Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by fresh_eyes, Jan 12, 2010.
* slaps forehead *
But, I thought...beer was...supposed to be good for you!!!
........yes, but not in the quantities you must be knocking back, fresh eyes .....
Hello, everyone. THis is my first post. I wanted to let you know that I recently had a conversation with Mark Roth of the Fred Hutchinson Cancer Research Center in Seattle. He is the scientist who won the MacArthur Genius Award for his work on inducing hibernation in mice, and it was his presentation several years ago that inspired my theory of hydrogen sulfide dysregulation in CFS.
He has decided to test my hypothesis by measuring levels of H2S in the blood and breath. I am thrilled that a person of his caliber is willing to dip his toes into the muddy waters of CFS. He is also extremely knowledgeable about CO2 and the other gases, so let's hope something comes of this.
Low sodium is a little unusual without other electrolyte abnormalities, but can certainly cause fatigue, light-headedness and dizziness. Since you are not likely to get to the root of the problems immediately, try adding salt to your food - sea salt, preferably. I'm still thinking about the low CO2 - What was your Hbg & Hct? Obviously they were not in the abnormal range or you would have mentioned it, but were they in the high range of normal by any chance??
@ Marian: Welcome. That's very interesting. I hadn't heard of Roth, looked up his lab: http://labs.fhcrc.org/roth/ Can you tell us more about your hypothesis?
@ Lily: Thanks so much for taking an interest.
My sodium level has been declining over the years. My hemoglobin is high-ish, 14 (11.5 - 15 = normal range), hematocrit ditto, 41.5 (34 - 44). How do those relate to CO2?
Low CO2 can be associated with hyperventilation and low oxygentation as the other poster stated. And you also stated something earlier (I think) about waking up gasping sometimes..... Over time, low oxygen levels (hypoxia) will produce high hemoglobin & hemacrit levels indicating the bodies attempt to get more oxygen by producing more red blood cells, and thus increasing the concentration of RBCs. Oxygen deprivation is seen in sleep apnea, in altitude sickness, etc. So I was looking for other correlations that pointed to hypoxia/low blood oxygen levels, which is why dysautonomiaXMRV was also asking whether you had arterial blood gases drawn.
Low CO2 can also be associated with kidney diseasse as well as low sodium.......don't panic, as I don't think that is the case at all, but was a creatnine level included in what you had done? Was it a CMP (complete metabolic panel) you asked for?
ETA: how low is your sodium?
Hi fresh eyes,
I'm too knick knacked to think straight, but to follow on from Lily.......
Two pieces of probably useless information: my mother was also told she had low sodium recently, and I asked the G.P about increasing her salt intake. She said salt intake was irrelevant to one's sodium level. Doesn't mean she is right of course. I have learnt to take what a doctor says with a ...........pinch of salt. (Sorry about that....couldn't resist!) :Retro smile: :ashamed:
Secondly, I have been researching hypoxia and CO2 levels because I have experienced a severe three week bout of breathlessness. Again! According to Cheney and others, we have hypoxia, which is likened to altitude sickness. Also, I remember reading that although our arterial O2 levels are normal, the venous O2 levels are below normal. I don't know if that is anything to do with your problems......too tired to look back to check. Anyway, you probably know more about this than I do...
C.G. :In bed::headache:
You are correct C.G., and I am not thinking that FE's low sodium is due to inadequate sodium intake, but adding some salt in the short term could make her feel better. A significantly low sodium has some other root cause and is usually accompanied by other abnormalities. I'd like to look deeper, and my brain too, is moving sluggishly today. And yes, we do seem to exhibit blood chemistries similar to altitude sickness - I have for 10 years since this all began. So we aren't much help, are we I've been waiting for Dr. Yes to give his ideas......
ETA: Actually low dietary intake certainly can be a cause but is not usually the case, and would require rather severe dietarty restriction, which I am assuming is not the case here. Electrolytes are key indicators and abnormalities should be followed up. Before making any assumptions, I'd probably just repeat the lab work. Hopefully they didn't charge you an arn and a leg. When I worked for a health insurance company part of my job was negotiating pricing contracts with labs - and we agreed on $4 for CBC, now the equivilent of a CMP, I believe. Hopefully if you don't have insurance, you are negotiating pricing since you are self-pay. Usually eveyone can negotiate pricing if you have no insurance, but many people don't try. You should try for 40% discount off their pricing.
CG, your "drop attacks" sound like either cataplexy or seizures.....thoguh of course with all the weird things that go wrong in our bodies they could certainly be something else.....just thought I'd mention that, though, to give you something to look into as a possibility
Thank you, Tammie. I had always thought that the 'drop attacks' were some sort of seizure, and perhaps they are. I know that 'atypical' seizures are listed as a problem in M.E. However, the hospital doc told me they could well be caused by a heart problem. As I've 'graduated' from short periods of conscious loss of muscle control to a prolonged bout of unconsciousness and amnesia (hours), I am beginning to wonder whether the problem is neurological and vascular, alothough there is a confirmed heart abnormality associated with it. I'm confused! Another doc says he thinks it's a brain stem problem. Could my wacky symptoms be due to the effects of long-term M.E. (30 years), who knows?
I had a lot of those drop attacks too. I would be stuck on the floor for fairly long periods, not losing consciousness but unable to move. One of the brochures on the site I linked to describes this. The cardiologist who operated on me said the only thing that does this is heart arrhythmia.
I had ECGs done during the "seizures" which showed abnormal impulses that were not the classic epileptic spike and wave. This is the result fo the fact that your heart is not delivering enough blood and therefore oxygen to your brain - your brain goes a bit funny but it is not epileptic.
When you get a real epileptic siezure (which I've witnessed on many occasions!) you either get a twitching or jerking movement in one side of your body, or you lose consciousness completely. If your whole body was involved but you were conscious, it was not an epileptiform siezure. (I spent a week in a hospital ward full of epileptics which gave me a full immersion course in all aspects of epilepsy!)
The easiest way to find out about your heart would be to get wired up to a Holter monitor for 24 hours. It's a gadget like an MP3 player that records your heart like an ECG as you go about your daily business. Any NHS doc can prescribe that.
You're giving such a perfect description of everything that I had, I am convinced you have the same thing.
Athene, You are far better than any doctor I've seen since my major whoopsy in November. We really do seem to have the same thing. Thank you for telling me about the seizures - yes, they are a 'whole body thing'. No thrashing about or jerks, so maybe I can rule those out. Just have no muscle response, although I can hear perfectly.
The hospital said I was to have a Holter -but my G.P has stopped it! He told me that abnormalities that were recorded on a hospital machine don't count with him. ??????? He says he would only accept it if the abnormality was recorded 'locally'. However, there is no chance of that because he is not going to allow me to have the test. It is so irrational. At the moment, I feel I haven't got the energy to waste fighting the NHS. It is better spent trying to improve.
Blood carbon dioxide and oxygen in CFS
Hi, fresh_eyes and the group.
I would like to offer an explanation for the abnormalities in blood levels of carbon dioxide and oxygen in CFS, based on the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS.
First, why is CO2 found to be low in the blood or in the exhaled gases of many PWCs?
It's because of mitochondrial dysfunction, which is caused fundamentally in CFS by glutathione depletion. This allows oxidizing free radicals to rise in concentration, and they block certain enzymes in the Krebs cycle and the respiratory chain, which lowers the rate of oxidative metabolism, thus producing CO2 at a lower than normal rate. So CO2 is lower because less is being produced. The mitochondria also produce ATP at lower rates than normal, which is what produces the fatigue in skeletal muscle cells in CFS.
The conventional explanation for hypocapnia has been hyperventilation. However, when ventilation is measured in CFS, it is not found to be hyper. There are several published papers reporting hypocapnia in CFS, and all of them invoke hyperventilation as the explanation, but none of them actually measured ventilation. The authors simply did not consider the possibility that CO2 was not being produced at a normal rate in PWCs.
The respiratory center in the brainstem regulates the rate and depth of breathing (minute volume) by monitoring the CO2 level and the pH of the blood it receives (not the oxygen, unless it drops down to the emergency trip point). In CFS, because the rate of CO2 production is below normal, the blood CO2 concentration goes down. This causes the respiratory center to slow and shallow the breathing. However, the CO2 rate of production in many CFS cases is so low that even though the breathing is slowed way down and made shallow, the CO2 level in the blood still does not get up to normal. This is the origin of the reports from many PWCs that they "have to remember to breathe." When they fall asleep, they do not "remember to breathe," and that can eventually cause the oxygen level in the blood to go too low, so that the emergency trip point is reached, which causes awakening and gasping for air. This is a type of sleep apnea that occurs in some PWCs. It also accounts for the gasping that sometimes occurs while a PWC is awake.
Now we come to the oxygen levels in the blood. Usually these are in the normal range in the arterial blood, assuming that the lungs are functioning normally, which they usually are in CFS. In the venous blood, the oxygen level can be higher or lower than normal in CFS, depending on two competing factors. First, because of mitochondrial dysfunction, not as much oxygen is being used as normal in the metabolism, and this tends to cause the venous blood to have a higher oxygen level than normal. On the other hand, the cardiac output is often lower in CFS, for a couple of reasons, and this means that the flow of blood that is carrying oxygen to the tissues is lower than normal. The effect of this is to lower the amount of residual oxygen in the venous blood, because the cells would tend to draw down the oxygen level further in the smaller flow of blood, in order to get what they need. So the net effect on venous oxygen levels can go either way, depending on which of these factors is dominant in a given PWC.
The causes of the low cardiac output in CFS are two. The most important is that the total amount of blood (total blood volume) is lower in many PWCs than in normals. The second is that the heart suffers from diastolic dysfunction in many PWCs.
The causes of both these problems are glutathione depletion. The first is caused by glutathione depletion in the pituitary gland. This lowers the rate of production of antidiuretic hormone, and that causes the PWC to have a "mild" case of diabetes insipidus (not the same as diabetes mellitus). The diabetes insipidus causes excessive wasting of water into the urine, and that lowers the total blood volume, even though the PWC is constantly thirsty and drinks a lot of fluids.
The diastolic dysfunction is caused by glutathione depletion in the mitochondria of the heart muscle cells. By the mechanisms described above, this lowers the rate of production of ATP by the mitochondria. and a low rate of availability of ATP to the heart muscle fibers is the direct cause of diastolic dysfunction.
I think the above explains the various levels of oxygen and CO2 that are found in the arterial and venous blood in PWCs, and why they are not all the same. I did not cite the published evidence that supports this hypothesis, but there is quite a lot.
Thank you so much for this brilliantly clear explanation.
I feel really grateful to have you on this forum!
I think in your case, your GP is applying a completely hardcore version of the NICE guidelines "no tests for those hypochondriac nutters with CFS" policy.
I seriously think you should register with a new GP.
If you contact the founder of this website I think he may be able to help you find a "safe" GP near you. I am saying no more than that but I am tapping my finger against the side of my nose. I hope you understand...
I absolutely agree with Athene, CG. You really must get to another doc and with those hospital medical records in hand - that is very critical.
We should all be requesting a copy of medical records, especially all testing at the time it is done. Read it yourself and keep it for your files. They are YOUR records and you have a right to them and also a responsibility to yourself to be as informed and as knowledgeable as possible. It's easier to get copies as you so along. And certainly in this case C.G, you need those records in hand whether you continue with this guy or go to a new physician. A new one, and the sooner the better:worried:
Hello Athene and Lily,
Yes, I agree with you both and thank you so much for your wise words. I am not up for battle yet, but when I hit a better patch, I shall make one last visit. Then that will be it.......but, that said, he is still the best in the practice. :tear:
Yep, I get the tapping of nose.....
Now I must :In bed: :headache:
to you both
OK C.G. - best of luck to you dear. Hang in there. I would dearly LOVE to see those hospital records!!:worried: I just can't even imagine in my wildest dreams, even a really crappy doctor, responding like that! However sounds like he is really into the UK way of treating people with CFS. However, I really don't think the hospital ER physicians would have kept monitoring your heart if you were in normal sinus rhythm. I know I'm preaching to the choir, so sorry. I can only imagine how frustrating it must be.
Take care of yourself country girl and get lots of rest!
Getting the records is no battle as you just have to phone a bored secretary who copies them and posts them to you with a modest invoice.
The rest of it takes lots of energy and I really understant how you feel. I have been getting "Doctor Appointment Fatigue" myself lately!
All the best and hugs,
Athene and Lily,
I'm hanging on in there until Dr Judy's talk on the 22nd. Just in case there is some supporting evidence of M.E.....well......existing, then I'll take it to the G.P. He has already said he doesn't think XMRV could be involved in what is referred to as 'chronic fatigue'.
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