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OriolCarol
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   Posted 4/7/2018 8:33 AM (GMT -6)   
Does anyone have proof of any study done with doxycycline in patients with ALS? Dr. Martz comments that doxycycline does not improve, but it was obvious ... he only take 200mg of doxycycline a day, far from the minimally bactericidal dose, starting at 500mg. With this example and with several patients treated with insufficient doses of doxycycline (below 400mg), worsening their symptoms by the reaction of herxheimer, it was concluded that doxy worsened the ALS patients, but I ask , could not it be that it was simply because dosages were not dosed correctly? I do not want to be excepted, but in a study done with minocycline at low doses, many patients worsened, probably because of the herx (interestingly, this antibiotic penetrates well the bbb), with doxy the result was similar (another antibiotic with good penetration of the bbb), however with ceftriaxone the results were null, neither worsening, nor improvement (avoiding the case of dr martz), and curiously this antibiotic does not meet the criteria of the two previous ones, it is not soluble lipo and is greater than 500 daltons ..

I could prove it in myself, two weeks taking only ceftriaxone and nothing happened, but whe i puted a very low dose of minocycline (only 100mg), my tongue, where i have the worms twitching, started to twitck more, more ramps and muscle twitching... i think it can't be coincidence...

mpost
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   Posted 4/7/2018 11:03 AM (GMT -6)   

OriolCarol
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   Posted 4/7/2018 11:18 AM (GMT -6)   
It's the article that i read before.

Clinical deterioration was faster in the minocycline group than in the placebo group

It could be a herx... or maye not... it's what happened me... exactly the same thing. If i wouldn't have other symptoms like arthritis, arthralgias, tinnitus, cognitive issue etc... the stupids neurologists that said me that i didn't have lyme, now they diagnosed me with ALS and if i would take minocycline and i would deteriorated i would be in the group that the deterioration was faster on minocycline than in placebo group.

bluelyme
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   Posted 4/7/2018 2:41 PM (GMT -6)   
for me and the other als survivor i know iv rocephin and bvt has got us living again ...bartonella/ myco must be addressed asap imo when i took only 1 abx it was ineffective and they drove deeper in the nerves worsening my symptoms ...when i did riffy zith was hard but worthwhile followed by zhang hh2 /allicin which was just as strong .BARTONELLA HAS 2 CELL WALLS TO GET THREW! i think we need dual killing agents on deck when fighting for our lives...

Post Edited (bluelyme) : 4/7/2018 2:46:09 PM (GMT-6)


OriolCarol
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   Posted 4/7/2018 5:18 PM (GMT -6)   
Bluelyme, when you were taking one abx, what abx was and dossage?

I have symptoms of bulbar ALS. My dossage of cef is 4gr and yours? Thank you!

bluelyme
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   Posted 4/7/2018 6:35 PM (GMT -6)   
it was bactrim - messed me up fierce ...i theorize that it sent bugs running thru my vessels walls and that presented as vasculitis / nerve damage , neuron motor dysfunction, demylynation , hypoperfusion ...

i did 1+ year of ceftriaxone pulsing 2g a day (3-4 days a week) ...with herbs, orals, alinia , venom, rife and others...

i called dave martz clinic and spoke to the fnp ...she starts als on roceph, riffy ,zith and tinidazole until plateau

sebreg
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   Posted 4/8/2018 8:39 AM (GMT -6)   
I'd love to see thorough, fair studies done with various abx combos (over various treatment time frames) and how it affects patients with neurodegenerative conditions (MS, ALS, Parkinson's, etc). Problem, like you mention, is the worsening of symptoms will too often be considered an allergic reaction when often it is a herxheimer response. And my intuition would be if the infections have played a role in causing the neurodegenerative condition the herxes are likely going to be very difficult and it will be a long treatment road (maybe because the infections are so established and have high loads? that's just a guess on my part).

Also, if infections are playing a role, it would make sense that each patient has different infection make-up, hence patients will respond to different abx and different combos.

I hope your treatments help you find lots of progress for your health!!!

mpost
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   Posted 4/8/2018 11:47 PM (GMT -6)   
u should never treat neuro lyme or related long term autoimmune conditions created by infections with just one antibiotic, intravenous or not, they are inferior to combinations.

u need at least 3 , 4 in some cases, taken at same time, to achieve some progress.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/

there are absolutely no studies done for treating these diseases with combinations of the lyme antibiotics, which is VERY SAD. im absolutely sure some of these patients can be saved with proper abx combos for at least a year, if they are able to tolerate the treatment

OriolCarol
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Date Joined Dec 2017
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   Posted 4/9/2018 2:56 AM (GMT -6)   
I think the problem is more related to antibiotic doses, than to the combinations ... There is no study done in ALS patients with 4g of ceftriaxone and tinidazole or doses above 600mg with doxycycline, or 400 mg of minocycline ( as soon as the patients deteriorated with mino, the dose was reduced or the treatment stopped)

mpost
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Date Joined Feb 2015
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   Posted 4/9/2018 3:45 AM (GMT -6)   
OriolCarol said...
I think the problem is more related to antibiotic doses, than to the combinations ... There is no study done in ALS patients with 4g of ceftriaxone and tinidazole or doses above 600mg with doxycycline, or 400 mg of minocycline ( as soon as the patients deteriorated with mino, the dose was reduced or the treatment stopped)


No OriolCarol, it's the combination. Take a look at this table, ceftriaxone leaves 68% of persister form borrelia alive:
journals.plos.org/plosone/article/figure?id=10.1371/journal.pone.0117207.t002

C is control (water) , so ceftriaxone + C means only ceftriaxone

Notice Doxy with C leaves 72% alive !!!

Doxy with rifampin leaves 60% alive. so a bit better.

However take a look at Doxy+CefP+Dap (Doxy + Cefoperazone + Daptomycin) = it leaves only 19% alive!! That is WAY BETTER than anything on that table.

This type of research has first been done in 2015, most mainstream doctors are clueless about borrelia being able to survive one antibiotic let alone 3, It's because everybody tested the early borrelia infection which has no persister bacteria and when Doxy achieves 92%+ kill rate and the rest of the bacteria is quickly removed by the immune system.

Take a look at this table

journals.plos.org/plosone/article/figure?id=10.1371/journal.pone.0117207.t001

In the first 3 days of infection, doxy is almost totally deadly to borrelia killing more than 92% of all bacteria.

7 days later, some of the borrelia bacteria has already created "strongholds" meaning they switched to persister round form, and then u see doxy leaves 71% alive !

10 more days and u have doxy leaving 80% alive, basically it gets closer to no activity at all. It is a miracle some people still recover with doxy, months after being infected... It's such a bad treatment for lyme persistent form ... Probably the people with very strong immune systems are helped a bit by antibiotic and manage to conquer the infection on their own. But if u stay years with this borrelia in your blood, it's game over for doxy to help you win.

So this type of study shows it all, in clear light, for everyone that has eyes and knows basic arithmetic to see. There is no point in asking around or see what other members of the forum think. You can make your own judgement by just looking at these tables. It's not rocket science.

OriolCarol
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Date Joined Dec 2017
Total Posts : 563
   Posted 4/9/2018 4:12 AM (GMT -6)   
Yes, you're right mpost but this study is in vitro... we should take something that make all abx susceptible to cross the bbb because for example Daptomycin don't cross the bbb in normal people and it's crucial to cure neurological disorders... the problem is that all this abx work good in vitro but not in vivo, however foxy and cefoperazone looks good because two drugs have good penetration into csf. Stevia works excellent in vitro, but in vivo is diferent... the same with this abx.

If you use vodka in vitro, it will surely kill all the spirochetes, but try this in vivo and surely it will not be effective ...

Daptomycin does not cross the blood–brain barrier and does not penetrate the cerebrospinal fluid of normal individuals.

https://academic.oup.com/jac/article/55/3/283/758329

Post Edited (OriolCarol) : 4/9/2018 4:16:48 AM (GMT-6)


mpost
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   Posted 4/9/2018 4:19 AM (GMT -6)   
OriolCarol said...
Yes, you're right mpost but this study is in vitro... we should take something that make all abx susceptible to cross the bbb because for example Daptomycin don't cross the bbb in normal people and it's crucial to cure neurological disorders... the problem is that all this abx work good in vitro but not in vivo, however foxy and cefoperazone looks good because two drugs have good penetration into csf. Stevia works excellent in vitro, but in vivo is diferent... the same with this abx

Daptomycin does not cross the blood–brain barrier and does not penetrate the cerebrospinal fluid of normal individuals.

https://academic.oup.com/jac/article/55/3/283/758329


you are absolutely right, i did not suggest you should treat yourself with daptomycin, you will not find it on the market anyway, and it is insanely expensive. but this study shows many combinations of drugs that reach the brain but are better than just doxy or ceftriaxone. the table has several dozens cells.

but one thing is clear, taking one antibiotic alone , even if it crosses the bbb, will not make you well. ceftriaxone, doxy, mino, what ever... it's not enough ... that was my point. not to suggest you should treat with dapto smile

in vitro tests are very important as guidance, i mean if it only kills 15% of the bacteria in the lab what chances do you think you have for it to work in real life ? very small ....

there are some drugs that work much better in living tissue than in the lab (like for example pyrazinamide) but these are very rare and exceptional compounds. The norm is if it does not work in vitro, no way it's going to work in vivo...

OriolCarol
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Date Joined Dec 2017
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   Posted 4/9/2018 4:23 AM (GMT -6)   
I recently spoke with a well-known lyme doctor from France, who has been mentioned several times in this forum and we were discussing doxy + rifampicin. Some patient was taking this combo for 5 months, not knowing that rifampicin decreases the serum concentration of doxycycline by 40%, consequence ... he was getting worse by giant steps ... when this doctor told him to stop rifampicin, a month and a half began to notice a substantial improvement, and all thanks to that he had stop rifampicin... this combo may work well in vitro but the human body is very complex and unfortunately we know very little about how borrelia behaves in the human body.

mpost
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Date Joined Feb 2015
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   Posted 4/9/2018 4:27 AM (GMT -6)   
your example with stevia is wrong, because you give example of a drug that worked in vitro.

When doing in vitro tests , researchers are more interested of what does not work, not what works. they quickly exclude everything that does not work and for the small number of drugs that work, they begin testing in vivo.

so , if one drug works in vitro, it might work in vivo. might... so there is some chance it will. stevia is a good example of such a drug that works in vitro and not in vivo.

however if a drug DOES NOT work in vitro, chances for it to work in vivo are almost zero. that means you can use the in vitro tests to determine what to exclude from in vivo tests.

So there is no point to trial Doxy for 1 year on chronic lyme patients, because IT WILL NOT WORK, it does not work in vitro, so chances for it to work in vivo are zero. In vivo u have many more problems to take into account, tissue penetration, absorbption of orals, interaction with other chemicals/food, drug half life, etc... many more things where it can fail.

OriolCarol
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Date Joined Dec 2017
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   Posted 4/9/2018 4:27 AM (GMT -6)   
We need to open the bbb! Jajaja if we get it we can cure all lyme patients but how can we do it? sad

But you're right mpost, never take one antibiotic alone. I agree with that.

OriolCarol
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Date Joined Dec 2017
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   Posted 4/9/2018 4:35 AM (GMT -6)   
We could make all these drugs effective against borrelia in the cns, if we injected them directly into the patient's csf ... with a catheter to the medulla ... but it is not viable and the patient would probably die for a terrible herx .. .

It's really sad ... we still do not have a cure for central nervous system infections ... and the doctors do not seem to be very interested in the matter.

mpost
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Date Joined Feb 2015
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   Posted 4/9/2018 4:40 AM (GMT -6)   
OriolCarol said...
I recently spoke with a well-known lyme doctor from France, who has been mentioned several times in this forum and we were discussing doxy + rifampicin. Some patient was taking this combo for 5 months, not knowing that rifampicin decreases the serum concentration of doxycycline by 40%, consequence ... he was getting worse by giant steps ... when this doctor told him to stop rifampicin, a month and a half began to notice a substantial improvement, and all thanks to that he had stop rifampicin... this combo may work well in vitro but the human body is very complex and unfortunately we know very little about how borrelia behaves in the human body.


yeah i do not believe that, i tell you why. doxy is the standard treatment for lyme, if that were to work that jolly well alone, there will not be LLMDs around and people treating with combination antibiotics. The whole point of why this forum exists is that doxy does not work for patients that were infected years before they started treatment. But the study above shows it quite well how bad it is, so there's no point in listening to some LLMD in france that cures people with doxy. He got lucky with one patient, leaving 99 others unlucky.

It is known rifampin boosts liver production of CYP3A4 and shortens that half life of doxy. This is why higher doses of doxy or mino are preferred. You do not solve this by removing rifampin, you solve it by boosting doxy or switching to mino which is better absorbed, or by replaging rifampin with rifabutin or a sulfa drug...

OriolCarol
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Date Joined Dec 2017
Total Posts : 563
   Posted 4/9/2018 4:50 AM (GMT -6)   
I don't understant why there are lot of researchers seeing diferent results in vitro...

Eva sapi send me this pdf.

Doxycycline reduced spirochetal structures ∼90% but increased the number of round
body forms about twofold. Amoxicillin reduced spirochetal forms by ∼85%–90% and round
body forms by ∼68%, while treatment with metronidazole led to reduction of spirochetal struc￾tures by ∼90% and round body forms by ∼80%. Tigecycline and tinidazole treatment reduced
both spirochetal and round body forms by ∼80%–90%. When quantitative effects on biofilm￾like colonies were evaluated, the five antibiotics reduced formation of these colonies by only
30%–55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ∼90%.
Following treatment with the other antibiotics, viable organisms were detected in 70%–85%
of the biofilm-like colonies.

Are they using diferent tubes? smilewinkgrin

mpost
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Date Joined Feb 2015
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   Posted 4/9/2018 4:57 AM (GMT -6)   
OriolCarol said...
I don't understant why there are lot of researchers seeing diferent results in vitro...


yeah that paper is 7 years old now
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

they had no idea how to grow borrelia persisters back then, efficiently. Zhang uses a 21 day growth environment that is superior to what sapi and K. Lewis are using, and none of the chemicals they find and claim they kill all borrelia works with Zhang's culture.

Zhang is a TB researcher , he knows how to culture persistent bacteria better than other researchers because TB creates persisters too ... and he studied them extensively and found new combination treatments that achieve cure in half the time.

Post Edited (mpost) : 4/9/2018 5:05:54 AM (GMT-6)


bluelyme
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Date Joined Nov 2015
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   Posted 4/9/2018 11:59 PM (GMT -6)   

OriolCarol
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Date Joined Dec 2017
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   Posted 4/10/2018 6:07 AM (GMT -6)   
Bluelyme, do you have good results with this? I never could do it jajaja because i'm allergic to bee venom sad when i was 8 years old nearly die due to a severe reaction.
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