Calming the immune system

I think a huge part of my battle is my immune system is severely overactivated. Any suggestions to get it to calm and quiet down? Usually people ask for the opposite and most times want to boost it.

I don't really think I have MCAS but at times I wouldn't be surprised if there was issues here or there, thanks.

Did you read my other response? You most likely have small fiber neuropathy. Its immune mediated. Do yourself a favor and google it and see if it sounds like you. Most of the herbs are just going to aggravate it. Trust me, I've been dealing with this for a year...a supplement is much too weak for what youre dealing with. IVIG is your best solution. There are biologics as well. Plaquenil is now helping me. There's also a school of thought that everyone w/ SFN has SIBO, and its been my experience that that may be true. If there's an underlying infection causing it it will continue to stimulate it and make it worse so you 100% need to take care of that, but youre unlikely to heal until you shut down the response. IVIG is the best bet to do that.

Every time I see someone w/ what I suspect to be SFN I speak up. I imagine I'm not always right, but I have the disease and I can recognize someone in my position by how closely their words hit to home. Someone else invariably suggests MCAS. Every. Single. Time. With all do respect, unless you've had SFN, you dont understand it. Its NOT MCAS. Taking an herb isnt going to remedy this. Its the most painful, scary thing you've ever experienced, and pretty much everything flares it.

Post Edited (dcd2103) : 5/14/2020 11:46:38 AM (GMT-6)

There's a naturopath named Mary Ruddick who is very respected in the SFN community. She had SFN really really bad due to a mycoplasma infection that turned autoimmune. She cured it naturally. I have yet to consult with her, I dont want to go down too many paths at once, but if youre not in the US and cant get IVIG then shes worth a teleconference with. If you are in the US, you need to find a dr who specializes in this and can get you on IVIG. Preferably an LLMD who can also take care of any infections you also have. Where are you located?

Post Edited (dcd2103) : 5/14/2020 11:48:09 AM (GMT-6)

Cool. As an FYI, whether or not you get IVIG is a function of who you see. Most neurologists, if they arent experienced with SFN, will poo poo it. What area of the country are you in, maybe I can recommend someone? Also, i would highly recommend joining the small fiber neuropathy FB group. Can ask questions there too. Finally, I'd recommend getting a prescription for gabapentin. Only use it on those days when you are your worst and NEED relief.

Hmm, i dont know anyone out there. If you cant get it out there, or are being brushed off, there are a few drs in the north east, and you may need to see one of them. Dr Katz in Orange, CT is my absolute fav. Dr Farhad in New Hampshire is also big in this. Dr Younger in New York as well. I know, its a big trip. But if its SFN, its imperative you get a diagnosis and IVIG. IVIG aint cheap and your everyday neuro will shy away from it, which means seeing someone who specializes in using it.

Looking at past posts Small Fiber Neuropathy is exactly what I'm dealing with. Whole body is burning/stinging, when things touch skin it gets way worse etc. Super Scary. Thanks dcd2103 for the call.

Hope.still said...
Looking at past posts Small Fiber Neuropathy is exactly what I'm dealing with. Whole body is burning/stinging, when things touch skin it gets way worse etc. Super Scary. Thanks dcd2103 for the call.

I had whole body inflammation and lots of burning and stinging. It was from mold and/or bartonella. When I moved from my moldy house and started detoxing, I had constant burning for 8 months straight. Burning is very common among mold survivors.

I am pretty sure I do not have SFN. Mine is no longer constant. It was inflammatory response to biotoxins and waxes and wanes depending on both external and internal exposure. I don’t recall pain from things touching my skin. Mine was more of a burning inside my tissues. I literally felt toxic.

I also had burning skin with the onset of my Lyme symptoms that was not mold related. I could feel heat coming out of my skin and couldn’t stand for anything to touch my chest or back. It felt like steam was coming out of me, like a bad sunburn except the burning was from the inside out instead of the outside in. It was probably bartonellla or Lyme.

Post Edited (WalkingbyFaith) : 5/14/2020 6:26:04 PM (GMT-6)

I have had burning and stinging sensations all over my body - very distracting, very scary. Sometimes it felt like being stung by a bee in one spot, and other times the sensation was more widespread. Hurt to the touch, odd temperature sensations, etc. A few times, I felt like there were ants made of fire crawling all over my head and neck for days. When the sensation is in my fingers and feet, it tends to involve some stiffness (almost paralysis) as well, like my nerves aren't carrying the signals as well as they should because they are too busy hurting and being weird. Sometimes I'd lose the ability to sense temperature, and I'd have to have someone else test my bath water to make sure I wasn't burning myself. Sometimes areas would go numb - usually fingers, toes, or my upper lip. POTS (severe tachycardia when upright) and gastroparesis flare along with these symptoms as well. This has come and gone for me, mostly flaring when I am having a cytokine storm, such as following a virus or herx.

The therapies I mentioned in my earlier post have resolved this for me.

I forgot to mention that DNRS also helps to regulate the immune and nervous systems via limbic system retraining. This helped me a great deal as well.

I have been referred to neurologist Peter Novak in Boston for SFN evaluation because three LLMDs believe that I have it, but I have not kept the appointments. I am not interested in the testing process because I feel like for now my symptoms are well-managed, improving, or resolved. A few Lyme friends have seen him for POTS and all have been diagnosed with SFN after his testing procedures. (I suppose it's more common than people think?) Of the people that I know (purely anecdotal, I realize) most were given the option of IVIG but tried other therapies first, which helped. Not sure how much people's insurance coverage had to do with that decision, but I have heard that IVIG can be prohibitively expensive, unfortunately, so maybe that's why they didn't opt for IVIG.

Thanks for the information about Mary Ruddick, dcd. Her website indicates that her practice uses therapies that focus on the limbic system, nutrition, and mast cell stabilization to help people reverse autoimmune disease and other issues (including Lyme). I could not find information about SFN specifically on her website, but it's interesting to know that she's well-regarded in the SFN world. There must be some overlap and/or interplay among all these issues.

dcd- Have you ever had a tumor necrosis factor blood test (TNF) for various autoimmune?

You dont hear about this much at all, never here it seems, which is why Ive never done it but did think about it.