Mikie and Mycoplasma

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, May 6, 2011.

  1. cherylsue

    cherylsue Member

    Hi Mikie,

    I haven't posted here in a few years, but I remember your kind words and knowledge well.
    I have been working and participating in the land of the living, treating for Lyme Disease and other infections.

    I have been in a relapse the past few weeks. My loving doctor checked my Lyme, EBV, and other things, and said my Mycoplasma Pneumonia reactivated and the other things were okay. To come so far, and to be bought so low!

    I'm a teacher and am not sure I'll be back before the end of the year.

    My doc put me back on doxycycline which used to be my favorite drug. However, I think I build up a resistance to it, because it's not working like it had and just giving me insomnia, anxiety, and just doing nothing. I've had several rounds at various times in the past.

    I tried 1/2 of a 250 mg. azithromycin pill last night. It let me sleep for 5 hours straight before I woke up in a stinky night sweat, but I felt a little better. Slept another couple of hours and woke up in another night sweat.

    How long does it take to get the myco under control when it flares up? I had brought my titers lower in December when I was tested. I was eating a lot of high arginnine foods such as nuts and sugarless chocolate. (I had quit chocolate for 3 years, but took it up again because I could tolerate it)

    Have you personally gotten your mycoplasma pneu. under control? What do you do to manage it?

    My myco gives me flulike fatigue and malaise, burning skin, and muscle aches.

    Thanks for your input. I remember you fondly.

  2. Mikie

    Mikie Moderator

    First, I am so very sorry that the mycoplasma infection has reactivated. If the Azithromycin seems to work better, why not ask your doc to prescribe it. Sometimes it is good to change things up to keep the pathogens off their game. I would take it six weeks and then try to go two weeks off of it. If you cannot, don't wait the two weeks; go back on it right away and try again after another six weeks on it. Of course, you should discuss this treatment plan with your doc. Mycoplasmas are one of the most tenatious bacteria and you have to use a sledge hammer to control them. When you can stay off the ABX with no symptoms, you can stop.

    It's really important to get this under control because when the mycoplasmas replicate and break out of the blood cell, they drag a bit of our DNA with them. If the body starts to identify our DNA, along with the mycoplasma, as foreign, an autoimmune illness can ensue. That is what Dr. Garth Nicolson told me in an e-mail when I was in contact with him.

    Sure enough, I now have Sjogren's Syndrome. Whether it was caused by the mycoplasmas is unknown but it is horrible and has me almost back to square one in how sick I am.

    Good luck to you and let us know how you are doing. It's so discouraging to get our illnesses under control only to get knocked down again. You are in my prayers.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    Bumpity, bump, bump :)
  4. munch1958

    munch1958 Member

    Hi CherylSue!

    I had posted here the other day asking if others have SIJD (sacro iliac joint dysfunction) so I'm checking back to see if I had any replies.

    As far as Myco P, I got an equiv test for that and CPN. I keep coughing up lung goo. I get a flare of symptoms in the winter and so far Rifampin keeps it under control. Did I seem to remember you having strong thoughts on Rifampin? or was that my brother?

    Seems my winter protocol has to be Rifampin and in the summer I need Mino. Go figure! I take 500 mg of the dreaded Flagyl 2x a week usually Mon & Thur, Zith 250 mg on MWF pm and one 200 mg Mino on MWF pm while dropping the Rifampin on those 3 days. I also do 2 IM Claforan shots a week but maybe should consider going back to daily?! I don't know. Had to miss my appointment with Dr M because of my surgery.

    I'm now getting some GERD and indigestion back and thinking of dropping the Rifampin in favor of something else. I was NOT a fan of Clindy but the ortho who did my surgery 3 weeks ago gave me that after I went to Gainsville GA to have my SIJ repaired. Got a wicked herx from the IV Clindy and the oral for 3 days post-op which is exactly what I needed at that moment.

    I am now the proud owner of some mighty fine a$$ hardware which has thus far fixed my severe hip pain. I got 3 titanium rods on the left and 2 screws on my right. I am the ONLY patient out of 4,000+ cases to go home the same day. It was almost a drive thru surgery by golly. That's how much I love hospitals.

    As far as Myco P goes, the FFC told me, that is almost impossible to get rid of it. Thanks Dr M! I have zero quality of life without the abx so I continue to take them. I will await Mikie's knowledgeable reply.
  5. munch1958

    munch1958 Member

    I'm so sorry that you are feeling crummy. That explanation from Dr N makes a lot of sense. I am beginning to believe that our DNA combines with this crud and we can only control symptoms but never truly be rid of it. I hope you find a treatment for the Sjorgen's that helps.
  6. Mikie

    Mikie Moderator

    Good to hear from you. Actually, I'm currently cleaning up my diet so I can start peptide injections. They are supposed to reverse, or cure, immune and auto-immune illnesses. I never say the "C" word, though. I'd be happy just to have my illnesses go into remission.

    Thanks for the good wishes. I hope you are doing well. You've been through a lot. If one cannot stay off the ABX, it is important to take them. Otherwise, the bacteria take over. Let us know how you are doing. I'm impressed with your post-surgery progress.

    Love, Mikie
    [This Message was Edited on 05/07/2011]
  7. cherylsue

    cherylsue Member

    Dear Mikie,

    I'm sorry you now have an autoimmune disease. I hope those peptide injections work for you, and I'll be following your progress. God bless.

    Thank you so much for the good advice regarding azithryomycin and dosing. That sounds like somthing my Dr. M would do. Munch and I share the same doctor, and she understands.

    Dear Munch,
    I'm glad your surgery went well. I was a little fuzzy about what was happening to you, but you explained it well in the above post. Are you still in pain? Do you have to go for rehab or physical therapy? I take it your home now. Hugs to you.

    Ten days of doxycycyline did nothing beneficial for me but give me insomnia. Upon my doctor's suggestion, I started with low dose azith 1/2 of 250 mg two nights ago. The first night I had two night sweats. The second night I slept 6 hours straight (good for me). Although I have some nausea and awful flulike herxing which I try to relieve with lemon water and microwavable "bed buddies", a strange thing happened today. I've been having muscle aches which are new, but so far my burning skin isn't as prominent. It's like the drug is taking over one thing, and giving me another. I am also running a 99 fever which I have been since I relapse 2 1/2 weeks ago.

    Do you think the azith might be working? Would it work that fast? Should I ramp up to a full pill? I think I'll wait until tomorrow night for that. Day herxing is rather uncomfortable.

  8. cherylsue

    cherylsue Member

  9. Mikie

    Mikie Moderator

    How you are doing on the AZ. There's no telling whether it worked fast or whether the Doxy was working and you didn't feel it. Sometimes, the bacteria will try to hold the fort and when a new ABX comes along, they are caught off guard. Pathogens, especially the ones which go stealth and chronic, are very smart and fight with everything they have to stay alive. It is also my belief that they manipulate our bodies in order to thrive in a low-oxygen environment. In people with long-term, chronic infections, it is not unusual to have excess fibrin in the bloodstream. Platelets are caught up in the fibrin, causing a low oxygen environment. The pathogens live in these clumps of platelets and fibrin. When Heparin, or the OTC enzyme, Nattokinase, is introduced, the fibrin breaks up and the pathogens are exposed to the immune system. At that point, the immune system will often wake up and go after the pathogens. I had worse Herxheimer effects from the Heparin injections than I ever did with the Doxy.

    There is a panel of blood tests done at HEMEX Labs for the fibrin but my ins. wouldn't pay for it. My doc and I did everything empirically, on the cheap. If one has a very how sed rate, it is indicitive that there might be excess fibrin. My sed rate was a 1 at one point. After heparin was no longer available outside hospital settings, I switched to the Nattokinase and, as my research promised, it worked even better.

    Chronic infections are serious and I look at the pathogens as little terrorists, wanting to take over my body in order to survive. I guess one could look at them as aliens from a dying planet looking for a new world to take over and live in. Whatever helps one visualize the warfare against them. I also think we have to fight them on as many fronts as possible. I took transfer factors which also caused very strong Herxes. I don't know what the status is on them as the company which made them back then stopped production. Spacee used them too.

    Again, good luck to you.

    Love, Mikie
  10. cherylsue

    cherylsue Member

    Well, first of all I made sure I did not have the generic zith, but the brand name from Pfizer. I read on another board that brand names for such drugs such as zith and Flagyl were important because there was better tolerance.

    Azith seems to be doing something that the doxycycline was not. I have been on healthy doses off 200mgBID of Doxycycline and doses of tetracycline over the past 3 1/2 years treating Lyme Disease. I was on medical disabilty and bedridden for 2 years and used to frequent this board regularly. I went back to work almost 3 years ago. It was tough at first, but I've had two Lyme specialists who helped me.

    It did have its ups and downs, and I've had some minor relapses along the way, but this one is by far the most traumatic one. My current LLMD ran some extensive blood lab work, and her conclusion was that the mycoplasma pneumonia was a significant issue. I recalled that you had a serious issue with it as well.

    Two years ago I had darkfield blood microscopy done by a naturopath. She was somewhat of a quack, but I do have a video recording of my blood under the microscope. She told me that I had significant mycloplasma as evidenced in my mishapen and infected blood cells. The couldn't tell my what type I had, but that I had some big time, and that no mycoplasma was good. Utube videos pm;ome also identified mycoplasma darkfield microsocopy such as I had, so I think she was correct.

    I mentioned this to my LLMD at the time, and he was unconcerned. He was a top specialist in the Midwest. I later found my present LLMD closer to home in Illinois. After labs, she thought my my myco pneu. titers were too high and wanted me to bring them down. She is concerned, and she is the one who thinks my present relapse is due to the myco. The Lyme, EBV, & Babesia are seemingly under control.

    Currently, I am pulsing the azith. With a pill cutter I divide the 250 mg.pill into quarters. I was taking 1/2 pill a day originally, but the cytokine storm or herx was intolerable. My doctor told me to cut back to every other day and ramp up slowly. Last night I slept 10 hours, the previous night, three. Doxycycline was making me feel poisoned. I was wired, but tired, insomniac, and running a 99.4 temp. At least the azith makes me feel very tired, but I can sleep.

    To help with herxing, I've been drinking freshly squeezed Lime juice with truvia sweetenr several times a day. I have microwavably "bed buddies" to cope with the muschle aches and horrible flulike feelings.

    That's my long-winded story. I guess we're always vulnerable with these illnesses, even when we come so far. However, during my remission period I was able to see my daughter get married, and I have a handsome little grandson. There have been blessings, too.

    Hopefully, Mikie, you will get to the point of feeling well again. I'm sorry you are going through a tough time, too.

    God bless,
  11. Mikie

    Mikie Moderator

    I hope and pray for good health for you too. I'm glad you had a remission for the wedding and now you have a little grandson. How old is he? Mine is almost six already. How the time flies.

    Sounds to me as though you have things well under control. Dr. Cheney wrote a great article on our immune systems and how one side overreacts and one side underreacts. Many of us seldom get viruses and colds but we have horrible chronic, stealth bacterial, viral, and/or fungal infections.

    The more we know, the better we are able to gain control over these infections. Best of luck to you.

    Love, Mikie
  12. cherylsue

    cherylsue Member

    My grandson is two and half. He's so adorable. He wants you to notice him and will come up and peer into your eyes. When he has your attention he smiles, and will say a little something. He's so happy when he comes over to see Nana and Papa. He makes my so happy, too.

    I'm so exhausted today. Yesterday, I had a cytokine herxing party, and today I was wiped out after my face burned last night. It's so cyclical. I think I may be improving and then the next day BAM.

    How long does it take YOU to improve when you were on abx? Is your mycoplasma under controL?

    I'm in a relapse since April 19th. I keep hoping for improvement or some sign I'll move past this. What can I expect? I'm on 1/4 to 1/2 pill 250 mg of azithromycin. I revisit my LLMD next Wednesday.

  13. Mikie

    Mikie Moderator

    Your grandson sounds adorable. I remember when Andy was that age. It's fun too when they start to do even more things. Andy is big into making jokes now and they are really funny.

    Dr. Nicolson found that it takes at least six months on ABX to get the mycos under control. Toward the end of that period, one is usually pulsing off of them as long as one can until symptoms return. The Herxing should get more tolerable as fewer and fewer pathogens die off. The reason Herxes are cyclic is because the mycos are all replicating at the same time and entering the bloodstream together. That's when the ABX go to work and, voila, a big dieoff. As uncomfortable as Herxing is, I always tried to keep in mind that it's a sign the ABX are working.

    Hang in there, my friend; it'll get better.

    Love, Mikie
  14. cherylsue

    cherylsue Member

    Thanks for the encouragement. I'm just not sure when I can return to work. I'd like to go back before the end of the school year, but my illness is so erratic. Maybe, half days?

    This, of course, is a relapse. Doe relapses get worse each time? Shouldn't they be milder? I haven't had a relapse in two years. Tha last relapse was when school was out, and it lasted all summer. I returned to school, but it was rough. It eventually subsided, but I was on ceftin for Lyme. It doesn't touch myco at all.

    The irony is that when I was retested last December my myco titers were going down, and I was feeling better. I was taking lauricidin, Guna homeopathies for viruses, and of course, ceftin and nystatin. After moving my mother twice last year from one assisted living to another, a root canal, etc. my body started giving out in March. I could feel little warning signs, but I thought I was on abx and I'd be all right.

    I guess, Myco and a compormised immune system can happen any time.

    Thank you for all your encouragement. I'm sticking with azithromycin regardless of the herxing. It's my only out.

    Can you build up resistance to doxycycline? I had been on/off it and tetracycline for over 3 years. I've relapses while on doxy, so I don't think it is helpful anymore. I keep a log of meds, symptoms, etc.

    You take care, too. My hugs to you.

  15. heapsreal

    heapsreal New Member

    You can try minocycline, it has better tissue penetration then doxy, supposedly.

  16. Mikie

    Mikie Moderator

    Some of us do better on one ABX and another. Minocin wasn't available when I started out and the Doxy was working for me.

    Relapses can happen any time we get run down, stressed out, sick with something else, or injured. Our illnesses can be like the perfect storm. If enough things come together at the same time, we can relapse hard. Also, it always possible we have picked up another condition. I don't want to sound discouraging but I thought I was in a long relapse until the symptoms of the Sjogren's Syndrome got more severe. With three conditions, I feel as though I've been in the worst remission since I got so sick 11 years ago.

    I set up an appt. to see the doc so he can order the peptide injections. I won't start until the middle of June. It's more of a financial decision than a physical one to wait. Also, the longer I'm on this healthier diet, the better I'm starting to feel. I want to get myself built up a bit before I start the injections to give them the best chance to work.

    Please keep us updated on how you're doing. As always, you are in my prayers.

    Love, Mikie
  17. cherylsue

    cherylsue Member

    My prayers for you that the peptide injections are hellpful and that you can find relief.

    What are you doing for yourself now that gives you relief and mitigate the pain/discomfort? Any tips on how to get through?

  18. Mikie

    Mikie Moderator

    I've always believed that stress and lack of sleep are the worst things for us. The BP med which controls my hypertension also has a side effect of diminishing norepinephrine in the brain. This interfers with my sleep. I went through a whole bunch of BP meds before I found one which controls my BP with a side effect which, while problematic, is the least problematic of the others. The Klonopin still helps me sleep and the longer I'm on my BP med, the more I've adjusted to it. So, Klonopin continues to be one of the cornerstones of my regimen.

    I've also gone back to the methylation protocol and it helps with sleep. BTW, the Klonopin also helps with pain. I don't like the way opiates make me feel so I just take ibuprophen or acetaminaphen. The Guai has always helped me and when I'm in a flare, I double up on the dose. Even with that, the doc could still feel some FMS debris in my arms so I think I'll keep the dose up. He said my deposits are in a strange lateral pattern but, otherwise, I present with classic cases of all three of my illnesses.

    I have found that if I set up conditions in my bedroom, I will fall asleep. Some days, I will be exhausted early and will just darken the room, put my pillows where I like them and drift off. I set the A/C so that the room is cool enough that I need a cover. I usually wake up early, between five and six a.m. I have coffee, which I think helps with pain and alertness and read the paper. I check my computer and am ready to get going. This is now that the flare is abating. When I was in the worst of it, I simply lay around all day. There was nothing else I could do. I slept a lot during the day. When I'm not flaring I don't do that.

    Even though my thyroid was in the "normal range," my doc put me on a low dose years ago and it has made just the slightest difference. Most of what I do isn't a magic bullet but everything helps a bit. It's the total effect which helps.

    Finally, I just rely on faith. It's hard when I'm in a flare day after day after day. When I'm that bad, I just offer up thanks that I have a nice comfortable bed, books, TV and the ability to lie around. I can't feel stressed when I'm in a state of gratitude. Prayer, meditation and a sense of humor help a lot. With having to give up my part-time job because of the Sjogren's-induced flare, having to cash in my IRA at a reduced monthly benefit, and all the political talk of reducing benefits to those on SS and Medicare, it would be easy to worry about tomorrow. I have learned that I can't do that because it can produce runaway stress. I have had to learn to live in the present--not easy to do. It takes practice.

    Well, bet you never expected a long-winded response. It's just that what gets me through a bad day is a combination of things. I'm hoping something here is something you can use to get through this. I've been all the way from bedridden and on morphine to feeling well enough to work part time and back to being bedridden most of the time again. I keep in mind that it never lasts. It's the nature of what ails us. I hope and pray you will get better fast. Just let the ABX do its thing and get as much rest as you can. Drink plenty of water to help flush out the pathogens.

    Love, Mikie
  19. cherylsue

    cherylsue Member

    I'm crying as I read this, and I am printing this out. You are such a good person, and I'm so sorry this has happened to you, but I love your courage and that you keep picking yourself up and trying again. Your words are so wise and true.

    I know those Seals who found Bin Laden were brave, but so are you and many on this board.

    I am happy to hear that you went back to work part time. What kind of work did you do? How long did you work?
    I hope you will get the chance to go back again.

    Thank you so much for being you.

  20. Waynesrhythm

    Waynesrhythm Member

    Hi CherylSue and Mikie,

    Thought I'd pop in to say hi. Sorry to hear about your relapse CherylSue. I wish you the best in trying to get on top of this.

    Mikie, regarding your comment, "Drink plenty of water to help flush out the pathogens." I'm sort of bracing myself for some significant Lyme bacteria dieoff, and am researching supplementing with glutathione to help minimize some of the herx reactions. Some of my latest thoughts on this are here:


    CherylSue, I finally got an official diagnosis of Lyme Disease about 2 1/2 years ago, and am just now getting started on some focused strategies on how to best treat it. I'm trying to avoid using antibiotics until I see how far some other more natural stragegies can take me.

    I was wondering if you're familiar with Bryan Rosner, and some of the books he's written on Lyme and/or mycoplasma treatment. It's been quite an eye opener to read how Rife and other therapies end up working for some people who were only getting limited results from antibiotics. Just to mention, Bryan is NOT at all antibiotics; he's very pro- whatever works for us as individuals.

    Mikie, I like long-winded replies. :)

    Best to both of you... Wayne[This Message was Edited on 05/14/2011]

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