Any Lyme patients switching from high dose to low dose abx?

[kbv]

Hi – I’m new here. My 12 years old son has been on high dose abx for over a year for Lyme under the care of a Lyme literate MD His symptoms are mainly neurological. I’m wondering if anyone with lyme has successfully switched from a high dose to the low dose antibiotics and kept Lyme symptoms at bay. We are tired of the high dose antibiotics. Thanks, Kristin

[Maz]

@kbv wrote:

His symptoms are mainly neurological.

Hi kbv,

Does your son have a rheumatic disease along with his Lyme disease?

[Lynne G.SD]

Hi Kris;
I have and am doing well.Sine you are new and not made many posts yet I can’t send you a private message.E-mail me at lynneandsantos@citenet.net and I will pass on the info I have.
Lynne

[kbv]

Hi Maz, He had a high ANA titer when he was first diagnosed but it was largely ignored by our llmd and others. More recent labs show normal ANA. Autoimmune seems to be shifting to other areas – thyroid, PANDAS, anti-neuronal antibodies etc… I’m sure it will come back around if we don’t get things under control. Kristin

[Maz]

@kbv wrote:

Hi Maz, He had a high ANA titer when he was first diagnosed but it was largely ignored by our llmd and others. More recent labs show normal ANA. Autoimmune seems to be shifting to other areas – thyroid, PANDAS, anti-neuronal antibodies etc… I’m sure it will come back around if we don’t get things under control. Kristin

Hi Kristin,

ANA is often elevated in Lyme disease patients, according to Dr. H. in NY – have you seen his book, “Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease?” If not, it’s very worth the read, because he talks about a multi-pronged approach to treating chronic illness, because to just throw abx at a chronic Lymie is like just removing one nail from the sole of their foot, when they may well have 13 other nails still stuck in it. 😕

You mentioned your son has thyroid issues and ANA can be elevated for reasons other than a rheumatic disease. E.g autoimmune thyroid diseases in children:

“High prevalence of antinuclear antibodies in children with thyroid autoimmunity.“

http://www.ncbi.nlm.nih.gov/pubmed/24741574

“CONCLUSIONS:
ANA positivity was demonstrated in 71% of children with AITD. ANA positivity was not related to overt immune-rheumatic diseases. However, because the positivity of ANA can occur even many years before the onset of systemic autoimmune diseases, prospective studies are warranted.“

There can be so much overlap with things – rheumatic and neurological – with Lyme disease, because it is “the second great imitator,” so am wondering it there is much else anyone can add in this group, because the focus here is on rheumatic disease and its infectious causes. As your son presents with neuro symptoms, it might not be so helpful to you to learn what rheumatic/Lyme patients are doing.

As far as I know, however, if your son’s neuro symptoms aren’t yet in remission, then reverting to a low dose protocol probably wouldn’t be a wise move at this stage, as it might just push his Lyme into cystic forms and biofilms (as per Eva Sapi) that will plague him for a very long time. Lyme and coinfections are such tricky organisms and are pretty different from the low dose protocols Dr. Brown used for mycoplasma. In other words, they might keep your son in a holding position, but not really get him fully well again. On the other hand, some chronic Lymies find they just can’t tolerate high dose abx (gut issues, unbearable rounds of herxing, inability to detox, etc) and must revert to low dose just for some quality of life.

Have you tried asking on LymeNet what others are doing for pediatric cases of neuroborrelioisis? Would hate to lead you in the wrong direction, Kristen, but sure hope you find some answers to help your young man. Neuroborreliosis is a persistent beast and, living in CT, I have a few friends who have it and have managed to push it into remission with months of IV abx, but when they stop it inevitably comes back in rounds again. I’ve read that it can take as long as a person has had Lyme to get rid of it…but again, every case is unique and, as your son is young, he stands a very good chance of knocking this into remission with the right kinds of supports – targeted and individualized – to his treatment.

[kbv]

Hi Maz,

Thanks for your feedback. I didn’t know about positive ANA and thyroid autoimmunity! Thanks for the link. I do have Dr. H’s book – it’s really excellent.

I found you all in kind of a round about way. My son is about 90% back to normal as long as we keep up the IM bicillin. Autoimmune is creeping up, so there is likely still some infection lingering. But at this point what’s he’s left with is no longer acute infection, but low level chronic stuff.

I started wondering whether the antibiotics were helping in some other way too. His immunologist mentioned once that the antibiotics might be helping with autoimmune. Google led me to the Marshall Protocol and this page: http://mpkb.org/home/protocol/mp_antibiotics/dosing

I find that description of the differences in antibiotic dosing very interesting and possibly helpful for my kiddo. It seems like the low pulsed antibiotic dosing is based originally on Dr Brown’s work, even though it is no longer a focus in that protocol. I checked in my pediatric lyme/pandas Facebook groups and no one is doing MP or low dose antibiotics. Some are pulsing high dose antibiotics. A few have considered the Marshall Protocol, but no one has taken the leap. I’m not sure our son’s doctor would prescribe the other MP medications even if I had a comfort level with them. Many of the other helpful aspects of my son’s treatment protocol are not permitted on MP – so their full protocol is out for the near future.

I’m mainly interested in learning about how the low pulsed dosing works and about indications that it might/might not work. You all seem to be the only folks doing focusing on it. Good idea to check on lymenet too.

Thanks for your time, Kristin

[kbv]

Lynne – thank you! Sent you an email! Kristin

[Maz]

Hi Kristen,

@kbv wrote:

I found you all in kind of a round about way. My son is about 90% back to normal as long as we keep up the IM bicillin. Autoimmune is creeping up, so there is likely still some infection lingering. But at this point what’s he’s left with is no longer acute infection, but low level chronic stuff.

Depending on his pathogen load, my guess is that his LLMD will probably want to keep the requisite treatment going until all symptoms and labs are resolved for a period of time. Penicillins have worked really well for my Lyme/RA, too (and I have a strong history of strep), but I was never on just one abx without also being on either a combo abx protocol or strong herbals (both to hit all forms of the Lyme bugs) and switching things up at intervals to keep the bugs on the run.

Road Back Fdn doesn’t have the resources to offer any insight with MP as it is an entirely different protocol that is based on a particular rationale. The CIR (Chronic Illness Recovery) group is probably a good bet for you to learn more about the neo-MP approach…I think it was a group that evolved from MP, but Lynne G. can likely tell you more about that.

I’m mainly interested in learning about how the low pulsed dosing works and about indications that it might/might not work. You all seem to be the only folks doing focusing on it. Good idea to check on lymenet too.

Well, low dose abx intermittent pulsing was adopted by Dr. Brown who was a rheumatologist (for whom this foundation was founded to preserve his legacy). Brown practiced for about 5 decades, treating thousands of patients with all kinds of rheumatic diseases with AP (low dose antibiotic protocols). The rationale for using abx in this way was because he was targeting what he believed to be the causative agent of rheumatic diseases – mycoplasmas – that caused a kind of “bacterial allergy” in rheumatic tissues. Essentially, too much die-off creates intolerable herxing for rheumatic patients, especially those with a lot of pre-existing inflammation, so lower dosing was the only way to treat this sub-set of patients without sending them further into paroxysms of pain. Mycoplasmas, as you probably already know, are cell wall-deficient bugs that grow and replicate slowly, which (unless treating an acute infection, like m. pneumoniae) don’t actually require high daily dosing. Bacteriostatic abx are used because they work very well, intracellularly, with this type of bug….whereas penicillins work differently, targeting cell-walled bugs and have no effect on mycos. As your son does best on a penicillin, a low dose protocol with a tetracycline probably wouldn’t have much effect for him and may set him back. Penicillins are “bacteriocidal” (kill bugs outright) and target the cell wall of cell-walled organisms, like spirochetes. Interestingly, though, minocycline (in a daily dosing schedule) is being used for MS and other neurological diseases, because it has very good neuro-protective props. In low doses, tetras have bacteriostatic props, but will have some bacteriocidal props when used in higher doses. To use a penicillin in a low, pulsed dose might just create resistance issues with both the Lyme and strep (needs to be given in a way to keep serum levels constant), unless your son was also on a combination protocol of some type. This is why LLMDs usually prescribe a tetracycline in much higher doses than Brown would have used, as used in this way they have both bacteriostatic and bacteriocidal props that help to target all forms of borrelia.

This link explains how bacteriostatics work:

http://en.wikipedia.org/wiki/Bacteriostatic

“Bacteriostatic antibiotics limit the growth of bacteria by interfering with bacterial protein production, DNA replication, or other aspects of bacterial cellular metabolism. They must work together with the immune system to remove the microorganisms from the body. However, there is not always a precise distinction between them and bactericidal antibiotics; high concentrations of some bacteriostatic agents are also bactericidal, whereas low concentrations of some bacteriocidal agents are bacteriostatic.“

If you have an interest to read the book, The New Arthritis Breakthrough, by Henry Scammell, which describes Brown’s work in detail, you’ll also find a chapter in the book on Lyme disease. The original book, The Road Back (which is included in the Henry Scammell book), was written by Brown sometime in the 80s, very shortly after Lyme was first identified as a spirochete by Willy Burgdorfer and not much was known about the bug way back then. However, Brown said in the book (page 295) when describing the hypersensitivity that rheumatics experience with excessive die-off:

[PhilC]

Hi Kristin,
@kbv wrote:

My son is about 90% back to normal as long as we keep up the IM bicillin.

Is that currently the only antibiotic that your son is on?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi Kristin,

Regarding the Marshall Protocol and Lyme Disease, you should read these comments:
Karen’s comments about using the Marshall Protocol for Lyme Disease
LimeEone’s comments about using the Marshall Protocol for Lyme Disease

Here’s an excerpt from Karen’s comments:

“But I would like to relate the experience of 5 people in our local support group that did the Marshall Protocol for at least 5 months, some longer. I do not want to start an anti Marshall Protocol campaign. But my observations of 5 Lyme patients taking high dose Benicar, (including my son), was that the protocol was worse than the disease. It gave new meaning to the word suffering.”

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[kbv]

Hi PhilC,

No he is not using just bicillin! But it’s the only one that seems to make a difference on his neuro issues. We pulse the others 4 days a week (colloidal silver, zithromax or biaxin, flagyl or tinidazole). We did several months of Byron White herbals and the full Cowden herbal protocol. The oral abx are hard on his gut, so I have slacked a bit on them lately. I’m beginning to wonder if we might not end up on years and years of abx and not able to get off them.

The bit about the MP that is appealing to me is the idea of using the abx in a way that boosts immune function rather than suppresses it. Hard to figure out whether, when, and how to make the switch. Especially when the periodic giant hit of abx he gets with the IM Bicillin works so well. And…he seems to do really well on anti-inflammatories.

The Vitamin D avoidance/Benicar stuff is much less appealing. Thank you for links to feedback on MP/lyme/kids. My instincts are that we should not go down that particular road right now. I also wonder if GcMAF might not serve the same function…and that would require much fewer lifestyle changes.

I do believe the roadback approach might have some application to his situation. I just haven’t sorted it all out yet.

Thanks, Kristin

[PhilC]

Hi Kristin,
@kbv wrote:

The bit about the MP that is appealing to me is the idea of using the abx in a way that boosts immune function rather than suppresses it.

Unfortunately, that may be all that it is — an idea. Please read my previous comments
about the MP that are located here: Re: Marshall’s protocol.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Krys]

His symptoms are mainly neurological.

Hi Kristin,
Is your son on a gluten-free, dairy-free diet?

I think I’m cured of Lyme, Bartonella and Babesia but my gut health is far from good and I still get neurological sx whenever I consume gluten and dairy.
My Lyme manifested with all kinds of symptoms, the most scary being MS. When the die-off was intense and I cheated on diet, the neurological sx were hitting the roof and sometimes I felt as if I was going insane. Candida always intensified all neurological sx.
Keeping gluten-free, dairy-free diet and doing regular detox have been huge help.
Krys

[PhilC]

Hi Kristin,

I recommend studying the info on this web page:
Kills Lyme Germs: A Brief Antibiotic Guide.

I believe that information may be very helpful.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[prioris]

I have looked at the Marshall Protocol for ME/CFIDS.

When I read “The Marshall Protocol, sometimes referred to as the MP, was developed by a team led by Trevor Marshall, PhD, as an antimicrobial treatment for chronic inflammatory diseases… chronic inflammatory diseases are sometimes referred to as the Th1 diseases. “

That … TH1 disease … threw up a big RED FLAG. I just moved on. Not a big surprise that it has failed so much. Removing vitamin D … yeah right.

Some other people pushed the methylation cycle theory. That promptly went into my waste basket. Massive failure on that too.

[Author]

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