Drug suggestions for my symptoms

[Sleepytime]

Hi everyone,

I'm new here, but I've been suffering from fatigue for 19 years (since age 20)
I'd like your input on drugs I should try. I've seen 10+ doctors over the years, and they've ruled out all the typical causes ie Lyme disease, Celiac, etc.
Some of the results I've had below may also be helpful to others.

Symptoms - most of which occur pretty randomly from day to day:

tiredness - mild to extreme
brain fog - mild to extreme
depression - none to moderate
sleep - 5-7 hours/night. I'm unable to nap
diarreah - constant, for 19 years
gut locks up at night, unless I sleep at an angle
gut pain seems to correspond with back pain

Abnormal Tests:

high folate - a bit above the high threshold
nothing else!

History:

Mononucleosis at age 7

Things that help:

Nicotine - great for motivation and depression
Provigil / Modafinil - good for alertness
Caffeine - good for alertness
Elavil / Amitriptyline - tiny doses good for sleep
Flexeril - good for sleep
Lunesta - good for sleep
Carafate / Sucralfate - cured my chronic gut pain
certain mega-dose probiotics - randomly cure diarreah for a couple days, then stop working

Things that seem to have no effect:

exercise - I've had this being both in shape and overweight
10+ different specialty diets
Ritalin
Piracetam, Choline, Inositol, RNA, TMG, Acetyl L-Carnitine, N-Acetyl Tyrosine
CoQ10, Flaxseed Oil, Resveratrol, Acai
Cholestyramine, Librax
Ambien, Sonata

Bad Drugs:

Imodium - causes severe gut pain
Zoloft / Sertraline - good for depression, but seems to have permanently destroyed my sex drive after 6 months off it
Cymbalta / Duloxetine - dizziness, nausea, vomiting, but cured diarreah for 3 days afterward!

 

[caledonia]

The gut seems to be a major player. I suggest getting a Metametrix GI Effects stool test. I believe there are also separate tests for h. pylori and SIBO.

The Metametrix test will tell you what gut bugs you have and how to kill them.

Your sex drive may still return, but it may take awhile longer.

 

[Sleepytime]

Hmm there doesn't seem to be a way to get that test unless you are a clinician. I've been tested positive for h.pylori a couple times, and treated both times.. It either keeps coming back or they aren't treating it right.

 

[Sushi]

Sleepytime

Any doctor should be able to prescribe the Metametrix GI Effects stool test. Many here have had it. You do need a doctor who is experienced in interpreting it in a way that leads to treatment though.

Sushi

 

[Sleepytime]

Ahh, I'm without health insurance right now, I'll try that when I get it again. For now I'm stuck with OTC.

 

[taniaaust1]

Im not going to suggest any drugs or supplements as I think that in your case would be just a bandaid when I think you should find out more what is going on.

I too are going to say you need to focus on your gut. Your whole issues may just be stemming from something there. I think you have something there which hasnt been treated right or found yet. Maybe you have something in which your symptoms could be fully fixed? In your case it may even pay to fly to see one of the CFS specialist who specialise in the gut things. I look at your case and wonder if you have something which is fully treatable but just has been missed.

Cymbalta / Duloxetine - dizziness, nausea, vomiting, but cured diarreah for 3 days afterward!

Maybe with the vomiting your bowels got a bit of a break from a triggering factor so started to heal?

You say you have been tested for Celiac disease.. those tests were (and may still be) only 90% accurate unless you had a gene test to rule it out like that or a bowel biopsy done. You really need to find out what is going on with your digestive system and I suggest to try to get to a CFS specialist who specialises in this area to find out the cause of your issues.

diarreah - constant, for 19 years
gut locks up at night, unless I sleep at an angle
gut pain seems to correspond with back pain

I suggest you to contact dainty who's at this site (at least was) as she had much more severe issues then you but some along similar lines as yours (which your gut description stuff makes me think of her case), which ended up being helped by some kind of specialist she saw (not medical specialist but one of some kind of natural health field who does like moving organs slightly, she had something unknown to her inside catching which some kind of organ manipulation therapy freed up). Try pming her to ask her what therapy helped her gut.

 

[heapsreal]

balancing hormones could help

 

[Sleepytime]

Im not going to suggest any drugs or supplements as I think that in your case would be just a bandaid when I think you should find out more what is going on.

I too are going to say you need to focus on your gut. Your whole issues may just be stemming from something there. I think you have something there which hasnt been treated right or found yet. Maybe you have something in which your symptoms could be fully fixed? In your case it may even pay to fly to see one of the CFS specialist who specialise in the gut things. I look at your case and wonder if you have something which is fully treatable but just has been missed.

Well I thought that as well, but after seeing 3 different gut specialists over years, the best they could come up with was "IBS". If it is gut-related, there doesn't seem to be anything they can do about it. But maybe I'll try a CFS specialist the next time I have insurance.

Maybe with the vomiting your bowels got a bit of a break from a triggering factor so started to heal?

You say you have been tested for Celiac disease.. those tests were (and may still be) only 90% accurate unless you had a gene test to rule it out like that or a bowel biopsy done. You really need to find out what is going on with your digestive system and I suggest to try to get to a CFS specialist who specialises in this area to find out the cause of your issues.

Yes they said I was "borderline" / possible celiac, but I tried gluten-free for 3 months and it had no effect. It could be a combination of things, and fixing one won't show any improvement, in which case it's just about impossible to diagnose..

I suggest you to contact dainty who's at this site (at least was) as she had much more severe issues then you but some along similar lines as yours (which your gut description stuff makes me think of her case), which ended up being helped by some kind of specialist she saw (not medical specialist but one of some kind of natural health field who does like moving organs slightly, she had something unknown to her inside catching which some kind of organ manipulation therapy freed up). Try pming her to ask her what therapy helped her gut.

I will, thanks!

 

[Sleepytime]

Any thoughts on the high folate? I read a few threads here about methylfolate, but I was unable to glean a drug recommendation, or a cause for high folate.

 

[Crux]

Hi Sleepytime;
B12 brought down my elevated folate.
B2 may help metabolize folate, by converting it to active forms.

 

[Sleepytime]

Hmm searching B12 led me to Pernicious Anaemia. My stomach ulcers certainly tie in with that. I tried a couple B12 injections in the past though, and it didn't improve anything. Maybe I need to try longer term.

 

[Crux]

I think it took about a year for the folate to go down to high normal. I probably needed to take more B12. Then the brand I was using went bad, ( jarrows), and folate went up again. I'm going to try folate again in the future, once I stabilize with B12. I'm taking Enzymatic Therapy brand sublinguals.

 

[Sleepytime]

What do you mean by, the Jarrows brand went bad?

 

[Crux]

Some of us noticed that it was very much less effective. ( Jarrow changed the formula) Now, it is no longer recommended by Freddd, et al. I brought this up in case you are considering trying another way of taking B12.