Discussion in 'XMRV Research and Replication Studies' started by Rrrr, Sep 25, 2010.
interesting. i have been finding coffee helpful lately.
Hey Rich, I was going to say I thought that Dr. Hyde thinks there is a blood vessel disorder or disease going on, but I didn't understand whatever it was I read from him. But now I have you to ask! What is vasculitis and what is low capillary perfusion?
I have NMH. Sometimes when I am overtired and working my brain too hard--can be sitting down, no standing necessary-- I actually feel the blood circulating in my brain, sort of sloshing. I know this is a sign of being overboard with strain.
I am currently reading up on the vasoactive neuropeptide theory of CFS. These chemicals regulate blood flow, and are tied into the immune system. They can also disturb sleep. I may have more to say later, but the point is that this is a very complex situation, and we still don't have all the facts. This topic is being investigated by a research group at a local university, but I missed out on being a subject because I was housebound at the time of the first public presentation for potential subjects.
I too find coffee helps, but not very much. I have never had problems with coffee, and almost never feel like I have had too much - my response to caffeine seems to be attenuated. What really sets my brainfog off is trans fats.
trans fats? yummy!
Vasculitis means inflammation of blood vessels. Capillary hypoperfusion means that there is not enough blood flowing through the capillaries. These can be connected, because when blood vessels are inflamed, they are not able to carry as high a blood flow as normal.
Otis, I take Co Q-10 primarily for energy. Brainfog isn't a big issue for me any more, unless I am in a moldy place and am feeling poisoned. Then it comes back. I think Co Q-10 could help brainfog by increasing circulation to the brain.
My understanding is that Co Q-10 is an antioxidant that primarily helps the heart. So if it is an antioxidant, it is probably pretty safe to take larger quantities of it. One thing I'm not sure of is whether Co Q-10 is one of those supplements where the quality matters. It might be. I buy the brand made by Enzymatic Therapy, because I trust their quality, but it is expensive.
I'd been taking the usual recommended doses that people with ME/CFS take, 200-300 mg a day. Then I heard about a local doctor who prescribed 1200 mg/day to a patient with depression. It apparently lifted her out of the depression. So I thought, geez, if she can take that much, I think I'll try increasing my dose to 400 mg/day.
Every time I increase the dose, I get a bump of energy, but then the effect gradually wears off. So I speculate it might take a big increase all at once to cause a big noticeable effect.
Wow, congratulations on getting your brain back. Did you accomplish this by working with a doctor or just trial and error on your own? Or both? If a doc, was it a naturopath, MD or ??? In 20+ years of CFS, I've not been able to find a decent doc.
Cognitive dysfunction is probably my worse symptom. I've been able to find "work-arounds" for most other symptoms, including PEM, but difficulty with concentration, narrow focus, word recall, memory and doing anything "new" that takes more than just thinking in background (like driving) keeps me disabled. I rarely function at 75% cognition, usually am at 40-50% and often cannot focus enough to read.
I've tried most of the supps you've listed, but have never found anything close to the "magic combo".
BW, I had no real success on my own. Just trying things and not knowing good doses and brands. At first, I had a integrative doc. in Cal. Years ago. He is the first doctor to know ANYTHING about CFS, I had seen many. He gave me great blood tests. My B-12 level was AWFUL I then saw a nutritionist that is a PHD in Fibro and CFS. SO SMART!!!! He was my hero! He worked with a doctor and I got B12 injections and my life changed. Vertigo slowly stopped. I felt better, I was bedridden with vertigo for a while. I took other things with him. I had to move away just two years later. It was so hard. Took several years to find a new doctor.
I work with two integrative doctors now. Dr. Dzugan (you can google him) works with my doctor. My CFS doctor had great results working with him for patients so she told me I could try. She had been helping me with CFS for several years, but then POTS hit. I was too sick to see her, four hours away. NO doctors near me knew what was wrong. I live in a very large city known for it's doctors... I soon got good enough to go see my CFS doc. Then she was able to help my POTS. NIGHTMARE. That is my main problem now. I have supplements helping THAT too!
Anyway, yes, I have two MD's. Integrative doctors. VERY knowledgable about supplements. Good blood tests every four months or so. We are watching my vit. D go up, Epstein Barr go down and hormones are balanced at LAST.
I just started Choline. It is good for me too. I really have no fog at all. You do need to find good help for supplements. I cannot tell anyone what and how much to use. We are all different with different needs. I needed CoQ10 badly. Some people do not. I had multiple things I needed and I think a lot of people are like that. Not just one or two things.
hi, i'm also very impressed that you got yr brain back and a these great things are happening to you now in terms of your labs and symtoms. great!
i'm a little confused by yr post tho. are you saying that the key to yr recovery was working with dzugan? and that dzugan essentially advised yr doctor? or was your own primary care doctor a large part of the reason why you are doing so well now?
separately, i went to dzugan's website and can't tell where he is located... can you tell us?
I see that Dr. Dzugal has helped many with migraines!! Do you have migraines too Sally?
I feel a raise in energy from CoQ10 also, but I take the more bio-active form of it which is Ubiquinol (I use the Inno-vite brand). You can use a much lower dose of this more concentrated supplement but I forget what the ratio is--half, a third? CoQ10 is not just an anti-oxidant, it improves the ability of the cells mitochondria to carry oxygen, so it is increasing the oxygenation of our bodies and brains. That is where the energy bump comes from.
My understanding is that the research group you mentioned is not also looking at melanocyte stimulating hormone (MSH). I think this is unfortunate. Dr. Shoemaker's research has found that folks with low vasoactive intestinal peptide (VIP) also usually have low MSH. MSH and VIP perform many similar functions (assist with sleep, digestion, neuroprotection, etc.)
Co Q10 is for the heart also. If your heart is needing more you really get a lot of help from it. Helps in many ways at the correct dose.
GlenP, I used to have serious migraines for YEARS. Doctors and OBgyn's were CLUELESS! What a shame. I had them several times a week and they ruined vacations, family get togethers, and daily life. I threw up constantly. When you have the pain of a migriane and throw UP, it is TORTURE! I cannot take med. for pain or for migraine, like Triptans.
ALL I needed was to get the hormones balanced and the correct kind. I am SO happy to have him helping me. They call me monthly and I report how I feel online. They have great blood tests. I am SO happy to be free of migraines. Yes, I had even forgotten about that!
Thanks, Sing! I should try some Ubiquinol.
I took Co-Q-10 on and off for years and didn't notice a thing, until I switched over to the Ubiquinol form.....now that I could feel the difference.
Brain fog has always been a major symptom for me and since the symptoms seem so much like an inflammation, I have basically believed it to be a CNS infection and the immune response to it (Cytokine storm on the brain). Brain Spect scans should show vascular changes, yet mine was normal.
As far as causes of vascular changes that may cause some of our symptoms....I have believed it to be a CNS viral infection (viral encephalitis) = HPA malfunction = altered Autonomic Nervous System malfunction = altered vascular function. But some of these other ideas are intriguing, especially xmrv in the vessel walls. Maybe Dr Singhs postmortem studies will give some answers on this.
My daughter had brain fog for a while but it went, now afew years down the line it has suddenly come back. This couldn't have come at a worse time for her with exams coming up.
She only takes 30mg Q10 so I think I should increase that dose having read through this thread, but is it more effective to be taken in several doses throughout the day, or is just one a day good enough?
She already takes 250mg acetLcarnitine, is there any thing else that may help her?
My brain fog shifted to instead having severe headaches, when I got worse.
I also get peculiar, sharp, precise headaches when trying to do complex mental tasks, like maths, so much so that I gave in on such ages ago (And I was a straight A maths/science student)
I find more intuative, "art" stuff less troublesome, but am also losing my once extremely broad lexicon, sigh
from this I would think that certain PARTS of the brain, AND/OR, ways the brain actually works in a complex fashion, are affected
I have this same grievous difficulty. I never realised how much of my "personality" was expressed through my vast and colorful vocabulary. Another loss chalked up to Team M.E.
Weirdly, I will forget really simple words, but will remember them, say, in french; I'll have to say something like, "You know, the big yellow fruit, much bigger than an orange, it's a little bitter" all the while in my head I'm thinking "pamplemousse" unable to come up with "grapefruit" for the life of me.
Come to think of it grapefruit is totally nonsensical as far as that fruit name goes so I'm giving myself back a point on that one
I do notice, though, that the brain fog gets immediately and remarkably worse with any kind of toxic stressor, like the chemicals in a store with new clothes or furniture,
perfume, cleaning products, deisel fuel exhaust etc. Also very bad with too much EMF.
I recently did an experiment with turning off Wifi and hardwiring my computer (lovely decorative touch, the 50-foot ethernet cable snaking through the hallway) and I have to say I can spend more time without brainfog/exhaustion setting in with the Wifi off.
Here's something I've been taking for more than 20 years for brain fog, it's helped a lot with my ability to recall words (pamplemousses, etc...), thoughts, actions initiated then forgotten in mid-course. It's easy to find and inexpensive.
DMAE-H3 (Twinlabs)...I take 30 drops each day. $12 in stores, I'm getting it for around $7 on the internet, including shipping, when I buy 6 bottles.
It's best taken with two other items, B-5 and Phosphatidyl Choline. The B-5 is supposed to act synergistically with the DMAE.
I take B-5 500 mg and non-GMO Lecithin Granules 1-2 tbsp (NOW Foods). The Lecithin is a good source of Phosphatidyl Choline and is cheaper than using straight Phosphatidyl Choline (I originally used the Country Life Phosphatidyl Choline in caplets or capsules, I forget which).
I think you can tell within a week or two if the DMAE-H3 is helping, at least that's how it is with me when I stop taking it for a while.
The cause of the abnormal circulatory control in CFS could be myriad and as far as XMRV is concerned seem highly speculative.
There are a number of vasoactive peptides and other substances that can be affected by chronic inflammation:
Assymetric Dimethylarginine - competes with endothelial and more importantly neuronal nitric oxide bioavailability implicated in Raynauds Syndrome
Hydrogen sulfide - small artery vasodilator that agonises NDMA receptors causing increased 'sensitisation'
Calcitonin gene related peptide - potent inflammatory vasodilator implicated in migraine
substance P - pain regulator, inflammatory marker and potent vasodilator
En1 - potent vasoconstrictor
Angiotensin II - impaired catabolism has been demonstrated to cause reduced neuronal nitric oxide availability, parasympathetic withdrawal, sympathetic excess, low blood volume and POTS in a subset of patients.
TNF alpha - implicated in CFS already and a potent vasoconstrictor.
You can also try a Google Site Search
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