Mino or doxy?

[Calida]

richie wrote:

Hi You have much more patience than me in keeping active in that other group –I salute you !!! If you can get even one person interested its worthwhile –

I have to admit. Richie, my patience is wearing thin! But LynneG keeps me inspired 😉

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]

Oops, interrupted while responding by a full double rainbow and hit “send” twice. Anyone know how to delete one of these double responses? I hit edit but it didn’t give me the option to delete…

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

[lynnie_sydney]

done Calida! 🙂 Think only admins have ability to delete

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[worldofme]

I’m not sure if you know but I’ve seen 7 urologist inclung university. None I mean none have seen a case like me. Matter of fact someone claim they hardly see a patient with reactive arthritis. One of the urologist told me that my situation is something he study in med school.

Many of them try doing prostate massage and culture or anaerobic and aerobic along with urine culture and urine analysis. Nothing. Zero. Negative

They’re not sure what to do so they give up telling me do pelvic excerise.

I keep mentionin that my prostate issue is linked to arthritis. Urology dept refuse to believe that

Guys, I have seen 3 id, 7 urologist, 2 rheum, 1 neuro, 1 gi, 3 optomologist in span of 2 years.

No one knows what to do except 1 id doc who thinks there is a biofilm and need to treat it which is way he gives me mino and flagyl.

Lot of the doctors I have seen are in it to make a buck than to figure out what is wrong. No one goes out of the way to research.

If the case is complex they want to pass it on to another specialist.

My current rheum thinks reactive arthritis means immune is mess up and there is not bacteria. I said your wrong.

I know I have anaerobic cooci.

Actually, i would live with joint pain only if I didn’t have spinal pain.

Folks, the only thing that heLPS with spinal pain is humira.

My id recommends I take trimethoprim plus mino or doxy for 6 months straight

I took 1 shot of humira and two weeks later I’m feeling less stiffNess in spine but comes with price I feel more fatigue and dizzy along with chest discomfort

Rehum says continue humira and take antibiotic if id says ok.

Hit it hard for few months then stop humira. Rheum agrees after 3 months stop humira.

His research and peers have mention sometimes Rea can go into remission.

3 months is 6 shots of humira….ummm…

So as you see urologist are useless. The only antibiotics they known is Cipro and Bactrim.

My id says urologist won’t help, there great surgeon but no clue in treating hard to culture obligate bacteria

Matter of fact you can’t culture 99 percent of bacteria

What’s next?

How do you break biofilm if Flagyl doesn’t work anymore?

[Calida]

worldofme wrote:

I’m not sure if you know but I’ve seen 7 urologist inclung university. None I mean none have seen a case like me. Matter of fact someone claim they hardly see a patient with reactive arthritis. One of the urologist told me that my situation is something he study in med school.

Unfortunately, that’s not unusual for many of us. I saw 18 doctors in 15 months as they passed me along to the next specialist. It wasn’t until I saw an LLMD who understood the big picture that I found the right help.

worldofme wrote:

I keep mentionin that my prostate issue is linked to arthritis….
No one knows what to do except 1 id doc who thinks there is a biofilm and need to treat it which is way he gives me mino and Flagyl

What’s next?

How do you break biofilm if Flagyl doesn’t work anymore?

My doctor found that azithromycin, in addition to the daily minocycline, works for me along with a biofilm busting supplement. Here’s a study on azithromycin and biofilm (there are others). The bacteria may be different but this is about zith’s effects on biofilm:

Azithromycin and ciprofloxacin: A possible synergistic combination against Pseudomonas aeruginosabiofilm-associated urinary tract infections
http://www.ijaaonline.com/article/S0924-8579(14)00365-3/abstract

Address the infection and the pain and inflammation will be reduced. A Lyme doc may prescribe LDN. I have 9 herniated discs and degenerative spinal disease and was on pain meds for 5 years before my doctor prescribed LDN in 2013. Since then the spinal pain has been manageable to non-existent without pain medication or side effects. I believe the antibiotics helped that problem, too.

You need to find one doctor who understands the big picture and is familiar with the biofilm issue. Then you need to stay on the same antibiotic(s) for the long run without stopping and starting or changing antibiotics or the bacteria will build up a greater resistance. It takes time and patience but it works.

What kind of physician is an id? Did you have a look at the Lyme doc list for your area?

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

[lynnie_sydney]

worldofme – while your issues are indeed complex and I feel for you, I think a lot of the confusion and frustration stems from the number of conventional docs (of all persuasions) that you have consulted. And many of us here can relate to this. Many people here were originally confused (and often angry) about what they heard from docs they assumed would have answers for them or who would be at least willing to trial antibiotics. The fact is, however, is that most conventional docs do not accept infectious origin/theory, so it eventually becomes clear that it’s futile to attempt to shift them away from the paradigm they accept and persuade them into another that just doesn’t equate with their learning and approach. Why add the stress of trying to do that to the already stressful situation of being sick and in pain? That’s why I (and many others here) moved away from rheumies and other doctors inside that conventional box, and instead chose to keep looking and find one (and sometimes more than one) who was willing to look outside it.

I’m not sure whether ld that you mentioned before means Lyme Doctor (LLMD) or not. But a really good LLMD may be your best bet to partner with – as he/she already accepts infectious origin/trigger (which is absolutely your belief) and treats accordingly. Lyme is now more commonly called mixed systemic infectious diseases syndrome by experienced Lyme medicos and they are used to seeing and treating complex cases of infectious origin chronic disease manifestations. If you have and don’t like what you are hearing, find another one until there is someone you feel comfortable working with. Another option would be to find a good integrative or functional medicine physician. These are docs who are usually across a mix of approaches and who will be prepared to include antibiotics in treatment protocols. Find someone who you feel comfortable working with – and don’t expect immediate answers. These complex disease manifestations take time and patience both to unravel and then to treat.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Calida]

lynnie_sydney wrote:

done Calida! <noscript></noscript> Think only admins have ability to delete

Thanks, Lynnie! 🙂

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]

ID = infection disease. This guy is cool I like him. He has 0 exp with arthritis, but will prescribe if I show him proof of antibiotics.

I can’t not take Cipro, it get ill side effects. What med should i use to but biofilm???

Also, I have the LLMD list I will start making some phone calls. I’m tired of paying out of pocket.

At least I got spine pain under control. I could breath and move around which is big plus, now I’ll approach the antibiotics way.

[Calida]

worldofme wrote:

ID = infection disease. This guy is cool I like him. He has 0 exp with arthritis, but will prescribe if I show him proof of antibiotics.

I can’t not take Cipro, it get ill side effects. What med should i use to but biofilm???

Also, I have the LLMD list I will start making some phone calls. I’m tired of paying out of pocket.

At least I got spine pain under control. I could breath and move around which is big plus, now I’ll approach the antibiotics way.

It’s great that you like your ID. Feeling like you have someone in your corner makes a huge difference, doesn’t it? Especially when compared to the others….

It’s best to leave the biofilm issues to the Lyme docs because what works for me may not work for you. Azithromycin helps with biofilm but your doc may have better choices for your case.

I’m so happy you have the pain under control. How is one supposed to figure out a way out of this mess when pain makes thinking rationally impossible?

Best of luck with the Lyme doc.

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]

It def feels good to have a doc who you can bounce ideas off and learn as well open minded. I don’t like convention medical drugs but I will say this Humira has really given me some hope in fighting this disease. With spine pain under control me and my doc can go work on attacking the root cause which is bacteria in the prostate.

ID doc and I think there is for sure some sort of bacteria kicking back in the prostate perhaps in biofilm causing some sort of immune mediate response. A lot of rehum will not valid this kind of statement. It is rare for individual to have ReA in first place. Just to throw an example, only 40 / 100,000 people get ReA. Rare medical syndrome.

Calida,

I have Azithromax, Flagyl, Doxy & Trimethoprim. From those drugs only Flagyl & TMP helped the most. Perhaps I should see Urologist to find out if i have a Biofilm or abscess in prostate??

[worldofme]

I would hate to go to LLMD explain all my issue and for him to run some none sense lab work and try to put me on some vitamins. I know what I’m treating. I know how to treat it. I just don’t know if I have abscess.

Pulsing is no good and really makes bug-resistance.

[Calida]

worldofme wrote:

Calida,
I have Azithromax, Flagyl, Doxy & Trimethoprim. From those drugs only Flagyl & TMP helped the most. Perhaps I should see Urologist to find out if i have a Biofilm or abscess in prostate??

Different types of bacteria have an affinity for different parts of the body therefore the location of chronic inflammation is an important clue for the physician when establishing the bacterial culprit. It seems logical that a urologist would be familiar with the usual suspects and may be able to identify your problem. However, if the bacteria is drug resistant due to biofilm, you’ll need someone with biofilm busting experience. The identification of the bacteria will help when it comes to the choice of antibiotic(s).

worldofme wrote:

I would hate to go to LLMD explain all my issue and for him to run some none sense lab work and try to put me on some vitamins. I know what I’m treating. I know how to treat it. I just don’t know if I have abscess.
Pulsing is no good and really makes bug-resistance.

Treatments to break down biofilm are in their infancy. In my case, my Lyme doctor is familiar with the complexity of addressing the problem and the latest treatments available. One approach to breaking down biofilm includes enzymes which thin the blood and for this reason alone you need a physician who is familiar with your physiology and history. This is not a “do it yourself” project. You are attempting to destroy something within your body that is resistant to most treatments and a knowledgable doctor will ensure that the powerful treatments involved will not otherwise harm you. The same holds true for cysts and cyst busters.

You know enough about your condition to find a doctor who fits your needs. I understand your concern with regard to vitamins and supplements as I was taking over 42 pills a day prescribed by 3 different doctors. Scleroderma can cause esophageal spasms so I literally spent the whole day trying to get these pills down. I sat down with my Lyme doctor and together we figured out what pills were absolutely necessary to achieve the objective. I now take 5 small pills in the morning and 5 pills at night, including probiotics. I’ve been taking the same antibiotics daily, no pulsing, for over two years.

You noted that you are past the stage of first line treatments as indicated by the bacterial resistance to Flagyl and you have secondary symptoms beyond the site of the original infection that you believe are related. LLMDs run labs to identify and treat the bacteria and complications that cause antibiotic resistance. As I mentioned in an earlier reply, difficult cases (chronic systemic inflammation) are their specialty.

Once an infection has established itself, becomes resistant to treatment and goes on to create systemic problems you need a doctor who sees the big picture. I’ll use my father as an example. He had bladder cancer which was treated successfully by a urologist. Years later, the bladder cancer returned and became metastatic. He didn’t see several different specialists to address the bone cancer, lung cancer, liver cancer, etc. because bladder cancer cells would have been found in every location. He needed an oncologist who treated the various symptoms by addressing the single cause that now operated quite differently from the original disease because it was now systemic. Thank God we’re not talking about cancer in our cases but the principle is the same. You need a doctor who understands that principle.

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, you mentioned that your ID doctor suspects biofilm is an issue. Here are some studies which outline the complexity involved and difficulty treating biofilm.

Biofilm infections, their resilience to therapy and innovative treatment strategies
http://onlinelibrary.wiley.com/store/10.1111/joim.12004/asset/joim12004.pdf;jsessionid=76CE2FD7FC811FCEF2F9702536C54B21.f01t04?v=1&t=ip6qyr0m&s=a87e1dd65558330eacb6bacaa9e10430b3886be9

ESCMID guideline for the diagnosis and treatment of biofilm infections 2014.
http://www.ncbi.nlm.nih.gov/pubmed/25596784

Strategies for combating bacterial biofilm infections
http://www.ncbi.nlm.nih.gov/pubmed/25504208

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

[Linda L]

Calida,
I have tried to open the first link from your last message. It says “You have no permission to access…” Copy and paste didn’t help.
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

[Calida]

Hi Linda,

So sorry, I went to my original file and the same thing happened to me. I found the same study at PubMed. Let’s hope this works!

http://www.ncbi.nlm.nih.gov/pubmed/23025745

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

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