Thoughts and Suggestions - Mycoplasma

Discussion in 'Fibromyalgia Main Forum' started by Ken_in_Michigan, Jul 3, 2011.

  1. Ken_in_Michigan

    Ken_in_Michigan New Member

    First off, Let me give some background. I've been diagnosed with CFS now for roughly 7 years. I've had some better times then others, but have not been ever 'right'. Onset originally was immediately after a required MMR vaccine so I could enter college. Up to that point, I was a healthy individual who never had any severe problems - basically the typical rural healthy&fit farmboy. I kept getting sicker and sicker and barely made it through two semesters of college.

    Back in Dec of 2007 I was tested for and found to have Mycoplasma. Since then, I've been treated for it, but in all honesty, in a erratic and haphazard mannor. Erythromycin, Doxycycline, and most recently zithromax. They may have helped, but I'm really unsure in the long-term. I had seemed to be better last year, but any gains I made were lost when this spring when I had a outbreak of shingles. I was put on Famvir. It eventually cleared up the shingles, but seemed to aggravate the mycoplasma. Mycoplasma was actually better under control with shingles raging and the 'chicken pox bumps' on my arms. Trying the treatments for the mycoplasma after the shingles have resulted in no improvement.

    At this point my doctor(s) seem to not know how to proceed and seem hesitant to try some of the now more recognised-as-needed longer-term treatments for mycoplasma. I'm sorry, but 5 days of IV treatment or 14 day cycles of doxy or azithromycin isn't going to cut it at this point in my opinion considering how I have not responded well to that approach in the past. Thoughts have been thrown around that I should consider the Cheney clinic, or Dr. Lerner. Problem is, from what I understand, those clinics like to start at ground zero and not pick-up on my current treatments. I do not have the $10,000+ to throw around on starting at ground zero paying for tests and such I have already had done.

    Bottom line. I know this is all a gray area, but there has to be a doctor out there fimilliar with treating Mycoplasma that isn't afraid to try treatments to combat it head-on, more along the lines of what Dr. Garth Nicolson in Calif preaches (too bad his group does not see patients outside of studies), but without the absolutely absurd upfront consulting 'fee'. My insurance likely won't cover the doctor himself, I realise that. Paying several hundred or a thousand or two would be do-able. It's likely my insurance would cover the meds and/or treatment, if the doctor was willing to work toward those paramaters not just say 'pay for it all up front, take it or leave it'.

    Any suggestions on any current doctors or clinics around the country that are familiar with treating mycoplasma in a CFS context, but are more rational in working within insurance and other parameters?

    Thank You.
  2. Waynesrhythm

    Waynesrhythm Member

    Hi Ken,

    Sorry to hear about your trevails. I don't feel I can offer too much at this time, except to mention that many Lyme Literate Medical Doctors (LLMDs) consider mycoplasma fermentas to be a co-infection of Lyme and treat it accordingly. I'm not sure if they consider other mycoplasmas as co-infections or not, but I suspect these LLMDs would likely be knowledgable about treating them regardless.

    It seems that no matter how many instances like yours of somebody developing chronic illness following vaccinations, mainstream medicine keeps making the assertions that there's no scientific proof of such, and use that as an absurd excuse to not research and develop programs to make vaccinations safer. Hard for me to comprehend.

    Best Regards, Wayne
  3. Mikie

    Mikie Moderator

    This doc is probably the world's leading researcher in mycoplasma infections. His initial research was in response to Gulf War Illness in which more than 2/3 of those with GWI had chronic mycoplasma infections.

    My CFIDS/ME was triggered full blown by a mycoplasma infection. I lived next to a military facility where soldiers were receiving their vaccines prior to deployment in the first Gulf War. I likely was infected by a soldier with an active infection at the crowded mall where the soldiers, and I, were doing our holiday shopping. Fortunately, a blood test showed antibodies to the mycoplasmas but, at that time, no one knew it takes at least six months of ABX treatments to drive it into latency. Mycloplasmas, like Lyme, can change form and go latent inside our bodies, only to reactivate when we get run down. Having a Herpes-Family Virus reactivate can set the conditions for the mycoplasma infection to rear its ugly head again.

    Check out Dr. Nicolson. I believe he is doing a study presently. He is a very nice man and helped my through e-mails as I was getting my infection under control. I didn't get adequate ABX treatment until I had been sick 11 years. It took 2 1/2 years, pulsing the Doxycycline, to get the mycoplasmas into latency. I'm back on it right now because my Herpes-Family Virus, of unknown strain, has reactivated. Oy! It's always something.

    Good luck to you.

    Love, Mikie
  4. spacee

    spacee Member

    have done probably better than any of us who have been here a long time.

    But thought I should say a little about Targeted Transfer Factors. If they help, they
    help. If they don't, they don't. But you need to give it several months to find out.

    What I have used and the owner of this site has used are the ones by Chisolm Biological
    Labs. Cept, I keep forgetting that they have changed their name to Specialty Products.

    TF2 the Lab says is for CFS but it targets some mycos too.

    TF9 is for Mycos but it targets some viruses too.

    They are somewhere about $150ish a bottle. And have to be mailed cooled so ususally
    sent out on a Monday.

    Start out with one kind of TF about half a capsule under your tongue. Save the other half for the next day.
    Work up to a whole capsule under your tongue (it better than swallowing it on an empty
    stomach). Take it for 3 months, then cut down to Mon, Wed and Fri.

    Start the next kind. Half a capsule, work up to the whole. After 3 months, Tues, Thurs and

    Eventually you till get to using one bottle (total) a month. After that you can take 6 week
    holidays from the TF's.

    I hope this makes sense. Pat at the Lab is really nice 1-803-663-9618 and very helpful
    with info. Some of this opening the capsule and taking half was invented by Mikie.
    Sometimes even half is too much. You can take less. How will you know if it is too much.
    You would feel very viral. Should that happen, cut down.

    I sure hope you find something that helps you!!! (((hugss)))

  5. Mikie

    Mikie Moderator

    At the time I took the Doxy, either I didn't know about TF's for it or it wasn't around then. I did take them for various Herpes-Family Viruses because we don't know which strain I have. I may go back to them as the virus has reared its ugly head again.

    Excess fibrin in the blood of people with chronic infections can provide hiding places for pathogens. It can require taking Lovenox or the enzyme, Nattokinase, to break up the fibrin clots. Hemex Labs used to do the testing for this but it's been a long time since I've seen anything here on it. The Hemex web site had a lot of info on the fibrin problem.

    Love, Mikie
  6. Abdulrahman

    Abdulrahman Member

    Hello Ken,

    I'm 47 years old, and had a Mycoplasma infection of the respiratory system for 16 years. It forced me to study Natural Medicine for 14 years, I'm self taught.

    One strong possibility from my research as to why you ended up with this infection after the MMR inoculation is that Mycoplasma infection of laboratory [ and of course pharmacuetical equipment] can and does occur. Therefore its very possible that your vaccine was contaminated with a strong mycoplasma [ virulent strain] and it was strong enough to establish itself in your body.

    Unfortunately for me, I had always assumed that the cause of my frequent monthly respiratory infections was an external virus and poor immune system; and did not know about Mycoplasma bacteria until 2011. Anyway, if you want to eradicate your Mycoplasma, its best to spend a lot of time on the internet educating yourself; why, because there are very few Doctors who are competent in this type of infection. Believe it or not, but many vetenarians are much more experienced in eradicating this difficult organism from animal populations such as in chicken farms and other animal husbandry.

    For me, I tried the best recommended antibiotics at strong dosages for three weeks, but it only helped partially. I recommend you try the natural track, such as using strong natural antibiotics together in a three month program. Here are the results from my research on most proven anti-mycoplasma natural products [ I'm doing very well now] :

    Mycoplasma Bacteria Natural Cure [all Mycoplasma]

    1. Olive Leaf Extract. 20 ml x 3 daily, mixed with juice
    2. Thyme leaf juice extract.
    3. Oil of Oregano 20 drops x 2 daily mixed with juice.
    4. Samento herb capsules at 6 x 600 mg daily [ not the recomemended dosage of 600 mg once daily], it is an extract of Cats Claw plant.
    5. Uva Ursi herb in large daily quantities, two or three tablespoon using the black berries powdered and boiled as tea.
    6. “Clear Lungs” formula from Ridgecrest Herbals
    7. Vaporizer spray of above liquids, and pure garlic fresh clear extract.
    8. High organic Selenium uptake 600 microgram daily, with vitamin E Succinate 1000 IU daily taken separately.
    9. High vitamin D, 5000 IU to 10,000 IU daily for two month.
    10. Iodoral 50 mg tablets iodine daily for 2 months. Must take 2000 to 3000 mg Vitamin C daily with Rutin to counter Scurvy.
    11. Boron at relatively high concentration
    1213. Colloidal Silver [ have not tried this but its recommended by others]
    14. Raintree Nutrition Myco + Herbal Formula

    If you can take about eight of the above, daily, that will kill off the Mycoplasma permanently.

    Good Luck and do a lot of research.

    [This Message was Edited on 07/14/2011]
  7. earthdog2000

    earthdog2000 Member

    I just wanted to say welcome to this msg. board! The people here are so wonderful, caring and giving! They will offer you a wealth of info. I don't know anything about Mycoplasma but just wanted to say hi and to welcome you! I have CFS, fibro, Bipolar II and a few other DD's. Good luck and I hope you get lots of good advice and info here. I hope you feel better soon too. It's hard enough to deal with CFS on it's own but when other DD's present themselves it sometimes takes a while to get the right treatment and to get well.

    Faith, Hope and Healing, Julie
  8. Waynesrhythm

    Waynesrhythm Member

    Hey Abdulrahman, thanks much for your comprehensive list of natural anti-mycoplasma therapies. I've tested positive for mycoplasma pneumonia in the past, and it still feels like it crops up now and then. Plus, I suspect I have mycoplasma fermentas as a Lyme co-infection. I'll definitely be reviewing your suggestions.

    Thanks! -- Wayne