Antibiotic treatment

Discussion in 'Fibromyalgia Main Forum' started by moab341, Mar 18, 2007.

  1. moab341

    moab341 New Member

    I am doing a lot of research into different treatments and the one thing I'm sure of is that I want to be PRO-ACTIVE.
    I have tested positive in an ANA and RNP blood tests so autoimmue disease such as Mixed Connective Tissue disease or Lupus is possible as well as the FM.

    There is info on the internet of the antibiotic treaments people have had and how they've gotten their lives and health back when they were so sick they had almost given up.


    There are books on this that I have purchased, and plan to read, but I'd realy like some fedback from those on here who have done some serious research on this or have actually had the treatment themselves.

    I don't think my Rheumy will be up for it if I suggest it, but I don't know yet...I have not talked to him about it. This is all pretty new to me, but I am not going to wait until I'm incapacitated or have to go on steroids that will damage my organs.

    I want options..better yet, I don't want to treat symptoms, I want to get better.

    Anyone that has knowledge on this..please, I would love to hear from you. I wish good health, and free from pain lives for us all. Roni



  2. GoWest

    GoWest New Member

    Roni,
    I am one of many who improved on antibiotics. I know I have mycoplasmas and also borrelia or Lyme disease. But my original symptoms were cfs.

    You might want to research information at the following websites:

    http://www.rheumatic.org

    and

    http://www.Cpnhelp.org
  3. clerty

    clerty New Member

    I feel great for about a month then back to the horrible way before there is something in that!!!
    Clertyx
  4. Mikie

    Mikie Moderator

    For 2 1/2 years, pulsing them later on. My illnesses were triggered full blown by a mycoplasma infection. At the time, no one knew that it takes a full six months on the ABX to clear up a myco infection and mine went chronic in my body. I was never the same after that.

    The ABX have helped, as have antivirals, but I do not see them as a cure, at least not in my case. Still, I do not believe we can achieve healing unless we address the chronic infections and the hypercoagulation which usually accompanies them.

    Love, Mikie
  5. moab341

    moab341 New Member

    As for the the infections....how do you treat them?
    Isn't that part of what the antibiotic treatment it for?

    Do you think I'd get a Dr. to do the treatments on me for the Mixed Connective Tissue Disease, since I haven't actually been diagnosed yet?

    My Rheumy says I need 4 out of the 11 symptoms to be diagnosed, but how can he tell what's FM and MCTD?
    How do we even know that I have FM and it's not the beginnings of the MCTD?

    What I don't like is how they want to wait until your symptoms are terrible before they'll treat you.
    I mean....can it hurt for them to do the antibiotic treatment and see if symptoms improve and possibly ward off the really bad ones?

    What have you been diagnosed with Mikie?

  6. moab341

    moab341 New Member

    I have begun taking pro-biotics and vitamin/mineral supplements.
    Is there anything I should steer clear of? ( I saw Mikie Say Mint in another post)

    I've noticed some cramping and wonder if that's normal while getting my gut back to normal?

  7. Mikie

    Mikie Moderator

    I wish I could be of more help to you. One of the biggest problems we have is the patchwork protocols for diagnosing and treating us. If one cannot afford to go to one of the FFC's or one of the experts, one has to pretty much do one's own research and find docs willing to go along with the treatment plans. I was lucky in that I found several good docs who worked with me. It took years for me to find the treatments and try them.

    What has helped me the most is the antibiotics, antivirals, transfer factors, and my zapper to address the infections. My infections seem to be under control. I am getting better but it's been slow going.

    It can be very difficult to distinguish between symptoms when we suffer more than one condition (most of us do). There is a lot of overlap and this can make it difficult to know if a treatment is working.

    The FFC's and experts run a lot of tests to determine which infections are active/chronic and which treatments to try. All my treatments have been empirical. My ins. won't pay for expensive tests. BTW, I can't have mint because it blocks the Guai which I take for my FMS. The FMS is basically under control but I still suffer from the ME/CFS and continue to take two steps forward and one backward.

    Learn as much as you can about your conditions and look for the best docs you can afford. Best of luck to you.

    Love, Mikie
  8. Mikie

    Mikie Moderator

  9. moab341

    moab341 New Member

    Mikie,

    Thanks so much for the info Mikie.
    Do you have a thread on here explaining what you've been through and what you've been diagnosed with?

    There are so many things to know and try to get straight in your body, it's so very confusing.
    I'm realatively new to this, and I literally wear myself out trying to get ahold of it all.

    What are antivirals? I didn't know there was anything you could take for viruses.

    So.....I need to be tested for viruses, bacteria and I'm sure there's more.
    Now wonder our Docs think we are hypochondriacs, but we are so desparate to get well, we leave no stone unturned.

    There has to be something causing my IBS and stomach issues. I refuse to believe everything is fine just because my gastro Doc can't find the problem. I know how I feel and I'm not crazy....not yet anyway:) Roni


  10. Mikie

    Mikie Moderator

    Somewhere here, I posted my regimen. I'll try to find it for you. Antivirals and transfer factors have been effective in helping us to control chronic viral infections.

    My IBS went away when I started taking the Doxycycline. This leads me to believe that, at least, some IBS is caused by bacteria.

    I'll see whether I can find my old post.

    Love, Mikie
  11. Mikie

    Mikie Moderator

    My Treatment Regimen 10/04/06 02:42 PM

    I am going to post this on its own because we do have a lot of new members. I haven't posted my regimen in a long time. Obviously, I'm not well, yet. I do continue to improve but there are bumps along the road. I never stop looking for new treatment options but I give great consideration to what I will try. I hope this helps.

    As you know, I believe we have to address the infections and hypercoagulation, if present, to be able to achieve healing. I do think treatment can be too aggressive, though. Each of us is different, so we have to be very aware of how we react and, if necessary, talk to our docs about slowing down the treatment. If one suffers the toxic-shock-like reaction, the treatment can make one sicker than the pathogens do. Seems that a lot of the docs who now specialize in our illnesses are really aggressive in treating the infections.

    My treatment played out over time because five to six years ago, very few docs were even aware of stealth chronic infections and fewer still knew how to treat them. I knew from the lab tests way back in 1990 that it was a mycoplasma infection which triggered my illnesses full blown. When I became so sick I could no longer work almost 6 years ago and was bedridden and on Morphine, I decided I had to start researching to find a way to get better. I started by looking up mycoplasmas online.

    I stumbled onto Dr. Nicolson's website. He had a protocol for using antibiotics to treat them. Doxycycline was the first drug of choice. I took the articles to my PCP, highlighted and annotated, and asked him for the Doxy. He was a great doc. He admitted he knew next to nothing about CFIDS/FMS but was willing to learn and appreciated everything I brought to him. The third day on the Doxy, I had a Herxheimer reaction. I Herx hard and fast for 24-48 hours with a headache, profuse foul sweating, nausea, and diarrhea from hell. Following that, I feel better.

    At that time, no one knew how long one had to stay on the ABX before trying to pulse them. Since then, the protocol has been refined. Patients now take the ABX for a full six months before trying to pulse. It's all trial and error depending on how long one can go without the ABX and without the symptoms' returning. All in all, it took 2 1/2 years before I was able to go off the Doxy completely. As you know, though, I still keep the Doxy around just in case I get sick and run down and the mycoplasmas try to reactivate. It was Dr. Nicolson himself who told me in an e-mail that they have found mycoplasma cysts deep in body tissue lying dormant. They can reactivate.

    It was a fluke that I found I obviously had some kind of chronic stealth viral infection(s). I had to take Famvir prior to facial surgery as a preventive. I went into a complete, but temporary, remission. Again, my PCP and I decided I should be on the Famvir. I took it for about 1 1/2 years, pulsing toward the end. I now keep acyclovir on hand in case my viral infections try to reactivate. I cannot afford the Famvir now.

    You're probably wondering how I know which type of infection is trying to reactivate. It's fairly simple. If I start running a low-grade temperature, sweating and feeling hot, it's the mycoplasmas. If I feel as though I'm getting the flu and chilling, it's likely the virus(es). When I Herx from dying bacteria, my torso burns; when I Herx from dying viruses, my torso chills. From time to time, when one type reactivates, the other does too and I end up taking both ABX and the AV. My treatments did overlap for a time in the beginning and I was taking the Doxy and Famvir at the same time with no problems.

    About this time, I read about Dr. Joseph Brewer's protocol from a member who was here. She is a physician and was very interested in the hypercoagulation. Dr. Brewer is big on the transfer factors and Heparin. I typed up a treatment plan for the specialist I had been lucky enough to find. I would start the TF's and Heparin. I think I tried the TF's first and had such a strong immune reaction that I could only sprinkle some of the powder under my tongue each day. It was a month before I could tolerate a whole capsule. I took the TF C and TF 200 sold here. Between them, they targeted most of the suspected pathogens except mycoplasmas, which I had under control. I took the TF's for 3 months and then started pulsing them for a couple of days every 6 weeks. I still do this and still Herx each time.

    When I started the Heparin injections, I again had a strong immune reaction, the strongest I have ever experienced. I was taking 5,000 IU's twice a day. The protocol called for six months of injections. After about 2 1/2 months, I started bleeding at the injection sites and my doc and I decided to call it quits. My SED rate results indicate that the hypercoagulation has not returned.

    During the time I was taking meds, I read about the zappers here and did some research on them. I became convinced that I had nothing, except my $150, to lose and everything to gain by using one. I still use my zapper when something tries to reactivate. I really probably should use it every day.

    I have been taking probiotics for years and I added colostrum and undenatured whey, sold here. These things help the immune system to grow stronger.

    When I started this treatment regimen, there were no guidelines because no one had been doing this cutting-edge stuff long enough. Dr. Brewer's and Dr. Nicolson's info were a huge help to me and my docs. Today, these treatments are entering mainstream medicine as specialists in our illnesses develop treatment plans for their patients. I am in an HMO and there is zero possibility they would pay for the expensive PCR DNA tests to identify pathogens. I also doubt they would pay for the HEMEX Lab tests for hypercoagulation. We used the time-honored empirical method and it worked just fine. With the right doc(s), one can do this on the cheap.

    I am not a medical professional but I have been through the rough times of Herxing and being very sick with immune reactions. I think it is wise to take things slowly at first. One can always speed things up and get more aggressive later down the road. Some of these treatments require years, or possibly a lifetime, to get control over our infections. Neither we nor our docs should expect too much too soon. Of course, it is up to each patient and her doc to decide. I offer only my own opinions based on my experience.

    Love, Mikie
  12. Mikie

    Mikie Moderator

    My responses keep rolling over and getting lost so I'm bumping it for you. I'm in a bad flare from a Red Tide outbreak and have not been online much.

    Love, Mikie
  13. moab341

    moab341 New Member

    I am so sorry you are in a bad flare. They are awful.
    I'm just ocming out of one and it almost put me over the edge along with trying to find out if I have an autoimmune disease.
    The tests are very inconclusive, but it's possible and that scares me to death.

    I am going to see my Rheumy tomorrow, so I will talk to him about all this, but he has a way of looking at me like I'm crazy because right now I am lashing out with a million questions and am all over the board with my emotions.

    All this info is coming so fast and there's so much of it.

    Thanks so much.......take care of you! Roni
  14. monicaz49

    monicaz49 New Member

    I just started antibiotics as i have suspected lyme disease. We'll see how it goes but i hear its a long hard road.
  15. munch1958

    munch1958 Member

    My doctor wouldn't do the Marshall Protocol but he would prescribe Minocycline per the Roadback Foundation Protocol.

    http://www.roadback.org/

    I've seen very positive results with no side effects from Minocin.
  16. Banka8

    Banka8 New Member

    Marshall Protocol is the only effective way to get rid of the cell wall deficient bacteria. It's a long process but it is worth it. Other treatments may provide temporary relief but the root cause of our disease is not addressed.

    Our 1-25D levels are too high and when that happens innate immunity is surpressed. Benicar and the antibiotics used in the Marshall Protocol return innate immunity and kill off bacteria. These bacteria want to survive and they have figured out a very effective way of doing it by messing with out innate immuity. We all need vitamin D but at high levels it is not good. When our immune system is working properly our bodies will be able to get rid of other co-infections from viruses and yeast as well as bacteria.

    Most Rheumy doctors are not interested in the Marshall Protocol. They have an old stale standard of care regime. You will have to have a doctor smart enough to see the perfect logic in the Marshall Protocol.

    I got relief from my sore feet and knee after about a month on the MP using Benicar alone. As the bacteria are being killed you will feel tempory aches and pain and then a gradual lessing of symptoms.

    Hope this helps.
    Judy
  17. zipk

    zipk New Member

    Hi Banka:

    I'm so glad to hear you are making progress on the MP. I'm in IL as well. Any chance you could share your doctor's name? Or some way to do so privately?

    Thanks,
    Zip
  18. Banka8

    Banka8 New Member

    I'd be happy to talk to you about the Marshall Protocol. You can private message me on the Marshall Protocol website. My name is JudyBeauty there. There are tons of people to talk to and everyone is more than willing to answer questions about the Marshall Protocol experience.

    Take care

    Judy
  19. clerty

    clerty New Member

    If you take a course and you feel better then does that not say that there is an infetion somewhere!!!

    clertyx
  20. moab341

    moab341 New Member

    Well, I have been reading about all this and I'm still confused. Maybe it's meant to be confusing.

    Is the MP to get rid of Vitamin D?

    Why then are there so many on here singing it's praises and how it's helped them?

    What is this 125 D?

    I have to go see my Rheumy today and I'm trying to get my questions in line.
    I could use some help here!!! Thanks, Roni