1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
Discuss the article on the Forums.

Doctors in London or UK and inpatient clinics

Discussion in 'ME/CFS Doctors' started by nomad, May 30, 2013.

  1. nomad

    nomad Anyone interested in a London Support group?

    Messages:
    38
    Likes:
    14
    London, UK
    I'm looking for someone who can administer the various blood tests and start ruling out possible causes, I've come across Dr Myhill who seems very good but she's not taking on new patients. I'm also keen on finding raw food or food focussed communities or inpatient clinics as I'm really struggling with implementing dietary protocols.

    I'd be very grateful for suggestions.

    Briefly my symptoms are cognitive exhaustion along with confusion and intense anxiety, along with physical weakness and fatigue. I also have aspergers which means a hyper sensitive nuerology. I also my have severe muscle spasms which leaves me v tense. Its had a terrible impact on my life and I really need help

    Thanks.
  2. Hip

    Hip Senior Member

    Messages:
    2,626
    Likes:
    2,393
  3. nomad

    nomad Anyone interested in a London Support group?

    Messages:
    38
    Likes:
    14
    London, UK
    Thanks Hip, this is really very interesting for me, even more then the fatigue I find the anxiety really limits my ability to do anything. Coupled with that I get angry easily (but v good at keeping it hidden).

    Thanks for that direction, time for more research :)
  4. Hip

    Hip Senior Member

    Messages:
    2,626
    Likes:
    2,393
    I developed severe anxiety disorder from catching a respiratory virus. It took me several years before I found effective medications for it (I tried hundreds of supplements), and those effective medications are the ones I listed on the above linked thread.

    You might want to try the N-acetyl glucosamine (NAG) in particular. Several people with anxiety have told me that NAG worked very well for their anxiety (though equally, others told me they tried NAG and found no improvements).

    One other person who caught the same respiratory virus from me actually developed a condition of intense anger outbursts, though fortunately this cleared up after a month or two. The virus I caught is detailed on my website here, in case this is of interest.
  5. nomad

    nomad Anyone interested in a London Support group?

    Messages:
    38
    Likes:
    14
    London, UK
    Thanks for posting your webite link. You articlauted very precisely my symptons of metal anguish and turmoil caused by enaging with people and also with ideas. They create huge amounts of tension.

    I had chronic sinus as a child, to the point that I was operated on to remove them. The sinus was so bad that I would get throbbing pain in my forehead. I've also had major problems with breathing all my life.

    I've had periods of chronic inflamation, where even my face would swell up.I remember starting a course of anti-inflamatories a couple of years ago which included curcumin and they really helped. Once the very obvious symptons of inflammation moved away I shifted my focus to treating the anxiety, fatigue, loss of speech, muscle wasting and muscle tension.

    Recently I've been supplementing with colostrum 12grams daily along with collagen (spine was feeling compacted and joints very stiff) and this really helped curb loss of muscle and gave me a noticble sense of well bieng. I took a two month break from colostrum and collagen and the muscle wasting & tension returned with a vengence.

    Since you've mentioned inflammation, I've been thinking that my brain feels like it's on fire, I've always assumed this was because of the stress caused by the state I'm in, including the chronic anxiety and how angry it makes me. So I've started researching anti-inflamatories and have come up with the following list to try:

    Boswellia
    Natural Resveratrol
    Turmeric or curcumin
    Vitamin A and D3
    Sesame seed oil
    Vitamin C (10 grams over a day) in the form of sodium ascorbate
    Holy Basil
    N-Acetyl Glucosamine

    I've also found sodium bicorbate helpful with the muscle tension which leads me to believe that I have high acid levels possibly from respiratory/metabolic acidosis and I need to alkaline; lactic acid build up is probbaly whats happening.

    I've found celtic sea salt (damp grey variety) helpful, mixed in water and sipped througout the day. It cleanses the gut, boosts the immune system and restored electrolyte levels which in runs relaxes the muscles.

    I'm going to try this stack and see if it helps. Currently my anxiety does border on psychosis and confusion, and the muscle tension (including facial) is so awful that I constantly think about suicide as the only way out of this nightmare.

    Regards viral testing and anti-virals, this is where I tend to lose hope. There is so much mutation going on, and antibiotics overuse has made the situation much worse. I live in a huge city, and uptill a few years ago I was rotating from one nasty infection after another. I managed to get this under control using supplements, but suspect that I'm still carrying a underlying viral load.

    Thanks for the pointers, I've spent a fortune on supplements over the last 3 years, and after a while you lose the plot trying to figure out which of the many intense symptons you should be combating.

    I'm currently focussed on the Gut connection, and trying to keep focussed on that approach. The inflammation angle is very useful alongside this.
  6. nomad

    nomad Anyone interested in a London Support group?

    Messages:
    38
    Likes:
    14
    London, UK
    By the way I wanted to add that I had much success with methylation using 5 mthf along with sublingual B12 and TMG, I regained speech. I've also succesfuly used natural Lithium, B vitamins and fish oils to regain some of the cognitive loss I suffered.

    I've made so many gains, but it still feels like the last few hurdles are overwelming me right now. Admittedly, I've been hit recently by several successive major life events which really set me back. Stress sends me straight back into an intense regreassive state.
  7. Hip

    Hip Senior Member

    Messages:
    2,626
    Likes:
    2,393
    All of those are pretty good for reducing brain inflammation. Turmeric I find works better than curcumin. I would also add the following:

    Grape seed extract
    Propolis
    Cat's claw
    Ashwagandha

    I find that you may need to take say 4 or 5 of these anti-inflammatories together to get a good effect.

    You might also find my other anti-anxiety thread interesting:

    Non-Standard Anti-Anxiety Treatment

    The above thread talks about anxiety, brain inflammation, excess glutamate in the brain, and anti-inflammatories.
    I find high dose probiotics, plus the yeast probiotic Saccharomyces boulardii, very useful for lowering gut inflammation. In turn, this will reduce brain inflammation, because new research shows that inflammation in the gut triggers inflammation in the brain as a knock on effect (ref: 1).

See more popular forum discussions.

Share This Page