My Treatment Regimen

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Oct 4, 2006.

  1. Mikie

    Mikie Moderator

    I am going to post this on its own because we do have a lot of new members. I haven't posted my regimen in a long time. Obviously, I'm not well, yet. I do continue to improve but there are bumps along the road. I never stop looking for new treatment options but I give great consideration to what I will try. I hope this helps.

    As you know, I believe we have to address the infections and hypercoagulation, if present, to be able to achieve healing. I do think treatment can be too aggressive, though. Each of us is different, so we have to be very aware of how we react and, if necessary, talk to our docs about slowing down the treatment. If one suffers the toxic-shock-like reaction, the treatment can make one sicker than the pathogens do. Seems that a lot of the docs who now specialize in our illnesses are really aggressive in treating the infections.

    My treatment played out over time because five to six years ago, very few docs were even aware of stealth chronic infections and fewer still knew how to treat them. I knew from the lab tests way back in 1990 that it was a mycoplasma infection which triggered my illnesses full blown. When I became so sick I could no longer work almost 6 years ago and was bedridden and on Morphine, I decided I had to start researching to find a way to get better. I started by looking up mycoplasmas online.

    I stumbled onto Dr. Nicolson's website. He had a protocol for using antibiotics to treat them. Doxycycline was the first drug of choice. I took the articles to my PCP, highlighted and annotated, and asked him for the Doxy. He was a great doc. He admitted he knew next to nothing about CFIDS/FMS but was willing to learn and appreciated everything I brought to him. The third day on the Doxy, I had a Herxheimer reaction. I Herx hard and fast for 24-48 hours with a headache, profuse foul sweating, nausea, and diarrhea from hell. Following that, I feel better.

    At that time, no one knew how long one had to stay on the ABX before trying to pulse them. Since then, the protocol has been refined. Patients now take the ABX for a full six months before trying to pulse. It's all trial and error depending on how long one can go without the ABX and without the symptoms' returning. All in all, it took 2 1/2 years before I was able to go off the Doxy completely. As you know, though, I still keep the Doxy around just in case I get sick and run down and the mycoplasmas try to reactivate. It was Dr. Nicolson himself who told me in an e-mail that they have found mycoplasma cysts deep in body tissue lying dormant. They can reactivate.

    It was a fluke that I found I obviously had some kind of chronic stealth viral infection(s). I had to take Famvir prior to facial surgery as a preventive. I went into a complete, but temporary, remission. Again, my PCP and I decided I should be on the Famvir. I took it for about 1 1/2 years, pulsing toward the end. I now keep acyclovir on hand in case my viral infections try to reactivate. I cannot afford the Famvir now.

    You're probably wondering how I know which type of infection is trying to reactivate. It's fairly simple. If I start running a low-grade temperature, sweating and feeling hot, it's the mycoplasmas. If I feel as though I'm getting the flu and chilling, it's likely the virus(es). When I Herx from dying bacteria, my torso burns; when I Herx from dying viruses, my torso chills. From time to time, when one type reactivates, the other does too and I end up taking both ABX and the AV. My treatments did overlap for a time in the beginning and I was taking the Doxy and Famvir at the same time with no problems.

    About this time, I read about Dr. Joseph Brewer's protocol from a member who was here. She is a physician and was very interested in the hypercoagulation. Dr. Brewer is big on the transfer factors and Heparin. I typed up a treatment plan for the specialist I had been lucky enough to find. I would start the TF's and Heparin. I think I tried the TF's first and had such a strong immune reaction that I could only sprinkle some of the powder under my tongue each day. It was a month before I could tolerate a whole capsule. I took the TF C and TF 200 sold here. Between them, they targeted most of the suspected pathogens except mycoplasmas, which I had under control. I took the TF's for 3 months and then started pulsing them for a couple of days every 6 weeks. I still do this and still Herx each time.

    When I started the Heparin injections, I again had a strong immune reaction, the strongest I have ever experienced. I was taking 5,000 IU's twice a day. The protocol called for six months of injections. After about 2 1/2 months, I started bleeding at the injection sites and my doc and I decided to call it quits. My SED rate results indicate that the hypercoagulation has not returned.

    During the time I was taking meds, I read about the zappers here and did some research on them. I became convinced that I had nothing, except my $150, to lose and everything to gain by using one. I still use my zapper when something tries to reactivate. I really probably should use it every day.

    I have been taking probiotics for years and I added colostrum and undenatured whey, sold here. These things help the immune system to grow stronger.

    When I started this treatment regimen, there were no guidelines because no one had been doing this cutting-edge stuff long enough. Dr. Brewer's and Dr. Nicolson's info were a huge help to me and my docs. Today, these treatments are entering mainstream medicine as specialists in our illnesses develop treatment plans for their patients. I am in an HMO and there is zero possibility they would pay for the expensive PCR DNA tests to identify pathogens. I also doubt they would pay for the HEMEX Lab tests for hypercoagulation. We used the time-honored empirical method and it worked just fine. With the right doc(s), one can do this on the cheap.

    I am not a medical professional but I have been through the rough times of Herxing and being very sick with immune reactions. I think it is wise to take things slowly at first. One can always speed things up and get more aggressive later down the road. Some of these treatments require years, or possibly a lifetime, to get control over our infections. Neither we nor our docs should expect too much too soon. Of course, it is up to each patient and her doc to decide. I offer only my own opinions based on my experience.

    Love, Mikie
  2. TwinMa

    TwinMa New Member

    Thanks so much for taking the time to type this all up! I have a couple of questions.

    Are you still on the Guai protocol? How is that working for you?

    Do you know which particular viruses you are positive for? EBV? CMV?

    Did you just pick a broad spectrum Transfer Factor? Have you stuck with the same TF formula or do you feel that switching formulas has benefits? How long did (do) you herx after taking TF's?

    Do you follow any particular diet? Do you eat pretty well?

    Do you do any form of exercise?

    Okay, I'll stop now. I guess that was more than a couple of questions. Thank you for sharing your wisdom with us!

  3. mollystwin

    mollystwin New Member

    For sharing your wisdom. I talked to my hubby about the zapper and I really think I'm going to get one. The Hulga Clark one is now about $180.

    I was telling my twin sis about it and she started telling me about a device her Lyme doctor told her about. Turns out we were talking about the same thing, a zapper! So now I have two reliable sources that this thing can really help! You and Molly's doctor!

    Thanks!!!
  4. Mikie

    Mikie Moderator

    TwinMa, the Guai protocol is one of the pillars of my regimen. I should have included it. I was actually posting on another thread where we were discussing infections and I guess it didn't occur to me to include the Guai when I made this separate post. I consider my FMS symptoms 100 percent reversed from the Guai. That said, however, if I get injured, the FMS pain can recur. It doesn't last. This shows me that the Guai isn't a cure but I never expected it to be. If there is ever a doubt that the Guai is working, all I have to do is stop taking it for a few days. I had to prior to my endoscopy and one day afterward because the Guai does have some blood thinning peoperties. I was hurting big time by the time I got back on it. It only took a day or so for my pain to be gone. I think those old phosphate debris sites remain tender for a long time, kinda like an old injury site.

    Because I never had the tests, my docs and I never knew for certain which virus(es) were chronic in my body. The usual suspects are EBV, CMV, and HHV-6. Since the Famvir, and later the transfer factors, worked so well, we figured we were treating whatever I had. TF's have been shown to work better for the stubborn HHV-6 than AV's. Again, since we didn't know what virus(es) I had, I chose the two TF's which seemed to me to target the most viruses which are common to us, TF C and TF 200. I have not switched TF's as these two cover so much. I usually Herx for 24-48 hrs. after about the third or fourth day from when I take the TF's.

    My diet is pretty good. I eat mostly fresh food, fruits and veggies. I stay away from most processed foods. I do not like to cook just for myself, so I kind of graze all day. I like yogurt and use it for a meal or snack. Strangely, back when I was sickest, I would crave red meat. As I've gotten better, I want it less and less.

    My exercise is mostly the physical therapy I learned years ago following my auto accident. They can even be done in bed. I have used Yoga, Tai Chi, the big ball, and the mini tramp. I have OA in my knees and my doc doesn't want me to use the mini tramp now. The best exercise I get is in the pool. We have a water aerobics group here and I also swim laps gently.

    I think I answered all your questions. Thanks for asking about the Guai. I want people to know how much it has helped me.

    Mollystwin, I hope you get as much good out of the zapper as I have. It's funny how syncronicity works. As soon as you focus on something, info and help come from all over at just the right time. Spooky isn't it?

    Love, Mikie

  5. TwinMa

    TwinMa New Member

    Bumping because this is good info
  6. spacee

    spacee Member

    From time to time, I really am thinking..now what did Mikie do? So, I printed this out!

    Hugs,

    Spacee
  7. jaltair

    jaltair New Member

    That you've learned to know your body so well! This is fantastic.

    I've been on the Board for some time (back when you and Shirl were the moderators) under my current handle and then before under bakron. Since my Dx with lupus last February, I've been mostly on the lupus board, but come back here now and then because of the 'ol FMS/CFS trouble as well as to see my friends.

    It's great to see your post and know how well you are doing monitoring your body. This is something that takes time and is good for those who are new to read.

    Just want to know how much I've appreciated all that you've written in the past and the support you gave as moderator; sometimes I miss that. What is happening with Shirl? I've thought a lot about her as well since last year's disaster in her area and the problems she was having. If you talk with her, please let her know that she has been in my thoughts and prayers as have you and the others who post on the Boards.

    You are a special lady, thanks for being you and all the encouragement you give! By the way, your little grandson is soooo darling!

    Love, Jeannette


  8. PVLady

    PVLady New Member

    Thank you so much for sharing this. You have worked so hard to get better, it's an inspiration for others.

    I recently had the blood test that shows I have hypercoagulation.

    I will print out your post for reference.

  9. Mikie

    Mikie Moderator

    That Klonopin is another pillar of my regimen. It has allowed me to get quality sleep which is necessary for healing. It has also allowed me to get rid of the horrible racing brain, sensory overload, panic attacks, and muscle spasms. It helps with the tinnitus which seems to build over the day. I seldom have to take it during the daytime any more and I hope this means I'm getting better. Used to be I couldn't drive without taking a small amount because just the movement of the traffic around me sent me into a panic. For anyone unfamiliar with Klonopin, it is not a good idea to drive while taking it. I talked with my doc and we agreed that dissolving just 1/4 of a pill under my tongue before I went out was OK. Very small doses help one to focus. Larger doses will make one groggy.

    TwinMa, thanks for the bump.

    Spacee, glad this will help.

    Jeanette, so good to have you post. Thanks for your kind words. Shirl remains a moderator and posts once in a while. She is still having a hard time with her health. I will give her your good wishes when I talk with her. I told her that there are a lot of people who love and miss her here. How are you doing with the Lupus? I keep you in my prayers.

    Prickles, thanks to you too for your bump.

    PVLady, I'm glad you got the test. Now you can do something about it. I can only guess from my immune response to the Heparin that a lot of pathogens can hide out in the fibrin. I wish you good luck with the treatment.



  10. Slayadragon

    Slayadragon New Member

    My doctor just prescribed for me Famvir and then, if it doesn't work, Valcyte.

    You say that you can't afford Famvir now and that you're in an HMO, and so I'm guessing that some companies may be reluctant to pay for these sorts of treatments.

    Do you have any thoughts about that?

    Are there any ways to persuade them to pay?

    Does your insurance company pay for most other drugs?

    What are the prices of these types of drugs if insurance doesn't pay?

    for those interested, I will write more about the results of my immune system panel etc. soon.
  11. Mikie

    Mikie Moderator

    On Famvir, I still had my self-employed insurance thru BC/BS. It was an HMO but probably would not have paid for expensive tests without a lot of hassle. Doing things empirically was just easier and worked fine. I was able to get the Famvir thru BC/BS with a low co-pay. Once I got Medicare, I got into United HealthCare's Medicare Complete Medicare Advantage plan. The Part D sucks big time. It's just cheaper for me to go to Costco and pay cash for my meds. The acyclovir works fine but it does upset my stomach a bit. No Medicare plan will cover benzos so I have to cover my own Klonopin.

    All insurance plans have a grievance policy. If you believe something should be covered, you can go through the hassle of challenging their decision. You just call customer service and find out how to go about it.

    My UHC plan is pretty decent, considering that I pay no premium for it. That will likely change as one of our hospital chains just bought out the other, giving them a huge advantage when negotiating with the managed care plans. When Medicare mandated that the advantage plans offer Part D, all our co-pays went up dramatically.

    Love, Mikie
  12. Slayadragon

    Slayadragon New Member

    That Medicare drug program did not turn out to be very helpful for a lot of people. Hopefully that will change so that people can get the meds they need.

    My BCBS PPO covers most meds, although they're increasingly picky. (They wouldn't give me Provigil unless i had an "approved condition'--which I think is only narcolepsy--for instance.) Hopefully the antivirals are used for enough diseasees that there won't be a problem just based on the script. Otherwise perhaps my doctor will find a way to intervene.

    I'm glad you're doing well.

    Please keep us informed with regard to whether the antiviral you're on now continues to work over time.

    Thanks much for your help!

    Best, Lisa
  13. jeduanboneis

    jeduanboneis New Member

    Your composition is a Godsend!!!!!

    I have always thought I would go back and research what protocol you have taken. Sometime when I didn't feel so bad, so I am very grateful to you for taking the time and care to put it out there for us !!!!

    I have been considering the FFC but am concerned about their lack of insurance coverage and am also considering going to see Dr.Lapp. I have tried numerous treatment regimens without much success. And I am tired of trying to guess and play hit and miss.

    To find a good Dr. means traveling to far distances. Which is fine if I knew I would be helped, but in this rural area there are definite limitations.

    So I will try to incorporate your regime with the transfer factor and, with high hopes, maybe I will Herx !!!!

    I am printing your info for resource material.
    Thanks again!!!

    One question??? How close is the Ryffe machine to your zapper??? I have used the Ryffe machine in the very early stages of my CFS and would consider buying the zapper.

    Thanks for the hope that you always leave with us.

    Jeanne
  14. deliarose

    deliarose New Member

    I saw him about a year ago... It was a fairly disappointing experience.

    I drove to Charlotte over 2 days, spent Over $1,000 and came away wiht a prescription for B12, some Vits, advice to up my sleeping meds... and live within the envelope.

    Oh and a diagnosis of mild autonomic disorder.

    Not much help. The quantity of B12 was too small..altho the advice on sleeping meds was good.

    Since then, I've seen a couple more docs, and am using TFs and antioxidants, and feel like i am making progress.

    Just my 2 cents, but I wasn't impressed with Lapp.

    Do a search under his name on the board.. others have consulted him also.

    Be well
    Delia
  15. Mikie

    Mikie Moderator

    I appreciate your interest. As I initially said, I used to post my regimen because we keep getting new members. I think it's important to know that it takes a very comprehensive treatment plan and a lot of time to make progress. We will each need to do different things, but most of the things I've done are getting more and more common with the specialists. It takes patience because it's a trial-and-error approach. I think it's very important for people to know that it is possible to make progress but that there usually are no magic bullets. I've been following Rich's posts and newsletters and it sounds as though he has also used a wide variety of treatments which have paid off for him. Even though these things are not as cutting edge as they once were, there are few of us who have gone down the path but many who are just starting out. I think it helps to know we are not alone.

    Prickles, thanks for another bump. I do hope this info is helpful.

    Lisa, the antiviral works very well for me but I only keep it around now if the viruses try to reactivate. The pulsing of the TF's keeps them under control most of the time. I was on Famvir for 1 1/2 years when I switched to the TF's. The acyclovir I keep on hand now is just for reactivations, which aren't that common.

    Jeanne & Delia, I think if you can find the right doc locally, you can do these things without spending a fortune. The FFC's run a lot of expensive tests. My docs allowed me to try the meds empirically because if the tests are pos., those are the drugs you end up taking anyway. They won't usually cause harm by trying them unless you are allergic to them. There are enough different ABX and AV's that you can usually find one which you can tolerate.

    You don't need an Rx for the TF's, but I really think it's a good idea to consult with your doc before taking them. There are some conditions, like cancer and autoimmune illnesses, where it is not wise to rev up the immune system. This would hold true for colostrum as well.

    I did a lot of research and printed out all the papers and articles I could find from different sources. I highlighted, and annotated, them and gave them to my docs. It saved them time and they appreciated them. I know my doc would never have prescribed the Heparin injections had I not printed out the info from the HEMEX Lab website. The low dose of Heparin is relatively safe and the articles gave my doc confidence.

    Tansy has done an amazing job of researching and seeking treatments in an environment very hostile to recognizing our illnesses. Where she couldn't get Heparin, she used enzymes. I tried this first but couldn't tolerate them; they upset my stomach. Where there is a will, there is a way.

    BTW, Jeanne, Rife Machines are just more sophisticated zappers. They can use the whole gamut of frequencies which are destructive to pathogens. Medical pros can use them to diagnose by seeing the reaction in the body to the various frequencies. Rife Machines, and others like them, can cost thousands of dollars. Zappers cannot be used to diagnose, only to treat. In their simplest form, they use a "one-size-fits-all" frequency wave to kill pathogens. It does work. If you want, you can buy little cards to plug into some of the models which will give you a discrete frequency for a specific type of pathogen. I've had great luck with just the simple zapper, using the one frequency wave. An example: I live in SW FL where it is a sub tropical climate. Everyone down here wears sandals and most of us get some kind of fungal infection in our feet or toenails. I got some little white spots under my nails which is indicative of a fungal infection. I never had the yellowing or thickening, but still, I worried about the white spots. When I started using the zapper, the new nail growth was healthy and pink with no white spots. There were clear lines across my nails as they grew out where the new healthy tissue was growing in.

    Glad to see the interest and thank you all for you posts.

    Love, Mikie
  16. dannybex

    dannybex Member

    Hi Milkie,

    Did you know that even Dr. Clark herself admitted that the zapper made some patients with CFIDS and/or HIV much worse? Here's the quote from Mark Konlee's newsletter:

    "In May, 1999, I reported on a reader with HIV who said his HIV viral tripled after using Bob Beck’s Silver Pulser for 2 months. At least 2 or 3 other persons with HIV have reported big increases in viral load after using the “Silver Pulser.” In June, I received a letter from Hulda Clark who stated that the “Zapper” another electrical pulsating device that runs on batteries also increases the HIV viral load.

    Last week "Joan" (I changed the name) who has CFIDS used the “Zapper” and told me her symptoms got much worse after she used the electrical frequency machine and has since stopped using it. She said two friends of hers with CFIDS also reported worse symptoms after using the “Zapper.”

    just my two pennies,

    d.
  17. Slayadragon

    Slayadragon New Member

  18. When you posted the *symptoms* of mycoplasma activity---WOW--that's exactly what I'm going through right now, & also viral I believe. I HAVE been tested, and have:

    Ch. Pneumoniae
    EBV
    HHV-6
    Mycoplasma (TYPE, never specified)
    and Systemic Candida!

    (WHEW!)

    However, I was treated, only for ONE month on Doxy (I've taken it so many times, I felt, the dose, and duration, absolutely! were a waste! thank goodness it's cheap!)
    and 3 months, with Valtrex, then acyclovir..
    Then I believe (fog!!) I did one month on Diflucan...now I take KandidaPlex, & a probiotic, and many rx's & vitamins..

    Anyways---I've always, when I read your treatment regimen, wanted to know what dose, of Doxy, & AV's you were on, when treating these bacterial & viral infections--so that I can suggest to my integrative medicine doctor.

    He's fairly new, still, had his practice now for 25 months!
    And he is always open to anything, he has tried sooo much for me, and we just can't get my body to give us ANYthing positive in return...even with 6 months of IV glutathione, 3 days a week, at 2300 per push.

    All we got from that, was me having a port cath put in, from my veins collapsing, and that resulted in not healing well at the incision, and infection twice, the port came out in less than 3 months. (and I flew from Indiana to Florida to see a neuro, who put me on that, had me call 1 month later, ($115 for phone consult--5 mins. or so!!) lol. grrr...

    Anyways, again (I'm so sorry, my brain, MS/FM/CFS--triple brainfog whammy--I tend to ramble when typing!)

    If you could tell me what dose, and I may need even higher, given the way my body is acting---some sort of virus/bacteria attacked me badly this winter, and when I THOUGHT it was gone---I developed infectious arthritis, nearly *everywhere* in my body! Steroid treatment, and time, did calm that down, thank goodness, but I could not move my shoulders 1/2" without them popping loudly, and pain was constant.

    I'd already had arthritis in C-spine & other places, but NOT the shoulders, ankles, FINGERS (ouchie!)

    Well---now, to the present, for 10 months now, I have been having the worst, most miserable night sweats/then chills in my life---actually they just got HORRIBLE, about 2-3 months ago, and every day, as well, I sweat/chill.... I found out last week, that I am indeed, running my low-grade fevers (up to 99.5)

    I had sworn it was going to be my pain med (Fentanyl 50mcg) the culprit---but, at the same time, in 10 months, my pain doctor has tried 3-4 different meds...so? Now she says, "absolutely NOT ANY of your medications..(I READ Fentanyl, Norco, etc can cause sweating) but...this amount of sweating--no way.

    Now with the fevers, I know some infections are goin' on. Most definitely. I haven't had low-grade fevers daily in several years...

    My doctor is waiting for a months worth (AHH!) of steroids to get out of my system, and then running 3 pages worth of labs... some are, Neurotoxicity & Autoimmunity Induced by Heavy Metals Panel (I have mercury & bismuth toxicity)

    ANOTHER (3rd, but, diff lab) Lyme test, because alot of my probs sure *Act* like Lyme..

    and then also ION profile with amino acids, with a Metametrix clinical laboratory...

    But, we have to wait until November---until then, I don't sleep, the moment I drift off--my whole bed is soaked..despite Ice packs around my neck (ooo I can't stand that! lol cold=pain) sleeping with windows open, fans on, My POOR HUSBAND & DOggies!!! lol

    WOW this is long, and I do apologize, but, ty for posting regimen, & please let me know dosages...

    TY In Advance,

    Laura (aintasgoodasIonceWas)
  19. Mikie

    Mikie Moderator

    I have been sick, running a low-grade temp for about five days and have been on the Doxy again. I have another infection and/or the mycoplasma is trying to reactivate. I am starting another Herx as of this morning. I feel as though there is a virus trying to reactivate, so am taking the acyclovir and have stopped the Doxy for now. Geez, this relapse is a mess.

    I really have to wonder about that organic beet I bought to juice. My problems started right after I used it. I scrubbed it with soap and water with a brush but after the spinach problem, I don't think I'll be buying organic veggies again. I'll take my chances with chemicals rather than possible E-Coli. Of course, one can get E-Coli from regular veggies and uncooked meat.

    Danny, thanks for the heads up on the zappers. I can understand one's feeling worse after using one because zappers can cause Herxing from the viral dieoff. I do not understand why there would be an increased viral load, though. It would be interesting to see the studies which produced these results. Unless the studies were done carefully, there may be another explanation for the increased viral load. In any case, I have had good results with my zapper. I do appreciate your input because we do need to know the positive and negative with any treatment we consider.

    Lisa, thanks for the bump. Were you wanting more input on bioidentical hormones?

    Carla, thank you so much for such a sweet post. I really appreciate your kind words. I post what has helped me because I was helped so much by reading what was helping others when I first came here. If just one person gets help and hope from our posts, they are well worth it. You are so right when you say that improvement doesn't come easily. Five years is a long time but I'm so glad you have made so much improvement. It sure beats doing nothing and just getting worse. You are such a nice person and I wish you continued success.

    Laura, it sounds as though you have a lot on your plate and are trying to get some help with it all. I wish you luck. The protocol for mycoplasmas can be found at Dr. Nicolson's website, Immed. It is 100 mgs. of Doxy two or three times a day for at least six weeks. Then, you try to pulse them. You can print this out for your doc. There are other ABX which can be used in lieu of the Doxy. These ABX are relatively safe for long-term use. No one wants to have to take any med long term but we simply cannot heal if we are infected with bacteria like Lyme and/or mycoplasmas.

    I'm sorry but I cannot remember the dose of the Famvir I took. It was the "usual" dose. I now take acyclovir and it's 400 mgs. twice a day. I'm lucky in that my doc knows that I use meds carefully and he prescribes the ABX and AV so that I have them on hand when I need them. Getting rid of chronic infections takes a long time and with some, it is nearly impossible to get rid of them completely. They go latent in the body and will try to reactivate when we get run down. That is why I have the meds on hand all the time. Good luck to you all.

    For anyone new to all this, please do not get overwhelmed. It is easy to because healing all these chronic infections isn't easy. It may be easier to just take one thing at a time. I did that in the beginning because I had no idea what would be involved. Some have found they feel better just by taking an AV. More and more, docs are trying AV's with their CFIDS patients. The best thing we can do is to become as knowledgeable as possible regarding our illnesses, associated conditions and infections, and treatment options. It empowers us.

    I am sick and in a relapse right now but it isn't getting me down because I'm being proactive in fighting it. I don't know whether I got sick from an outside source, like the Red Tide outbreaks or the organic beet, or whether my chronic infections just decided to try to reactivate. It may just be that the acid reflux I've encountered is causing it. That is a condition which affects even healthy people. Thing is that it's getting better, so I'm inclined to think it's related to infection. Even the doc said as much. I'll find out more on the 11th and will let y'all know. The point is that I have tools to cope with this. We all need a "tool belt" which we can count on when we are sick.

    Love, Mikie



  20. These sweats are unbelievable, and have GOT to be figured out NOW and stopped...I'm lucky if I can get maybe 3 hrs sleep on a *good* night, and that's mostly on my back, which I don't sleep well on, but, for SOME reason, my body can cool itself better, while laying on my back--the minute I turn onto a side, doze off---I wake up soaked head to toe, and this happens over and over through every night, and the sleep deprivation, (add 30days high dose steroids in the mix) is just making me crazy. and sooo much pain.

    Since we'd already gone the hormonal route, trying to stop them, (EVEN TRIED ESTROVEN! and..i'm not pre or post-menopausal! hubby just thought I could try it...) Progesterone cream, Zovia birth control, etc...

    I just know it's got to be infection, and my pain clinic doctor imagines so as well, since she says it's not meds, the low-grade fever returning after years is the biggest indicator, I'm sick with a cold now, also...

    Well all that, and already knowing that, I have EBV, HHV-6, myco, C Pneumoniae, & systemic candida, and that none were really treated long enough, and was also over a year ago, and they can reactivate anytime...

    I just hope my integrative doc will do this---I don't know, because, we already have to wait until Nov to do those labs he desperately wants, so that the steroids don't mess with the results (I'd say they still can in only a month, at the dose I was on, but, interfere less, anyways)...I fear he will not* put me on any antibiotics or antivirals until we have the labwork back, which could take who knows how long... so frustrated...

    Feeling sooo miserable & stinky 24/7 I just want to put a pillow in the tub & stay there!!! It's really the pits, when you're suffering so much, and doctors cant* or just WON'T do anything fast enough,...

    *sigh*

    We all got troubles. I'm so sorry to hear you're in such a flare as well, Mikie. Sounds like you're battling like heck. I couldn't agree more about the "tool belt" comment, and, I used to have mine in place, wonderfully, but...now it barely exists.

    For me, it just couldn't be a worse time, my husband's been working *70* hrs, & 6 days a week, for about 2 months, he's sick with the cold he gave me, our pug had absolutely torturous knee surgery Wednesday (but bounced back unbelievably within about 24hrs or less, and is already bearing some weight on the leg! (A NO-NO)

    If my parents & only sibling(sister) hadn't moved back to town months ago, my goodness....I don't even know, but, sis comes daily right now, and helps care for the dogs, and myself...I am sooo thankful to be blessed with a sister that always comes to help. As is my husband! He could never miss that much work to care for me! Yikes!


    Once again, take care all, have a good weekend...come Monday--I could be hearing "you need 3 root canals!" LORD! I hope not. 2 of em I will just have pulled! way less $$$ & trouble.


    Laura