When to go to the Dr. - advise

Discussion in 'Fibromyalgia Main Forum' started by upnorth, Aug 4, 2003.

  1. upnorth

    upnorth New Member

    I'm having a relapse. It feels like a major case of the flu. I'm so sick it just hurts to move. When I first got sick 14 months ago, I'd go to the Dr. and they'd test me or send me to a specialist. First they said I had mono, Then they told me I had CFS after running 1000's of tests on me to look for anything and everything in the book. I just gave up going about 5 months ago. It got embarassing. My Dr, believes I'm sick, but say's there's not much to be done. The only thing they ever found was extremely high EBV titers - which I'm told, doesn't necessarily mean anything and at one point and elevated reumatoid factor (which dropped later). I've been seeing a great naturalpath/chiropracter once a month but he's in Chicago (12hrs away) and I'm in Northern Minnesota. (He has a whole other opinion of what's wrong with me and says I won't get better without regular treatment). It's so confusing to have mixed messages coming from Dr's. I know I'm really sick, something must be wrong. How do I know I'm sick enough to go back to the Dr. and not be told nothing's wrong - I don't have a fever, but I've come close to passing out a couple times today - and I have passed out before.

    EZBRUZR New Member

    upnorth,maybe if you address madwolf,sujay,ac77,klutzo,jellybelly in you title,they could advise,i never know either.hope U find answer soon. peace,ez
  3. elaine_p

    elaine_p New Member

    Actually, I think they should be able to test you to determine whether your EBV is a current infection. But that's really not important.

    Before I found this site I too thought there wasn't much to be done. There were so many things to be tried that I didn't know where to start. And aside from some obscure info (Rnase-L pathway?) and the antiviral info, it didn't seem like anything new had been discovered. I'd given my doc some info last year about using antivirals, and I finally started on them this year. Since coming to this site I've found info on about a gazillion different treatments.

    There are antivirals. There are antibiotics to fight mycoplasma infections. There's treatment for hypercoagulation. There are digestive enzymes (which I stumbled onto myself last year) as well as changes in diet, since so many of us have food sensitivies and malabsorption problems. There's possibly help for the unrefreshing sleep. And a whole bunch more.

    I don't know that I've seen any posts here or in the Library about the antivirals. (I may not have paid enough attention, since I was already on the protocol.) But if you do a message search for PatPalmer, she's posted some great info on Olive Leaf Extract (OLE), which is a natural anti-viral. Also look for her posts on on Cytolog. (Not sure what it's for, but I've printed the articles. It sounds great.)

    For info on mycoplasma, you can do a Library search. There are several articles and I can't find the "best" one right now. And for a patient's story about antibiotic therapy, do a message search for "LIKE A MIRACLE! Conquering Autoimmune Disease" posted by jellybelly (you don't need to enter the complete title).

    For info on hypercoagulation do a Library search. Look for the article, "Hypercoagulation Theory Viable Explanation for Some CFS & FMS Symptoms" by David Berg.

    In the Library, also look for "Dr. Cheney's Basic Treatment Plan for Chronic Fatigue Syndrome". Also look for the article "Dr. Paul Cheney Discusses the Benefits of Klonopin". (I found the last by searching on klonopin.) And look for the Dr. Cheney article on "undenatured whey protein".

    And, there's something called Transfer Factor which I don't know much about. There's a Transfer Factor message board here, if you have questions.

    Hope I didn't overwhelm you with information. You'd likely find out about these things on your own, as I did. (Personally, if some guy's saying you need to make a 24-hour round trip on a regular basis, I'd string him up. Not really, but I think that's ridiculous. And there's probably someone a lot closer who can help you just as much.)

    Hope you find some helpful information on this board, even if it's not from me! :)

    Forgot to say that any of the stuff that you really want to try, give it to your doctor to read. (You're lucky in that your doc believes you have CFS. Maybe he's willing to be educated.) Maybe mail it a couple weeks before your appointment and try not to overwhelm him with too much info at once, especially since it's best to try one thing for a couple weeks before starting something else.

    If you need to travel, can't you find a good specialist in the Twin Cities? It's a lot closer than Chicago. Heck even Montreal looks closer! (I looked in my atlas since I live next door to you and was confused about where Chicago actually was in relation to Minn/St Paul.)
    [This Message was Edited on 08/05/2003]
  4. atrinigyal29

    atrinigyal29 New Member

    I'm so sorry that you are suffering and in pain. It's so frustrating not knowing exactly what is wrong with you. It's also frustrating going from doctor to doctor and have them tell you nothing is wrong. You know your body...no one knows it as well as you do, and you know that there's something wrong. My situation was similar to yours before I was diagnosed with fibromyalgia.

    I went from doctor to doctor, most of them telling me that nothing was wrong with me. I tried the "natural, wholistic route" but acupuncture and change in diet did not work. I was also misdiagnosed a few times. Finally, I found a doctor who truly listened to me. With his help (based on my symptoms he referred me to different specialists), I found a rheumotologist who diagnosed me with fibro. He placed me on the medication Elavil, which helped to relieve the symptoms somewhat. They were not as intense and there were days where I would feel somewhat like my old healthy self.

    I did not feel comfortable with my rheumotologist because he did not seem to know much about my illness. I searched and researched until I found another rheumotologist who is much more knowledgeable and seems very genuine with regards to trying to help me.

    I guess what I'm trying to say is don't give up just yet. It may be a long and difficult process finding the right doctor, but there are doctors who truly care and are willing to listen to their patients. You can post another message here to ask about good doctors in your area. Most likely someone can suggest a doctor for you. Also, what does your naturalpath/chiropractor say is wrong with you? Has he/she been able to help you?

    Anyway, I hope you find a good doctor soon and get some relief. Please keep in touch and let us know how you are doing. Take care.
    [This Message was Edited on 08/04/2003]
  5. upnorth

    upnorth New Member

    Atrinigyl, elaine,
    Thanks for replying to my message. Sometimes when I feel realy sick, I just can't believe nothing can be done, I feel like I should run to the Dr. and get cured. Thanks for all the advice. I think I have a virus, my naturalpath/chiropracter says I have a virus, parasite and adrenal fatigue as well as other stuff, but these are the worst and at the root of my problem. I'm on an anti-viral (which i just started), anti parasite, digestive enzymes, liver d-tox, adrenal support... He's (the Dr.) actually my really good friend Amy's friend and is treating me because he wants me to get better and has even offered for me to come live with him and his wife in Chicago where he can see me more than once a month (this is an offer as a friend, not a Dr). As to a naturalpath in my area, I've tried and it's still at least an hour drive and there's not many options...I only found a Chiropracter who I didn't especially like. I'm really out in the boonies - the reason I ended up in Chicago is my best friend lives there and everytime I'm so sick I can't work, i go there to try to rest. I'm going down for a month (August). I'm going to stay some with the naturalpath and some with my best friend. (weird, but anything's worth a try at this point) My Dr. says it will take more than a month but that we can make some progress. He was hoping once a month would help and all the supplements, but he says I'm just too sick and neeed a little more help. I wouldn't trust him except not only is he a really great guy, but he's Amy's friend and is getting practically nothing out of it for himself except to see me better. He said if it were Amy sick, he'd have her down there and he would be doing everything to get her better. I just get desperate sometimes (like last night). Thankfully, I'm not really in pain like a lot of folks here - I can't imagine - I just feel like my body is shrivelling up from sickness - like the worst case of the flu ever. Thanks again.
  6. elaine_p

    elaine_p New Member

    cool, the chiropractor sounds like a nice guy!

    Adrenal fatigue has also been mentioned here a few times. I believe it's a component, but so what if I take care of it, will I get refreshing sleep? (I haven't researched it much, but am gradually doing what I can to at least not burn out my adrenals. Also, a lot of evidence is piling up about the HPA-axis.)

    In case you weren't told, antiviral treatments can make you feel worse at first. And you can feel worse whenever you have die-off (a herxheimer reaction). That's supposed to be an indication that it's working. Something else that is supposed to be "used" in antiviral/abx therapy is "pulsing". I haven't mentioned it to my doctor yet, but I'm not at the 6-month mark yet which is when you're supposed to start. (I *think* you go off all of those things to allow your immune system to take over and strengthen itself. But I don't know how long for.)

    FYI - I started Klonopin yesterday and boy, did it work great! I fell asleep in about 20 minutes (I'm lucky if I can do it in under an hour) and slept for 10 hours! My morning dose today was too high, but I have high hopes for it.

    Oh, another thing people have had lots of success with is guafenesin (sp?). Yep, the stuff that's in cough syrup. If you want to try it, you really need to read the book by Dr. St. Armand. You need to avoid salicylates when you're on it. I haven't tried it yet because I still smoke.

    Good luck in Chicago!