Using your GP for AP

[Marybeth]

Has anyone used their GP to help with administering the use of the antibiotic protocol? I called one RA doctor (Virginia Beach, VA) and they said no and that all papers that were written on the subject were out of date. I have had RA for 3 1/2 years. Currently I am not on any drugs. I manage my disease with diet and supplements. I want to try AP but don’t really want to drive 1 1/2 hours to a doctor. Wondering if I can convince my GP to help me.

[Maz]

@Marybeth wrote:

Has anyone used their GP to help with administering the use of the antibiotic protocol? I called one RA doctor (Virginia Beach, VA) and they said no and that all papers that were written on the subject were out of date. I have had RA for 3 1/2 years. Currently I am not on any drugs. I manage my disease with diet and supplements. I want to try AP but don’t really want to drive 1 1/2 hours to a doctor. Wondering if I can convince my GP to help me.

Hi Marybeth,

As you’re no doubt reading about in the Henry Scammell book, no one wants to study cheap abx for rheumatic disease – no profits to be made. However, there are plenty of more recent studies tying infectious causes to rheumatic disease. You might like to read through the following smattering of studies, which have been included in past RBF eBulletins. The summaries are by my hand, but specific quotes from articles and studies are in quotations. These studies don’t include ones on Lyme disease and other tickborne infections, which is a set of infections that are renowned for causing RA, JIA and other “autoimmune” manifestations, as well:

American College of Rheumatology 2010 Press Release

[Marybeth]

Thanks Maz for all the articles. Looks like I have some reading to do. I just read in the Wall Street Journal that they are doing research work of autoimmune diseases with whipworms. They are sold in Europe but not yet in the US.
http://online.wsj.com/article/SB10001424052970204795304577220993641557460.html?mod=WSJ_LifeStyle_Lifestyle_5

Thanks again. After I finish reading “the book” I intend to see what my GP says.
Marybeth

[vera]

Marybeth,

My GP does all my AP! My rheumatologist was not “on board” with it, until she saw me start to improve. Then she even offered to start prescribing my minocycline for me! However, I prefer to have my GP administer the AP protocol since he more versed in it than the rheumy. 😉

I actually found my GP by “accident”. I sought out a doctor knowledgeable in low-dose naltrexone (also referred to as LDN, something else you may want to research down the road). He tried to talk me into AP, but I was turned off by the idea of taking antibiotics. Then, I did a LOT of research, like you are starting to do, and became convinced I had to go this route. What a blessing AP has been for me.

Best to you!

Lori

[lynnie_sydney]

Mayybeth – when I was on mino therapy alone, my GP rxd that for me over 4 years. He knew I’d educated myself, was prepared to case manage myself and was happy to rx ‘such a benign drug’, especially on a pulsed MWF protocol. My original testimonial from 2007 covers thishttps://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

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)

[Marybeth]

Hi Lynnie and Maz,
Did you have your GP do the blood test to determine the possible bacteria infections or just the usual blood work done for RA?

Thanks,
Marybeth

[Maz]

@Marybeth wrote:

Hi Lynnie and Maz,
Did you have your GP do the blood test to determine the possible bacteria infections or just the usual blood work done for RA?

Hi MaryBeth,

I guess I was in a different position to many, because I knew without any doubt that my RA had been triggered by Lyme disease. Within two months of seeing two bulls-eyes, migrating palindromic muscle and joint pains morphed into fixed joint pain in every joint. I had many of the classic early signs of Lyme, including a very stiff neck and the migrating pains and due to the swift time frame, it was obvious to me what had happened. In spite of two bulls-eyes, my ELISA tests came back equivocal (which isn’t unusual) and so my GP brushed off that it could be Lyme, which was a huge medical error on his part, as bulls-eyes = Lyme no matter what any test says. Suffice to say, I fired him and moved on to my LLMD (Lyme Literate MD). Looking back in retrospect, I probably had Lyme since my first known tick bite around 1998 (possibly even before then as we don’t always see these tiny critters), because I had so many unusual symptoms, never coming all at once and things I just put down to going through mid-life hormonal changes.

Anyway, the long and and short of it is that because I live in CT and had two tick rashes, I pretty much knew Lyme was a major contender. My LLMD at the time tested me through IGeneX labs in CA, which came back IGeneX-positive on a couple of highly significant antibody bands, but this was just for back-up. He had already clinically assessed me for Lyme and I had started treatment right away. The great thing about LLMDs is that they assess all your symptoms and then treat based upon that clinical assessment. Labs can support a diagnosis, but can’t rule out some of these infections, because no test is 100% accurate. As Lyme needs multiple abx to hit its various forms, some of these abx will also be hitting other coinfections. So the idea of Lyme treatments is to get as broad a coverage as possible. They also tend to switch things around to trick the bugs out of hiding. As tetracyclines hit a number of infections (e.g. Lyme cell-wall-less forms, babesiosis, bartonellosis, mycoplasma, etc), you’re getting some hits with just the one abx. However, as some of these bugs are pleomorphic (shape-shift when under duress), combinations (and different doses) are used to hit all forms at once, so a macrolide and cyst-busting med might be added, too.

This might be more info than you wanted to hear, but just thought to add a bit of my history (which you can also read about in my Progress Thread, if interested – link in my sig line), as this explains why I didn’t need to go through any extensive bug testing at the outset.

There are some basic tests outlined on the main RBF website you can look through here:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638

As for testing of bugs, the way Brown did it was to do baseline testing through his lab at http://www.TARCI.net for mycoplasma and a couple other offenders like the chlamydias (trachomatis and pneumoniae) and strep…and then he would do repeat testing over time to watch titers coming down. This testing is quite expensive today, so when people get this done, it is to see if anything shows up at all. In some cases it doesn’t. This doesn’t mean AP won’t work, however. There are numerous strains of mycoplasma, for instance, and they can’t possibly test for all, just the more common ones affecting humans. So, the way Dr. S. in Iowa (on most experienced AP doc list) does this is to get the TARCI tests run and, once there is documented evidence of mycoplasma infection, he can then code the IV therapy as “infection” for insurance purposes. Insurance will cover IVs for documented infection, but not for rheumatic disease. So, while it’s not necessary to have baseline bug testing done in this scenario as it’s just too expensive to keep paying to watch titers come down, it can be helpful to have initial tests run if one wants to pursue the adjunctive IV clindamycin route to support the oral therapy.

Maybe more important is to get Lyme testing run through IGeneX (http://www.IGeneX.com), as so many people who never thought they might be infected are showing up positive or highly suspect for Lyme and coinfections. Getting this test run can help to determine which treatment path is necessary to take. This is because AP docs tend use a low dose monotherapy, but this is not enough for chronic Lymies, who will usually need higher dose therapy in various abx combinations.

There are some folk who don’t bother with testing, will begin on just oral minocycline and do well. However, it’s worth noting that some within this group who do well early may also find they are relapsing later as other infections rise to the surface for their day in the sun. It’s at this point that they need to move on, get more testing run and figure out what else may be in their mix. This happened to one lady I spoke with in MA who remembers a “spider bite” (as diagnosed by her doctor) a few months prior to her RA onset. She happened to bump into Diane Aronson, the then RBF president, who gave her info on AP and this lady went to Iowa to see Dr. S. for the weeklong IV clindy series and to get going on oral minocycline. She did really well and got her RA into remission within a couple years. Then, some years after this she developed breast cancer and had to go through various treatments, which compromises immune function and she relapsed with her RA badly when her immune system started waking up again. She had a really stiff neck and very sore knees and was at the point of deciding whether or not to have joint replacements. When she saw a post on this forum about stiff necks and Lyme, she decided to contact us, found a Lyme doc in NYC, who diagnosed her with chronic Lyme and babesiosis, a malaria-like coinfection of Lyme, and started her on treatment right away. A few weeks later her labs came in and he was right on the money – she was highly positive for babesiosis. She was put on a rigorous routine of various abx and supportive meds, which were rough going for a while, but then she turned a corner after several months of this and was heading back into remission. We spoke on the phone several times over the course of that year and she commented she no longer was thinking she’d need knee replacements.

Although the basic western blot through IGeneX costs around $200, many believe it’s a worthwhile investment at the outset, as it can often shed light on what is going on and what treatment path to follow. For those who don’t have it run initially, but find they plateau or relapse later, they also feel it’s worth running at that stage to see what else might be going on. So, it’s really a personal choice on all this and there is no right or wrong way to go about it.

Both IGeneX and TARCI provide testing kits that they mail out to the patient or their physician upon placing a call to them. I haven’t had an ASO titer drawn as I have a strong strep history and knew it was probably a contender, too. Fortunately, the Lyme abx combinations cover that corner as well as mycoplasma, chlamydia and other infections.

Sorry to share so much at this early stage. I hope I haven’t blinded you with all the info. 😯 My main point is as Lynnie mentioned also…anyone can begin minocycline without running baseline bug tests. There are some instances where it’s helpful, though…as in the case if you want to start therapy with IV clindy or to know if Lyme and coinfections may be involved. Sometimes it’s worthwhile to hear these things early than to find out later down the track. 😉

[Marybeth]

Hi Maz,
It is my understanding that you get a large rash or bulls eye when you have been bitten by an infected tick with lyme. I did not have any such rash. Although I had spent a week in June ’08 on Cape Cod (Fall of ’08 was when I was diagnosed). I’m don’t think I would test positive for lyme. My fraternal Grandmother had RA. Also in 2002 I tested positive for latent TB and 2006 I had a root canal. I’m thinking that it might be related to the root canal. Not to mention since 2002 I have had constant sinus drainage that it makes me cough all the time. I have strong stomach muscles! I have not yet approached my RA doctor if he would do AP (have not seen him in a year). But I am thinking not since he never offered this approach in the first place.
Now I have rambled on.

Thanks,
Marybeth

[Maz]

@Marybeth wrote:

It is my understanding that you get a large rash or bulls eye when you have been bitten by an infected tick with lyme. I did not have any such rash. Although I had spent a week in June ’08 on Cape Cod (Fall of ’08 was when I was diagnosed). I’m don’t think I would test positive for lyme. My fraternal Grandmother had RA. Also in 2002 I tested positive for latent TB and 2006 I had a root canal. I’m thinking that it might be related to the root canal. Not to mention since 2002 I have had constant sinus drainage that it makes me cough all the time. I have strong stomach muscles! I have not yet approached my RA doctor if he would do AP (have not seen him in a year). But I am thinking not since he never offered this approach in the first place.
Now I have rambled on.

Hi Marybeth,

If there is one word of caution I would pass along to anyone considering the Lyme question, as per ILADs treatment guidelines, it is estimated that only 50% of those infected with Lyme will get the classic EM (erythema migrans) bulls-eye rash. It’s very worth reading the full ILADs treatment guidelines PDF just to become acquainted with Lyme, its hitch-hiking coinfection friends, disease presentation and symptoms, as well as the variables of diagnostic testing and treatments:

http://ilads.org/files/ILADS_Guidelines.pdf

“13. Atypical early presentations

Early Lyme disease classically presents with a single erythema
migrans (EM or

[Marybeth]

Good Morning Maz,
I meant Paternal not fraternal, silly me! 😳 Thanks again for the info. I have read a little (the TB) but it goes over me. Not enough layman terms! I am reading The New Arthritis Breakthrough now. I just don’t understand how Rheumatologist disregard the information. Is it that they are lazy and just don’t have the time because of patient overload and so they go down the least resistant road?
I have gotten the AP doctors list for my area. Unfortunately the one in my area looks like a quack. I looked her up on the internet and she had enough bad feedback to scare me away. The next one is 1 1/2 hours away. I have been trying to research my problem now for so long that my husband thinks I am resorting to quack doctors. He understands that I don’t want to take the biologic drugs but he also saw how well I was doing when I decided to go off of Cimzia.

Thanks for listening to me.
Marybeth

[NancyB]

Marybeth,
I am having many of the same questions as you about wanting to find a local doc to treat me. We have been going to a great LLMD out of state for my son and myself…but it is SO expensive and now our new GP is beginning to treat Lyme patients. She initially has shied away from wanting to jump into Lyme treatment for us b/c of our long histories. But, now that I’ve developed RA and money is an issue, I’m hoping that she will agree to treat me, at least for a while, and see how it goes.

I revisited the informational part of this site and found these helpful handouts. It is daunting to try to inform a doctor if you’re not 100% versed in the theory and medical terms of the AP. This looks helpful , though– “How to Approach your Doctor…” along with some other informational hand-outs.
https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_ID/10.html

Good luck…hope you find someone soon,
Nancy

[Marybeth]

Thanks Nancy for you help and good wishes. And may I add to wish you success!
I was so sure my Rheumatologist was going to tell me that he would not do the antibiotic route. Well he called me today and spent quite a bit of time discussing it with me and praised Dr. Brown’s work. OMG, if I had just known this at the beginning! I am going to go see him Friday, Feb. 24th. That will give me more time to read. Plus he wanted to know more about how my “diet” was evolving and if I thought it was helping. I am thinking positive thoughts!

Marybeth

[Marybeth]

What are the differences of using minocycline, tetracycline or doxycycline? I have read that doxycycline presents less of a problem with your gut. Minocycline can cause hyperpigmentation. Does one work better than the other?

Thanks,
Marybeth

[lynnie_sydney]

Marybeth – all 3 are tetracycline antibiotics, tetracycline being first generation, doxy and mino 2nd generation, with mino being the later and with superior lipid solubility, so is able to cross the blood brain barrier.

If you type ‘tetracycline doxycycline minocycline’ into the search box at the top of General Discussion front page, a wealth of past discussion and information on this topic will come up for you to look through. Here is just one link that may be useful:

viewtopic.php?f=1&t=6504&p=56883&hilit=minocycline+doxycycline+tetracycline#p56883

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)

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