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
I don't really have anyone else to talk about