Potential linking FM, mast cells, sleep deprivation, food intolerance, exercise intolerance and ME?

Merida

Well-Known Member
@Issie
Thank you for the detailed look at attempted improvement. Yes, the Chiari surgeries are only about 50% effective, so the specialists are trying to figure out who will do well with surgery. No surgery for me. Had 2 invasive procedures and got worse.

I also think dopamine is an issue with me. Have some evidence and a 'feeling' about it from what I know. I did so much searching and reading in the literature over the years - but just exhausted from it all.

Have turned my case ( more or less ) over to my acupuncturist ( of 15 years) who is also a Chinese medicine doc. ( was an orthopedic surgeon in China) He said he can boost my immune system. So, I am trying that - and hoping it doesn't get over boosted and through me into a hyper state - which could happen.

Had a conversation with a very good psychic/medical intuitive. She thinks the basic problem is Epstein Barr. And it could be.

Anyway, sure admire your persistance, and I sure hope it pays off. More hugs.
 

Issie

Well-Known Member
@Merida thanks for the hug.....can't have enough of those! Back to you (((((HUG))))).
It is always a journey and quest for the better "bandaid". At our age, not thinking we will have a complete cure. But better quality of life and being able to keep going and functioning with less pain is a good goal.
I will be adding some information about what I'm doing to help with virus and how that is going later.
I think there are many facets to our puzzles and all are different. We are just high quality, multi faceted diamonds, aren't we. Maybe a little in the rough, waiting to be artisticly discovered and shaped. If we can sort our WHYS, then we may can do something about them.

Issie
 

Merida

Well-Known Member
@Issie - Yes, we are different in other ways. I suspect in ancient times we were the ones that helped the tribe - with certain 'knowing' and foresight and insight. I expect there are wonderful intellectual/other gifts in your family too. My brother was a structural engineer, with Dick corp, and he only had a high school education. He just self taught how to fix earth movers and run giant cement pumpers. Dick Corp sent him around the country to train others. He also has lots of symptoms - has been couch ridden ( age 75). Started suddenly years ago after a virus. But now CDC positive for Lyme - has a pic line.

Anyway, love talking with you. Will try to message you and give you my number. Maybe we can chat some day.
 

Issie

Well-Known Member
Sorry to hear about your brother. Lyme is hard to get tamed. I've been working on it for awhile now.
Thanks for your PM and number. At the moment mostly texting and emails. Talking rather draining for me. But, will keep your number for a better day. Those will come, as I feel I'm slowly improving and finding more answers. In the meantime feel free to PM me, here on the forum, and we can text.

Issie
 

Issie

Well-Known Member
I am using PEA and am off Tramadol and Bentyl for over a month now. PEA helps pain and also moderates glutamate. My sleep has also improved and I'm now dreaming, which I never did before. (It seems to take a little while to build up to be effective. I'm using 2 x 2 times a day. My sis is also using this and find it helping her too.) Tramadol had helped my overactive autonomic nervous system from HyperPOTS and FMS and slightly took an edge off pain. Bentyl helped muscle spasms and IBS. With this supplement, I'm managing (maybe not quite as well, but well enough). I've been much stricter on diet and added a few other supplements I'll talk about later.

(The one I'm using also has lutolin and both these help MCAS too.)

Mirica® - Pea (Palmitoylethanolamide) and Luteolin - Natural Pain Relief - Made with OptiPEA® from The Netherlands - Anti-Inflammatory Supplement - 60 ct https://www.amazon.com/dp/B07365MZLY/ref=cm_sw_r_other_apa_i_eEvNDb3WE7RVN


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394492/

"The effect of palmitoylethanolamide (PEA), an endogenous fatty acid amide displaying neuroprotective actions, on glutamate release from rat cerebrocortical nerve terminals (synaptosomes) was investigated. PEA inhibited the Ca2+-dependent release of glutamate, .......... Based on these results, we suggest that PEA exerts its presynaptic inhibition, likely through a reduction in the Ca2+ influx mediated by Cav2.1 (P/Q-type) channels, thereby inhibiting the release of glutamate from rat cortical nerve terminals.

http://www.druglibrary.org/crl/neurological/Skaper et.al 96 Excitotoxicity_ ProcNat'lcadSci.pdf

" Glutamate stimulates both N-methyl-D-aspartate (NMDA) and non-NMDA receptors. While activation of NMDA receptors has been implicated in a variety of neurophysiologic processes, excessive NMDA receptor stimulation (excitotoxicity) is thought to be primarily responsible for neuronal injury in a wide variety of acute neurological disorders including hypoxia±ischemia, seizures, and trauma."

"Here we report that palmitoylethanolamide, but not the cognate N-acylamide anandamide (the ethanolamide of arachidonic acid), protects cultured mouse cerebellar granule cells against glutamate toxicity in a delayed postagonist paradigm."

https://enacademic.com/dic.nsf/enwiki/11785492

"PEA has been shown to have anti-inflammatory[2], anti-nociceptive [5], neuroprotective[6], and anticonvulsant properties [7]"

https://www.researchgate.net/publication/280908314_Palmitoylethanolamide_reduces_pain-related_behaviors_and_restores_glutamatergic_synapses_homeostasis_in_the_medial_prefrontal_cortex_of_neuropathic_mice

"Palmitoylethanolamide reduces pain-related behaviors and restores glutamatergic synapses homeostasis in the medial prefrontal cortex of neuropathic mice."
 

Issie

Well-Known Member
I have talked about my adding something for virus and it also helping Post Lyme syndrome. There has been question in regard to virus/retrovirus in ME/CFS and many other illness, for that matter.

As many know, I attribute my ME/CFS, FMS and downward health to a vaccine I got when around 8 years old. (Yes, I have had a lifetime of trying to deal with this. But, have managed to have a pretty good life --- despite myself.)

My Functional medicine doc suggested to me an herb that is being used for these things and I had already purchased it before she told me. (Another researcher had tuned me into it already.) I had not started it as it could cause a most horrible rash and I needed to make sure my liver was up to the job of detox before I wanted to attempt it.

Attempt it I have, with no rash. Started out too strong a dose and caused some really bad reflux and not desiring to eat. Have backed off on dosage and started with less dosage and less times per day. Now up to 2 times a day.

Not sure how much this is playing into things, but this along with daily enzymes several times a day.....seems to be swinging me into a good direction.

One thing I have noticed is some lipomas that I have had since my 20s are nearly gone. These were rather large and one a doc felt the need to MRI. Nearly gone. (Since I also have a brain tumor and multiple thyroid tumors-----hoping this is helping those too.)

I feel my energy increasing. Seem to have less weakness. My brain and cognitive function greatly improved. (Again, other things I'm taking affect these things too.)
This is only one thing that may be having an effect. But worth noting.

Here is information on this herb - Lomatium. This company has a good write up about it. Not the brand I'm using however.

https://barlowherbal.com/blogs/blog/the-super-natural-power-of-lomatium
 

Issie

Well-Known Member
A follow up from me......
I no longer need the Velvet Bean.....seem to be balanced out with just Clari T with the brain fog/cognative issues.

And we talked of histamine earlier in this post......here is an update.

I have been off all my MCAS (antihistamines and mast cell stablizer) and POTS medicines (Tramadol and Bentyl) for over 2 months now. I'm following a new approach to MCAS of resetting the H2 receptor with an external cream with histamine in it. I don't have it completely sorted. But am very hopeful. I will post a link to the book and guy who directed me to it.

Mast Cell - Histamine (Immunotherapy With Histamine) | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums

It seems histamine plays a large part in our Autoimmune system, Inflammation and cytokines, Suppressor T Cells for inflammation and even our neurotransmitters.

Also plays a part with glutamate (of which this post has a lot written about). I have thought glutamate may be one huge part of our picture, especially with POTS. And I still think so, but possibly histamine plays an even bigger role. Especially with many of us POTS people having MCAS. And now more and more ME/CFS patients finding this as an issue.

This is definitely worth looking into and more research done!

I have researched much supporting literature of histamine being used effectively for many illness. (ALS, MS, Leukemia, cancer, etc.) I had never heard of it before as a therapy. Its definitely not what we would ever think to do. And not what I had been doing for pretty severe MCAS. I worry to think what my non stop use of about 8 years of antihistamines may have contributed to - taking them, thinking I was helping myself, out of ignorance. And not knowing any other way. They were not being very effective for my symptoms and my brain fog and cognitive issues were getting worse.

It's an experiment in progress.....but I'm very hopeful.
 

Issie

Well-Known Member
Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment.

It's still an ongoing experiment for me. Not there yet......
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top