Late Stage, Herbal Route

Hello everyone,

I've been ill for 8 years with Lyme, only discovered that Lyme is the answer to my plethora of symptoms about a year ago. I have completed 9 months of the Cowden protocol, but am no better whatsoever. I've just begun the Byron White A-L Complex to specifically target Borrelia. An electro dermal scan showed inactive Bart/Babs/EBV. It also showed some mold in my lungs. Currently am taking 1/2 drop A-L in the morning and again in the evening , working up by 1/2 drop every three days as I am hypersensitive. Already the small dose seems to be aggravating my lungs (always clearing throat, feel the need to cough).

My symptoms include 24/7 headache and sore throat, chills, fatigue, aches and pains, muscle tension, etc. Constantly in some level pain. Have all of the symptoms associated with POTS, MCAS, CCI, and TMJ-D. Have been told I have a connective tissue disorder (but I think it's just Lyme affecting my collagen). Cortisol and other hormones are low, likely due to the stress my body is under.

I'm taking a large collection of supportive supplements, including thyroid/adrenal support, vitamin/minerals, inflammatory support, and immune support.

Have any of you who went years without treating Lyme improved/gone into remission through herbal treatments? Can any of you direct me to stories of people who have? I'm feeling discouraged. I'm 20 and have been dealing with all of this since I was 12. It took 40+ doctors to figure it out, and a lot of damage has been done in my body.

Any and all input is appreciated.

alsmith said...
Hello everyone,

I've been ill for 8 years with Lyme, only discovered that Lyme is the answer to my plethora of symptoms about a year ago. I have completed 9 months of the Cowden protocol, but am no better whatsoever. I've just begun the Byron White A-L Complex to specifically target Borrelia. An electro dermal scan showed inactive Bart/Babs/EBV. It also showed some mold in my lungs. Currently am taking 1/2 drop A-L in the morning and again in the evening , working up by 1/2 drop every three days as I am hypersensitive. Already the small dose seems to be aggravating my lungs (always clearing throat, feel the need to cough).

My symptoms include 24/7 headache and sore throat, chills, fatigue, aches and pains, muscle tension, etc. Constantly in some level pain. Have all of the symptoms associated with POTS, MCAS, CCI, and TMJ-D. Have been told I have a connective tissue disorder (but I think it's just Lyme affecting my collagen). Cortisol and other hormones are low, likely due to the stress my body is under.

I'm taking a large collection of supportive supplements, including thyroid/adrenal support, vitamin/minerals, inflammatory support, and immune support.

Have any of you who went years without treating Lyme improved/gone into remission through herbal treatments? Can any of you direct me to stories of people who have? I'm feeling discouraged. I'm 20 and have been dealing with all of this since I was 12. It took 40+ doctors to figure it out, and a lot of damage has been done in my body.

Any and all input is appreciated.

One of our Mods used herbs to treat her infections.
I will pull up one of her posts - and you can a summary of what she took - in the bottom of her posts.

**** see next post *****

well i used herbs and bee venom mostly... try some andrographis and/or allicin from zhang hits the myco/bart purdy good but u need 2 modalities to get thru its double cell wall...

Yes, I used herbal treatment for infections. I consider myself to be reliably 85% of my pre-tick-bite state (or better) for the past four years. Started with six months of Byron White, then moved on to about two years of a low dose of Buhner's protocols. I used one rife treatment for Babesia (not much, I know, but I herxed brutally, so I count it) and a DesBio series kit for Bartonella (again herxed brutally). Otherwise my treatment has focused on support for my nervous system, HPA axis, microbiome, digestive system, and immune system.

What turned things around for me in terms of actually resolving symptoms and feeling better was reading Toxic by Neil Nathan, and through that, figuring out ways to address dysautonomia and MCAS effectively.

If you have a connective tissue disorder, like Ehlers-Danlos or hypermobility spectrum disorder, then some of what you describe - MCAS, POTS, CCI, etc. - might need to be managed for life. Those are inherited disorders, so while tick-borne disease might trigger them to be more noticeable and definitely worsen them, some people do have those symptoms for life even without tick-borne disease being part of the picture. That said, management is possible! And addressing tick-borne infections, mold, and other issues certainly will make a difference for you if those infections are part of your history.

bluelyme said...
well i used herbs and bee venom mostly... try some andrographis and/or allicin from zhang hits the myco/bart purdy good but u need 2 modalities to get thru its double cell wall...

Taking Andrographis currently at 400mg daily, but no obvious herx. Mostly just taking that one for immune support at this point. There is Allicin in the Byron White A-L Complex -- hopefully it'll do some good. Thanks for the recomendations.

saraeli said...
Yes, I used herbal treatment for infections. I consider myself to be reliably 85% of my pre-tick-bite state (or better) for the past four years. Started with six months of Byron White, then moved on to about two years of a low dose of Buhner's protocols. I used one rife treatment for Babesia (not much, I know, but I herxed brutally, so I count it) and a DesBio series kit for Bartonella (again herxed brutally). Otherwise my treatment has focused on support for my nervous system, HPA axis, microbiome, digestive system, and immune system.

What turned things around for me in terms of actually resolving symptoms and feeling better was reading Toxic by Neil Nathan, and through that, figuring out ways to address dysautonomia and MCAS effectively.

If you have a connective tissue disorder, like Ehlers-Danlos or hypermobility spectrum disorder, then some of what you describe - MCAS, POTS, CCI, etc. - might need to be managed for life. Those are inherited disorders, so while tick-borne disease might trigger them to be more noticeable and definitely worsen them, some people do have those symptoms for life even without tick-borne disease being part of the picture. That said, management is possible! And addressing tick-borne infections, mold, and other issues certainly will make a difference for you if those infections are part of your history.

So, to clarify what you said, Lyme does NOT cause MCAS/POTS but triggers/worsens them? It's just odd to me that my POTS and MCAS symptoms appeared not long after the other Lyme symptoms appeared (headache/joint issues). I was healthy and well before everything was triggered at the age of 12. . . have always thought that Lyme itself caused those conditions to appear.

Thanks, Garzie. Is it a common occurrence for people who’ve been ill with Lyme & co’s for a very long time to take years to recover or see substantial improvement?

I’ve read stories of people who saw improvement taking herbs after a couple of weeks/months, but in my case that’s certainly not happening. That’s why it’s hard to know if I just need to stick with something for an extended period of time or try something else.

Sorry, I see why what I said was unclear!

I meant that Ehlers-Danlos and hypermobility spectrum disorder are inherited disorders. Some people with those inherited connective tissue disorders have POTS and MCAS as features of those disorders, and therefore might need to treat them for life because those connective tissue disorders are lifelong disorders. But POTS and MCAS can be caused by lots of other things - Lyme, COVID, and even chronic stress. If you didn't have POTS and MCAS prior to developing tick-borne disease, then it seems possible for you to resolve them or at least manage them very effectively long-term. Treating Lyme is a good idea!

My close friend has Ehlers-Danlos and developed POTS and MCAS around age 40. No tick-borne disease involved. As far as I know, there has not been any research done about whether someone in her situation can resolve POTS and MCAS permanently because they are features of a genetic disorder that allegedly can't be "switched off" once they have been "switched on." Her specialists have advised her that she will need to manage them in an ongoing way. In her case, the hormonal changes of perimenopause triggered the various conditions associated with her genetic connective tissue disorder.

Two other friends with inherited connective tissue disorders first developed symptoms around puberty, again because of hormonal shifts triggering the condition to manifest. They both have POTS and MCAS as well, again with no tick-borne disease, just as features of the connective tissue disorders. One of them has a child with hypermobility but no other symptoms yet, and her specialists say to expect them around age 11 or 12 (puberty).

As for CCI, I don't know if it can resolve from tick-borne disease treatment alone. Even if infections directly caused CCI by degrading collagen, it might require surgery to repair. I know that sounds dismal, but sometimes CCI surgery is life-changing, and people feel much better immediately.

Do you have specialists who can help with each of these things? I know it's tough to find an LLMD who has real experience with every single thing. Some LLMDs attribute everything to infections and take a very simplistic view of the body, i.e. antibiotics + detox = all symptoms resolve. Unfortunately some of us need a lot more nuance! That's why Neil Nathan was so influential to me: his patients were all the folks told by their LLMDs that they were too sensitive or too complicated to treat. And I'm sure it's frustrating trying to explain everything going on with you to each specialist you see!

I don't mean to say that a person with a connective tissue disorder and tick-borne infections can't improve their condition by treating the tick-borne infections. Treating tick-borne infections is always a good idea!

That sounds like a very reasonable hope! I'm glad that you have discovered that tick-borne infections are part of the picture and can address them now.

The herbal protocols are a legitimate option. Personally, I know just as many people who have healed from herbal treatment as from pharmaceutical treatment. People do see partial results from both, and find no improvement from both as well, so it's not difficult to find individuals who will tell you that one route or the other is unhelpful.

Have you browsed through Bill Rawls's website, or read Stephen Buhner's book Healing Lyme? They might help you feel more confident about herbal antimicrobial treatment. Most of Marty Ross's antimicrobial protocols include herbal options as well.

rawlsmd.com
treatlyme.net

Thanks so all who recommended I read Dr. Neil Nathan's book 'Toxic'. Wow. It's been incredibly helpful and I'm learning a lot. I don't tolerate the regular doses of binders, and per his recommendation I've been taking 1/8 of a tsp 2x a day, just yesterday moved up to 1/4tsp 2x day. Tolerating that smaller dose much better. Continuing with the Byron White A-L Complex at 1/2 drop mid morning and 1 drop before bed. 1 drop is causing aches in my arms/hands. Going to pay closer attention to how I'm tolerating things.

Also, stopping glutathione supplementation and moving to focus on NAC and Alpha Lipoic Acid which helps body make gluthatione. The glutathione helps my mental symptoms of sadness/depression, but Dr. Nathan doesn't recommend taking it long-term due to potential negative results. Going to see if I can get the same mental relief with NAC/ALP.

As for the likely mold issue (aspergillus) in my lungs, still unsure how to specifically target that. Dr. Nathan's book talks about IV phosphatidylcholine, which I'm going to resume taking orally again. For now, focusing on taking binders daily to keep what I kill from re-absorbing.

Thanks, saraeli. I have a bottle of TUDCA that I haven't tried yet. Hopefully I will be able to get on that soon.

Thanks Scroggins.

I actually got the Toxic book and finished reading it a few days ago. I found it very helpful as I am one of those hyper-sensitive patients and have had a lot of trouble tolerating regular doses of binders/herbs. Per his books’ recommendation I’m now taking binders again at very low doses and tolerating them well.

I have a tendency to feel significantly worse when I take a lot of “Lyme killers” at full doses, and Toxic said that if you feel terrible while taking something it’s because there is too much die-off and your body can’t process it fast enough. So I’m working on incorporating the binders while taking the Byron White A-L Complex to target Lyme bacteria specifically.

Also getting nasal ozone treatment done on the 23rd to hopefully help target potential mycoplasma pn. bacteria and mold in lungs.

Update:

Have hit another wall. Resting HR at night is elevated entire night. Intense fatigue and PEM, mental/emotional symptoms, worsened chronic symptoms (flu-like symptoms, aches, bad sore throat, worsened headache, etc.), etc. Blood pressure feels wonky. Hormones out of whack (delayed monthly cycle has been going on for three months). Still on 1/2 drop A-L Complex mid-morning and 1/2 drop before bed. Taking 1/4 tsp charcoal/bentonite binder mid-afternoon and 1/8 tsp middle of night.

Glutathione was helping keep the mental clouds away but I stopped it due to the book Toxic's caution against taking it often. I started ALA and took that with NAC (which I've been taking for 6+ months with no issues) and I think it may be triggering the intense fatigue. Stopping the ALA and will wait a few days before removing anything else from regimen.