Has any one tried sulfoxime/dioxychlor infusions for mycoplasmas?

Discussion in 'Fibromyalgia Main Forum' started by Sindy-Uk, Apr 2, 2003.

  1. Sindy-Uk

    Sindy-Uk New Member

    Hi Everyone,
    I have asked this question before, about 3 months ago. I just thought there might be some new people who might have tried it. I was positive for Mycoplasma fermentans. My doctor thinks 4 dioxychlor/sulfoxime IV infusions might be able to get rid of it. I went for my first one yesterday. Today,I was feeling more achy and lightheaded than usual. I also had a strange headache. I will get the second one in about 2 weeks time.
    There was another guy there who said that he had done these infusions and his mycoplasma test had come back negative. But, he also had very high heavy metals overload and the doctor thinks that,this might be causing his CFS and he was on some metal chelation infusion.
    So please let me know if anyone has tried it? Successfully or unsuccessfully.

    Many thanks in advance.

    Satin
  2. sb439

    sb439 New Member

    Hi Satin :)

    I'm sorry that I can't help as I haven't tried this yet, but would also be very interested whether it has helped anybody against anything, as I'm meant to have these intravenous infusions, too, in my case for intestinal and possibly systemic bacterial infections.

    (There are also dioxychlor drops, has anybody tried those with any results?)

    Also, Satin, has your headache been very bad, and has it disappeared by now? I hope so!!

    love,
    Susanne
  3. Mikie

    Mikie Moderator

    I've not heard of this treatment, but I hope it helps you. Please let us know how you are doing on this new treatment.

    Love, Mikie
  4. Sindy-Uk

    Sindy-Uk New Member

    Susanne- Yes the headache is a lot better today, but I am feeling very lethargic, which is just due to my condition these days. I am hoping I will see a little difference at least, before my next infusion. Good luck with yours.

    Satin
  5. SusanGent

    SusanGent New Member

    Hi Satin

    I am a new patiant of Dr Ian Hyams and am scheduled to have sulfoxime infusions for candida and ongoing viral / bacterial activity. I have CFS and mercury toxicity but am not badly affected. I just wondered how you got on with the treatments and if you discovered anyone else it had benefited? I am supposed to have the first infusion on Wednesday 4th June and just wondered if you had any adverse side effects or any benefits? It is quite expensive and I want to check that it doesnt do any harm!

    Many thanks

    Sue
  6. Sindy-Uk

    Sindy-Uk New Member

    I have had 3 until now and my 4th one is on Wednesday the 4th June in the morning. Although I should have had them all 2 weeks apart, I have had to leave a gap of 3 weeks between each. I am usually not that sensitive to medicines, but I have had all kinds of funny symtoms that made me a little unwell. Barb is right, I think a lot of the symptoms were probably due to the adrenal medications, which I had started taking.

    I know, a few people who have had the infusions without any side effects. Also my fatigue and general aches and pains had started getting worse before I started the infusions, and I just seem to be on the downhill trend at the moment. I was also on Imunovir for 2 months and I should be starting again this week, but I think I will postpone it for a week. I am sure you will be ok with it. It does cause slight light-headedness afterwards.
    Barb- I was hoping to try the new foot detox system. Did you say they haven't got one yet for the London clinic?

    Best of luck both of you with your appointments, who knows I may bump in to you.

    Love
    Satin
  7. Sindy-Uk

    Sindy-Uk New Member

    Yes, all my scary symptoms have gone. But I am still as exhausted as ever. By the time I reach Dr Hyams office, I am just about dead. I also take the central line from Greenford. 15 years ago I used to take 2 buses, 2 tubes to get to London to work 6 days a week. My total journey time used to be 3-4 hours a day. It all seems a distant memory.

    I think you are right, they usually do have the infusions 1 week apart. Because I was having all these problems they said 2 weeks is ok, which turned out to be every 3 weeks. I do hope that me having them 3 weeks apart, hasn't ruined the effectiveness of the treatment. I will probably have the mycoplasma test, a week later. Even though I am not feeling any better, I do hope the test comes back negative. At least then I can look in to other problems.

    I dont fancy long term antibiotics treatment, which is what others on this board do for the mycoplasmas. Also it could cost another fortune, since my GP probably wont prescribe them. Do you think you might have an infusion tomorrow as well? If you do, make sure you have something to eat and drink, while you are having it.
    Best of luck and have a good journey tomorrow.

    Love
    Satin
  8. nickname

    nickname New Member

    ......I'm pleased that I just read in one of your posts re the organisation side of Dr H's clinic - I DESPAIR at the inefficiencies - IT DRIVES ME INSANE!!! I am so pleased it is not just me - I did not find the post where you were moaning to Suzanne, I think it was, but it sounds like you've experienced similar problems as me.
    All the best - nickname.

  9. Iggy_RN

    Iggy_RN New Member

    My rheummy just put me on doxycycline, 2 tabs 2xs a day, that alone makes me so sick and tired and my pain is much worse. What does this mean having high levels of mycoplasma? Well, I hope the IVS works, then I'll tell my doc about it and see what he says. Thanks
  10. Sindy-Uk

    Sindy-Uk New Member

    Iggy RN- Hello and nice to meet you. I know how you must be feeling with the antibiotics, they make me feel really sick when I only take them for 1 week. Did your Rheumy tell you which mycoplasma species you have? I have the mycoplasma fermentans. I hope the IVs have worked, although I dont feel any better. I am hoping to have the test done again soon, other wise I will have to find other means.
    Please keep us updated.

    Barb - How are you getting on? Did you get any side effects with Dioxychlor? Have you also started taking Trazodone( cant remember exact spelling). Yes, they were 3 different infusions. The 1st one was some antioxidants, 2nd dioxychlor nad 3rd sulfoxime. Guess what, I have a big bruise on my wrist now, where she tried to stick the needle in initially. I did wake up with a bad headache on Friday, but it was better about 4 hours later with Ibuprofen. I had been expecting it to last the whole day. Last time my bad symptoms did nor start until 5 days later and lasted until about the 17th day. Hopefully they were due to the DHEA and Pregnenolone, in which case I will be fine.
    I went to see my GP on Friday regarding Hypercoagulation, I printed out all the info on Hemex Lab tests, and Hughes syndrome. She said she will read the info and let me know which tests I can have on the NHS. Then she suggested that I really should try an antidepressant again. So she prescribed me Amitriptyline 10mg daily. Since then I have been feeling too drowsy and ver tired every day even though I cant really get to sleep. I have reduced the dose to half tablet, but this does not help me fall asleep at night. She wats me to stop taking the Zolpidem which I have for the moment. Last night I took Melatonin with it and had awful nightmares. I will probably not be able to post too much in the next week or so, because I cant think clearly. Cant
    seem to focus on the computer for more than 20 minutes daily.
    Your mum seems really nice, looks as if she is very supportive.
    Take care
    Love
    Satin
  11. sb439

    sb439 New Member

    I read your post, and hope very much that this time the infusions are fine (i.e. that the side effects were from the pregnenolone DHEA.
    But please be careful with the amitryptilin. This is the one (and only) medication the NHS has on offer for people with CFIDS/ME, they try to get anyone they diagnose with CFIDS on it (I was offered it many times, but refused) and there are (as far as I can see) mainly three reasons for it (i) for SOME (but just for some) it helps them sleep and reduces pain, (ii) it's terribly cheap, (iii) it is given because the general NHS view on ME is that it's a mental condition. Now (ii) and (iii) are very bad reasons, and if you don't belong to group (i), I don't see why you should take it, except if you are depressed AND this stuff helps for your depression.
    Be aware, also, that if you have sleep apnea, it can worsen your sypmtoms. It also causes constipation, the last thing you want if you are mercury toxic or otherwise toxic, as it leads to reabsorption of the toxins into the body through the guts. And finally it causes many people considerable weight gain, which they often never get rid of again.
    Have you asked Dr H. about the amitryptilin?
    then, 10mg may be too much for ME, certainly to start with, and if it doesn't help you sleep and makes you drousy at daytime, then perhaps it isn't right anyhow?
    Sorry to be so negative about this, but I just don't want you to get worse.
    All the best,
    love,
    Susanne

  12. Sindy-Uk

    Sindy-Uk New Member

    You are just so quick. I did not expect a reply so soon. I know what you mean about the doctors being so obsessed with giving antidepressants to people with CFS. I thought now with all these tests and treatments I am having with DR H, they would finally believe that it is not all in my head. For years they have been trying to push antidepressants down my throat, even though I have repeatedly told them I am not depressed. She said it was not because she thought I was depressed, but she thought I must be frustrated and fed up because of the illness. She said if she was in my position she would feel the same. Since I need her to be supportive and sign me off sick, I did not want to refuse it. I said I will give it a try again, since I am off work. I will stop the minute I think I cannot cope with its side effects.
    And Susanne, thanks about the tip on blood pressure

    Barb- Good luck with the infusion on Wednesday if I dont speak to you again. I will speak to my doctor about the Trazodone next time I speak to her.

    Love
    Satin

  13. Iggy_RN

    Iggy_RN New Member

    Thanks for responding to my post!! I will see my rheummy this Thursday and Ill ask him which type of mycoplasmas I have. He will go over the diagnosis and treatment then. Thanks again, Michelle
  14. SusanGent

    SusanGent New Member

    Hi Satin

    Thanks for your reply. I decided in the end to go back and see Dr Hyams and ask more questions before going ahead with the treatment. I think it is for candida and I have been dealing with that with diet and anti fungals anyway and am more concerned about the mercury toxicity. I want to know exactly what is in sulfoxime and dioxychlor - I guess sulfoxime is just oxidated sulphur which has anti fungal qualities but why isnt it FDA approved?

    Glad to hear others have the same opinion on the admin of Dr H's clinic! It is pretty bad I think. But Dr H seems to have put his finger on what is happening more than anyone else!

    Good to hear you were not too bad after the infusions - do hope you improve!

    Thanks again

    Sue
  15. SusanGent

    SusanGent New Member

    Barb

    Thanks so much for your reply. As you will see I decided to ask more questions about the infusions. I have also taken DHEA but with no side effects.

    I also want to ask more questions about chelation which I have heard is not always to best answer though it may be. I am getting my Gp to check mercury levels and to get me to a toxologist for his advice too. I am in touch with someone in Australia who thought she had CFS for 17 years and has improved rapidly once amalgam fillings were removed by a specialist dentist and then mercury drawn out but by diet and supplements not by chelation. Took 18 months but she is now pretty well.

    Looks like it will be July before I get back to Dr H to ask questions but if I go ahead we may meet there!

    Thanks again

    Sue
  16. Sindy-Uk

    Sindy-Uk New Member

    Hello Sue,
    Nice to hear from you again. I have finished my 4 infusions, which Dr H had reccommended. I didn't have any bad side effects from the last one. So I presume all the side effects in the past must have been due to the DHEA and Pregnenolone. Having said that, I dont feel any better either. Dr Hyams wants me to have the Melisa test to test for mercury toxicity. I wanted to have this and the Mycoplasma test done this week, but there seems to be staff and organisation problems at Dr H's office at the moment, so I cannot get these done for a few weeks yet. I am feeling really too exhausted and have very foggy brain these days, partly due to the Amitryptiline which I am taking at the moment. Hope to speak to you again soon.

    Love
    Satin
  17. lucky

    lucky New Member

    I have never heard about these infusions for mycoplasma and may be you could explain a little more about them. And are these done by a regular medical doctor?
    Thanks for your reply, Lucky
  18. SusanGent

    SusanGent New Member

    Hi Satin

    Good to hear you have no side effects from the last infusion. I think Dr H's lot are well behind adminsitrativley and in bookings since he has been on hols. I dont go back to ask my questions until 1 July and booked that over a week ago. I havent heard of the Melisa test - another question to ask! I am investigating other clinics / toxologists on the mercury issue to get things moving a bit.

    So sorry you are feeling so exhausted and brain fogged - also that you dont feel better from the infusions. I guess it would take some time to have effect though. I really want to know why not treat candida by traditional methods but I realise you had the infusions for other things too - which I may also need!

    Thanks so much for letting me know how they went - it helps with the decision making!

    Hope you begin to recover and the infusions take effect - maybe the enforced rest before the next set of tests will help!

    Sue
  19. lucky

    lucky New Member

    for your reply. I was under the impression that these infusions were for mycoplasma. However, if they kill candida, one battle will be won, and are these infusions done by a medical or alternative doctor?
    I hope you are feeling better and nice hearing from you, Lucky
    [This Message was Edited on 06/20/2003]
  20. Sindy-Uk

    Sindy-Uk New Member

    just a quick reply. My thanks to Barb for replying. She is right regarding the infusions. Dr Hyams said, that these are oxygen releasing products. The oxygen is supposed to kill the candida and the mycoplasmas. I do have some written info somewhere from the manufacturers of the products. I will try to post it when I get some energy.

    Take care
    Satin