I can’t divulge publically the name of the person I am seeing for her privacy and mine. However I will say it’s an Naturopath (ND) and she is trained by ILADS (International Lyme and Associate Diseases Society). Those aspects were important to me.
Sadly there is not one treatment plan that will work for everyone with Lyme. And not everyone with Lyme Disease just has the Lyme bacteria. Most patients have other issues that make it harder to get better such as coinfections. Common coinfections with lyme are Bartonella, Babesia, and mycroplasma as well as viruses like Epstein Barr and HHV 6.
I’ve been reading Dr Horowitz’s book Why Can’t I Get Better and he gives the metaphor of Lyme patients having 16 nails in their foot. Each nail represents a condition or coinfection. If you treat Lyme, that takes out one nail in the foot but there are still 15 other nails.
My “nails” have been viral, bacterial, mold sensitivity, adrenal issues, thyroid, hormones, arthritis and MTHFR.
My first doctor who diagnosed me really only understood bacterial and viral issues. He treated me with very strong doses of antivirals and antibacterials but I was getting worse. Finally I noticed my pain levels were better on the protocol than off, but there were so many things worse on the protocol. I had no energy and couldn’t think. I’d forget the name of the town I was from sometimes. I had relentless nausea. I wanted to kill the lyme and bacterias but it was just making me miserable.
I did a lot of research on my own. That first doctor gave me the gift of the proper Lyme diagnosis, which eluded me for many years even after seeing countless top doctors and naturopaths. This doctor believed me and didn’t think it was “all in my head” and to “just go meditate” as other doctors said. He listened and tried. However he just wasn’t up on the latest lyme research. I knew after my support group helped me get educated with articles, conferences, and more, that I needed someone else. Some Lymies go it alone, but I wanted a doctor to guide me.
I moved and found a new doctor in the area, however I still have to drive a ways to see her. She really helped me identify the main things I needed to focus on. I had also attended a conference on Lyme and used a lot of that information to figure out what was plaguing me and what to test.
What I added to my treatment was:
- Treatment for Bartonella. I had bad nerve pain, burning, and other symptoms of Bartonella (there are many). And numbness and tingling in my arms and legs, and bad foot pain. I still do have numbness on my face. Rifampin has helped with this (it’s an antibiotic). It also lessens my pain.
- Byron White herbs. I take A-L complex, which is for Lyme but if you look up the herbs that are in it, they are also antiviral and help for other bacterias too. When I first started it, on only one drop, I had a “herx” (which is a temporary worsening of symptoms) very badly directly after taking it. My feet and legs would hurt so much. Now I am up to 22 drops. Once I got past 15 or so I started to really feel better. But it took 5 months to slowly work up.
- Cholesthyramine powder. It’s for mold sensitivity. I was exposed to a moldy house. Luckily I was able to get out, however now I am very very sensitive to mold. I was tested for the HLA mold gene, and it means you can’t process the biotoxin that binds to mold. People without this sensitivity can detox it out better. Once I was able to take 2 packets a day I felt major improvements, particularly in energy and brain fog.
- MTHFR treatment. MTHFR is hard to explain. It is not a shorthand for a swear word. It’s a genetic condition that some people have that, again, prevents them from detoxing in the same way. The good thing is there is an easy fix. You have to take methylated B-12 and methylfolate. This is definitely genetic and it’s likely people in my family have it. However even though it’s just a matter of a vitamin, some people still don’t want to learn more or treat. It’s a condition that contributes to a lot of chronic conditions and mental health issues, miscarriages, and Alzheimer’s. People who have only one copy may not have issues but combined with lyme it can prevent one getting better if you don’t treat.
- Hormones, endocrine, and thyroid treatments. I call this “fallout of lyme”. Lyme trashed my adrenals, thyroid and other organs that lyme destroys. So I had to get those adjusted with help from herbs and supplements. I mention this because it made a big difference for me in pain levels and energy.
These are things to consider. If your doctor hasn’t checked MTHFR, why not ask? I wish I hadn’t waited until my hormone issues were more obvious (like incessant periods) in order to check them, because not even my doctor anticipated that adjusting them would help my hip pain. I think being persistent is a good quality in a patient and a doctor. They can’t read your mind, and there’s so many tests to run and only so much money and time so you have to think of your worst symptoms and do your own research and help the doc out a little. If you doctor is unwilling, move on. If I had listened to certain doctors I saw I’d be doing nothing but pain management, and I’d rather address the cause of the pain not just mask it.
This does not mean you should DIY your Lyme treatment to do exactly as I do. For example I take DHEA which is fine to take if you are low in it, but isn’t good to take if you are already high in it. You need proper testing and not just assume it’s low or high.
A lot of Lymies are ready to give up at times. It’s frustrating, expensive and a lot of work to get proper treatment. But I want people to know that I am making improvements and so can you. Please don’t give up!