Potential Lyme, what are ABX risks?

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Hi all,

Been dealing with my CFS/CFS-like condition for about 4-6 months now. One of the health professionals I'm working with thinks I have Lyme after doing Armin/Igenex testing. I'm aware that these tests are of dubious validity and I'd dismiss these outright if it weren't for the fact that I think I was bitten by a tick last year (for reasons other than my current symptoms).

Under the hypothetical assumption that the *Lyme diagnosis is false*, how do you perceive the risks of taking antibiotics for 3-6 weeks?

Is it foolish to pursue such a drastic regimen considering that my symptoms began fairly recently? (reason to delay)

It's also worth considering that Lyme treatment is rather time-sensitive (reason to not delay)

All opinions appreciated. Thanks for reading.
 

Judee

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I'd dismiss these outright if it weren't for the fact that I think I was bitten by a tick last year
There seems to be a window of opportunity right after being bitten where you can just take the antibiotics short-term like you are thinking and having them work. I am thinking you might be past that window. I would find some Lyme groups on FB to confirm that.

If you do have a doctor willing to work with you on abx and you want to use the shortest time possible on them, I am having some success with this guy's protocol. https://www.lymeneteurope.org/forum/viewtopic.php?t=4891&start=120

He gives the basics in about the 4th post down but if you want more details, I would go back to page one of that forum and read through all 13 pages if you can. Here's also some comments from an MD that does like his protocol: https://harborhealth.info/?page_id=366

What he is saying for the types of abx to use matches what another member here has found in his surveys of ME/CFS patients who have used abx with success: https://cfsremission.com/2016/07/23/first-survey-results-on-antibiotics/

This is his background on the remissions he has been able to achieve. He's used mostly abx, and later added antibiotic herbals and some probiotics. https://cfsremission.com/my-story/

One more thing, I have felt better as well on some of the natural Lyme treatments though maybe not quite as much as on the abx. It's been kinda hard to tell which is working better so I am using both.
Here is some of his protocol info: http://buhnerhealinglyme.com/
Cat's claw, resveratrol, and andrographis help get me through some of the non-abx day rough spots.

For all the things I've tried for my ME/CFS with the exception of oxymatrine, selenium, and licorice, working on possible Lyme co-infections has been the most positive results I've had in over 40 years of illness. It's still slow going but this time something definitely feels different/better.
 
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There seems to be a window of opportunity right after being bitten where you can just take the antibiotics short-term like you are thinking and having them work. I am thinking you might be past that window. I would find some Lyme groups on FB to confirm that.

If you do have a doctor willing to work with you on abx and you want to use the shortest time possible on them, I am having some success with this guy's protocol. https://www.lymeneteurope.org/forum/viewtopic.php?t=4891&start=120

He gives the basics in about the 4th post down but if you want more details, I would go back to page one of that forum and read through all 13 pages if you can. Here's also some comments from an MD that does like his protocol: https://harborhealth.info/?page_id=366

What he is saying for the types of abx to use matches what another member here has found in his surveys of ME/CFS patients who have used abx with success: https://cfsremission.com/2016/07/23/first-survey-results-on-antibiotics/

This is his background on the remissions he has been able to achieve. He's used mostly abx, and later added antibiotic herbals and some probiotics. https://cfsremission.com/my-story/

One more thing, I have felt better as well on some of the natural Lyme treatments though maybe not quite as much as on the abx. It's been kinda hard to tell which is working better so I am using both.
Here is some of his protocol info: http://buhnerhealinglyme.com/
Cat's claw, resveratrol, and andrographis help get me through some of the non-abx day rough spots.

For all the things I've tried for my ME/CFS with the exception of oxymatrine, selenium, and licorice, working on possible Lyme co-infections has been the most positive results I've had in over 40 years of illness. It's still slow going but this time something definitely feels different/better.
Thanks for this Judee. I'll see if my functional practitioner will get on board with this regimen.

If I do an ABX protocol for 3-6 weeks without a prominent herx or without a significant improvement in my condition, would that be good reason to believe that Lyme isn't the culprit in my condition?
 

Markus83

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If I do an ABX protocol for 3-6 weeks without a prominent herx or without a significant improvement in my condition, would that be good reason to believe that Lyme isn't the culprit in my condition?
I would say yes. But you need to take the right medication (I would take doxycycline or minocycline) in the right dosage.
 
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If Ken Lassesen's theory of gut dysbiosis is behind your symptoms though, you could respond positively to the abx without having lyme, but then relapse once you stop the abx
 
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If Ken Lassesen's theory of gut dysbiosis is behind your symptoms though, you could respond positively to the abx without having lyme, but then relapse once you stop the abx
I understand that it's never 100%, but improvement on abx would be another significant data point nonetheless. I did however do a week of azithromycin recently which basically cured me of IBS-C (this has happened once before, the anti-IBS-C effects wore off within a year). I didn't feel any betteror worse on the azithro with respect to my CFS (possibly Lyme) symptoms, which makes me think that reducing dysbiosis wouldn't improve my symptoms. At any rate, it's definitely worth having in mind when I run this little experiment, so I appreciate the input the very much
 

Judee

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If I do an ABX protocol for 3-6 weeks without a prominent herx or without a significant improvement in my condition, would that be good reason to believe that Lyme isn't the culprit in my condition?
I wouldn't necessarily say "significant improvement" right away if this is Lyme. I am learning that Lyme is a tough one to beat.

However, you should see some improvement that indicates you are going in the right direction. Although, since you have only had ME/CFS for less than a year, I suppose you could still see major improvement. Patients have a better chance of improving within the first couple of years of getting the disease.

For me it's been 40 years so that may be why there is more healing that needs to happen.

I would take doxycycline or minocycline
In that thread I included above, Will Wiegman quotes one of Dr. Eva Sapi's studies where she discusses the way Doxy creates 3 times as many spirochetes as it kills by allowing them to excrete up to 12 (average of 3) primitive egg sacs as they die.

So if your doctor is willing, I would ask for the Minocycline instead of the Doxycycline. I actually have used both in the last 4 months and the doxy does seem to make me feel worse--not a herx, I don't think. Now that I know that, I probably won't use it anymore.

The minocycline it great though. It helps me to sleep very deeply. I've never had a lot of insomnia unlike so many ME/CFS patients. I didn't really think I had sleep issues but now that I am sleeping even deeper, I wonder.

Plus, the Tinadazole was the first one I started on even before I found that protocol and that one is really potent. With that one, I knew there was a difference this time. Maybe show your doctor that page from the other MD. ??
 
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Dufresne

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Thanks for this Judee. I'll see if my functional practitioner will get on board with this regimen.

If I do an ABX protocol for 3-6 weeks without a prominent herx or without a significant improvement in my condition, would that be good reason to believe that Lyme isn't the culprit in my condition?
My Lyme only really responds to persister drugs and herbs. As such doxy and mino have done nothing for me. That said, I don't think there's much of a risk with the probe you're talking about.

However I really think herbs are the answer for chronic Lyme, as far as the bacteria itself goes. The proven safety of garlic, cumin, etc is obvious. The problem is chronically ill people almost always have a whole lot more wrong with them and this is why they tend not to see improvement for "Lyme" with just an antimicrobial approach.
 
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Hi tedstark, did your abx lead to an improvement? I've also been diagnosed with Lyme using igenex lab "alternative criteria" as well as somewhat confirming results from other labs, and at first I rejected the diagnosis. I didn't want to get drawn into the rabbit hole of a fringe theory practiced by not-quite doctors.

However, after starting minocycline + azithromycin, I believe I experienced a Herxheimer reaction, so my thinking is coming around.
 
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Hi tedstark, did your abx lead to an improvement? I've also been diagnosed with Lyme using igenex lab "alternative criteria" as well as somewhat confirming results from other labs, and at first I rejected the diagnosis. I didn't want to get drawn into the rabbit hole of a fringe theory practiced by not-quite doctors.

However, after starting minocycline + azithromycin, I believe I experienced a Herxheimer reaction, so my thinking is coming around.
I never pursued it a serious diagnosis, so I didn't try antibiotics. The labs used (Igenex and especially Armin Labs, based on that European investigative documentary that's often talked about) don't seem to use the most reassuring methods as far as I can tell. My issue with using an antibiotic reaction as a diagnostic indicator is that many CFS-/Lyme-type disorders seem to be related to gut health, and antibiotics do indeed have a severe impact on the gut. May loop back around to the Lyme/co-infection hypothesis once I've exhausted other ones.