Have you heard of these treatments for Mycoplasmas and RNAS-L

Discussion in 'Fibromyalgia Main Forum' started by Sindy-Uk, Dec 10, 2002.

  1. Sindy-Uk

    Sindy-Uk New Member

    Hi All,
    I have been away from this board for a while. So excuse me, if this has been discussed already before.
    My recent tests with Immunosciences Lab show that I have high Rnase-L activity of 21 (normal range 1-10)
    I also have Mycoplasma Fermentans infection.
    My doctor in the UK has suggested taking the drug Immunovir for the high Rnase-L activity.
    For the Mycoplasmas he would like to use the Dioxycclor/sulfoxime protocol as an alternative to 6-12 months of antibiotics. 4 drip sessions (each of two and half hours)are reccommended.
    Has anyone tried these or heard about them? I would like to have as much info as possible before I go ahead with these.
    I would appreciate any input.
    Thanks in advance
    Love Satin
  2. Sindy-Uk

    Sindy-Uk New Member

    Hi All,
    I have been away from this board for a while. So excuse me, if this has been discussed already before.
    My recent tests with Immunosciences Lab show that I have high Rnase-L activity of 21 (normal range 1-10)
    I also have Mycoplasma Fermentans infection.
    My doctor in the UK has suggested taking the drug Immunovir for the high Rnase-L activity.
    For the Mycoplasmas he would like to use the Dioxycclor/sulfoxime protocol as an alternative to 6-12 months of antibiotics. 4 drip sessions (each of two and half hours)are reccommended.
    Has anyone tried these or heard about them? I would like to have as much info as possible before I go ahead with these.
    I would appreciate any input.
    Thanks in advance
    Love Satin
  3. Mikie

    Mikie Moderator

    As more and more is known about the mycoplasma infections and treating them with antibiotics, I believe we will see alternative ways of delivering the antibiotic treatment. I have heard of IV treatments as opposed to daily oral treatment. Unfortunately, I have not heard any results of IV treatments.

    Please do keep us updated on your progress. This is of interest to a lot of people here.

    Unfortunately, I have no knowledge of Immunovir, but I would love to learn more about it too.

    Love, Mikie
  4. Sindy-Uk

    Sindy-Uk New Member

    Nice to hear from you. What is ABX. My doc says that oxygen is included in the infusions. How long will the Herx reaction last?
    Satin
  5. planegirl2

    planegirl2 New Member

    I am trying to get my doctor do have my RNaseL tested at immunosciences,,,,,,,but as yet no luck. It looks like you live in the UK, so the Redd lab in belgium was not used. Immunovir is not FDA approved in the USA but i hear it is a great broad viral immune modulator. Please let us know how you got your blood tested at immunosciences lab. thank you
  6. lea

    lea Member

    Hi Satin:

    I cannot answer your questions, unfortunately.

    I'm hoping you can help me find out how to get a hold of the drug Immunovir that you are taking. I tried looking it up on (Edited to remove URL) and it did not come up. Is it a drug that must me compounded?
    my email is: bysunset@yahoo.com
    thank you in advance
    best,
    lea
  7. Sindy-Uk

    Sindy-Uk New Member

    Sorry I could not come back quickly, my computer has frozen again. It has gone for repair and I am using my nephew's at his house.
    Thankyou all for replying to my post.
    Planegirl - My doctor in the UK does not use Redd Labs in Belgium any more. I dont know why. He just took my blood in his office and sent it to the States. I actually was expecting a negative result.

    Lea - I can get Immunovir on private prescription here in the UK. I think the main ingredient is Isoprinosine. I am waiting to find out a bit more about it before I go on it.
    I hope I can find someone who has used these treatments before.
    Will keep you updated.
    Love
    Satin
  8. lea

    lea Member

    Hi Satin:
    Thanks for your reply. What do you mean by private prescription? Did this have to to be compounded for your?
    thank you
    best,
    lea

    PS You may want to go to the following for a little info. on immunovir:

    (Edited to Remove URL)
  9. Sindy-Uk

    Sindy-Uk New Member

    Lea, When I say private prescription, it means I will have to pay the full price of the drug which is about £60.00 for 100 tablets. If my own GP prescribes it (on the NHS)then I only have to pay about £6.00 . Thankyou for the site info I will have a look at it.

    Rea- wonderful to hear that it worked for you. Pity it took 9 months. What other additional treatment have you been having? Do you have cfs or fibromyalgia? I just want to have some energy, all other symptoms I can just about control with drugs. Did the Immunovir have any side effects on you?
    You can all email me at ssk401@hotmail.com if you have the time.
    Thanks
    Satin
  10. SusanGent

    SusanGent New Member

    Hi Everyone

    Just in case this is useful to anyone who searches this site this is what I discovered about Sulfoxime and Dioxychlor.

    Both are natural substances effectively - not drugs as such and so exempt from FDA approval in the States. Sulfoxime is I gather oxygen and Sulphur - suplhur is an anti fungal agent (found in onions!) and both are good for dealing with candida. I did this by diet and anti fungals using caprylates (from caprylic acid found in coconuts) and so avoided the Sulfoxime infusions in the end. I simply followed an anti candida diet very strictly and then built up on caprylates (I used the diet given by Erica White in her book 'The Beat Fatigue Handbook' but there are lots of books on this.) It has worked for the time being at least and I felt loads better after a few weeks on the diet despite the herxheimer reaction but I suspect the problem could easily return at the moment.

    Dioxychlor is I think oxygen and a chlorate - bascially a salt as in sodium chloride. There has been some research indicating it is 90% effective against the herpes virus - I traced the research on the internet on the Pubmed site written by someone called Bradford. I understand it isnt ultra tested but the results were quite impressive and decided the main danger with such infusions were that they would be ineffective (and expensive!) - but they might work and I was assured were very safe. I asked around quite a bit other than asking the doctor! Then I decided to go ahead with no ill effects so far (in fact I feel a bit better which I am told may be the oxygen hitting the brain but I suspect that is temporary).

    All this is second hand and only my understanding - and I have no medical background - but it might just help someone considering the treatment!

    Sue
  11. nickname

    nickname New Member

    ......Did Dr H test u on the prognos machine for efficacy of the sulfoxime/dioxychlor for myco? Did it show positive and that's why he suggested it? He did it this way for me, and s/d showed to be the least effective which he said was disappointing. This was actually before we had the results back from Immunosciences on the myco which turned out to be negative, so maybe that was the reason. It can be used for candida though - at least one of the components, but I can't remember which one, s or d. Slowgirl will know because she is having the infusions of one of them, not the both. He told me that he prefers s/d to abx because of the long term probs with abs, and s/d is quicker.

    Where I believe the Bradford Group thingy ties in as mentioned by susangent, is that the video microscope Dr H uses, is made by this Bradford Group, and I believe this is who makes the s/d also - check it out, I may be a bit confused there.

    Did u a long reply to your last post to me - did u get it alright? Hope u are ok. I know only too well how difficult it is. The weather is also far too hot.
    Love
    nickname
  12. nickname

    nickname New Member

    Hi Barb
    This weather is killing me - I'm confined to the upstairs of home, and u know how heat rises - have two fans on the go.Guess what husband had already planned for dinner tonight???

    ROAST!!!!!!!!

    Oh my god! I nearly died with the oven going as well.Then I had to eat it!!

    Last week they went away up to Derbyshire and got rained out. Now we have this. He said he could plan dinner, but not the weather. How's that for a logical male answer.

    Funnily enough, son went off to Southend yesterday, and had a lovely time in the cool breeze - should have gone today.
    I think it's 'cause Essex is flat, must be something about flat and no hills, or maybe it's too close to London, or maybe Newcastle is nearer the coast, or maybe I just have'nt got a clue. All I know is, I'm feeling very odd - low blood pressure just like u. I think Tansy has gone already.

    There's definitely something in this low dose naltrexone though, and that's why I putting up with this tiredness. It's really weird, because it's more like a normal, natural tiredness - remember that feeling? I only get tired at period times, (that is hormonal tiredness, and is again a different sort of tired) otherwise I'm either exhausted or not exhausted and totally hard wired. I was'nt as tired today, but it hit me around 4'ish, but what with the heat as well, it's all bit hard trying to put it into context. Think body must be getting used to it though.

    Am speaking to D H end next week so will be able to find out more then. Got my results back from AAL today - just about everything - that was about 5 or so pages - came back low, underfunctioning, or high. Only a handful of things were normal which freaked me a bit. It's all the adrenal, HGH, female hormones, electrolytes, - loads of stuff too numerous to mention. Decided not to try and work it out and will leave it till next week.

    Getting cooler now.
    With best wishes
    nickname
  13. lucky

    lucky New Member

    I just noticed that you have pneumonia. Do you have the walking pneumonia and for how long have you had it? And what are you treated with for your mycoplasma?
    Why I asked....I asked my doctor before I even heard the word 'walking' pneumonia to do a mycoplasma test. Meanwhile, in April I got very sick and after a SARS scare and going to a clinic where x-rays were taken of the lungs, I was told that nothing was showing on the x-ray, but was given antibacterial antibiotics. I did not get better and was almost in bed for 10 days, phoning the doctor a couple of times because I felt so ill, but was being told that the meds will help me. Slowly I did get a little better and was able to take my trip to Portugal, and the sun and change did me a world of good. However, I had trouble breathing which I never had in my life. When I returned I right away saw my doctor who only then confirmed that I was very ill with walking pneumonia and telling me that my mycoplasma test came back 'inconclusive'. At that time I did not even know that mycoplasma causes walking pneumonia and this was not pointed out to me either which I was quite annoyed about. When I mentioned it to my doctor, he told me inconclusive means either way, either I have it or had it.
    On my last visit about one month ago, I asked for another mycoplasma test which again came back 'inconclusive'. I really have no idea what to think because my lungs still do not feel the same as before, although I am not coughing.
    May be you have an advice for me. Right now I feel that the OLE and colostrum help a little.
    Thank you for your reply, Lucky
  14. lucky

    lucky New Member

    and thanks for your reply and all the information. Since I got the two mycoplasma tests back 'inconclusive' and having been ill for as long as you have, and having new things creeping up all the time, I am so positive that either a mycoplasma or other viral/bacterial infections are the reason why we are ill and not getting better.
    I don't know if I am comfortable to have a test done by Immunosciences Labs from so far away and will see what my doctor has to say about the second test and if he will disregard it again.
    Take care and kind regards, Lucky
    [This Message was Edited on 07/12/2003]
    [This Message was Edited on 07/12/2003]