Mino or doxy?

[Linda L]

This one is OK. Thank you.
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]

Here is the thing – I have been to s many urologist – none wanted to do culture or figure out what the bacteria is. I had to go on my own to find a special lab that does the testing. Urologist want to give me some medicine and say it should work if not then you have chronic pelvic pain.

In other words, when doctors don’t know or have a clue they like to label you with a syndrome and say nothing can be done.

I even went to univ level Urologist a king of prostate infection who has written articles about biofilm…When I saw him I had high hope that he will be able to culture. But I was disappointed. He said you can’t culture bacteria in prostate its hard etc….and move on.

Whatever is causing inflammation is the source of arthritis. Even Humira barely touch the surface for arthritis.

My question how can LLMD doctor find a source of infection when all other docs have fail, especially genital source?

I have being reading about LLMD and most want to put you in expensive abx and vitamins…

[worldofme]

Actually, my family doctors is LLMD and he basically has given up. Hes like I don’t know and let the specialist figure it out. I keep telling him about my urogenital prostate issue and he keeps telling me well you have been check by Urologist nothing I can do…

This doctor of my works with Dr. L. S. LLMD…so you tell me what should i do now?

RBFV edit to remove LLMD’s full name as per forum guidelines to protect Doctor privacy.

[Maz]

There is a rheumatologist, in Florida, who has conducted studies on Reactive Arthritis patients who he has treated with various combinations of antibiotics for two different forms of chlamydia. He is some distance from you, but I recall that one or two men in this forum have consulted this doc in the past. He may or may not be able to help you, but just thought to pass this along. He is the lead author of this study (more on pubmed.com).

Note that he used combinations of either Rifampin/doxy or rifampin/azithromycin. Resistant infections often require a combination 2-3 hit approach.

http://www.ncbi.nlm.nih.gov/pubmed/20155838

Some integrative docs are also using biofilm busters like IV EDTA or silver nitrate nanoparticles, about which you will find plenty of conventional literature online. E.g the llmd that Calida and I both see uses a compounded herbal, called Artemisinin Essentials that is combined with ALA and EDTA in a liposomal capsule. The goal of this formulation is to assist the medication to break thru biofilm so that the artemisinin can reach its target. There are other herbal biofilm busters that you might be interested to look at, too. It’s not uncommon to have to become one’s own advocate with this stuff, because what works for one person may have little or no effect on another.

It might be important to note that researchers debate the risk/benefits of biofilm busting, because biofilm is both protective to bug and human in a symbiotic kind of way. By releasing bugs from biofilm, there is potential for releasing otherwise innocuous bugs into the mix that may also cause issues. So, a carefully measured approach should be considered. I saw an article in the Washington Post a few years ago about this issue and will try to dig it up again.

Here is the article:

http://www.washingtonpost.com/wp-dyn/content/article/2009/03/08/AR2009030801778.html

“By understanding the factors that are needed for biofilms to develop, we hope to identify chinks in the armor that can lead to novel ways to treat or prevent such kinds of infections,” Romeo said.

But dispersing biofilms without understanding all the ramifications could be a “double-edged sword,” Romeo warned, because some bacteria in a biofilm could wreak worse havoc once they disperse.

“Simply inducing biofilm dispersion without understanding exactly how it will impact the bacterium and host could be very dangerous, as it might lead to spread of a more damaging acute infection,” he said.”

[Calida]

worldofme wrote:

?….He said you can’t culture bacteria in prostate its hard etc….and move on.
Whatever is causing inflammation is the source of arthritis…
My question how can LLMD doctor find a source of infection when all other docs have fail, especially genital source?

If the experts told me that the bacteria can’t be cultured, I would believe them and change my focus. Whatever the infectious microbe is, it responds to Flagyl and that information is valuable.

worldofme wrote:

I have being reading about LLMD and most want to put you in expensive abx and vitamins…

Is that what your LLMD/family doctor did?

worldofme wrote:

Actually, my family doctors is LLMD and he basically has given up. Hes like I don’t know and let the specialist figure it out. I keep telling him about my urogenital prostate issue and he keeps telling me well you have been check by Urologist nothing I can do…

This doctor of my works with Dr. S., LLMD…so you tell me what should i do now?

As a fellow patient, I can only relate my experience and share the information that supported my decisions. You have to decide what your next step will be.

Have you seen Dr.S.,LLMD? He has 30+ years experience and accepts insurance. Have you been tested for Lyme/co-infections, mycoplasma? Since your ID suspects biofilm is the problem, did he/she suggest how that problem should be treated?

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]

Maz wrote:

There is a rheumatologist, in Florida, who has conducted studies on Reactive Arthritis patients who he has treated with various combinations of antibiotics…. He is the lead author of this study (more on pubmed.com).

Note that he used combinations of either Rifampin/doxy or rifampin/azithromycin. Resistant infections often require a combination 2-3 hit approach.

http://www.ncbi.nlm.nih.gov/pubmed/20155838

Ben, do you think your ID doctor would be willing to contact the Florida doctor Maz mentioned above? Perhaps these two physicians may be the right team for your situation…

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]

Calida,

My family physician owns the office Dr. S LLMD uses. I asked my doc about and he said no need to see him he will see the same notes me and he won’t do much.

As, regards to the articles about reactive arthritis – my ReA is not trigger by chlamydia.

Matter of fact I tested negative for all std, and believe me I was tested every two months for two years straight nothing.

I had my urologist do vigorous prostate massage then I would urinate inculding prostatic secretion into sterile cup and we would send that out for bacteria culture along with chlamydia, mycoplasma and trich test. Nothing negative…

So if chlamydia a well known trigger or arthritis would have been picked up. I would assume at least.

ID doc says it’s hard to culture bug if it’s not ones offer testing by labcorp. A very sophisticated equipment are needed.

It would be easy to treat if I was chlamydia positive. Rifamin and doxy..id knows about this but he said no point since chlamydia urine naat is negative. I was also tesTed for chlamydia igg, igm along with 3 other forms of chlamydia – negative.

Plus I have taken doxy as soon as I was exposed.

Could there be new species of chlamydia not detected?

Flagyl, is only drug that help. No body knows why including my family practice llmd.

All the doctors I’ve seen no one has really seen reactive arthritis like my form. A very agreesive progressive arthritis also cause of AS.

I will ask id to contact dr. Maze.

I email dr. Carter leading doc in arthritis and he never got back to me.

I know my source of arthritis is from my prostate, has to be. I never had any other health issue.

The reason I stop seeing other doc and rehum is because they all like to label me as some form of autoimmune…ms, as, rea, etc..all autoimmune is cause by bacteria if u ask me. Rehum will not acknowledge this. I hate it.

I don’t know what else to do.

I’ve spend nearly close to few thousand dollars on this.

Trimethoprim seems to help with prostate but not arthritis.

Flagyl Def took all arthritis pain except spine which could be a whole different issue.

Id will give me Flagyl but it Doesn’t work anymore.

What bug could it be? Did I pick it up from dirty towel , table or skin?

I can’t believe how I could have picked up something dangerous.

[worldofme]

I got the nasty look from my rehum when I told him a 15 dollar drug helped more than 4000 dollar shot humira.

I told him to research infection cause but he won’t do it..lazy..wants to treat by rehum book..
A walking wiki…

I kept telling everyone let’s research why Flagyl helps, but none of the doc knew why and my urologist kept saying it’s a good immune modulator.

It’s like I know these docs can’t do anything and no one is going to keep giving me abx…

I hope you all but one thing I learn was lot of these doctors will tell you once arthritis is trigger nothing could be done except slow down the immune system.

[worldofme]

Yes I have been tested for all infectious disease including lyme…

I had every single blood test for infection and every single urine test for infection that lab Corp has to offer.

Entire immune lymphocyte subset panel…you name it..

All test negative.

[Maz]

I think you have a good point, Worldofme, that your health concerns could be separate issues or infections. Quite often, people aren’t dealing with just one bug, but a number. It could be you’ve been looking for bacteria in the prostate, for instance, but the issue is a protozoan infection (e.g. trichomoniasis, which has been tied to prostate inflammation and other more serious things). Klebsiella pneumoniae and the chlamydias have been tied to reactive arthritides most often in the literature, but all types of arthritis that react to infections should be classified as “reactive.”

The reason I mentioned the rheumy in FL, is because he has taken the view that reactive arthritis can be treated with long-term antibiotics and docs like this tend to be a bit more open-minded to looking for infectious offenders. There’s no guarantee he can help and he’s not likely to respond to a person’s email who is not a patient, but your ID may be willing to connect to consult on your behalf. The other thought is that the type of testing you’ve had may not be adequate…e.g. PCR testing requires the person to be off antibiotics for about a month and standard Lyme tests are notoriously inadequate, which is why folks get specialty labs run. You’ve been on a number of antibiotics in the short term and haven’t stuck with one path, so this may have caused some issues, stirring up other things. This is a long, slow path to remission with no overnight miracles, so patience is key, as well as working with a doc who knows his/her stuff.

I agree…taking this path is not easy and it is costly as most docs who adhere to infectious theory do not accept insurance as they are offering a totally different paradigm of care. Not sure there is anything else to suggest as it might take seeing one of the more experienced AP docs or LLMDs who could look outside the box to get to the bottom of this, but it’s a bit like going down the rabbit hole.

[worldofme]

It’s something that’s for sure otherwise if it was inflammation humira should have help.

Well I send my semen sample to Bedford research lab last week. They use pcr testing for DNA of bacteria I semen.

Let’ssee what those results are.

I do like your point about trich and klebsilla.

My wife does not complain of genital symptoms. Could she harbor trich or any of my disease causing me issue?

How does that have impact on pregnancy?

[worldofme]

Would trich be cured by my endless consumption of tindamax and Flagyl.

My gosh I’ve taken so many Flagyl weekly course this year. Always being 2000mg a day for 3 days or 1000MG a day for 5 days then few days off then taking it again.

Just saying would my spouse not complain if it was trich?

[worldofme]

I was off antibiotics for 2 weeks. Was that not enough for pcr testing of semen sample.

Bedford research lab has prostatitis kit.

[Linda L]

Worldofme,
Humira did not cure my inflammation at all. In fact it nearly killed me /three pneumonias/ It decreased my immune system rapidly.
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]

How many shots you took before you got infection?

[Author]

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