Mino or doxy?

[Linda L]

I had four injections only.
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[worldofme]

What can I do to stop my hip pain? I taken everything and still taking doxy…
The hip pain is so bad that im having hard time walking.

Flagyl was only drug that kept hip pain away but this drug doesn’t work anymore…

What are my options …doctors do not volunteer in suggesting abx unless u bring it up.

I notice most docs don’t like to offer suggestion or input unless u bring it up.

[Linda L]

Worldofme,
What supplements do you take?
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[worldofme]

L-Lysine daily 1000mg & Vitamin D 50,000 weekly ( due to Vitamin D level in 19’s). Also take Acetyl L Carnitine 500mg with ALpha Lipoic Acid.

I do not take vitamin c or anything else at high dose as this tends to cause worse in symptoms.

Any suggestion for flagyl type medicine other than tindamax?

[Calida]

Worldofme, this weekend I had a look at all of your posts to try to get a better picture of your journey. I didn’t want to ask questions you’ve already answered.

I wrote a review/outline of the major points made to streamline the information:

1- You work well with your Infectious Disease doctor
2- He suggested a 6 month trial of TMP and doxy or mino
3- You found Flagyl and BactrimDS (or TMP) to be effective treatments
4- Flagyl is effective against anaerobic bacteria and parasites/protozoa (http://aac.asm.org/content/43/7/1533.full), BactrimDS against prostatitis.
5- You have found that Flagyl is no longer effective
6- Maz mentioned the reasons why you may want to rule out trich and klebsiella
7- Klebsiella has been implicated in ReA and AkSp and Flagyl is effective against Klebsiella and trich.
8- Your ID doc is aware of that fact and also said biofilm may be an issue.
9- You are awaiting lab results from Bedford Research Lab
10-Your hip pain has become debilitating

I’m not a doctor so I have no idea how to treat your condition so I put myself in your position and here’s what I would do to move forward in an effective, timely manner:

1- Speak with my ID doc and ask if he would be willing to consult with the doctor in Florida Maz mentioned. The Florida doc has the experience in dealing with male infectious/autoimmune issues and different combinations of antibiotics to treat difficult cases.

2- Cases involving drug resistance often respond well to combination rather than mono abx treatments so I would try to find a doctor who specializes in that approach. The Florida doc sounds like a winner as does an experienced LLMD. They may know of an abx or med that would make the bacteria susceptible to Flagyl once again or know a good, effective substitute for Flagyl

3- If working with the Florida doc isn’t feasible, I would begin the treatment outlined by the ID doc, 6 months of TMP and mino or doxy

4- I would forget about the unlikely drug side effects such as DILE or MS since the chances are slim you’ll develop those and you have a much more important known to conquer.

5- I would just simply follow Maz’s advice. I would do everything in my power to see the Florida doc or have my doctor consult with him.

I don’t believe there is anyone in this forum certified to treat your condition. What many here do know is how to find the right doc and stick with one good treatment plan for the long run.

I had severe, debilitating pain with trouble using both arms and legs so I’ll mention LDN again. It’s not addictive, has no known side effects, it’s used with children with autoimmune diseases safely and is found to be effective in many different AI Diseases as well as cancer. And, best of all, it’s cheap, $49 for a 3 month supply.

As I mentioned in an earlier reply, it seems your case is too complex for you to find the right meds to reach remission. You need expert help. The more you experiment with different antibiotics, the more likely your bug(s) will develop resistance. If the Bedford lab results are negative, an experienced doc will know how to use antibiotics to cover all the bases. If you choose to follow your ID docs advice, I would use the TMP – minocycline combo due to mino’s penetration ability and the decreased chance the bacteria will develop resistance.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[worldofme]

Thank you for going through my thread and understanding my situation. This really means a lot. Would you happen to know how I would be able to contact the doctor in Florida Maz?

As of right now I am taking Doxy. The reason I stopped mino is because i was starting to get minor liver pain (aches). I take 100mg two times a day and on MWF i take up to 400mg total in a day.

I will soon be adding TMP to the program. Phil, said afterwards to slowly introduce Flagyl – I don’t mind.

But, the question ID and I always have is how long?

I will track down Dr. Maz to see if he is wiling to consult with my ID.

Other than this I don’t really see what else can be done.

[Calida]

I looked up the doctor in Florida and his credentials are impeccable.

“Dr. C. is Professor and Chief of the Division of Rheumatology. He also serves as the Director of Clinical Research. His research interests include reactive arthritis, psoriatic arthritis, rheumatoid arthritis, gout, osteoporosis, and drug safety. His research focus is on Chlamydia-induced arthritis. He has published more than 100 original peer-reviewed articles, abstracts, and book chapters. He was awarded a grant from the National Institutes of Health (NIH) in May of 2006 to study a novel treatment for Chlamydia-induced reactive arthritis. He has been awarded approximately $2 million in investigator-initiated grants since 2006. He has served as the principal investigator for many industry-sponsored clinical trials. He lectures extensively and has presented his research on the local, regional, national and international levels. He is routinely selected as “America’s Top Physicians”, “Best Doctors in America”, “Patients’ Choice Recognition Award”, and “America’s Most Compassionate Doctors Award”. He was awarded the Outstanding Faculty Research Award for USF Health in 2012.”

As to how long you must remain on the protocol outlined by your ID doc, that would depend on your body’s response to the protocol. My doctor uses labs and a clinical evaluation every 2 months and adjusts my protocol accordingly based on those results. Chances are good I will continue to take minocycline for the rest of my life and that’s because there is no cure for autoimmune disease. I won’t risk having the symptoms return so, at the very least, I will take a maintenance dose to be determined by my doctor.

I’ll send a private message with the Florida Doctor’s information.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[worldofme]

No cure for autoimmune? even if it is so call ReA?

I will ask my id to call Dr. C. If not then my rehum see if hes willing to reach out. Let you know how that goes. But Dr. C’s research deals with chlamydia induce arthritis.

[richie]

To Calida —Good to see you plan on staying on minocycline forever —relapse in scleroderma is both common and real nasty for folks who go off the med totally –I have seen much too much of relapsing for people who go off it —Evidently you tolerate it well and taking daily probiotic wards off yeast infections -I see no point in stopping –as a matter of fact I still take 200 mg daily and would never change !!!!

[Calida]

Yes, Richie, SD is a formidable monster and I’ve taken a page from your book and plan on staying on the full dose for life. I can’t take the chance and, as you said, I tolerate mino well. As the old adage says, “fool me once, shame on you. Fool me twice, shame on me!”

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Calida]

worldofme wrote:

No cure for autoimmune? even if it is so call ReA?

Generally speaking, autoimmune disease is incurable unless it’s drug induced but I’m not sure about Reactive Arthritis. If your doctor said it may go away then I guess it’s very possible.

worldofme wrote:

I will ask my id to call Dr. C. If not then my rehum see if hes willing to reach out. Let you know how that goes. But Dr. C’s research deals with chlamydia induce arthritis.

Not all of it, Ben. He’s brilliant and thinks outside the box. He received a large grant to study chlamydia but many of his studies concern other diseases (gout, schizophrenia) so it seems his interests are many and varied.

Just my opinion but I think you’d be extremely fortunate to have him take your case and I truly believe he would find a treatment that works for you.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[worldofme]

The worst part of all this is inability to find the bug. 99% of urologist have no clue on how to go about proper testing when it comes to prostate infection.

I can’t be the only person in the world with bacterial prostate infection causing immune mediated response. For last few hours I read Dr. Carters articles and hes right.

First, Dr. Carter is correct that entric ReA go away completely. And TNF blockers proof to be great help. As for genital infection ReA TNF should not be given because there still is a persistent infection which causes immune mediate response.

This I will bring up to rehum in next meeting. I will personally force him to call Dr. Carter.

It makes sense why I feel CRAP and worse in prostate / urethritis symptoms after going on Humira. Humira helped with spinal arthritis.

This all make sense why I don’t feel right or at ease on humira. However, try telling this to my rehum.

But, I also feel money is big motivator for these guys.

The sad part about all this is I can’t find a single person to connect with in similarity.

[Author]

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