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People with ME/CFS can have hypervolemia and not low blood volume

halcyon

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And the list halcyon gives does not actually look like vagus nerve failure to me. Autonomic, mostly yes, but not specifically vagus failure. (Tinnitus is as far as I know cochlear nerve, not autonomic.)
I guess I don't understand the distinction. Aren't the neurons that project the vagus nerve autonomic? Aren't they involved in regulation of heart rate/blood pressure and digestive processes? Perhaps failure isn't the right word, more like dysfunction? We seem to have an idea of what vagus nerve stimulation does, as well as transection, but it's unclear what the effect would be of a chronic infection in the neurons that project the nerve. I think VanElzakker’s theory is interesting, especially in the context of enterovirus, but I don't think it's enough to explain the entire disease. Not every patient has an enterovirus infection. Some patients don't have any signs of autonomic dysfunction. I think it's folly to believe that we're going to find one single theory to explain what's going on in every single patient.

Obviously the vagus nerve only enervates the ear canal and not the inner ear. I included it in that list because there may be some association between the vagus nerve and tinnitus as the NIH is conducting clinical studies on the use of vagus nerve stimulation to treat tinnitus.
 

lansbergen

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My tinnitis was very bad and when I was at my worst it was always present. It disappeared years ago and did not come back but I still have some noise sensitivity.

I notices a strange thing happen sometimes, Suddenly I get a short loud sound in my head. The only explanation I can think of is that: an obstucle is removed and the neurons fire like mad.
 

halcyon

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My tinnitis was very bad and when I was at my worst it was always present. It disappeared years ago and did not come back but I still have some noise sensitivity.

I notices a strange thing happen sometimes, Suddenly I get a short loud sound in my head. The only explanation I can think of is that: an obstucle is removed and the neurons fire like mad.
Exploding head syndrome?
 

lansbergen

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I would not call it that but I guess others could.
I do not see why I should call it a syndrome. It is nothing more than one would expect with a loud bang nearby.

I also can not see what it has to do with poor sleeo. I sleep like a baby and the last time it happened when I was wide awake working on the computer.
 

JBB

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Not read the whole thread BUT:

I have seen people on here say POTS normalizes after treatment of pathogens. I don't know which ones specifically but it's surely not out of the realms of possibility that EBV (or common co infections when EBV is present) could cause this.

I have Lyme (PCR +ve) and one of my main symptoms is ANS dysfunction. This causes all sorts of other trouble of course. We will never create an all encompassing theory but if one pathogen can create ANS dysfunction then why not another? Where is the proof AGAINST it? Anyway will see if ANS dysfunction lessens after treatment, I'm almost certain it will.

@Gingergrrl what to do about viruses. I agree Valcyte / Valtrex are crappy on the liver and seriously expensive. I think I would look into natural antimicrobials certainly as well as these or instead of. A good Naturopathic doctor may be able to help. Of course it could be a result of suppressed immune system but my feeling has always been that pathogens are also suppressing the immune system so it's a vicious circle. I think it's going to be pretty difficult for someone with pathogen induced CFS / ME to recover without antimicrobials.

Just my 2 cents.

JBB
 

Gingergrrl

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@Gingergrrl what to do about viruses. I agree Valcyte / Valtrex are crappy on the liver and seriously expensive. I think I would look into natural antimicrobials certainly as well as these or instead of. A good Naturopathic doctor may be able to help. Of course it could be a result of suppressed immune system but my feeling has always been that pathogens are also suppressing the immune system so it's a vicious circle. I think it's going to be pretty difficult for someone with pathogen induced CFS / ME to recover without antimicrobials.
@JBB Without re-reading the whole thread, I don't remember exactly what was said on earlier pages. But to clarify, I am in no way against anti-virals and have been taking Famvir for four months of a six month trial. Prior to this, I worked with an ND and took all kinds of natural anti-virals including Monolaurin, Maitake Mushroom, Zinc, Vit C, etc, and now also take Epicor. I agree that it would be hard for someone like me with EBV re-activation induced ME/CFS to recover without some kind of anti-viral. That is just my opinion of course!
 

JBB

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@JBB Without re-reading the whole thread, I don't remember exactly what was said on earlier pages. But to clarify, I am in no way against anti-virals and have been taking Famvir for four months of a six month trial. Prior to this, I worked with an ND and took all kinds of natural anti-virals including Monolaurin, Maitake Mushroom, Zinc, Vit C, etc, and now also take Epicor. I agree that it would be hard for someone like me with EBV re-activation induced ME/CFS to recover without some kind of anti-viral. That is just my opinion of course!
Sorry if I implied you were against anti-virals - I didn't mean that! Being in the UK most anti-virals are out of the question due to expense anyway for me, but it seems that they take a long time to work and perhaps because they target specific viruses (i.e herpes viruses) have somewhat limited benefit. Dr Lipkin was recently talking about novel viruses. I wonder if the anti virals we have at the moment are hitting some of these. That is why I think also taking broad spectrum supps is important.

This is controversial but I would be thinking even more alternative like high dose iodine / MMS. These are / were both used in the water system at low dosages in some countries as a water purifier so they are certainly effective at killing pathogens. Questions is whether one is willing to take them internally. I personally had a VERY strong herx from doing iodine (have to be very careful with thyroid of course, controversial like I said and not for everyone). There are other options I think. I have just been prescribed a comprehensive essential oil protocol taken internally for Borrelia and co's (this is following IV ABX). I don't know how effective it is for viruses though of course. My point really is to take things which will have effect against any microbial action that may be going on.

I'm sorry you have tried those things without success. Would make me think there are infections you may be missing perhaps. Again just guessing for what it's worth.

All the best,

JBB
 

Gingergrrl

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@JBB

Sorry if I implied you were against anti-virals - I didn't mean that! Being in the UK most anti-virals are out of the question due to expense anyway for me, but it seems that they take a long time to work and perhaps because they target specific viruses (i.e herpes viruses) have somewhat limited benefit.
I didn't think that was what you were saying and I didn't go back and re-read the thread, I just wanted to clarify. The generic versions of the anti-virals here are very cheap here but ones without a generic are insanely expensive. I have been taking the generic of Famvir for about four mos in my case to target EBV and VZV.

Dr Lipkin was recently talking about novel viruses. I wonder if the anti virals we have at the moment are hitting some of these. That is why I think also taking broad spectrum supps is important.
I wonder about the novel viruses too but no idea how one would test for these? I have been taking Monolaurin since about Feb in the hopes that it is targeting everything from a natural perspective.

This is controversial but I would be thinking even more alternative like high dose iodine / MMS
I was advised against iodine b/c I have Hashimoto's and I don't actually know what MMS is?

I have just been prescribed a comprehensive essential oil protocol taken internally for Borrelia and co's (this is following IV ABX). I don't know how effective it is for viruses though of course. My point really is to take things which will have effect against any microbial action that may be going on.
What types of broad spectrum or comprehensive anti-microbial things are you taking? I apologize if you already stated it and I missed it!

I'm sorry you have tried those things without success. Would make me think there are infections you may be missing perhaps. Again just guessing for what it's worth.
I think it is still too early for me to determine if the Famvir and Monolaurin (plus a bunch of other stuff) have been a success or possibly how much worse off I might be right now without them. I am doing a six month trial and then re-assessing with my doctor.

All the best to you as well.
 

JBB

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Novel viruses...well you can't test for them which is the problem. But (and this is just my opinion) you may still be able to treat them with broad spectrum antimicrobials. Sounds like a plan with the Monolaurin. That will only target viruses in my understanding though. Perhaps something that will kill other kinds of pathogen as well would help?

Yes understand about iodine re Hashi's. That's a shame. Miracle Mineral Solution (MMS) is chlorine dioxide once mixed up - some probably say it's BS but I personally know two people who took it. One of them swears that it helped a lot for Lyme (along with a few other interventions of course). It is used as a disinfectant in German water supply and approved for use on food by the FDA but in very small quantity, have to be very careful taking this and make sure you do your research if it's something you consider trying. I have some but haven't yet tried it so can't give you a personal experience. I think Wayne on PR has tried it and there is a thread on it. Other controversial things like Colloidal silver also come to mind. Might be worth mentioning that 4 cloves of freshly juiced garlic made me herx like a bull too and garlic is antiviral (don't know how powerful).

I am taking a mix of essential oils and herbs given to me by my LLND but these are specifically to target Borrelia, Babesia and Bartonella. So I'm not sure they would be any help against viruses. Combination of about 7 essential oils + herbs...quick google of oregano oil, might be worth a read: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3768712/

Yes I agree, takes time and may be too early to tell.

Sorry I'm not really being much help with specific things, just throwing around ideas for you to look into :).

Best wishes,

JBB