Crazy weight gain

[Tony Mach]

You are from Australia and want to fly to Belgium to go to DeMeirleir? I don't know the treatment regime of DeMeirleir, but from what I've seen from other ME/CFS doctors it usually involves adjusting the treatment over time, so I don't know if a one-time visit is worth the trouble, cost and stress. And I don't know if your current doctors will listen to what DeMeirleir has to say (my doctor certainly doesn't care about Klima and Komaroff and all the others).

And there isn't one cardiologist who would try low dose alpha-/beta-blockers for POTS? Bloody dark ages. My strategy for the futere is to take one problem (say POTS), got to the specialist (say a cardiologist) and see if I can get help for it - and don't mention ME/CFS (and maybe tell only other things only when important to that problem). For me, my energy is limited so if the doctor doesn't help it is difficult for me to try out a new one...

(Before I go for alpha-/beta-blocker, I am currently trying Equilibrant (equilibranthealth.com) from John Chia, which you can order from any country. I've orderered two boxes for now (to minimize the chance to get any problems with customs here in Germany), but it's too early to tell...)

 

[Athene]

As a former KDM, patient I'd just like to throw into the discussion here that, over a period of 8 months, he cost me 15 thousand pounds (excluding the cost of the medicines he prescribed) and I went from relatively functional but feeling ill, to being completely bedbound.
I have now, nearly 2 years on and after treatment under a different doctor for the last 8 months, got back to where I started.

Most people in his waiting room did not have this experience, they just stayed the same, for several years.... Spending lots of money and getting nowhere.

KDM doesn't know any great secrets that your family doctor is unaware of. He is just willing to prescribe anything that is the new buzzword in CFS research, and see what happens.

 

[taniaaust1]

Update. I got up this morning and the hyperpigmentation Ive got on my foot/ankle has majorly spread.

What was just the size of a dime is now at least over the size of half my palm. I need to start getting some answers somewhere on what is going on and whether its certainly throu my insulin or if its sign of cancer or if its due to my low cortisol (Addisons disease get similar). Im starting to get very concerned it could be sign of cancer as when caused by insulin everything Ive read says hyperpigmentation caused by diabetes/prediabetes develops slow. Increasing 4times size over night.. isnt slow. Problem now isnt just in the crease of my foot area but covering right over the top of my foot.

Yesterday morning I had a big seizure. (cause unknown)

You are from Australia and want to fly to Belgium to go to DeMeirleir?

He occassionally comes to australia and next over here towards end of the month. (Probably would be too late to get in with him esp by the time I convince my boyfriend to be okay with me going if I could get in).

And there isn't one cardiologist who would try low dose alpha-/beta-blockers for POTS? Bloody dark ages. My strategy for the futere is to take one problem (say POTS), got to the specialist (say a cardiologist) and see if I can get help for it - and don't mention ME/CFS (and maybe tell only other things only when important to that problem). For me, my energy is limited so if the doctor doesn't help it is difficult for me to try out a new one...

(Before I go for alpha-/beta-blocker, I am currently trying Equilibrant (equilibranthealth.com) from John Chia, which you can order from any country. I've orderered two boxes for now (to minimize the chance to get any problems with customs here in Germany), but it's too early to tell...)

Ive seen two cardiologists so far and neither had ever heard of POTS (Ive brought POTS up now to at least 8 different doctors and specialists while trying to get help). From the responses Ive got, I dont think Aussie specialists are really aware of POTS. When Ive tried to educate doctors on POTS they either arent interested and just say they havent heard of it and have turned down the info I brought in, on it from reliable American Sources "that's in America and so the info isnt relevent to Australia".

Unfortunately to see a specialist one has to get a referal from a doctor to and the doctor also then passes on all ones medical history including about one having ME/CFS. Any new doctor Ive seen has requested my medical notes to be sent throu. So going to a specialist without them knowing of ones ME Ive found so far impossible. (actually I havent had any issues with that info passed on as it hasnt caused trouble when Ive ever seen any specialists... none of them have ever taken me as a "just in ones head" patient.

I just tried to look up that Equilibrant and found that it "is composed of a proprietary blend of vitamins, minerals, and herbs that have been selected specifically for their individual immune system supporting properties."

Here in Australia many things which can be gotten in America are banned or blocked due to the TGA (theraputic good act). Im curious what herbs are in it? (I used to take things like garlic, ginseng and echinacea trying to boost immune system)
(I cant take many standard vitamin supplements due to copper being in them.. my copper level is very high and Im currently working on getting it down into a normal range).

 

[taniaaust1]

As a former KDM, patient I'd just like to throw into the discussion here that, over a period of 8 months, he cost me 15 thousand pounds (excluding the cost of the medicines he prescribed) and I went from relatively functional but feeling ill, to being completely bedbound.
I have now, nearly 2 years on and after treatment under a different doctor for the last 8 months, got back to where I started.

Most people in his waiting room did not have this experience, they just stayed the same, for several years.... Spending lots of money and getting nowhere.

KDM doesn't know any great secrets that your family doctor is unaware of. He is just willing to prescribe anything that is the new buzzword in CFS research, and see what happens.

Thanks Athene for that warning about costs etc. nods its the same anywhere, one never knows how one will respond to any treatments. umm hearing that cost puts me off of seeing him. I knew he was quite expensive but didnt know he was just that expensive.

Im sure he knows far more then my own GP thou who I often wonder if he even believes ME/CFS exists, he may not (he's so wishy washy when I ask him questions to try to find out what he thinks of it). My GP only pays attention to anything if a specialist tells him something.

 

[Tony Mach]

Ive seen two cardiologists so far and neither had ever heard of POTS (Ive brought POTS up now to at least 8 different doctors and specialists while trying to get help). From the responses Ive got, I dont think Aussie specialists are really aware of POTS. When Ive tried to educate doctors on POTS they either arent interested and just say they havent heard of it and have turned down the info I brought in, on it from reliable American Sources "that's in America and so the info isnt relevent to Australia".

What I would try to do is find a cardiologist at a university, preferably a young one. You can ask before you make an appointment if they can do a tilt table test and try to find an university with the equipment.

Tell the doctor about your POTS problems, that you would like to find out exactly what you have. Probably it is Orthostatic Tachycardia - when you stand up, your blood pressure stays roughly the same but your heartrate rises (but see below and try to find out what exactly it is), but ask the doctor to confirm and find out exactly what it is.

Tell the doctor, that if he confirms the POTS, that you would like to try a low dose beta blocker or a alpha and beta blocker to see if it helps with your POTS.

Prepare by doing a "DIY" tilt table test:
Get a blood pressure monitor (maybe you can borrow one from your doctor). Lie down in your bed, make sure you are complete at rest for some time. Measure your blood pressure and heartrate while lying down at rest, write them down. Stand up and lean with your back against a wall (to support your weight as good as possible). Wait three minutes standing, then measure blood pressure and heartrate again and write down again. If your heartrate rise more than 30 (say from 60 to 90), then you probably have Orthostatic Tachycardia. If your heartrate doesn't change much, but you blood pressure does change much, you have some other orthostatic problems.

Here is a good description of a real tilt table test:
http://www.heaveninmyfoot.com/2008/05/tilt-table-test.html



Print out the following and take it to the cardiologist:

The 2009 study by the Lights:
http://www.co-cure.org/Light.pdf
("Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome")

And this page from the forum:
http://forums.phoenixrising.me/showthread.php?1138-Dr.-Light-on-Beta-Blockers-for-ME-CFS

 

[aprilk1869]

Update. I got up this morning and the hyperpigmentation Ive got on my foot/ankle has majorly spread.

What was just the size of a dime is now at least over the size of half my palm. I need to start getting some answers somewhere on what is going on and whether its certainly throu my insulin or if its sign of cancer or if its due to my low cortisol (Addisons disease get similar). Im starting to get very concerned it could be sign of cancer as when caused by insulin everything Ive read says hyperpigmentation caused by diabetes/prediabetes develops slow. Increasing 4times size over night.. isnt slow. Problem now isnt just in the crease of my foot area but covering right over the top of my foot.

Do you take iron supplements or cook in iron pans? I've been reading up on iron recently and came across this info:-

PIGMENTATION
Iron overload has often been called the "bronze disease", because untreated people can develop this natural beautiful tan without going out in the sun, but that is an end stage and we don't see that any more, but you will see isolated patches of brown that almost look like coffee stains on the skin. These clear up dramatically and the bronzing goes away as the iron is removed.
http://consumerhealth.org/articles/display.cfm?ID=19990303140150

 

[Lala]

As a former KDM, patient I'd just like to throw into the discussion here that, over a period of 8 months, he cost me 15 thousand pounds (excluding the cost of the medicines he prescribed) and I went from relatively functional but feeling ill, to being completely bedbound.
I have now, nearly 2 years on and after treatment under a different doctor for the last 8 months, got back to where I started.

Most people in his waiting room did not have this experience, they just stayed the same, for several years.... Spending lots of money and getting nowhere.

KDM doesn't know any great secrets that your family doctor is unaware of. He is just willing to prescribe anything that is the new buzzword in CFS research, and see what happens.

Oh my god, I did not know such prices are ever possible. I had to read it twice to assure myself I was reading right.

 

[taniaaust1]

Prepare by doing a "DIY" tilt table test:
Get a blood pressure monitor (maybe you can borrow one from your doctor). Lie down in your bed, make sure you are complete at rest for some time. Measure your blood pressure and heartrate while lying down at rest, write them down. Stand up and lean with your back against a wall (to support your weight as good as possible). Wait three minutes standing, then measure blood pressure and heartrate again and write down again. If your heartrate rise more than 30 (say from 60 to 90), then you probably have Orthostatic Tachycardia. If your heartrate doesn't change much, but you blood pressure does change much, you have some other orthostatic problems.

Here is a good description of a real tilt table test:
http://www.heaveninmyfoot.com/2008/05/tilt-table-test.html



Print out the following and take it to the cardiologist:

The 2009 study by the Lights:
http://www.co-cure.org/Light.pdf
("Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome")

And this page from the forum:
http://forums.phoenixrising.me/showthread.php?1138-Dr.-Light-on-Beta-Blockers-for-ME-CFS

Ive known I have POTS for the past 3-4 years as Ive done the testing myself and my heart rate can raise anywhere up to 55 beats a minute on standing from laying. (for diagnoses I think one only needs it to raise by 25-30beats.. so mine is doing almost double that).

I also can completely faint from a tilt table raise. My chiropracter who uses one raised me on his and I ended up on floor nearly completely unconscious (very lucky on that occassion to not pass completely out like Ive often done but I did with the one tilt table experience I had, ended up crashing to the floor dizzy and blind and had I been strapped to it.. I would of gone unconscious within seconds). I havent allowed myself to be raised on a tilt table since. There is no doubt at all I have POTS from my own heart rate monitoring (along with POTS treatments help).

My issue has been for past years.. getting a doctor to believe POTS exists and if I have to be tested to prove to them.. I'll be tested but I myself for myself dont need any more testing to know I have POTS. Ive even taken on POTS info from the mayo clinic which they have ignored (due to it being american health info).

I think I will try your suggestion of university thou I dont quite understand it so you will have to explain more what you mean. Do you mean like find a student doctor at a university??? (I dont think universities have their lecturers seeing patients).

 

[taniaaust1]

Do you take iron supplements or cook in iron pans? I've been reading up on iron recently and came across this info:-

Interestingly.. Ive never heard of bronze disease before. My issue thou cant be too much iron as I have low iron (no iron storage so are classified as being borderline anemiac even thou I eat meat 3 times daily).

 

[aprilk1869]

Interestingly.. Ive never heard of bronze disease before. My issue thou cant be too much iron as I have low iron (no iron storage so are classified as being borderline anemiac even thou I eat meat 3 times daily).

If you're eating red meat and still have low iron storage (ferritin?) then there's something very wrong. Either you're not absorbing iron or you're not utilizing it properly (biounavailable).

Biounavailble iron is potentially very toxic and could explain your hyperpigmentation and seizures. I don't know an awful lot about the subject but you might want to ask Rich van K as he'd probably know about it. It's also linked to biounavailable copper and hyothyroidism.

I think in order to make iron bioavailable you need to have various co-factors in place such as folate, p5p, b12 and maybe some others but I really don't know an awful lot about this. Liver pills are supposed to be good because they contain a wide range of vitamins and minerals.

This article is worth reading:

http://www.drlwilson.com/articles/IRON.htm

 

[Marco]

I am convinced there is some type of metabolic problem going on here for thoiseof us with this extreme problem. As we often have miuto dysfunction i wonder if it is linkrd to this. I always have a bit more energy after eating as i think it gives a direst boost of glucose o be converted to ATP. Despite may of us having this weight gain problem from eating very little it doesnt seem to be understood at all.

Brown adipose tissue (brown fat) is considered to be a major factor in both how efficiently we burn excess calories and also how we adapt to cold.

Brown fat is jam packed with mitochondria and their function relies on these mitochondria 'shorting' to produce heat.

I wonder to what extent the action of brown fat might suggest a more general mito problem. Its easily tested in a lab via seeing what the response is to cold exposure.

I also wonder how many of us have a history of easy weight gain and cold intolerance.

 

[Athene]

TaniaAust,
I am worried that your hyperpigmentation could be Addisons disease. I read up all about it, as they thought I had it at one point.
Apparently it is a very underdiagnosed illness so your doc may not have considered it. Most of the symptoms are a subset of CFS (low cortisol and exhaustion are the main ones) so you might not notice. The first step is to get ANA titers measured (auto immune antibodies) and a test of your cortisol level. If these a positive and cortisol is low, they then try to provoke your adrenal gland to react, to see if it can.
There are lots of articles on the net about it.
Athene

 

[Mya Symons]

Tania, please make sure you go to the doctor and tell him about this. I don't mean to be a worry wart, but a similar thing happened to my mother and it ended up being congestive heart problems. Because some people have heart problems with CFS/ME, it would be a good idea to get it checked out, I think.

I also gain weight really easily and I rarely eat a lot because I always feel full. Part of it is because of an inability to exercise. But, I think another reason might be that our bodies store energy but no longer can burn it. Every once in awhile I will go through a phase where I loose a lot of weight (40 to 50 pounds because I am not eating much). Then I revert back to the same old gaining weight from eating little.

Marco, I went through several years of cold intolerance and now I tolerate cold well but can't tolerate heat. I wonder what has changed?

 

[Marco]

Marco, I went through several years of cold intolerance and now I tolerate cold well but can't tolerate heat. I wonder what has changed?

Me too Mya. I used to be so cold all the time that I'd hug radiators. Strangely at that time, for the only time in my life, I had no tendency to gain weight.

Nowadays I don't have the same general cold intolerance, gain weight easily again and have no tolerance for heat. But if I do get really cold from being outside, it can take literally days to warm up again.

 

[taniaaust1]

If you're eating red meat and still have low iron storage (ferritin?) then there's something very wrong. Either you're not absorbing iron or you're not utilizing it properly (biounavailable).

Biounavailble iron is potentially very toxic and could explain your hyperpigmentation and seizures. I don't know an awful lot about the subject but you might want to ask Rich van K as he'd probably know about it. It's also linked to biounavailable copper and hyothyroidism.

I think in order to make iron bioavailable you need to have various co-factors in place such as folate, p5p, b12 and maybe some others but I really don't know an awful lot about this. Liver pills are supposed to be good because they contain a wide range of vitamins and minerals.

This article is worth reading:

http://www.drlwilson.com/articles/IRON.htm

umm interesting. I wish I could get this more followed up cause yes something is certainly wrong esp in regard to my levels with the amount of meat I eat.

I had my folate tested the other week and that is fine and my B12 blood test is in normal range (high normal.. thou i do understand one can be still cellular deficient). I wish I knew what was affecting my iron.

 

[taniaaust1]

Brown adipose tissue (brown fat) is considered to be a major factor in both how efficiently we burn excess calories and also how we adapt to cold.

Brown fat is jam packed with mitochondria and their function relies on these mitochondria 'shorting' to produce heat.

I wonder to what extent the action of brown fat might suggest a more general mito problem. Its easily tested in a lab via seeing what the response is to cold exposure.

I also wonder how many of us have a history of easy weight gain and cold intolerance.

I'd always wondered why we can often have intollerance to cold.. so thanks for this post.

 

[taniaaust1]

TaniaAust,
I am worried that your hyperpigmentation could be Addisons disease. I read up all about it, as they thought I had it at one point.
Apparently it is a very underdiagnosed illness so your doc may not have considered it. Most of the symptoms are a subset of CFS (low cortisol and exhaustion are the main ones) so you might not notice. The first step is to get ANA titers measured (auto immune antibodies) and a test of your cortisol level. If these a positive and cortisol is low, they then try to provoke your adrenal gland to react, to see if it can.
There are lots of articles on the net about it.
Athene

Ive already had my cortisol tested several times (at my insistance and it is out of normal range and low).... but the doctors dont worry about the abnormal test results and doing the follow up kind of tests (eg the provoked adrenal gland ones). All this is why this rash has worried me so much. (Im sure my doctors dont know anything about low cortisol and its issues)

I still have the rash and its spreading. I was at one of my specialists last week but we spent the 45min appointment dealing with my insulin issues and hypoglycemia and questions around seizure (Ive just found out one of my seizures which presented differently to my others may of been due to my hypoglycemia) which took up all the time (him writing out stuff so i can get a glucose monitor etc etc) so we didnt get time to get to the rash and hence I have another appointment in a couple of weeks to show him it etc.

(yeah i know hypoglycemia is also a sign of addisons disease).
...........

(now i have a new issue i dont know what is going on with my mouth.. fungus in my mouth??) http://forums.phoenixrising.me/showthread.php?12963-Mouth-issue

 

[taniaaust1]

Tania, please make sure you go to the doctor and tell him about this. I don't mean to be a worry wart, but a similar thing happened to my mother and it ended up being congestive heart problems. Because some people have heart problems with CFS/ME, it would be a good idea to get it checked out, I think.

I havent got congestive heart problems yet so know that is fine..
but within last few years have developed issues with leaking heart values which I only found out about a month or so ago (which can lead to congestive heart problem if they got worst, doctors arent currently worried about the leaking heart values as the leak is minor.
My research on my heart valve issues thou indicates they are probably being caused by a PVO (one of most common cause.. if I'd been born with these I'd think they would of been picked up in my previous heart tests) but of cause my doctors are unaware of what the leaking heart valves probably mean as they dont know about how PVOS and ME/CFS relate)

 

[taniaaust1]

Marco, I went through several years of cold intolerance and now I tolerate cold well but can't tolerate heat. I wonder what has changed?

Mya same here. I used to get extreme cold intolerance for many many years of ME. Nowdays I dont often get cold intollarance and my previous issues such as Raynauds disease and chillblanes are gone. Its like my body can nowdays mostly retain its body heat. My hands are even nowdays warm (instead of having icy cold fingers). I used to as the other said.. always be like hugging the heaters (and would actually sit on them to try to keep warm).

Ive ever since I got this illness thou had heat intollerance so that hasnt changed.

 

[aprilk1869]

umm interesting. I wish I could get this more followed up cause yes something is certainly wrong esp in regard to my levels with the amount of meat I eat.

I had my folate tested the other week and that is fine and my B12 blood test is in normal range (high normal.. thou i do understand one can be still cellular deficient). I wish I knew what was affecting my iron.

I've recently been trying to understand more about the krebs cycle and came across this comment from Rich:

First, in my experience, most PWMEs/PWCs report that they do better on a high-protein diet. I believe that the reason for this is that they are not able to burn carbs and fats for fuel as well as normal, because of a partial block of aconitase in the Krebs cycle, resulting from glutathione depletion. As a result, they burn amino acids from protein more than normal. Some amino acids can enter the Krebs cycle downstream of the partial blockade, and transaminase reactions can convert one amino acid to another, with the help of vitamin B6 as a cofactor, so that they can be fed to the Krebs cycle and burned for energy, to supply ATP.

If PWMEs/PWCs continue to consume carbs or fats at the levels they did before they became ill, significant amounts of these will be converted to stored fat, and they will gain weight, but still be starved for fuel.
http://forums.phoenixrising.me/show...ssues-benefits&p=151037&viewfull=1#post151037

I looked up aconitase and noticed that it seems to have some involvement in iron levels in the cells. The problem is that I really don't understand much of this as it's obviously written for people with more biochemistry knowledge.

The cytosolic form of aconitase also acts as iron regulatory protein 1. The lower structure, from PDB entry 2ipy, shows how it performs this entirely different function. The iron-sulfur cluster in aconitase is unstable and must be replaced occasionally when it falls out. When iron levels in the cell get low, there isn't enough iron to regenerate the cluster, and the protein shifts to its second function. The protein opens up and grips hairpin loops in a few specific messenger RNA molecules. These include a hairpin at the start of the messenger RNA for ferritin, and five similar hairpins at the end of messenger RNA for the transferrin receptor. When the iron regulatory protein 1 binds, it inhibits the formation of ferritin, so that less iron is locked up in storage, and it enhances construction of the transferrin receptor, so the cell can pick up more transferrin out of the blood, and with it, more iron.
http://www.pdb.org/pdb/101/motm.do?momID=89

All I know is that the Metametrix Organix test will tell you about your Cis-Aconitate levels.

Disease Relevance

A serious ailment associated with aconitase is known as aconitase deficiency.[16] It is caused by a mutation in the gene for iron-sulfur cluster scaffold protein (ISCU), which helps build the Fe-S cluster on which the activity of aconitase depends.[16] The main symptoms are myopathy and exercise intolerance; physical strain is lethal for some patients because it can lead to circulatory shock.[16][17] There are no known treatments for aconitase deficiency.[16]

Another disease associated with aconitase is Friedreich's ataxia (FRDA), which is caused when the Fe-S proteins in aconitase and succinate dehydrogenase have decreased activity.[18] A proposed mechanism for this connection is that decreased Fe-S activity in aconitase and succinate dehydrogenase is correlated with excess iron concentration in the mitochondria and insufficient iron in the cytoplasm, disrupting iron homeostasis.[18] This deviance from homeostasis causes FRDA, a neurodegenerative disease for which no effective treatments have been found.[18]

Finally, aconitase is thought to be associated with diabetes.[19][20] Although the exact connection is still being determined, multiple theories exist.[19][20] In a study of organs from mice with alloxan diabetes (experimentally induced diabetes[21]) and genetic diabetes, lower aconitase activity was found to decrease the rates of metabolic reactions involving citrate, pyruvate, and malate.[19] In addition, citrate concentration was observed to be unusually high.[19] Since these abnormal data were found in diabetic mice, the study concluded that low aconitase activity is likely correlated with genetic and alloxan diabetes.[19] Another theory is that, in diabetic hearts, accelerated phosphorylation of heart aconitase by protein kinase C causes aconitase to speed up the final step of its reverse reaction relative to its forward reaction.[20] That is, it converts isocitrate back to cis-aconitate more rapidly than usual, but the forward reaction proceeds at the usual rate.[20] This imbalance may contribute to disrupted metabolism in diabetics.[20]
http://en.wikipedia.org/wiki/Aconitase