- This topic has 39 replies, 8 voices, and was last updated 7 years, 1 month ago by
.
-
Posts
-
Fyi…rifampin and azithro / doxy is not to be take easy…I did that protocol and got sinus tachycardia for 5 days so I would hold on rifampin for last. Besides his combo only works if you chlamydia induce ReA.
World, I took the rifampin and azithromycin combo for Lyme-induced RA and tickborne coinfections. The two antibiotics are fairly broad spectrum and work for microbes in addition to the chlamydias. The purpose of a combination Protocol is to (a) prevent resistance, (b) to target microbial pleomorphisms, and (c) try to cover a broad spectrum of microbes and any unknown variables.
Ok. Tell me so far what abx you try so far?
I would do one abx at a time. If something works then don’t stop.
Try a drug for gram positive?? Zyvox? That is next on my list.
Chronic ReA will cause more damage.
How long have you had ReA?
World, RA = rheumatoid arthritis. It would likely be little help to you to tell you what works for me and it can take time, working with an experienced doctor, to find a Protocol that works, as we have shared here before. I have listed the meds I’m currently taking in my signature line. My best suggestion to you is, as before, to find an experienced AP doc to partner, if you are choosing this treatment, because none of us are medical professionals here.
Those AP doctors are rip off. They charge arm and leg for consult besides I’ve seen few and none of them really have exp treating ReA.
Reactive Arthritis aka Retires Syndrome they used to call is VERY VERY different than Rheumatoid Arthritis so call. RA can and cannot be trigger by infection no one really knows but ReA is def cause by an infection.
RA does not lead to Spondalytitis or any other form of Arthritis such as AS where as ReA (Reactive Arthritis) can lead to Spine inflammation.
Spine inflammation is one of the worst kind of pains you can have, simply put it just sucks making your life living hell.
If I were you I would team up with a DOC WHO YOU CAN WORK WITH who will listen and work with you not against you but don’t except them to do any research you will need your own research and fact before asking for meds. At least this is the way me and my doc have relationship. I’ll do the hardcore research present it and ask if we can try this meds and see what he thinks.
ReA isn’t going away if it hasn’t gone away by 6 months. More than that you can consider your part of the 20% they talk about being chronic. More than that your in 3% of those who will eventually morph into another arthritis form somewhat if you ask me.
I am seriously considering TNF / Immune system meds to somehow slow this immune response at the same time taking Abx.
Also, if you don’t see any difference in Abx your taking say less than 30 days I would consider switching to another Abx. Now you can certainly avoid all this if you send your semen sample to Bedford / United medical labs.
Let me know how you end up doing.
Yes, ankylosing spondylitis is very painful. My mother in law has it as an overlap with psoriatic arthritis and I have seen her deteriorate very badly in the past 20 years on the drug regimen she was put on by her rheumatologist, Please be aware, though, that ALL rheumatic diseases, including ReA, can vary in degrees of severity and it is important on this forum not to diminish anyone’s degree of pain or level of suffering. We are here to support one another and the reason this site and discussion forum are a “free” service to you, and everyone who visits, is because of small individual donations given by grateful patients who have recovered on AP. No one gets paid at this foundation and it is run entirely by volunteers who have benefited from AP (or a loved one). We are rheumatic patients simply paying it forward to others who choose it.
The doctor lists are built by volunteers who receive feedback from rheumatic patients who have found a doc that has helped them and that they recommend. Volunteers spend many hours keeping the doc lists up to date to pass that info along to hopefully help others. AP is not a standard of care, which is why many doctors are private pay – they do not accept insurance because insurance does not recognize the types of care they offer. Many people actually prefer alternative medicine docs, which is why many are recommended to us. It might not be your cup of tea to see an alternative doc, Worldofme, and that’s fine, but when a doc offers a different type of care, this does not make them a rip off. Many of these docs will do extensive whole body work ups and initial consults can be an hour or two long. Specialists ( who accept insurance) can charge as much as, or more than, an integrative doc for a 10 min consult. It’s a question of choice and a person’s preferred standard of care. There are good and bad docs who are mainstream and Alt docs.
I don’t know which AP doc on the list you chose to see, but it would be helpful if you could let me know privately about Who you saw and why you thought they did not provide the care you expected. This way, I can add notes to help others make an informed decision when choosing a doc off the AP doc list in your state.
Hi,
Hi Phil. When I was using them I had difficulties with breathing and swallowing. Also there was swelling in my throat a bit and I went to ER. Doc told me to never use them again.
With sulfasalazine I have all over pain and flu after one week use.It might be worthwhile to see an allergy specialist. You could ask to be tested for allergies to doxycycline and sulfasalazine. Your response to sulfasalazine was probably not due to allergic reaction, and sometimes the allergic reaction to a drug is not caused by the drug itself, but by one of the pill’s “inactive” ingredients.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinNo reply from the doc “O”. I think I will follow the second suggestion. I may get prescribed clarityromisin . I will try this week from my urologist. And also ask if he will do the blood checking too.
I will postpone the combination therapy till I find a proper local doc or in am another close city who believes this therapy. Thanks everyone
Ps I added propolis and royal jelly to my list too. Sometimes using aspirin c with vitamin C. I firmly believe that krill oil is doing its job about inflammation.Hi Eagle,
I wonder if calling Dr. O.’s office might produce a response? Some docs will not answer emails unless you are an established patient and making an appt by phone might be necessary.
I hope you can get the help you need. Certainly sounds like you’ve run the gamut of testing…course, there are just so many infections that can cause this stuff. Any stool testing run? Klebsiella pneumoniae seems to be a gut infection that is implicated in ReA, too. Just a thought.
This illness sucks, my life is ruined for last 3 years. My ReA is always active. I cry to sleep two to three times a week.
Please my friend throw everything at it. Tnf and abx. This will morph to something if not control.
It might be worthwhile to see an allergy specialist. You could ask to be tested for allergies to doxycycline and sulfasalazine. Your response to sulfasalazine was probably not due to allergic reaction, and sometimes the allergic reaction to a drug is not caused by the drug itself, but by one of the pill’s “inactive” ingredients.
Hi Phil. It could be the reason. You are right. I will certainly do that plus food allergies. I will let you know.
I wonder if calling Dr. O.’s office might produce a response? Some docs will not answer emails unless you are an established patient and making an appt by phone might be necessary.I hope you can get the help you need. Certainly sounds like you’ve run the gamut of testing…course, there are just so many infections that can cause this stuff. Any stool testing run? Klebsiella pneumoniae seems to be a gut infection that is implicated in ReA, too. Just a thought.
Hi Maz yes lots of them including complete std panel with pcr , urine culture, sperm culture and even you mentioned stool testing. Nothing came out positive. even my infection markers crp and sed rate . They have been never reached out of normal levels. May be it is a hidden bacteria or a not known one. My urologist prescribed chlarityromicin today. After that I will see my rheumatologist to talk about the AP therapy issue and blood checking issues.
Even if I find the doc “O” it will be the same thing you offer for help because it is very far away. Can I take the mail of that semi-retired doc from Lynnie or from you to consult me? İf it is possible I mean. At least one of know what we are doing.Word, it was after an intercourse. I think each of us is different. Mine ilness has been mild till now as Iall the docs told me. I will try the macrolide antbiotics for a while . May be you could find relief by using tnf as you have a severe type of this ilness. Let me know about how you are doing too.
Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.My urologist prescribed chlarityromicin today. After that I will see my rheumatologist to talk about the AP therapy issue and blood checking issues.
That’s a start, Eagle. Hope it helps and kicks in soon for you. Yes, you’re right…many of these bugs are very tricky to culture and we don’t know the full extent of what is out there, as many bugs haven’t even yet been identified and named. Stealth pathogens that live intracellularly or shape-shift or thrive in biofilm colonies, are even harder to detect in a small sample. PCR, for example, is highly specific, because it’s looking for bug genetic material, but it lacks sensitivity, because if the bug isn’t in the small sample, it’s not going to show anything. For some tests, you need to be off antibiotics for a good month (like PCR) and for indirect tests, like antibody tests, if a person’s immune system isn’t functioning well, they just won’t produce enough antibody for a positive test anyway.
Even if I find the doc “O” it will be the same thing you offer for help because it is very far away. Can I take the mail of that semi-retired doc from Lynnie or from you to consult me? İf it is possible I mean. At least one of know what we are doing
Happy to send you the AP doc in Iowa’s contact info…look in your PM box, by placing your cursor where it says, “Hello, Eagle26,” and then select Messages/inbox.
.
I hate to be downer but this reactive arthritis is so hard to treat that most docs have no clue what to do with patient like us.
And yes I have been to world renowned Penn medicine and temple. I have been to urologist that call themself god of prostate but yet don’t know why ReA happens.
Some of the docs haven’t had a patient with ReA after urethritis.
I personally agree with maze that there is so many bugs you can’t treat.
Have you ever try Flagyl?
This drug covers anaerobic bacteria.
And yes and yes hallmark of hidden inflammation is NORMAL crp and sedrate.
Don’t ever let doc tell you that since you have noreal inflammation marker you don’t have any inflammation. I would avoid that guy for sure.
To test this theory, take short course of prednisone. If you feel improvement than you have inflammation.
I’m pretty much at this point approve for tnf, hard core narcotics, pain killers, abx you name it.
I’ve taken doxy, azithro, cipro, flagyl, levo, moxi, trimethoprim. NONE OF THOSE abx made a difference except Trimethoprim.
Apparently my pcr shows some c tuberculosis that no one has heard of.
It seems to be sensitive to zyvox which is rare and dangerous drug if taken more than 30 days.
This is why eagle I’m asking you find the money contact Bedford and have Ryan send you a kit. Yes, they send it international.
Do the pcr test before any abx.
This will tell you if you have a bacteria or not and will know which Abx to take from day one.
Keep inflammation under bay.
Do anyone here take Antibiotics and Tnf blocker at same time?
hi world I may do the tests. First I have to save money for it ( lots of. dollar gain value against our money). However sometimes the reason is unimportant when you find something that is working for you. Other friends may share this view too . I got sick of hospitals, tests, useless doctors knows far less than us. Hope we will find a cure of us and some relief . At least you have got opportunities like visiting penn and others. Also you have got AP doctors. Look at me I am struggling to find one AP doc in whole country. We are not competing in the same league. They have no idea about the test you mention here where I live 🙂 Keep me informed. Stay in touch.
No I have never tried flagly. Tried cipro and bactrim but no relief.Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.I ve just found these two articles about macrolide use in inflammatory diseases. May be it is of help to folks here.
Thanks everyone.
Macrolide Therapy in Chronic Inflammatory Diseases
Successful treatment of postvenereal reactive arthritis with synovectomy and 3 months’ azithromycin.Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.Have you try short course of prednisone? This could resolve your issue if none bacterial.
I would go back and ask for flagyl. They have it in your country used to treat bv and trich. Perhaps, this solves your issue?
Macrolids abx like azithro can cause heart problems.
One step bro, try flagyl and doxy.
You must be logged in to reply to this topic.