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I think some of you may find this article of interest.
Yes, that freaked me out. Maybe someone with a more science-minded brain than mine can weigh in, cuz I did not like what I read (if I understood it correctly). Didn’t Dr. T. say there was no problem with taking the biologics (which I think are in this TNF antagonist group) with mino? Apologies if I’m remembering it incorrectly… ❓
Kate. reactions to TNF blockers are rare, but a very real threat to ones health. I know two individuals who took them. one friend took Humira, Remicade, and Enbrel over a 10 year period. he has since stopped taking them and is in a 6 year drug free remission. how long that lasts we won’t ever know. another man I know took enbrel for 2 years and is in a drug free remission now standing at 9 or 10 years. both never suffered any side effects. but some people do. everyone is different. My favorite golfer Phil Mickleson is also taking Enbrel for his psoriatic arthritis. but he hasnt been on it very long. he is still playing professionally in the pga and came in second in the fed ex classic last week. I have Enbrel on standby should my condition take a turn for the worst. sadly it is one of the only real options out there to prevent joint damage. the best drugs out there are clearly antibiotics. the second best would be TNF blockers. thats life for yah
@KateLove wrote:
Yes, that freaked me out. Maybe someone with a more science-minded brain than mine can weigh in, cuz I did not like what I read (if I understood it correctly). Didn’t Dr. T. say there was no problem with taking the biologics (which I think are in this TNF antagonist group) with mino? Apologies if I’m remembering it incorrectly… ❓
Hi Katelove,
Yes, there is no problem taking minocycline with a biologic or other rheumatologic drug (provided there are no other health-related issues that may prevent the use of minocycline e.g. tetra allergy, liver probs, etc).
There is a heightened, quite serious risk of life-threatening infections while on the biologics. If one adheres to infectious theory, then it makes no sense to block aspects of immune function, which can enable the underlying infections to grab hold.
While Dr. T. did run the MIRA trials and has been very supportive of RBF in the past, it’s never been entirely clear what his philosophies are with regard to Brown’s infectious theory. In his article, he states that “an infectious cause has never been proven.” Of course, he is right…it is still a theory and one must decide for one’s self if it makes sense or not.
The question that rang in my head over the death of this gentleman from using a TNF-blocker, is what might have been at the root of his lung fibrosis that enabled a immune system that no longer was running on full surveillance capacity to cause it? All I know is that we have heard numerous patient reports on this forum of reversals in lung fibrosis when AP is used. Is it the immune-modulating effects of the abx or is it because it is treating an underlying infection that is holed up in the lungs? Perhaps Parisa can jump in here, because I think her hubby suffered from lung fibrosis and he found azithromycin to work in his case. This abx does not have the same immune-modulating effects as minocycline and is very broad spectrum. 😉
My guess is that they won’t be running any autopsy pathogology on this unfortunate gentleman’s lungs to look for any microbial offenders.
Thanks for the info, guys…
I’m not taking any of the drugs mentioned, but agree with Cheryl that it’s “alarming”.
I often wish for more benign therapies for some of these conditions. Oh, magic herbs, where art thou?
(That’s not a post hijack. And I know even natural stuff can be dangerous, so I hope nobody clobbers me for the herb comment. Hehe, I think I have poster paranoia from what I’ve seen happen on other boards.) 😛
Hi: All, I Just want to say, seven years ago I felt I was going to die very soon when I was taking the biologics, first with Humira and then Enbrel, along with Ped. and Metho. , I stopped taking them all and started Minocycline two days later. Two to three weeks later I knew the minocycline was working for me and six weeks later I was sure it was working, I just started feeling better, with no Herx and still today ,no herx. There is one thing I liked about the Humira and the Enbrel they shipped right to my door and no COPAY ,How could they give such a deal? Joe
@Joe RA wrote:
There is one thing I liked about the Humira and the Enbrel they shipped right to my door and no COPAY ,How could they give such a deal? Joe
Thats the only thing you liked? 😆
Perhaps no copay because they’re already making plenty off the drugs and share a portion of that with insurance companies….?
I don’t know why doctors can’t wrap their heads around the idea that autoimmune conditions are caused by something and that something is usually an occult infection. They might give a nod to it being a “trigger” but then believe the trigger has mysteriously disappeared leaving behind all of these symptoms that are just the immune system run amock and not the immune system attacking the “trigger” ie. continuing infection. So then what do the doctors do? They lower the immune system so there won’t be any more annoying symptoms and then scratch their heads when someone gets worse.
My husband’s interstitial lung disease/pulmonary fibrosis was caused by his Lyme/Babesia. Treatment of that condition not only stopped the progression of the disease but reversed it. Alot of the treatment we had to pay for out of pocket because we were going against the mainstream protocol. Cytoxan and prednisone, a simple copay.
Hello all. I took Remicade for 10 months, then Enbrel. During the time on Enbrel I had pleural effusions (both lungs). Rapid onset. While on Remicade I was dx’d with MRSA and then about a month later my green tongue went to the black hairy stage. Thank goodness my lung doctor had the sense to tell me no more biologics. They did really take the swelling out. I have seen 6 rheumatologists as of now. The last one who’s Rifampin/zith/mino protocol I am on, told me that he drew synovial tissue from knee and tested Ct levels pre and post Enbrel. Results- 10 times the level of Ct in the tissue post Enbrel. Psoraisis began after 5 months on Remicade. And my personal experience with others taking the infusions with me was that many were having opportunist infections and drastic side effects, some were not.Mostly the women seemed to be faring better. I never took the drip quietly. I asked questions of others around me. You just get so sick and stiff and desperate that you sign the releases and take the drugs…. These days I am not as flexible as I was while on biologics, but I am very hopeful that my long term health prospects are better. All the best, jim
@jims wrote:
I have seen 6 rheumatologists as of now. The last one who’s Rifampin/zith/mino protocol I am on, told me that he drew synovial tissue from knee and tested Ct levels pre and post Enbrel. Results- 10 times the level of Ct in the tissue post Enbrel.
Jims, it’s so nice to see you post and thanks so much for this really GREAT info! Am presuming by CT, you are meaning, “chlamydia trachomatis?” This is extremely important, I reckon, for this sort of information to be available to rheumatics and I hope this doc will be publishing his results. Do you know if he already has?
Please stay in touch with us here when you can…abx therapy isn’t a quick fix, for sure, but I am putting it out there for you that you can turn this beast around, even if it means short term discomfort until things are under control. Hang in there, Jims! I am so impressed that you’ve gone to such lengths to get the treatment you think is right for you. I hope you also get those Lyme tests run (nag nag) 😆 .
Hello Maz, thanks for the response. I read your posts and others every day, but seldom post myself. Yes I mean chlamydia trachomatis. I am speaking of Dr C in Florida, and the way he spoke I doubt that very important morsel about Ct levels will appear in any of his studies. I can tell you this doctor has a very questioning mind and doesn’t accept mainstream protocols at face value. He spoke to me for quite awhile and lost me in some of the cellullar reasoning behind his protocol. Do you think I could get the Igenix tests while on Rifampin/Zith/Mino? I am on day 20 of a 6-9 month protocol. He will monitor me through blood work. jim
@jims wrote:
Do you think I could get the Igenix tests while on Rifampin/Zith/Mino? I am on day 20 of a 6-9 month protocol. He will monitor me through blood work.
Hi Jim,
Thanks for the extra info on Dr. C…very interesting! 🙂 Will Dr. C continue treatment past his 6 to 9 month window, do you think, if needed?
That’s a good question about the IGeneX labs while on abx…I was actually on tetracycline, biaxin and plaquenil when I had my labs run and didn’t think to ask when I was a newbie. My best suggestion is to contact Dr. Harris at IGeneX labs and ask him in relation to the combo you’re on.
Mind you, you’re on a pretty broad spectrum protocol now which would also be hitting Lyme and some coinfections, if you had them…so, thinking about it, you might find it better to wait until Dr. C’s 6 to 9 month protocol has run its course to see how you’re doing at the end of this treatment cycle. You might find there is no need to look further in the very best case scenario. Again, though, if you want to be sure…Dr. H at IGeneX might be able to elucidate further. 😉
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