her body. That does not mean it's going to work for every body.
Also find the website for the Marshall Protocol, itself (just don't stop there). -
[ 02-08-2013, 02:52 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
I hesitate to say that this is similar to the MP, it is not. However, it also comes to mind.
This is far more impressive, IMO, than the MP, regarding how patients fare. Not all on it necessarily have lyme but it may cover many bases, to some degrees.
At least it does not limit vitamin D and can be adjusted for each individual. Supplements can go along with this.
Still, for anyone with lyme, it's best to have guidance of an ILADS educated LL doctor (MD or ND) who really knows the science of lyme and all that goes with it. -
Posted by Keebler (Member # 12673) on :
- If you are concerned with immunity, be sure to research
LDN (low dose naltrexone)
- go to the website of "the Better Health Guy" and search within that site, too.
&
Medical Mushrooms (a naturopathic doctor, acupuncturist, or herbalist is most likely to have knowledge in this area but be certain they are ILADS and LL).
Still, the characteristics of lyme must be considered. This is like no other infection. How it can interfer with the immune system must be considered if there is to be success.
Borrelia b "flips" one part of the immune system, fries another and just overall, short circuits & mucks it all up.
If borrelia, itself, is not addressed, all the immune support in the world is not going to help. Bb's stealth nature really goes to work in fine form here. We have to "think" like it does. -
Posted by Keebler (Member # 12673) on :
- Canga,
Even with the research steps above, if you are still asking yourself:
"enough for me to get on the MP bandwagon" it is important to know that there are various approaches to lyme treatment.
And PARASITES, HEAVY METALS, coinfections, must be considered. Lyme is never just lyme. And immune dysfunction is never just that, either. For those with parasites, heavy metals, and chronic stealth infections, the all must be addressed.
Certain liver dysfunctions, such as PORPHYRIA must also be considered and, especially, how to safely get toxic waste OUT of a body.. -
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - 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 incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
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,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links.
==================================
About Food Additives & Processed "food substitutes":
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Lymetoo (Member # 743) on :
Very important find, canga!
Posted by Lymetoo (Member # 743) on :
Canga.. How do we know that this was referring to Terry Wahl's case?
Posted by Keebler (Member # 12673) on :
- It's HER case report, solely. And she is one of the authors.
The details here (especially in the "Patient perspective" section) are an exact match to what she has written in her book and shared in her TED TALKS presentation.
However, there are a few key details in this case report that are omitted from her book and talk, such as:
Section: Case presentation
Excerpt:
" . . . Her MS medications included B complex vitamins, carnitine, lipoic acid, gabapentin, bupropion, baclofen, modafanil, mycophenolate, tolterodine, and minocycline. . . . " (end quote)
In neither the table of contents nor the index to the book, (link in next post) can be found any reference to the terms: minocycline, antibiotics, or infection.
I've tried to read all through the book and while my eyes spasm much and my concentration drifts, I could find so such terms or references, either.
Now, there may be a hint hidden somewhere that I missed (if so, someone please post) but, usually, an Rx such as "minocycline" if mentioned in the text should be in the index. It is not.
In no way do I intend to discount the very hard work of this author and her excruciating path or well earned recovery. And we have much to learn from what she writes & says.
It's just that, for OUR purposes, the book and video can be deceptive without all the detail of the case report.
We still don't know to what extend minocycline was used but, that it is was used at all, can make a world of difference to the outcome that I thought was just all about the contents of the book.
Neuromuscular electrical stimulation and dietary interventions to reduce oxidative stress in a secondary progressive multiple sclerosis patient leads to marked gains in function: a case report -
[ 02-08-2013, 07:25 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler: - And why this detail about the inclusion of minocycline matters so much to many of us here:
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
-
A M E N!! It's VERY important!
Posted by Keebler (Member # 12673) on :
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