Re-infection with lyme disease

[Martial]

Hey y'all, hope everyone is doing well during these

crazy pandemic times. I wanted to make a post to ask

for some help on a recent situation of mine.


I had joined these forums many years ago when I first

dealt with a serious chronic lyme disease and co

infection illness which had taken me quite some time

and doctor visits/ research before I was diagnosed

and figured out what was going on for me.


I spent a lot of times on these forums and learned

valuable things and enjoyed the company of many

really cool people here. Which I am very thankful and

grateful for.


I fully recovered from all my issues many years ago at

the age of 25 I was 85 percent normal again and then

at 26 I was 100 percent again. I initially got very ill at

the age of 22, was finally diagnosed at 23 and was

on my way to doing a lot better at 24 after finally

getting proper treatment.



It took me quite some time to recover 100 percent

because I was doing the buhner herbal treatment of

Lyme disease on my own after my llmd went out of

network and got too expensive. This is because I

wasn't properly dosing the herbs enough but later

learned to do proper dosing and resolved residual

things there after.


Recently at the age or 31 I unfortunately had the

experience of being recently re infected with lyme

disease and have a much more mild case of it

compared to the nightmare experience which was the

first time getting sick with all the neuro cognitive

issues included.


Right now I just have generalized lyme symptoms that

are not really that disabling like before but I wanted to

hop on here and get advice from others for good

treatments I could try and add to what I'm doing.

Right now I am focused on doing the buhner herbs

again for this new infection but I'm curious to know

opinions on other things I can also try, as well as

people's opinions on antibiotics.


I am trying to avoid antibiotics as much as possible

because I've used and found treatments that work

very well for Lyme disease without the same side

effects and issues that the antibiotics can produce. My

biggest concern with the antibiotic use is actually its

link to raising your risk of auto immune conditions like

RA.

I would not want to treat my infection with antibiotics

right now and then raise the risk of developing some

kind of auto immune illnesses later from my antibiotic

usage treating the Lyme.


But on the flipside some doctors state that antibiotics

are the only proven and effective treatment in curing

Lyme disease and that there are certain long term

issues that can happen if you avoid treatment from the

infection doing more damage to the body. So it feels

like a damned if I do, and damned if I don't situation.


Although personally that's mainstream CDC standard

which isn't that thorough and is set to prevent people

seeking treatments that don't work as a substitute.

Antibiotics are very effective for Lyme and have a

great success rate of curing it. I just don't want to take

the other risks that are associated with the antibiotics

if I can just treat the Lyme disease without it.


For people that have persistent symptoms after

antibuitic treatment I think herbs work extremely well

without adding over all toxicity to the system with

Long term multiple iv antibiotics usage some suggest

for chronic lyme. But I'm someone who had never

used antibiotics whatsoever at the moment lol.

 

[Judee]

But I'm someone who had never

used antibiotics whatsoever at the moment lol.

Wow, I was going to mention the Will Weigman protocol.

This Functional Medicine doctor mentions his protocol saying, "One of the reasons I particularly like this protocol is that it requires far fewer antibiotics than are often prescribed for tick borne infections. This gives your system, especially your gut, more time to recover between doses, causing less long-term damage while remaining effective."

His protocol can be found on this blog about 5 posts down: https://www.lymeneteurope.org/forum/viewtopic.php?t=4891&start=120

However, since you have never used antibiotics, I'm hesitant to recommend using them now. You might just want to stick to Buhner's recommendations.

 

[5vforest]

The Will Weigman protocol strikes me as really, really wacky.

Also, that LymeNetEurope thread has a bunch of posts from what I think may be sockpuppet accounts. That is, accounts that were newly-registered, only in order to post on that thread to say how wonderful of a protocol it is.

There are plenty of credentialed, licensed doctors who publish books and advice that you can follow instead of a random guy on the internet.

Martial, I am sorry you are sick again and I will try to circle back to your post to see if there's any advice I can provide. I just felt some urgency in posting that disclaimer re: the links above.

 

[Judee]

The Will Weigman protocol strikes me as really, really wacky.

Also, that LymeNetEurope thread has a bunch of posts from what I think may be sockpuppet accounts. That is, accounts that were newly-registered, only in order to post on that thread to say how wonderful of a protocol it is.

First off, if you read the full thread some of them do not agree with him and there are others who tried a similar approach who said it did not work for them as they hoped so I don't think it's a bunch of yes-men he hired to back up his ideas.

I mean, who does that anyway, unless they're trying to promote a product that they can profit off of? As far as I can find, he isn't selling anything anywhere.

Some people will even have a website that you have to subscribe to just to find out what their protocol is. (I mentioned one the other night on one of the FMT threads.) I have found no proof that he is doing anything like that either. He's just putting ideas out there much like we do here.

Also as I referenced that website where that Functional medicine doctor said, "I have had the most success treating long-standing tick borne illnesses with this protocol..." I'm not sure if she's written a book yet though.

I also found the abx on the protocol useful and not really out of line with what some of the LLMD's and researchers like Dr Eva Sapi are recommending. (He quotes studies though admittedly some of the links are broken now but I was still able to find the studies online and confirm them.)

Plus, I was actually able to eventually go off of abx because of his protocol and the rotation he recommended. I could not do that before. Everytime I tried to go off of them, I got very ill.

In addition, the antibiotics he mentions also line up with Ken Lassesen's survey of patient's use of abx. The one's Will recommends are high on the list people with ME/CFS said have helped them the most.

I do think there are people who prey on the sick. I absolutely agreed with you when you posted this a couple weeks back:

There are some people who have had positive experiences with them, but my opinion is that they are despicable scams that take money from desperate patients who are seeking a cure.

But as I said, I don't see where WW is profiting off of people's illness. Anyway, that's all I want to say about it.

 

[Martial]

The Will Weigman protocol strikes me as really, really wacky.

Also, that LymeNetEurope thread has a bunch of posts from what I think may be sockpuppet accounts. That is, accounts that were newly-registered, only in order to post on that thread to say how wonderful of a protocol it is.

There are plenty of credentialed, licensed doctors who publish books and advice that you can follow instead of a random guy on the internet.

Martial, I am sorry you are sick again and I will try to circle back to your post to see if there's any advice I can provide. I just felt some urgency in posting that disclaimer re: the links above.

I appreciate your words and trying to watch out for me, I think the link that was shared by Judee is something I find quite unique but I'm not really trying to use antibiotics. I don't think the person sharing the protocol is trying to scam people though since they aren't directly making money off the treatment. I know many other scam artists that do try and take advantage of sick people and give questionable treatments and I stay as far away as possible from all that haha

 

[Martial]

Wow, I was going to mention the Will Weigman protocol.

This Functional Medicine doctor mentions his protocol saying, "One of the reasons I particularly like this protocol is that it requires far fewer antibiotics than are often prescribed for tick borne infections. This gives your system, especially your gut, more time to recover between doses, causing less long-term damage while remaining effective."

His protocol can be found on this blog about 5 posts down: https://www.lymeneteurope.org/forum/viewtopic.php?t=4891&start=120

However, since you have never used antibiotics, I'm hesitant to recommend using them now. You might just want to stick to Buhner's recommendations.

Thank you for sharing this! If I were to ever use antibiotics I think I would try to use it In a similar fashion as this! To really decrease the over all burden on my gut and system from the antibiotics and be more targeted with the application of it. Too many llmds push for major dosing of long term IV style antibiotics and I think that can put someone into a really toxic overload situation.

Although I will admit quite a few people get well that way too. Yet some others don't fully recover with it or notice diminished returns and then you got to deal with all the dangerous side effects and complications antibiotics produce. For me I was just weighing whether or not to take the cdc standard antibiotic protocol of doxycline for a couple months alongside my buhner herbs.

But again I'd rather avoid it as much as possible because of the inherent raised risks of other issues from antibiotic usage.

 

[5vforest]

I’m not saying it’s any sort of scam, just that there are a lot of weirdos on the internet and I would be very very cautious taking medical advice from them

 

[Martial]

I’m not saying it’s any sort of scam, just that there are a lot of weirdos on the internet and I would be very very cautious taking medical advice from them

Okay I gotcha, I definitely agree it'd important to use common sense and discernment. I only have used treatments that have a lot of evidence and successful cases attached. As per the case with the Buhner protocol for example. Where as there were other lyme treatments I came across suggested online that were downright dangerous before such as IV hydrogen peroxide. Yikes haha.

 

[Judee]

Too many llmds push for major dosing of long term IV style antibiotics and I think that can put someone into a really toxic overload situation.

I agree with this.

 

[Tammy]

Just my two cents for what it's worth. No way in hell would I do the long term antibiotics.

 

[5vforest]

Hey Martial,

I re-read your original post. It sounds like you already have a good handle on how to treat, and what has worked for you in the past.

Do you know how you got re-infected? Another tick bite?

Honestly, I do not know of many people who feel that they truly recovered to 100%.

Since you already did so once, I would just say to do whatever you did last time and be patient

If you're wondering what's new in the last half-decade, the answer is not much. You might want to look into Disulfiram, but I don't think the cost/benefit would make sense for you, based on what you've written.

If you can find the support of a doctor who you trust and is affordable (or in-network), I think that would be a good idea, if only for them to be on-hand should something go awry during your treatment.

 

[Davsey27]

I have heard anecdotes of those with lyme seeing improvements with mold avoidance

 

[Dufresne]

I would argue that a whole lot has happened in Lyme disease over the last half-decade. CDC/establishment "recognition" for chronic Lyme, novel treatments, complimentary strategies, etc.

I get die off from taking persister herbs and drugs, and not much else. Primarily Dapsone, Bactrim, and garlic. Garlic is the most overlooked herb in this condition and probably the best for hitting things outside the cell. The following study from Johns Hopkins supports this.

https://www.jhsph.edu/news/news-rel...ces-kill-persister-lyme-disease-bacteria.html

Getting inside the cell may be trickier, and of course biofilm is another issue to consider. Buhner says his herbs should get inside the cell but I believe there's some sort of immune dysfunction in some of us whereby this aspect of immunity is especially compromised. I've found I can force this with Bactrim, but then I get something closer to severe ME and it takes months to recover.

I believe there's an order of operations to follow and that this is highly individual, hence the difficulty in treating. It's not just Lyme.

Incidentally most LLMD's will tell you that re-infection doesn't really happen; you just have a flare up of what you managed to beat back in the past. Dr Horowitz says 99% of those who've chronic Lyme will relapse without some ongoing vigilance. @Martial seeing as you got on top of it in the past with natural treatments there's likely a very good chance you can do it again. Why introduce drugs if you didn't have to the last time? In my experience it's beneficial to address co-infections, toxins, environment, and trauma (in the broadest sense of the word).

 

[gbells]

Hey y'all, hope everyone is doing well during these

crazy pandemic times. I wanted to make a post to ask

for some help on a recent situation of mine.


I had joined these forums many years ago when I first

dealt with a serious chronic lyme disease and co

infection illness which had taken me quite some time

and doctor visits/ research before I was diagnosed

and figured out what was going on for me.


I spent a lot of times on these forums and learned

valuable things and enjoyed the company of many

really cool people here. Which I am very thankful and

grateful for.


I fully recovered from all my issues many years ago at

the age of 25 I was 85 percent normal again and then

at 26 I was 100 percent again. I initially got very ill at

the age of 22, was finally diagnosed at 23 and was

on my way to doing a lot better at 24 after finally

getting proper treatment.



It took me quite some time to recover 100 percent

because I was doing the buhner herbal treatment of

Lyme disease on my own after my llmd went out of

network and got too expensive. This is because I

wasn't properly dosing the herbs enough but later

learned to do proper dosing and resolved residual

things there after.


Recently at the age or 31 I unfortunately had the

experience of being recently re infected with lyme

disease and have a much more mild case of it

compared to the nightmare experience which was the

first time getting sick with all the neuro cognitive

issues included.


Right now I just have generalized lyme symptoms that

are not really that disabling like before but I wanted to

hop on here and get advice from others for good

treatments I could try and add to what I'm doing.

Right now I am focused on doing the buhner herbs

again for this new infection but I'm curious to know

opinions on other things I can also try, as well as

people's opinions on antibiotics.


I am trying to avoid antibiotics as much as possible

because I've used and found treatments that work

very well for Lyme disease without the same side

effects and issues that the antibiotics can produce. My

biggest concern with the antibiotic use is actually its

link to raising your risk of auto immune conditions like

RA.

I would not want to treat my infection with antibiotics

right now and then raise the risk of developing some

kind of auto immune illnesses later from my antibiotic

usage treating the Lyme.


But on the flipside some doctors state that antibiotics

are the only proven and effective treatment in curing

Lyme disease and that there are certain long term

issues that can happen if you avoid treatment from the

infection doing more damage to the body. So it feels

like a damned if I do, and damned if I don't situation.


Although personally that's mainstream CDC standard

which isn't that thorough and is set to prevent people

seeking treatments that don't work as a substitute.

Antibiotics are very effective for Lyme and have a

great success rate of curing it. I just don't want to take

the other risks that are associated with the antibiotics

if I can just treat the Lyme disease without it.


For people that have persistent symptoms after

antibuitic treatment I think herbs work extremely well

without adding over all toxicity to the system with

Long term multiple iv antibiotics usage some suggest

for chronic lyme. But I'm someone who had never

used antibiotics whatsoever at the moment lol.

Which borrelia type do you have, bugdofi or afzeli? I'd read that some post lyme patients have recovered using bee sting therapy because the venom helps break down a substance produced by borrelia.

https://mosaicscience.com/story/how-bee-sting-saved-my-life-poison-medicine/

Borrelia Afzeli is an apoptosis inhibitor so that complicates treatment.

 

[Tiger Lily 813]

What are your symptoms/co infections?
I like Klinghardt's protocols in general which are all published on his website. I unfortunately would struggle to tolerate them right now but wish I could I'm trying the Microbe Formulas products now and like them a lot so far.

 

[Martial]

Hey Martial,

I re-read your original post. It sounds like you already have a good handle on how to treat, and what has worked for you in the past.

Do you know how you got re-infected? Another tick bite?

Honestly, I do not know of many people who feel that they truly recovered to 100%.

Since you already did so once, I would just say to do whatever you did last time and be patient

If you're wondering what's new in the last half-decade, the answer is not much. You might want to look into Disulfiram, but I don't think the cost/benefit would make sense for you, based on what you've written.

If you can find the support of a doctor who you trust and is affordable (or in-network), I think that would be a good idea, if only for them to be on-hand should something go awry during your treatment.

I got re infected by a new tick bite in New Jersey over the summer. I felt better than ever before after I recovered from my lyme disease and had no long term issues or symptoms after. It was a really lengthy process of recovery due to me not properly treating it the way that you should with the herbs for a long stretch of time though. I am already on the same treatments as before I just wondered if antibiotics would be important since it feels a newer stage of infection in which they might be more effective. Plus nervous about long term lyme complications like joint, heart. Brain and nerve damage. If the herbs and everything I'm doing will treat it completely like last time and avoid all those problems then I'm okay. I just don't want to risk my chances of other diseases from the antibiotics usage if I don't have to.

 

[Martial]

I have heard anecdotes of those with lyme seeing improvements with mold avoidance

Yes this can be a big help for some lyme patients. I feel for certain individuals they are a lot more susceptible to mold problems due to certain genetics that make it harder for them to clear out mycotoxins from their system and etc. None the less I try and practice good mold avoidance. It's hard and expensive to do all the testing in your home or apartment though.

 

[Martial]

I would argue that a whole lot has happened in Lyme disease over the last half-decade. CDC/establishment "recognition" for chronic Lyme, novel treatments, complimentary strategies, etc.

I get die off from taking persister herbs and drugs, and not much else. Primarily Dapsone, Bactrim, and garlic. Garlic is the most overlooked herb in this condition and probably the best for hitting things outside the cell. The following study from Johns Hopkins supports this.

https://www.jhsph.edu/news/news-rel...ces-kill-persister-lyme-disease-bacteria.html

Getting inside the cell may be trickier, and of course biofilm is another issue to consider. Buhner says his herbs should get inside the cell but I believe there's some sort of immune dysfunction in some of us whereby this aspect of immunity is especially compromised. I've found I can force this with Bactrim, but then I get something closer to severe ME and it takes months to recover.

I believe there's an order of operations to follow and that this is highly individual, hence the difficulty in treating. It's not just Lyme.

Incidentally most LLMD's will tell you that re-infection doesn't really happen; you just have a flare up of what you managed to beat back in the past. Dr Horowitz says 99% of those who've chronic Lyme will relapse without some ongoing vigilance. @Martial seeing as you got on top of it in the past with natural treatments there's likely a very good chance you can do it again. Why introduce drugs if you didn't have to the last time? In my experience it's beneficial to address co-infections, toxins, environment, and trauma (in the broadest sense of the word).

Interesting thanks so much for the suggestions. I'll have to try that with the garlic. I find the buhner herbs to be extremely effective and they worked great for me before when I had for more issues going on. I don't believe that someone cannot get reinfected though. Your body only produces antibodies to the strain of borrelia that is already in your system. If you get a new bite you don't have any kind of protection against that.

I definitely think a relapse of old Lyme is plenty possible as well but the thing is for me I've kept an extremely healthy lifestyle with no stress and maintenance low dose herbs to keep my system strong from old infection. But I moved recently to a very high endemic area for Lyme disease in New Jersey and believe I had a new bite very recently while here which triggered these new symptoms. I think the natural treatments will work well and I definitely make sure to take care of other compounding issues as you mentiin.

Co infections, toxicity, environment toxins, trauma, diet, lifestyle etc. It's what I had to pay attention to a lot to recover the first time. My only concern since this Is a newer infection is not taking the antibiotics and developing some kind of damage from the Lyme disease as a result. Yes the herbs helped me fully recover last time and I did well wjth it. But I didn't want to keep rolling the dice on damage with lyme again unless I can comfortably know the herbs will be enough to avoid that. Because on the flip side the antibiotics themselves can put you at greater risk of developing other diseases from destroying the gut and its link to certain auto immune triggers for whatever other reasons.

 

[Martial]

Which borrelia type do you have, bugdofi or afzeli? I'd read that some post lyme patients have recovered using bee sting therapy because the venom helps break down a substance produced by borrelia.

https://mosaicscience.com/story/how-bee-sting-saved-my-life-poison-medicine/

Borrelia Afzeli is an apoptosis inhibitor so that complicates treatment.

Interesting I don't know the strain but I got the new infection in New Jersey in the north east part of the United States. Bee venom therapy was always something that interested me in the past but I have no idea where to get that done. The buhner herbs work very well for all the co infections and strains of Lyme but doing another treatment like bee venom therapy on top could be helpful provided I don't die of anaphylaxis lol

 

[Martial]

What are your symptoms/co infections?
I like Klinghardt's protocols in general which are all published on his website. I unfortunately would struggle to tolerate them right now but wish I could I'm trying the Microbe Formulas products now and like them a lot so far.

Klinghardt has some great suggestions and stuff for treatment. His suggestion of using resistance rlexefcise when well enough to help oxygenate tissue in the body and raise core temperate to kill the Lyme really helped me a lot in my initial recovery. The buhner herbs have been the best herbal treatment of anything I've tried before. I also did the nutramedix tinctures of Samento , banderal, houttuynia, and Pinella, as well as the dr Jernigan formulas for de tox . Your formulas sound really interesting thouhh I've never tried them before so I'll have a look into it.

My symptoms right now are just borrelia symptoms, some tendon pains, fatigue, poor sleep, muscle soreness, muscle twitching and just random odd symptoms here and there. But nowhere near as bad or disabling as when I had all my neuro cognitive issues when I was first sick wirh Lyme and Bart.