Madwolf, Jelly, Mikie: Re ABX treatment

Discussion in 'Fibromyalgia Main Forum' started by healing, Aug 27, 2003.

  1. healing

    healing New Member

    I posted this under a different thread but got no response so am trying you guys. Would appreciate some guidance.

    My DO spent our appt last week talking to me about the dangers of ABX therapy (2000 mg augmenten/day) that my rheumy has just started me on. "This is not a benign protocol," he said. One of the primary side effects is LGS. He is concerned about me developing severe food allergies, worsened pain, much worse candida (already have thrush, etc.). I am having light sweats (just an occasional sheen across the "mask" area of my face) which he attributes to disturbances in my anotomic (sp?) nervous system (hope I said that right!) from the ABX. He is concerned that I have already started to develop gluten and lactose intolerances -- which I've never had before.

    He doesn't deny that ABX can help some people, but he is not convinced that in my case the benefits outweigh the dangers.

    I asked him if he had any other suggestions for possible cures beyond his ability to help alleviate symptoms. He said he'd probably refer me to a Chinese herbalist for treatment.

    Now what? Any input would be useful.
  2. Shirl

    Shirl New Member

    This board is like the Indy 500 this evening! Your post was on the second page, I can't help but this is a 'bump' to get you back on 'page one' again!

    Mike, and probably the others that can advise you are usually here in the morning, I am the NightHawk moderator.

    If this post goes down the board without a reply, bump it yourself, alright?

    Shalom, Shirl
  3. annepat

    annepat New Member

    Have your DO and Rhemy spoken with one another?
  4. Mikie

    Mikie Moderator

    Please go to The Road Back Foundation website and read. The protocol is there, incuding which ABX are preferred. Drugs in the penicillin family are not effective against mycoplasma infections and do not help. Further, they can be dangerous taken long term.

    Doxycycline, Azithromycin, Cipro, and Minocin are the drugs of choice. Because these do not outright kill the bacteria and because they alter the cells' walls to keep the mycoplasmas from being able to enter the cells, they doe not cause the bacteria to mutate producing resistant strains. Long-term use of these ABX is safe.

    Before my doc prescribed the ABX treatment, I provided him with printouts of the protocol for using ABX long term for the mycoplasma infection. I suggest that this be done for anyone whose doc is not familiar with ABX treatment for our illnesses.

    I take probiotics every day and have not had a problem with LGS since being on the ABX for two years. In face, the ABX caused my IBS to go away.

    Love, Mikie
  5. healing

    healing New Member

    Thanks for bumping me, Shirl! And thanks for input so far from the rest of you all....

    Yes, my DO and rheumy talk, although my DO does not refer patients to my rheumy anymore (he explained why very frankly to me).

    I'm taking the Augmenten for a supposed strep infection causing my reactive arthritis. I have been on the cyclines (2 diff ones) twice in the past, with no herxes, nothing except a general feeling of unwellness, after 4 months on each. I'm supposed to add Zithromax to the penicillin in the next month or so, unless I test positive for salmonella, in which case she will start me on Cipro. I already inject Enbrel, which I do not believe is helping my underlying inflammation although I do believe it is alleviating the flares I have been having. Enbrel is no "benign protocol" either!

    I do take probiotics daily (finally found a brand I could take). My stomach pretty much feels good on this treatment, although I have occasional acid reflux (I take Nexium daily).

    My DO understands the concepts on the RBF website. He says his experience is that some people are helped, but most not. Again, he believes that my condition is reactive and precarious enough that ABX are not a good solution for me.

    He is a very creative doctor, willing to look at anything that works. He has used acupuncture, homeopathics and herbs to treat me for the past 10 years and I believe this has kept me functioning. I feel certain he knows a highly qualified Chinese herbalist to refer me to. He said he'd put me on Diflucan for 10 days to get rid of the candida, then detoxify my gut and reestablish its balance before sending me off to the herbalist.

    I feel a little torn between my 2 docs and am in a bit of quandry about what to do. I guess I trust my DO somewhat more than my rheumy, but it's my rheumy who's being more aggressive in going after a "cure."

    These things are so hard to sort out when you're working, fatigued and suffering from fibrofog! THANKS for any additional input, thoughts, guidance y'all can provide!
    [This Message was Edited on 08/28/2003]
  6. healing

    healing New Member

  7. healing

    healing New Member

  8. Stillkicking

    Stillkicking New Member

    I'm sure both your doctors are well meaning and which one you follow is of great concern to you. I advice you to stay on the antibiotics because it offers the best hope for full recovery.

    I think you are lucky to find a rheumy who understands you have reactive arthritis and the only way to treat this infection is antibiotics. Most of the time reactive arthritis is not recognized and patients symptoms are treated instead of the infection. They never recover.

    I have a suggestion to help the augmenten work better and keep you from becoming resistant to it. Take green tea supplements with as much catechins as possible in it. A researcher discovered that tannins (such as in green tea) taken with a beta lactam antibiotic may make the antibiotic up to 10 times more effective. This is the substance that makes green tea so good for you.

    Hope you are feeling better soon.
  9. healing

    healing New Member

    Stillkicking - Actually, I'm feeling worse now, but I think that's good. An interesting side effect has been that my Neurontin seems to no longer work well. I'm having tremendous difficulty falling asleep, which I haven't had since starting Neurontin years ago.

    I'll talk with my rheumy and DO about green tea extract. I do appreciate the suggestion.
  10. Mikie

    Mikie Moderator

    The Doxycycline and Klonopin are both still working well for me. I've been on them both about two years now. I hope you can get something to help you sleep.

    Love, Mikie
  11. healing

    healing New Member

    I'll get my newest labs back next week and then know if I'm adding Zithromax or Cipro to my Augmenten. Still having gastrointestinal response, wakefulness, lots of pain that is moving around -- assume I'm herxing but can't say for sure.
  12. Mikie

    Mikie Moderator

    Be careful with Cipro; it is a fluoro-quinolin and has fluoride in it. I had a pretty serious reaction to it. I woke all night with very labored breathing and should have gone to the ER, but the Klonopin had me so sleepy that I couldn't wake up enough to get myself there or even call an ambulence. I did take the initial dose during the day, but it didn't get to me til later at night. My doc wasn't even aware it had fluoride in it and called it a quinolin medication. I'll bet no docs ask their patients if they are allergic to fluoride before prescribing it and others in the same family.

    Love, Mikie
  13. beckster

    beckster New Member

    Also, what is the definition of reactive arthritis? I've read that here before but don't know exactly what it is.
  14. Mikie

    Mikie Moderator

    LGS stands for Leaky Gut Syndrome. It can happen when antibiotics kill the good bacteria in the gut along with the bad. We need to take probiotics to recolonize the good bacteria. Everyone over the age of 35 should be taking the probiotics as prevention against LGS because at that age, our bodies slow way down on producing good bacteria. The Jarro-Dophilus sold here is the best probiotic I have found. Digestive enzymes also help keep our guts healthy.

    Love, Mikie
  15. healing

    healing New Member

    Beckster - reactive arthritis is when your body has a "bug" (a virus or infection) take up residence at the cellular level and your body doesn't really recognize what it is but attacks itself (autoimmune), causing arthritis-type symptoms. The most common "bugs" include chlamydia pneumonia, which I have already been treated for successfully. I am currently being treated with the penicillin for a suspected strep infection.

    My symptoms, which I have in addition to "regular" (hah!) FM symptoms, include mostly non-degenerative swelling in the joints, particularly in the hands, feet, hips and spine. This is really a sort of chronic tendonitis and inflammation of the soft tissues as well as of the tissue on the outsides of the bones. There is a lot of deep pain and, as with FM, fatigue etc. I tend to have increased FM symptoms when my arthritis is flared. I would say my arthritis is my primary problem, with the FM a collateral situation. Just a lot of symptoms get compounded because the two work off each other.

    Probably more info than you wanted!
  16. Mikie

    Mikie Moderator

    I was diagnosed with osteoarthritis. Dr. St. Amand says that when the phosphate debris have run out of soft tissue to invade, it takes up residency in the joints and forms OA. Mine has dramatically improved since taking the Guai. Even though Dr. St. A says the OA is permanent. I wrote his nurse and co-author, Claudia, and she had the same experience.

    This sounds awfully similar to what you are describing except for the pathogens causing the joint problems instead of the debris. ABX therapy is being used to treat RA with very good results.

    Love, Mikie
  17. healing

    healing New Member

    Know you probably won't get this 'til you return but I wanted to respond to your post. I have never taken guai -- it sounds like a difficult protocol -- but have been reading all your posts on your response to it.

    The primary difference between osteo and reactive arthritis is that osteo is caused by wear and tear and you actually have joint damage. I have some of this in my fingers -- just part of the aging process for me. My reactive arthritis is caused by infection and causes the swelling and these incredible shooting pains, plus as I mentioned above, the deep bone-level pain. The swelling can itself cause some damage if it is persistent.

    You have me wondering now if guai would be worth a try.