Do some docs treat different root causes? looking 4 mito specialist

[sueami]

I am in full on bedbound mito crash and finally ready to get serious help. I am in Colorado but would travel anywhere w of the Mississippi, once/if I recover enough to do so. I dont think i have lyme (TESTED negative w regular doc and i dont have strong viral symptoms. ) Looking for a doc to test and support mitochondrial recovery.

Considering Omri in palo alto. wondered if there were other possibilities. or should i just go to the integrative medicine clinic here in ft collins? not sure how specialized mitochondrial support is or wether i would benefit from exploring viral titers/antivirals even tho i dont have swollen lymph nodes and such.

have people here gotten major sustained improvements from specialists?

i am willing to burn thru my retirement account to regain significant quality of life.

 

[minkeygirl]

I never had viral symptoms but had great results when I first started acyclovir

I recently crashed after some dental work. I couldn't keep my eyes open, my throat was sore and swollen. I felt like mono so I upped my famvir and it took care of most of it within 2 days. When I stop it I immediatly feel crap again.

I think you have nothing to lose by looking into viruses. They key is to attack this from all angles. Don't rule something out just because you don't feel viral. Imo

 

[taniaaust1]

Yes ME/CFS doctors try to treat different causes all depending on what they believe about this illness. Hence why I had 3 different ME/CFS specialists at the same time at one point.

I suggest to go with what feels most right for you at the time. There are many avenues to explore with this and we are all different.

 

[xrunner]

Hi @sueami
I'm sorry to hear you're not well, hope things turn around for you.

have people here gotten major sustained improvements from specialists?

I went down the mito-detox-methylation route for a couple of years with two different drs and it didn't help a bit, in fact I got worse and worse.

Bear in mind that I had mito tests in the UK showing abnormal results but in my opinion they're not very reliable. I personally don't think that mitochondrial isn't even close to a possible root cause of ME, possibly a symptom but without sound testing it's hard to say.
Unfortunately we still haven't seen a basic study showing whether mito treatment can help ME patients at all or to what extent.
In the UK, we have a dr who has been treating patients this way for almost ten years now but we still haven't seen any numbers about the actual success rate.

Anyhow a few years later I discovered I had Lyme, which at the time I didn't know what it was nor thought possible. Starting to treat that began to slowly and gradually recover my strength and health.
Not sure what tests you had but to to rule it out the widest range of possible tests, covering also other chronic disabling infections that tend to recur in the ME population, would be what I'd do.

i am willing to burn thru my retirement account to regain significant quality of life.

It's up to you but I wouldn't do that.
In my case there was no positive correlation between the money I threw at the illness and payoff, especially in the first few years, if anything it went the other way round.

I personally turned the corner when I stopped going with feelings and instead started to focus on treatments where there was at least some basic pilot studies showing some helpfulness.
In fact the most helpful treatments always turned out to be the ones where initially I thought they wouldn't in my case. It's a weird illness indeed!
Best wishes

 

[liverock]

Hi @sueami

Most of your symptoms such as early morning anxiety, increased HR, heavy fatigue, palpitations are all symptoms of low potassium. What can make it worse is when these symptoms start, stress increases and sodium levels increase as consequence. This increase in sodium causes even more potassium loss on top of that and that can cause a heavy crash.

http://www.livestrong.com/article/472204-rapid-heart-rate-potassium/
http://www.livestrong.com/article/404117-low-potassium-anxiety

Are you still doing Fredd's protocol? If your not, some people assume that if they stop the protocol the increased methylation will stop and the need for checking potassium is not really needed. However the methylation cycle can have the momentum to to keep dragging on on its own at an increased rate without the supplements, using up more potassium than is realised.

Try supplementing with Potassium Glutonate powder regularly and see how you go. It might also be wise to get Potassium levels tested.

ETA Just noticed you also seem to be taking a lot more magnesium. I know its the first thing we take for palpitations, but in the case of low potassium it can make them worse as Mg and K are in a synergistic relationship ( as one goes up the other goes down) and increasing too much magnesium can lower potassium levels. From the mineral wheel can also see that higher Mg levels also decrease sodium(Na), so it can also cause a fall in both adrenal electrolytes.

http://www.traceelements.com/docs/Magnesium Wheels.pdf

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