Mycoplasma Testing

[CurlyinNC]

Hi, I’m new to this forum and am a bit overwhelmed at this point. I am unclear as to whether the mycoplasma testing is necessary to start AP therapy. My doctor has agreed to help me and has said she will start me of 50 mg minocycline daily and then increase to 100 mg. She has said nothing about testing. I am concerned about my doctor’s ability to see me through this process since she is not experienced with this protocol. I have read the book, The New Arthritis Breakthrough, and many of the educational articles the Roadback website. Still, it’s hard to put all the pieces together.

I have been give Dr. S.’s name and phone number, but he is available for specific hours only on specific days. When I called during those hours, no one answered the phone. This didn’t give me any peace of mind.

I want to have the best chance of seeing improvement since I am in the early stages of the disease.

RBFV Edit to remove AP doctor’s full surname as per forum policy to protect physician privacy. Thank for your understanding.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Maz]

@CurlyinNC wrote:

I am unclear as to whether the mycoplasma testing is necessary to start AP therapy.

Hi Curly,

Here is a recent post that should help to provide an answer to your question on myco testing.

viewtopic.php?f=1&t=12491&p=77740&hilit=tarci#p77736

[m.]

Hi Curly,

Yes, it’s confusing at first! The AP is not one size fits all. Some people do run mycoplasma testing first, others do not.

I did have a set of tests run by TARCI (former name of the lab) before beginning antibiotics. I was tested for antibodies against four strains of mycoplasma, presence of mycoplasma by PCR, both chlamydias, and strep.

The Historical Protocol here at RBF says it’s important to screen for candida (fungal overgrowths) & strep. My understanding is that if you are positive to either, your outcome on the AP will improve if you clear those infections.

Some people, especially those with long standing disease, jumpstart the treatment with IVs.

Some start with a pulsing dose MWF, others daily. Some start with Minocin, others Doxy. It seems to me protocols fall into three broad categories: scleroderma, RA, and Lyme. Which category you find yourself in will play a large part in choice of antibiotic (s) and dosing pattern.

I had a sudden arthritis flare, seemingly out of the blue. It may have been Reactive Arthritis; I’m not sure. I was tested via TARCI. I was negative to strep. Positive to mycoplasma by PCR & antibodies.

After discussing it with my doctor, I decided to start with a low dose of Doxy, reasoning that I could raise it with time, or switch to a stronger abx like Minocin down the line. In other words, I did not want to start out great guns and have a butt kicking Herx reaction. I was advised to “Find the lowest dose that works”.

Again, this is not one size fits all. Many, if not most, tweek the protocol as time passes. If you look at my signature, I’ve recently added Azithromycin to my Doxy protocol because over the last year-year & a half, I’ve noticed increased pain & swelling.

What disease are wrestling with and for how long? Are you on conventional arthritis meds?

[CurlyinNC]

M,

Thanks for your input. I was diagnosed with early RA in Oct 2014. The only thing I’m currently taking is Naproxen 500 mg bid. As you can see, this is very new to me! I wanted to start the AP before having to get on any high-powered toxic RA meds. Truth be told, I could manage on Advil, but my doctor said to have any effect on the inflammation, I would have to take 800 mg three times per day, and she felt it would be more harmful from a GI perspective.

My doctor will help me get started, but so many people who post here are on multiple antibiotics and seem to constantly be tweaking the cocktail. It’s more than I can comprehend since my doctor is not experienced with this treatment so I feel that I need to be the educated one. I don’t even know which antibiotics would be effective or even which ones are available. I am allergic to azithromycin (Zpack) and am wondering if this means I won’t be able to take Minocin or Doxycycline.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[mary77]

Hello…and welcome to this helpful site!
You mention being “allergic” to azithromycin. Minocin and doxy are of a different family of antibiotics. If you do not have an allergy to the tetracycline family of antibiotics, you should tolerate them.
My suggestion (after MANY years of illness, RA and Lyme) is to try the minocin…maybe 50 mgs 3x week to see how you feel. This isn’t a race to the finish..it is a slow and steady process. Patience and persistance are needed to be successful with this protocol. Since you say you are early RA, you might do very well with AP. It is certainly worth a try!
Dosing the antibiotics varies for all of us, but RA people seem to be much more sensitive. Keep that in mind if you begin this therapy.

Good luck and keep asking questions…there are so many helpful people on this site!
Mary

[CurlyinNC]

Hi, Mary. Thank you for your encouraging words. I’m glad to know that azithromycin is not a tetracycline. I wasn’t sure since so many folks seem to be using both. My personality doesn’t lend itself to a lot of trial and error so I have some adjusting to do! I just seem to be afraid all of the time, worrying about what is to come. I suppose I’ll eventually adjust. I’m so anxious to find something that will work before I have joint damage. Thanks for the suggestion on the dosage. When you say that RA people seem to be much more sensitive, do you mean to reactions?

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[mary77]

Curly,
Dr. Brown mentions the hypersensitive “bacterial allergy” state of many with RA. It seems we become allergic to the toxins produced by the bacteria, especially during the “die-off” period. Those of us with longer standing disease are probably far more reactive to the antibiotics because of this “allergy” reaction from our immune systems.
I do believe you are making a good choice to treat this in the early stage before joint damage occurs.
Mary

[m.]

@CurlyinNC wrote:

M,

Thanks for your input. I was diagnosed with early RA in Oct 2014. The only thing I’m currently taking is Naproxen 500 mg bid. As you can see, this is very new to me! I wanted to start the AP before having to get on any high-powered toxic RA meds. Truth be told, I could manage on Advil, but my doctor said to have any effect on the inflammation, I would have to take 800 mg three times per day, and she felt it would be more harmful from a GI perspective.

My doctor will help me get started, but so many people who post here are on multiple antibiotics and seem to constantly be tweaking the cocktail. It’s more than I can comprehend since my doctor is not experienced with this treatment so I feel that I need to be the educated one. I don’t even know which antibiotics would be effective or even which ones are available. I am allergic to azithromycin (Zpack) and am wondering if this means I won’t be able to take Minocin or Doxycycline.

Hi Curly,

Catching the disease in its early stages is very good for your prognosis on AP.

Have you read thru the Historical Protocol here at RBF? Watched the video with Dr. Brown?

As I mentioned before I started low & slow. 50 mg Doxy on MWF. When I increased to 100 mg MWF, I took the Doxy in a divided dose on those days (50 + 50).

I was at peace with this disease on Doxy alone for 6-7 years. Then, for whatever reason, I was starting to get sore again. Menopause? Who knows! That is when my doctor suggested adding Azithromycin.

Like you, I could probably manage quite well with Advil, but as you mentioned, there are side effects to consider re: NSAIDS.

You know the protocol is working when your symptoms improve & your labs improve. It is often said that sometimes labs improve before symptoms, and sometimes it happens the other way around and symptoms improve before labs.

Some local doctors will seek the advice of more experienced AP doctors. That is another option. Some people travel to see a more experienced AP doctor, and then continue to work with their local physician too.

There are many paths!

[CurlyinNC]

M,

I can’t thank you enough for your continued encouragement. Every time someone replies to my post I get some tidbit I can use. Thanks for recommending the historical protocol. It is indeed very helpful and should help me steer my doctor. I am feeling a little more hopeful today. I think starting out slowly is definitely the way to go.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[m.]

@CurlyinNC wrote:

M,

I can’t thank you enough for your continued encouragement. Every time someone replies to my post I get some tidbit I can use. Thanks for recommending the historical protocol. It is indeed very helpful and should help me steer my doctor. I am feeling a little more hopeful today. I think starting out slowly is definitely the way to go.

You’re welcome!

Don’t forget to heed the Historical Protocol & rule out strep!

[Author]

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