UPDATE; on my Mycoplasma treatment with Doxycycline By Jellybelly

Discussion in 'Fibromyalgia Main Forum' started by Shirl, Sep 14, 2002.

  1. Shirl

    Shirl New Member

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    jellybelly
    (658)



    UPDATE: on my Mycoplasma treatment with Doxycycline. Is this progress? 09/10/02 05:17 PM

    For those of you who don't know me, I have had CFS/FM for 22 years. It began with a case of Mycoplasma Pnuemonia. It was pretty insignificant then, but became more important about two years when my Dr. started telling me about Mycoplasma's. I dragged my feet for about 2 years and then deceided to get tested at the lab in LA. I came back POSITIVE not only for the Mycoplasma P. but for Mycoplasma Fermentans (Incognitus). I started treatment about 2 1/2 months ago. This is what has been happening.

    I have been pretty much pain and fatigue free for about 8 years, but that was only due to the meds that treat each of my symptoms. Now with a possible cause I was started on Doxycycline. Nothing happened till about the 8th day, when I became extremely weak and fatigued. My blood pressure was very low, sometimes to low to even pick up with the blood pressure cuff I have, when it did pick up it was 90/60 while standing. My heart rate was 145 while resting. I spoke with my cardiologist who sent me straight to the ER. There it was found I was running a temp of 101 which I rarely ever do. I can remeber only about 3 times in my life running a fever. I was having difficulty breathing, my lungs just felt irritated, ki8nd of stiff like they sometimes do during a flair. They did a chest xray and found nothing. Well all this kind of scared me and I went off the Doxy.

    I started back up after about a week, and felt pretty ok. Except for the fact that I had some redness around my toes on both feet, they were slightly swollen. This condition has slowly worsened and spread all through my feet and ankles and sometimes my knees. My feet would swell like balloons, they were red and feverish. No pain really and no itching. I've been feeling a little run down, I have to nap every day and go to bed very early.

    Well I got a little worried again and stopped taking the Doxy last Thursday nite. Slowly a little each day the swelling decreased. I called my Dr. and heard from him today. He wants me to start back up and continue through till the end of the third month. He is suspecting that the Doxy is in fact making headway and may be killing of Mycoplasma that has settled into these joints. It is interesting because I have a lot of stiffness in my feet and ankles, and I also get a lot of cramps in the muscle right abouve my ankle. This muscle also got very red and feverish on both legs.

    If my feet swell again I will go in for the Dr. to look at it and possibly run some more tests for RA and Lupus just to make sure it's not that. I've been tested for both of these probably 10 times each, but that is also always a possibility.

    So that's where I am at, something is definetly going on. Hopefully it is the Mycoplasma dieing off and releasing toxins. The longer you have this DD the longer it is expected to bring it under control. Flairs are also expected. So we'll see and I'll keep you posted if anything new happens:}

    [This Message was Edited on 09/10/2002]


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    kitkat623
    (75)

    Wow! 09/10/02 05:39 PM

    I'm so sorry to read that you're going through such a stormy patch. Sorry...and a little worried. Is it just possible that you have an allergy to this medicine? A bad allergic reaction can drop your blood pressure like that. May I be so bold as to suggest a second opinion? Don't want to offend, but this sounds a little scary to me. Hope one of our nurses will come along and give you better advice than I can. I do feel somewhat concerned for dear Jelly! Please keep us posted. Kitkat a.k.a. Carob Kate


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    rosetta
    (22)

    Test 09/10/02 05:48 PM

    What kind of test did they do to determine that you were positive for Mycoplasma P. and Mycoplasma Fermentans (Incognitus).


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    jellybelly
    (658)

    Try not to worry little Carob Kate! 09/10/02 05:50 PM

    My blood pressure is normal after that day, heart rate is much lower. Low blood pressure and rapid heart beat can also be due to infection.

    I don't think it's allergy to the Doxy, I've looked up possible reactions and this isn't one of them. It also comes and goes, I can be all swelled up then it goes away for maybe a week or so. That doesn't sound like allergy does it? Nothing else on me is swelling not my hands or anything.

    Thanks for your concern and I am very cautious as I go a long. After 22 years of this crappy thing I'm pretty aware of myself. I do feel like I am in a flair though, all the usual problems for me, feel like I'm running a fever but nothing, lips are peeling again, eyes are burning and I'm pooped. My daughter has a Drs. appt on Thursday, I will go with her and the doc can look at my feet, OK?:}


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    tandy
    (286)

    jellybelly........ 09/10/02 05:51 PM

    Just go slow on the doxy.I'm sure that you are having toxins die off,and one will get worse when this happens....its a herxhiemer reaction or something like that~ I tried the doxy for about a yr for my FM but had to give in and go off them due to alot of stomach issues.(leaky gut)I wish you alot of luck.You may just need to tweek your dose of the doxy back a bit.I only took mine 3 days a week and that brought on some horrific flares!Go slow~Good Luck!
    Best regards,
    Tracey


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    jellybelly
    (658)

    Rosetta 09/10/02 05:54 PM

    It is a PCR/DNA test and is best done in the lab, there are several around the country who do it. It isn't a test done by a regular lab. It is important to have this particular test because it can detect the foot print even after it has gone. Mycoplasma "Incognitus" is so named because it is very good at hiding inside of other cells where it can not be detected, it can be very illusive as it goes about destroying healthy cells and causing the immune system to turn on itself in search for this little bugger:}


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    jellybelly
    (658)

    Thanks Tracey, 09/10/02 05:57 PM

    I was wondering that myself. Maybe the Doxy is fully loaded into my system and I might need to back off a bit. Thanks for the info. Are you trying anything else, a different antibiotic?:}


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    kitkat623
    (75)

    Okay! 09/10/02 06:04 PM

    Glad some of the symptoms are better. Really glad that you are seeing the doc! Be well Jell! Kathy


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    selma
    (294)

    Jelly 09/10/02 06:33 PM

    It looked like 0 posts and So I'm bumping this.

    Hope tomorrow these buggers will be out of there.
    Heard With Gaui it also takes a while to feel better and you feel much worse first.

    Love and huggs, Selma


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    Mouse
    (15)

    Jellybelly, 09/10/02 06:38 PM

    My thoughts and prayers are with you as you go through this. I hope this treatment has successful results for you.

    In Friendship,

    Mickie Mouse


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    jellybelly
    (658)

    Mickie and Selma 09/11/02 06:53 AM

    Thanks guys. Somehow Selma I don't think these little buggers will be gone real soon, but maybe:}


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    jacibart
    (54)

    sounds like die off to me 09/11/02 07:06 AM

    Sounds like what I am going thru with the candida die off, please keep us up to date on how you are doing, I am doing it also but with different products, try lemon juice to help with the herxheimer effect. It helps. You should feel better soon, you will know because there will be no doubt to you when the toxins leave your body, drink a lot of water, as much as you can to help flush out the toxins, sounds like you have killed them but now they gotta get out!!!! Also, immune support is important right now, colostrum is very good for that, in my opinion.
    Good luck, you are on the right track!

    Jaci


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    tandy
    (286)

    Jellybelly..... 09/11/02 09:51 AM

    I truly hope to try another antibiotic in the future.I just really need to get this gut problem at least into recovery~I believe the IBS relief supplements sold here have the "Good" bacteria in them so I'll try those.I think I have many food intolerances too......makes it tough.Any suggestions out there on what may have helped them would be great.I have added the L-glutamine recently.thanks!
    I'd cut it back just a tad jelly-and see if your a little better at that dose.Also I've heard that during the Flare or die off of toxins...if you bathe in the peroxide(I believe a few 16oz bottles added to a full bath)the peroxide will help open the pores so the toxins can be released alot faster.And drink lots of water!Wishing you luck~
    Best regards,
    Tracey


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    jellybelly
    (658)

    Jaci 09/11/02 03:03 PM

    I hope your right about the die off, it will be very cool if that is what's going on. I'm so tired today, can't even think. I will keep you posted and please let me know how you are doing:}


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    mikie
    (3315)



    Moderator Dear Jelly 09/12/02 04:23 AM

    I am praying for you as I know how awful the Herx Effect can be. My healing crises were not like what you have described. I had no swelling or redness, but we are all different. I do get very sick with my Herx, but it's pain, diarrhea, a burning sensation in my torso, and feeling like I have a bad case of the flu. As time goes on and more and more of the Mycoplasmas die off, my Herx effects are much lighter. The first one is a bitch.

    In my other post to you, I mentioned that I use the colloidal silver recommended by Dr. Nicolson. I believe it helps. Probiotics are an absolute must when on the antibiotic treatment. Strangely enough, the antibiotic treatment itself clears up my IBS. It comes back when I have tried to cycle off the antibiotics, even with the probiotics. I've been on the Doxy about a year now.

    I found during a urine infection that I am allergic to Cipro, so that's not an option for me. Some docs prescribe more than one antibiotic at once and some want their patients to cycle with other antibiotics in place of the Doxy. I'm having such good results that I don't want to mess with it.

    You may want to look into the zappers. I am totally confident that they work. There is plenty of scientific basis for their ability to kill off pathogens. If I overuse mine, it will cause a Herx just like the antibiotics. I bought the Dr. Hulda Clark model because it is so well made in Germany and easy to use. Her website has instructions for making one at home, but it must be tested to ensure it is producing the proper wave shape to kill pathogens.

    Well, Sweetie, take care of yourself, drink as much water as you can to rid your body of the wee beasties, and rest. Also keep in mind that as sick as you feel, it is indicative that lots of these little critters have died off.

    Love, Mikie


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    ohmyaching
    (311)

    Hi Jellybelly 09/12/02 06:41 AM

    Thanks for keeping us posted about your treatment. I think of you and many of the others here as pioneers going before me. Wish there were some standard form of treatment. One of the most frustrating things about this illness is the way the symptoms seem to change. I hope your recent symptoms are because of die off due to the fact that you are getting better. The problems with your blood pressure sound a little frightening and I hope your doctor closely monitors you.
    Peace, love and joy.


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    jellybelly
    (658)

    Hi Mikie!!! 09/12/02 07:26 AM

    So nice to hear from you. Are you here to stay? I heard that you lost your mom and if that is true I am so sorry.

    I really do hope this is die off. Before treatment I had a lot of tightness in my ankles and feet. I always need to stretch them out. Also a muscle above my ankles always goes into spasms. All of this area, ankle joint and muscle are what are really showing signs of inflammation. The swelling is usually down considerably first thing in the morning. At that time I can find several sore spots, like a bruise but there is no bruise. I'm going to have my Dr. look at it today.

    I have Colloidal Silver, and I am using Omega Twin. Also the Heparin I take for the Hypercoagulation, boosts the immune system. I need to find the article I was reading on that. What it said if I can remeber was that there are 2 types of immune activity, something like T?1 and T?2. I think one dealt with things like allergies and the other dealt with things like viruses and bacterias. One of those is the area in which we seem to be lacking, and Heparin boosts that particular area and not the other. If this is a die off, it isn't letting up, and hopefully that means I'm moving along at a faster clip.

    One other strange thing. I have had knots in both of my upper arms about mid way. It seems to be scar tissue in the tendons or muscles. At least that is the consensus of my healing support group. Anyway those knots have almost completely disappeared!! Was this another collection of Mycoplasmas?

    Again it was nice to hear from you and I hope you are going to be here more often. I feel lonely out here in Mycoplasma Land all by myself:}


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    mikie
    (3315)



    Moderator Dear Jelly 09/12/02 09:06 AM

    Good to talk to you. Yes, my Mom did pass away from a massive heart attack just three days after my Birthday when my computer was destroyed by a hacker. I expected my Mom to live to be 100 as she was in excellent health and this has been a huge loss. I have been very busy with getting my new system up and running and taking care of Mom's affairs that I decided I could no longer be an effective Moderator. I'm still dealing with my Mom's estate, and my health has not been the best. The stress of everything has brought on some severe flaring. I'm not sure how much I will be around.

    Your symptoms are not anything that I have experienced, so I am at a loss. Perhaps it is just coincidental that some associated symptoms decided to act up at the same time that you have started the antibiotics. These do not seem to be what one usually experiences from an allergic reaction to a drug either. I do hope they are associated with die off and will begin to improve, but I think you are wise to check with the doc.

    There is an article by Dr. Cheney regarding our unbalanced immune response. We underreact to some things and overreact to others because half of our immune system does not work right. I did not realize that Heparin was an effective treatment for this. I know it is used to treat hypercoagulation. I just drink a glass of red wine each day (for medicinal purposes only, of course :) to thin out my blood.

    Again, you are in my prayers. Keep us updated on your progress.

    Love, Mikie




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    ssmarilyn
    (641)

    Good grief Mikie!! 09/13/02 09:33 AM

    I had to look TWICE at the date of these posts to see if I was hallucinating or not! WELCOME BACK!! I see you're still a moderator? You have been SORELY missed around here lady! I don't know why for sure, but I have thought about you on almost a daily basis, wondering how you were doing and wondering if you would ever get back to the board. Shirl sure could use a helping hand I think!

    WELCOME!!!!
    Marilyn :)


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    mikie
    (3315)



    Moderator Dear Marilyn 09/13/02 05:56 PM

    Hi there. Good to talk to you. I don't see how Shirl has managed to moderate these boards by herself, but she has done a great job.

    I've been checking out the board regularly, but as I mentioned, I've just been so busy with everything, I haven't been able to help out with moderating. Right now, I'm really sick with some kind of virus; I hope it's not the West Nile virus; I've had a horrible headache today. I am on the zapper and taking vit. C, zinc, and ecinacea. I've suspended the Guai for a few days as the ecinacea will make it inactive anyway.

    I'm thinking of coming back, but I will not be able to give it the amount of time I did formerly. The board is just getting too big for me to personally greet each newcomer. I am glad to see that there are so many new people coming here for help and support, but I hate the reason they are here.

    It's really good talking to y'all. I've missed you and I appreciate your thinking about me. I'm in therapy dealing with the loss of my Mother and it's taking up a lot of my time, with journaling every day, meditating, etc. Take care. I keep all of you in my prayers every day.

    Love, Mikie


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    jaimy
    (1372)

    Welcome back, Mikie!! 09/13/02 06:13 PM

    You have been sorely missed!!.....yes, Shirl is doing a GREAT job by herself, but it's difficult, I'm sure.....

    I am so sorry about the loss of your mother and your current health issues....if anything could bring you back, it would be those Mycos!! (Glad Jelly has you to talk to...)

    I never got to thank you for all of your help before you left, so I just wanted to do that now....it meant the world to me!! I am doing a lot better, both physically and emotionally (I still research, but it's an actual 'job' now...lol)

    Please take care of yourself!! and DO drop in to let us know how you are doing if you have the time...

    Love,
    Jaimy

    [This Message was Edited on 09/13/2002]


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    Shirl
    (3633)



    Moderator
    [ edit | delete ] Hello Lady!!! 09/13/02 07:39 PM

    Mikie, Glad you jumped in , I am about as lost with this Mycoplasma as a fish out of water! Plus I don't have the time to study up on it, it is so involved!

    I bought the the book by Dr. St. Amand, but have only skimmed through it. No help from me in this area at all.

    Hope you do find time to help when you can, miss you a lot.

    Shalom, Shirl




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    mikie
    (3315)



    Moderator Thank You 09/14/02 06:19 AM

    Jaimie, thanks for your sweet words. It is you who has been so helpful with all your research. I am so happy for you that you can work in an area you love. Few are able to do that. Good luck.

    Dear Shirl, it's a little premature for me to definitely say I'm back helping you with moderating yet. As you know, I have written to James to see if it will work out for ProHealth. You have done an outstanding job and I can only imagine how difficult it has been for you. Everyone owes you a debt of gratitude for all you have done. I have missed working with you these last couple of months and I have missed all my friends here.

    Jelly, I am glad to see that you are keeping the subject of mycoplasmas in the forefront because I believe infectious factors are major players in our illnesses. There are possibly other bacteria and some viruses, which are stealth in the body, which are causing all kinds of illnesses. In fact, some of the profits from ProHealth are being used to fund research in the area of infectious factors. I'm just sorry you are having such a hard time of it right now. I pray that you improve.

    One of the greatest dangers of stealth pathogens is that they can lead to autoimmune illnesses due to the nature of how they kill off host cells when they reproduce. I believe that is why so many with diseases like MS and Lupus also have FMS. BTW, mycoplasmas are found in higher than normal concentrations in people with these illnesses too. As debilitating as our illnesses can be, autoimmune diseases take health risks to a much higher level. It is for this reason that I am adamant about ridding my body of the mycoplasma infection. Also, the antibiotics have had a tremendously positive improvement on several of my symptoms: IBS, sore throats, swollen nodes, and migraine-type headaches.

    Love, Mikie


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    jellybelly
    (658)

    Bumping 09/14/02 11:48 AM

    for Stephanie


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  2. Shirl

    Shirl New Member

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    jellybelly
    (658)



    UPDATE: on my Mycoplasma treatment with Doxycycline. Is this progress? 09/10/02 05:17 PM

    For those of you who don't know me, I have had CFS/FM for 22 years. It began with a case of Mycoplasma Pnuemonia. It was pretty insignificant then, but became more important about two years when my Dr. started telling me about Mycoplasma's. I dragged my feet for about 2 years and then deceided to get tested at the lab in LA. I came back POSITIVE not only for the Mycoplasma P. but for Mycoplasma Fermentans (Incognitus). I started treatment about 2 1/2 months ago. This is what has been happening.

    I have been pretty much pain and fatigue free for about 8 years, but that was only due to the meds that treat each of my symptoms. Now with a possible cause I was started on Doxycycline. Nothing happened till about the 8th day, when I became extremely weak and fatigued. My blood pressure was very low, sometimes to low to even pick up with the blood pressure cuff I have, when it did pick up it was 90/60 while standing. My heart rate was 145 while resting. I spoke with my cardiologist who sent me straight to the ER. There it was found I was running a temp of 101 which I rarely ever do. I can remeber only about 3 times in my life running a fever. I was having difficulty breathing, my lungs just felt irritated, ki8nd of stiff like they sometimes do during a flair. They did a chest xray and found nothing. Well all this kind of scared me and I went off the Doxy.

    I started back up after about a week, and felt pretty ok. Except for the fact that I had some redness around my toes on both feet, they were slightly swollen. This condition has slowly worsened and spread all through my feet and ankles and sometimes my knees. My feet would swell like balloons, they were red and feverish. No pain really and no itching. I've been feeling a little run down, I have to nap every day and go to bed very early.

    Well I got a little worried again and stopped taking the Doxy last Thursday nite. Slowly a little each day the swelling decreased. I called my Dr. and heard from him today. He wants me to start back up and continue through till the end of the third month. He is suspecting that the Doxy is in fact making headway and may be killing of Mycoplasma that has settled into these joints. It is interesting because I have a lot of stiffness in my feet and ankles, and I also get a lot of cramps in the muscle right abouve my ankle. This muscle also got very red and feverish on both legs.

    If my feet swell again I will go in for the Dr. to look at it and possibly run some more tests for RA and Lupus just to make sure it's not that. I've been tested for both of these probably 10 times each, but that is also always a possibility.

    So that's where I am at, something is definetly going on. Hopefully it is the Mycoplasma dieing off and releasing toxins. The longer you have this DD the longer it is expected to bring it under control. Flairs are also expected. So we'll see and I'll keep you posted if anything new happens:}

    [This Message was Edited on 09/10/2002]


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    kitkat623
    (75)

    Wow! 09/10/02 05:39 PM

    I'm so sorry to read that you're going through such a stormy patch. Sorry...and a little worried. Is it just possible that you have an allergy to this medicine? A bad allergic reaction can drop your blood pressure like that. May I be so bold as to suggest a second opinion? Don't want to offend, but this sounds a little scary to me. Hope one of our nurses will come along and give you better advice than I can. I do feel somewhat concerned for dear Jelly! Please keep us posted. Kitkat a.k.a. Carob Kate


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    rosetta
    (22)

    Test 09/10/02 05:48 PM

    What kind of test did they do to determine that you were positive for Mycoplasma P. and Mycoplasma Fermentans (Incognitus).


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    jellybelly
    (658)

    Try not to worry little Carob Kate! 09/10/02 05:50 PM

    My blood pressure is normal after that day, heart rate is much lower. Low blood pressure and rapid heart beat can also be due to infection.

    I don't think it's allergy to the Doxy, I've looked up possible reactions and this isn't one of them. It also comes and goes, I can be all swelled up then it goes away for maybe a week or so. That doesn't sound like allergy does it? Nothing else on me is swelling not my hands or anything.

    Thanks for your concern and I am very cautious as I go a long. After 22 years of this crappy thing I'm pretty aware of myself. I do feel like I am in a flair though, all the usual problems for me, feel like I'm running a fever but nothing, lips are peeling again, eyes are burning and I'm pooped. My daughter has a Drs. appt on Thursday, I will go with her and the doc can look at my feet, OK?:}


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    tandy
    (286)

    jellybelly........ 09/10/02 05:51 PM

    Just go slow on the doxy.I'm sure that you are having toxins die off,and one will get worse when this happens....its a herxhiemer reaction or something like that~ I tried the doxy for about a yr for my FM but had to give in and go off them due to alot of stomach issues.(leaky gut)I wish you alot of luck.You may just need to tweek your dose of the doxy back a bit.I only took mine 3 days a week and that brought on some horrific flares!Go slow~Good Luck!
    Best regards,
    Tracey


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    jellybelly
    (658)

    Rosetta 09/10/02 05:54 PM

    It is a PCR/DNA test and is best done in the lab, there are several around the country who do it. It isn't a test done by a regular lab. It is important to have this particular test because it can detect the foot print even after it has gone. Mycoplasma "Incognitus" is so named because it is very good at hiding inside of other cells where it can not be detected, it can be very illusive as it goes about destroying healthy cells and causing the immune system to turn on itself in search for this little bugger:}


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    jellybelly
    (658)

    Thanks Tracey, 09/10/02 05:57 PM

    I was wondering that myself. Maybe the Doxy is fully loaded into my system and I might need to back off a bit. Thanks for the info. Are you trying anything else, a different antibiotic?:}


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    kitkat623
    (75)

    Okay! 09/10/02 06:04 PM

    Glad some of the symptoms are better. Really glad that you are seeing the doc! Be well Jell! Kathy


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    selma
    (294)

    Jelly 09/10/02 06:33 PM

    It looked like 0 posts and So I'm bumping this.

    Hope tomorrow these buggers will be out of there.
    Heard With Gaui it also takes a while to feel better and you feel much worse first.

    Love and huggs, Selma


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    Mouse
    (15)

    Jellybelly, 09/10/02 06:38 PM

    My thoughts and prayers are with you as you go through this. I hope this treatment has successful results for you.

    In Friendship,

    Mickie Mouse


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    jellybelly
    (658)

    Mickie and Selma 09/11/02 06:53 AM

    Thanks guys. Somehow Selma I don't think these little buggers will be gone real soon, but maybe:}


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    jacibart
    (54)

    sounds like die off to me 09/11/02 07:06 AM

    Sounds like what I am going thru with the candida die off, please keep us up to date on how you are doing, I am doing it also but with different products, try lemon juice to help with the herxheimer effect. It helps. You should feel better soon, you will know because there will be no doubt to you when the toxins leave your body, drink a lot of water, as much as you can to help flush out the toxins, sounds like you have killed them but now they gotta get out!!!! Also, immune support is important right now, colostrum is very good for that, in my opinion.
    Good luck, you are on the right track!

    Jaci


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    tandy
    (286)

    Jellybelly..... 09/11/02 09:51 AM

    I truly hope to try another antibiotic in the future.I just really need to get this gut problem at least into recovery~I believe the IBS relief supplements sold here have the "Good" bacteria in them so I'll try those.I think I have many food intolerances too......makes it tough.Any suggestions out there on what may have helped them would be great.I have added the L-glutamine recently.thanks!
    I'd cut it back just a tad jelly-and see if your a little better at that dose.Also I've heard that during the Flare or die off of toxins...if you bathe in the peroxide(I believe a few 16oz bottles added to a full bath)the peroxide will help open the pores so the toxins can be released alot faster.And drink lots of water!Wishing you luck~
    Best regards,
    Tracey


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    jellybelly
    (658)

    Jaci 09/11/02 03:03 PM

    I hope your right about the die off, it will be very cool if that is what's going on. I'm so tired today, can't even think. I will keep you posted and please let me know how you are doing:}


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    mikie
    (3315)



    Moderator Dear Jelly 09/12/02 04:23 AM

    I am praying for you as I know how awful the Herx Effect can be. My healing crises were not like what you have described. I had no swelling or redness, but we are all different. I do get very sick with my Herx, but it's pain, diarrhea, a burning sensation in my torso, and feeling like I have a bad case of the flu. As time goes on and more and more of the Mycoplasmas die off, my Herx effects are much lighter. The first one is a bitch.

    In my other post to you, I mentioned that I use the colloidal silver recommended by Dr. Nicolson. I believe it helps. Probiotics are an absolute must when on the antibiotic treatment. Strangely enough, the antibiotic treatment itself clears up my IBS. It comes back when I have tried to cycle off the antibiotics, even with the probiotics. I've been on the Doxy about a year now.

    I found during a urine infection that I am allergic to Cipro, so that's not an option for me. Some docs prescribe more than one antibiotic at once and some want their patients to cycle with other antibiotics in place of the Doxy. I'm having such good results that I don't want to mess with it.

    You may want to look into the zappers. I am totally confident that they work. There is plenty of scientific basis for their ability to kill off pathogens. If I overuse mine, it will cause a Herx just like the antibiotics. I bought the Dr. Hulda Clark model because it is so well made in Germany and easy to use. Her website has instructions for making one at home, but it must be tested to ensure it is producing the proper wave shape to kill pathogens.

    Well, Sweetie, take care of yourself, drink as much water as you can to rid your body of the wee beasties, and rest. Also keep in mind that as sick as you feel, it is indicative that lots of these little critters have died off.

    Love, Mikie


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    ohmyaching
    (311)

    Hi Jellybelly 09/12/02 06:41 AM

    Thanks for keeping us posted about your treatment. I think of you and many of the others here as pioneers going before me. Wish there were some standard form of treatment. One of the most frustrating things about this illness is the way the symptoms seem to change. I hope your recent symptoms are because of die off due to the fact that you are getting better. The problems with your blood pressure sound a little frightening and I hope your doctor closely monitors you.
    Peace, love and joy.


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    jellybelly
    (658)

    Hi Mikie!!! 09/12/02 07:26 AM

    So nice to hear from you. Are you here to stay? I heard that you lost your mom and if that is true I am so sorry.

    I really do hope this is die off. Before treatment I had a lot of tightness in my ankles and feet. I always need to stretch them out. Also a muscle above my ankles always goes into spasms. All of this area, ankle joint and muscle are what are really showing signs of inflammation. The swelling is usually down considerably first thing in the morning. At that time I can find several sore spots, like a bruise but there is no bruise. I'm going to have my Dr. look at it today.

    I have Colloidal Silver, and I am using Omega Twin. Also the Heparin I take for the Hypercoagulation, boosts the immune system. I need to find the article I was reading on that. What it said if I can remeber was that there are 2 types of immune activity, something like T?1 and T?2. I think one dealt with things like allergies and the other dealt with things like viruses and bacterias. One of those is the area in which we seem to be lacking, and Heparin boosts that particular area and not the other. If this is a die off, it isn't letting up, and hopefully that means I'm moving along at a faster clip.

    One other strange thing. I have had knots in both of my upper arms about mid way. It seems to be scar tissue in the tendons or muscles. At least that is the consensus of my healing support group. Anyway those knots have almost completely disappeared!! Was this another collection of Mycoplasmas?

    Again it was nice to hear from you and I hope you are going to be here more often. I feel lonely out here in Mycoplasma Land all by myself:}


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    mikie
    (3315)



    Moderator Dear Jelly 09/12/02 09:06 AM

    Good to talk to you. Yes, my Mom did pass away from a massive heart attack just three days after my Birthday when my computer was destroyed by a hacker. I expected my Mom to live to be 100 as she was in excellent health and this has been a huge loss. I have been very busy with getting my new system up and running and taking care of Mom's affairs that I decided I could no longer be an effective Moderator. I'm still dealing with my Mom's estate, and my health has not been the best. The stress of everything has brought on some severe flaring. I'm not sure how much I will be around.

    Your symptoms are not anything that I have experienced, so I am at a loss. Perhaps it is just coincidental that some associated symptoms decided to act up at the same time that you have started the antibiotics. These do not seem to be what one usually experiences from an allergic reaction to a drug either. I do hope they are associated with die off and will begin to improve, but I think you are wise to check with the doc.

    There is an article by Dr. Cheney regarding our unbalanced immune response. We underreact to some things and overreact to others because half of our immune system does not work right. I did not realize that Heparin was an effective treatment for this. I know it is used to treat hypercoagulation. I just drink a glass of red wine each day (for medicinal purposes only, of course :) to thin out my blood.

    Again, you are in my prayers. Keep us updated on your progress.

    Love, Mikie




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    ssmarilyn
    (641)

    Good grief Mikie!! 09/13/02 09:33 AM

    I had to look TWICE at the date of these posts to see if I was hallucinating or not! WELCOME BACK!! I see you're still a moderator? You have been SORELY missed around here lady! I don't know why for sure, but I have thought about you on almost a daily basis, wondering how you were doing and wondering if you would ever get back to the board. Shirl sure could use a helping hand I think!

    WELCOME!!!!
    Marilyn :)


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    mikie
    (3315)



    Moderator Dear Marilyn 09/13/02 05:56 PM

    Hi there. Good to talk to you. I don't see how Shirl has managed to moderate these boards by herself, but she has done a great job.

    I've been checking out the board regularly, but as I mentioned, I've just been so busy with everything, I haven't been able to help out with moderating. Right now, I'm really sick with some kind of virus; I hope it's not the West Nile virus; I've had a horrible headache today. I am on the zapper and taking vit. C, zinc, and ecinacea. I've suspended the Guai for a few days as the ecinacea will make it inactive anyway.

    I'm thinking of coming back, but I will not be able to give it the amount of time I did formerly. The board is just getting too big for me to personally greet each newcomer. I am glad to see that there are so many new people coming here for help and support, but I hate the reason they are here.

    It's really good talking to y'all. I've missed you and I appreciate your thinking about me. I'm in therapy dealing with the loss of my Mother and it's taking up a lot of my time, with journaling every day, meditating, etc. Take care. I keep all of you in my prayers every day.

    Love, Mikie


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    jaimy
    (1372)

    Welcome back, Mikie!! 09/13/02 06:13 PM

    You have been sorely missed!!.....yes, Shirl is doing a GREAT job by herself, but it's difficult, I'm sure.....

    I am so sorry about the loss of your mother and your current health issues....if anything could bring you back, it would be those Mycos!! (Glad Jelly has you to talk to...)

    I never got to thank you for all of your help before you left, so I just wanted to do that now....it meant the world to me!! I am doing a lot better, both physically and emotionally (I still research, but it's an actual 'job' now...lol)

    Please take care of yourself!! and DO drop in to let us know how you are doing if you have the time...

    Love,
    Jaimy

    [This Message was Edited on 09/13/2002]


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    Shirl
    (3633)



    Moderator
    [ edit | delete ] Hello Lady!!! 09/13/02 07:39 PM

    Mikie, Glad you jumped in , I am about as lost with this Mycoplasma as a fish out of water! Plus I don't have the time to study up on it, it is so involved!

    I bought the the book by Dr. St. Amand, but have only skimmed through it. No help from me in this area at all.

    Hope you do find time to help when you can, miss you a lot.

    Shalom, Shirl




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    mikie
    (3315)



    Moderator Thank You 09/14/02 06:19 AM

    Jaimie, thanks for your sweet words. It is you who has been so helpful with all your research. I am so happy for you that you can work in an area you love. Few are able to do that. Good luck.

    Dear Shirl, it's a little premature for me to definitely say I'm back helping you with moderating yet. As you know, I have written to James to see if it will work out for ProHealth. You have done an outstanding job and I can only imagine how difficult it has been for you. Everyone owes you a debt of gratitude for all you have done. I have missed working with you these last couple of months and I have missed all my friends here.

    Jelly, I am glad to see that you are keeping the subject of mycoplasmas in the forefront because I believe infectious factors are major players in our illnesses. There are possibly other bacteria and some viruses, which are stealth in the body, which are causing all kinds of illnesses. In fact, some of the profits from ProHealth are being used to fund research in the area of infectious factors. I'm just sorry you are having such a hard time of it right now. I pray that you improve.

    One of the greatest dangers of stealth pathogens is that they can lead to autoimmune illnesses due to the nature of how they kill off host cells when they reproduce. I believe that is why so many with diseases like MS and Lupus also have FMS. BTW, mycoplasmas are found in higher than normal concentrations in people with these illnesses too. As debilitating as our illnesses can be, autoimmune diseases take health risks to a much higher level. It is for this reason that I am adamant about ridding my body of the mycoplasma infection. Also, the antibiotics have had a tremendously positive improvement on several of my symptoms: IBS, sore throats, swollen nodes, and migraine-type headaches.

    Love, Mikie


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    jellybelly
    (658)

    Bumping 09/14/02 11:48 AM

    for Stephanie


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  3. selma

    selma New Member

    I do believe that you have to change or take something to control the side effects. Have you tried antihistamines with Doxy.? Have you tried diruetics Mikie to get rid of the fluid? How are your kidneys and liver? Are you amemic? Soo many questions??

    I'm sending my love and prayers, Selma
  4. Mikie

    Mikie Moderator

    It is Jelly who is having the problems with fluid retention. I have had no side effects from taking the Doxy. In fact, many of my symptoms have improved since being on it. The only problem I am having is some elevated liver function tests. They have ruled out Hepatitis. I have to get a blood test next week to see whether the liver tests are still abnormal. If they are, I will most likely have to have further testing. I'm keeping my finger crossed. Thanks for your prayers and kind thoughts.

    Love, Mikie
  5. James

    James Guest

    here you go jellybean
  6. Elvira

    Elvira New Member

    Hi Jelly,

    Definitely sounds to me like the mycoplasmas are dying off. Once they are flushed out of your system you should start feeling better. I sure hope that's what's going on with you. I was going to ask my doctor about trying doxycycline too. You mentioned that you had been nearly pain and fatigue free for almost 8 years due to the medications you had been taking for your symptoms. Can you tell me what they are that helped you? I am interested in discussing new medications with my doctor. Thanks, rest, and take care of yourself.
  7. ssMarilyn

    ssMarilyn New Member

    For the info!

    Marilyn
  8. Elvira

    Elvira New Member

    Here ya go!
  9. JaciBart

    JaciBart Member

    I am doing a cleansing thing using probiotics and a zapper every day, I take about every 3rd day off just to feel decent but then back on it, having success, getting rid of a lot of poisons it seems.

    Hopefully it will help.

    Jaci
  10. Pixie_Dupree

    Pixie_Dupree New Member

    Hello Jelly...

    I am being treated with an antibiotic called Cipro...

    I am experiencing some of the same side effect's that you are...swollen ankle's...fever...s.o.b.
    One thing I did learn is that if I stopped caffine the s.o.b. went away...also,I was 95% bed ridden and using a cane before I started this treatment...the antibiotcs are stopping the fibromyalgia symptoms...I am able to get dresses and do my Pilates routine(carefully)i am able to drive again...there is so much more to tell you...basically I have my life back in some degree again...I am so thankful to God that I stumbled onto this study,and asked my doctor to let me try it...

    I hope that you will have great success with this treatment.
    I'm also very glad that I found your site.
  11. Mikie

    Mikie Moderator

    Dear Dancersmom,

    The Herxheimer effect is also cometimes called a healing effect. When the parasites die off in large numbers, it overwhelms the body which is trying to purge them. If the body cannot rid itself of the dead critters, they produce a toxin which makes one feel as though one has a bad case of the flu. This is why drinking lots of water is imperative when on antibiotics, using a zapper, etc.

    The Herx manifests itself a little differently in each person, but it definitely is a good sign. My first was the worst but I still get them from time to time as they kill off critters in my body. I will also get a Herx if I use my zapper overtime to kill off a virus.

    Love, Mikie
  12. Elvira

    Elvira New Member

    I really appreciate all the info on the meds. I will certainly discuss all of them with my dr. next week. I believe that I have Raynauds, too, as my fingers, toes, nose and ears are usually ice cold. I probably have the hypercoagulation, too. I'm sure those meds will make a big difference. I hate being cold all the time!

    I am taking lots of supplements, too, and I joined e-diets 2 months ago, so am eating much healthier as well. I sleep about 8 hrs. a night, but would do more if I didn't have to get up for work!

    Thanks again, and I'll let you know how it goes. :)