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My first visit to see Dr Klimas and team (Success in the End)

Belbyr

Senior Member
Messages
602
Location
Memphis
Update: The nurse was wrong, 5HIAA levels are normal so I don't think there is a need for a radioactive tracer body scan. The good thing about Miami is if a doctor doesn't know something, they send you to another doctor that would know.

I have seen 2 more GI doctors. One does surgery on esophaguses and he felt that while the esophagus is enlarged with a narrowed pinch point at the bottom, he doesn't want to operate on anything until more testing is done. He sent me to another GI doctor (same day). The newer GI doctor thinks that I am having a problem of air getting into my GI tract from aerophagia which could be causing some of my issue but not all of it. He thinks there is something wrong with the esophagus as well but doesn't know to what extent. So he is ordering 2 esophageal manometry tests on me. 1 for movement and 1 for 24hrs to see what is going on throughout the day.

There could be some nerves/muscles involved that are causing part of my problem. He still wants me to pursue getting the Dysautonomia figured out and he agreed a rheumatologist is a must.
 

Gingergrrl

Senior Member
Messages
16,171
The good thing about Miami is if a doctor doesn't know something, they send you to another doctor that would know.

Wow, that is great and I wish every city were like this! I'm glad you have been able to see so many specialists and hopefully get to the bottom of this very soon.

There could be some nerves/muscles involved that are causing part of my problem. He still wants me to pursue getting the Dysautonomia figured out and he agreed a rheumatologist is a must.

PLEASE disregard this next part if not helpful but want to mention just in case. I can't remember if you've done one of the Mayo Autoimmune Dysautonomia panels like DYS1 or the GI panel? I am mentioning it b/c I have the LEMS autoantibody and often people with LEMS have difficult swallowing due to muscle weakness. For whatever reason, I've never had difficulty swallowing and instead I had muscle weakness of my lungs and diaphragm that affected my breathing which was literally the most disabling of all of my symptoms. The muscle weakness is now in remission from IVIG & Rituximab and I am wondering if you might have an autoantibody weakening your esophagus?
 

Belbyr

Senior Member
Messages
602
Location
Memphis
I just read this guy's story and he sounds exactly like me, exactly!
I think this could be why the doctors are so astonished by my huge esophagus... I still will be requesting the dysautonomia and GID1 panels. There is a chance my other symptoms (tension headache, muscle tension in neck/shoulder/back, light fatigue, and insomnia) could be stress symptoms caused by the GI issue. Still not sure on the POTS stuff. POTS has never been a life limiting thing for me but it is there.
 
Last edited:

toyfoof

Senior Member
Messages
1,173
Location
Sedona, AZ
- It is my belief that the inability to belch led to the rapid gastric emptying and reduced overall transport times through the GI tract. This lead to fermentation of contents that left the stomach too quickly, which then became a viscous feedback cycle. I suspect this was also the cause of the SIBO, possibly in addition to having high oxygen content throughout the GI tract. This condition will also result in reduced surface area for digestion due to a high gas fraction in the intestines, which decreases the effective length of the entire GI tract and can cause malabsorption.

Oh wow. I’ve never been able to burp, and I also have this issue with rapid gastric emptying, IBS-D, and (I believe but it’s never been tested) malabsorption. I get horrible gas after most meals and I taught myself a long time ago to avoid swallowing air. My difference is that I will vomit to let out the gas, which leads to a lot of awkward situations, especially in public places.

I’ve always thought not being able to burp was some kind of quirk that mostly means I don’t drink carbonated beverages. But maybe it’s more?!

Thank you for posting this @Belbyr ! Are you going to pursue anything based on this? I’m not really clear on how he used the Botox to help?
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Yeah you sound very similar except I don't let out any air at all, I am so tight there. So I just turn into the puff-man nauseated/bloated/abdominal pain from esophagus to all the way down. I wake up in the mornings bloated just as bad. Most people's bloating gets better during the night, not for me...

I have to get these 2 manometry tests done and then see what the doctor says. Botox seems to be the way to go. It allows you to start venting all that air and over time your body learns to burp from then on. A small fraction have to go back for a second botox.
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Screen Shot 2019-04-22 at 12.09.00 PM.png


This isn't good... I think the B cells, NK cells, and TNF-a mentioned earlier in this thread might be myeloma. Fighting this and CFS/POTS is going to be hell, hope to get in to a cancer doctor soon.
 

fredam7

Senior Member
Messages
153
View attachment 32387

This isn't good... I think the B cells, NK cells, and TNF-a mentioned earlier in this thread might be myeloma. Fighting this and CFS/POTS is going to be hell, hope to get in to a cancer doctor soon.

I had the high ratio too , what about in bloodwork?
I had a number of weird labs like this but they said it's the immune system . Honestly , I don't know , I continue to deteriorate too

This is really a mystery what the hell is going on. It might go back in range , don't start any chemo without really thinking about it , it might be "smoldering" or it might be your immune system .

I have no answers other than to say it's interesting considering the shared symptoms and what if it isn't myeloma or what if it is and how do either of us even have it without fitting the typical profile ?
 

Belbyr

Senior Member
Messages
602
Location
Memphis
The blood levels were normal.

I'm thinking it is 1 of 3 things.
1. Cancer
2. Autoimmune something
3. Poor Kidney function (considering the elevated urine protein and creatinine I have had lately)
 

fredam7

Senior Member
Messages
153
I think the urine is more sensitive . Some dr's do just the blood and if it's negative , they move on which is not correct but many think it is . I was a case of bloodwork only and the ratio was high and out of range but what does it mean? . I'm glad they looked at your urine too because something is going on there, it significantly elevated.

It may be your kidneys but your 3 guesses are all I can think of . You are just so sick that one thing seems relevant until the next thing is beating you down and you forget . I forgot about my lightchains until now !

Do you have frequent urination and can't get hydrated ? I can't retain fluids at all.

I also wonder if the immune system being broken down allows things to get out of control . I haven't checked lightchains since IVIg but maybe it normalized . The mystery is what is going on with your immune system that is allowing things to get out of control

I'm not advocating IVIg because that can rain hell on some people, especially with poor GI.

Did you have a fructose breath test? If you can get your GI under control , everything else may get back under control

And I always have to throw out mold . The environment is so toxic that might be why all of us are so ill . There is a test for how well your bone marrow is turning over cells , that's another clue . And watch your WBC count .

I think all the GI and fatigue and the spiral of hell, goes back to the trillion dollar question , what pushed us into illness we can't extricate ourselves out of ? Stress and environmental factors . How do we all get pots or MCAS or small fiber or whatever ? Too many weird disorders .
 

Belbyr

Senior Member
Messages
602
Location
Memphis
@Belbyr Do you have elevated IgM or MGUS?

Not that I am aware of. I've had my first 2 kidney stones in the last 2 years and there are more in there on CT scans. I don't know if that would have anything to do with it... All the doctors must have taken off today down here in Florida for the holiday. Still so much to do... :yuck:

I've been doing IV fluids to stay hydrated with my picc line. I don't guess that would be working the kidneys too much?
 

fredam7

Senior Member
Messages
153
I think IV fluids are good but well, I hate to say I'm not a dr because most dr's are not dr's , but I would think the fluids are a good thing and not hard on the kidneys . You need the fluids . Do you have frequent urinatuon or do the IV fluids work?

It seems a lot of people with these weird disorders have kidney issues . From perfectly fine kidneys to a real problem . sometimes I think
these bad GI causes build ups and the kidneys are working overtime to try to excrete them.

It's probably a good idea to get those other labs people mentioned before a bone marrow biopsy, it's not like you need any more body trauma no matter how small .
 

Gingergrrl

Senior Member
Messages
16,171
Not that I am aware of.

Can you request that one of your doctors check to see if you have elevated IgM and run the tests for MGUS? I think the panel that you posted in post #127 might be the tests for MGUS but I can't quite tell. I am mentioning it b/c I had elevated IgM for several years and it just kept going higher.

My doctor kept monitoring it and thought it was due to autoimmunity (like everything else seems to be in my case) but then he got concerned and ran the panel from Quest for blood and urine to check for MGUS and multiple myeloma. Everything came back negative in my case and then my IgM finally started to lower.

For the last two tests (which were at least six months apart, maybe more?), my IgM is now in the normal range. I just did the test again (just IgM, not MGUS) at Quest a few weeks ago along w/some other tests that I needed to do for ongoing monitoring for Rituximab, and got the results today and my IgM is still in the normal range.

So in my case, my doctor feels it was elevated due to autoimmunity and once the AI was more controlled, the IgM went down. So it is not always due to cancer and I would NOT scare yourself into thinking it is multiple myeloma when it very well may not be.
 

wigglethemouse

Senior Member
Messages
776

Belbyr

Senior Member
Messages
602
Location
Memphis
Thank you for this. It was Dr Klimas's nurse that ran this test and she's been out the last couple days. Hopefully she will know where to take it from here. I hope it's just nothing because I've seen other people with this that got full cancer work ups and nothing ever showed up.
 

Gingergrrl

Senior Member
Messages
16,171
This is a workup I had for MGUS in case it helps
* Serum Protein electrophoresis
https://www.labcorp.com/test-menu/3...ife-serum-and-free-κ-and-λ-light-chains-serum
* Urine Protein electrophoresis
https://www.labcorp.com/test-menu/33841/protein-electrophoresis-random-urine
* Protein Immunofix Electrophoresis, Serum (IgG, IgM, IgA)
* Free Light Chain Ratio
* Beta-2-Microglobulin, Serum
* Reticulocyte Count

This looks very similar to the work-up that I did except that I did it at Quest vs. Lab Corp.

I hope it's just nothing because I've seen other people with this that got full cancer work ups and nothing ever showed up.

I believe it is VERY likely that nothing will show up. I had three yrs of lung cat scans b/c of the LEMS auto-antibody and then I did the tests that wigglethemouse mentioned above (b/c of having elevated IgM for several years) but nothing ever showed up in either case. Sometimes our immune systems are just out of whack (autoimmune in my case) so you get all kinds of weird test results due to autoimmunity that are not cancer.
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Turns out it was the cancer doctor I saw in my home town that told Klimas's nurse to order these tests. I should hear from him tomorrow. I've been having some left flank pain last night and today, kinda weird. Soonest I can get in to do the manometry tests is May 7th here in FL and hotels/rental cars aren't cheap.

Feels like the world is caving in on me mentally. I hope there is a happy ending to this story somehow. :(