Help with treatment options

Hey folks, new here. So i know that this is nothing anyone can do for me but you all seem like a good community with a variety of experiences and I'm a tad stuck on my options so talk it through with me if ya don't mind :) I have suspected lyme with confirmed babesia, ehrlichia, and positive mycoplasma. Symptoms: chest pains, muscle pains, joint pains, peripheral sensory neuropathy, dermatitis, constipation, POTS, rare episodic derealization, occasional sharp stabbing pains in my head, stiff neck, occasional testicular pain, abdominal pain etc. I was only diagnosed about a month ago despite being sick for two years. I think like many people I had the experience where doctors were extremely condescending, told me it was in my head, prescribed me antidepressants, didn't answer my questions etc. I have a very very VERY lowly view of doctors in general and feel utterly betrayed by contemporary medicine at this point. Granted I'm also a sixth year biochem student who has spent the last two of them largely laying around researching inflammatory disease and microbes. So in that sense I've become a complete control freak in my healing process and very critical of medical practice. I feel many lymies regardless of their background can empathize with me on this :P I have to understand just about everything as best as I can as I don't feel I can trust a doctor to understand it or act in my best interest.

So anyways, this disease has virtually destroyed my career path and was essentially the nail in the coffin for pursuing any sort of normal western lifestyle. It's a blessing honestly and I've had this coming a long time, but essentially I'm wrapping up my remaining classes and my fiance and I are pursuing off-grid communities to reconnect with ourselves and establish some sort of meaningful lifestyle. So out of the blue i find the energy to show up at a party one day, and what do you know, another lymie who suggests I read Stephen Buhners book on Lyme. I have now ready MANY of Stephen Buhners books. I am in love with him. I connect with Buhners work in a way I have not connected ever before. His words speak true to my reality. His incorporation of Gaian and energetic perspectives with the hard science of infectious diseases sings to the deepest joys of my soul. A disease nerd AND a visionary! I'm almost glad I got this illness. Now I don't agree with every little thing he says, but out of all this disappointment, finally an opinion I can respect. And one that goes above and beyond anything I could have asked for. I can open his book and understand the protocol in just about as much depth as anyone can ask for. He gives me tools to find my own answers for the things he doesn't offer. I feel that when I read his books I can truly make an informed decision every step of the way. And best of all my interest in sustainable living and disease pathology is now perfectly matched with an interest in sustainable medicine. One that I can practice on myself. In this sense my disease can become a part of my passion and self growth rather than a purely reducing factor in my life.

So the dilemma... I of course want to get better by any reasonable means. I found an LLMD with very high ratings and my parents are flying me out of state once a month for visits. One thing I've learned about Lyme is you have to know the tools in your toolbox and be open minded whether that be herbs or pharmaceuticals or whatever. So I've got these wonderful books on herbs, but what I don't have is any formal training or clinical experience with antibiotic drugs. Here in my naivety I'm thinking I'm going to meet with a doc, get her opinion, learn some things and make an informed decision on how to structure my game plan. Wrong. Same crap with every doc. She (fortunately) takes a very detailed account of my symptoms and asks me a lot of questions. She then decides to place me on minocycline, zithromax, tinidazole, sida acuta, and artemisinin for three months and once she makes that decision on her own she's got her eyes on the door handle politely rushing me to spit out whatever last minute questions I have so she can get on to her next patient. So of course I have a bunch of unanswered questions/concerns about side effects, expectations, strategy, etc and little to no reason to think that this treatment plan is going to help me other than her word that she has "good results". What about biofilms? She didn't even throw tinidazole into the mix until I asked her what she planned to do about round bodies, forget that biofilms are fundamental to recalcitrance of chronic infections. So I see that she's trying to tackle all the planktonic forms of the infections at once and I get that there's some strategy to that, but it's a lot of drugs, very aggressive and doesn't address some of the serious issues. I know that the tetracycline, macrolide, cyst buster combo is pretty common though but there is no real data on it to help me be better informed. I'm kind of dependent on her sharing her experience. And what about the fact that minocycline turns your thyroid black and can cause thyroid cancer? I get all antibiotics have side effects but my gut doesn't sit right with that one. I'm worried I can't handle all these antibiotics at once, I'm worried about the side effects of minocycline, and I'm worried that if she doesn't address these morphological variants i'm going to relapse and get worse than before. That has already happened with inappropriate use of herbal antibiotics.

So I'm not really sure what to do. I keep thinking "what if she really knows what she's doing and this could help". Then I remember all the doctors I've dealt with in the past and all the horror stories of cancer patients getting strung along by doctors giving them aggressive treatment as the whole thing becomes a blur until they leave them a butchered mess and say "there's nothing else we can do". And I wonder "is this any different?" I just don't trust the western healing paradigm. I've learned too much biochemistry, I've read too much on disease, and I've been challenged to question the validity of medical perspective too many times. I used to believe contemporary medicine was innovative my whole life but now it looks very crude and dogmatic. Not to say I don' think there's a time and place for technological medicine, but I distrust the current mentality in practice pretty much across the board and I can't help but question whether these LLMDs are true innovators or extensions of that same flawed paradigm. And I'm not here to say these people are idiots and don't know what they're doing. Maybe they're really pulling some positive results from this, but I don't know how I'm supposed to integrate antibiotics into my treatment plan on blind faith. And more importantly Buhners work empowers me. My own research empowers me. Online discussion empowers me. Being a mere patient again would remove any quality of meaning that is left in my life. I am, as all can choose to be, a healer and as such I have to be involved and growing from this process otherwise there is nothing left for me on the other end of treatment. No job, no hobbies etc. This is it, getting better. That's my life. That is all that's left for me on this journey. So I don't want to reject antibiotics and my doctors protocol, but I have to proceed in the way that makes most sense to me and I'm not sure where her protocol falls. So... thoughts? Would I be a fool to reject such an opportunity? Is the three drug regimen pretty helpful for most? I see a lot saying they will never go back to antibiotics, but I assume most of the ones who got better don't post on lyme forums much anymore :P I don't really know what my question is honestly. I just need insight from people who care to talk about this stuff I don't really have anyone else to talk about it with.

Yes me too. I have been on and off several forums. Lymeneteurope was very angry :P Reddit not so helpful. This one seems to be very active and productive so far. Thanks for your comment :)

Hi again, Psilociraptor - thanks for your well- thought out, and detailed post.

You won't be the first one to question antibiotic treatment...many here are treating herbally.

Buhner's protocols are discussed often on this forum...and even those of us using antibiotics...often add in some of the herbs he recommends.

Take your time, research...and make a decision based on what you think is right.

Read posts, ask questions...and feel free to vent here.

Great replies by everyone.

I have lyme and have not been taking any meds/herbs for 2 weeks now. It is very hard not to be scared that any minute lyme will be back wrecking my life. I work at staying stress free and positive.

I started on antibiotics for about 6 weeks and that was difficult for me. It had been over 20 years since I had ever taken an antibiotic. I am very in tune with my body and what the antibiotics were doing ran contrary to my thinking - I was having to do this for nausea and that for diarrhea. I don't like taking something and then having to take something else because the first something gave me a problem. I hung in there but researched and researched.

I started a pro and con list and searched the net and put some protocols in the pro column and some in the con column. Buhner's ended up winning. But I had such lyme brain I could not read his books and I had to underline practically every line. I was a mess and then I found this forum.

A mod here told me I could do it and I believed her because she believed in me. I made a lot of mistakes but I could always come here and figure out my mistakes.

I was afraid and sick at the same time. I knew I was not a doctor. I had a little more than average experience with herbs, but I was not an herbalist. I knew it would be easier to have someone else tell me what to do and how to do it, but I also knew I would question their reasoning.

The biggest thing I had going for me was detoxing. My lifestyle was organic foods and I was already detoxing many methods daily. I consequently never had a herx when I started the herbs. But, I was extremely gentle introducing herbs to my body.

I went it alone. It was tough to be sick and be my own doctor. An hour after taking my herbs I would wonder if I had taken them.

Now here I am. It has been a journey. My journey. Trail and Error journey. I am my own guinea pig journey. But "I" have come such a long way. Pride in that, lots of pride because it was not quick or easy.

Just paying it back to others now.

You will find your way. Just remember that you can always change the road you're on.

Hi Psilociraptor,
Welcome to our community! I'm so glad you found us.

I too can relate all too well with your experiences with doctors and the feelings of not wanting to use pharma abx to treat these infections. I'm an abx failure after a horrid experience, but believe most of it was due to having treatment before it was understood just how important detoxing and supportive therapies were, back in 2007. I finally healed the first time after living with these infections for 40 years with herbs only. Then I had too much stress in my life, my adrenals crashed taking my thyroid with it and was reinfected at that time, about 1 & 1/2 - 2 years after healing the first time.

I would echo most of everyone's opinion on what direction you should take. Do what's right for you. If it's only abx at this time, then do that; if it's a combination of pharma abx and herbs, then do that; if it's herbs only, then use herbs only. There is no set way, or even better way to treat these infections. We just have to do what we believe is best for our bodies and what works for our particular situation.

I would very much encourage you to learn about detoxing and detox lots, and to learn about the supportive therapies and incorporate what you need of those to help your body heal. This is what I believe to be a really good resource for detoxing ideas, as well as the information in the "New to Lyme? Start here!" thread: www.tiredoflyme.com/detox-methods.html

Since you've been sick for about two years, please understand that this is a journey back to wellness, not a race to conquer the bugs. It will take time, but healing is possible.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum.

b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​

www.tiredoflyme.com/the-herxheimer-reaction.html

www.tiredoflyme.com/detox-methods.html

This site has awesome information on it - I love both of these articles above. I hope you find them helpful.

Here is a discussion we had once about detoxing -- www.healingwell.com/community/default.aspx?f=30&m=3602759

Geeze guys you don't let up! I'm not used to discussions moving this quickly :P Haha love it

sebreg - Two recommendations for that blog and I've never heard of it. Definitely on my list of reading materials for this week now :) Thanks. I am mostly through Horowitz book. It is definitely helpful but I do have some mixed feelings and it doesn't go terribly deep into the territory of antibiotic treatment. I will give those chapters a read again now that I have some context for my own treatment though. And you are right, that is a wonderful quote. One of the many reasons I love Buhner is because he doesn't just hand you a list of drugs but a whole new tool for carving your own path.

Traveler - "Since you've been sick for about two years, please understand that this is a journey back to wellness, not a race to conquer the bugs. It will take time, but healing is possible. " I agree with this sentiment entirely. I've been dealing with mental health problems since 6th grade and as I come to see physical illness for what it is more and more they start to look a lot more the same. Not things that can be cured with pills and aggressive therapies. But journeys that require humility, a lot of listening to the world, and a lot of feeling your way back to the light.

I appreciate the link to the detox info. Admittedly as I told Mustard Seed, that is something that I am not well informed on. So I will start there for sure. I do agree with all the other points about supporting bodily functions and that is one aspect of herbal medicine i really do enjoy. They are quite sophisticated in these regards. My LLMD does acknowledge the importance and recommends some things, but I do feel that I have more antibiotics than supportive therapy. Also, do you mind sharing what your bad experience with abx is? That is certainly concerning

LOL! We most definitely can be a pain to keep up with if you aren't careful!

We can help you find what works best for you with detoxing and supportive therapies as well. And it has to be up to you, as it's all what works for you - and not everything works for everyone.

Take something as simple as the Epsom Salt/peroxide detox baths - that's one that helps many people, yet I can't use them as they move too many toxins too fast for my body to detox them out before I start herxing badly. But, they are a good option and very effective, so I opt for the foot soaks is all.

Those lists for detoxing are to guide you as to what others have found pretty useful in detoxing, so start off slow, as you don't want to over detox and be in a position where you are moving more toxins than your body can process out quickly enough. So we suggest that people only introduce a new detoxing routine once every 3 - 5 days so that we can evaluated how well it's working for us before adding in something else.

You should also follow this when adding in anything new so that you can gauge your body's response to the new product - and only one new thing in those 3 - 5 days so that if you respond badly, you not only know what it was, but you can stop the one thing and recover, rather than having to back track, stop several things and work them all in again to discover which one caused the reaction.

As for supportive therapies, you should also be supporting your liver in it's detoxing - most use milk thistle (if you are allergic to rag weed, you may not be able to use this) as it not only helps the liver detox, but helps it to heal as well.

Keep asking questions!! And we'll keep giving you ideas and leads!!

sebreg - Good to hear about the reactions from the enzymes. I was always afraid they wouldn't be very systemic, but that's a good indication. As for the minocycline - "rare". However a black thyroid requires invasive procedures for diagnosis so it's suspected to be seriously underreported. In mouse studies they pretty much all turn black on very high doses, but can also be entirely prevented with vitamin C. So that does make me feel a bit more comfortable in that regards and I've been giving it a bit more consideration. Finally picked up my pills so it's here whenever i decide.

Yeah I saw that study which is interesting. Definitely something to keep in mind though i know nothing about daptomycin. I'd personally experiment with herbs far before I experimented with new pharm combinations. And yeah, i know Buhner says that but that is one of those things I actually disagree with strongly. I think it's a very broad and assuming statement. Some herbs can be dangerous on their own, i see no reason antibiotics which come with their own side effects couldn't potentiate that. It doesn't mean I would never combine them, but I try to limit how many things I'm putting in my body at once.

Traveler - definitely using milk thistle and probably dan shen as well! Thanks for that! That's interesting. I've never heard of a peroxide bath. That's the thing about detox. Not a lot of science out there and especially with so many of these being relatively new ideas I'm never sure what to make of most of them, but I'll definitely be giving that link a look and studying up now that you gave me some starting places. Since i've decided to postpone treatment at least 15 days I suppose this would be a good period to start working on my bodily functions. I suppose that starts with giving up this kratom... :(

Mustard Seed - To Buhners credit he actually did mention caution with skullcap in the Anti-Virals book! I think... in one of them for sure... I've read his works pretty extensively for this reason as he mentions a couple times that due to space limitations he can not repeat a lot of things he has already talked about in previous books. I wish he did one book that was just materia medica, but it is what it is. You really have to own them all to get his full perspective.

But, as i said above, i do agree that his lax sentiment on this issue of herbs+antibiotics is somewhat reckless. Skullcap itself has been implicated in idiosyncratic liver injury. I understand where he's coming from, but herbs aren't necessarily safe either and i really do idolize the guys work otherwise. Anyways, very glad you posted this wonderful information. I don't think that's something I would have had the patience to research. Like you said, I'm not sure how relevant it would be. My doc wants me on tinidazole and artemisinin already which is contraindicated above. Though if i follow through with her treatment I will probably not take that many herbs aside from milk thistle and sida acuta until I'm off the abx. I don't even feel comfortable taking too many herbs at once without abx.

Only taking it now because I'm not taking anything else currently. Any other particular reason? Or do you just mean from the additive effects on the liver?

I personally liked the Hansa center protocol. It is not as well known as some of the others but it worked well with my situation.

Katebirch said...
I personally liked the Hansa center protocol. It is not as well known as some of the others but it worked well with my situation.

From hansa center? Seriously, much much thanks to you all. I've been researching health for years and lyme for at least a few months and I'm getting many recommendations I have not yet heard. I will look over all of them thoroughly as time permits Much love

yes- I have gotten some flak on this forum before for discussing the hansa center and their protocol- I am not quite sure why. They treat a ton of lyme patients and have very good success rates. I personally went there and got treated by their doctors. You can call them to discuss this if you want to go that route. As for at home- basically the core of the at home protocol is borellogen and anti tox. These are two of their medicines. You can buy them on their website store. the borellogen treats the bacteria and the anti tox treats the ammonia which is a by product of the lyme. The head dr there is Dr Jernigan. If you google Dr Jernigan he has a blog as well as many videos and such discussing their treatments and also discussing ammonia. There is also a book called healing lyme by dr Jernigan which talks aobut their at home treatment protocol. You can do the borellogen and anti tox for 6-9months, three droppers of each a day if you want the basic protocol.