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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Success Rates with top doctors?

Discussion in 'ME/CFS Doctors' started by nina_online, Aug 9, 2009.

  1. mojoey

    mojoey Senior Member

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    Hi SD

    funny you mention electron transport chains, because these are closely related to the ion channels that Mike said are so critical to fix. I really think those chains are the key to restoring mitochondrial dysfunction. Myhill says the blocking of these chins (I-V) in the inner mitochondrial membrane is due to toxic stress. However, most suggestions are dietary and meant to control damage vs. fix the issue. If neural therapy could restore these chains and ion channels, that would mean cells could start functioning again and theoretically allow oxidative phosphlorylation to work again.
  2. m1she11e

    m1she11e Senior Member

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    Sdd1244

    Hi again,

    I know you give a list of the homeopathic formulas you take. It is hard though to look them up because all homeopathic formulas are a bit confusing when listing what they treat. I looked al of yours up individually and they look like good formulas but...do you know which ones specifically treat the Mycoplasma infections?? Also, do you know which one treats HHV6 by chance? :confused: (I dont know that you have HHV6, I was just curious if you knew if one of the companies had one. It seems easy to find ones for EBV but not HHV6)

    I thought of doing the Marshal protocol and think Amy is amazing. I was just warned by so many people that they got really bad after doing it and they were always told it was a herx. One lady was their poster child and relapsed worse than ever. I didnt know if I could stay out of the sun and do the glasses either. :cool:

    Of course all long term abx have a draw back and it seems few people go on them and maintain wellness. They seem to kill off one bug and realize they have 4 more or a virus and maybe even Lyme. It seems they are finding a new pathogen in this disease every month. That is why I like the alternative approach. Anti virals and abx landed me sicker than EVER. I just think they weaken the body too much and in the end you are left with a crippled immune and digestive system.

    Sooo, do you know which formula is for the Mycoplasma?? I realize they all contribute to the healing and are all important for your particular situation.
    (Hows those BEMER sessions working out????:D)

    Thanks,
    Michelle
  3. SDD1244

    SDD1244 Guest

    Hi Michelle,

    The holistic practitioner who uses these formulas on me, does something called "EAV testing". I would highly recommend consider having this testing done, but also finding a practitioner in your area who is familiar with mycoplasma and treating these infections with UNDA and/or PLEO formulas. After my first EAV testing (AKA: Electrodermal testing).... it really changed my entire outlook on health... it was amazing.

    Hi M0Joey,

    I've found that Dr. Nicolson has a very good understanding of how to treat these complicated infections. I hope you checked out his link on lipid replacement therapy and also the video presentation given by Amy Proal.

    Also, Prof. Nicolson is still posting in MedHelp if anyone here is interested in asking him any questions. He was scheduled for 3 days and yet he's been on longer... answering questions that were even posted yesterday ! I've found that he is a very good resource and I've read that he had CFS like symptoms himself. Also, if you e-mail him, he will always respond and usually within 24 hours. I'm so happy MedHelp allowed me to invite him to the community and invited him to have his own forum there !

    http://www.medhelp.org/forums/Autoimmune-Disorders/show/358
  4. KC22

    KC22 Senior Member

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    Hi SDD1244-

    Thanks for all the information. I went to Medhelp and found good info. I haven't read it all as there is a lot there. I did go to Garth Nicholson question/answer forum. He did talk about the lipid replacement therapy. He talks about NT factor. Have you ever used it???

    Do you know anyone who is a patient of Garth Nicholson. He seems to have a whole picture of everything. I am finding his information very good.

    Thanks for leading us this way!!!
  5. mojoey

    mojoey Senior Member

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    Garth Nicholson

    Thanks SD. I read his 2006 paper. Lipid replacement therapy seems to address a secondary result not the cause of mitochondrial dysfunction. However, I think it would be a great adjunct therapy. Mike has said that his doctor administered lipid therapy for cognitive resuscitation, but I think it can have much broader uses such as replacing membranes damaged from peroxidation.

    I've been doing ozone therapy for the last few months, and I consider it to be one of the most helpful things i've ever done. If oxidation were our unequivocal enemy, ozone would have no place in treatment for CFS patients..yet many CFS patients seem to benefit from it. Ozone practitioners say that the enemy is actually toxic buildup (can't argue with that) which then causes a hypoxic state in the cells, which THEN leads to lack of antioxidant enzymes. Whether or you not you believe in this chain of events, it definitely makes scientific sense and would say that taking massive quatities of antioxidants is an exorbitant bandaid.

    I believe that the correct long term therapy isn't one of the other, but rather a balance of oxidation and antioxidants.

    I have taken large quantities of NT factor but it never helped. Ozone, which is a ROS, did.
    abporter likes this.
  6. SDD1244

    SDD1244 Guest

    KC22,

    I just recently purchased NTFactor and started taking it about a week ago. Sometimes I notice that it will give me energy and other times it doesn't. This lipid replacement therapy is quite new to me and so I'm going to try to be learning as much as possible about it and what I need to do next.

    M0Joey,


    So who do you see for ozone therapy ? I've never heard of this treatment. I do know that my new neuro-chiropractor told me that the BEMER3000 will apparently improve and support important functions like microcirculation, oxidative balance and the immune system. Thus, making it very difficult for viruses, fungus and bacteria to set up shop and survive in me. I guess our bodies are an eco-system and we need that perfect balance in order to be healthy. I am interested in hearing about your ozone treatments. I did purchase a BEMER3000 and will keep everyone updated. I am amazed so far with this product, as it gives me energy after each treatment. I think using this, along with suppressing and/or killing the infection itself, will give me the extra push that I need to overcome this disease (I hate referring to CFS as a "syndrome").
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Bemer 3000

    So how is this working out for you SD?

    Also, about how much does it cost?

    Thanks!
  8. dannybex

    dannybex Senior Member

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    totally agree Joey...

    I couldn't agree more. While some of these famous docs may have had some success with some patients, many of them seem to be well known simply because they were the "first" on the scene (in recent history anyway), were courageously outspoken during the that period, and/or are quite possibly just great at self-promotion and seminars. Additionally, it seems like many of these big names have become quite rigid in their own theories and treatment protocols because, and at least in some cases, their egos may have gotten in the way, preventing them from even considering the alternatives, pun intended.

    I've posted the following many times on other forums...but not here: Our local CFS/FM support group has about 35-40 members, perhaps more. Of those, I personally know 6-8 people who are substantially recovered, and 5 of them are 100% and have been so, for anywhere from 2-8 years.

    Three of the men have been back to work for years, one woman has gone back to school, and the other has just finished training in a mind-body protocol that helped her get unstuck from her 2 year 75% plateau, to 95% -- and her MCS completely disappeared as well. She was sick for 17 years. And another woman, who is retired and in her mid to late 60's, (and who I believe considers herself at about 90%) hikes during the summer, and cross-country skis during the winter.

    Only ONE of these recovered patients saw a couple of the names on Cort's list (in the second post in this thread), and those doctors were not the one that eventually helped her the most. The rest of my friends saw a variety of local M.D.s, but mostly local naturopaths, who helped them help themselves get well.

    The one M.D. with a decent success rate here is a man who treats CFS/FM as being the result of multiple stressors -- physical, chemical, environmental, emotional trauma, etc., -- which eventually cause the immune system dysfunction and systemic inflammation, which then sets up the possibility of chronic bacterial, viral, fungal, etc., infections. It's his opinion that the infections won't clear up until the immune system becomes balanced, and that doesn't happen until these (possibly) hidden initial stressors are addressed. Not sure if he'd want to be interviewed (for the same reasons Mike's doc is off the radar), but I could ask him.

    His approach makes sense to me, because there must be a reason (or reasons) why our immune function gets so screwed up. Almost everyone in this country has many of the viruses we may have, but they don't become chronically ill for years or sometimes decades. And often they don't even get sick in the first place despite the presence of these 'bugs'. One of his key points is that we may not even be aware of the stressors that might be involved that lead to becoming chronically ill.

    He is somewhat well-known within the local area, but doesn't toot his own horn. And as mentioned above, most of the docs have been naturopaths, or an integrative M.D./N.D. approach, with patient responsibility (i.e., pacing, 'active resting', 8-9 hours of sleep, and even some of the so-called 'woo-woo protocols like Gupta and EFT, etc.) playing a huge factor in lasting recovery.

    Even Cheney (quoted in an NCF article) when asked how many of his patients had recovered, replied "None". But now he says with his new protocol, his 'success rate has doubled'?

    ???

    That took an hour to write! So now it's time for a break. :)

    Dan
  9. Recovery Soon

    Recovery Soon Senior Member

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    I have been going to Dr. Enlander in NY for 2 years.

    I can't say the treatments have made a difference in my condition, but it is reassuring to have him as a physician. He is thorough, accommodating, reasonably priced (I pay nothing with my insurance) and a great guy.

    I personally don't think there's any Doctor out there who can cure CFS at this time, so it really comes down to how competent your physician is about understanding CFS, and how good they are as a physician in general. Unfortunately, that's the best you can hope for at this point. No miracle workers yet. So yes, there are probably lots of unpublished, undiscovered, great CFS docs out there.

    Also, Enlander's staff is the BEST, most hospitable staff I have ever encountered. Walking into that office is like walking into a relative's house.
  10. Abbydoodle

    Abbydoodle

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    I don't think of Dr. Salvato as a one trick pony. She and I have devised a lot of things for me over the years. I am back in there again and she is really helping where the doctors at the big university group did not have a clue. I have some underlying issues that contribute to CFIDS/ME and fibro and all the assorted fungal and virus issues. Right now those boys and girls got out of the box and want to play....she is helping me put them back in the box before I have siezures and a coma again. She, my neurologist, and geneticist are my angels on earth keeping me alive.

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