My CFS/FMS Symptoms Are Gone

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Apr 25, 2003.

  1. Mikie

    Mikie Moderator

    OK, y'all, first, I want to thank everyone for all your prayers and sweet messages regarding my surgery. I've gone into all the gory details in the post where kayl (Karen) asked if anyone had heard from me.

    What has been so strange is that despite the usual post-surgery discomfort, including the complication, my CFS and FMS symptoms are gone. I can get down on the floor without stiffness or pain, in fact, I have no FMS pain. I am alert and have all kinds of energy. Since Wed., I have been out to lunch and shopping with my daughter. I just hope it keeps up.

    I think the most probable reason for this is that I have been a week on both the Doxycycline and Famvir, an antiviral drug for Herpes-family viruses. I think I may have a chronic stealth Herpes infection, probably either EBV or HHV-6.

    A couple of other things have occured to me too. I spent 2 1/2 hours with oxygen going up my nose, and this may have helped to kill off more pathogens, but I haven't had a Herx.

    It may also be that now that I have "real" pain as opposed to the "phantom" pain caused by Substance P, my brain is dealing with the "real" pain and not recognizing the "phantom" pain. The brain may "know" that it needs to be dealing with my surgical healing and has stopped overreacting in the immune system.

    Anybody got any guesses? I plan to discuss this with my new specialist on Tues. I just hope this keeps up.

    Love, Mikie
  2. pam_d

    pam_d New Member

    ...but I'm so glad for you, & keeping my fingers crossed that it continues!! Let us know what you find out Tuesday----could lead to some clues for others here. Just glad you feel better & can concentrate on healing from your surgery!!

  3. CelticLadee

    CelticLadee New Member

    Glad your back Mikie and so happy to hear you are having a reprieve from CFS/FM symptoms. I also hope it lasts.

    I found your post very interesting. I don't have any answers for you but I did want to share one thing. When I was hospitalized last July for what they thought was a heart attack but ended up being "acute pericarditis" (maybe) which I now know was CFS... Said all that to say... I was also on oxygen for more than 24 hours and I believe it took away my symptoms. The next two days in the hospital I was feeling very very good but later when I was home the symptoms came raging back with added ones. Not to say that is what will happen to you but I believe the oxygen did help me out for a short time. Bear in mind this was all at the onset of CFS so we didn't know what was going on at the time. In hindsight I see the benefits of my hospital stay. Lots of rest & 3 square meals (heart diet - low fat/no caffiene), etc. along with the oxygen it was just the ticket.

    Anyway, I have missed your posts and am glad to hear you are doing so well. CLD

    LOL. Forgot to mention that I do have the herpes zoster virus active in my body also & had no antibiotics. Also Day 2 they gave me a shot in the stomach of blood thinner (Heparin?) as they mistakenly read my heart MRI and believed I had a blocked artery. Maybe the heparin was the reliever more than the oxygen??? Do you suppose?[This Message was Edited on 04/25/2003]
  4. ReallyTired

    ReallyTired New Member

    Great news Mikie! I had a similar reaction occur with me. I’ve had herpes simplex 2 for nearly 23 years. I don't get many out breaks anymore but when I feel one coming, I take Valtrax (anti-viral), which happens to relieve my CFIDS symptoms. Could there be a link here??? I told my doctor about it but he had little comment. My symptoms always return once I have completed an 8-day treatment. Could we be on to something? I would really like to hear from others and see if there is any correlation with anti-viral type drugs.

    Regards, Reallytired…
  5. Mikie

    Mikie Moderator

    Jelly, I guess we can assume that I do not suffer from hypercoagulation :)

    ReallyTired, Dr. Cheney has found a very high percent of his CFIDS patients with HHV-6 infections. Viruses are even more sophisticated than bacteria at going stealth in the body. In fact, viruses can infect bacteria. They use both RNA and DNA to trick the immune system, according to what I have read.

    Researchers have also found a high percent of AIDS patients are infected with HHV-6 and believe that it is the HHV-6 virus, rather than the HIV virus, which causes the majority of the symptoms of AIDS. People with CFIDS resemble AIDS patients in the last months of their lives.

    I'm very interested in how those on the Kutapressin treatment fare. It will also be interesting to see what happens when my cycle of the Famvir is ended. I do believe that those of us with CFIDS have to clear up our stealth chronic infections or we cannot heal.

    Love, Mikie
  6. Mikie

    Mikie Moderator

    I guess this is a fairly rare complication. All the blood vessels are watched to ensure they clot where cut. Every once in a while, one will clot, only to start to hemmorhage later. The worst part was having to try to wash all that blood out of my matted hair, which was under the bandages. Yikes! The next day, they removed the bandages and I was able to shower. No shower has ever felt sooooooo good in my life.

    What we do for vanity :)

    Love, Mikie
  7. klutzo

    klutzo New Member

    Very glad to see you survived, but that's a heck of a way to get relief from FMS/CFS! There's got to be an easier way.
  8. Mikie

    Mikie Moderator

    Jelly, guess that was just toooooo much information :)

    Love, Mikie
  9. stillafreemind

    stillafreemind New Member

    I am no light weight..BUT, when I ead your other post about what you went through..I gotta say I got a little weak in the knees!

    You go girl..I cannot wait to hear about the end results. I am sooo glad that you are feeling so good..nice little bonus, huh?

    Take good care and glad to see you posting again! ...Sherry
  10. layinglow

    layinglow New Member

    Mikie so glad you are feeling so much better! Here is an article I thought you might be interested in. It has to do with HHV, Patients with CFS, and Kutapressin Therapy. Some Studies have shown 75%-85% patients benefitting after injections. I discussed this with Spacee for quite sometime....she is a good source of info. After speaking with my Doc, he said in his practice he has had the best results with those who had a viral onset to CFS. I have gone on the B12 injections that is part of the therapy, and may go to Kuta. in the future...


    Many people with Chronic Fatigue Syndrome have been tested for HHV6A and found to be positive. HHV6A stands for Human Herpes Virus Number 6A. The test for HHV6A is now commercially available through Herpesvirus Diagnostics Inc. (Physicians may call [414] 529-3680.)

    HHV6A is a persistant and infectious virus that can't yet be totally eradicated from the body. The strain GS is the one usually found in PWCs (Person with Chronic Fatigue Syndrome) as well as in AIDS and other illnesses. Ampligen helps inhibit the virus but is not yet accessible to most people.

    Another drug that inhibits this strain is Kutapressin. Kutapressin was found helpful to PWCs in 1988 when two Houston physicians, Drs. Thomas Steinbach and William Hermann, began a therapy with PWCs using intramuscular injections which were slowly reduced in frequency until just one injection per week were used. The origional protocol is daily IM shots of 2ml for 25 days, then three times weekly for up to six months, and then just 1 time a week. Dr. Steinbach uses a 23-gauge 1-inch needle and combines this with a Vitamin B12 shot.

    Manufactured by Schwartz Pharma in Illinois, Kutapressin is an amino acid and peptide extract from pig's liver. Most insurance companies will cover the prescription drug. An informal study of 270 PWCs showed 75% benefiting after 40 injections, and all had been sick for more than five years. A second study, previously published, showed an 85% symptom reduction. There was also a study by Dr. C.V. Abalashi that found Kutapressin helped in vitro (in a test tube) to inhibit HHV6 (In Vivo, 1994).

    Dr. Derek Enlander treats over 800 PWVs in New York City. He has modified the Houston protocol to weekly injections and found a similar benefit for these PWCs. Only two PWCs out of these 800 have ever demonstrated a significant allergic response to the drug. Many, however, do experience soreness where the injection site is, and he claims to minimize this by using a 30-gauge, 1-inch needle. He combines Kutapressin with magnesium, sulfate, Calphosan, B12, and folic acid. The method alleviates the flu-like symptoms and sore throats associated with CFIDS but, like Ampligen, works very slowly. The benefits are gradual and usually will be noticeable between 8 and 12 weeks. The drug also had been found to expand the time between flares, and the relapsing episodes last a shorter time.

    To use Dr. Enlander's method, a compounding pharmacist must prepare the injections, which should be refrigerated. The solution, however, should be brought to room temperature before being injected. It should always be clear in color, with no clouding or discoloring seen.

    Kutapressin costs between $90 and $120 for a 20-ml vial. One vial usually produces 10 shots. Although your "traditional physician" may be reluctant to try this method, a resulting HHV6A test should make him/her more amenable to the drug. It has been used for many years for skin conditions and is considered very safe.

    This article was written by Robert Huntington. (The National Forum, Spring 1998)

  11. Bacci

    Bacci New Member

    Just wondering if you got some of that info on herpes family viruses from the book, "The Virus Within"? If not, it is a great, informative book that gives insight to the potential of a number of herpes viruses (esp HHV 6) causing CFIDS, AIDS, and MS. Also it's very interesting to see the politics behind why this avenue is not explored by many researchers even though there is seemingly more evidence to support it than anything else out there. I have had a number of viruses in the herpes family and still always wonder if part of the answer lies there. Also, what exactly is a herx reaction? Seen it a few times but not heard of it. Glad to hear you are having such a good week. I often wish to just have a day of being "normal" (as much as that is possible:) and energetic, since i have totally forgotten what that feels like! It would be a nice reprieve to remind my body of where it should be.

    Hope all continues to go well for you,
  12. amy987

    amy987 New Member

    i dont know if this is appropriate.. but here goes... ur so goddamn lucky! hahaha and im so happy for u, and i really hope that it keeps up!

    best wishes
  13. Mikie

    Mikie Moderator

    Thanks so much for this info. I will be taking it to my new doc on Tues. I really appreciate your taking the time to post it. It sounds very promising.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    Yes, I did read "The Virus Within," and I have read other info on this family of viruses which is suspected of causing us lots of problems.

    My pharmacist told me he is seeing about 100-fold increase in Shingles right now. Shingles is a Herpes-family virus reactivated and it can come back just as mono can despite the fact that most docs used to tell people it wouldn't.

    Love, Mikie
  15. Mikie

    Mikie Moderator

    Thanks, guys, for your good wishes. Yes, I feel very fortunate right now, but who knows how long this reprieve will last. I'm trying my darndest to identify what is the cause of it so that maybe I can heal. In the meantime, I'm enjoying it while it lasts.

    The face gets better every day, but it'll be weeks before I look decent again. Wealthy women go to spas for three weeks following plastic surgery where they are pampered. Geez, I've rested when I needed to, but I feel so damned good that I want to be out and about. Only one woman stared rudely at me in a restaurant when she didn't know I could see her.

    Love, Mikie
  16. Mikie

    Mikie Moderator

    Yes, shingles are part of the Herpes family of viruses, and you can get them more than once. It is really important to keep the stress down and build up the immune system. I mentioned above that my pharmacist has seen a HUGE increase in shingles of late. I wonder whether the Red Tide which has made so many of us sick is the culprit in overwhelming our systems, allowing people to have their shingles reactivated.

    Prior to my surgery, one of my feet hurt in the heel area whenever I walked, especially after I had been sitting and first thing in the morning. I now do not have that. Also, I could never squat down or get up off the floor easily. I was stiff and sore. My body now feels like the athletic, smooth-moving body I once had. Even my daughter noticed the difference.

    I'm leaning toward the chronic viral infection as the cause of my ongoing CFIDS, along with the chronic mycoplasma infection. My new doc does not treat viral infections, but I plan to try to change that. He needs to get up to speed on this area.

    Love, Mikie
  17. kadywill

    kadywill New Member

    I know exactly what you mean about the FMS pain relief. Whenever I've had surgery or have another health issue going on, my Fibro pain and fatigue disappear until that crisis is over. I've noted this to be true every time! When I broke my foot, I had no Fibro pain, only foot pain. Weird, huh?
    I am so glad you're able to chat with us now. We were concerned!
  18. Solstice

    Solstice New Member

    What a wonderful suprise for you!!!!!

    I am very happy for you. It must be such a relief to feel so good.
    I do hope it continues. If it does not, it might be interesting to try one thing at a time to see if that was what helped. i.e. try just the oxygen to see if that again relieves symptoms. If not, dry the drugs that you took for surgery, etc. Or maybe it was the combo.

    I find the information that Laying Low has provided for us to be fascinating and so encouraging. I am definately going to have my doc test me for this. although, I must have it, cuz I get cold sores frequently. Thanks LL!

    I take B12 shots now, and it has taken me from off the couch all day every day to much more functional. If adding the Kutapressin would help even more, hey I'm all for it.

    I do think, though, that the oxygen, has got to be very healing. I wonder if we all could just use some oxygen each day say, for a half hour or whater, (if that is what helps), or if we would have to use it all of the time???

    I think the wonderful bright people on this board will be the ones to figure out this DD!!!!!! We have more vested interest than the doc's do to figure it out. I hate to say it, but they are making tons of money off of us folks, and it would cut their profits significantly if we had some simple way of being cured!!! That said, I have a wonderful doctor who has been very helpful to me, but alas, he is not very likely to be that motivated to figure this out. Where as WE ARE!

    I find I am getting great vicarious pleasure just thinking about how "normal" and energized you feel right now. And I can't help but fantacize about what my life would be like if I were "normal" again.

    Welcome back!

  19. lucky

    lucky New Member

    By researching Kutapressin also, I believe that it probably is the most promising med treating HV6 infections which many of us have with CFS/FMS. However, where can one get it?
    I just phoned the Hot Line of our Ontario Government and the pharmacist told me that it is not available in Canada which does not surprise me.
    I will check the webpage of the manufacturer, if I find something there.
    But, if anybody has any info on this med, I would very much appreciate hearing from them. Thank You, Lucky
  20. lucky

    lucky New Member

    and thanks for your reply and the name and address of the drugstore. As I see, it does help you, but will it be helpful also for others, because my symptoms are probably much different. I always was able to walk, but it is my fatigue and other symptoms which bother me the most. However, the meds I am taking for these are pretty helpful. My concern is the immunesystem and that's why I thought that Kutapressin would give it a boost. But I was never diagnosed having the HV6 virus, however I had EBV years ago.
    Before I will get in touch with the drugstore, I have to ask my doctor if he would inject it. Knowing him, since this is not approved in Canada, he will not do it (regulations, regulations). I wonder, if I could inject it myself, but never did this in my life. However, I will do anything if my health improves.
    Take care and best wishes, Lucky
    [This Message was Edited on 04/27/2003]