Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

[andyguitar]

BTW Verrillo suggests this medicine in her book on CFS.

Thats interesting to know.

 

[raghav]

I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.

 

[raghav]

There are a number of peripheral vasodilators. They include, cilostazol, moxisylyte, naftidrofuryl, pentoxifylline and nifedipine. These medicines are available as tablets and capsules and come in various brand names. Inositol nicotinate and pentoxifylline are not considered effective for PAD

 

[raghav]

Thats interesting to know.

http://cfstreatment.blogspot.com/p/cfs-treatment-guide-1st-edition_7.html

Under Treatment options you can find Pentoxifylline

 

[Hopeful2021]

I think Cort's article mentioned the IgG removal too, at about 20,000 USD if I remember right. Pricey, but inspiring. Although if my memory serves me right, they assume it isn't the antibodies? I guess the cell trend test didn't reflect the sickness level of the patient in the way that would have explained that. I don't know though, poor understanding and poor memory. Anyway, that article grabbed my attention in a big way. I actually texted a portion of Cort's article to my daughter yesterday, here is the exact quote I sent her:



I've had my doctor's office take me on "walks" twice (about 1-2 blocks), and I get out of breath to where I can't talk any more, but my blood ox always hold steady at 97 or 98%. So IMHO it could be either thick blood, or narrowed arteries. Either way, it could explain much. Not sure if it explains some of my earlier muscle symptoms (I wound up doing a bit of searching yesterday looking for symptoms but couldn't find my specific muscle issue) but worth having a doctor try to put the puzzle pieces together.

Hopeful!

@Strawberry
Also gas diffusion is a cell by cell impact of hypoxia so yes it can be vasicular, but it can also be at cellular level to due to a few things.
@MonkeyMan
There's also monoclonal antibody efforts and those are most interesting. Therein lies great hope for probably a small category of pwme.
The capillaries can easily be helped and re-invigorated in a lot of people by using a very strong PEMF device. Some pwme can be helped; many cannot sadly.

 

[Hopeful2021]

As the patients were treated not that long ago we will have to wait and see.

The chances might be much better than that as the diagnosis of me/cfs is not that precise, so some of the subjects might not have had it. There is something in the back of my mind about this type of treatment when it comes to how long it lasts. Cant bleeding remember!!

@toyfoof
There's a ton of new research into memory B cells and antibodies and Monoclonal antibodies. In some cases, yes, it is One and Done. But even if it were 2-6 times a year, how amazing that would be.

 

[Hopeful2021]

Theoretically if this were the case, wouldn’t taking nitric oxide help

@nryanh94
I just found out today here in this forum you can home measure ones nitric oxide levels with test strips. Have you measured yours? Do you take aminos to increase yours? I like Kaatsu training and PEMF to increase mine but also have experimented with aminos. I've never measured though so it was all just about feeling and sometimes vascular pump.
Excited to get my test strips and to measure.
Maybe I'll finally stop procrastinating and do a VO2peak (not a max) testing to also track respiratory quotient and NO levels.

Yes so do I.
Considering also how the m3 also regulates insulin and pancreas.funcrion can explain crazy blood sugar spikes...drops and cravings and racing hr post carbs

@gregh286
A lot of what you mentioned though is a pure function of respiratory quotient--- what hormones are allowing you to burn as a fuel mix when you inhale/exhale.
cravings..... well that's the billion dollar question and is a gazillion things. LOL.
Eating frequency is another easy and straightforward way though to regulate insulin. I suspect you know all this though. But in case this helps others who are reading.

 

[Hopeful2021]

I think I found the answer in the paper about the 10 patients who received the treatment (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5854315/)

"3 of these patients had long lasting moderate to marked improvement for 6–12+ months, 2 patients had short improvement only and 2 patients improved for several months following initial worsening."

So $20,000 for a treatment that has a 3 in 10 chance of producing long-term improvement.

@MonkeyMan
Hello. Do you or someone else that you know actually know these ten people in the study? Is it possible to ask them questions?
Thank you for sharing this.
I do think monoclonal antibodies and lots of the research generated for covid19 and other SARs will be greatly helpful for our community in about 2-3 years.
I'd love to hear about any details further of their experiences or to get in contact with this research team.

 

[Hopeful2021]

@andyguitar I'm not sure if these autoantibodies are the same as Dr. Davis's something in the blood or not. As I recall(hopefully) Dr. Davis's tests were done with PMBCs and I just don't know if PMBCs have M3 or B2 receptors to react with autoantibodies. Also, I think I remember someone saying the 'something in the blood" was about the size of an exosome. Again, I don't how the size of exosomes compares to antibodies.

As I understand it, the something in the blood is affecting cellular metabolism (which has lots of unpleasant effects), but this paper is talking about something that affects the blood vessel walls and therefore oxygen delivery (which also has lots of unpleasant effects). The conclusion makes it sound as though the authors feel that PwME have more risk for heart diease than others, based on the blood vessel problems.

@wabi-sabi

just only on your comment about blood vessel walls.... maybe you might like the intro to this video link I'm adding. It briefly goes into the Vasa VASORUM and a tiny bit about vessel walls.... the topic is not ME... but cholesterol and how vessel wall health mechanisms have nothing to do with the current dogma surrounding "scary" cholesterol (eye roll ).

 

[Hopeful2021]

I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.

@raghav
If reversing your diabetes is an option, there's a great published two year study that shows it common occurrence among participants- The Virta Study. It usually takes 3 months and it's vital to monitor and adjust all medications especially insulin if that's the level of T2.... T1 has truegrit study on how best to manage T1.

 

[MonkeyMan]

@MonkeyMan
Hello. Do you or someone else that you know actually know these ten people in the study? Is it possible to ask them questions?
Thank you for sharing this.
I do think monoclonal antibodies and lots of the research generated for covid19 and other SARs will be greatly helpful for our community in about 2-3 years.
I'd love to hear about any details further of their experiences or to get in contact with this research team.

@Hopeful2021 I'm afraid I don't. I just found this paper online. I'm very sorry, wish I could help!

 

[Hopeful2021]

@Hopeful2021 I'm afraid I don't. I just found this paper online. I'm very sorry, wish I could help!

@MonkeyMan
Oh. Okay. Bummer.
How extraordinary if you did though.
thank you for your reply.
I'll keep searching.

 

[MonkeyMan]

@MonkeyMan
thank you for your reply.

@Hopeful2021 You are most welcome.
What is most interesting to me in that article is the statement that "3 patients had a sustained improvement of fatigue and several symptoms for at least 12 months." Wow!

 

[Hopeful2021]

@Hopeful2021 You are most welcome.
What is most interesting to me in that article is the statement that "3 patients had a sustained improvement of fatigue and several symptoms for at least 12 months." Wow!

@MonkeyMan
Have you had periods where fatigue wasn't an issue? I'm very thankful for mine.... most are just for parts of the day.... sometimes for a week, but mainly 3-4 days.

 

[MonkeyMan]

@MonkeyMan
Have you had periods where fatigue wasn't an issue? I'm very thankful for mine.... most are just for parts of the day.... sometimes for a week, but mainly 3-4 days.

@Hopeful2021 The only time I am truly fatigue-free and clear-headed is when I use medical cannabis. But the cannabis has the unfortunate side effect of then interfering with my sleep -- it's like my brain is then on fire for days. I'm experimenting now with NSAIDs like Longvida curcumin to see if they counteract the sleep issue. Feel free to PM me if you'd like to discuss further.

 

[kangaSue]

I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.

Diabetes is one of a number of chronic conditions that have a deficiency in nitric oxide synthase among the pathology findings (nitric oxide is generated endogenously by NO synthases). Interestingly, nitrates have been found to help with neuropathic pain in diabetics.

https://www.ncbi.nlm.nih.gov/pubmed/29565948 A Randomized, Double-Blind Study of the Effects of a Sustained Release Formulation of Sodium Nitrite (SR-nitrite) on Patients with Diabetic Neuropathy. (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665823/ The effect of transdermal nitroglycerin on pain control in diabetic patients with peripheral neuropathy (2015)

 

[Hopeful2021]

Diabetes is one of a number of chronic conditions that have a deficiency in nitric oxide synthase among the pathology findings (nitric oxide is generated endogenously by NO synthases). Interestingly, nitrates have been found to help with neuropathic pain in diabetics.

https://www.ncbi.nlm.nih.gov/pubmed/29565948 A Randomized, Double-Blind Study of the Effects of a Sustained Release Formulation of Sodium Nitrite (SR-nitrite) on Patients with Diabetic Neuropathy. (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665823/ The effect of transdermal nitroglycerin on pain control in diabetic patients with peripheral neuropathy (2015)

It's kinda better to just get rid of being diabetic ... the insulin causing heart disease and the deficiency in NO ... why keep a disease that's reversible ? In this community, we clamor for a cure.

 

[pattismith]

I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.

Do you have Diabetic peripheral Neuropathy?
I just read this paper :


Topical Delivery of Muscarinic Receptor Antagonists Prevents and Reverses Peripheral Neuropathy in Female Diabetic Mice
Corinne G. Jolivalt, Katie E. Frizzi, May Madi Han, Andre J. Mota, Lucie S. Guernsey, Lakshmi P. Kotra, Paul

Abstract
Muscarinic antagonists promote sensory neurite outgrowth in vitro and prevent and/or reverse multiple indices of peripheral neuropathy in rodent models of diabetes, chemotherapy-induced peripheral neuropathy, and HIV protein-induced neuropathy when delivered systemically.

We measured plasma concentrations of the M1 receptor–selective muscarinic antagonist pirenzepine when delivered by subcutaneous injection, oral gavage, or topical application to the skin and investigated efficacy of topically delivered pirenzepine against indices of peripheral neuropathy in diabetic mice.

Topical application of 2% pirenzepine to the paw resulted in plasma concentrations 6 hours postdelivery that approximated those previously shown to promote neurite outgrowth in vitro.

Topical delivery of pirenzepine to the paw of mice with streptozotocin-induced diabetes dose-dependently (0.1%–10.0%) prevented tactile allodynia, thermal hypoalgesia, and loss of epidermal nerve fibers in the treated paw and attenuated large fiber motor nerve conduction slowing in the ipsilateral limb.

Efficacy against some indices of neuropathy was also noted in the contralateral limb, indicating systemic effects following local treatment. Topical pirenzepine also reversed established paw heat hypoalgesia, whereas withdrawal of treatment resulted in a gradual decline in efficacy over 2–4 weeks.

Efficacy of topical pirenzepine was muted when treatment was reduced from 5 to 3 or 1 day/wk. Similar local effects were noted with the nonselective muscarinic receptor antagonist atropine when applied either to the paw or to the eye.

Topical delivery of muscarinic antagonists may serve as a practical therapeutic approach to treating diabetic and other peripheral neuropathies.

 

[godlovesatrier]

Eleutherococcus senticosus (Siberian ginseng) widens blood vessels and increases heart rate (which might help with POTS not sure). I wonder if this narrowing issue is something I have, as I always feel significantly better with ginseng. However I also know that no matter what I take, when my fatigue lifts and with some sort of immune support, my energy levels rise as well. So it's still a complex picture. Maybe issues with blood vessles are another part of things though?

 

[lenora]

I found another really interesting paper by the same person. Can't say I understand all of it, but it sounds very plausible and intuitively like what's going on for me. Take a look at the abstract here:

https://www.sciencedirect.com/science/article/pii/S1568997220300823?via=ihub

I'm a 73 yr. old female who has had ME for probably 35 or more years. I also have Syringomyelia and Arnold-Chiari Malformation (since repaired) and Tethered Cord in addition to other problems. I've had seizures due to eletrolyte imablance that have left me unconscious for 2 days and caused some brain dysfunction. In addition in April of this year I was taken to the hosp. with trouble breathing, cough...which I've had since Jan., a hospital borne infection, was tested for COVID-19 twice & passed both times. I knew I didn't have it, b/c the cough was the only symptom.

As it turns out I had to have 2 more stents (for a total of 5) implanted the next a.m. Due to bleeding problems, I was kept overnight again. I also have very small blood vessels. I suffer from congestive heart failure...severe allergies, a walking nightmare of symptoms for doctors. I skip the small stuff b/c I don't think they can take it all in...even I can't. Also, I suffer from anxiety and/or panic disorder, have had shingles 4 times, 3 right in a row & each attack is the worse than the one prior. Yes, I've had the newest immunizations as has my husband.

In other words, I'm confirmation of both of these research papers. Obivously, I'm a genetic mess and am amazed that I've lived to this age. Pain is my constant companion, and has been for the 35 yrs. or so mentioned. I laugh as much as possible, b/c life should be as light as we can make it. I'm considered a patient who is easy to work with and I get along with all of my doctors. Why am I telling you all this? Well, I'm wondering myself. Like I said, my mind does wander. I did want you to know that there are those of us, who are an older age and have these symptoms. I'll ask my cardiologist about my heart size, just for information sake. Thanks! Yours, Lenora.