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Just Found This Site: Pots/cfs/fibro


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Guest humanb4monitor

lazy :o:(:o:P:(:(:lol:

I doubt any of us are that :P

I thought that site looked like something I had seen before.

I was searching for Surgical affects on POTS and found nuthin' even though I know it's true. I just wanted to READ.

If anyone finds anything---please post.

thanks for the site dizzy

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Guest humanb4monitor

PS ((dizzy)) have you posted about your diet changes? Would like to read. I TRY not to do much glutten or carbs unless---sad can do it :(:o

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There is some great research coming out now regarding CFS and Fibro. Mainly regarding amyloid proteins in the cerebral spinal fluid and ofcourse some of the XMRV stuff. The Nitric oxide theory turned out to be the opposite - some CFS patients have too LITTLE nitric oxide, not too MUCH.

What Ive found over the years is that patients often latch on to one specific theory and use it to explain every possible symptom presentation in any of these conditions, unable to question their 'belief' even when newer research comes out that provides a clearer picture.

Any CFS forum out there is full of people telling other people how a specific 'opinion' explains this or that, when really the original theory is far from proven and the patient has latched on to it because of the need to explain things. Its that human need to find an answer when there may not be any - but you need to be open to other concepts.

I guess this is what happens when medicine doesnt provide answers or for a long time never even bothered trying and so patients have had to drive the knowledge base and the research directions in many ways.

But now that the answers are coming out, it actually serves no purpose and is detrimental to the process.

The idea that gluten intolerance or reactive hypogylcemia as we understand them now play any role in the primary causes of POTS, Fibro or CFS is a stretch - and like the old leaky gut or candida theories its not accepted by wider medicine because its based on flimsy and conjectural research. These are old theories - and most of them have been clearly demonstrated to be incorrect.

What we do know about Fibro now is that neuropeptide Y and perhaps substance P are elevated. What we do know now with CFS is that there is chronic increased activity of pro-inflammatory markers and reduced blood flow to the brain (and resultant cerebral lactate levels from impaired glucose metabolism due to hypoxia), what we do know about POTS is that has many causes and is probably quite similar to 'fever' - its a syndrome with many causes.

But you cant claim to know all the answers.

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R~

Do you know of any sites where I can read more about the amyloid proteins in the cerebral spinal fluid with CFS? I've had a couple of doctors suspect amyloid, but have never had my spinal fluid tested....Thanks!

Cheers,

Jana

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I found the fish poisoning (ciguatera) quite intriguing. Even though it's old research it's new to me :lol: . 96% of CFS patients show toxic levels????? How is this possible? So many of us have had little or no exposure to the types of fish that carry this toxin. Are we producing it internally or being exposed in some alternative way? Does anyone know if there been any recent research regarding this?

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Geez, I've been researching this further & farm-raised salmon from the US, Canda & Chile has been implicated. We eat this at least 3 times a week. Yikes. I also recall becoming severely ill following a meal of sword fish when I was pregnant with Mack. He also fell in love with barracuda while in Aruba. I'm trying to remember if that's before or after he got sick. Might be something to this.....

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I thought ciguatera only occured in very tropical temperate waters - fish like giant trevally, spanish mackeral etc? Salmon is traditionally grown in cold water locations (northern america, tasmania, new zealand etc).

As for the recent amyloid connection try:

http://www.biomedcentral.com/1471-2377/5/22/abstract_

There is more on the Pheonix Rising CFS site. An interview and more recent findings.

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Geez, I've been researching this further & farm-raised salmon from the US, Canda & Chile has been implicated. We eat this at least 3 times a week. Yikes. I also recall becoming severely ill following a meal of sword fish when I was pregnant with Mack. He also fell in love with barracuda while in Aruba. I'm trying to remember if that's before or after he got sick. Might be something to this.....

I would worry much more about mercury and pcb poisoning from farm raised salmon. My Environmental Health professor authored the study showing farm raised salmon were fed mercury laden feed. He urged us all to do fish oil supplements as these are tested - of course he was most concerned about females in child bearing years.

With all the garbage dysautonomia throws at us we honestly would not know if we had mercury poisoning - it would just be more of the same old same old. My new neuro insisted on running the full heavy metal panel given my symptoms and specified that I was to be off ALL fish, including my allegedly mercury free fish oil capsules, for 10 days prior to the test.

I don't see it as a cause of POTS but the potential problem I see is that it could be contracted by any of us and the symptoms would blend into our usual and not raise any red flags - that would set us up for additional chronic problems.

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I thought ciguatera only occured in very tropical temperate waters - fish like giant trevally, spanish mackeral etc? Salmon is traditionally grown in cold water locations (northern america, tasmania, new zealand etc).

As for the recent amyloid connection try:

http://www.biomedcentral.com/1471-2377/5/22/abstract_

There is more on the Pheonix Rising CFS site. An interview and more recent findings.

Here's the study that describes a woman with ciguatera poisoning after eating farm-raised salmon: http://www.annals.org/content/122/2/113.full

What do you think accounts for the vast number (96%!!!) of CFS patients who have HIGH levels of ciguatera?

Thanks for the Pheonix Rising info- good stuff.

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Geez, I've been researching this further & farm-raised salmon from the US, Canda & Chile has been implicated. We eat this at least 3 times a week. Yikes. I also recall becoming severely ill following a meal of sword fish when I was pregnant with Mack. He also fell in love with barracuda while in Aruba. I'm trying to remember if that's before or after he got sick. Might be something to this.....

I would worry much more about mercury and pcb poisoning from farm raised salmon. My Environmental Health professor authored the study showing farm raised salmon were fed mercury laden feed. He urged us all to do fish oil supplements as these are tested - of course he was most concerned about females in child bearing years.

With all the garbage dysautonomia throws at us we honestly would not know if we had mercury poisoning - it would just be more of the same old same old. My new neuro insisted on running the full heavy metal panel given my symptoms and specified that I was to be off ALL fish, including my allegedly mercury free fish oil capsules, for 10 days prior to the test.

I don't see it as a cause of POTS but the potential problem I see is that it could be contracted by any of us and the symptoms would blend into our usual and not raise any red flags - that would set us up for additional chronic problems.

Yeah, I'm was sort of aware of the PCP connection to farm-raised salmon, but MERCURY too???? What can we eat?

That's a shame & it ought to be regulated. How hard is it to feed the salmon healthy, clean food so we could enjoy the same :o.

I checked out my brand of salmon (C Wirthy & Co. from Sam's Club.) Apparently, it's farmed in Chile- which has the best record for PCB and Mercury contamination. (Europe has the worst.)To me, it tastes better than the wild, which can be gamey. Still your warning is valid...unfortunately.

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