Trouble Tolerating Intracellular Antibiotics - Advice?

Welcome to the forum!

“ The intracellular antibiotics do works but I am not able to tolerate the recommended dosages. What advice do forum members have for me? Even sometimes 200mg per day of doxycline results in too much disability and pain. I have also tried rifampin in the past but cannot tolerate even 50mg per day.

What strategy should I utilize when taking intracellular antibiotics and can I treat this condition without reaching the necessary target dose recommended for these intracellular antibiotics?”


Have you tried taking the low dose and then after awhile increase it in small increments.
So if you can only tolerate doxy at 200 mg daily (which is half of usual dose) then start with that.
What if you tried increasing slowly - like take 225 mg of doxy per day.
After a few weeks. 250 mg.. and so on until you reach the 400 mg daily target.

Hello Girlie and Garzie,

Thank you for the replies. I have tried slowly increasing the dosage after a period of time, and I am going to give this a try again. However, if my memory serves me correctly, the slow taper up in dosage never worked for me. I just cannot get past about 200mg per day of doxy despite how gradual the climb in dosage.

But, yeah, like many on this forum. I never thought after seven years of antibiotics I would still be treating this. There has been improvement without a doubt, however of many, many ups and downs over the years.

I have had one LLMD tell me that after seven years, it cannot still be active infection and I should go off antibiotics. Of course, if I go off antibiotics I begin to experience symptoms resurgence and feel unwell. So, really I am left with no choice at this point other than to keep taking antibiotics, as I cannot experience the level of pain without them -- I'd best describe a flare in symptoms consistent with Dr. Steven Phillips calls "blebbing," which if quite uncomfortable to experience.

For me personally, there has always been a balance in treating Lyme disease, where if I dose antibiotics too high, the herxing becomes too strong and I become disabled (also becomes impossible to tolerate the accompanying psychological symptoms). However, if I dose antibiotics too low, my symptoms begin to flare, which feels similar to herxing as well (i.e, blebbing).

I am currently self-treating my illness right now. Probably similar to many on the forum, continuing to pay for a LLMD after so many years is just not feasible anymore. After throwing so much money at private doctors over the years, I've just had to resort to self-treating and utilizing the resources and knowledge of the collective minds of the internet (for which I am greatly thankful exists).

I work full-time now and used to be unable to get out of a bed for several years. My goal for treatment at this point is to obtain the last 10-20% of my health and get to a point to where I am no longer dependent upon antimicrobials.

For those interested in my treatment protocol:
- 200mg doxycycline (100mg BID because 200mg at once I cannot tolerate)
- 31.25 - 62.5mg disulfiram daily (cannot tolerate above this amount)
- 4.5mg low-dose naltrexone before bed.
- Testosterone replacement therapy for energy and diminished libido
- Low-dose Adderall to help with fatigue
- Vitamin b12 injections to help with fatigue

- Best wishes

Hello Garzie,

Thanks for the reply. I have experimented with herbals in the past, although not given them the time they deserved. I mainly cannot afford any type of setback and this is what I fear with herbals. Maybe one day I will change my mind and give them as try as you suggest.

while I have recently changed my treatment protocol to Doxycycline, previously I had been on 100mg Minocycline daily combined with low-dose Disulfiram. I had been on this protocol for over a year and it is the protocol that has me the most functional.

I used to have chemical sensitivity to the point that I couldn't even use shampoo when I showered. Since treated with antibiotics, I no longer suffer from chemical sensitivity. Because I have made progress with antibiotics, I am reluctant to change my protocol.

While herbals may offer benefit, I do not know that I can get the courage to stop my current protocol and experience and potential setback because it would just be too demoralizing for me at this point.

Probably the main problem I have with intracellular antibiotics, such as Doxcycline and Rifampin, is the extreme depression I experience when taking them. Oddly, I have not had this experience with Minocycline.

I think I am going to continue my current regimen of 200mg per day of doxy combined with low-dose disulfiram. I am going to take your advice to try to slowly increase the dose of doxycycline over a long period of time.

In terms of alternative treatment I have been considering apart from antibiotics, I may begin to experiment with bee venom therapy. I guess I am just too scared to stop antibiotics because I cannot handle a setback mentally after being at treating this for so long.

I can say that Disulfiram was a big treatment for me which really moved the needle towards better health. I could never progress beyond ~90mg per day, so I just continue to take a low dose every day.

I'll stick out my current treatment plan and then maybe reconsider going to herbals within the few months. But, yeah, Lyme Disease is one brutal infection. I still have hope of a full recovery because I read it is possible and have seen good progress (my symptoms were mainly neurological, most which have resolved).

I appreciate the advice and will keep everyone posted. For now, the game plan is still try to increase the dosage of Doxy and see where it takes me. I guess one final question I would have is, can I every beat this disease without getting up to a higher dosage of Doxycycline? I've found the low-and-slow approach to work best for me and I am hoping one day it will lead to complete symptom resolution.

While I am only on 200mg of Doxycycline, it is also being combined with Disulfiram, so while being likely undertreated with Doxy, there is another antimicrobial at work which may help. Also, when I herx so heavily on 200mg of Doxy, how can I believe that it is not working? Maybe the recovery will be slower but at least I am functional and not suffering from psychological symptoms.

Hopefully in 2-3 months I can report to the forum that I have been able to increase the doxy dosage to the recommended 400mg per day. I wish I could get there but the level of suffering and disability that accompanies it is makes it not feasible for me at this point.

As a last note, I have developed my own personal theory on recovery. Being that I was infected for 15 years untreated and being that seven years into treatment has brought about 80% recovery (many symptoms have abated which I never thought would be possible), I have developed an intuition that treatment just takes a long time to rollback all the symptoms. It is not my belief that heavier dosages of antibiotics will result in symptom resolution faster. I have gone all out with treatment to the point of disabling myself and did not progress faster during that time.

Incidentally, I have caught a glimpse of Horowitz's dapsone protocol. I cannot imagine how anyone would be able to tolerate that level of antibiotics. I actually bought some dapsone off the internet and began taking it in small amounts and began to become disabled by it. Somewhat similar to when I am on a high dosage of intracellular antibiotics.

Maybe it will be that once I get to a more stable point in life with less responsibility, I will go all out on an antibiotics protocol that disables me for a few months and see where it leaves me. In the past though, I've found it very hard to come out of treatment like this and not always found myself in much of a better place than when I began.

Time will tell and I'll provide updates for everyone. If only there was a simple answer when it comes to Lyme disease treatment. It seems like everything is so individualistic.

sounds like a plan

if its of any use - i find with some strong co-infection herbs that cause me a strong herx like reaction i find that i can only increase the dose by maybe 5-10% maximum in each step without suffering strong herx - and have to keep it at that for at least a week each time to allow it to settle

thought that it might give you some idea of how big a step in doxy might be appropriate

one thing to think about though - there is nothing wrong with using herbs alongside antibiotics
lots pf people do that - including me - in tincture form its really easy to measure out when titrating upwards also
Buhner - the most famous Lyme literate herbalist is also a proponent

Girlie and Garzie thank you for your input.

Girlie, I do think you are right that there is some correct level of balance. I know I have done best with the low-and-slow approach and suffered with hitting it hard. Maybe it is why my recovery is still going on 7-years, however I also couldn't image the repercussions to my life of being disabled for 7-years hitting it hard, yet alone if I could tolerate that level of pain mentally and physically.

While no doctor would agree to it, a thought did run through my mind years about a potential solution regarding hitting this heavy with antibiotics while being able to tolerate it. I essentially had two things that came to mind (again, I don't know how any doctor would agree to these, especially #1):

1) Use a drug to put myself into a sleep induced coma and hit heavily with the drugs that I cannot tolerate while awake.
2) Begin taking opioid pain killer to allow myself to tolerate the pain of the heavy hitting antibiotics.

Obviously, 2 seems much more plausible than 1 to me.

Garzie, I may consider adding some herbals to my antibiotics. This is something I had considered and forgotten about and now you have reminded me again. I am not one to doubt the efficacy of herbals, however there is just something about drugs that feel more proven to me. I guess this bias may stem from the fact that I had taken a lot of supplements at the start of my treatment -- not antimicrobial ones -- and just didn't see much results and/or improvement from them.

carlnpa, I think you are hitting the nail on the head. I do suffer from both Lyme disease and Bartonella. Sometimes I have trouble determining if my issues are more bart or borellia related, however my symptoms were very neurological in nature which indicates bart from my understanding. My vision was also greatly affected for a long time, mainly from after-images, static vision, and twitching eyelids, all which have resolved since treating for around 7-years. It is amazing to be able to walk around at nighttime and not have trails of light following the movement of my eyes.

I have tried Biaxin and did have good results with it, this was at least a couple years ago though. I also experience severe herxing from Bactrim, however it is more short-lived than with the other antibiotics (maybe short half-life)? In other words, while I herx very strongly from bactrim, I am able to tolerate it, unlike the other antibiotics I have been mentioning because the effects are limited to a 6-hour window it seems. When I take bactrim before bed, I will often awaken in the middle of the night, as I can feel the die off happening in my body. My roommate will sometimes awaken in the middle of the night to my moaning -- this gives you an idea of the level of pain I experience from the die off.

Another thing that confirms the bart theory is I do frequently have hairline marks on my skin, frequently upon waking and after taking intracellular antibiotics or drugs that target bart. When I first noticed these, it almost deceived me in thinking the impression marks on my arms were from the way I was sleeping against my bed sheets. One thing I also continue to suffer from is intolerance to cold weather and intolerance to drinking alcohol (irrespective of taking disulfiram). Being that I am on a low-dose of disulfiram, I have actually managed to have a drink without much negative effect. Mainly why I abstain from alcohol right now is how badly it flares my lyme disease and bartonella.

I do think you are correct in your assessment of bartonella being a big part of the problem. But, its begs my original question of how do I treat the bartonella if I cannot tolerate the antibiotics that are so effective against it?

I know rifampin is a very effective drug against bartonella, but it is just is not possible for me to get higher than 50-100mg per day. Apart from physically disabling me while taking them, psychologically these drugs also make me very depression, angry, and full of rage.

I've not taken ivermectin or the other drug you mentioned, but is definitely on my radar now that you mention it.

I think I am going to continue to try slowly increase my dosage of doxycyline beyond 200mg and keep taking the low-dose disulfiram. Maybe I'll begin to work in some bactrim and/or rifampin. I get most my antibiotics of ADC, so I'll have to re-up on Biaxin and from what I remember it was not cheap on there.

I really appreciate the support, suggestions, and help of everyone on the forum. I have followed threads on healingwell related to lyme disease every since my diagnosis, but for whatever reason never became active in discussion. I am hoping by continuing to share my story it will help someone else put together the pieces of their health puzzle and also potentially help me obtain the knowledge and understanding of tickborne illness to reach the level of recovery I am adamant on achieving.

I guess as a final question to others is has anyone tried gabapentin? I recently ordered some off ADC and I am thinking about giving it a go. My thinking it is might potentially give me pain relief that would allow me to tolerate some of these drugs that are so hard hitting for me. I've read about this risk of gabapentin and do think I will wait to be under the care of a physician to do so, because I have heard about risks regarding withdrawal. Being that I am obtaining myself over the internet, there is a chance that I could run out and would want to be under a physicians care in case that were to happen and withdrawal would occur. Can any comment on if they haver taken gabapentin and if it has been successful for their symptoms?

-futbol

methylene blue is another bart drug with promise - especially if combined with other bart drugs - particularly a macrolide - or cipro - or rifampicin - seems to ne helping me - but i also had to work up very slowly

i would be very cautious of any protocol that relies upon opiates long term - as that seems like a recipe for dependence and has the potential to mess up you life even worse than lyme/bart

the other angle - worth thinking about - esp if pharma drugs are not curative - is the immune system component

the thinking behind being that we are not simply sacks of liquid that pharma drugs diffuse into and out of - having anti-microbial effects along the way.

we are in fact a complex self repairing organism -
therefore, though its tempting to think of our bodies as inert spaces in which drugs act much like in a petri dish -
in reality drugs like abx are always working alongside and in tandem with our immune system

without a functioning immune system - no amount of antibiotics will kill every last organism
(see what happens in AIDS patients where no matter the dose of anti-fungals or abx, people die of simple infections) and as a result in lyme and bart - without a functioning immune system we would always relapse
so the other equally valid angle is to work on improving immune function.

this is not a fully bottomed out area of science - in Lyme it seems clear it is both overactive in some ways - eg auto-immunity and underactive in others - eg innate immunity towards intracellular organisms and Natural Killer cell activity - so dysregulation is perhaps the best descriptor - however, there is a lot that has been demonstrated to improve immune function and immune regulation in multiple studies

-sleep - probably the biggest single factor

-exercise - typically some form of strength training rather than aerobic (aerobic suppresses immune function for 1-2days)

-sunshine - not only via Vit D pathway but other chemicals produced in the skin in sunlight

-stress reduction and mind/body techniques - powerful - but takes effort

-many herbs both immune modulating and adaptogenic - though responses can be individual

-various peptides - both oral and iv - eg BPC-157 as presented at ILADS this year i believe

-some pharma drugs are being found to have off target immune modulating effects eg LDN, Ivermectin

-diet - things like GAPS, AIP etc seem to help to switch off auto-immune over reactions

-mental health strategies - that change how we view our world

- probably others i am missing or not aware of

i think for some people - if they are lucky - or are in the early stages of illness - it can be a case of taking a few courses of antibiotics and getting well again
for most of the rest, and from all accounts from most of the people here, who are in the chronic category, recovery seems to include a v broad approach to helping the body recover using multiple modalities all at once.

seems like you have covered the ABX only option pretty well so far - so one idea would be to do a kind of audit of your life with the question
"What am i not doing "
to find what might be the best bang for your buck in terms of time and effort to go after

there are alot of overlaps - but some areas to consider in the "audit" might be
-diet
-sleep
-stress reduction
-exercise ( i was down to 10-20% of normal function also - so i know how hard this can be - but i did start)
-immune modulation with herbs supplements or pharma

i am far from cured - but i am a long way back - and now looking for some form of work - which was unthinkable 2 years ago - so just offering ideas from the framework that i believe has helped me to progress in my recovery so far

Post Edited (Garzie) : 11/6/2021 5:08:51 AM (GMT-6)

“ I have checked ADC and can get erythromycin at a reasonable price. I am really considering trying this option in the near future -- due to curiosity from your previous comment. Do you remember how effective it was for your Bart? Did you herx a lot? Was symptom resolution quick or a gradual thing? What were some of the most noticeable symptoms you had resolve? “

For Bartonella - you will need something else than erythromycin .
Bart is not an easy fix -

The options - the fluoroquinolones or Rifampin or Rifabutin

Futbol

I had constant neck pain, even on minocycline, for years. Erythromycin cleared the neck pain in 36 hours. I did herx, it was tolerable.

The medical literature backs the use of erythromycin. I doubt it will bring you to remission, very little does, but it can push back the pathogens.

Please try the antihistamines loratadine, Benadryl, cimetidine, cetirizine. Using these may allow you to use abx or herbals.

Post Edited (carlnpa) : 11/10/2021 1:34:13 PM (GMT-7)

I know next to nothing about abx, but I thought I would throw out 2 ideas.

1. Herbs -
If you want to try incorporating herbs into your protocol, Japanese knotweed would be an excellent herb to take with abx. Buhner says the knotweed can increase the effectiveness of abx. It’s also good for both Lyme and bartonella. It protects the endothelium.

I would recommend taking it in powder form. You can get good quality powder from 1st Chinese Herbs online. Use LYME in the discount code. It’s called Japanese Bushy Knotweed Root Powder (Polygonum cuspidatum). The brands they sell are Plum Flower and Nuherb. Both good quality and reputable brands.

2. Consider Dr M’s protocols (bartonella guru)
In addition to abx, he also uses MCAS treatments and systemic proteolytic enzymes to help the patients tolerate treatment better.

The enzymes are Serrapeptase, Nattokinase, and Lumbrokinase. We just had a post about this recently. For convenience sake, the LLMD trusted sources for these are:

Serrapeptase - Nutramedix
Nattokinase - Allergy Research Group
Lumbrokinase - Canada RNA Bolouke or Allergy Research Group
For Lumbrokinase, Dr AC says Bolouke is the only effective brand she’s found for lumbro. Dr MR believes Allergy Research Brand works good, too, and is much more affordable.

futbolplayer said...

I have had one LLMD tell me that after seven years, it cannot still be active infection and I should go off antibiotics. Of course, if I go off antibiotics I begin to experience symptoms resurgence and feel unwell.

Classic attitude of many doctors. I know cases where people took pretty much all kinds of antimicrobials for way over 10 years straight and their symptoms would come back within days if they went off antibiotics. This is especially true for Bartonella which seems to be the most difficult to eradicate.

futbolplayer said...

I am currently self-treating my illness right now. Probably similar to many on the forum, continuing to pay for a LLMD after so many years is just not feasible anymore. After throwing so much money at private doctors over the years, I've just had to resort to self-treating and utilizing the resources and knowledge of the collective minds of the internet (for which I am greatly thankful exists).

Join the club. Doctors are no magicians. They want us Lymies believe they know better but where do they get their most recent Lyme related research from? Mostly PubMed, Lancet, Wiley, Elsevier and ILADS conferences. That's it. There's no magic ball and there is no one-cure-for-all. There is probably no cure at all - just ways to get into remission.

futbolplayer said...

I work full-time now and used to be unable to get out of a bed for several years. My goal for treatment at this point is to obtain the last 10-20% of my health and get to a point to where I am no longer dependent upon antimicrobials.

You might try longer pulse cycles as recommended by S.P (he mentioned some of those in his "Toxic" book). Maybe that helps. Although it might be worth checking some herbs instead. Did you check Buhner or Cowden protocols? They might provide some relief from constant antibiotic cocktails.

As a side note - I never got worse after introducing antibiotics. Doxy, Cefuroxime, Azithromycin, Sulfa drugs - they just made me feel better within days. The longer I took them the better I felt. However, no matter how long I took them, putting them away always caused a relapse.

“ Join the club. Doctors are no magicians. They want us Lymies believe they know better but where do they get their most recent Lyme related research from? Mostly PubMed, Lancet, Wiley, Elsevier and ILADS conferences. That's it. There's no magic ball and there is no one-cure-for-all. There is probably no cure at all - just ways to get into remission. “

Llmds also rely on info from their patients - what works and what doesn’t.


How do you define remission vs cure?

I’m curious - what are your thoughts - If someone is in remission for 5 years…. Or 10 years… or 15 years - are they cured? Or “just” in remission?
Will it always be lurking in the background ready to flare again?

Dr. Burrascano says it's better to take 200mg of Doxy in one dose instead of 100mg in the morning and 100mg in the evening. Same goes for 1x 400mg vs 2x 200mg. There are reports of 2x 100mg not crossing blood brain barrier and only 2x 200mg makes that happen. Obviously you need to listen to your body and do what's tolerable.