Discussion in 'Fibromyalgia Main Forum' started by dahopper, Nov 24, 2006.

  1. dahopper

    dahopper New Member

    I really hate to bother you....I know you are feeling really bad too but I think I need some expert advice here.
    I have been on my medication schedule now since I believe October 8th with all the AV's, IV's, TF, Doxy and Dilfican. Up until a little over two weeks ago I was bragging and able to function (not feeling wonderful) but functional. Now I am hurting so very bad and feel feverish terrible fatigue and my body feels brusied all over I am so sore. I feel like I have been beaten.

    Yesterday I had to give myself a break so I took nothing all day and felt so much better (not wonderful) but I could live with how it was yesterday.

    My question to you is can you give me any advice in helping me feel better and still take my medication. Can I cut back on some of the meds and still have them really do the proper job? I just am so miserable. I CAN go on like this...I am not so bad I am in bed just miserable. Will I get better sooner if I stay on this strict schedule? Please just tell me what you would do if you had my schedule and was feeling this bad.

    I hope you are feeling better, Hugs , Love Debbie
  2. Mikie

    Mikie Moderator

    What you are describing is how I felt just before a big Herx. First, the aches and pains, like the flu, and then the purging after the massive dieoff of pathogens.

    A lot of docs are not taking a really aggresive approach to addressing our infections and it can be pretty harsh. Sometimes, one has to slow things down a bit or the cure is worse than the curse. It can also be dangerous if it causes the toxic-shock-like condition of overly aggressive treatments. It is rare but it does happen.

    Think with my treatment was that I started one thing at a time. Some of the treatments overlapped, but I was never on a whole bunch of stuff all at once. I'm not saying one way is better than another but just that if one is taking a whole slew of treatments all at once, it can be too harsh. We are all different and react differently to these treatments.

    A lot depends on how rundown we are when we start treating, how long we have been infected, how well our own immune systems work, and how much of a pathogen load we are carrying. In the beginning, it can be trial and error to get it just right. Like I said, I'd call the doc. Good luck to you.

    Love, Mikie
  3. dahopper

    dahopper New Member

    for giving me your advice. I did not take much of my medicine today. I will see my doctor this coming Thursday in Dallas.
    Have a nice evening.
  4. Mikie

    Mikie Moderator

    Let us know what the doc has to say. I messed up my reply to you. What I meant to say is that a lot of docs are now taking an aggressive approach. I often type "not" when I need to say, "now." It completely changes the meaning of my sentence. Oy!

    I am Herxing worse than ever before. I've been taking the Doxycycline a week for my abcessed tooth. The swelling is down in the gum, so I hope it is helping. I've been feeling just rotten since this problem started. I thought when I started the Doxy that I might feel better. Well, I feel really horrible and now, this Herx. I don't think it's a mycoplasma dieoff because the hallmark burning in my torso isn't present. It must be the infection from the tooth. Anyway, I've been purging all morning and I'm weak. Guess it'll be another day of rest for me.

    Again, let us know what the doc has to say.

    Love, Mikie
  5. dahopper

    dahopper New Member

    I am so so sorry you are feeling so bad. It is just not fun to have to go through this. Sometimes I just don't understand all the pain. I wish I could do something for you to make you feel better. I hope you have been resting and had a some what good weekend.

    I seem to be feeling some better today...not much but anything is better than it was a couple of days ago. I have a very busy week ahead of me which always streeses me out when it falls that way. But I will just have to manage. My husband has been sick for awhile also and he is also going to FFC so we always go together. We will drive to Dallas Thursday then will have to come back home (will get back late around 8:30 or 9:00 PM then the next morning have to be in Tulsa for more doctors appointments. Tulsa is about 1 1/2 hours from here so not as bad as the three hour drive to Dallas. But our Friday appointment is at 9:00 AM. I will probably crash when we get all that done.

    Please take care of yourself and yes I will let you know what my doctor at FFC has to tell me.
    Love, Debbie
  6. Slayadragon

    Slayadragon New Member

    I don't think I've heard of anyone having a die-off with Diflucan. The books say you shouldn't. Some people here say their bodies don't _like_ the drug, but that's something different.

    Why are you on Diflucan? I've used it a fair amount, but only for sinus infections.

    If you have systemic candida, I personally think it's better to go after it the low-tech way (which is what most people on the board seem to do). If you just use Diflucan, the yeast will come back as soon as you stop taking it. (Note: if you ever have to take Diflucan more than a couple of weeks, you should get a liver test. That's another reason not to take it for systemic infections that can be treated in other ways.)

    The low-tech way to kill yeast is:

    1) probiotics (10 billion microorgasms per day--this is about 10 regular capsules)

    2) NO SUGAR EVER! Cut way back on white flour and fruit juice.

    3) Other yeast killers, Oregano oil, pau d'arco, citrus seed extract, garlic and goldenseal are some. Rotating them may be best. Nystatin is a prescription one (to use as a substitute for or adjunct to the herbs.) If it seems you've become Nystatin resistant, try ampotericin B

    4) Try to start gradually on all the things above and work up, or you may get a major herx. (This sort of herx will make you sleepy and cloudy-headed.) Probably it's best to go cold turkey on the sugar, though. It's like giving up cigarettes.....you really can't do it by cutting back. Sugar is more like a drug than like food, I think.

    5) If you do get a herx (and especially if you tend toward constipation), a colonic (colon hydrotherapy) may help. This is tiring in the short term but solved a major herx for me immediately.

    6) Conceivably, try the enzyme mixture called Candidase. Forebearance has had great success with this, she says. Read her posts on it. I'm going to try it eventually to try to keep my yeast under control (they have a habit of sneaking up on CFS sufferers), sometime when I'm up for trying something new.


    If you're taking Diflucan for a vaginal infection, write again. I have a lot to say on this, but am not going to write it unless it's needed.


    What kind of IV are you on?


    Based on my observations thus far, I think you should do one of the things you list and get stabilized on it before you move onto the next. I'd be inclined to the following order:

    1) Get rid of systemic yeast infection. It's a huge drag on the body. There's an established protocol to get rid of it, and it almost always works (eventually) if you follow the instructions. NO SUGAR is key. I took five weeks to clean my system of yeast before starting the AV (Famvir). There was more in there than I thought. Once you don't have that burden, it will be easier for your body's immune system to clear the dead bodies of whatever else you kill later.

    2) Figure out which is more important for you to get rid of---viruses or bacteria. Then take either the antibiotic or the antiviral. If you're not adventurous enough to try an antiviral, take the antibiotic now.

    3) Once you've stopped herxing from step 2), take the other drug ( antibiotic or the antiviral). (Note: I have no idea how long you would herx on either of these. So far it's been three weeks for me on the antiviral. Other people report shorter times or longer times.)

    If at any time you do try an antiviral, start at a low dose and see how you feel. Then gradually work up (waiting at least several days each time) to a higher dose. If the herxing becomes more than you can tolerate (or that keeps you from doing essential activities), back down to a dose that's tolerable for a while and then move back up again.

    4) If you're going to take an antiviral, don't take the transfer factor until the antiviral seems to have done as much as it can. Hopefully by this time you will have stopped herxing and feel better. Then you could try using transfer factor to see if you can get at anything that the av didn't kill. If you get a herx (even a small one) from the transfer factor, you can assume it's helping. (You also could do a test to see if any viruses pop up at that time, and then take a specific TF that is supposed to address them.)

    Whether you should keep taking IV's during all these steps depends on a) what the IV's have in them and b) how well you tolerate getting IV's. (I get sick from having blood drawn and extremely sick from IV's, and so I just don't do them. I don't know why this is a sensitivity, but it's been with me since long before I got CFS.) If IV's stress your body at all, it may be better not to do them when you're doing major herxing, especially from AV's.)


    I have no idea if this is the "ideal" thing to do. It's just what I would do at this point based on what I've seen and experienced so far.

    I'm pretty sure that the FFC's way of giving you everything under the sun at once is a _very_ bad idea though. Hopefully they will realize that soon. In the meantime, be firm (but I would suggest polite) in stating that you want to go more slowly.

    The fact that you did well at the beginning suggests that at least some of this stuff has the potential to be of big help to you, and so I would suggest not giving up on it. Hopefully if you hit one thing for a reasonable length of time before adding the next, you'll start to see good results soon enough. (Hopefully I will start to see good results sometime soon as well......)

    Keep us informed, please.
  7. hugs4evry1

    hugs4evry1 New Member

    Would the natural supplement Resveratrol help with the herxing?

    Hubby's taking it as part of the Lyme Protocol I have him on and everything I've researched about it is good so far.

    Just wondering....


    Nancy B
  8. Slayadragon

    Slayadragon New Member

    What is that supplement? Please let me know more about it, if you have time.

  9. Mikie

    Mikie Moderator

    I haven't checked into this. In the past when I've Herxed, I'll feel a bit fluish with a headache for a couple of days and then Herx for 24-48 hrs. like I'm doing now. Those 24-48 hrs. are hard but nothing I can't stand so I just get through it.

    This morning, my torso started to burn, so I'm pretty sure there was a big dieoff of mycoplasmas. The infection has no doubt tried to reactivate while I've been sick with my gallbladder and now this tooth.

    I think if Herxing is bad, one ought to either slow things down or take something to ease the discomfort. Do you think it is helping your hubby? I hope so. Thanks for posting about it.

    Love, Mikie
  10. hugs4evry1

    hugs4evry1 New Member

    I'm so glad you said that about herxing.

    He's doing really well (in comparison) since he's been on the Stephen Buhner's Core Protocol. (hope I spelled that right)

    But each time we try to go up to 3 each 3 x's a day he gets so sick and can't handle it.

    I've pulled him back to the 2 each, 3X's a day and he does so well that we just can't afford to mess with it now. His work is completely stressful and we're just glad to get him through the days.

    He smiles now, jokes, does a little jig around the house like he used to so we're pretty happy with it. He's even been able to help a bit and notice what's going on more than the past year.

    And we're no longer looking into disability for him like I was 6 or 7 months ago.

    I've wondered about the herxing though because I know so many of you go through it. Does it mean that it's ok to not allow him to herx?

    Thanks & hugs,

    Nancy B
  11. Mikie

    Mikie Moderator

    Herxing only happens when so many pathogens die off that the system cannot manage them. Then, the body has to purge itself of the toxins and it uses nausea, sweating, and/or diarrhea. It isn't good to Herx beyond what the body can safely tolerate. In fact, it can be a lot like toxic shock syndrom and be dangerous. It is rare but it does happen.

    Pathogens can be dying and as long as the body can excrete them, there will be no Herx. Herx is evidence that there is dieoff but lack of Herxing doesn't mean pathogens are not dying.

    Often, it's the immune response which can make us so sick. When we do anything which interferes with the pathogens' usual cycles, they get stirred up. It's like ants when someone steps on their anthill. A sluggish immune system which never noticed these pathogens before will suddenly come alive and start killing pathogens itself. Whenever we have the flu or a cold, we will run a fever and have a headache and body aches. It's the same immune response we can get from anything which riles up the pathogens or our immune systems.

    I started with the Doxy and Herxed with it as described, first a couple of days of an immune response and then, wham! Herxing for 24-48 hrs. The same thing happened when I started the antiviral, Famvir. It was when I tried the transfer factors and the Heparin injections that the immune response made me sick for a prolonged period. I had to be very careful because causing such a big immune response isn't good for us either, especially if we are predisposed to an autoimmune illness.

    Even though the FFC's and other clinics are using these protocols, it is pretty cutting-edge stuff still. Add to that that we are all different, with different tolerances, and I think we each have to work with our docs to tailor our treatments to our own needs.

    I backed down on the TF's and Heparin until I could tolerate them better. We have to have some kind of quality of life while we are healing.

    Glad to hear your hubby is doing so well. When I would feel well, my Mom used to say, "You're like your old self again." Good luck.

    Love, Mikie
  12. hugs4evry1

    hugs4evry1 New Member

    Thank you so very much for taking the time to explain this for me.

    Hope you really start to feel better soon.


    Nancy B
  13. Mikie

    Mikie Moderator

    I've been through this stuff for so long that, at least, I can describe what I've been through. Despite my recent bumps in the road with my gallbladder and infected tooth, I know I've made tremendous progress in the last 5-6 yrs. That sounds like such a long time. I suspect that the timeline will be shorter for those whose docs are treating more aggressively.

    Love, Mikie

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