New to this forum and need help......almost given up

Hi,

I’m new to this forum and would really appreciate some help, tips or even just some reassurance as I just feel like giving up. I was diagnosed with Lyme, Bartonella and possible Babesia in April 2019 through Armin Labs in Germany.

Symptom Background:
Looking back my symptoms started in August 2014 with 24/7 calf & foot arch twitching, this didn’t really cause me much bother so continued on as normal. Over the years I started to randomly go lightheaded for a few seconds but this only happened at work so just put it down to stress. Fast forward to January 2018 I had a bit of a health scare, Mole required biopsy, thankfully everything was okay but the weeks waiting for results led me to become severely depressed and anxious. In March 2018 I had a massive panic attack and went severely downhill and haven’t felt the same since. Following on from this I started having the following symptoms;

Body wide muscle twitching
Severe eye floaters
Air Hunger
Headaches
Swaying feeling when walking
Inner vibrations
So anxious I feel like I’m about to die
Severe depression
Tight chest
Tingling
Buzzing in ear
Funny head sensations like my brains shutting down.

I had so many tests, basically because I just didn’t know what was going on with my body. I had a CT Scan (Head), Chest X-Ray, 14 ECGs, 24 hour heart monitor, 24 hour urine test, Lyme disease test Elisa x 3, multiple blood tests Liver, Kidney, Hormones etc.. The only thing that came back abnormal was my Vitamin B12 was severely low at a level of 50. The doctor was shocked at how low my vitamin b12 was and said he was surprised I was walking about or not dead! I was started on every day hydroxocobalamin injections plus 5mg folic acid. I have continued doing this every other day at home as I continued to see slight improvements.

As the months went on I began to see improvements in symptoms with the b12 jabs. My air hunger, tight chest, tingling, and headaches all went away, however I was still left with many symptoms and just felt like I was dying! I went on to see many more doctors, emergency departments who all either blamed it on panic disorder and severe depression or lingering damage from my b12 deficiency.

I started doing research on the internet and Lyme kept popping up so I decided to go see a Lyme Doctor. She sent my bloods to Armin labs in Germany and they came back positive for Lyme, Bartonella and possible Babesia. I started an antibiotics & herbal regime in May 2018 which consisted of pulsing and switching antibiotics. The antibiotics and herbs I’ve been on are below;

Doxycycline/Cefuroxime/Co-Trimoxazole (Bactrim)/Artesunate/Artemisinin/Grapefruit seed extract

Amoxicillin/Tinidizole/clarithromycin/Artesunate/ Mepron

Doxycycline/Cefuroxime/Rifampin/Artesunate

Herbs/Supplements
Cats Claw
Houttuynia
Sida Acuta
Ginseng
Resveratrol
Enula
Pinella/Burbur
Magnesium
B12
Glutathione
Nattokinase

I’ve been on all of these for a year now non-stop. about 6 months into treatment I did a mold detox with Cholestyramine, Activated Charcoal and nasal rinse.

My current symptoms are;

Body wide muscle twitching
Severe eye floaters
Swaying feeling when walking
Inner vibrations
So anxious I feel like I’m about to die
Severe depression
Buzzing in ear
Funny head sensations like my brains shutting down.

I just need help! The past year I’ve been on all of this and haven’t noticed a single improvement! I don’t Herx, I don’t get better, I don’t get worse, just stay the same!

Even my Lyme doctor now thinks that some of my symptoms could be anxiety and things like the muscle twitching could be nerve damage from the b12 and Lyme.

I just feel like giving up! I’m constantly anxious and just don’t want to go on feeling like this much longer. All the money I’ve spent and nothing.

Please help

Thanks

Sam

holy basil got me thru ... attack bart to quell anxiety ... took me 9 months

Thanks for replying Bluelyme.

I’ve been attacking Bart for a year now with antibiotics & herbs and the anxiety is still severe. I feel constantly anxious, on edge with a sense of impending doom. It’s crippling! I think a lot of it might be psychological with a mix of mold. I really don’t help myself though with constant googling of symptoms and body checking.

Sam

Thanks for taking the time to reply and for the encouraging words Saraeli.

I tried CBD oil a few months back but didn’t really feel any different, maybe I needed a stronger dosage as the one I was taking was only 5%. I’m currently taking Curcumin 500mg 3x a day and Liposomal Glutathione to help with inflammation. I’ve looked into DNRS but always been a bit sceptical, is it worth a try? It just seems too good to be true. I tried CBT last year but just can’t focus on anything else but how I’m feeling. It’s like a somatic symptom disorder, I’m just crippled by my symptoms mentally if you get what I mean. My doctor had told me to start taking Sertraline to help the anxiety and I’m really considering it at the moment.

I think mold is a massive issue for me and will get back onto my mold protocol in the next few days. I’ve had a comprehensive stool analysis done and my gut looks healthy apart from a yeast overgrowth, probably from the antibiotics I’ve been taking.

Thanks again

LymeSurvivor said...
Sam, I wanted to say you can do mold cleanup yourself. You just have to be very careful and Wear the proper equipment. I did my bathroom myself, including ripping off the walls and treating the studs, then putting everything back. I did find however that cleaning up the mold I could see did make a big difference for me. I also however had a few days of not feeling well after I did this as sandyfeet mentioned. You mentioned the cost of Lyme in passing. I have never found anything that has cost me more with so little results. It takes a long time to find something that works for you, and all of us are different. Hang in there, I can tell you it does get better. I find keeping a journal of how I feel, what I've tried and what I eat has made a difference for me.

Thanks for replying Lymesurvivor.

I’m looking into maybe renovating the bathroom as we’ve had so many leaks from the shower and the mold is now visible. It was on our todo list when we purchased the property in 2017 but with falling ill and all it’s been left unfortunately.

Tell me about it, I think I’m closing in on 10K or maybe more. The only thing I can say that’s helped me is b12 injections, the cheapest thing!

Sam

I did not read through the others’ responses, so this may have already been said. Did you do an ERMI test on your home and workplace? Did you find out where you were being exposed to mold?

I have CIRS from mold and Lyme/coinfections. The swaying feeling when walking is a big mold symptom.. Sounds like you are either still exposed to mold or mycotoxins on contaminated possessions or you are still heavily detoxing mold.

Edit: Okay, I went back to the top and read some more. I see my hunch was correct. You’re still in exposure. I understand the difficulty of getting out of exposure. It is absolutely necessary. There’s no way around it unless God supernaturally heals you. I lost everything - not once but twice. I walked away from all my possessions except my car, and I am about to do it again. I left my workplace because of mold there, too. I worked from home until I couldn’t anymore and then I retired under disability. I had family to fall back on. I realize everyone doesn’t have that.

Many people will not get out until they are dying. You already said you feel like you’re dying. If I were in your shoes, I would consider extreme mold avoidance. You can learn more about it at www.paradigmchange.me. I have not done that, and I have not recovered, either, after almost 4 years since leaving my first moldy house. I am sure even today that if I were suddenly transported to a pristine environment that 70% or more of my symptoms would vanish quite quickly.

Post Edited (WalkingbyFaith) : 4/24/2020 10:40:13 PM (GMT-6)

I didn't note that you were taking an antihistamine like Claritin(loratadine)or Benadryl. The loratadine helps me alot, with symptoms that sound similar to yours.

I would try minocycline instead of doxycycline for two reasons. It crosses the blood brain barrier much better, and it it very neurologically anti inflammatory. It can also be hard to take so it isn't for everyone.

The body can become allergic to the herbals, I would drop all of them and stay on the doxy. Add the herbals back, one at a time, to see if you can identify an issue.

Liposomal glutathione made me feel terrible.

WalkingbyFaith said...
P.S. - Mold can cause horrible psych symptoms.

I should have explained that I did do whole house remediation on a house we bought but haven’t lived in yet. I know the sources have been removed, but don’t know yet what the ERMI retest will look like or how my body will react to the house. This house had no visible mold. Mold was inside the wall cavities below ALL the windows on the front and back sides of the house.

You said the shower had many leaks. Sounds like an extremely high probability that Stachybotrus is in the walls. I would get a professional to set up containment and negative air pressure and remove all water damaged materials. Stachybotrus can be deadly and occurs where there are leaks, as it requires water. I would not risk it.

Thanks for replying WalkingbyFaith.

I’m pretty sure my exposure to mold has been through work and the house I live in. We had a major leak in the offices at work about 5/6 years ago. The whole office was flooded with water because somebody left the hydrotap (hot water tap) on overnight. I also have visible black mold in my bathroom.

I had a Urine test done through the Great Plains laboratory and it came back highly positive for Ochratoxin A, Gliotoxin and Mycophenolic Acid. She mentioned that the positive Gliotoxin could also be a becasue of yeast issues in the gut.

I hear what your saying about the extreme mold avoidance but I just can’t give up all my possessions, I’m in no financial position to do so. It’s just a really crap situation. Surely though you can never completely avoid mold because it’s in food, in the air and on other people’s clothes so you never would completely avoid it.

I dunno, I’ll have to see how I get on with this mold protocol. I absolutely hate taking CSM, so bitty and just yuk.