Madwolf, Need Your Opinion, Please

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Apr 9, 2003.

  1. Mikie

    Mikie Moderator

    As you know, I have found a very good physiatrist who is very knowledgeable about FMS and also treats CFIDS, but I don't think he's as "on the cutting edge" when it comes to CFIDS.

    No one has ever done screening tests for viruses like HHV-6, CMV, or for chronic fungal infections. I asked this doc whether he does this and he said, "No, I wouldn't do it in your case because it wouldn't change the way we would treat you." Now, I notice that a lot of the experts in CFIDS do these tests and, in the case of viral infections, use anti-viral meds like Kutapressin.

    What are your feelings about this? Do you do this type testing in CFIDS? Have you used drugs like Kutapressin? If so, what have been the results?

    Thanks for your time and opinion, which I value. I know I've asked a lot of questions here, but I am not satisfied with his answer.

    Love, Mikie
  2. Mikie

    Mikie Moderator

    Just bumping for poor old overworked and tired Madwolf.

    I feel guilty adding to your workload, but this is important to me. Thanks.

    Love, Mikie
  3. lucky

    lucky New Member

    Interesting subject. Here I was treated for candidas and thought I had IBS because of it and was treated for months with antifungal meds. To my biggest surprise I got diagnosed by a specialist today that the scan shows that I have diverticulitis. Why I mention it to you is that IBS in CFS/FMS is not abnormal, but you can see how wrong one can be. Since I started feeling great taking Nizoral for months, I was sure that I had candidas and the med helped the abdominal pain for a while, but I have been feeling really ill and very fatigued since I had to stop this med switching to Nystatin.
    And I am like Mikie in that I do not give in before I have the answers, having CFS and FMS. And....I do not like to think, but agree with you on a seperate posting, that one might end up with Lupus or other autoimmune diseases. It unfortunately keeps my thoughts going.
    Take care, Lucky

    Sorry, if I budded in, but thought it might be of interest.
    [This Message was Edited on 04/09/2003]
  4. lucky

    lucky New Member

    I have heard about Kutapressin, but what excactly is it and for what are you taking it?
    Thanks for your reply. Lucky
  5. Mikie

    Mikie Moderator

    Actually, this is my physiatrist who is not a shrink but a doc who is like a physical therapist with an M.D. He is very good with FMS. I think the stealth virus problems are really more prone to cause the symptoms of CFIDS, although, I do believe both FMS and CFIDS are different manifestations of the same illness.

    I do get cold sores when I am run down. When the Red Tide was at its worst, I got one. In preparation for my little nip 'n tuck surgery, I have to start Famvir the day before and take it for a week. There is a big danger for spreading the Herpes virus in facial surgery if one has a cold sore, especially if the surgical site is near the eyes. The Herpes virus can make one go blind if it gets into the eye.

    I am looking forward to taking this stuff, because if it makes me feel a lot better, it may be a clue that I need to pursue the stealth virus thing a little further. I no longer have IBS; the Doxycycline got rid of it which makes me thing that IBS, like ulcers, may be caused by bacteria. I think using the zapper gets rid of viruses which have not burrowed into cells or which are in the blood stream looking for new cells to invade. It also gets rid of fungi; however, it can't touch anything in the gut. I do take the probiotics, enzymes, and I don't eat very much in the way of carbs anymore.

    I think that the Kutapressin is an immune modulator and balances the T1 and T2 sides of the immune system in addition to being a wide-spectrum anti-viral medication. It is made from pig livers. Since so many of the stealth viruses which can make us sick belong to the Herpes family, hopefully, the Famvir will give me some kind of indication. Of course, I will continue with the zapper to keep infection down too.

    Love, Mikie
  6. klutzo

    klutzo New Member

    I'd just like to say that I got rid of my IBS simply by going on a high protein/low carb diet. Within 2 weeks the IBS that I had suffered with for 29 yrs. was gone!
    My point is that our IBS can be caused by many different variables.
  7. Mikie

    Mikie Moderator

    I just read that on the CCF. I am so glad that the diet alone did this for you. Sometimes, Leaky Gut leads to food allergies which lead to IBS. By simply eliminating the offending food will clear it up.

    Not all ulcers are evidently caused by bacteria either, but a number of cases have responded to antibiotic therapy. I think the same is true for IBS. Yes, it can be caused by a number of things.

    Love, Mikie
  8. lucky

    lucky New Member

    I like to get some feedback from both of you if diverticulitis is caused by IBS, and if you have any experience with treatments, etc.
    As I mentioned, I was diagnosed with it yesterday and therefore also ask if Kutapressin would be the right med to treat also the chronic sinus and other infections as well. I have not been diagnosed with any viruses, except the EBV years ago.
    I am amazed that new symptoms creep up all the time, and it is really difficult to keep up with them, so I like to get as much info as I can get. Thanks to both of you, Lucky

  9. lucky

    lucky New Member

    Spacee, for your detailed info on Kutapressin. I have not been diagnosed and should also been tested for the HV6 virus which my doctor seems to shy away from. He, however, did a test on Mycroplasma again, and we are waiting for the results.
    I had EBV in 1988 and never felt the same after, however, a test a few years ago showed that everything was normal.I was interested also to find out whether this med would be useful in treating viral and bacterial infections, which come and go with CFS/FMS.
    Thanks for your reply, and I will try to do more research on the drug as well. Lucky
  10. Mikie

    Mikie Moderator

    I think it's important to test for stealth viral infections before considering the Kutapressin treatment but I do know that some of the experts in the treatment of CFIDS have had some success with it. There are other anti-viral meds which are being used. I think some of the value of using Kutapressin is in it's immune system modulating properties.

    Diverticulitis is inflammation of the diverticula in the colon. Diverticula are little pockets in the wall of the colon. Foods like seeds can get stuck in them and putrify causing the inflammation. Changes in diet are helpful.

    My Mom had this and just the cleansing prior to her colonoscopy helped. The doc also cleaned out the diverticula and sent the material into the lab for analysis.

    Love, Mikie
  11. layinglow

    layinglow New Member

    Spacee and I have corresponded at great length about Kutapressin. She's the Kuta/B12 Guru :) I have done lots of research on it, and thought I might like to give it a try, as Dr. Elander was having such great success with it. After talking with my FM/CFS Specialist---He told me it has worked best in his patients that had a VIRAL onset of CFS, and in conjunction with B-12 Therapy.

    We opted to try the B-12 Therapy (injections at home) since I did not have a viral onset to either FM or CFS. See how I do there....he said I could give the Kutapressin a go, anytime, if I wanted to....

  12. Mikie

    Mikie Moderator

    My illnesses were triggered by the mycoplasma bacterium or bacteria. We are so prone to infections of opportunity, including viral infections, that I have wondered about using an anti-viral medication. Guess I'll see how I do on the Famvir. Maybe it will give me a clue.

    My PCP said unless blood tests show low levels of B-12, my insurance company will not pay for them. Of course, mine came back "normal."

    Love, Mikie
  13. lucky

    lucky New Member

    for your reply. Meanwhile, I saw my family doctor yesterday and discussed quite a few things with him. Again, I am lucky to be in good hands with doctors and specialists here who are familiar with CFS, however, as you know the treatment choices are as limited as anywhere else.
    Although I had many tests done years ago to eliminate other illnesses like Lupus, or Lyme etc., I was asking being retested.
    The reason, I start to believe now that all of a sudden new symptoms like the diverticulitis and severe heel pain show up, which I tend to believe are all caused by something else than just coincidence. I need more tests for the diverticulitis - but meanwhile I am on 2 meds, one antibiotic and one antibacterial, and this antibiotic is not a good one re candidas. I am taking Nystatin with it to hopefully avoid this. Also, I will be retested for Lupus and other bacterias and am waiting for my Mycoplasma test results.
    My biggest support and I am very happy about this, is my family doctor who has become much more aware and knowledgeable in treating me, but I also did a lot of ground work and still do in getting as much info as I can about these illnesses, and this board provides the best infos and support you can get. As you, I am a firm believer that the more one knows the easier it is to manage these dd's.
    Thank you again for your concern and reply. Lucky
    [This Message was Edited on 04/11/2003]
    [This Message was Edited on 04/11/2003]