Finally beat Lyme.

So hey everyone. Wanted to give an update. I know most want to hear there is hope.

So it’s been a year since antibiotics. I feel fantastic.

Here’s my story in a nutshell. A long nutshell. Lol.

8 or so years of symptoms. Last several of those were so horrendous I could not function. Too much pain too much sickness. Too many symptoms to handle. Everyday I told myself that tomorrow I would be well. Tomorrow. There would be no pain tomorrow. Each new year and birthday I told myself this is my year. I will be well. I will be pain free. Tomorrow never came.

Then I had 4 years of antibiotics. During those years I was so darn toxic. I have mthfr gene so I could not detox well. I woke up every day during those 4 years and asked myself why was I doing this. I was so sick. I was never going to get better. I wanted to die. I saw no hope.

Several health crises during the antibiotic phase. Several hospitalizations. The last one was the last straw.

Wound up in the emergency room with prolonged qt syndrome due to toxicity from the antibiotics and other drugs the dr had me taking. I’m Lucky to be alive. My heart needed to be stopped with drugs to be restarted again with paddles. However the drugs to stop the heart didn’t work and my heart condition continued. I was pumped with so many bags of saline within minutes to try and flush the drugs. Took a few days but I recovered. Thankfully. I needed to stop treatment or I was not going to survive the next time the prolonged qt happened and the dr assured me it would happen again but would probably not make it to the er in time to get help. I was looking at instant death if I ever took those antibiotics and anti nausea meds again. So, the decision was made. No agonizing whether I was ready or not to stop treatment for Lyme and co. I had a lot of anger toward my dr for putting me in such a serious situation without informing me of the risks and how compounded they were by the amount of black box antibiotics and other meds he had me on. So I did not consult my Lyme dr. I listened to the er dr and the internist who came in to see me while I was in the er. In fact she begged me to stop treatment. And a few days later she came in to the cardiac floor I was moved to because she wanted to make sure I understood how much danger I was in. I listened. I got it. I went off all drugs and stopped treatment for Lyme immediately. Never saw a Lyme dr again.

After that incident, I stopped all gluten and went through my diet. I went on an elimination diet and slowly brought foods in to figure out what was bugging me. I had gastroparesis which is a non functioning stomach. I saw immediate results. Since the pills were no longer ripping my insides apart the elimination diet was working. I could see what worked and what didn’t.

Did great right away! Then I hemmed and hauled about adding in exercise. I was worried I would tear another ligament or tendon. Then the pandemic. I got bored and decided now was the time.

I started yoga.

Yoga has changed my life. I went from falling all the time because my balance was so poor to doing one leg poses. I never even worry that I will fall anymore. I went from weakness and pain in muscles to quickly gaining strength and becoming pain free. I went from insomnia to a good night rest. In fact now I can sleep 12 hours if I want to. My body craves sleep and I’m able to finally say I’m filling the need. I no longer have stomach issues although I eat crazy clean so that helps. I had horrendous anxiety in addition to Health anxiety about another heart occurrence. Yoga has solved all anxiety. I no longer have any memory problems. No confusion. No Alzheimer’s like symptoms. I do yoga every single day. Every. single. day. It has been my road to health and I have no intention of ever getting off that road.

I finally can say Lyme disease is behind me. I used to think about it everyday all day. It never left me. I was not living at all. Everything was a struggle. You all know. I don’t have to tell you the hell that Lyme and co are. Now I never think about it. I do not think of myself as a sick person anymore. Although I do have type 1 diabetes (insulin dependent type) and hashimotos I don’t consider myself someone who is chronically ill anymore.

I feel well. I feel capable. I feel stronger than I was. Getting stronger everyday.

Would I do the antibiotic treatment again? Yes. Would I blindly take them for years upon years? No way. Would I have started yoga during recovery? Yes. Definitely yes. It would have helped keep my muscles from atrophy. It would have helped with anxiety. It would have prevented the shortening of ligaments from being bedridden which causes too many issues to even list. It would have brought me hope and a sense of control and peace. It would have helped the insomnia. So many benefits.

Since I started yoga during the pandemic I did classes online. Free on you tube if anyone is interested. I did not pay a cent. There are so many great instructors on you tube giving their classes away for free.

Not trying to tell anyone yoga healed me. It did not. But it did help me over the hump. It helped fix what I thought was the damage that I would live with for the rest of my life.

So here is where I am. I am healthy. Feel good. Feel hopeful that each day will find me stronger and healthier than the day before. I do not worry that Lyme will rear its ugly head again. I eat clean. Do yoga which keeps my immune system strong and keeps me happy and calm.

Life is now good. I have a future!

Take care of yourselves. Listen to your body. Eat well. You will beat this. It will happen. There is hope!

I would like to thank everyone here for all the advice and support over the years. It helped me stay connected and less alone through all of this! Love and light to you all!

Insomniaa,

My heart did not stop. I did not have a heart attack. My heart was beating way too fast and the upper and lower chamber were overlapping. The treatments they tried to restore rhythm weren’t working so they tried a last resort which was to give me a drug to stop the heart and paddles were placed on my back and chest...they were sticky...to restart the heart if it didn’t begin beating on it’s own again. But the drugs to stop the heart didn’t work so it just kept beating crazy.

I don’t actually remember if azythromycin was one of the drugs. I was taking 8 drugs that had the prolonged qt warning.

Rifabutin, zophran and flagyl were 3 I can remember I was taking.

Since that whole ordeal I’m at high risk of reoccurance. If I need anything with that warning I will be hospitalized and on heart monitors during the duration of the treatment. I can’t take many over the counter things anymore either. Not even a Pepcid. I have a list 3 pages long of risky medicines and over the counter stuff I can no longer take. It’s crazy. Be careful everyone. This is no joke.

Walking

Never got the dental stuff done. Was way too nervous. No problems in that department. Glad I never got it done. Did have an old crown removed and replaced. And A filling removed and replaced. These were done by a biological dentist who took great precautions not to expose me to mercury. Also he used ozone before replacing the crown and filling.

I did not have mold in my home. It was a new home when we moved in and we were the only owners. We moved to a brand new home a year before starting treatment. So there was never any mold here either. Haven’t moved since.

joee!!! Great news! I'm so happy for you!


You went through some tough times....and so good to hear that is in the rear view mirror.

Garzie
I practice with “yoga by Adriene”. She has over 750 free videos on you tube. She has beginner videos too. And also what I like is she does a monthly calendar. If you go to her website there is the Monthly calendar to download. It changes every month. With that calendar it is like a month long practice that builds on the day before. Each date is clickable and takes you directly to the you tube video for that session. No scrambling to figure out what to do and where to find it. Following along with the calendar ensures you are not overworking one part of the body. Just remember that you don’t need to be flexible or able to do all the poses. Yoga meets you where you are each day. Do what you can. Each day you will feel different. You may be able to do a pose today but not tomorrow. Also important. Follow along with the breath the best you can. It’s all about breathing. So good!!!!

Brett Larson is really great too. Her prompts and explaining how to do each pose are spot on.

Each of them have paid subscriptions but you don’t need to do that. There are enough free videos to keep you flowing for a long time. They are quality videos and they are both excellent instructors.

You don’t need fancy yoga clothes just something comfortable. I started without a mat but did buy one after a few weeks. I have boney knees and I need the extra padding and Carpet is hard to get a good grip on so a mat is nice. I also got two blocks and outgrew them quickly. I hardly use them anymore. You can use books to help reach the floor though.

Enjoy!!!

Joee - Awesome news.

I have quite a few "bad" liver pathway genes which ABX made me feel awful.

Diet is a huge deal, yet some wont commit for some reason. Of course it might require more food / diet investigation for some vs others- its worth it in the end. Easy to forget that Food is for energy, its not for entertainment.

Do you get hour Hashimoto antibodies tgab and tpo levels tested? My base line before and after diet change is pretty big. I had high antibodies of both for 20 years, then 3 years ago 100% Gluten Free normalized one of them and reversed a thyroid nodule, sounds almost unbelievable but its true. 90% gluten-free was not enough. Found out from repeated antibody testing. There are other foods I also avoid but gluten is the most important apparently

I found in person Yoga class was not for me (pre-covid days), online its better at my pace and a lot of yoga moves just hurt me to much. Were all different- do what works , but try everything!

I went pretty deep in learning self - myofacial muscle, tissue and tendon release. Then I only do a few yoga moves as longer stretching afterward.

Post Edited (astroman) : 12/2/2020 2:13:54 PM (GMT-7)

Do you know if your insurance/community offers free yoga classes? I believe mine might have a few wellness courses available, but not sure if yoga is on the list. Also, has anyone been able to find any free relaxation courses in your community?

In a lot of cases here where gluten makes a difference that is not the only thing going on it’s just that lyme made gluten worse, made the gut worse. And it’s not just glutan, most eliminate other foods as well.

Part of the immune system is the gut health that many of us no longer had. Getting that back is crucial.

We have to remember that herxing is not good for our bodies even though you may be killing stuff which is good. Killing stuff without herxing is best but hard to do for a lot of people. This is why it’s important for some people to just take time off ABX in between sessions.

This is why I took the guessing out and had food cytokine testing, the MRT test.

Post Edited (astroman) : 12/2/2020 3:48:46 PM (GMT-7)

"Astro - yoga shouldn’t hurt. It’s important to understand the purpose of each pose and adjust until you’re feeling a bit (stretch or stress as appropriate) and then stay there."

But it can hurt some people with lyme who are experiencing major range of motion limitations. This is a good example of tendons being the limiting factor in stretching range if your tendons are tight and short. Very tight muscles or those with adhessions from injury also apply to this rule. Those who have experienced this (to this extent of tightness) will get get what Im saying.

You really can't stretch a really tight tendon. BUT with sustained pressure you can release the tension (triggerpoint, active release ect) and THEN stretch once its pliable. When thats the case, it will usually shorten up and tighten again, however, its repeating this cycle that eventually heals the tendon to normal. Release, then stretch (if possible).

That said, everyones a little different, and to this day I just feel more benefits from myofacial release (which is a broader area "tissue melt" and less aggressive than triggerpoint and active release). Then I do just a few floor stretches after, a couple are simple yoga core poses.

Post Edited (astroman) : 12/3/2020 8:20:17 AM (GMT-7)

Moose

First I need to state that I had gastroparesis as one of my first symptoms of Lyme however at the time no one could understand why I had gastroparesis being as I’ve always had great control of my diabetes. So This meant that my stomach did not digest food At all and nausea, pain and vomiting were a constant issue for many years. When diagnosed, the specialist told me no fiber. Meaning no fruits. No vegetables. It was crazy that I was encouraged to eat essentially junk food. White bread. Junk cereal. Etc. And liquids. Because I had no trouble with liquids. This was nuts because being a type 1 diabetic junk food makes blood sugars really hard to control. Timing of insulin gets screwed up and it’s just a nightmare. And then I need way too much insulin as I chase my blood sugar all day and night. Then they say keep your blood sugar in control or you’ll mess up your stomach nerves which digest your food. Insert pulling hair out here. So you can see the dilemma I faced.

But even doing that I was not getting any relief.

Ok so then Lyme diagnosis was years later. So. During my treatment I had started with eliminating gluten. It didn’t help. I got so sick from treatment that I went back on gluten just so I could get something in myself. Cycling back and forth trying different foods just trying to digest something.

Treatment helped the root cause of gastroparesis but was shredding my stomach in a whole new way. When I went off antibiotics for good there was a huge relief as my stomach started to heal.

So I started the elimination diet as a way to see what else I could do to make sure I wasn’t adding insult to injury. And found gluten can not be digested. At all. I can eat all fruits and vegetables though. Dairy also a problem as is meat. So I can not eat gluten, dairy or meat or I start gastroparesis symptoms.

I can eat any time of day. But being type 1 diabetic I prefer not to eat after say 6 because I don’t like to go to bed with Tons of insulin from a meal floating around in my body. If there is too much I may have a low which then just wakes me up from sleep to treat and I won’t be having sleep disrupted if I can help it. Lol. And if I needed more insulin for said meal I hate to be woken chasing a high blood sugar all night. So these are just things unique to me and my circumstances and my desire to sleep without my blood sugar being the cause of disruption any more than it has to be

I really can’t give anyone diet advice as I am not a dietician. I eat the way I do so my stomach can digest the food. I eat vegetables. Fruit. Beans. Tofu. Almond milk in place of milk. I make and eat all the old meals I used to eat just replace ingredients with agreeable foods. Like I make chili but use no meat. If I want a cream based soup I use almond milk instead of cream. I use lentils or tofu in place of meats.

I read all labels for gluten because I’m not sure if I have an autoimmune issue from gluten or is it just hard to digest for me?? Idk. So I don’t let any gluten sneak in.

I don’t eat in restaurants. When we travel we stay in Airbnb so I can cook for myself. No eating out for me.

When for some reason I have a gastroparesis flare I give my belly a break for a week. I eat cabbage juice for breakfast. Oatmeal for lunch and miso soup for dinner. For a week. That heals any ulcers I get and it calms the stomach down.

So my eating I just what I need to do to keep the gastroparesis from acting up.

No meat. No dairy. No gluten. Almost no processed food just because it kind of fell into that by doing what I need to do.

It’s really quite easy for me to eat this way and I try to make sure I’m getting all the nutrients I need. After covid I will get to a dietician to get my diet looked over to get advice on making sure I’m not lacking in vitamins somewhere.

many thanks, your healing story is much interesting to read, it will help me put the picture together a little bit. I am just on the verge of full recovery too, just missing that last piece of the puzzle...