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?

BOOK REVIEW: Why Can’t I Get Better?

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I was provided a copy of Why Can’t I Get Better, by Dr Richard Horowitz to review by St Martin’s Press. (Thank you!) This book is big buzz in the Lyme community right now. I first saw Dr Horowitz on Katie Couric where he outlined some of his points, prior to the book release. He is spot on in his thinking that it’s not just Lyme Disease, or even the co-infections (commonly Bartonella, Babesia, Mycroplasma, and more) but many conditions that go together with Lyme Disease that cause someone to feel so sick.

Dr Horowitz calls this sickness MSIDS (Multiple Systemic Infectious Disease Syndrome) due to all the components that must be looked at for lyme patients. If a patient is not feeling better after treatment for the lyme, then it’s time to look into other conditions such as: co-infections, heavy metals, hormones, adrenals, sleep conditions, and many more. This book rang so true for me. The Lyme treatment was not enough, I had to treat other conditions to feel better.

There is an excellent description of the major co-infections that go along with Lyme, and their treatments. There are herbal and antibiotic choices provided. Sprinkled throughout the chapters there are stories about patients, which helps provide a case study to examine at how these illnesses play out, including the varying types of severity and the types of stumbling blocks that can arise in treatment. These anecdotes also make the book much more readable for a layperson, and there is some humor infused into those sections.

There is a very good questionnaire that new patients should consider reading and filling out, or people with autoimmune conditions or other “mysterious” or hard-to-treat conditions should really look into. There’s another chart on the different conditions that go with Lyme (metals, etc) and testing and treatments that go with this. (This would be very helpful for a patient to bring into a doctor’s appointment!)

Reading the adrenal section was like reading about myself! My first doctor did not treat my adrenals properly and this held up my recovery for awhile. He really needs to read a copy of this book. In fact all doctors really should, especially those treating autoimmune conditions and fibromyalgia patients. Dr Horowitz does a great job of explaining how lyme can cause an autoimmune response and cause doctors to think there is an autoimmune condition. it’s so important to know if it’s Lyme since that is much more curable (in theory) than some of these autoimmune conditions. I for one am so grateful I don’t just think I have fibromyalgia anymore.

One critique of the book I’ve heard from other patients is that some of these treatments cost a lot. I don’t think the book was designed to be a book on how to self-treat or treat on the cheap. Some of these conditions require specific testing, which costs money. Some things, if you’ve tested or diagnosed clinically, you can treat yourself herbally and with certain supplements. That is addressed in the book and he provides resources to do that, to an extent. It’s a shame these treatments are not better covered by insurance, but that’s another topic for another day.

My issue with the book is that there is a only small section on mold sickness, but not a lot of emphasis on this or information. Often mold and Lyme overlap, more so than this book would have you believe. It’s hard to find a doctor to treat mold sensitivity properly, so I wished there was more information on this. Also, there wasn’t anything on EMF sensitivity, which some Lymies are finding is blocking their recovery. But, most other conditions that are commonly found with Lyme are covered.

I’d definitely recommend this to patients who want to be sure their treatment is on the right track, to new patients to better understand it, and to all medical professionals, since so few know much about Lyme and MSIDS. For people who have trouble reading, there is an audio version. Personally,  I used a highlighter and read a chapter or two at a time to help with processing of information. If you are interested in an online book group to help discuss what was read, please use the contact page and I can put you in touch with one.

It’s the best book on Lyme I’ve read and I highly recommend it. ***** (Five stars)

Related Articles: Are Your Fibromyalgia Symptoms Due to Lyme Disease?

and Are My Anxiety and Depression Due to Lyme Disease? By Dr Horowitz

Luce’s Gluten-free Bread

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I was lucky enough to receive some Luce’s GF bread mix from my sister and family for Christmas. Wow what a bread! I don’t know if you have tried many gluten-free breads, but they are usually too soft on the outside or too hard all around. Well Luce’s puts all of them to shame.

Luce’s is so easy to put together, just add water. There is some rise time and a long baking time (over an hour) but it’s worth it.

So far we’ve tried the sourdough, which tastes just like sourdough, which is my favorite, and the buckwheat. Both have a nice thick crust, like french bread, and a soft interior fluffy bready part. The crunch to the outside is what’s I’ve been missing my 15 years of not eating wheat bread. The buckwheat is similar in texture but has a few seeds in it (pumpkin, chia, etc) and a slightly buckwheat-y flavor. I tried to tell myself it’s healthier with more variety.

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The bread is not yeast-free or carb-free but the ingredients are simple. It’s all vegan and doesn’t rely on eggs for sticking it together like other GF breads. We don’t eat it daily because it disappears so fast, and it’s a smaller loaf. So far we’ve been having it once a week on the weekends. We just served it to company last night and our dinner guest said it definitely could pass as non GF bread. He asked for seconds on it.

The initial mixes are $7.95 but you can get the flour packs in bulk for only $2.75 if you find your own baking bag (not even needed for rolls) or buy them for $2. It’s definitely more affordable that way. (This item was purchased by me and I was not paid to review it.)

Luce’s, you are our heroes for making such a convincing and deliciously crusty GF bread! We love you! Now, please make bagels.

Liver Helper Juice

Ever since I had issues with my gallbladder, I still get some pains in my liver. It went away for a few months, and I was very happy, but now it’s back. I’ve been trying to take extra good care of my liver and feeding it beet juice helps. The lemon and ginger are also good for beets, and help with the flavor as well.

Liver Helper Juice

ingredients:

  • 2 small or 1 large beet
  • 3 stalks celery or a cucumber
  • handful of fresh parsley
  • 1 inch ginger
  • 1 lemon (peeled if not organic)
  • 1 small apple

Push all ingredients through juicer. Strain if desired.

I’ve also been adding some more items to my Etsy shop. Check it out!

elephant trunk love 1

cocoa bean bar cover 2

goat beets hoop art

Vegan Package Swap: German Edition

Hi everyone. I want to post more in the new year but I do find myself still struggling with using wordpress and I think that keeps me from logging in as much as I’d like to. I should probably either take some sort of course to learn more or go to blogger.

Way back in November I did a package swap, international this time! We didn’t get each others packages until December. It was worth the wait! So much fun to get a package of vegan and GF treats from another country. And it was sugar-free too!

tigertee swarz tofu

Schwarzwald Tofu: this was a delicious marinated tofu. I wish we could get gluten-free tofu like this in the states. Everything here usually had soy sauce or something to gluten it up.

Tigertee: a fruity rooibos tea. What a cute package too.

Gluten-free Beer: I don’t drink due to my medications and for health reasons (It causes increased pain) but I did have a small sip of this on Christmas to celebrate. I shared with my family, who drink on a more frequent basis, said it was quite good. It tasted very much like the beer I remember.

Raw Bite: These were very similar to the US’s Larabar. Very tasty.

Lupin Spread: This was really tasty spread on a rice cracker. I wish I could replicate it in a recipe. I haven’t even seen lupin seeds anywhere in the US.

Tartex: We can’t figure out what this is! It seems like it’s very rich and fatty. Maybe a German version of vegemite?

Overall I was very pleased with my package. I decided to take a break from the package swaps for December and January due to my other Etsy things I was already at the post office enough and I had signed up for a few Secret Santas. I like that one can choose each month whether to join.

Hope you are having a good week.

Making goals with chronic illness

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Happy New Year! This is the time of year when people like to make resolutions, goals, out with the bad, in with the new, right?

It can be hard to face that if your health is poor or unpredictable. However, please don’t lose hope. There are some things you can do to make goals for the new year.

Short term goals are good

I like to make short-term goals, and then not give myself strict deadlines. For example I write a to-do list but don’t worry if I don’t cross things off in one day, I just leave it until the next day.

Be Realistic

A few months ago, it was very unrealistic for me to think that I might be able to do what I have energy for on an average day now. I knew my limits. So I usually only planned one thing per day, because I’d need the rest of the day to rest. Some people may need 3 days to rest after.

Making health goals

Making health goals can be done with or without your doctors input. Instead of making goals for how you will feel, make goals on which health issues you want to address. That’s the part you can control. For example last January, I made a goal to address mold poisoning and some other genetic issues I had heard about through a lyme conference. When I did treat them, I felt better. But my goal was to find a proper treatment, not to get better, since that part is not always in my control.

Making personal goals

It can be hard for a lot of people who are sick to make personal goals. Perhaps your hobbies were taken away by your illness. I am unable to do pottery which I loved, due to a bad back. Bad joints keeps me from skiing which I loved in my old life. It took me awhile, but I found new hobbies which I could do within my limitations. Even when my hands were so painful I could not type, I still listened to books on tape and used Dragon Dictate to help me “write”.

I see a lot of sick people give up on personal goals. I do think that trying to find something you can still do and carrying it out can help with depression and hopelessness. Some people even find connection with others is a good goal. If you are sick, perhaps finding like-minded people or others with your same illness online can be a goal so you feel less hopeless.

Diet Goals

Many a year and different times of year I have had diet goal or “resolutions”. Sometimes with diet it can be easier to ease into it rather than be too strict. However others like to clean the house of the forbidden food and then go cold turkey. In the case of diet, dates can be helpful. I like to make a goal like, “No sugar until Valentine’s day”, so I know I will have a good stretch of time where my body can heal from the sugar. Then if I really still want it on that date, I will indulge. My body has had a break so that small amount of sugar will not be as harmful as the daily impact.

This year I want to add in more juicing. Since my nausea has been much better, I can tolerate juicing more. Therefore I think it’s reasonable I want to juice a few times a week. So far this past week I’ve done a good job at it. If I forget for a few days, no sweat but I’ll try to remind myself to get back on track.

Setbacks

We all have setbacks from reaching our goals. Try not to give up. I like to give myself a day to just recover if it’s been a tough time (like driving for me, it really takes me down!) I used to have to take a few days or a week. It’s OK to do and don’t feel bad about it. In fact not taking that time can mean even worse health issues. If your body says stop, stop.

Again I mention not having too strict of a deadline. If you have a goal of reading a book a week, and you fall short, you will perhaps get down on yourself. Change expectations but keep the essence of that value of reading, for example to 2 books a month instead.

Hope this was helpful! I have been able to make life changes by setting goals. It makes me sad to see other people with chronic illness giving up on goals for fear of failure. Perhaps you can really change your life to be healthier or happier, or both by setting a realistic small goal. Just keep at it and change can happen.

Happy New Year! Wishing you all a happier and healthier 2014.

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Merry Christmas

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Merry Christmas to all who celebrate!

 

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I started my day with some beet juice with lemon and ginger to detox my liver. And my usual oatmeal.

Hope you have a wonderful day!