Hello from the UK

Discussion in 'Fibromyalgia Main Forum' started by Clouddead, Oct 16, 2006.

  1. Clouddead

    Clouddead New Member




    Hi there,

    I joined this site to browse the board but have been moved to post by the fantastic collective knowledge and battling spirit of everyone here.I am 25 yrs old, male, and was diagnosed with CFS last week, having been ill for 6 months.


    For me it all started with a very very strange viral illness that had a build up of about 6-8 weeks of feeling 'strange' followed by what the Doctors were convinced was acute Glandular Fever caused by Epstein Barr. Turns out i have never had Epstein Barr. All tests have been negative but I am currently awaiting results for HHV-6, which I had to battle to get tested for and I am sure it is the culprit.

    My girlfriend caught whatever it was from me and has been ill for 4 or 5 months but at a much lower level, she was only off work for 3 weeks and now only suffers mildly. The reason I had it worse I believe is that I was an athlete training 20-40+ hours per week, very intensively. It is well known that such training is bad for the immmune system, ther e have been many studies confirming this.

    I have virtually given up on the NHS (I am from the UK) and am instead learning as much as I can about the immune system and various pathogens. The attitude of my GP, who is very nice and sympa but clueless, is that CFS is a 'mystery' so I should go home and wait it out! No chance, there is a cause for this, probably different for each individual but a cause nonetheless and I'm damned if I'm going to sit back without at least trying to help myself. I am fortunate that I now have the mental clarity to do this, I understand very well why many people with CFS would struggle with this as during the first couple of months of my illness I could not read a newspaper or follow simple plots on TV soaps which was a bit of a shock! I can now read as well as before and can even play the guitar and piano again which is nice. My symptoms now are fatigue and crazy lymph nodes everywhere, on a cyclical basis. Lysine seems to be the one supplement that helps, maybe CoQ10 does too. Will be trying transfer factors soon, and if all else fails (and HHV-6 is confirmed) I will try the Valcyte and hope the side effects are ok for me.

    So I just wanted to say hello as I have found it very helpful browsing the boards - I feel extremely trapped by this illness and it's a relief to know i'm not alone. It's also eye opening to learn how bad it gets for some and uplifting to see people battling against it. Hopefully I will be able to contribute something too!
  2. u34rb

    u34rb New Member

    Hi Clouddead,

    Have you tried Low Dose Naltrexone (LDN) for your fatigue? It has helped my fatigue.

    If you have fibromyalgia (FM) symptoms, even without a diagnosis, you could alays try Guaifenesin which is a major feature of this website. But you willl need to read the book first.

    Also, what do you know about hyperbaric oxygen (HBO)? If you let me know what part of the UK you are from I can locate your nearest facility. It can be a small world, you might be around the corner.

    u34rb
  3. deliarose

    deliarose New Member

    if you're right about the viral trigger of your illness, then maybe a transfer factor will help.

    I had acute viral onset (same as you).. and struggled for 10 years!

    I went to see a Dr. Joseph Brewer in Kansas City, MO, in August (wwww.plazamedical.com) and he suggested i try something called Immune care 64 --a transfer factor from a company called Immunity Today.

    It's pricey.. but u don't need a prescription.. and I'm guessing they will ship it to the UK.

    I feel like I am making progress finally!

    He says he has treated 500 patients with this TF .and 75 percent of them responded well.

    If you check out his website, you'll see he's been at this a while.. and has long believed that viral infections are at the root of this disease.

    He also uses Valcyte.. but only in older patients ... because it can damage your fertility.

    In addition to the TF, he recommended lots of antioxidants, olive leaf extract, green tea extract, ALA, and most importantly glutathione.

    Interestingly, he seems to think HHV6 is the culprit in most CFS cases.. but he doesn't think there is a good test for it yet.

    He didn't even bother testing me for viruses.. just prescribed the TF.. but then it's been 10 years..

    In any event, I sound like a Brewer groupie..which I'm not.

    I just hope he's right.. and so far his treatment seems to be working.. and I am encouarged by the results of the Stanford trial to think the stealth virus theory is the right one.. at least in my case.

    Anyway, just wanted to share .. esp. since I am from the UK.. and the doctors were hopeless when I was seeking help years ago.

    Oh, and one last thing.. you seem to have caught this early, so remember rest is crucial..Rest, good nutrition, good quality sleep.

    Good luck
    Delia



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  4. deliarose

    deliarose New Member

    one last thing

    You might want to check out the posts of Stormyskye and Elsa -- 2 former board members who are now in remission and no longer post...

    Their protocols may be of interest to you as you do your research.

    Just put their names in teh search box.

    OH.. and also, Rich Carson, the CEO and founder of Prohealth is also a big Transfer Factor fan.

    He has posted about his road to recovery..Check out a post called "Mercury detox" ..and I will post separately his testimonial with comments on TFs.

    cheers
    Delia
  5. deliarose

    deliarose New Member

    FOUNDER'S CORNER
    On The Road To Recovery

    Last week I asked visitors to ProHealth's Immunesupport.com CFS and FM bulletin board what they wanted to hear about in this week's Founder's Corner, and their answer was a resounding: "The Rich Carson story." Although I am happy to share my story, I do not want to give false hope to readers when it comes to achieving a complete recovery from severe Chronic Fatigue Syndrome. My road to recovery has been long and difficult; it has been filled with obstacles and dead ends. But it has also been a journey filled with many small victories - that in aggregate have allowed me to resume work after more than 15 years of total disability.

    My story started in August of 1981 when I developed acute onset CFS at the age of 25. Blessed to be diagnosed almost immediately by David Doner, MD, a Santa Barbara internist who will always have a special place in my heart, I began my CFS journey abruptly, with my life's script in shreds. "Rich" Dr. Doner said, "I think you have something called chronic CMV or chronic Epstein Barr virus... How long will it last? Probably about a year, but only if you take very good care of yourself - avoid stress, get plenty of rest, plenty of sleep, stay away from alcohol, do not over-exercise, get a good diet, and take nutritional supplements."

    I was the first patient Dr. Doner had ever diagnosed with chronic EBV or CMV. What's even more amazing is that he had never even heard of these conditions before investigating my case. He is a genius.

    I became totally disabled from my profession as a stockbroker/investment specialist in July 1987. In between my diagnosis and the beginning of my period of total disability, I started and led one of the first and largest Chronic Fatigue Syndrome support groups in the country. I became an avid fundraiser for CFS research and focused my fundraising on very wealthy individuals, particularly those in the entertainment industry (more on that later). I also became obsessed with discovering what was making me ill, doing everything I could to find a cure, and trying to prevent my life from being completely destroyed by a torturous disease.

    I started ProHealth in 1988 as a means of achieving four goals: to discover the cause of CFS; to discover effective treatment strategies; to raise funds for research; and to support my fellow patients by sharing my findings.

    I have tried virtually every treatment imaginable for CFS. A partial list would include acupuncture (weekly for five years), Chinese herbs, chiropractic and ayurvedic medicine, massage therapy, exercise, yoga, cognitive therapy, a list of pharmaceutical drugs too long to mention, and virtually every supplement known to man. I have flown to Italy for injections of human transfer factor, meditated for days on end in healing intensives, and received treatment from "energy healers," naturopathics, rolfers, psychics, and medical specialists of every flavor (including cardiologists, neurologists, internists, rheumatologists, gastroenterologists, infectious disease specialists, otolaryngologists, internists, psychologists, dermatologists, psychiatrists, dentists, orthopedic specialists, and more). You could say that I have been around the block.

    The first major turn in the road appeared in December of 2000 when I received a diagnosis of mercury poisoning. I assume that this was the result of an accident in high school when I spilled about 1,000 grams of mercury in my car. My chemistry teacher was never told, nor did I confide in my parents; I was more afraid of getting in trouble than of being exposed to a deadly neurotoxin.

    Those lab results were a cause for celebration, because after almost 20 years of chronic illness, I finally had a target to attack. And so began the "mercury detoxification" segment of my CFS story. Almost six years have passed, and I remain on the same mercury detox protocol: The only difference is that my mercury levels are now normal. Yes, my health and well-being began to improve once I began the protocol, and I suspect that mercury and other poisons in our environment play a role in the pathogenesis of a significant number of cases of CFS.

    The second major turn in the road occurred when I began taking transfer factor. Many of you know that ProHealth sells various transfer factor products, and because of that, I can not make any health claims about this product and its effect on my CFS. I can tell you, however, that I believe transfer factor has played a significant role in my recovery.

    Volumes of research have shown that patients with CFS may be vulnerable to various pathogens that generally do not pose a threat to non CFS sufferers - EBV, HHV6a, CMV, candida, mycoplasmas, measles, coxsackie B, parvovirus, Chlamydia pneumoniae, etc. I do not profess that transfer factor will work for others with CFS, but I am confident that specific types of transfer factor help to support my immune function and keep me free of opportunistic pathogens. I will be happy to discuss transfer factor at a later date.

    The third and last major turn in the road happened in November of 2003 when I did the unthinkable for someone who owns a supplement company: I saw a nutritionist to discover how I could get nutrients from my diet (of all places!). I had been hearing great things for years about Santa Barbara nutritionist Dale Figtree, PhD, and I followed her dietary instructions to the letter. Her three-part program is easy: avoid bad foods and chemicals; eat fresh, whole, organic (whenever possible) foods; and, finally, drink fresh vegetable juice daily.

    Dr. Figtree turned out to be a godsend, as her program ushered in a new level of health and vitality that I had not known for 20 years. I learned that taking supplements is not good enough for treating a disease as serious and complex as CFS - getting a diversity of super concentrated nutrients from food sources is far more important than I ever imagined. Moreover, it is a lot of work. But it is worth it a thousand times over, so now I am addicted to a good diet and, in particular, to juicing. It is actually a great place to be "stuck," and I am eternally grateful for the huge improvement in my health and vitality.

    I am now able to work again, and although I do not consider myself to be fully recovered, I can see that I will achieve this goal in time. I hike in the mountains, I rollerblade, I can endure long meetings, tight deadlines, and stressful schedules. And although being the CEO of ProHealth is challenging and the stress is sometimes hard on my health, I do endure; I push on, and I feel successful. There are bigger things ahead for me now, namely changing the name that humiliates so many patients - chronic FATIGUE syndrome - to something that will be understood and taken seriously by society and the medical establishment.

    The takeaway from my story is this: You can improve your health in amazing ways that you can not dream are possible. But in order to achieve this goal, you will need to play a major role in managing your health and wellbeing. And whatever you do, do not take diet for granted. Supplements are great, but they are no match for the healing your body can achieve when empowered with a diet of fresh organic foods, concentrated vegetable juices, and a lifestyle that minimizes stress and maximizes rest, sleep, relaxation, and peace.

    Thank you for your patience in waiting for my story.

    Sincerely,

    Rich Carson
    ProHealth Founder and CFS Patient
  6. deliarose

    deliarose New Member

    but I also found Ken Lassessen's site very useful.

    he is a former Microsoft engineer whose whole family got CFS.. in any event he caught it early, did his homework and was able to cure himself.

    He has built this fantastic website that draws together all teh current research on CFS .. (Nicolson, Jadin..Berg..).. and provides a roadmap to recovery.

    Google CFS, Ken Lassessen and For What It's Worth.

    He also established a yahoo group.. CFSFMExperimental.. that discusses various treatments.. etc..

    Be well
    Delia
  7. Clouddead

    Clouddead New Member


    Thanks for the response, that's very kind of you all!

    u34rb: I haven't tried the LDN yet, I will definately look into it, I am trying to be vaguely scientific by keeping supplements somewhat limited and adding and subtracting them so I have a hope of telling what makes a difference. I'm in Somerset, I don't have FM symptoms, I had never heard of it until recently, it sounds horrendous so you have my sympathies on that one. The only real pain is the Lymph nodes under my arms, sometimes they can be very painful but they are not so bad since I started on the Lysine - or perhaps it's a coincidence, it's so hard to tell! The HBO idea is something I hadn't considered. It's funny really as a competitive bike racer I know a few people who have used it to legally boost their haematocrit!

    Jillstarr: hello! Sorry to hear you have been ill for so long that must be tough to cope with. All I can say is don't give up, you hear of people recovering completely after being ill for years.

    Deliarose: Thank you so much, that's really kind and useful too. I have already signed up to Ken Lassesen's experimental treatment site, they seem to have some good ideas. I am sorry to hear you have struggled with this for so long, I'm glad to hear that the TF seems to be working for you. I am just about to order some myself!

    I am getting up to speed on the antioxidants. I bought some blueberries yesterday and am now convinced they must be good for you - anything that tastes that bad must be!! Glutathione does seem to be important I have just started taking some precursors. You can actually order liquid GSH (glutathione) in the states but it is sent in ice and is very expensive and probably not able tpo be shipped to the UK, I can send you the website address if you like though! I am taking Olive Leaf (20%) but am not sure of its worth to me yet. I am excited about the TF's though - I used to supplement with Neovite (bovine colostrum) when I was trying to recover from especially hard training. Anyway, I saw I had some left over recently and took some - within hours I felt really rough, and what I felt seems to be a Herxheimer reaction - something else I have only recently discovered the existence of!

    Finally, I think the fact that you had to go to Kansas to get some useful advice is a pretty damning inditement of the situation in the UK. Before I was ill I always believed the M.E. was a real illness, it seems so obvious! It makes me incredibly angry to think of people being told to go home and rest or worse, that they are making it up. HHV-6 does seem to play a big role in this mess. I believe I caught this from a friend who had heart problems and was then diagnosed with MS and then CFS, all linked to HHV-6. My girlfriend was also told she probably had glandular fever but tested negative for EBV repeatedly. The good news is that she is back at work now and my friend is now back to 80 or 90% health. He did a 150 mile bike ride on Sunday though so it's all relative though!!

    Charlie21: Thanks for your reply, the main thing I take from your post I think is that these illnesses have causes and treatments, that's great news about Mirapexin. Even though I don't have FM I will look into it, especially as some people believe FM also has a viral trigger.


    Wow, that's a long post! My only news today is a negative Lyme disease test, not a surprise as it doesn't really fir my symptoms. Also not a surprise as I know how poor the Elisa test is! Even my gp admitted that!



  8. supergirl99

    supergirl99 New Member

    Just wanted to say hi. Diagnosed with CFS in July this year, have good days and really bad days, but am trying to get my head around pacing myself now - apparently that is the key.

    Chin up
    x
  9. deliarose

    deliarose New Member

    and pls pass on anything u pick up. (BTW, I live in the States now .. so it wasn't such a huge schlepp to Kansas City.)

    But a lot of the docs over here are no better than the docs in the UK, except for their willingness to Rx drugs.

    Ref: glutathione: You can get GSH shipped to you in the UK from the US. I know a woman on the CFSexperimental list who does...

    I am looking into shipping some to my mother.

    Undenatured whey is a cheaper option.. check out RenewPro or ImmunoPro from Well Wisdom. Ken;s site has a link to the supplier.

    They sell it here also.

    For my part, I am taking precusors, such as NAC, ALA and ImmunoPro and essential GSH. Pricey but I am losing money all the time I'm out of work.. so it's a toss-up.

    Also, have u found any useful UK websites?

    Cheers
    Delia

  10. boltchik

    boltchik New Member

    Welcome to the board! Sorry you have CFS, this is a great place to get educated on the illness. I am from California, have had CFS/fibro symptoms since college. Just officially diagnosed this past year. Fatique at its worst this year, but I am optimistic for remission sometime in the near future! I hope you find a program that works for you also, so that you are able to get out there and compete again some day! Take care, Kim :)
  11. u34rb

    u34rb New Member

    Clouddead,

    I suggested LDN since you said in your first post that you have been diagnosed with CFS. LDN has helped my fatigue. My best diagnosis is "Chronic fatigue with pain", which is close to CFS.

    LDN is not a "supplement". I agree that we should only make changes to our regimes one-at-a-time, so as to tell what's going on, (or not).
  12. rockgor

    rockgor Well-Known Member

    Welcome to the board. I am not from the UK but I have ancestors from England, Wales, Scotland, Ireland and Norway. You know those Vikings got around.

    Sorry to hear your are ill at such a young age. It must be especially difficult for someone who was so athletic.

    As you have already found out, there are lots of nice people here to share info, experiences, jokes, etc.

    Tinkerteetonk as P. G. Wodehouse used to say.
  13. wish_to_be_healthy

    wish_to_be_healthy New Member

    welcome to the board...

    I was 23 when I first got really sick...shortly after spending 8 months in London...Not that being in London was the cause, I was sick as a kid, so it probably was going to pop up at some point...or I could have gotten it from my then boyfriend, now husband, who came down with Mono shortly after we started dating...who knows?

    Sounds like you have done some research already from your post!

    This is a great place to find information

    Suz
  14. Clouddead

    Clouddead New Member


    Thanks, I wasn't expecting so many responses!

    u34rb, sorry I thought LDN was a supplement...I have checked it out now and it does sound really good. I think my main problem is I am so eager to 'cure' myself I want to try everything at once. I am definately going to pursue that though.

    Deliarose: Interesting what you say about GSH, I'll have to look in to getting hold of some. And I haven't found any useful UK websites, it sounds bad but the official M.E. type ones seem very focused on patients rights and coping. Obviously a good thing but I am more interested in the medical side of things and figuring out a) the problems and b) the solutions (if only it was that easy!).

    Hi to everyone else, from the UK and the US! I have ordered some TF 560 and will hopefully start on that next week, and will post my experience with it on the TF board With some trepidation as I have been feeling a lot better the last month or so and although I want to feel a herx to confirm it's working I don't really want to be plunged back into the full on 'flu hell! Oh well....
  15. u34rb

    u34rb New Member

    Clouddead,

    What do you know about hyperbaric oxygen (HBO)? If you let me know what part of the UK you are from I can locate your nearest facility.
  16. Clouddead

    Clouddead New Member


    Hey u34rb, I'm from Somerset. HBO sounds really interesting, something I hadn't considered. Has it helped you much? Is it expensive? As the months have passed the brain fog, sleep problems and severe fatigue have lessened thankfully, I now seem to get 'viral flares' where my lymph nodes swell and I become tired and ill feeling.

    I just feel if I could find something to kill this damn virus I would not have a problem. I know for a lot of people there are many factors, maybe there are for me, but it feels like it's just this one virus. I really want to help my girlfriend too, she has had a flare up today, she doesn't have it as badly as I do but I still feel really bad about it.

    So I would be really interested to hear about the HBO. Whereabouts in the UK are you?

  17. lfrost

    lfrost New Member

    I dont come on here much now because I am now nearly better and job hunting after 20 years of ME. I just want to share with you-if you put the lightning process into the search on here you will find a lot of information. Just leave it to you to decide, but many of us have done it in the UK and we are all nearly recovered, just building up our strength. It was amazing and has changed my life.

    I will not say much more on here because it has caused a lot of problems and nastiness from people not believing me and thinking I am selling it. I am not and I have genuinely been cured. There is also a separate Lightning process website. It all sounds too good to be true but it does work. Good luck to you all from the UK. Lucy
  18. deliarose

    deliarose New Member

    my 2 cents on the TF herx..

    My first month on the TFs, I noticed I was a lot more sluggish and tired... even tho somehow I felt more normal overall.

    but the tiredness seems to be waning now...I assume it gets easier as u get the viral load down. That's in LESS than 6 weeks.

    In other words, the bad reaction to the TF seems to be wearing off pretty quickly in my case.

    I don't know if that would apply in your case.. since presumably the virus is more recent...

    but i would have thought that at the very least you would see the benefits of teh TFs sooner than someone like me..

    ie.. I would expect you would be on it for a shorter time.

    Of course, what do I know? All I can tell you is that the infectious disease specialist I saw said he had patients who had had CFS for 5 and 6 years.. make such a good recovery that some of them went on to run marathons.

    Good luck
    Delia
  19. deliarose

    deliarose New Member

    I had my first glutathione infusion yesterday ($120 -- ouch)
    and i did notice an increased mental clarity for a short period... and then some additional fatigue (mebbe cos the body was detoxing).

    Anyhow, thought I wld mention that.

    They started me off at a low dose 400 (mg?) and i hope to get up to 1,600....

    I'm also continuing to do the ImmunoPro and essential gsh and NAC....

    I'm definitely improviing overall.. but it's a slow and expensive business.

    delia
  20. Lolalee

    Lolalee New Member

    So glad to have another man here. You are right about this message board....lots of great info and wonderful support. I've been ill for almost 10 years...FMS,CFIDS and CMP (Chronic Myofascial Pain). I've just been limping along and coping as well as possible...pushing myself way too much. My body finally said "Enough!" and quit several months ago. Now I am housebound and spend a large part of the day in bed or on the couch.

    I do have hope that I will get better. I feel like I have a major virus...feel really sick...fatigue, malaise, sore throat and oh, yes, the pain. I've started seeing an Infectious Diseases Specialist and hopefully I will convince him to do some viral testing on me. He wasn't very receptive to the connection of viruses and CFS the first time I saw him. I did manage to have him test me for Heavy Metals (mercury,etc.) and the virus Rickettsia. Still awaiting the results. Oh well, baby steps at this point.

    Good luck to you. I wish you well and I'm glad you found us.

    Lolalee