Asking for support: Chronic Lyme - no antibiotics, science backup

Dear all,

First of all, thank you for creating and keeping this forum alive.
It's the 1st time I'm posting but unfortunately I'm not new to Lyme disease.
I've read through really interesting conversations, exchange of experience and knowledge here and am deeply grateful to find people who "speak the same language". It has been a very lonely journey...

I had the intention to introduce a bit my story but, to be honest, at the moment I am lacking the necessary energy. I will try to do it with better quality on a different moment and for now I'll stick to the essential info to introduce my request.

I'm in Europe, in a country where it's believed that Lyme is exotic (it isn't) and there is huge misunderstanding, disinformation and lack of knowledge about the disease. To add to this, I was diagnosed in a different country than where I live, still in Europe, but that leaves me with no doctor wanting to take full responsibility of my process.

Anyway, I was "luckily" diagnosed almost 3 years ago. I knew nothing about Lyme and because it took 3 months since I had started having scary, debilitating symptoms, I did what the doctor said, before doing any research.

Took 20 days of antibiotics, with no recommendation or knowledge about detoxing. It got worse, it was a nightmare to go through the antibiotics.
After that, seeing that it did not solve the issue, I started investigating to decide how to move forth.

Long story short, I've decided to stay on the natural path since then (I hope I will provide more details on another post soon). All in all, my health has been improving with this approach and I feel I'm nearly there. I will soon focus on a treatment with wild teasel and sauna for 1 month (also might record my experience here, if I manage).

I am aware that antibiotics do good for many people, and this post doesn't intend to question that.

But since I have made this decision for myself, I need to stand up for it in front of the doctors, who discredit how serious I am about wishing to cure from Lyme. They keep advising on antibiotics (I remind you, with very little knowledge even about this approach) and I have been refusing, since the first time I took them. So they actually believe I am undermining my healing process. I respect that and can't tell exactly what would happen if I would take a longer course of antibiotics. But I also wish the doctors respect my choice and understand that I didn't take it lightly.

So, what I am looking for here is research gathering pointing in the direction of antibiotics not being proven to solve chronic Lyme (I hope this doesn't sound too harsh to those who are on that path).

If you came across any article, study, conversation based on studies, that support this perspective, I would deeply appreciate if you could share it here. I am going to meet the doctors again in less than 2 weeks and wish to be prepared like I haven't been before. If needed, I will print and underline relevant parts, because I always feel like a loony when I try to articulate my reasoning when I'm confronted with the question, why do I refuse the antibiotics.

Here are a few examples in the line of what I'm looking for:

The New England Journal of Medicine, "Randomized Trial of Longer-Term Therapy for Symptoms Attributed to Lyme Disease" - https://www.nejm.org/doi/full/10.1056/NEJMoa1505425

National Institute of Allergy and Infectious Diseases, "Chronic Lyme Disease" - https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease

John Hopkins, "Essential oils from garlic, herbs kill persistent Lyme disease bacteria" - https://hub.jhu.edu/2018/12/04/lyme-disease-treatment-essential-oils/

Thank you for any contribution to this request and conversation

Wishing you health and peace.

WT

Welcome to the forum!

I'm sorry your medical team has been so frustrating! I'm curious why you need to see these doctors for Lyme-related treatment even though they don't know much about it. If you have made a lot of progress on your own, then why do they need to be in agreement or even involved with your treatment? If you have a plan (teasel and sauna, for now) then what are you seeking from your doctors? Are you worried that you are not able to self-treat effectively?

If they have no background with herbal or generally non-pharmaceutical treatment, then they cannot advise you, and are likely to recommend against your plans, simply because they don't have the right training. I doubt that you will convince them, if they are anything like doctors in the US. I understand that you want them to stop pushing you toward treatment you aren't open to, but if they are not professionally acquainted with holistic Lyme treatment, herbal medicine, etc. then it would be unethical for them to condone any type of treatment that they are not familiar with. Can you see an herbalist, homeopath, naturopath, or a specialist from another country?

Garzie makes a good point that even when people are comfortable with pharmaceutical treatment, the specific antibiotics used matter a lot, as well as the order in which they are used, the right combination, etc. Supportive supplements are usually needed as well. A doctor without Lyme experience cannot navigate this properly. Each case is different, so I would not trust my treatment to a doctor whose training just consisted of a few articles.

Stephen Buhner, Marty Ross, Better Health Guy, and Bill Rawls all have advice for herbal treatment online, with some degree of scientific citations. Better Health Guy has numerous links to articles, although they're not necessarily published in the mainstream journals regular doctors would find most convincing.

Because herbs are natural substances that aren't patented, there's not much funding for research about them, so unfortunately you're much more likely to find mainstream scientific studies about pharmaceuticals (which can be patented and therefore make companies money).

Here's one of Rawls's articles about a Hopkins study, with links to the original study. https://rawlsmd.com/health-articles/real-talk-new-johns-hopkins-study-7-herbs-can-kill-lyme-bacteria

Ross provides full citations for his full treatment protocol in drop-down menus on his website: https://www.treatlyme.net/lyme-disease-treatment-guidelines

You already found the Hopkins work on essential oils, which is very cool.

I don't mean to sound discouraging. It's really nice to have doctors with whom you can be open, and whom you can trust! I definitely understand why you want to make that happen, if possible. I wish I had better advice about how to make that happen, but in my experience, most doctors are not open to learning whole new areas of medicine and treatment approaches from their patients.

Many people on this forum treat with combinations of approaches, and many use herbs and other non-pharma treatments as their basis of treatment. We do get better. While I have issues with pharma in general, I also have an extensive history of medication allergies and dangerous side effects, including to two major families of antibiotics. Pharmaceutical treatment would not have been an option for me, even if I had wanted to go that route. None of the LLMDs I have seen have found that troubling or surprising, and they had other ideas for me right away, because with this illness, everyone is different.

You probably noticed from other posts on this site that even our Lyme-literate medical doctors (LLMDs) all have their own approaches. Some are flexible about patient preferences or changing course when thing are not working for someone, and others are more rigid in their protocols. Some eschew all pharma, whereas others use mostly pharma. Some focus on antimicrobial treatment as the primary focus, and others focus equally or moreso on systemic healing. Even in the US, where we have comparatively many Lyme specialists, there's no consensus on treatment. I have seen six LLMDs, and they all have different approaches - Byron White Formulas, nutrient IVs, Buhner protocol, addressing mycotoxins, gut health, extensive genetic testing, peptides, mountains of supplements, immune system regulation, DNRS limbic system retraining, dietary changes, treating mast cell activation syndrome, acupuncture, infrared light therapy, and many more. They all have their favorite things they insist people do, and they all have negative opinions of approaches that others favor. To some degree, many of us end up navigating this for ourselves and using doctors as consultants. Some people trust their LLMDs implicitly, and that's great, but that has not served me well with this highly specialized and individualized condition.

Good luck!

Blue - maybe this page?

http://www.lymeinfo.net/alt.html