posted
I have been at this a while (since 2013) and am in maintenance mode. I am trying to go 7 weeks off and one week on. I find though that my brain function starts getting worse around week 4.
The rest of my other body symptoms are tolerable and if it weren't for my brain I could tolerate them a lot longer before they got so bad I had to go back on abx.
I end up putting up with the brain thing until week 7 which is when I take the abx (6 off 1 on).
So when I take abx, the brain immediately gets better but my body suffers the consequences of yet more abx.
Anyway. Are the abx helping my brain in any other way besides killing the bacteria? They may be reducing inflammation but shouldnt ibuprofen or some other anti-inflammatory help then?
I think I am beyond the point of diminishing returns with abx. If it wasn't for the brain thing I would accept where I am and be "done".
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
I have always heard that they reduce inflammation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- I think, and also because in my experience, I have never found any anti-inflammatory OTC agent nor herbal or nutrient supplement that came anywhere close to the dramatic improvement in my brain symptoms (and especially to calm hyperacusis) than doxycycline did for me. Nothing else has worded as well.
To be clear, though, I have not had to opportunity to try all that Buhner details in his books (link next post) . . . by the time I found his work, I was out of money but of the few herbs he outlines, I have found that Andrographis was very good for me a few years ago and I use it now occasionally.
[editing here so the flow / segue is jumpy]
but -- oh, oh, oh. I just remembered that PYCNOGENOL was very helpful at first, only the real deal, though. The real French maritime (certain) bark, not from grapeseed or grapeskin.
End of interjection / edit.
back to the antibiotic approach: I think it's a not a good idea to ever treat lyme with any single antibiotic for that can create the chronic / cystic form - no matter at what stage, a combination is best to address all forms
However, since I was not able to tolerate a more comprehenisve approach with the required other Rx to properly go along with that antibiotic, my success in that aspect was limited.
Yet, for a while, once each month, I could take a doxycycline and go to a song circle (or even fly once) and the hyperacusis calmed, I had none of the typical (for me) sound (not even noise, but sound-triggered) seizures for about 6 hours after taking.
As this "wore off" and I tried minocycline to better target my brain, that was a disaster, though, after the 2nd try.
Minocycline was terribly ototoxic for me and made the vertigo much worse so that the room would literally flip in my field of vision.
Just because lyme has become chronic, or even close to remission, I would not discount the absolute effect certain antibiotics can have to come down the actual spirochete action in the brain / body.
Again, I never was able to replicate the hyperacusis / seizure calming in my brain other than with certain antibiotics. Sigh.
However, I will say that since I've been on a ketogenic diet now for a year & a half (and really mostly carnivore the past 3 months now) that while the hyperacusis is still with me,
& a hole in one of my inner ear bones still contributes to chronic vertigo and nystagmus (spasm of the eyes) and magnesium and berberine are solid stand by helpers . . .
with the diet changes I've made, I do not feel like I'm going to fly across the room every time the phone rings. That is much better with keto and even the zero-carb carnivore -- which I'm just trying out to see how that might help further.
I do not advise anyone jump into this, though, now knowing how sugar & insulin in the body can irritate nerve fibers, the brain, etc. It does make sense. I which I had done this decades ago.
It may not "cure" lyme or even put it into remission. Though the betahydroxybururate (sp?) that is produced during ketosis . . . is antioxidant in nature and antiinflammatory.
Also to consider, if multiple things offend the body, addressing even one of those, even if not directly addressing lyme by such action, might lessen the toxic load.
Just my thoughts. And there is much more to it.
Yet, after a gradual decrease in carbs and getting more fat and good proteins, My brain is on a good track.
For more detail, see the websites for
LowCarbUSA - and see the Provider tab . . . etc.
Virta Health . . . Dr. Sarah Hallberg . . . Dr. Stephen Phinney
. . . Dr. Eric Westman . . . to get an idea of what low-carb and (lower carb) ketogenic involves and how it might be of help.
Another consideration in my case is that the low-carb, lower carb keto and even now zero-carb is diminishing exposure to lectins and oxalates in plants. That seems to be helping reduce inflammation for me, too.
In addition a high fat approach with, yes, animal fats, has helped my brain a lot, I sense.
Just don't jump into this way of eating all at once. There are preparations and things to learn. But it sure gives me hope for my brain. Just something to think about, perhaps - for some people (though it would not be for everyone, of course).
For starters, you might get a home glucose meter and just see what your glucose readings are various times and especially certain times after consuming certain foods.
Dr. Ken Berry's YouTube video with "sugar" in the title explains more.
Regarding good (animal fats) see: Nina Teicholz' work and videos . . . and Dr. David Diamond's work / YouTube presentations and his recent DietDoctor Podcast interview with Low Carb Cardiologist Dr. Bret Scher. It's excellent.
Glucose Meter:
DiaThrive is an affordable glucose meter. No prescription required for any model, though, most at pharmacies are rather expensive.
I hope this detail might of help. Take care. -
[ 11-26-2019, 05:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- You might study the books / article / website for a very LL master herbalist: Stephen H. Buhner.
He books are superb in detail and his knowledge is top notch about the properties of herbs and herbal combinations. -
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Keebler
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posted
- Another very possible option to achieve your goal over all this: Rife has helped many make really good progress, even good solid remission.
RIFE Machine - ATreatment Alternative - Reference LINKS -
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Keebler
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- Thoughts keep popping into my head.
From what I know and have experienced from "leaky gut" I know I'm certainly not going to ever take lightly putting anything into my mouth / stomach that can compromise the endothelial layer of the GI tract.
It's just causes so much damage - in so many ways, to the entire body and immune system, actually, to have stuff going through the gut lining that should not be circulating in the body.
Even some herbal formulas can compromise the gut lining, especially if they contain lectins or oxalates. And this may be why Buhner suggests tintures instead of the actual plant matter being ingested (or just one reason of many?)
I'm hoping that some of the other options (especially rife) will prompt your attention. Good luck.
Since the gut takes such a hit from antibiotics (and also from so many other Rx, OTC . . . gluten, etc) this might be of help.
He does not talk so much about "leaky gut" yet includes various inflammatory bowel disorders in the list:
I have a book by Buhner but I haven't looked at it in a long time. Time to dust it off.
My diet is pretty good. Low carb, gluten free and sugar. 98%of what I eat is low oxalate although I dont count them to see what my total intake is for the day Oxalates are a big issue for me.
I will look through my diet and see if it high in something else.
I am sure my stomach is not in the best shape. And as I hit it every 8 weeks with abx I dont think it will ever have a chance to recover. I am trying to get out of the "starve" yeast and bad bacteria mentality as it occurred to me that I was also starving the good stuff.
You mention the endothelial layer. I assume all antibiotics harm this?
My son's LLMD has him taking a couple herbs along with his abx. I might try those instead of abx one cycle.
I have never looked into rife. I probably should but I am so tired of going down another costly rabbit holes.
It seems all parts of my body except the brain are screaming at me to stop the abx.
I wonder if there is a way to tell what part of the "brain" is inflamed. There are a lot of pieces under the skull.
Posts: 832 | From Somewhere | Registered: Nov 2010
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I was searching on line and found the results of a study done by John Hopkins (I know not the best but the authors of article acknowledge this).
quote:Either way, the study suggests that antigens that remain in the CNS after antibiotic treatment appear to be the cause of persistent inflammation, which may be linked to the neuropsychiatric symptoms of PTLDS
Posts: 832 | From Somewhere | Registered: Nov 2010
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quote:Originally posted by terv: I was searching on line and found the results of a study done by John Hopkins (I know not the best but the authors of article acknowledge this).
quote:Either way, the study suggests that antigens that remain in the CNS after antibiotic treatment appear to be the cause of persistent inflammation, which may be linked to the neuropsychiatric symptoms of PTLDS
That means if I never used Abx I should avoid it and instead search for alternatives?
Posts: 68 | From Germany | Registered: Nov 2019
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No I didn't interpret the study that way. Abx reduce inflammation which could be why my cognitive issues reduce when I take them. I think the above study points the finger at antigens (whatever they are) as a reason for inflammation. Maybe if I could somehow get those under control I can get off abx.
IMO I think one needs abx, at some point, to treat lyme. I dont know if any other really effective way to reduce the bacteria load besides them. There are herbal protocols available that you can look into (Buhner, Cowden) and other stuff.
Abx have worked wonders in my family. My youngest son got ride of asthma, pots, swollen joints, and cognitive issues using them.
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Keebler
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- From my file notes: on the importance of addressing the infection, no matter how long it's been on board, how complicated it's become.
Also keep in mind that treating a new, acute case of lyme is far easier than an established chronic lyme, and chronic babesia, etc. . . .
- Strength of medicines important consideration.
Body weight may change Rx dose -- but the liver / kidneys always have to be support, no matter what.
While regarding antibiotics or other anti-infective Rx, the same principle is important to remember considering herbal supplements - RIFE - or whatever methods employed.
And that is why it's so important to have an ILADS-educated LLMD or an ILADS educated LL ND (naturopathic doctor / herbalist, etc.) to guide any alternative treatments.
Bacteriostatic vs. Bactericidal (or similar thought to viruses, parasites, other infections besides bacteria).
Is the medicine strong enough to get you past the finish line or just keeping you managing better? A question we all have to keep in mind through the entire process.
Thanks to BigStan who posted this in another thread:
Bacteriostatic vs. Bactericidal levels of certain antibiotics. Each different Rx would have to be considered regarding this issue, too. This paragraph is just about the Tetracyclines.
Page 18:
Tetracycline- Adults only, and not in pregnancy. 500 mg tid to qid
This still leaves room for new thoughts about what can make certain meds work better, timing, combinations, etc.
I would trust no doctor, though, who is not thoroughly seeped in the science of lyme, how it works in all it's forms & stages . . . and all the other infections that could be on board, too.
I know no other group of doctors who are more aware and educated of the science of lyme than those who regularly attend ILADS conferences, and are at the forefront of the real science of lyme and the art of treatment.
If some doctor(or some article) says, oh, it's all just "post-lyme" and that some short course of single treatment would have worked so that any symptoms are now just "post-treatment" -
- when treatment was not adequate -- they are clearly not adequately educated in the actual science of lyme. The term "post lyme" is beyond a disservice. I think it's beyond medical negligence, too.
Controversy continues to fuel the "Lyme War" - Clinical Advisor, 2007
[section] Treatment dilemmas . . .
. . . Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . .
[note: this does not refer to chronic lyme, though, it's about a brand new case. And even then, after 30 weeks' treatment, lyme can still turn out to become chronic.
another note: while I think it's vital to study all the ILADS' LLMDs articles / books, conference notes, etc . . . antibiotics might not be the only way, of course.
However, whatever is used MUST be functionally able to do the job regarding how it directly affects the infection.
Support supplements can be of help & some are very important if not essential (like magnesiu) but a very careful approach to both direct anti-microbial action and support is key.
How long for that direct support? How to approach "direct anti-microbial methods? We - hopefully the ILADS educated or equally lyme educated LL NDs or similar, will mirror the thinking behind the Rx protocol regarding
what is bateriostatic and what is truly anti-bacterial, etc.
And, I know we are are weary, thinking surely, the infection must be gone by (some point in time). But we have no proof of that. It's often wishful thinking.
Still, sure, all klnds of Rx can cause all kinds of trouble for the gut, etc. And that's why, how, when, where the other methods can help -- as long as they also consider the science of how these infections work.
For instance, many have seen success with rife treatments - though it takes a calculated approach over time.
Some of Buhner's books are top-notch in their detail. They also require a thoughtful, systematic approach over time.
There are other ways but the science has to be considered. --
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Keebler
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- The very LL author, Pamela Weintraub overcame lyme, and her entire family also dealt with it.
My notes are a bit dated though the concepts are still valid. Be sure to search for more recent articles / lectures / books from any LL link posted. Again, a few key points from my notes, at that point in time. See what's new, though by your own searching.
[bad note-taking here. It's not clear if the first part of this is an excerpt or this poster's comment. Sorry. Link should clear it up, though.]
For patients with tick-borne diseases, the path to health can be confounding. Combining integrative and conventional approaches may be the best way forward.
. . . What’s more, many of these hard-to-treat patients, like Makris, turn out to have co-infections transmitted by the same black-legged ticks that gave them Lyme — infections that don’t always respond to treatments for Lyme disease itself. The blood parasite Babesia, for example, must be treated with antimalarial medications.
And, the co-infections Anaplasma and Ehrlichia do not respond to amoxicillin, a first-line antibiotic often used for Lyme.
Even if these and other co-infections are addressed, [Dr. H] says patients can stay sick for many reasons beyond simple infection itself. . . .
See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and write about her entire family dealing with it in "Cure Unknown" book )
I have often wondered why I, who weigh 110 pounds, get the same dosage of someone heavier.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Keebler
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- Or did someone heavier get the same dose as you? Did you get "correct" dose at all? For long enough with the "correct" combination, "correct" rotation time, pulsing? There's a lot to consider.
And, since "cookbook" approaches to all this just don't work very well for everyone, it's hard to know what's the right treatment. The right treatment is what turns out to work and that is most often different for each person. It's never static.
Add to that whether your body was able to fight, if your gut became "leaky" which is an inherent risk to many Rx . . .
the "leaky gut" issue is a major one as even if the "correct" dose, time, combination, pulsing for your particular mix of infections was just hunky dory perfect . . . how the gut lining behaves can make or break a treatment approach, too, as it can clobber the immune system big time to have leaky gut.
And, some of the symptoms we might attribute to chronic lyme, et all - can often be for other reasons such as lectins or oxalates in the diet.
While treating leaky gut won't cure lyme, not being mindful of it can derail treatment approaches, too.
I've been learning so much about that lately. you might enjoy the presentation that involves immune function and the gut lining:
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