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Nothings working. Feel like I'm at the end.

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Lyme Disease
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Posted Yesterday 5:57 PM (GMT 0)
Hello,

I'm back. With the same details re: my condition. 2 yrs after my symptoms returned and LDN stopped working, I have tried almost everything and seen multiple practitioners, to no avail. Just can't figure out what is going on in my brain and how to fix it. A dr said he highly doubts it's mold. He thinks its not immune system related and beleives its only neurological (isn't the nervous system related to the immune system too?). Sigh. I am tired of throwing money away on treatments, for nothing to work. I react to everything. Treatment stops and I try something else. No one can figure it out. I am tired of repeating my story. I am tired of having no life. I am tired of explaining my symptoms and having drs look at me like i'm nuts, like they don't understand. And then they tell me what they think is wrong. I am mentally and physically exhausted and just want my life back.

Help.
Posted Yesterday 6:39 PM (GMT 0)
I know you've been trying things for a long time, and how exhausting that is! I'm so sorry you have not found a good path out of this yet.

I remember you tried DNRS a while back and were having trouble sticking with the mindset changes and visualization practice (if I'm not mistaken). How did that end up going for you? When I read that people have ongoing neurological issues and have not been helped by various types of antimicrobial treatment and/or mold treatment, then my mind always goes to limbic system retraining. I know that those programs can be very difficult to adhere to, though, because they can involve such a radical shift in not just lifestyle but thought patterns, and that's easier for some than others. There definitely were times in my illness that I would not have been able to commit to it genuinely. Do you think you'd be up for trying it again, or do you feel like you already gave it a thorough shot?

I understand your objection to a doctor attempting to silo one body system by saying that your symptoms are all neurological. All the body systems are linked! Your nervous system is related to your digestive system, your digestive system is related to your immune system, your immune system is related to inflammatory conditions and joint issues, etc. They're not really separate systems, and it's irritating when doctors try to dismiss that. I hope that you find practitioners and advice that resonate and make a positive difference for you!
Posted Yesterday 7:11 PM (GMT 0)
Have you done an ERMI test on your house?

If you work outside the home, have you done an ERMI test on the workplace?

That’s really the best way to determine if mold exposure is a factor.
Posted Yesterday 7:12 PM (GMT 0)
I just looked at your last post. Did you get the results of the Great Plains mycotoxin test?

Also saw where you had past exposure for many years. Did you recover after that and then get worse again? Were you able to identify any triggers?
Posted Today 1:43 AM (GMT 0)
Keep trying-look for out of the box docs.
I used a guy in St Louis-his Clinic is called Prevention and Healing-I think he is a great out of the box MD
Posted Today 3:55 AM (GMT 0)
Totally understand how you feel. Many on here do. I had this beaten down for more than 18 months once, then a surgery brought it all back. That was more than 6 years ago. But every time I start to just give up, I find I can't. Just have to dig deeper and find a way to keep going.

Now I deal with kidney problems, heart issues, Sjogrens, neuropathy, Lyme, Bart and Babesia. Overwhelmed. But I'll be damned if I'll allow it to win. That's the only way to look at it, despite wanting to throw it all in each day.

Instead, I workout each day, still coach high school kids and keep looking for answers. Find something you can grasp onto and do the best you can with it. We never know when an answer will be around the corner. And they keep on working on stem cell treatments, which, I believe, could change everything. Hang in.
Posted 12/8/2022 6:17 PM (GMT 0)
Sorry I went MIA. My nervous system got hit hard with some sound triggers and its slowly getting better.

Running wild: thanks for your input. You are actually in a much better situation than me. I can't even go outside. It is horrible. I have zero energy for basic tasks. My EMF sensitivities are so bad I can hardly use my phone for connecting with the outside world. Thats the tip of the iceberg. Wish I had someone who could research treatments for me. I can barely spend time on the internet to do so.

Magoo: thanks, will look into it. Slim pickings here in Canada though. I've been dealing mostly with practiioners outside of the country.

WBF: We moved within our building a few months ago (didn't have a choice, not health related though). That was were I had done the ERMI test. The one where you collect dust from your home. ANyway, money down the drain because after I did the test we ended up moving so *shrug*. Now in our current unit I feel there is no use to do another test because we have decided we will be moving again (again not health related, just some other issues). So we hope to be out in a few months. I did do the mold test through great plains on myself. I posted the results though I didn't treat for it. I don't work, havent worked in years because of health issues. My gut tells me its not mold related though. I have a hunch its something else, but at this point I really dont know what. So thats where I'm at at this point re mold stuff. Current practioner said its not mold related but he also does not seem very well versed in my condition, thats anothe story. Will be moving on from him too. Deep sigh.

Sara: I could try DNRS again however I am skeptical of its results. When I first tried it, i went gung ho for 3 months, then stopped. Right now I dont have the strength to do the movements. And apparently they said this is key to the practice. So I don't know really, what to do. sad. Interesting that they say it has led to success in Long Covid patients who have had similar symptoms to me. Not sure what to make of that.

I have pretty much been confined to my room for the last 2 yrs since symptoms returned. And each day, with each sound trigger, I feel worse. I could cope before but now its really beginning to affect me. Quality of life is very poor. So just feeling like I'm at the end of all this. Desperate to regain my health and life back. Thank you for reading and offering tips. Willing to accept any prayers or postiive vibes, anything. Send em over! LOL

I just wish I could figure out what is causing me to react to treatments and why I can't tolerate anything. This is the million dollar question and why I keep having to move on to something else.
Posted 12/8/2022 7:29 PM (GMT 0)
if ldn worked for a while then th1:th2 may be outta wack . this gives a few clues. and a few things to try to get your strength up to a point when treatment may be tolerable . everyone has a toxic burden when that burden exceeds the body's ability to get rid of them then blammo we get high histo mcas and chem and food sensitivities. permeated intestinal lining is a great deal but also liver pathways and methylation even circulation may affect how we can detox.

do symptoms ramp up after eating? are you consuming allergens ? do you have long haul on top of msids . i understand a limited budget makes trying things difficult but a subL b12 may help start if you have copies of mthfr gene. also binders like activated charcoal or chlorella are cheap may offer some temporary relief and would point clues to toxic burdens . some colliodial silver may be active against viral and bacterial infections try some health food grade before making your own. if pain and sound sensitivity are dibilitating try to mitigate with musicians earplugs for public and kratom or white willow may take the edge off to get to the next plan .

at one point i had 9 stystemic infections taxing all systems and it was a dark dark feeling like your in now . one by one largest to smallest as they faded i got stronger. dont give in , apply for lymelight grant , use cheap herbs like butterbur and chinese cats claw to help the nervous system. learn self kinesiology to test things and play detective . give yourself a time frame to try things like bentonite or epsom salts baths . everything and everyone needed to get you better is already on this planet , you just have to find your path . keep us posted
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