Where to get mycoplasma testing and guai

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Dec 27, 2002.

  1. klutzo

    klutzo New Member

    To Mikie, Jelly and others:

    1. Can my regular doctor do mycoplasma testing? Do I just ask her to do a PCR blood test? Do I have to order some sort of test kit and take it to her office in order to do the test correctly? If so, where do I get it? If you had to work to convince your doctor to do the PCR test, what was the argument that worked on him/her?

    2. Do you get your guai by prescription, or do you use one of the Internet sites that sells it in order to avoid the problem of docs not believing in it? My Rheumy refuses to even discuss it since Dr. Bennett's study, but my PCP is more open-minded since she never heard of it anyway. If you use a prescription, what argument worked in getting your doctor to prescribe it for you?

    I really appreciate you guys letting me pick your brains. I think I am ready to make a major assault on my FMS again, trying things I have not tried before, though there aren't too many things left! Giving up and resting like I have been has only made me more depressed, so I guess I have to try fighting again.
    I hope to be around to read your answers.....my Neurontin arrived today and the pharmacy sheet that came with it listed "trouble breathing" as one of the rare side-effects. They are capsules, so I can't break down the dosage. After what happened with Klonopin, I am scared to death to even take one pill. Wish me luck.
    Hugs to all and thanks for help,
    Klutzo
  2. klutzo

    klutzo New Member

    I'm bumping in hopes someone will answer before it goes to 2nd page. K
  3. karen55

    karen55 New Member

  4. Mikie

    Mikie Moderator

    I got my Guai Rx from my PCP after showing him the book. In fact, he was so excited about any treatment which offered the possibility of reversing the symptoms of FMS that I gave him the book and bought another for myself. Then, when my daughter with FMS visited, I gave her my book and again, had to buy another. My other daughter heard about it and bought her own book. We're a Guai family. Even Mom was on it before she died.

    It's better to get an Rx for your Guai. I take Guaifenex LA 600 mgs. Even though it a time release med, you can safely cut the tablets. My usual caveat to everyone: Read the book, understand the protocol, and eliminate all sals before beginning the treatment. No doc should hesitate to prescribe the Guai as it's one of the most harmless drugs out there; it's been around for a looooong time. I don't understand your rheumy's attitude. This is what makes me livid every time I hear of Bennet's article regarding the study. It could prevent someone's getting a great benefit.

    Find a doc who will prescribe it for you and forget your rheumy. Mine prescribed the Guai but refused to discuss it or even look at the book. Now that I'm his only patient not begging for pain meds, he's suddenly developed a deep interest in the Guai treatment.

    About mycoplasmas: Do a web search on mycoplasmas and you will find a lot of web sites, including Dr. Nicolson's. You will find the labs where the PCR DNA tests are done. The problem is that the test is expensive and there is a HUGE risk of false negative results. This is due to the short half life of the mycoplasma DNA--24 hours. Even if you have your blood drawn and overnighted to the lab, and even if they do the test the minute your blood arrives, at least half the DNA is degraded to the point that the test will not pick it up. That is why it's so much better to have the test done right at the lab itself. If one is near you or a loved one, it is worth the trip.

    We know my illnesses were triggered by a mycoplasma infection, so my doc and I decided the test was not necessary. Now, I've lost a lot of respect for Dr. Teitlebaum lately, but he wrote an article stating that it is often better to just go ahead and prescribe the antibiotics without the test to see what happens. If there are no pathogens, the antibiotics will have no effect. If a Herxheimer effect takes place, it's a good bet that some kind of bacterial infection is present.

    My doc said this approach is used all the time. When I presented the whole idea of the chronic mycoplasma infection, I was very familiar and well versed in the subject. I downloaded and printed out the info. I had it highlighted and annotated for my doc to save him time. He was very impressed with my knowledge and desire to help manage my care. I'm very lucky to have him for my PCP, even though he knows next to nothing about our illnesses.

    Good luck to you.

    Love, Mikie
  5. seaview

    seaview New Member

    I am taking the guai as of Nov of this year. I copied off several pages from the book by Dr. St. Armand and did a very simple explanation(although it sounds silly when you are trying to explain it to a relatively new pcp) of how it works. I then very sweetly pointed out that I had tried the antidepressants,nuerontin, and a couple of other things (I cant remember right now) that he thought might work who all had very lousy side effects and none of them helped. I explained that the side effects are nill and that I will be responsible for eliminating all the sals. He then talked to another doctor who has tried 4 patients on it .....1 success and 3 failures. He said he was willing to let me be his guinia pig because he has several other patients who also suffer and he does not know what to do for them. I feel a bit of pressure to prove it works(which,of course I am totally hoping it does)so that he will believe in it. I am in an incredible amount of pain and he will not go any higher than vicodin which I have been on for 3 years and gives very minimal relief. I know he cares but is skeptical. Heck, they only see us for a few minutes and we have to live this thing out....and of course, we all look so well(that was pure sarcasm) so, that is how I got my script. He told me I could get it over the counter so why was I asking him and I said because you are my doctor and I want you to be a part of my healthcare decisions. That also helped him realize I was serious. I hope your doctor will take you seriously. I am going to be researching the mycoplasma thing myself.....I desperately need to get better. I have a marriage that is suffering and kids who need me. Blessings on all your decisions,Kathleen
  6. klutzo

    klutzo New Member

    ..from an evening with friends where I started to have a panic attack from noise, cold and over stimulation. They can't begin to understand why kids running around, a house that is only 66 degrees inside and a loud movie would upset anyone. I got it under control by taking extra meds and breathing, but geez, I need relief from this. I am terrified to take the Neurontin though, even though I finally got the script filled. Emer. Rms. are crazy on weekends, so I think I'll wait until Monday night and take it before my hubby goes to bed, so he can rush me over there if it does the same thing to me that Klonopin did.
    I was thrilled to come home to find all these informative responses to my question. Thank you all so much!
    Jelly, I believe the other antibiotic mentioned is Cipro, which I can take. It is the only antibiotic I can take, so my doc will not prescribe it for just anything. I took it for 2 months once at 500 mgs. daily after I got vulvar pain with my FMS, though it turned out to be caused by yeasts, not bacteria. 500 mgs. is a very low dose, and it did nothing as far as causing a Herx. Would that mean I do not have a problem in this area? I had a very bad cold right before my FMS onset, but no pneumonia.
    I will order the Guai book and read it first...I have TONS of lotions around here with aloe, menthol, mint, etc. in it that I'll need replacements for. I will also check at the drugstore to see what type and quality is available, as I'd rather avoid my doctor if possible. Quite frankly, I am sick of conventional docs, and in this state (Fla.) the alternative ones have no power to prescribe or order tests.
    Hugs to all and thanks for info,
    Klutzo
    P.S. to Jelly - where did you get your oxygen? Did a doctor write you a script and then you go to a medical supply place and pick up a tank? How do you know how long to use it? Do you put one of those prong thingies in your nose like at the hospital? If that would work, I'd much rather do it, even if the Herx is worse, so I can avoid taking the only antibiotic I've got left....the more I take it, the higher the chance I'll become allergic, and then I'm up the creek without a paddle.
    [This Message was Edited on 12/27/2002]
  7. Mikie

    Mikie Moderator

    It is my understanding that the OTC Guai only comes in 200 mg tablets; however, it may now be available in higher doses. At 2400 mgs a day, I would have to take too much. Also, my Rx coverage with my insurance covers my Guai. My co-pay for 120 tablets is about $11.00.

    Dr. Cheney has written an excellent article which is in our library regarding breathing exercises to increase the oxygen flow in the body. I grew up in Colorado at the foot of the Rocky Mountains in thin air. Many athletes train in the mountains because it helps their bodies learn to maximize oxygen in the system. Unfortunately for me, that thin, dry, and now polluted air causes asthma, so I packed up for the lower, more humid elevation in Florida and have no more asthma. I do have excellent oxygen efficiency as a result of being a life-long jockette at a high elevation. I practice Dr. Cheney's exercises to keep my oxy efficiency at peak performance. It is a good way to help starve off the mycoplasmas in my system as they thrive in low-oxy environments and starve in the presence of oxygen.

    BTW, I really do think AJME is onto something with her theory that reducing the mucus in the body through the use of the Guai will also help starve the mycoplasmas as they thrive in mucus. Thinning the mucus is probably also good for improving the oxygen efficiency in the body. I'm sure it helps with sinus infections, bronchitis, and other respiratory problems.

    Love, Mikie
  8. Hippo

    Hippo New Member

    Just wanted to add DO NOT TRY TO USE COUGH SYRUP FOR GUAIFENESIN. Get your PCP to write a prescription for generic guai, 600 mg. Print out the article at Dr. St. Amand's web site. My PCP knew nothing about it, but he gave me the prescription because guai is pretty much harmless. Good that you're reading the book. I remember you said you used Eucerin. You can keep using that, and you can also use Vaseline Intensive Care. Good luck.

    Hippo
  9. Mikie

    Mikie Moderator

    Oxygen is considered durable medical equipment (DME) by insurance companies. Most cover 80 percent of the rental of the equipment and the oxygen itself.

    There are also concentrators which are little compressors which take the oxygen out of the air and concentrate it and deliver it through the breathing apparatus. There is no oxygen delivery and you rent the machine. One would think this would be a great saving, but these machines require a lot of energy to operate, so the cost is about the same.

    Love, Mikie
  10. Hippo

    Hippo New Member

    I'm not sure why you can't use the cough syrup; Dr. St. Amand specifically says NOT to use cough syrup in his book. Also, that stuff is kind of gross. I don't know how you were able to chug so much of it. You poor thing!!!

    Hippo
  11. klutzo

    klutzo New Member

    I plan on taking these things one at a time, so I know what is working and what isn't.
    I am on Medicare, and doubt very much if they would pay for the oxygen for such an off-label useage, but I'll ask my PCP what she thinks. I can't afford even $100/mo. more than I am spending now. Medicare still has zero prescription coverage, and with that plus supplements, even getting all meds and supps. online, I am spending what would have been our retirement money. I have to think about my self-employed hubby here too, who has no pension, no 401-K, no medical ins. or other bennies but what he pays full price for himself. Nothing for his old age but what he can save. The Cipro may be much cheaper than oxygen,and if I take an adequate dose and don't get a Herx, then I'll know this is not one of my problems.
    I still believe the W.H.O. is correct in classifying FMS as a heterogenous disorder, meaning there are many causes leading to the same end result. So, while mycoplasmas may be a cause for one person, and phosphate deposits for another, it may be several other causes for others. I made a listing of the approaches I have not tried, and then ranked them by how believable I think they are. First on my list is the Guai. I will avoid all sals and do 2 weeks at 300 mgs. twice daily, if no Herx, then up to 600 mgs. for 2 wks., then 1,200 and so on. If I spend two weeks at 2,400 mgs. daily, still without a Herx, then I know that is not one of my problems either.
    I still think dysautonomia due to head injury, plus being born hyper sensitive is my only real problem, but am trying these things, just in case.
    Logically, there just HAS to be a reason why most sufferers of FMS are middle-aged females, and why so many men with FMS receive partial or complete relief with the testosterone protocol. Hormones must be a part of whatever the root cause is, IMO.
    I talked to my Pharmacist this morning, and she says I can take the Neurontin capsule apart and take just 1/4 of the powder, so I'll start tonight. There was no way I was taking a whole 100 mg. capsule after what Klonopin did to me ,and they are both Neuroleptics.
    Next stop is the drugstore to see what Guai they have. Thank you all....you are such a blessing in my life.
    Klutzo
  12. obrnlc

    obrnlc New Member

    hi klutzo! you probably have answers to your questions by now (don't know why i jumped to page 10!) but here is a little more info. 1) neurontin is used very frequently for nerve pain, but alot of the side effects listed are for people with seizure disorders who use it to control seizures. 2) i asked my doc to just give the guai a try by reminding him i would much rather be able to control my pain by reversing the fms than by taking narcotics the rest of my life. My pcp thinks i am nuts anyhow, but he couldn't argue that one. my insurance won't pay since it is not prescribed for resp. disorders, but pretty inexpensive to buy out of pockets in the prescription dosage. 3) mycoplas. blood test is a simple test done with a blood sample in hospital lab--have a prescription for one but never got it done yet (procrastinator--probably why i am on page 10!) hope this helps--will see you on the boards to discuss guai progress. GOOD LUCK!!!!!!! and thanks for being on the boards--you all are my lifeline to sanity!!! Laurie