For Mikie TF

Discussion in 'Fibromyalgia Main Forum' started by connieaag, Dec 7, 2006.

  1. connieaag

    connieaag New Member

    I just ordered TF for my daughter to start. She has been on/off AV's for about 6 months. Ending 2 weeks of 6400mg daily of Acyclovir Monday, so I thought we would try TF. She has been on low-dose AB since May 2005 for any mycoplasm issues, so I think her body might be ready to rebuild and start to take over.

    Did you stay on AB with the TF? She's on 100mg Minocin daily and 60mg Bactrim (sinusitis). She hasn't had sinus infection in a couople years, but when she tries to go off Bactrim she can feel one coming on. Just wondering.

    Another experiment to put my kid through. I'm sure some think I'm nuts, but I think things are developing daily with this DD.

    Also order the BLT Visor! She is tired of sitting in one place for the light therapy.

    Connie
  2. Mikie

    Mikie Moderator

    I know some docs prescribe both AV's and TF's at the same time. I'm not sure how effective this is. The TF's are made using live viruses. Only the "transfer information" is removed and one cannot get the virus from the TF's. Still, I have to wonder whether the AV's destroy this transfer info before the TF's can train the immune system. I've never been able to get an answer.

    In my opinion (I'm not a medical professional) it is better to take the AV's to get the viral load down and give the immune system a break before switching to the TF's. I believe the TF's which target specific pathogens are superior, in the long run, to AV's which work better short term.

    Has your daughter had the ISAC panel for fibrin overgrowth in her blood? You can get more info about this at the HEMEX Labs website. This type of hypercoagulation often occurs where there is long-term chronic infection present. The treatment is low dose Heparin or enzymes to clean out the fibrin where pathgens hide out from the immune system.

    Has you daughter tried Guaifenesin for her sinuses. It thins mucus and is in many asthma and cough meds. It can be bought without other active ingredients. It is Mucinex if you buy the brand name. It is sold here in both the fast acting form and the long acting form. It is also used for the treatment of FMS but in order for it to work for FMS, one has to eliminate all salicylates from ones meds, supplements, and personal-care items. If you are interested, you can learn more at fibromyalgiatreatment.com.

    I used the TF C and the TF 200 (which now goes by a different number). Between these two, they cover most of the common pathogens, except mycoplasmas, which infect us.

    Hope this helps. Good luck.

    Love, Mikie
  3. connieaag

    connieaag New Member

    Thanks for the info. She won't be taking AV's with the TF. She has been on Respaire which is a Rx guaf drug for a long time as well as Bactrim. My husband takes Musinex, and I may switch her after the first of the year. I don't want to change too much with going off AV, lowering Abx and adding TF.

    Take care. Enjoy your posts. Connie
  4. Mikie

    Mikie Moderator

    For the kind words. Forgive me if I've repeated any info or forgotten what you have posted before. This bad tooth is making me really sick and my mind is shot. I'll get it fixed on Tues. Hope I make it til then.

    Love, Mikie
  5. connieaag

    connieaag New Member

    I get horrible tooth pain from my sinuses shen the weather changes! That and back pain are the worst!
  6. connieaag

    connieaag New Member

    So what do you know about continuing her ABx (Minocin and Bactrim alternating days) when she starts TF?
    Thanks
  7. Mikie

    Mikie Moderator

    If one is on a TF which targets bacteria, I'm guessing the ABX might kill the transfer info from that bacteria before it can train the immune system. As I've said about using AV's with TF's which target viruses, I've never been able to get an answer to this question.

    Taking ABX should not have any effect on TF's which target viruses.

    Many docs do prescribe AV's and TF's at the same time but I still question the efficacy of this. I think the ideal way is to use the AV's to get the viral load down and then switch to the TF's.

    I think in the case of bacteria, it is better to use ABX, if one can tolerate them, until the infection is under control. TF C does target Lyme but I don't know whether it could get Lyme under control without first using the ABX. There is a TF for mycoplasma infections but, again, I don't know how well it would work by itself. Had I known about the mycoplasma TF, chances are I would have tried to use it instead of the ABX, at least, on the tail end of the treatment.

    All this stuff is so new that I don't think we have all the answers yet. Altogether, it usually takes about two years of treatment to get all our chronic infections under control. Of course, this depends on how long we have been infected. Most people on these new tratment regimens have suffered long-term infections prior to starting treatment with ABX, AV's, and TF's.

    What is exciting to me is that there are docs now who are willing to use treatments to rid us of these infections. There is still no magic bullet but we are making progress. Anyone on these treatments now is participating in cutting-edge treatments. As we go along, I'm sure new treatments will be added and these regimens will be refined.

    Love, Mikie
  8. connieaag

    connieaag New Member

    I think we have the bacteria and viral infections under control, so the TF should be at the right time. I hate to take her off the Minocin -- it was for mycoplasm, but she has NO acne and my son has it horribly. Maybe I'll cut way back???? I am reducing the Bactrim and staying on Respaire and nasal spray instead. Maybe just 3 minocin a week?


    Maybe I'll call ProHealth to see what they say. Or have you tried?
  9. Slayadragon

    Slayadragon New Member

    Connie and Mikie--This conversation was very helpful for me. Thank you.
  10. Mikie

    Mikie Moderator

    Lisa, I'm glad if any of this info was helpful to you.

    Connie, the protocol for long-term use of ABX usually includes pulsing the ABX before stopping it. Dr. Nicolson suggests going off the ABX for two weeks and then pulsing the ABX for six weeks. Then, start trying to see how long one can stay off the ABX before symptoms return. If they do return, one takes the ABX another six weeks and tries again. It's all on his website, Immed. I would discuss this with your doc.

    Best of luck.

    Love, Mikie
  11. connieaag

    connieaag New Member

    We have tried pulsing the Bactrim -- even in the summer months -- and she can't go for more than a week or so w/o getting a sinus infection. We have done this a handful of times. She is already complaining of sinus/throat issues this AM and we weent off of it for a week, then started every other day to the last time the symptoms started again. I guess ev-O-Day isn't enough in her system. She takes 1/3 of the dose one would take for a sinus infection, so her doc doesn't feel like it's a big deal to leave her on it.

    I am just concerned with the TF, and her ENT knows little about TF. I will seee him again this weekend (close friend) and discuss it more. Will advise.

    She actually feels great today painwise. Went ice skating last night, no Vicodin for 2 days! She hasn't done much all week, and saves her energy for the weekend. Tyical teen, I guess :) Really working hard on not overdoing it though.

    Connie
  12. Slayadragon

    Slayadragon New Member

    Connie,

    My experience with bacterial sinus infections (or any sinus infections) is that they are very hard to get rid of.

    What I've used successfully in the past is a recipe that my doctor worked up with a compounding pharmacy. It's a combination of anti-bacterial stuff and petroleum jelly, applied to the inside of the nose with a Q-tip a few times a day. The goal is to get it where it belongs but not throughout the whole body, since it's not needed elsewhere.

    It worked really well for me, and I took it for quite a long period of time. and because it has an immediate effect, I was able to try going off it and then to go back on if necessary.

    If you wanted, perhaps your doctor could call the pharmacy and ask what the ingredients are to see if it might be right for Kat. I kind of doubt that my doctor has asked them not to share the recipe.....

    The pharmacy is called Hopewell, and their phone number is 800-792-6670. They're not particularly friendly to patients, but my feeling is that they're much different with doctors. My doctor's name is Dale Guyer, and the pharmacy should know exactly what you're talking about if you just ask for a compounded nasal salve for bacterial infections.

    My most recent prescription is a few years old, but they may be able to look it up by prescription number if they don't immediately know what your doctor is talking about. It is Rx# 631821, and under just my regular board name.

    I really do keep throwing a lot of info at you, don't I? it must be overwhelming. Your comments keep reminding me of things that have helped me (it's been such a long time since I've needed some of this stuff that it's not top of mind when people just ask "what's helped you?"). I thus don't want to wait until later when I won't remember what people's problems are.

    It took me years and years to go through all this stuff myself, and so it's obviously too much for you to absorb (much less try) all at once. Maybe eventually you can work your way through looking into it and maybe trying some of it, and just keep it on file as possibilities until then.

    I hope you are taking care of yourself. Obviously this disease is a long haul, and you've got to make sure that you don't jeopardize your own health in the process.

    Best, Lisa

    [This Message was Edited on 12/09/2006]
  13. connieaag

    connieaag New Member

    She doesn't have an ongoing sinus infection, just when she goes off of ABx one comes on again. So am I wrong to think it's not killing the bacteria? We have done saline washes (yuck) and she has had several "cultures" where she blows her nose into plastic wrap basically, and they culture her snot! Nothing ever shows up, so I'm not so sure it is yeast. ?????????

    She's fine as long as she stays on Bactrim 60mg and Respaire. I think swimming so long wiped out her sinuses!
  14. Mikie

    Mikie Moderator

    Can be one of the most helpful things for sinusitis. It thins the mucuous so that it can't easily harbor pathogens. If one is using the Guai for the FMS Protocol, one has to become "sal free," but the Guai at higher doses, usually 1200 mgs. of the LA Guai twice a day, will thin the mucuous without having to become sal free.

    Love, Mikie
  15. connieaag

    connieaag New Member

    She has a purifier in her room. We have 3 more throughout the house and on our furnace. She does not test positive for any alergies. I need to look into some of these ideas and Mikie and Lisa's more.

    She has had sinus issues since she was 8 years old. Had a T&A, but that didn't help. I'm trying to take her off the Bactrim. Interesting enough, when I decreased the minocin to Ev-O-Day, her face started breaking out in acnce!

    I was hoping to get her off these things before doing TF. Maybe her body needs the TF to build its own defenses.

    How are you doing? Kathryn has actually had a great weekend spending time with friends Friday, Sat and today. She hasn't done that three days in a row for 6 weeks. She just doesn't have a lot of stamina. She does like the Homebound schooling though, so she can take it easier during the week, and play more on the weekends
    [This Message was Edited on 12/10/2006]