New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

pain twitching and diagnosis limboland??????????

Discussion in 'Pain and Inflammation' started by cynkevtay, Sep 11, 2014.

  1. cynkevtay

    cynkevtay

    Messages:
    4
    Likes:
    2
    HI

    I am writing as I feel I belong best here. Its been two years. I started with a month long bought of gastritis. Sick to my stomach couldn't eat pain etc. then hell broke loose. I started having pain in arms and legs. Even to the touch.. It progressively got worse to twitching all the time numbness and more pain. It changes daily hourly weekly. I have had MRI's EMG's NCV's Blood work gone to ND LLMD GP's Neuro's Rheumy's etc. I have had a igenex lyme test come back positive gone through a lot of diff treatment. Still pain persists in legs mainly but arms and elsewhere twitching random mainly legs but get it in my back eyelids arms hands feet etc. the pain can go form shooting to aching to you cant touch me I feel bruised. I am so sad. I am 36 and I feel still lost. If anyone has any suggestions please I am open. I am on paleo autoimmune diet, I have had yeast, parasites etc checked. I had low ferritin but that seems better. I only take a Xanax once a week to relax me when the anxiety gets overwhelming form feeling like total crap. I work and take care of my daughter but I am scared this will get to the point where I cant walk get out of bed etc. I am going to a special chiro as my neck has become so bad in pain and he practices Atlas Olongalogy. We will see. I still worry about MS Lyme ME. But Dr.s just don't know and chasing this is exhausting. I take supplements and do essential oils. I am open to any suggestions.

    Thank you

    Cynthia AKA exhausted and stressed
     
    justy likes this.
  2. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,078
    Likes:
    43,836
    What treatment did you have for Lyme?
     
    justy likes this.
  3. cynkevtay

    cynkevtay

    Messages:
    4
    Likes:
    2
    Ive done Doxy mino, Cowden Rifing, teasel, Samento, Thinking of doing salt C ??
     
  4. zzz

    zzz Senior Member

    Messages:
    563
    Likes:
    2,427
    Oregon
    Dr. Jay Goldstein successfully treated many patients who had the same symptoms you do, often including Lyme disease. His treatments were very complex, though, and his books are almost incomprehensible. However, he put a lot of effort into describing a protocol that other doctors could use. I have recently figured out enough of Dr. Goldstein's work to begin using his protocol, and the results are predictably fantastic. I will start a thread on this as I recover more and when I have the time available to do a lot of writing.

    I can tell you what will help; the biggest problem is going to be getting a doctor who is willing to follow this protocol, and a secondary problem is the expense of some drugs. If they are too expensive, there are alternatives, though. The most important thing to know is that your condition is very treatable, and when given the proper treatment, it does not take long to get results. From Tuning the Brain:
    The first thing Dr. Goldstein tries is naphazoline eye drops at a 0.1% solution; these are available via a standard prescription. In about 20% of patients, a few seconds after one drop in each eye, all symptoms disappear. These eye drops are cheap, and if they work for you, using them three times a day will generally keep you symptom free.

    But that's only for 20% of people. What works the best? Again, from Dr. Goldstein:
    Ketamine administered via mouth, nose, and eye affects nerves that go directly to the brain (mainly via the trigeminal nerve), and therefore affect the whole body.

    More on IV ketamine and lidocaine from Dr. Goldstein:
    I have boldfaced part of this quote, as Dr. Goldstein has reported this happening to his patients when other doctors infuse them with ketamine or lidocaine too quickly. If you have this done, it is essential to follow Dr. Goldstein's protocol. If the administering doctor won't do it, it's best not to have the infusion at all, and try to find a more cooperative doctor.

    Lidocaine administration is described in Betrayal by the Brain:
    Again, the infusions must be given slowly, over a period of three hours or so. Although Dr. Goldstein refers specifically to fibromyalgia here, he considers that all CFS patients with considerable muscle pain have fibromyalgia.

    As for simpler and cheaper treatments, Dr. Goldstein considers gabapentin (Neurontin) the best oral medication for all symptoms, including pain. (It's one of the medications I'm taking.) He used a dose of 100 mg to 300 mg, three times a day. It may be able to replace the Xanax. Guaifenisin, mentioned above, may also be taken by mouth; it's available OTC as Mucinex Maximum 12 Hour, and you would take two tablets per day, as the package directs.

    There are many, many more treatments available for your condition, but at this point, I would simply suggest that you look into the ones I have mentioned, and also get Dr. Goldstein's two most recent books, Betrayal by the Brain and Tuning the Brain. They're both available at Amazon, among other places. Don't worry if you find large parts of them incomprehensible; virtually everyone does. As one of Dr. Goldstein's patients explains, they were written assuming that the reader had a specialist's knowledge of neurology, psychiatry, immunology, and endocrinology. This patient has written a book entitled A Companion Guide to Dr. Jay A. Goldstein's Betrayal by the Brain - A Guide for Patients and Their Physicians.

    That's right - most doctors can't understand most of his books. This is a big reason that most of his treatments are not very popular or well known. The Guide is not so much a guide as an introduction; it describes some basic concepts and the fundamentals of Dr. Goldstein's theories, but I didn't find that it helped me understand his books any better.

    Nevertheless, although Dr. Goldstein retired in 2003, he left behind enough of his knowledge in these books for people to rapidly recover from ME/CFS and similar illnesses. It just takes a lot of work to see how that knowledge applies to each individual.
     
    Last edited: Sep 12, 2014
    Tired of being sick likes this.
  5. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,078
    Likes:
    43,836
    You might need to take two or more real antibiotics which can kill the different forms of Lyme. Doxycycline only kills off the active form, which might be sufficient with a brand new infection featuring only spirochetes, but wouldn't have helped if the cyst forms were already present.

    And despite all of the hype, I can't see any scientific evidence that Samento and Banderol are at all effective in killing off Lyme in people. The only study of them is 1) in vitro, outside of human bodies, 2) unpublished, 3) unreplicated, and 4) very preliminary.

    I just finished 12 weeks of 2 IV antibiotics (6 weeks of each), and didn't have any side effects aside from the expected Herxheimer reaction triggered by the release of toxins when spirochetes die. I think mainstream medicine is a good thing to try when someone has a very serious infection. Herbs might make for a nice complimentary treatment or followup, but I think it's also necessary to bring out the big guns.
     
    justy and zzz like this.
  6. cynkevtay

    cynkevtay

    Messages:
    4
    Likes:
    2
    I live in NY where Lyme disease is very hard to treat through the medical industry. I wish I could go to a Dr. that would help. But I ve been to many Dr.s including LLMDs who don't treat me with antibiotics. So I am stuck in pain and desperate. Today is a terrible day for me.. BUt I do appreciate all your suggestions.

    thank you
     
    justy likes this.
  7. acrosstheveil

    acrosstheveil Senior Member

    Messages:
    314
    Likes:
    107
    zzz, do you have the link to this original article/study? I would like to show this to my doctor. I doubt he's going to prescribe me any ketamine without some serious evidence that it will help me.
     
  8. zzz

    zzz Senior Member

    Messages:
    563
    Likes:
    2,427
    Oregon
    All the quotes are from the two books named in the post. To my knowledge, the quotes are not available online; I typed them in manually.

    If you get the books (which I actually recommend to everyone), you can easily find the quotes by looking up "ketamine" in the index. There is a fair amount of additional material on ketamine and lidocaine in these books.
     
  9. acrosstheveil

    acrosstheveil Senior Member

    Messages:
    314
    Likes:
    107
    thanks, i'll get the book
     
  10. RYO

    RYO Senior Member

    Messages:
    213
    Likes:
    477
    USA
    Besides Igenex Lyme test, was your Lyme antibody and western blot positive?
     
  11. JalapenoLuv

    JalapenoLuv

    Messages:
    299
    Likes:
    99
    unknown
    If you're not getting well from the lye treatment my guess is that you have an underlying virus that's disabling your immune system by stopping Gcmaf. I would have a nagalase blood test run and if it is above 0.6 U start a trial of sublingual Goelic. http://gcmaf.eu/

    Test http://www.hdri-usa.com/

    If you have chronic anxiety that's a sign you could have a severe bartonella infection as well. Those are very hard to detect so you probably want to give highly absorbable forms of cucumin a try to see if they help.
     
    Last edited by a moderator: Oct 4, 2014
  12. msf

    msf Senior Member

    Messages:
    3,150
    Likes:
    4,340
    Hi Cynkevtay,

    I was going to make a new thread, but I found that your symptoms are very similar to mine, eg. gastroenteritis then shooting pains, etc.

    So far I am negative for Lyme (including LTT), but I have tested positive (both IgG and IgA) for Yersinia, which at least explains the gastroenteritis (I also had mesenteric lymphadenitis, false appendicitis and exudative pharyngitis, so I'm pretty sure this was the trigger). I am currently being treated for this infection, without responding so far, but as it's known to be a co-infection with Lyme it might be worth getting checked out for it.

    Mark
     
  13. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,078
    Likes:
    43,836
    There are several forms of Yersinia. The "plague" version might be a co-infection with Lyme, but the gut version isn't. You probably have the gut version, not the plague.
     
  14. msf

    msf Senior Member

    Messages:
    3,150
    Likes:
    4,340
    Hi Valentjin,

    I think you might have meant that the other way round, or maybe you wanted me to be more accurate.

    The gut kind, Yersinia Enterocolitica, is included amongst the co-infections in the W. Berghoff article, Borrelia and Co-infections (or something like that, it's not hard to find), but it took me quite a while to work out that it is not supposed to be carried by ticks, but rather just seems to correlate with Lyme disease, perhaps because either one first weakens the immune system, leaving it susceptible to new infections.

    On the other hand, it might be found in lots of Lyme patients because these patients have lots of tests, or because Borrelia and Yersinia antibodies (Yop D particularly, I forget which BB antibody this corresponds to) are cross-reactive.

    Anyway, I was just repeating what I'd read, so you'll have to take it up with W. Berghoff.

    Mark
     
  15. msf

    msf Senior Member

    Messages:
    3,150
    Likes:
    4,340
    I've just realised that I should use shorter sentences.
     
  16. dan062

    dan062 Senior Member

    Messages:
    120
    Likes:
    102
    @cynkevtay: I'd be way of going further down a rabbit hole with Lyme and infectious diseases testing when that might not be the problem at all (did your blood work suggesting anything along those lines?)

    a lot of us seem to have weird symptoms like this that started after an infection. For me (and most CFSers) it was a throat bug (that possibly spread to the vagus nerve - that's one theory). For others everything was kicked off by a bout of gastritis. We seem to end up with a lot of the same symptoms (I don't have much pain, but I have a lot of muscle twitching and jerking, which at first really freaked me out).

    I'd advise reading up on the microbiome, which will help you understand why taking repeat courses of antibiotics might only be making your situation worse at the moment and in the long run. I'm also trying to figure out how to sort out my situation, but it seems as if just a little bit of dysbiosis (unbalance) can create an awful lot of autoimmune chaos.

    I'm not saying that there definitely isn't a virus at play (there probably is, and for me too). But until you find the means of identifying it correctly (and thus finding the right treatment), your best bet might be to work on the above.
     

See more popular forum discussions.

Share This Page