Lyme Treatment: What I’m Doing

supps and pillsNow that I’ve let people know that I’m better, some are starting to ask me: What are you doing? Who are you seeing?

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!

Vegan Cuts January Beauty Box

Here is what came in my Vegan Cuts January Box:

NuStyle organic detangler– Perfect timing. I was just thinking I needed something like this! Winter weather and too many hats have made my hair a little tangled at times. The smell is good and it works well at detangling, as intended.

Ofra Cosmetics–lipstick. This is probably one of the 1st vegan cuts things I don’t like that much. It had a funny smell to it, which isn’t that great with lipstick, and it’s very much like a stain and not creamy or glossy enough. It was hard for me to spread on.

Primal Pit Paste–I gave this to my husband for when he needs a bit of deodorant in a pinch. Someone must have told Vegan Cuts that I stink because I’ve gotten a lot of deodorant from them over the past 9 months or so of boxes. Hope I smell better now! I’m using one of their little sample bars on my trip this week and it’s quite handy.

Dew Puff– I was also¬† just thinking I needed something like this for my legs since winter weather is taking it’s toll. It’s made of konjac. Upon use, it just seemed like a regular sponge, not very exfoliating, it’s actually quite soft. Interesting material.

Biao Beauty–night cream–I tried this and I love the smell of anything rosewater. It was a nice cream, not to thick. Unfortunately my skin freaked out a little (bumps) and I cant tell if it was from this. One of the dangers of trying a few new things at once.

Better Botanicals–scrub and cleanser. I tried the scrub. It was a thick scrub that scrubbed well, but I wasn’t too fond of the scent.

Disclaimer: I paid for this box with my own money (well actually it was a gift from my husband) and was not paid to review it.

Overall, not the best box ever but some good finds. And always fun to explore and unwrap my surprises each month. A lot of it is the fun of anticipation.

Valentine’s Day is coming up so I thought I’d shamelessly self-promote some of my new Etsy Items: glasses cases, chocolate bar gift bags, heart mini-totes, magnets, playsets and more. Use coupon code VALENTINE14 for 20% off your order over $10. A great deal!

whale glasses case eat me choc wrapper 2heart bag front view goat beets

Go to Time Travel Tabby Cat to see more!

Strengthening and detoxing

Disclaimer: I am not a medical professional! None of what I write is intended as medical advice.

I wanted to share some of what I am doing lately. I have been feeling a lot better, but I have lingering hip pain. Some of it is due to degeneration in my sacrum, but some is due to hypermobility and sore muscles and tendons. So with my doctors, I decided physical therapy was a good option.

I also have been feeling better overall, but was dealing with some deconditioning due to being bed-bound and so sick for so long. So physical therapy has helped me work on specific muscles to strengthen. I think this is important before I get into more intense activities. I eventually hope to be able to do more activities (yoga, kayaking, skiing, etc), but I just know if I go at it too fast, I’ll be laid up unable to walk much and I don’t want to be there so I have to go slow.

Another thing I added into my routine was a infrared sauna. I got one second hand from another Lyme patient. She was very generous. It is the type you sit in and then zip up around you. These are good for small apartments. I have been trying to use it 2-3 times a week. I wish I could do it daily but it requires me sitting around and sometimes if I have energy I just wanna do things not sit. It’s a good problem, I know.

sauna area

I have always felt really good after infrared saunas. Prior to this one, I’ve used wooden ones in health clubs. The difference between infrared saunas and regular saunas is that with the infrared sauna you sweat more and it heats the body quicker than the air so you can stay in longer. The goal is the raise the body core temperature. Raising your body temperature can help fight illness. Since I’ve felt better, my body temperature has been up into the 98’s instead of 96 or 97.

It is supposed to detoxify you as well. There are different pathways to detoxify: lungs, liver, kidney, colon, skin. Sauna should help you detoxify through the skin. I don’t have any evidence that I am less toxic afterwards, and I definitely would never omit my liver detoxification program, but I will say the more you can do the better and if it makes you feel good, that’s a bonus!

Speaking of detoxing through the skin, I also use a dry skin brush to help my lymph system move out the gunk. It’s something easy I can do for a few minutes while I wait for the hot water in my shower to warm up (oh the fun of living in a cold climate). It exfoliates the skin and moves the lymph. You always want to brush towards the heart, as a generalization, or follow the lines on the chart below. You tube also has some good videos.

So that’s my routine. What do you do to strengthen? To detox?