Doxycycline herxing how long does it last??

Discussion in 'Fibromyalgia Main Forum' started by Hootie1, Sep 30, 2006.

  1. Hootie1

    Hootie1 New Member

    I started taking Doxy about a month ago- the first week I increased the dosage slowly. I am now at full strength - 200 mg with breakfast and 200 mg with dinner.

    I am sick all of the time. I understand that I am probably sick because the medicine is working, but how long will I be sick like this? Any ideas? For maybe an hour or two between the doses I feel fine. I am also taking probiotics - 2-3 per day.

    I have mycoplasma and c. pneumonia. I am also taking supplements as well as 3000 mg of valtrex for EBV and HHV6. I am also taking artisinin that is supposedly helping for the fungal.

    Thanks in advance.
  2. Mikie

    Mikie Moderator

    We are all different, so we react differently to our treatments. You are on an extremely aggressive regimen, treating bacterial, viral, and fungal infections at the same time. In addition, the dose of Doxy you are taking is twice what is traditionally prescribed, except for Lyme. I am not trying to second guess what your doc is doing as I am not a medical professional. I speak only from my own experience in dealing with chronic infections and the research I have done.

    My experience, when I was taking only the Doxy was to feel fluish for a few days and then Herx hard and fast for 24-48 hrs. I would then feel tired but reasonably well until the next immune response and Herx. It was about a year later when the Famvir was added. I basically had about the same response with the AV. I do not have fungal infections, which may be due to taking probiotics and using my zapper.

    It was when I added transfer factors and Heparin injections that I had such a strong immune reaction that I felt horrible all the time. I only took the Heparin for 2 1/2 months as that seemed to be all that was necessary. I took the TF's for three months and continue to pulse them for a couple of days every 6 weeks. I was so sensitive to the TF's in the beginning that I could only sprinkle some capsule contents under my tongue for the first three months.

    We can elicit very strong immune reactions from some of these treatments. There is a small risk of bringing on a toxic-shock-like condition if too many pathogens are killed off at once. Sometimes, we just have to cut back on the doses in the beginning and work up. If it were me, I'd talk to the doc about how you are doing.

    It can take years to clear up these infections if we have had them a long time and it seems to me that some docs are overly aggressive because they want to get us well as fast as possible. Their hearts are in the right place, but it is we who have to suffer the side effects of these treatments. Going a little slower can make the treatments more tolerable. Again, though, this is definitely something for you and your doc to decide. Good luck.

    Love, Mikie
  3. Hootie1

    Hootie1 New Member

    Thank you. I was hoping you would read this. I am also taking transfactor. I cut back on the valtrex- I was taking 4500 mg. I thought that maybe this would go away in a reasonable amount of time, but realizing that this is an unusually long time to herx after reading your post.

    I will talk with my doctor tomorrow. I think that he might be doing this because my c. pneumoniae is up to 1:1024. I have a very high candida problem as well.

    Thank you for responding.

    Mikie- I don't understand why the bacterial infections don't come down and stay down. Is it that the immune system is not strong enough? I was frustrated - as I'm sure you are (I hope you don't mind my saying this)to hear that after being on antiobiotics for so long, you still have to take them. I don't understand!!
    [This Message was Edited on 10/01/2006]
  4. Mikie

    Mikie Moderator

    It is the nature of the bacteria themselves which makes treatment such a loooooong process. These kinds of bacteria invade their host cells and replicate. They then kill the host cell and enter the bloodstream in search of new cells to infect. It is only when they are in the bloodstream that they are vulnerable to being starved to death. Most of the ABX do not actually kill the bacteria. They change the outer coating of our cells so that the pathogens cannot enter them. It's kind of like putting new locks on your doors. When the bacteria cannot enter new host cells, they die.

    If one has been sick for a number of years, this whole process of invading cells goes on and on because there are millions of the bacteria entering the bloodstream at various times. Only a portion of the bacteria are in the bloodstream at one time.

    Many of the most virulent bacteria, like mycoplasmas and Lyme, will change form and become cysts deep inside the body's tissue. These will remain dormant but can reactivate. I consider my mycoplasma infection under control but when I get run down or sick, if I get a fever, I will do a cycle or two of the Doxycycline just to kill off any stragglers. Dr. Nicolson, himself, told me about this in an e-mail to him.

    I hope this helps explain why getting rid of these chronic bacterial infections can take so long. After about six months on the ABX, the protocol may call for pulsing them. This seems to confuse the bacteria and keep the treatment working better. Nicolson's protocol calls for six weeks on the ABX and two weeks off. If one cannot stay off the ABX for two weeks without the symptoms' returning, one goes right back on them until one can. Then, one starts seeing how long one can stay off them without the symptoms' returning. It gets longer and longer as the bacterial load is lessened. Still, it's a long process.

    I look at it this way: It's better to go through all this than to turn my body over to the terrorist pathogens to use it to grow and thrive while I feel barely alive. I am convinced that the fibrin overgrowth is controlled by the pathogens to improve their low-oxygen environment. This environment is part of what made me so tired.

    Good luck to you.

    Love, Mikie
  5. Hootie1

    Hootie1 New Member

    Thank you very much for such a good explanation.

    At what point do you believe that you will be rid of the mycoplasma?
  6. victoria

    victoria New Member

    is that what you are also taking?

    If so, it is also used for suspected BABESIA, also a stealth pathogen that is a parasite, and can be gotten from tick bites. You could be feeling ill from herxing from die-off of toxins etc from other bacteria that you don't know you have, as the tests are not very reliable.

    If you've already read this, Hootie, I just came back and corrected it, was thinking of bartonella and that was incorrect! Sorry!

    At some point, most doctors will RX flagyl for cyst forms of lyme, I'm assuming they do for mycoplasma etc too. You might want to ask your doctor about the treatment plan overall as well.

    Hope this helps; these 'stealth pathogens' are really difficult to deal with.

    All the best,
    Victoria


    Ps, most of the doctors treating lyme feel that once it has been in you for a while, one probably never actually gets rid of it and that it has to be kept in remission. Therefore most recommend going on abx pulses yearly or so, as needed, to keep it in remission.

    [This Message was Edited on 10/03/2006]
  7. mollystwin

    mollystwin New Member

    Are mycoplasma the same as mycoplasma pnuemonia?

    Mikie,
    What is a zapper?

    Thanks!
  8. victoria

    victoria New Member

    Many abx overlap in what they treat. To give you an idea, here is a partial list I found at lymeinfo.net:

    MYCOPLASMA
    Explanation: A genus of small bacteria which lack cell walls. M. fermentans, M. pneumoniae, M. penetrans, M. hominis and M. genetalium

    Symptoms: Fatigue, headaches, muscle pain and soreness, nausea, gastrointestinal problems, joint pain and soreness, lymph node pain, cognitive problems, depression, breathing problems and other signs and symptoms

    Treatment: Slow-growing mycoplasmal infections are not rapidly susceptible to antibiotics. Doxycycline, Minocycline, Ciprofloxacin, Azithromycin, and Clarithromycin may be used.

    BABESIOSIS/BABESIS:
    Explanation: Protozoa that invade, infect, and kill the red blood cells

    Symptoms: Fatigue, night sweats, fever, chills, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness, dark urine or blood in urine

    Treatment: Atovaquone (Mepron) plus Azithromycin (Zithromax), Clindamycin and oral Quinine

    Other: Alternative treatment may include Riamet or Artemisinin

  9. victoria

    victoria New Member

    If you google 'shasta cfids' you will find a website that addresses all kinds of things and helpful hints about treating mycoplasma (should be at top when googled, the subheading should be 'mycoplasma overview') --

    from things like eating a dry cracker before taking the doxy to help stomach upset, etc. It also gives how many cycles of the doxy a study found it took to reduce symptoms, etc., etc...

    hope this helps...
    Victoria

  10. Mikie

    Mikie Moderator

    There are several strains of mycoplasmas which seem to be more prevalent in us. M. pneumonia is one of them. We are also prone to m. fermetans and m. incognito.

    Zappers are little battery operated gizmos which emit a low-frequency, low-voltage current in a specific wave pattern. You attach wrist or ankle bands so the current can kill pathogens in the bloodstream. In it's simplest form, you can use a "one size fits all" frequency which is supposed to kill all types of pathogens. There are little cards you can buy with discrete frequencies tailored to specific pathogens. You can adjust the voltage. At the low end, I feel nothing but a sense of calm when I run it. If I dial up the voltage, I get a little rash under the ankle bands.

    I bought my unit at the Hulda Clark website for $150. It is the best $150 I have ever spent. My zapper absolutely does work. If I use it in the manual mode for several days, I can experience a Herxheimer Effect just as though I have taken ABX or AV's. In the auto mode, it turns itself on and off for what is considered the ideal session. I use it in the manual mode when an infection reactivates.

    There are more expensive machines which allow you to dial a whole bunch of discrete frequencies. They also allow you to diagnose infections by the response the machine gets to these various frequencies. The Rife Machine is probably the most well know of these. There are also electro-magnetic machines which use magnetic pulses which are supposed to kill pathogens deep in the body's tissue. I am not convinced they are as safe to use as zappers and have decided not to try one. Hope this helps. You can look up zapper online and get more info on them.

    Hootie, as Victoria has mentioned, once there are mycoplasma cysts deep in the body, it may not be possible to completely erradicate them. In that state, they are dormant and do not cause one to feel ill. It's a lot like the Herpes viruses which go latent. They will produce a pos. antibody test but unless they reactivate and the viral load is high, they do not make one sick.

    Dr. Nicolson has written that no one knows for sure whether everyone can get the mycoplasmas under control without taking the ABX for life. I suspect that is because this treatment is relatively new and hasn't been used long enough for those with the worst infections. Most of even the worst infection do clear up after several years of first taking the ABX consistently and then pulsing. It took 2 1/2 years for me to get it under control after I had been sick for about 11 years. That's a long time to be chronically infected with such a virulent bacteria. Some docs will use several ABX at once and/or switch them from time to time. I just use the Doxy as it seems to work well for me. I am allergic to Cipro.

    In my case, I don't take any chances. As soon as I'm running a low-grade temperature for a couple of days, I do a cycle of the Doxy. This is especially true if I'm sick with something else or run down. I am planning to take the Doxy from now on before getting any dental work done, including cleanings.

    ProHealth sells a transfer factor for mycoplasmas on its website for physicians. I've had such good luck with the TF's for other chronic infections that I may consider them. Thing is that they are expensive and my Doxy is cheap and is working well for me without side effects. I take probiotics faithfully all the time. Normally, I am only using the Doxy several times a year. This year, I have had to pulse it more often because of this gastritis I've been having.

    Love, Mikie
  11. Hootie1

    Hootie1 New Member

    Thank you so much for such wonderful insight! I want to have discussions, but truthfully I am exhausted. I will try to come back at another time.


    [This Message was Edited on 10/03/2006]
  12. mollystwin

    mollystwin New Member

    Thanks for the info! I have mycoplasma pnuemonia that I am treating with cipro. Also have the chlymidia pnuemonia. I have a candida issue that I had just gotten under control and was not going to do the cipro, but then I got pretty sick with pnuemonia symtoms, so now I am taking it. I can tell my candida is creeping back after only 7 weeks of cipro. I am being very careful, rotating antifungals and take transfer factor for candida and probiotics. Even with all that the candida is slowly returning. My dr did a candida blood test. I'll see the results on Monday.

    I am concerned that I would not be able to tolerate a year on antibiotics. So far the plan is for four months, and then we'll see where my levels are. My dr did say my numbers were not as high as some she had seen, so maybe I will not have to take the antibiotics for long.

    It's so hard to decide what to do, as the treatment for one causes problems for the other!

    I am going to look into a zapper. I think I'll put this on my Christmas list. [This Message was Edited on 10/03/2006]
  13. Mikie

    Mikie Moderator

    I think the zappers are a really good way to kill off the pathogens without the side effects of meds. The TF's have few side effects except that they elicit a very strong immune reaction. Between TF's for mycoplasmas and a zapper, perhaps you could get the m. pneumonia under control without the candida's rearing its ugly head. Your doc and you could discuss this.

    Most traditional docs are not familiar with the zappers. If they have taken courses in physics, they would know that everything has it's destructive frequency. The beauty of the zappers is that the frequency which kills pathogens does not harm human tissue.

    I've used a whole gamut of traditional, nontraditional, and cutting-edge treatments just to get to where I am now. Overall, I've improved dramatically in the last five years but progress is agonizingly slow and I still have to deal with the usual things which plague people my age.

    Good luck to you.

    Love, Mikie
  14. cct

    cct Member

    Thanks for the discussion and all of the really good information!
  15. Mikie

    Mikie Moderator

    Interest in these topics and discussion on them again. I really do not believe we can heal unless we deal with the chronic stealth infections which are present in at least 70 percent of us (it's probably more).

    I see so many people posting about the symptoms of chronic infections but I'm not sure they are aware of how prevalent infections are with us. No one knows for sure whether infections cause our illnesses; we know they can trigger our illnesses. They may just be infections of opportunity in people with disfunctional immune systems.

    If there is overgrowth of fibrin in the blood from chronic infections, I believe we must also deal with the ensuing hypercoagulation. Pathogens thrive in the low-oxygen environment caused by the excess fibrin. They also hide out in the clumps of fibrin and platelets which get caught up in the fibrin overgrowth. Paradoxically, people with this type of hypercoagulation can hemorrhage because the platelets cannot break free of the fibrin to allow blod in incisions or wounds to clot. Before I took the Heparin injections, I hemorrhaged following facial surgery.

    At one time, my SED rate was only a 1, an indication that hypercoagulation is present. It is now a healthier 6. A 0 SED rate is considered normal on blood tests; no one ever worries about a low SED rate but in our case, they should. Anyone interested in this type of hypercoagulation can read more about it, and the blood tests which will confirm it, at the HEMEX Lab website.

    Love, Mikie
  16. lisagra

    lisagra New Member

    hi Mikie:

    thanks for the great, easy to understand explanations.

    i too am positive for borrelia, babesia, bartonella, erlichia, mpneumonia, cpneumonia, strep pn and have hi viral titres for all the most common viruses.

    i just started heparin 2 weeks ago....twice a day 7.5mg subq.

    next my doc has me adding amantadine.

    they then want to add an anti-bacterial.

    i have a terrible time with herxing...the toxic shock description is perfect...that is exactly how i feel.

    when i'm not on killing meds, i feel exhausted and in pain. i am virtually bedbound 90% of the time.

    anyway...my question, how much heparin did you do, how did you know ou didn't need it anymore after the 2 months.

    did you ever do the doxy, anti-viral and heparin all together?

    how did you detox?

    i know you still struggle with this...but it sounds as though you are fairly hi functioning....good news!!!!

    i hope i can get to that point someday too. i'm just so sick of being stuck in bed everyday.

    thanks for your advice and insight.

    regards, lisa
  17. Mikie

    Mikie Moderator

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

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

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

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

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

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

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

    When I started the Heparin injections, I again had a strong immune reaction, the strongest I have ever experienced. I was taking 5,000 IU's twice a day. The protocol called for six months of injections. After about 2 1/2 months, I started bleeding at the injection sites and my doc and I decided to call it quits.

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

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

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

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

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

    Love, Mikie

  18. Hootie1

    Hootie1 New Member

    My sed rate is only a 1 and my doctor has not commented on this at all.
  19. Mikie

    Mikie Moderator

    Most docs have never been told that a low sed rate can signify problems. They are programmed only to become alarmed when sed rates are high, possibly indicating inflammation.

    A low sed rate isn't definitive but it could be an indication of hypercoagulation. Hemex Labs has a lot of info on their website about the ISAC panel they run and these tests are highly definitive.

    My doc and I decided to just do the Heparin injections empirically because it's a low dose and the risk is not high. Also, I had been sick for years and years with the chronic infections, so it was a good bet that I had hypercoagulation. The strong immune response and Herxing confirmed for us that it was a good choice.

    Love, Mikie
  20. ANNXYZ

    ANNXYZ New Member

    I am on Doxy for lyme/ mycoplasma and I take a detox product called Fiberfusion by Enzymatic therapy that absorbs toxins in the bowel. I take three capsules once a day with a glass of water . It really makes a difference and I regrett skipping a day .

    A lot of these protocols call for pulsing the ABX , every other day so the immune system is not over burdened with die off from toxins. I am a firm believer in that approach and would never function if I did not take this path . The toxins make you VERY weak .