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» LymeNet Flash » Questions and Discussion » Medical Questions » Is periostat (20 mg doxycycline) for life a viable option?

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Author Topic: Is periostat (20 mg doxycycline) for life a viable option?
ohioperson22
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For someone who can't really tolerate 200 mg doxycycline for very long (due to severe headaches, malaise, panic attacks, adrenal suppression, fatigue, and increased intracranial pressure), is taking 20 mg of doxycycline once a day for life a viable option?

The 20 mg dosage is designed to be taken for 9 months for dental infections caused by other spirochetes in the mouth.

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Keebler
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No.
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Keebler
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Lyme, other tick-borne infections &/or other chronic stealth infections require well formulated combination / rotation protocols.

20 mg. of doxycline is not about to make a dent, and it could cause a lot of harm in many ways. If one has a dental infection (and that is not clear by your question, there would be more to discuss but one's LLMD should be in on the matter).


How taking just doxycycline (or any antibiotic) can cause Chronic Lyme:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme


http://www.lymenet.org/BurrGuide200810.pdf

Go to page 13, the last paragraph.

Bacteriostatic vs. Bactericidal consideration


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too, to better tolerate treatment.

HOW TO FIND an ILADS educated LL ND Links here, too - if one wants to explore various options in treatment, they would also need to be well-considered combination / rotation protocols.
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[ 05-11-2016, 05:13 PM: Message edited by: Keebler ]

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randibear
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I'm currently on 250 of biaxin twice a day for a gum infection. my dentist is lyme literate and he advised it won't touch lyme. said most abx used for dental problems wont.

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do not look back when the only course is forward

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ohioperson22
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That Ilads link (and MANY others posted on this site) takes you to a "404 Page not found" site.

Just FYI

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Keebler
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Thanks for letting me know. link has been corrected above & in my file notes.

When a link is out of date: Google the title, author, etc. and you can usually easily find the document.

Often an URL will be changed as sites are updated. It can be very hard to keep them all current when they are part of a collection set that evolves over time -

- yet Google can usually find what you are looking for with key terms. Put terms or "sets of words or title" in quotes and the author's name outside of that.
-

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ohioperson22
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I want to understand this better...

Are you saying that monotherapy with doxycycline is worse than taking no antibiotic at all?

(Forget the 20 mg dose I was talking about...)


I appreciate the links about herx support, but not all adverese reactions/side effects of doxy (or any anitbiotic) have to do with herx reactions. Increased intracranial pressure, fatigue, adrenal suppression, nausea, etc have nothing to do with bacterial cell death.


Also, FYI, Page 15 of that document has an error. Males should have a lower QTc than females.

Also, for males a normal QTc is below 430 ms, and for females below 450 ms.


I appreciate the effort to note the QT-prolonging dangers and avoid combinations of QT-prolonging drugs, but so many of the regimens stack up two to three QT-prolonging drugs.

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Jordana
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The real challenge right now in Lyme is actually tolerating the antibiotics you need to take. High doses, for long periods, in combination is no cakewalk, especially since there are two problems -- your reaction to the medicine, and the herx.

It's worse than taking no antibiotic at all in my opinion. Doxycycline is bacteriostatic anyway and and that dose might just get them to start making cystic forms.

The best thing to do is work out a therapy with a doctor who understands Lyme. There are different abx to try in combination and also ways to get around side effects -- for example increased intracranial pressure sometimes responds to diamox.

You need an LLMD.

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randibear
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as I understand it, one drug alone may, and may is the operative word here, be worse than no drug at all.

lyme must be treated with multiple abx approach. like taking flagyl along with other drugs.

I know people who are taking 3 or 4 abx. good for them but it would practically kill me.

all depends on what the individual can handle, how long they've been ill, coinfections. lots of things.

best leftup to drs.

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ohioperson22
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quote:
Originally posted by Jordana:
The real challenge right now in Lyme is actually tolerating the antibiotics you need to take. High doses, for long periods, in combination is no cakewalk, especially since there are two problems -- your reaction to the medicine, and the herx.

It's worse than taking no antibiotic at all in my opinion. Doxycycline is bacteriostatic anyway and and that dose might just get them to start making cystic forms.

The best thing to do is work out a therapy with a doctor who understands Lyme. There are different abx to try in combination and also ways to get around side effects -- for example increased intracranial pressure sometimes responds to diamox.

You need an LLMD.

I'm seeing an LLMD... I'm pre-treatment, because after first appointment he ran a bunch of tests, some of which are not yet in. And he will not treat me until all of the tests are completed.
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ohioperson22
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Yeah, randibear... I'm in that boat... taking some of the regimens suggested would actually probably maybe kill me (for different reasons).

I'm surprised that such sick people can handle all those drugs. I couldn't...


I'm also riveted, absolutely riveted that doxy is worse than no drugs at all. Absolutely amazed it is better to let the spirochetes multiply at their own will, then--at worst--encyst some of them into hiding.

I need to let this information sink in.

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Jordana
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I'm glad you're seeing an LLMD OP. They'll help you figure out a regimen you can tolerate.

Doxy is actually turning out to be a bust given new studies. There are stories of people who are functioning on long term high dose doxy, which was probably better than nothing in the late 90's.

Doxy is bacteriostatic unless given at HIGH doses, like at least 400 mgs a day. But the problem is that given new research it forces the Lyme to encyst twofold. So it can bring people to remission over very long time periods, theoretically, but theoretically they can't EVER stop taking it.

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Keebler
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It's not remission if it's not addressing fully all forms - and just allowing it to hibernate.
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ohioperson22
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I've spent a lot of money on lab tests recently, but I may spring for the blood DOT-blot as well as multiplex PCR for lyme.


I want to know if I actually have active lyme in me.

My symptoms (and symptom timing) well may be from mycoplasma, HSV-1, and/or chlamydia, or yet-to-be-diagnosed communicable disease.


Just before submitting to potentially life-threatening antibiotic assault, it'd be nice to know that lyme is in fact there.


Or, if nobody can get rid of all the spirochetes anyway, might as well lower the load with one drug than be a martyr and not take any because of fear of cysts.

Nitroimidazoles are nothing to sneeze at. They are serious drugs.

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Keebler
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All this is daunting, I know. It would be easier, better to not be ill at all yet information you already have can be of great help to get started, whatever paths you consider.

You do not need another lyme test, IMO.

With the positive #39 on your western blot (from your previous posting of test results), lyme is certainly highly likely and in line with your symptoms.

People CAN recover.

I say this in a kind voice, as I assumed a lot about lyme for years - and I was so wrong. Please hear this in caring tone of voice. I may "sound" loud or strong because I know what untreated - and under treated - lyme can do.

Please Be careful about making assumptions about any treatment path as each one is tailored to the patient. Even if strong drugs are used, liver / kidney and other support measures that most LLMDs use can help.

And there are other ways to still directly and assertively work with borrelia.

Not treating lyme PROPERLY (by understanding the science of it) is also "nothing to sneeze at" for lyme can be devastating beyond all belief.

Borrelia does not work with the notion of "lower load" by using low dose drugs - this can boomerang big time. The science of lyme is very complex and it's no time to be making bets.

There are various approaches but whatever path taken really must consider the science of how borrelia works / does not work.

Whatever assumptions or questions you have can best be explained by an experienced LL doctor when you can be there in person and they can see the full picture (and consider various coinfections after seeing you).
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[ 05-12-2016, 06:04 PM: Message edited by: Keebler ]

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Keebler
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You mention chlamydia. It may be easier to find a doctor who is expert in this protocol and it often mirrors that of lyme. As most lyme doctors know about Cpn, I don't know but suspect that most Cpn doctors might then also know more than average about lyme.

You can check on finding a doctor here, if finding a LLMD is not possible for you.

Also, if you test for this, be sure to do it to their exact specifications on the type of test and the labs used.

www.cpnhelp.org

Chlamydia pneumonia
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desertwind
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Doxy allows me to live a very full and normal life now - after being very ill for 15 years.

I have been on just about every known abx combo to treat every known form of lyme (and multiple co-infections of course...) - including the new protocol for persistent lyme. Have taken cyst busters as well.

Of course all of this helped but at the end of the day I am chronic and have resigned to that being a fact of my life.

To that end, when I feel a flare coming on, Doxy along with a cyst buster is the first abx I reach for. It allows me to be active and engage in life in a very fulfilling way.

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ohioperson22
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Thanks for the words, Keebler.

I hear what you are saying.

And yeah, I'm freaked by all of it, all angles of it.


But like I said in another thread, my LLMD won't treat me until my one IGeneX lyme antibody test is in (which may be a couple or more weeks out)... So in the meantime I still have myself on 200 mg doxy/day, as I feel I HAD to do that, and it's what I could do. Maybe it's better than nothing, maybe not, hopefully not worse.


EDIT: I don't doubt my western blot results that show I've been exposed to borrelia before; I'm more wondering if there are enough bacteria for the DOT-blot or PCR to show up positive (especially the DOT-blot, since I'm on ABX).

I know lyme is/has been there. I question whether it is causing any symptoms right now, or even active right now.

[ 05-12-2016, 09:51 PM: Message edited by: ohioperson22 ]

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ohioperson22
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About the chlamydia, my LabCorp "Chlamydia" IgG test (which does not distinguish between the three forms) was 1.5 (positive >1.0). That may just mean at one time I had the sexual kind (C trachomatis).

I subsequently ordered my own Chlamydia pneumoniae IgG and IgM from Quest, so that will be back in two weeks (due to another test on the same lab order taking two weeks).


In late september of 2015, I had an encounter where I'm 95% sure I contracted HSV-1, chlamydia, and a cat illness. Although I felt like complete **** before then, 3 weeks later "the sickness" started. That's when I started feeling like people in lyme documentaries (very bad).

Logically, I've had lyme in me for anywhere from 2 to 10 years, but something changed in both august and october of 2015, and I'm pretty sure it wasn't the addition of lyme.


I mean I already know I've been exposed to Mycoplasma pneumonia, and reading what they do to cellular energy stores, that's more in line with my situation (or so I think).


And, not to sound "loud" myself, but one thing I'm struggling with is the fact that I do not, and have NEVER (even at my worst) had joint or muscle pain. That seems a hallmark symptom of lyme.


As an aside, assuming all of this has been long-standing in my body, the only antibiotics that ever really worked were fluoroquinolones, specifically levaquin.

After just a five day course of 750 mg levaquin two times last year, the sickness inside of me had been lifted and I felt like a million bucks.

Mycoplasma? Chlamydia (any kind)? I don't know.

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ohioperson22
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Also struggling because it seems most people on sites like this one have "chronic lyme," as opposed to (or ever had) an acute lyme emergency, like lyme carditis* or full-on acute lyme meningitis**, two things which even the traditional medical community recognizes are serious-enough things for which 28 days of intravenous ceftriaxone is necessary.

It's like, how bad is it if it's not one of those things? Nothing to sneeze at, for sure, but worth it to risk cancer or permanent nerve damage from a nitroimidazole?

Or risk sudden cardiac death from a cocktail of drugs recommended by a physician who in his own published lyme guidelines made some pretty significant errors writing about the subject (which on so many levels calls into question the entire document)?


*I searched this site on google for the term "carditis" and I don't think one person, on a lyme forum, said they had it. Now, that doesn't add up for me. Nobody on this entire site had AV block from lyme? Really?

**one person on another non-lyme forum talked of his sudden development of lyme meningitis (landing him in ER) with subsequent paralysis. He got his 28 days of IV ceftriaxone, recovered, and went on with his life.

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bluelyme
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I have a right bundle branch block ...i feel itnis lyme related ... i just was told to start taking alinia a nitroimdazole ..and i did just find a protozoan infection they are saying is toxoplasmosis. .i think it is the fry bug...wtf do i do ..op question every thing ...floroquinalones ar nothing to sneeze at ..a sulfa drug flipped my world last year so here i sit injecting rocephin into my chest...and i ate a carcinginic cystbuster yay

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Blue

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Jordana
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Well, I had meningitis that I kept trying to get diagnosed and treated at ERs and was turned away and sent home for about a year. They kept telling me that I would be in much more pain, wouldn't be able to walk and I would have a higher fever.

I had LYME MENINGITIS and had no luck at all getting diagnosed with it. In fact it was that lack of diagnosis that made me sit here waiting for neurology appointments for nine months when I could have been TREATING THE LYME.

These migraines and occipital pain and "neck full of fluid" I describe now along with the endless trembling -- that's the "chronic" part. Now I have late lyme.

OP...antibiotics are warranted to kill and manage bacterial infections. You will not get nerve damage from the azoles faster than you would from Lyme.

By the time you get to the end of the internet what you will have figured out is that science and medicine have not caught up by a longshot in figuring out how to treat late lyme in people. Instead we've got LLMDs who are willing to try to figure it out on behalf of the patient.

The reason people treat this for so long is partially because a good deal of it is still trial and error. There is no standard of care. You can research the best abx combination down to the bottom of pubmed and realize after two years it was a bust. Back to the drawing board. Most mainstream doctors aren't interested in trial and error. They like things that correlate neatly in databases so they can get on with their lives.

In "late lyme" the fact is that there is always a response to treatment but "relapses are common." So people, reasonably, demand more treatment. Sometimes the relapses stop. Sometimes they don't.

Usually, eventually -- they do.

What we're really doing here is matching the risks of chemotherapy against the risk of letting this thing progress on its own. Most people pick A.

Try endocarditis, or pericarditis.

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TF
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I never had joint or muscle pain.

Regarding lyme carditis, good luck finding a doctor to diagnose you with that. My girlfriend had a heart attack that baffled the doctors because she didn't have any blocked arteries.

Years later when I ran into her, I took her to my lyme doctor who diagnosed her with lyme, babs, and bart.

And, for sure, no doctor (except one of our lyme specialists) would diagnose a person with lyme encephalitis or meningitis. That is because they have all been taught that lyme is so RARE!

See this:

"Lyme encephalopathy is a rare neuropsychiatric disorder, predominantly affecting memory and concentration."

http://jid.oxfordjournals.org/content/180/2/377.full

This is STILL the party line being put forth by the infectious diseases society and all ID docs and they are the specialty that is supposed to treat lyme.

We are all being treated as mental cases thanks to the misinformation given out to our doctors by the IDSA.

So, that is what explains why we are not being diagnosed with these things and coming on this board and talking about it.

Even though I had abnormalities in my brain MRI and the report said "lyme cannot be ruled out" the neurologist my primary sent me to yelled at me "You do NOT have lyme in your brain. Do you hear me?"

I told him about my wordfinding problems and memory problems and derealization that occurred as I drove to his office that day. I gave him my positive LabCorp lyme test at my first visit.

And, still he refused to give me any treatment because my spinal tap was negative for lyme and everything else. That is the state of affairs, ohioperson, even in 2016.

We have all experienced this. Why haven't you? I was humiliated by doctors for 10 LONG years before I finally got a doctor (an endocrinologist) to think to test me for lyme disease. For 10 years, because I never saw a bulls eye or an attached tick, didn't get joint pain or a swollen knee, no doc would test me for lyme. And, I went to the best including Johns Hopkins in Baltimore.

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TF
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See this 2-year-old thread on the subject:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=127207;p=0#000001

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bluelyme
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Thanks tf...your testamony gives me hope...

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Blue

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