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Posted 5/8/2020 11:00 PM (GMT 0)
Recently i've been dealing with these burning/stinging sensations as well as other sensations that are really bad that are hard to describe but run through my body. Any advice? I think this is Lyme or some other type of infection just really going haywire. I have trouble tolerating many things at this time. Is there some recommendations that might help though? Doesn't have to be Lyme specific just something that could help bring these down regardless. I might just wait to see if it dies down on it's own as it wasn't like this before a few days ago but just in case I feel the need to really do something about it.
Posted 5/9/2020 12:07 AM (GMT 0)
I have it, too. For me, it’s triggered often by exposure to mold or chemicals like fragrance. I don’t know if it’s MCS or MCAS, as they seem to overlap. Toxins either from the environment or internally cause lots of burning inflammation for me. Avoidance of triggers, backing off on treatment/detoxing, and taking TUDCA Plus supplements 2x day are the things that help me the most. Mold/yeast in the gut may be a big cause of mine, too.

If I remember right, you’re dealing with mold, too. After I got out of my first moldy house and started detoxing, I had constant burning for 8 months straight before I felt any relief. It was horrible. I still have it often. I am convinced that mold/yeast in the gut are producing toxins that I get exposed to internally. Strangely, it comes in waves. I had a reprieve for a couple weeks but have had a return of burning and numbness the past few days that councided with me taking oil of oregano (kills fungi among other things). TUDCA Plus has helped me with the internal toxins more than anything I’ve done.

Post Edited (WalkingbyFaith) : 5/8/2020 6:15:05 PM (GMT-6)

Posted 5/9/2020 12:17 AM (GMT 0)
I feel like I might have suggested these to you on a different thread, Hope.still, so forgive me if this is repetitive!

CBD can relieve nervous system symptoms very quickly. It only lasts up to six hours, though, so plan to dose often. Medical cannabis is also an option, depending on where you live, but CBD contains no psychoactive compounds and is legal everywhere.

Have you looked into mold? Trouble tolerating things and nerve sensations are hallmarks of mycotoxin illness, as well as Bartonella and other tick-borne diseases. Probably worth considering if you have not improved with approaches geared toward Lyme.

Also assess whether you have MCAS, which can make everything so much harder to manage and treat. I was able to reduce MCAS symptoms greatly with just a change to a low-histamine diet, and there are many supplements and drugs that can help as well. This time of year (in the northern hemisphere) is replete with airborne allergens, so I know a lot of people for whom MCAS symptoms are flaring. Stress also exacerbates it, and I think we're all under more stress than usual!

Also for nervous system:
Craniosacral therapy
Epsom salt bath
Embodiment practices, guided visualization, meditation
DNRS limbic system retraining
Lion's mane mushroom (excellent for nervous system but not if you have MCAS)
Magnesium
Massage
Essential oils applied topically (lavender, frankincense, rose geranium....)

Hope this passes soon for you!
Posted 5/9/2020 12:32 AM (GMT 0)
Thanks everyone, not dealing with mold in the house currently we think. Done many tests that came back negative or very low. Multiple ERMI and Hertsmi tests and an EMMA test. I got a significant amount of mold in the body from past exposures though and I can't tolerate many detox methods. I'm going to try to get in position to visit Sophia Health Institute because I think they can help me most as Im really complex and complicated and I haven't been able to bet better with LLMDs, naturopaths, on my own. Just trying to get to a spot so I can leave my house and get there being pretty much house/bed bound.
Posted 5/10/2020 1:02 PM (GMT 0)
If you don’t mind my asking, what was the HERTSMI-2 score from your ERMI? Did you take your possessions with you when you moved?

I am super sensitive to possessions out of my old house and was unable to get my clothes decontaminated even after repeated washings in borax. I tossed all my clothes. I am about to replace everything again. We are getting ready to move into a house we bought and had remediated. The relative’s house we were in got increasingly moldy due to a number of separate water damage incidents, so all of our current possessions need to be replaced again. Mold illness is a brutal life and financially devastating.
Posted 5/10/2020 2:47 PM (GMT 0)
have you tried antiparasite meds like ivermectin and albendazole?
Posted 5/13/2020 12:25 AM (GMT 0)
Hey guys sorry I didn't get back and I might not get back for awhile but I will read any responses for some help when I can. I'm worse than ever. I think what happened is that I took an adrenal support supplement that contains a good amount of B vitamin. From past experiences I've done horrible with B vitamins. B vitamins help methylate and my body is not in postition for methylation support. I'm pretty sure it pushed toxins/infections out so it's undergoing that process and it's causing a host of symptoms but also making my nervous system so sensative at the same time as the toxins and infections are out more. Anything I eat or have tried to take just adds on no matter what. From small amount of chlorella to a small drop of cbd. To any food even if it's healthy/low histamine. Just pain vegetables were taking about even. It doesn't matter it just feels even if something makes contact with my body regardless. It wasn't close to like this a week ago. It's not the environment it's my body/body process. I mean my whole body is in flames/stinging sensations other sensations that run through. Even laying on my bed whatever positition i'm in the symptoms get worse depending on what part of my body is in contact with it. I hope I can make it. If this doesn't die down soon Im not sure im going to make it either naturally or by my own hands. Ive tried neuroprotek just one pill which is all natural for mast cell as some of you probably know about and my symptoms got worse. It doesn't matter what. Anything and everything.
Posted 5/13/2020 12:41 AM (GMT 0)
You probably have small fiber neuropathy. I have it, burning and stinging and buzzing everywhere. It’s usually autoimmune. You need a dr to prescribe IVIG. Gabapentin will take the edge off if you’re feeling like you’re gonna kill yourself. I read so many bad things about gaba and didn’t use it for the first year I had SFN. Didn’t want to rely on it. That was a mistake and I suffered needlessly. Now I’ve got a prescription and I just use it As Needed. It really makes me feel like a human again. You can’t do that with Lyrica or Cymbalta.

I couldn’t handle b vitamins. Also can’t handle CBD. Even prednisone makes me flare. The only thing that helped is IVIG and now I’ve developed a rare allergy to it. Trying Rituxin and plaquenil now.

Please don’t let anyone tell you it’s just untreated lyme or mold. These things can trigger SFN, but once it gets going it becomes an immune system reaction that needs to be shut down.
Posted 5/13/2020 6:17 PM (GMT 0)
This may sound stupid but...have you tried Claritin? (the generic is called Loratadine). It is very affordable, I bought the GoodSense brand online (365 count, year supply) for like 12.99. It helps when my body experiences inflammation. I forget to take it sometimes, but when I do I notice a relief.
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