Low Dose Minocin Therapy

[itok]

Is this therapy intended for therapeutic treatment indefinitely?

Or do people typically wean off & eventually stop Minocin once symptoms have abated?

[Michele]

Dr. S in Iowa keeps people on AP for life. It appears those who just stop once they feel better, relapse. You may note that there is a rotation of antibiotics.

Michele

[itok]

That is an interesting observation about relapsing.

From the Iowa doctor's observation it looks like low dose pulsing is really just keeping the microbe-induced infections/inflammations suppressed.

It's not trying to “cure” the disease and eliminate the microbes altogether.

[Cheryl F]

Itok,

This is my summary of what one AP doctor we saw said regarding continued need for antibiotic therapy.  Please excuse the over simplification.

This doctor believed that you can not completely get rid of this type of infection.  He said that it is because these “bugs” are parasites and live within other cells.  He explained that because the microbes are within other cells you can beat them back, but you may never fully get rid of them.  His long range plan was that you might taper off the antibiotics, continue to do immune supportive measures, and do a short course of various antibiotics every few months forever. 

I do know of several people who have done AP therapy, gone into remission and discontinued the antibiotics and have remained in remission long term. 

Cheryl Ferguson

[itok]

Hi Cheryl:

Thanks. I am always interested in hearing about those people who were on AP, then discontinued medications and held long term remission.

Do you have rough details about those folks? Like how long were they on AP? Did they do any adjunct therapies such as herbs? etc?

Thanks.:D

[Cheryl F]

A couple examples:

First, the author of the book Rheumatiod Arthritis: The Infection Connection, Katheryn Poehlmann.  She successfully used AP for RA, she has not been on any meds for several years, and remains in remission.  I believe that she does do some immune support supplementation, but I don't recall what specifically. 

Second, a woman by the name of Maureen Taylor, she posts on the RBF BBoard from time to time, she wrote a book journaling her recovery from Scleroderma with the use of AP and the Microbiotic Diet.  She has been in remission for quite a few years and has been off the antibiotic for five years (I THINK, don't quote me on the number but it close).  She continues with a very stict diet, as well, she adds natural antibiotic such as raw garlic to her diet.  So, basically, as I understand it, she is doing some natural antibiotics to keep the “bugs” at bay.  The same general concept as my daugher's last AP doctor had that you need to continue to do immune supportive and anti-micorbial measures indefinitely.

The third person that I have corresponded with personally, is one of the patients whose story is told in the Henry Scammell book, Scleroderma, The Proven Therapy.  She is Tylyn John.  She did the oral and IV therapy under Dr. F in Riverside.  She told me recently that she has been off all meds for three plus years.  She did not mention any supplementation.  She is just very grateful that she has her health back. 

Cheryl

[itok]

thanks Cheryl

😎

[Maz]

[user=140]itok[/user] wrote:

From the Iowa doctor's observation it looks like low dose pulsing is really just keeping the microbe-induced infections/inflammations suppressed.

[/quote]

Hi Itok,

Can't remember if you said you and your wife had managed to read The New Arthritis Breakthrough or not. If you haven't managed to pick up a copy yet, it's well worth the read and should answer all your questions about AP. I keep my copy to hand and have read it several times already. I never was a good student! I still go back to it to make sure I'm interpreting things right and amaze myself at what I missed before…it's a lot to take in for this foggy brain. :blush:

My understanding of Brown's theories (probably weak at best!), is that AP is intended to suppress mycoplasma infection in such a way as to re-train the immune system to take over and do what it's supposed to do on its own. As Cheryl mentioned, it's impossible to fully eradicate mycoplasma. Half the world's population has one type or a combination of them and we're passing them to and from eachother all the time. It's just that in some cases (maybe where there is a precipitating infection/event in combination with a genetic predisposition) the pathogen load becomes too much for a person's immune system to handle and, it is thought, triggers a hypersensitive immune response (like some people are more predisposed to hayfever, for instance). Most AP docs don't believe “autoimmunity” is caused by an errant, out-of-control immune system, as such, but is just that the immune system has become hypersensitized and is just doing what it is supposed to be doing. It's picking up on the antigens and toxins these intracellualar mycoplasma release and just start attacking what it thinks are foreign invaders. Because these foreign invaders happen to be living inside and taking over the host's own cells, the host cells get the brunt of this attack.

Conventional medical wisdom believes that “autoimmunity” is a metabolic disorder – an over-reactive, dysfunctional immune system that requires immune-suppression. Whereas, Doc Brown's theory was based upon the premise that the immune system is doing exactly what it is supposed to be doing and, as such, needs supporting, not suppressing. This theory hangs on the premise that mycoplasma are not your average bacterium that can be killed with a short course of a bacteriocidal penicillin, like strep (and that's questionable, too, because strep has various L-Forms), a low dose, pulsed bacteriostatic in the tetracyline family is used to suppress mycoplasma replication by (it is thought) blocking certain protein and enzyme processes. Unable to reproduce and sustain their populations, they eventually reach the end of their natural life cycle and die off. They are also thought, at certain points in their life cycle, to be more susceptible to the rising and falling antibiotic serum levels. The philosphy behind all this being to get the mycoplasma population down to a level within which the immune system has the ability to take over controlling them on its own. Okay, so this is just my understanding of the process…you'll find a much better description in the New Arthritis Breakthrough.

As Cheryl mentioned, some people's immune systems fully recover and are able to manage the pathogen load quite well once remission is reached. Others, however, may have co-factors contributing to this hypersensitive state (prolonged illness, certain medications, leaky gut, celiac, food sensitivities, coinfections, etc) that will need longterm, possibly lifetime, support.

Salient to your wife's case, she has Lyme, as well as babesia and bartonella coinfections, but fortunately you're already aware that these need to be addressed as an additional pathogen load. As you've already experienced, most LLMDs believe that Lyme needs to be hit hard, but there are also naturopaths out there treating Lyme, so it's really a question of what path each individual feels they must take.

Your wife's dilemna has been mine, too, for this past year and half. For me, I'm currently betwixt and between AP and Lyme therapy. I know if I don't treat my Lyme and coinfections that my hypersensitive immune system will likely not recover from RA on AP alone. So I'm on a combo therapy to address both. I feel that when I got Lyme, in addition to a lifetime of underlying pathogen load, that my immune system just couldn't handle it all. Lyme triggered my RA, in essence.

Hope you both find some answers soon, Itok, and best wishes to your wife.

Peace, Maz

[itok]

thanks Maz. Very informative. I will check that book you mentioned.

[Cubby]

I have met 2 women, in full remission from systemic scleroderma.    They both had been off the AP for over 5 years.

[lynnie_sydney]

Maz
IMO that's a really great – and very accessible – interpretation of the whole infection/mycplasma stance from the Dr Brown perspective. Wow!

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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)

[casey]

Hi

Maz,

You should copy that post for all newcomers, you summed so much up and in simple terms!

Itot,

One person i  talked to was Prof G N ,who has studied this intensively and he also said, you never essentially rid this from the body but after treatment, you can remain healthy by keeping your immune system heathly. He and his associated clinicians did a trial on lupus patients(and many other on different illnesses) but in this particular one , he said 6 out of 10 completely recovered from symptoms. The other 4 partially recovered or didnt respond. Why they didnt respond , they dont know but he found diet was something many patients had a hard time with. Also, from what i gathered but dont quote me on this, the patients use the protocol under “treatment considerations” on his site http://www.immed.org . They do not stay on it like most of us here do. I dont know how old that trial was or what follow up there is on thses patients down the road.

When i spoke to Dr. S in Iowa, he told me NOT to run out of antibiotics and dont stop them .like Maz( i think it was Maz) , he keeps them on it for the rest of their lives.

Maz,

i want to ask you how many abx's are you on at a time with these different diagnosis' and how do you fare with stomach probs and yeast?How often do you switch abx's and how do you know when its time too. Also, This strept thing (or L-form strept) seems to relly have a happy home in my sons body. It flutuates 20 points or so on blood tests but is in a high range. I asked Dr. S about this and he said it could sit like that for 6 months in hiding. GN told me that if nothing changes in 3 months somewhat, time to switch abx. He has been on the same protocol for 4 months, little change in strep though now aneg ANA and DsDNA but a high 1-25 D. (which i am still figuring on how that fits in) How the heck do you know when its time to change something when different docs say different things. Do you change dealing with all this by a set out protocol (not familiar with Lyme) , your test results symptoms or all?

I was also told Lyme can mimic lupus. We were never Lyme checked, but myco pos. From what i gather , it doesnt always show on blood tests. If thats true , how would you know if you have it . And how different is the treatment plan. Also, have you ever heard of a pos ANA and Lyme? If it can mimic lupus in symptoms, can it mimic it in blood tests?

Sorry for all the questions at once!

Casey

 

 

[Maz]

Thanks for your kind words of support, Lynnie. One reads so much material, it quite easy to get ones knickers in a twist over the details, so it's good to have your confirmation. 😀

[Maz]

Hi Casey,

So I don't miss anything, I'm cutting and pasting, rather than inserting a quote from your post. I'll do my best to answer, but can really only relate my experiences and what I've learned, as I'm sure you'll understand.

>>> i want to ask you how many abx's are you on at a time with these different diagnosis' and how do you fare with stomach probs and yeast?<<< Started on one month of doxy with pcp. Too little too late, so chose to seek out a good LLMD. I hit gold finding a Lyme Literate physician whose particular interest was in the connection of Lyme with “autoimmunity”. Here are the protocols he's had me on to date: From Dec 06 to May 07, I was on biaxin (clarithromycin) and tetracycline together in combo with plaquenil (a Lyme cyst buster – I believe the cyst or spheroblast form of the spirochete is just another name for the L-form, but don't quote me on that). Then, after having visual disturbances with plaquenil, I dropped it and my LLMD added weekly bicillin IM shots in June. I was on the shots for 6 months. In July 07, I dropped both the biaxin and tetracycline for a month to go on the “Shardt Lyme Protocol”, which is basically Diflucan twice a day (while continuing the bicillin shots). In early August, I then started started widely-spaced pulsing…one week off, two weeks on biaxin and tetracycline, then one week off and two weeks on diflucan. I did this for 4 months, but didn't fare well and my inflammation markers began to worsen. It may have been herxing, but may also be that I just wasn't ready for these long pulses with weeklong breaks. In early Dec, I dropped the bicillin IM shots and LLMD put me back on continuous dosing of mino (at my request) and biaxin for 2 months. At early Jan 08 appt, he added rifampin, whereupon I asked him about trying AP low dose pulsing. I've continued this combo protocol now for the past 6 weeks and have improved significantly. My RF was down to 44 last week (normal is below 14, but mine was in the 500s at its highest point last Feb), though my anti-CCP is still above 60 and cardio CRP is still hovering around 12. He also tested me for circulating antibodies/antigens, which are high again. Could be due to recent flu, but I also have elevated thyroid peroxidase antibodies, so that could be contributing and abrogating that test, too. So far, no stomach issues or noticeable yeast issues. I take 8 PB8's per day (started kefir smoothies – kefir 'care of' Toni), milk thistle and Vit C and do olive oil/lemon drink each night before bed. For pain, all I need is 2 advil gelcaps per day, though I had a day last week where I went without anything. Ultrasound to knees and ankles really helping! Can't sing enough praises about ultrasound as an adjunct therapy for painful, swollen joints – it works for me! >>>How often do you switch abx's and how do you know when its time too.<<< Basically, I follow my doctor's lead. He suggests options for switching up every time I go to him (every 2 months). We usually decide together, based upon his feelings about a new drug and his insights about drug action/side-effects and how I'm doing. If I'm improving at a good pace, we leave it to discuss at next visit. If progress is slowing, we change up the protocol. I'm hoping to remain on mino, though, whatever else we add or subtract to the regimen over time. >>> Also, This strept thing (or L-form strept) seems to relly have a happy home in my sons body. It flutuates 20 points or so on blood tests but is in a high range. I asked Dr. S about this and he said it could sit like that for 6 months in hiding. GN told me that if nothing changes in 3 months somewhat, time to switch abx. He has been on the same protocol for 4 months, little change in strep though now aneg ANA and DsDNA but a high 1-25 D. (which i am still figuring on how that fits in) How the heck do you know when its time to change something when different docs say different things. Do you change dealing with all this by a set out protocol (not familiar with Lyme) , your test results symptoms or all?<<< As my LLMD says, it's all trial and error with each patient, because each patient is unique in their makeup, genetic predisposition, pathogen load, how they respond to tx, etc. It's more a question of seeing if something works and backing off if it doesn't, as I found with the wide-spaced pulsing (above). It's a dance in a sense that requires constant monitoring of bloodwork and symptomology. So it's part science and part intuitive on my LLMD's part. He's treated many patients dx'd with so-called autoimmune disorders (Lupus, FM, CFS, RA and MS) and has had a lot of success. As such, he collates all this information in the form of stats and case studies and goes around the country speaking to other doctors to try and educate them on chronic Lyme. More than anything, his background in microbiology, his intuitive feel for each patient and his willingness to listen to patient concerns, to think out of the box and try new things (including adjunct therapies like ultrasound and bee venom shots) are what I feel is the winning combination for me. >>>I was also told Lyme can mimic lupus.<<< Yes, it can. And, though I would not want to worry you needlessly, as don't know if your son has Lyme, but it is worthy of note that young boys are the largest population of Lyme sufferers, as they are outdoors, playing in the woods, in tall grasses, rolling around and sleeping with pets and not really concerned about long pants, bug spray or even thinking about the possibility of ticks. So it should be – they're boys just being boys and having fun. CanLyme is a site you might find interesting to read up more about Lyme in Canada and its spread. You might try to do a search on that site for Lupus…I know they have quite a bit of info on MS and Lyme, as I did some searching for my brother a while back. >>> We were never Lyme checked, but myco pos.<<< Well, the confusing part of the picture with Lyme is the transmission of coinfections which non-LLMDs don't normally test for, either. As you know, the Lyme tests are inadequate at best and many test negative…these are stealth pathogens that morph and hide intracellularly, much like mycos. My LLMD explained that fragments from the spirochetes, called “Blebs”, are left behind in host cells and these are what trip up the immune system. He's documented these blebs with high-powered microscopic magnification, studies which have been replicated by other scientists. Then, of course, in addition to the usual coinfection offenders like babesia, bartonella, erhlichia, etc, ticks are also known to pass on mycoplasma, as a coinfection…so these are nasty little blighters, these ticks, and they are thought to be carrying ever more virulant, resistant strains as time goes on. Mosquitos are also thought to be Lyme and coinfection vectors, amongst other 'dreaded lurgies' that they pass on. Nice, huh? Makes one wonder if they will ever wander outside again…but taking adequate preventative measures is largely protective. >>>From what i gather , it doesnt always show on blood tests. If thats true , how would you know if you have it.<<< Yes, that's true…in much the same way as some people don't test positive for mycoplasma, but still have an AI dx. Only a skilled LLMD can truly dx Lyme and coinfections based upon symptomology and patient history (including possible exposure to ticks, whether one has been to or lives in a lyme endemic area, etc). My Lyme doc feels that there are untold numbers of people walking around with Lyme whom may never know it – they are symptom-free (lucky for them), have undiagnosed fatigue or vague symptoms or, in the worst case scenario, they have been dx'd with one of the many “autoimmune disorders.” I once took him a copy of Dr S's treatment protocol (the Dr S in TN not Iowa who treated himself for RA) and he looked at it and point blank said…”Interesting, looks like he was treating himself for Lyme.” Okay, so not saying my LLMD's word is golden and he's the only expert who carries “the golden calf”, but I do find his insights quite fascinating. Ultimately, it doesn't really matter how one became infected, because we are sick and just want to be well. The real concern is figuring out what the pathogen load might be – the main offender and targeting that and any opportunistic coinfections that might be tagging along for the ride – and how best to treat it all. The other question is does one treat myco only and then wait to see if any other coinfections raise their ugly heads later down the line? It may well be that those who do relapse aren't relapsing with the original infection, but with a tag along co-infection that may need a new abx, anti-protozoal, anti-viral, anti-fungal, etc…hence one of the rationales for rotating protocols. how often one rotates really depends on symptomology. >>> And how different is the treatment plan.<<< Well, quite different, as you will note from the protocols I've followed to date. The abx may not be different, but the rotation schedules and doses are pretty different. I'd personally like to keep mino running in the background as a low, pulsed dose, though, while treating all the other possible coinfections. >>> Also, have you ever heard of a pos ANA and Lyme?<<< Yes, in a recent talk my doc gave at New Haven Uni to other docs that was videoed (should be on DVD soon to raise funds for Lyme awareness shortly, he says), he quoted the case of a lyme patient who was dx'd by her rheumy with seropositive Lupus and an elevated ANA. This patient went into remission with his protocols and then moved to Florida, I believe (I'm going on memory here alone, so I may have some facts mixed up with other cases he mentioned in the talk!). The patient remained in remission for 5 years, but then started to regress. After being treated with the standard rheumy drugs and not getting any better, she then returned to him for treatment and is now doing well again. >>> If it can mimic lupus in symptoms, can it mimic it in blood tests?<<< According to my LLMD, a BIG “YES, it can.” His theory is that the two are not mutually exclusive, much as Doc Brown's theories were not mutually exclusive. The Lyme infection triggers an immune response in just the same way as mycoplasma trigger the immune response, as outlined in The Road Back…it's why Brown included a whole chapter about Lyme in the “The New Arthritis Breakthrough”, saying that it was a pretty clear cut model for how a stealth infection creates this type of immune response. My Lyme doc doesn't use the same terminology as Brown, who coined the “hyper-allergenic” term, but it amounts to the same thing. Sorry this is so long…but hope I've covered the corners. Please bear in mind, these answers are limited at best, as my knowledge of it all is still limited. 😉 Like you, I am just learning as I go. Casey, you totally amaze me with your tireless “go get 'em” attitude for getting to the bottom of your family's diseases. I'm truly in awe of your tenacity and 'out of the box' thinking. You're streets ahead of the game in a very short period of time with your pro-activeness. Peace, Maz

[Maz]

PS I've just blown my new resolution to be less wordy!!!! Agh!!!!!! :sick:

[Author]

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