Me/cfs and metabolism,gut

[EddieB]

The Doc who will give me results is from the U.S to my surprise. Based in Illinois.

Very good. Yes, that one is called Doctors Data here in the US.

Still waiting the results for mine from GI map. I suspect the test is complete, but the practitioner hasn’t contacted me yet.

Keep us posted with your results....

 

[EddieB]

Have you been tested for SIBO? My forward thinking gastroenterologist is Having me do the SIBO breath test today.

Hello, have you gotten any of your tests done/ results back?

My seemingly “forward thinking” primary doc and gastrologist have failed me. They won’t help with getting the SIBO test or the IBS smart test.

I went to my wife’s chiropractor yesterday, and he’s willing to help. He had to create an account for the Trio smart SIBO test, so that’s underway.

Turns out, the IBS smart test can be ordered directly, but I need to find a blood lab to process the samples.

Would be interesting to see your results for the GI Map Test, Eddie...if you are willing to share them, of course!

Anyhow. I'll post again once results are in.

Stool analysis is being reviewed, probably still another week or two away.

 

[2Cor.12:19]

Hello, have you gotten any of your tests done/ results back?

My seemingly “forward thinking” primary doc and gastrologist have failed me. They won’t help with getting the SIBO test or the IBS smart test.

I went to my wife’s chiropractor yesterday, and he’s willing to help. He had to create an account for the Trio smart SIBO test, so that’s underway.
.

@EddieB She hasn't gotten back to me yet. She also ordered a Hida scan for my gallbladder and I suspect she's waiting for all the results. Good luck with the new doc.

 

[Sledgehammer]

Stool analysis is being reviewed, probably still another week or two away.

The Lab has a 14 day turnaround so I'm expecting my results some time mid April. (Next week)

 

[EddieB]

The Lab has a 14 day turnaround so I'm expecting my results some time mid April. (Next week)

Found out the lab completed the test, but the practitioner hasn’t reviewed and responded yet.

After further reading, I’m beginning to have doubts about these tests

For example. I did research on the PCR testing that GI MAP uses. I find a PubMed study that claims the process is flawed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7660239/

Then at the end, I see where the study was funded by Doctors Data, a competitor.

Now, I see that Doctors Data is doing PCR testing. Hmmm.....

Then there’s this, which claims to be the only FDA approved testing...
https://sibosos.com/stool-test-discussion-with-kiran-krishnan/

Not sure what to make of all this. I certainly hope that we can trust the results we’ll be getting.

I sent in the blood sample for the IBS Smart test yesterday.

 

[Sledgehammer]

Found out the lab completed the test, but the practitioner hasn’t reviewed and responded yet.

After further reading, I’m beginning to have doubts about these tests

For example. I did research on the PCR testing that GI MAP uses. I find a PubMed study that claims the process is flawed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7660239/

Then at the end, I see where the study was funded by Doctors Data, a competitor.

Now, I see that Doctors Data is doing PCR testing. Hmmm.....

Then there’s this, which claims to be the only FDA approved testing...
https://sibosos.com/stool-test-discussion-with-kiran-krishnan/

Not sure what to make of all this. I certainly hope that we can trust the results we’ll be getting.

I sent in the blood sample for the IBS Smart test yesterday.

Thanks for posting your findings. And to spot the competitor is a bonus.

It's sounding the same as DNA testing. Some experts will say it's garbage because one labs methods aren't to be trusted. Then they'll plaster their own lab all over the web page probably using the same methods.
Who do we trust??

Like you I think the testing is complete in the lab and I'll just have to wait for the practitioner to contact me with the results, if any.

If the lab does find issues I will pass the information to my GP and take it from there.
She didn't say anything when I mentioned the test and I haven't seen the NHS mention anything on their website either. I will have a chat with the the Gastroenterology Doc about this test and see what his thoughts are.
Whatever happens I will post back here.

 

[EddieB]

Whatever happens I will post back here.

Same here. Hopefully we will all get some answers soon...

 

[Martial]

I was curious.Seems that since me/cfs is a multi system illness foods that I normally eat tend to inflame the gut as perhaps energy systems/heat/is affecting metabolic processes like digestion.Slow metabolism,easily.gaining weight and feeling cold
Thyroid is typically normal.I ask myself is it autonomic dysfunction,metabolism.or maybe both

Whether I eat gluten or gluten free seems there is always rumbling,thunderstorm type sounds most of the day whether fasted for several hours or after a neal.I am not sure if this is tied to metabolism being slmeal.

Or if there is something separate from me/cfs that is not related to metabolism that effects the gut a few years after getting me/cfs

I remember about a year after getting me/cfs a few years back I took some C60 carbon and initially whether I ate pasta or lots of food the stomach was relatively flat

Resistant starch cold potatoes for prebiotics
Kambucha
Greek yogurt
Anti-microbials/vitals pau d arco,lemon balm Q

Seem to not make difference sometimes a little bit of milk with coffee can help shrink the gut a little

Its seems me/cfs effects metabolism and it's probably not good to rely on things that are closer to stimulants
for a process

Perhaps there are other ways to improve metabolism.

You can have symptoms of hypothyroidism without abnormal blood test levels, from sub clinical deficiency. Supplemental iodine drops usually helps this for a lot of people. I remember reading about it before thqt reference range of "normal" isn't everyone's "normal". It's important to do a very small amount and work your way up to an appropriate amount though.

 

[EddieB]

Got test results today from Dr Chia. Positive for entero virus in the stomach.

Not sure what to do about that...

 

[Sledgehammer]

Got test results today from Dr Chia. Positive for entero virus in the stomach.

Not sure what to do about that...

Any info from them on dealing with it?

 

[Davsey27]

You can have symptoms of hypothyroidism without abnormal blood test levels, from sub clinical deficiency. Supplemental iodine drops usually helps this for a lot of people. I remember reading about it before thqt reference range of "normal" isn't everyone's "normal". It's important to do a very small amount and work your way up to an appropriate amount though.

Good points though typically tsh is in the 1-2 range
Would be interested to see reverse t3 ratio as inhavent been tested for that.I have heard that ebv can attack the thyroid as well as liver but these tests seem to be normal except for Rt3 which I haven't tested .Past Infections in labs as well as a positive pcr 6 months ago

Cold sensitivity i thought may be hypothyroid but I am starting to believe it's related to environment as warm climate usually gets rid of this problem and perhaps with autonomic problems as one gets older with cfs sensitivities to changes are more noticable. Seems mitochondria works better in a warmer climate

 

[EddieB]

Any info from them on dealing with it?

Nope. Nothing.

 

[Davsey27]

Nope. Nothing.

I know a Dr at Stanford mentioned that Prozac can help with enteroviruses as well oxymatrine/equilabrant depending on the type.Of course there are those that cant tolerate ssris and certain supplements bit perhaps something to look under consult of a doc

 

[EddieB]

I know a Dr at Stanford mentioned that Prozac can help with enteroviruses as well

That’s pretty interesting...
I got talked into going on Mirtazapine (ssri) by a gastrologist awhile back. The start up made all my symptoms much more severe for several weeks. Then I saw an improvement for about 8-10 weeks. Then it all went bad,.
Took several months to get off it. I have yet to get back to where I was prior.

But perhaps the brief improvement I saw, was from the same effects that Prozac would have. My sense is that the ssri’s alter gut microbes.

I would be extremely reluctant to take antiD’s again though, after that experience.

 

[Martial]

That’s pretty interesting...
I got talked into going on Mirtazapine (ssri) by a gastrologist awhile back. The start up made all my symptoms much more severe for several weeks. Then I saw an improvement for about 8-10 weeks. Then it all went bad,.
Took several months to get off it. I have yet to get back to where I was prior.

But perhaps the brief improvement I saw, was from the same effects that Prozac would have. My sense is that the ssri’s alter gut microbes.

I would be extremely reluctant to take antiD’s again though, after that experience.

Theres a lot of serotonin receptors in your gut that is probably why it's helpful, although I don't expect it would be anti microbial just help symptoms from dysbiosis

 

[Sledgehammer]

Nope. Nothing.

I hope you can find something that helps. If my results are similar to yours when my lab test arrives I'll be on the phone to the Doc in a flash. I'm not a fan of pill popping but that's all on offer these days. I have an appointment with the gasto dept at the hospital in the coming weeks but I am seeing a sports dietitian soon so maybe I can get some help there.

The Dietitian: Had a brief encounter with him on Sunday. He suggested a blood test before and after eating.
And there will be a heap of other stuff we will be talking about during our next meeting to see if I can turn this thing around. Or at least get some relief. We'll see...

 

[EddieB]

Theres a lot of serotonin receptors in your gut that is probably why it's helpful, although I don't expect it would be anti microbial just help symptoms from dysbiosis

If you look into it further, I think there’s a lot more going on.
I’ve been researching this a lot lately, and turning up more evidence that antiDs have a major impact on gut microbes. The gastrologist that gave me the script for the Mirtazapine was on the principal you mentioned; trying to “balance serotonin”. But I believe in reality, the effects, good or bad, physical or physiological, from these drugs are the results of changing the microbiome, since that is how/ where these chemicals are produced. From my own experience, I saw dramatic changes that lasted long after the drug was stopped.

 

[EddieB]

I hope you can find something that helps.

Thanks. I hope we all do.

I wasn’t expecting the entero virus test to come back positive, since I did a blood test for entero virus last year through ARUP that was negative. Since I had to have an endoscopy back in December, I figured I would go ahead and get a sample tested just to rule it out.

Not sure how/ if entero virus fits in with SIBO or dysbiosis. And since being seen by Dr Chia in not an option, not sure about treating it. He seems to be the only one who does.

We’ll see what the other test results turn up.

 

[Sledgehammer]

Thanks. I hope we all do.

I wasn’t expecting the entero virus test to come back positive, since I did a blood test for entero virus last year through ARUP that was negative. Since I had to have an endoscopy back in December, I figured I would go ahead and get a sample tested just to rule it out.

Not sure how/ if entero virus fits in with SIBO or dysbiosis. And since being seen by Dr Chia in not an option, not sure about treating it. He seems to be the only one who does.

We’ll see what the other test results turn up.

Good luck EddieB and please post what happens as you take this forward. You've helped me a lot because I would have never though of a gut test. I'll post back next week after I have a meeting with the Dietitian and see what he says. It might help you and others here get to grips with this beast. Fingers crossed.

 

[Rufous McKinney]

Of course there are those that cant tolerate ssris and certain supplements bit perhaps something to look under consult of a doc

We struggle alot with side effects and what to do with our varied symptoms and challenges.

I wanted to mention something about SSRIs and their side effects.

So many pharmaceuticles come with the side effect DRY MOUTH.

And I can testify what this means to a body thats living on multiple pharmaceuticals. Its a huge depreciation of the quality of your life. Your teeth will crumble, dissolve and fall out of your mouth in your hand.

Want to enjoy a long life of crumbling teeth?

So of course they pushed the SSRI's on me. So the doctor said the ZOLOFT would not include that symptom, and that I could just try it and quit whenever.

All not true. I read the label, its listed in the second sentence.

So I will not take any pharma drug with that side effect. And I see it is listed for my blood pressure pill. I take that, I seem to be surviving that one. I'm willing to try it, but the moment there is a sign of that worsening, I won't continue. I choke. I gag.

Be VERY VERY CAREFUL if you try SSRIs. It took me three months to recover from taking it for three days.