Update on Alex3619: in hospital but doing well

[taniaaust1]

There is something weird in my profile though. My blood is consistently low in sodium. I still do not yet know what this means. Despite high blood pressure, and partially because of my orthostatic intolerance and iodine deficiency, I eat lots of iodized salt (and the occasional sea vegetable). Yet my sodium is low. There are disorders that are implicated in ME that might predispose to this, but I have not checked this out in depth yet.

Hi alex.. Ive had low sodium before for no reason at all (in those days I used to love my salt and vinegar potato chips so ate a lot of those..before I had to be on the diet Im on now). When I had the low sodium going on thou, I had abnormally high chloride levels so Im wondering what your chloride levels are like? Since your sodium has gone down, have they gone up?

 

[alex3619]

Chloride tends to be normal but right at the low end.

 

[taniaaust1]

I was just catching up on your posts here and just read about your other issue. I hope its sorted out soon for you and that you havent developed yet another issue which isnt easily solvable. Sometimes it feels like this illness all just goes on and on growing that some hellish monster, things feeding into other things.

best luck.

 

[heapsreal]

You sure it wasn't here, its a pretty darn big hill:

http://inskyrim.files.wordpress.com/2012/01/screenshot140.jpg

in my hay day of playing rugby league, i played for this police team full of young fit guys. We did a short road run before running up this hill, the only ones that made it to the top without stopping or walking were the couple of little whippets that were built more for marathons then rugby. A few of us just rolled down the hill, its dam steep and long. If someone could run up that they would be an 18 out of 10, its a shocker.

 

[heapsreal]

You sure it wasn't here, its a pretty darn big hill:

http://inskyrim.files.wordpress.com/2012/01/screenshot140.jpg

i think queens rd is alot steeper.

 

[MeSci]

There is something weird in my profile though. My blood is consistently low in sodium. I still do not yet know what this means. Despite high blood pressure, and partially because of my orthostatic intolerance and iodine deficiency, I eat lots of iodized salt (and the occasional sea vegetable). Yet my sodium is low. There are disorders that are implicated in ME that might predispose to this, but I have not checked this out in depth yet.

I did a lot of reading up on hyponatraemia following two severe episodes that were near-life-threatening, but the only relatively-simple theory I came up with was that sodium was being lost in urine along with lactic acid, which in turn had built up due to over-exertion+ME. I got that info from this paper on d-lactic acidosis (which some of us may have). It says:

D-lactate anions are reabsorbed by the kidney much less readily than is L-lactate [54, 69, 70], as time progresses, the anion gap may decline without resulting in a rise in the plasma bicarbonate concentration-that is, D-Iactate is excreted as its Na or K salt (Fig. 6).

Other possibilities include problems with angiotensin, but it was too complicated to get my head round - so many possible abnormalities and interactions. I do have a variation in my ACE gene which could explain my hypertension and other things related to angiotensin.

My hyponatraemia was accompanied by very low blood bicarbonate, suggesting acidosis.

 

[Esther12]

Best of luck with everything Alex.

 

[alex3619]

I now have three disorders that can induce lactic acidosis, including ME (which if Julia Newton is right can induce local acidosis). Iron disorders do so, and so does diabetes.

 

[OverTheHills]

ME certainly involves biochemistry that would drive PGD2 synthesis, because of bad regulation of eicosanoids due to inflammation, decreased glutathione, nitric oxide and peroxynitrite.

Alex best of luck managing your current crop of health issues.

(Off thread) And thanks for the little quote above. I have wondered forever why there was such a strong statistical link between endometriosis and ME and you have just expressed something in terms I can understand (as a science dummy).

I used to moderate my pretty severe endo using starflower oil, other supplements and mefanemic acid (I was living in the UK so I couldn't get surgical treatment from the NHS). Once I got ME my endo, travel sickness and mega histamine reactions faded out. A history of poor eicosanoid regulation is a marker for predisposition to ME maybe? End of digression.

OTH

 

[Esther12]

I now have three disorders that can induce lactic acidosis, including ME (which if Julia Newton is right can induce local acidosis).

How many more for a complete set?

 

[alex3619]

I am starting to come to the conclusion that my doctors don't know what they are talking about, again, and that there is nothing wrong with my iron. I am still researching this. Some things that can induce issues like mine are cancer but my white blood cells are fine. So when you rule everything out ... you are left with an empty set.

Two possibilities they wont be thinking about are that I am on resveratrol (a possible cause of high ferritin) and may have hypoxia and inflammation in my left foot (another possible cause of high ferritin). Ferritin can be released in response to either heavy metals, or a loss in cellular energy which just might be from heavy metals so the body releases a whole lot of ferritin to soak them up. ME could be screwing things up.

I have more energy though. That does not fit with iron poisoning.

I have been commenting on this elsewhere.

As for my small fiber polyneuropathy, stuff it, I am going to buy an air conditioner.

 

[Lynne B]

Hi, Alex,

I don't know how you could have survived without an airconditioner till now, especially living in Brisbane, which is hotter than Sydney, where I live. I also have hyponatremia, high blood pressure and high iron as well as small fibre neuropathy. The latter makes my feet burn and sting, and my feet and lower legs go red and swell so much I have had to buy larger shoes and sandals. I can't tolerate temperatures outside the range 20-22 degrees Celsius. Although I have nothing for either the hyponatremia or the high iron, I now have blood pressure pills (Tenormin and Karvezide) as well as Lyrica and Cymbalta for the neuropathic pain. The last two certainly help by dulling the sensitivity and I think they help with my sleep. I addition I take a cold pack in a small esky everywhere I go, so I can take off my sandals and cool my feet if need be. The worst thing is driving home with burning and stinging feet, because I can't get any relief till I get home. I notice your small fibre neuropathy is all over your body and sympathise greatly. Although mine is more localised I notice it in my hands now and then. At night I have to sleep with feet sticking out of the covers off the end of the bed. If its hot enough and my hands are implicated I make small air pockets under the doona so my palms don't touch anything.

Hope some of my aids might help you too.

 

[alex3619]

Hi, Alex,

I don't know how you could have survived without an airconditioner till now, especially living in Brisbane, which is hotter than Sydney, where I live. I also have hyponatremia, high blood pressure and high iron as well as small fibre neuropathy. The latter makes my feet burn and sting, and my feet and lower legs go red and swell so much I have had to buy larger shoes and sandals. I can't tolerate temperatures outside the range 20-22 degrees Celsius. Although I have nothing for either the hyponatremia or the high iron, I now have blood pressure pills (Tenormin and Karvezide) as well as Lyrica and Cymbalta for the neuropathic pain. The last two certainly help by dulling the sensitivity and I think they help with my sleep. I addition I take a cold pack in a small esky everywhere I go, so I can take off my sandals and cool my feet if need be. The worst thing is driving home with burning and stinging feet, because I can't get any relief till I get home. I notice your small fibre neuropathy is all over your body and sympathise greatly. Although mine is more localised I notice it in my hands now and then. At night I have to sleep with feet sticking out of the covers off the end of the bed. If its hot enough and my hands are implicated I make small air pockets under the doona so my palms don't touch anything.

Hope some of my aids might help you too.

Hi @Lynne B, sounds like you are very similar to me medically. Thanks for the advice. My doctors are currently ignoring my neuropathy, they are focused on my bloodwork and the ER doc ignored me repeatedly when I brought up the neuropathy.

My neuropathy was all in my feet for about 13 years. Only this month did it suddenly go everywhere, but in hospital it did that while I was being treated with the blood thinner Clexane earlier this year.

I routinely put my feet outside of my blankets in winter for some relief.

 

[Lynne B]

Alex, It's taken me 12 months to convince my neurologist to give me Lyrica and Cymbalta. Before that I knew nothing about the condition except my feet got rapidly worse. Nearly a year of demoralising pain and swelling before I read articles such as this in Cort's Health Rising blog. I just went back through his site and found the article I wanted, dated 19 June 2013. It's headed: HANDS UP! A KEY TO THE FATIGUE, SLEEP AND PAIN IN FIBROMYALGIA FOUND?

There's also an article you can find from the net that explains the pathology further:
Women with Fibromyalgia Have A Real Pathology Among Nerve Endings to Blood Vessels in the Skin.
A rational biological source of pain in the skin of patients with fibromyalgia
Frank L. Rice, PhD, President and Chief Scientist, Integrated Tissue Dynamics LLC, Rensselaer, NY, June 24. 3013

Now that I've looked back on Cort's site I realise he's put lots of articles on the topic in the blog. I must go back through them all, but really, you'd be far more able than I to mentally bring them together and find the best information.

Knowledge is all very well, but if I were you I'd show these articles to a neurologist and insist on being given pain medication right away. It doesn't cut out the pain completely but the amount it does really helps, particularly for sleep. There's also some suggestion the Cymbalta may eventually have a modifying effect on the condition. (I think I read that in Wikipedia.)

Lynne

 

[alex3619]

I can use other ways to treat neuropathy, but my incapacity to travel has blocked me. Some of the nutritional treatments work quite well, but not if you can't buy them.

There is currently an advanced clinical trial about to try to cure this type of neuropathy using antivirals and antiiinflammatories, but I dont have much detail about it.

 

[PNR2008]

Here in the US Drs are not afraid of giving Gabapentin because of the pain thing and not using opiates. I take 3 300mg of gabapentin for small fiber neuropathy a day and that achy swollen feeling is gone when I first step out of bed. If I walk barefoot on the concrete porch or patio or even on the bottom of the rough swimming pool, my feet hurt for days (and nights). I have it in my fingers too but doesn't hurt as much even with the sweat thing.

Lyrica and Cymbalta didn't work for me at all and Cymbalta gave me suicidal thoughts. Gabapentin even helps moods. It took me a year to get used to 100mg but I persisted, taking half a pill or one every other night because it made me sleep for 12hrs straight.

I hope better drugs are on the horizon but til then...................

 

[Lynne B]

Yes, Alex, the Simarron site talks about Dr Pridgen's study using both antivirals and anti-inflammatories. From memory, it should finish in a month or two. What other ways do you use to cope? The travel restrictions are certainly a fact of life. We went to Singapore in June for my son's wedding but it was a disaster for me outside airconditioned buildings. I ended up in a wheelchair to see the Botanic Gardens. On the other hand, our December trip to Boston was terrific. Cold climates for me!

PNR, Gabapentin is marketed in Australia as Neurontin or Neupentin. I have packets of it sitting in my hall cupboard, after I bought it and found it lacking. We're all different!

Sorry, Alex, I'm off topic. Over to you...

 

[alex3619]

Its OK Lynne B, I sum it up in Rule 22, The Lemon Rule: 22. Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why. http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/

The only way to tell is to try things a lot of the time. The science is not advanced enough to do more. I am not averse to drugs, but I respond to methylation to some degree, and would want to pursue that first, but I haven't been able to get anything mail order reliably all year due to limited walking capacity, limited energy, a new gate on my community, and a post office system that sucks.

However my energy started going up the same time my neuropathy started getting worse, so if I can get a pair of sandals to protect my feet (I am going to try doing that Friday) then I can go to the post office, so can start mail ordering again.

The first specialist they want me to see is a gastroenterologist. At some point I might get to see a neurologist, but it will be down the track. My local doctor is useless, and my ME doc I see only occasionally.

I did try ice water on my feet when I had bad burning feet, but it was too cold. Then I tried cool water, but it didn't work that well. Eventually I found hot water worked better for me with a longer lasting effect. It works best if the hot water is so hot I can only stand it for a minute, but is not hot enough to burn me, and I repeat the water dunking several times.

Methylation supps including lipoic acid also helped.

When I was in hospital with an immobilized leg they had me on a blood thinner ... that had my whole body screaming with heat, and was the first experience I had with full body neuropathy. I even wound up having an argument with a nurse, doh.

I want to pursue all these paths till I find one that works, but like most things it happens slowly.

 

[Purple]

I did try ice water on my feet when I had bad burning feet, but it was too cold. Then I tried cool water, but it didn't work that well. Eventually I found hot water worked better for me with a longer lasting effect. It works best if the hot water is so hot I can only stand it for a minute, but is not hot enough to burn me, and I repeat the water dunking several times.

I wear wet socks (cold water) to cool my burning feet, the relief generally lasts a few hours.

 

[Lynne B]

Purple, What about the carpet?!