Curious if my story rings any bells with others?

[kangaSue]

The only way that HBOT would fail to deliver oxygen to narrow capillaries is if red blood cells or some other factor were somehow blocking the blood flow completely in the narrowest blood vessels.

Prolonged ischemia of any sort results in significant changes in the microvasculature that interferes with normal blood flow. When arteries are occluded, detrimental changes occur in the capillaries and arterioles. After relief of the occlusion, blood flow to the ischemic tissue may still be impeded in a phenomenon known as no reflow, something that has been demonstrated in studies into heart, brain, skin, skeletal muscle, intestinal tract and the kidney.

The exact mechanism is uncertain but it is known to start during the ischemic period and then increases during reperfusion. Lactic acidosis would be a sign of this microvascular ischemia but the the liver is exceptionally efficient at clearing this from circulation.

Ischemic pre-conditioning or post-conditioning has been shown to be a beneficial conditioning tool whereby a blood pressure cuff is inflated (I think it was to no more than 50 mm Hg above your normal systolic) and deflated for 3 repetitions of five minute duration intervals. Or you could try nitrate vasodilators which aid in opening up peripheral arteries.

 

[kangaSue]

I switched to my old blood pressure medication to improve circulation. I also began a baby aspirin and L-arginine also to ease blood flow. My severe awakening symptoms almost immediately stopped or were reduced to just feeling ill in the morning similar to my 10 years of history. But why? There must be some kind of underlying pathology causing either poor flow, poor O2/CO2 exchange with my cells or something along these lines.

Microvascular ischemia could explain this too. L-arginine boosts NO production which aids in vasodilation.

 

[Hip]

Lactic acidosis would be a sign of this microvascular ischemia but the the liver is exceptionally efficient at clearing this from circulation.

Lactic acid levels are raised after exercise for a longer than normal period in many ME/CFS patients; but according to Myhill et al's energy metabolism defect theory of ME/CFS, this is due to mitochondrial dysfunction (see the section entitled "Sarah Myhill et al's Theory of PEM" in this post).

Shortage of oxygen to the tissues I think would tend to mimic mitochondrial dysfunction, because mitochondria use oxygen to create energy, so I guess lack of oxygen to the mitochondria could have similar results to the mitochondria themselves being defective.

In either case, the body has to increasing rely on a non-mitochondrial source of energy, namely anaerobic glycolysis, which takes place in the cytosol of the cell, not the mitochondria, and can function independently of mitochondria.

However, with anaerobic glycolysis, you get a build up of lactic acid, because lactic acid is a by-product of anaerobic glycolysis.

Or you could try nitrate vasodilators which aid in opening up peripheral arteries.

Or you can use carbon dioxide gas to potently vasodilate the blood vessels of the brain and body.

CO2 is particularly good at dilating cerebral blood vessels.

A few years ago I was doing some experiments (see this post) with breathing in gulps of pure CO2 gas, with the idea that the potent cerebral vasodilating effects of CO2 might remedy the reduced brain blood flow found in ME/CFS. It is easy to make pure CO2 gas, just by mixing vinegar and bicarbonate of soda (baking soda) in a plastic bag with some water, and then breathing in a gulp of the CO2 from the bag, athough I am not sure if this is safe to do (I did it anyway).

I observed no benefits from taking quick gulps of pure CO2, in spite of its potent dilating effects on brain blood vessels (and the blood vessels of the body), which again suggests that (at least in my case), ME/CFS does not involve a reduced oxygen supply as a result of narrowed blood vessels.



I wonder if breathing occasional gulps of CO2 might help your chronic idiopathic gastroparesis condition, kangaSue? Although I am not sure how safe it is. The original write up of my CO2 breathing experiment is here.

There is also some discussion here by medical students about the vasodilating (and sometimes vasoconstricting) effects of high CO2 levels (hypercarbia).

 

[kangaSue]

I wonder if breathing occasional gulps of CO2 might help your chronic idiopathic gastroparesis condition, kangaSue?

I hadn't heard about trying CO2 breathing before so it was interesting to find someone saying using the Buteyko breathing technique has improved on their gastroparesis symptoms.
http://diabeticdharma.com/104/
[Like any muscle, the pylorus will relax when carbon dioxide (CO2) levels get high enough. Breathing through the nose limits the amount of CO2 exhaled, thus helping relax the entire gastrointestinal tract. A 1995 Mayo Clinic trial, for example, found a direct connection between low CO2 levels and irritable bowel syndrome. My own digestive problems of nearly 30 years, have all but disappeared thanks to breathing retraining.]

There's some studies around to show that breathing CO (carbon monoxide) also helps with gastroparesis symptoms and the thought of using my exhaust emissions have crossed my mind before, but that was with a more permanent solution in mind if the worse came to the worst.

 

[Hip]

I hadn't heard about trying CO2 breathing before so it was interesting to find someone saying using the Buteyko breathing technique has improved on their gastroparesis symptoms.

Yes, it was my own idea, which I thought up after I reading about how CO2 is a potent dilator of blood vessels.

I have done CO2 breathing on perhaps 30 different occasions now. I have not had any ill effects, but I still don't know if it is safe or not. It seems like a more powerful or more immediate version of Buteyko.

I perform the CO2 breathing using a large food bag, in which I make around 1 or 2 liters of CO2 gas, by the reaction of 1 heaped teaspoon of sodium bicarbonate powder with vinegar (or with citric acid powder). Then I breath in around a quarter lungful of the CO2 gas from the bag, and hold it in. Within around 5 seconds or so, you feel quite lightheaded, and feel that you might pass out if you do not quickly exhale the CO2, and breath in some fresh air and oxygen. So at this point I breath out the CO2, back into the bag (for later re-use), and then quickly take in several lungfuls of air. This then immediately fixes the lightheaded feeling, and the feeling that you are about to pass out.

Then I rest for around 1 minute, and repeat the above process. This I do around 5 times. I do notice some mild improvements in cognition that last for 3 or 4 hours after the CO2 breathing, but these are nothing to write home about.


I wonder if say 0.25 to 0.5 liters of CO2 gas could be administered rectally, and left within bowels, where it might perhaps work locally to dilate the blood vessels of the intestines?

 

[kangaSue]

@Hip At least it sounds a lot safer than breathing CO. I'll give it some serious thought.

 

[gregh286]

Yes, it was my own idea, which I thought up after I reading about how CO2 is a potent dilator of blood vessels.

I have done CO2 breathing on perhaps 30 different occasions now. I have not had any ill effects, but I still don't know if it is safe or not. It seems like a more powerful or more immediate version of Buteyko.

I perform the CO2 breathing using a large food bag, in which I make around 1 or 2 liters of CO2 gas, by the reaction of 1 heaped teaspoon of sodium bicarbonate powder with vinegar (or with citric acid powder). Then I breath in around a quarter lungful of the CO2 gas from the bag, and hold it in. Within around 5 seconds or so, you feel quite lightheaded, and feel that you might pass out if you do not quickly exhale the CO2, and breath in some fresh air and oxygen. So at this point I breath out the CO2, back into the bag (for later re-use), and then quickly take in several lungfuls of air. This then immediately fixes the lightheaded feeling, and the feeling that you are about to pass out.

Then I rest for around 1 minute, and repeat the above process. This I do around 5 times. I do notice some mild improvements in cognition that last for 3 or 4 hours after the CO2 breathing, but these are nothing to write home about.


I wonder if say 0.25 to 0.5 liters of CO2 gas could be administered rectally, and left within bowels, where it might perhaps work locally to dilate the blood vessels of the intestines?

Hi hip.
I see clearly that vasodilation helps us but poor arteriole vasodilation I don't think is the root...but by increases in vasodilation helps improve cell aerobic breathing.
Still think there is a glucose/o2 uptake issue going on...or a process like sticky cells etc inhibiting cells reaching microvessels increases in cell surface friction would account for a lot.
God I hope 2017 is the year it all comes to head.

 

[jjxx]

Looking at those numbers, what a proud achievement of Western medicine without a doubt. CFS is such a complex condition, in one of my Western doctors' own words (a Neurologist), CFS affects every system in our body. I consider his words are the very few points I have gained while pursuing Western medicine as a sole salvation. I turn to the East. I don't mean Eastern herbs, acupuncture etc, mostly its philosophy of treating a body as a whole instead of treating each number individually.

With this philosophy guiding, I come up with a recovery plan: I analyze the most affected areas, decide what comes first and next, explore options available from both the West and the East. Within a very very short period of time, I see quite an improvement which I have not been able to achieve for years. I know I still have a long way.

Priority is crucial in recovering from a complex condition. For example, when b9 and b12 deficiency are coexistent, treating one not the other first is a must for successful recovery.

Another example, I show symptoms of sleep apnea too. I almost pursuit treatment in that direction but I hold it off. Somehow, I am intrigued to what underlining cause of this stop-breathing symptom? With a pure luck, well, probably some basic understanding of my own case as well as a little knowledge, I resolve it.

As a patient, I have gained tremendous inspiration from some other patients. Keep in mind, we are all different.

 

[Aerowallah]

After this erudite discussion my comments will seem simplistic, but I'm thinking of the pattern presented in the original post.

Many with CFS including myself complain that morning is the worst and that energy and symptoms improve during the day and accelerate into the evening, even to the point of insomnia. This is usually explained by an inverted cortisol curve. But as I have normal cortisol I looked elsewhere. Someone mentioned there is a detox rhythm or shift that begins prepping around 3pm, peaks while at sleep and then changes over again by 3am, but that the body will take advantage of rest at any time of day and shift the metabolism into detox. Conversely an elevated heart rate shuts down detox, I've read.

At any rate, if feeling lousy, fatigued and inflamed are byproducts of detox (and everyone healthy or otherwise seems convinced of the virtues of drinking a glass of water upon rising) I tried a routine of electrolyte concentration, followed 15 minutes later by diatomaceous earth, and an hour later by RO water. After that I eat, usually fruit for breakfast. As the day progresses and I drink more and more I feel consistent improvement, and this has continued over the last few years through my broader stages of healing, including the original state of feeling worst in the morning which persists. A large or high fat meal at lunch drains much available energy for a couple hours but doesn't bring back the symptoms that peak in the am.

I have also experienced while feeling my worst (with a desire to stay in bed and not begin my routine) frequent urination which feels like diuresis. With these experiences I come to see much through the lens of detox, although my most durable symptom--fatigue--has benefitted most in the longer term from probiotics plus a methylation program of B9 + B12 + cofactors.

 

[femtosecond99]

Them my sleeping trigger of confusion, very high blood pressure, sever burning pain in my hips and shoulders and lesser in my arms and legs plus a headache and need for air. It sure felt like I was hypoxic ( O2 starvation in my cells) and or hypercapnia ( excess CO2). But my pulseoximeter claimed my O2 saturation rarely droped below 90% and my CPAP made no difference yet it claimed it was doing well. So why would I feel hypoxic if my CPAP was providing adequate O2 and my O saturation was ok.

It actually sounds more like anxiety, which is a common symptom of CFS. Do you have a high heart rate? (Or using beta-blockers, which might mask this?) Are you working, and does it make any difference whether you're going to work the next day or you're off work for a few days?

 

[Revel]

It actually sounds more like anxiety, which is a common symptom of CFS.

Is it? Depends upon which interpretation of CFS you are using, I suppose.

I can understand how a person with CFS may develop anxiety secondary to their illness, in the same way as depression can arise. However, to state that anxiety is a common symptom of CFS, in other words that it is an aspect of the primary illness, is a leap too far for me.

Being in the UK, where a BPS explanation of CFS is rife, I was diagnosed with anxiety several times over by ill-informed GPs, who made this assumption purely based on my history of ME/CFS (and also because I was a young female and without a chaperone at the appointments - you know how hysterical these womenfolk can be *sigh*).

This label simply did not fit my experience. For example, why would I regularly have an "anxiety attack" as I stood at the kitchen sink, washing the dishes, even though I had been feeling mentally and physically at ease immediately beforehand? It did not make sense to me, so I continued the search for a more logical cause of my symptoms.

Following a referral at my own insistence to an OI specialist, and appropriate physiological testing, I was rediagnosed with POTS. I have since found that, sadly, I am one of many with a similar tale of being short-changed by the system.

 

[femtosecond99]

Is it? Depends upon which interpretation of CFS you are using, I suppose.

No, I don't think so. ME assocation survey found (I think) 60% of patients had anxiety.

For example, why would I regularly have an "anxiety attack" as I stood at the kitchen sink, washing the dishes, even though I had been feeling mentally and physically at ease immediately beforehand?

I had incredible anxiety attacks sitting doing nothing, with no worries. It's not due to any immediate psychological thoughts, but probably more to do with dysfunction of the ANS and overcompensation by the SNS, or perhaps entirely in the brain. (I had pretty severe other neurological symptoms at the same time).

I don't think we should be afraid of using the word anxiety if that's what it is. Of course, you will feel mental anxiety if it is in fact an anxiety attack. If not then it's obviously not anxiety.

 

[Revel]

ME assocation survey found (I think) 60% of patients had anxiety.

If this was the 2010 survey, there were issues with how the questionnaire was worded and whether or not the patient's GP regarded ME/CFS as a mental health illness or not. I would not rely on this as proof that anxiety is a "symptom" of CFS. It may arise as a response to CFS, but it is not a primary symptom and is not even listed in the CDC definition:

https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

I don't think we should be afraid of using the word anxiety if that's what it is.

I am not afraid of the word, but feel that it is somewhat overused (along with "stress") when discussing CFS.

 

[femtosecond99]

Quoting isn't working properly for some reason...

>If this was the 2010 survey, there were issues with how the questionnaire was worded and whether or not the patient's GP regarded ME/CFS as a mental health illness or not. I would not rely on this as proof that anxiety is a "symptom" of CFS. It may arise as a response to CFS, but it is not a primary symptom and is not even listed in the CDC definition

Well, for me it definitely wasn't a psychological response to CFS, and for you seems to be the same from what you're saying, so that would suggest it's a core symptom for many people rather than just a psychological reaction to having CFS. Other studies also show high levels of comorbid anxiety, e.g.:

http://bjp.rcpsych.org/content/180/1/29.short


>I am not afraid of the word, but feel that it is somewhat overused (along with "stress") when discussing CFS.


Actually, I feel it's underused, as it is a common symptom but people are afraid to use the word

 

[Revel]

for you seems to be the same from what you're saying,

No, I was misdiagnosed. I did not have anxiety. A tilt table test and other physiological procedures proved that my symptoms of rapid heartbeat and syncopal episodes were due to hypovolaemic POTS.

Sorry, but I am not following your thought process here. What suggests that anxiety is "a core symptom for many people", a diagnosis of some form of orthostatic intolerance? I was advised to "salt load" and wear compression garments. I have never heard of this management strategy being used to treat anxiety, but do correct me if I am wrong.

How exactly are you defining "anxiety"?
https://www.cdc.gov/mentalhealth/basics/mental-illness/anxiety.htm

Other studies also show high levels of comorbid anxiety,

"Comorbid" would mean it can be associated with as a separate medical condition, it does not make it a core symptom.

Actually, I feel it's underused, as it is a common symptom but people are afraid to use the word

Why would the CDC be afraid to list "anxiety" if it was a common symptom?

We have clearly had very different experiences of CFS, so let's agree to disagree?

 

[femtosecond99]

How exactly are you defining "anxiety"?
https://www.cdc.gov/mentalhealth/basics/mental-illness/anxiety.htm

"Comorbid" would mean it can be associated with as a separate medical condition, it does not make it a core symptom.

Why would the CDC be afraid to list "anxiety" if it was a common symptom?

We have clearly had very different experiences of CFS, so let's agree to disagree?

I'm defining anxiety as mental anxiety. You know if you have it. It typically has other symptoms such as rapid heartbeat, difficulty breathing, etc, but those may be due to other things as you note. I also had POTS/OI, which may or may not cause anxiety.

I'm not sure why you are so hung up on whether anxiety is a core symptom, due to some psychological trigger, or POTS. I was simply pointing out that many CFS patients have anxiety, and for me it was not a psychological result of having a chronic illness (i.e. it was a core symptom). Let's leave it at that and not second guess who had a worse illness, different illness, etc.

The main reason I pointed out that this may be anxiety is due to the symptom of feeling hypoxic, which seems like it may be anxiety-related (as there was no actual hypoxia).

 

[Revel]

I'm not sure why you are so hung up on whether anxiety is a core symptom

I'm not "hung up" about anxiety being a core symptom, I was merely querying your statement that it is a common symptom of CFS (not according to CDC definition of CFS). Comorbidity is a separate issue.

 

[femtosecond99]

CDC does say it is common:

https://www.cdc.gov/me-cfs/treatment/index.html

 

[Revel]

CDC does say it is common:

Yes. As a comorbid condition, not as a common symptom of CFS!

 

[femtosecond99]

Yes. As a comorbid condition, not as a common symptom of CFS!

As I pointed out earlier, many patients definitely don't have comorbid anxiety/depression with CFS, it is a core symptom. The CDC is really just speculating that the anxiety/depression is the result of having a chronic illness. For myself and many severe patients, the anxiety/depression came on suddenly and did not seem to be comorbid. How do you prove the difference?

I think the CDC is really just speculating that is a result of having a chronic illness.

Anyway, regardless of whether the anxiety is comorbid or part of the illness itself, it seems to be common with CFS, and should be addressed.