lisapetrison please read

Discussion in 'Fibromyalgia Main Forum' started by ETN, Jan 6, 2007.

  1. ETN

    ETN New Member

    Hi I find all of your posts very interesting.

    I am treating for chlamydia pneumonaie, ebv, cmv, low dhea, no testosterone, etc.

    I also have endometriosis, asthma, myofascia syndrome, IBS, had severe sinusitis(had 2 surgeries) disc out in neck with spinal cord compression,degenative disc disease in low back, arthritis in low back, headaches, depression
    I think that's it..well I am sure there is something else but can't rememember right now! LOL
    My dr is from Stanford but is where I am so I am thankful that I have found him. He is on the cutting edge of all of this.
    I am interesting in talking to you about your treatment and whatnot.

    *email address removed per site rules

    Look forward to hearing from you
  2. Slayadragon

    Slayadragon New Member

    Who is your doctor from Stanford? What kind of treatments is he pursuing or planning to pursue?

    I'm happy to respond on the board to whatever thoughts you have, but am hesitant to offer one-on-one comments since I feel too much like I'm "playing doctor" then. I feel more comfortable if other people can respond too.

  3. ETN

    ETN New Member

    His name is Dr.Powell...not sure when he graduated but he's not that old.

    I am on the Vanderbilt Protocol by David Wheldon
    Orignally on my first appt. I started the protocol.
    I had not idea what I was getting into. I was originally dx with Cpn and started the antibitic treatment. Also found out that my dhea was very low, no detectable testosterone, started with a cream for the testosterone and started taking dhea.
    My dr treats Cpn as agressive as TB. Back then which was 2 years ago I was on:
    Amoxil 500mg twice a day
    a week later added:
    Zithromax 250mg 1 tab M, W, F
    a week later added:
    Rifampin 300mg twice a day
    a week later I would then start pulses of:
    Flagyl 500 mg twice a day
    that was just the antibiotics
    I also started B-12 injections 3ml's M, W, F
    Oxytocin injections M, W, F
    and numerous other things

    over the course of two years it was hard. When I added the rifampin I was very sick. I could literally feel the bacteria oozing out of me and was bedridden for over a month from the rifampin. I ended up stopping it.
    I did the abx for a year but a year ago this month I was taking care of my dad for a month and 3000 miles away from home and just couldn't do the rigorous txt.

    Now over the course of two years they have tweaked the protocol and changed many things.
    Now they are finding out about all these viruses and whatnot.
    My new abx now are :
    Flagyl 1000mg twice a day
    Urodiol 300mg 2 three times a day
    Zithromax 250mg 1 tab M, W, F
    I then need to start the rifampin but will do a very low dose because I know the reaction I get to it.
    Then I am to add the flagyl and ethambutol.

    anyway
    I just wanted to say hi and let you know I enjoy reading all that you write.
    I see you are in Chicago...My entire HUGE family lives in like every suburb there..I consider it my home cause we were there and are there so much. I love the area. My dtr is going next month to visit my sis.
    Nice to meet you
    My name is Meghan
  4. Slayadragon

    Slayadragon New Member

    Meghan--

    My _god_, that's a lot of antibiotics.

    How is your yeast situation? (If you don't know, I would assume it's out of this world bad.)

    My guess is that your sinus problems must be caused by yeast, since after all those antibiotics it's hard to imagine that there's any bacteria in there left. Have you treated for it at all?

    How are you feeling in general, compared to before you started doing all this stuff?

    Is the c.p. gone yet?

    Chlamydia pneumonaie came up on one of my tests too. My doctor did not mention it, and instead proceeded to do the viral test (for NK Cell activity, Rnase-L, apotosis and alpha-interferon).

    As I mentioned in my session write-up, he believes that if you kill enough viruses in a non-stressful way, the patient's own immune system will perk up and take care of the bacteria on its own.

    He doesn't like to try to go after bacteria because of the yeast problems resulting from doing so.

    We didn't discuss this, but I think it would be a good idea to test again for bacteria, after taking the viral killing as far as possible and then waiting a bit to give the immune system time towork on its own.

    If by chance bacteria were still there, treating it at that point sounds more sensible than treating it before treating yeast.

    A functioning immune system will be more likely to keep yeast under control even when stressed by antibiotics.

    I'm sure that c.p. is doing something bad to me. I'm far more afraid of the huge numbers of viruses that have been revealed to be present in my body though.

    I'm even more afraid of yeast at this point, especially since I've been stupid enough to have acquired a whole bunch of Diflucan-resistant yeast. I don't know what yeast does to me in the long-run, but it could incapacitate me permanently (thus allowing me to do no more viral killing due to the stress on my system) if allowed to run wild.

    Let me see if I can find a post called BPPV, which I will add to this thread. It's hard for me to explain why yeast is so bad without giving a concrete example.

    Thanks for your nice note. I've been in Chicago for 24 years (since starting undergraduate school). It's quite hard for me to imagine wanting to live anywhere else.
    [This Message was Edited on 01/06/2007]
  5. Slayadragon

    Slayadragon New Member

    Okay, here's my story.

    In 1995, I was learning to ice skate and fell down on the back of my head. I lost consciousness briefly and went to the emergency room. They took an X-ray of my head and then sent me home (actually to my hotel).

    The next morning I woke up and the room was spinning around violently. I vomited several times. I went to the emergency room and they did a CT-scan of my head. They said they didn't find anything of significance, gave me some kind of anti-nausea drug (can't remember the name....very exhausting to take) and sent me away.

    After about a day, the nausea went away. I had other aftereffects from the head injury (loss of concentration, anxiety, etc.) but no more vertigo or nausea.

    A couple of years later, I went to an osteopath, who did some cracking stuff on my back (including my neck). The next day I got the same symptoms as I did right after the head injury. I called the osteopath and he blew me off (said something stupid like "you must be going back through it"). I took a bit more of the stuff that they had prescribed at the hospital right after my head injury. By the time the one dose of medicine I took had worn off (in several hours), the vertigo was no longer present without it.

    A couple more times over the next eight years, I had some episodes where the room felt like it was spinning around. (One time was after a violent sneeze; I'm not sure what could have prompted the others.) The sensation lasted for only half an hour or so when I was in certain positions, and I didn't have any vomiting.

    About three months ago (12 years after the head injury), I happened to be out of town. I noticed that the room started spinning and that I felt sort of nauseated when I held my head in certain ways. It wasn't debilitating, just sort of unnerving.

    The day afterwards, the room started to spin around violently and I vomited several times. This continued for hours. Remaining in a specific still position in bed stopped it temporarily and for the most part (i.e. I was still feeling a little spinning but not enough to make me vomit). However, as soon as I would roll over even a bit (much less get up), it started again.

    I was by myself and didn't especially want to call an ambulence to take me to the emergency room (that seemed sort of drastic unless I really had no alternative), and so I tried to consider what the problem might be and how I could fix it. My first thought was that maybe it was an infection of the inner ear and that some decongestant would help. I happened to have some Sudafed with me, and so I took some of that. Within a short time, things became much, much more stable. I still felt a little queasy when I held my head in certain ways, but was okay enough to get to the emergency room on my own.

    There I met a very nice and extremely smart doctor who said he had attended a seminar on this topic at a medical conference about six months earlier. He examined me and then had me do some lying down/sitting up exercises while he looked at my pupils to see if they reacted as they do in BPPV (I think by flashing or something?). They did. He then told me about BPPV, including about how crystals dislodge in the inner ear and cause imbalance.

    I mentioned how much better I felt on the Sudafed, and he said he thought that I had a sinus infection that was pressing on the inner ear, making the symptoms much worse than would be with just the crystals. I've had sinus iinfections numerous times in the past, and so that made lots of sense to me.

    He then showed me how to do the exercises mentioned in that article and gave me some Antivert (meclizine). The Antivert (especially mixed with the Sudafed) worked pretty well, and I got home.

    Except for one time, all my sinus infections in the past have been caused by yeast. Antibiotics (and an antibiotic cream that my CFS doctor cooked up) did nothing or made the problem worse. Diflucan (an antifungal drug), on the other hand, invariably relieved my symptoms within one day. (The symptoms were primarily extreme sleepiness and fogginess, along with a large amount of postnasal drip and some sinus pressure/headaches.)

    I made an appointment with my CFS doctor and in the meantime decided to try taking the Diflucan (100 mg) on a daily basis. The vertigo symptoms remained with me (except when I was taking the Antivert and/or Sudafed) until about a day after I started the Diflucan. After that, I occasionally had a spell when the room would spin a bit (especially when I lay down or sat up quickly in a particular way), but there certainly wasn't any vomiting. After a couple of weeks, the symptoms died down to the point where I sometimes was getting a little bit of vertigo, but not anything that was worth mentioning.

    I stayed on the Diflucan for one month. I did the exercises that the recommended sporadically. Since stopping the Diflucan, I haven't had any symptoms to speak of.....just a little bit of unevenness if I move into the wrong position to quickly, on an occasional basis (a couple of times a week). I recently made a list of the health problems I currently was experiencing, and didn't even remember to put this on the list because it has been so slight.

    It was extremely lucky that I tried taking that Sudafed (even if it was for the wrong theoretical reason) and happened upon that wonderful doctor in the emergency room. (My CFS doctor might have come up with the answer on his own, when I eventually got to see him, but I'm not sure of it.) I realized that BPPV could be a totally debilitating disease to have over a long period of time, even if it was in a milder form than what I experienced. I was pretty scared that one awful day, both because I didn't know what was causing it and (more importantly) because I would have been totally incapacitated if it had continued. Probably some people do remain totally incapacitated with it over weeks or months (or even years). I can't imagine how horrible that would be.