My first visit to see Dr Klimas and team (Success in the End)
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I am so glad that you have a Cardio who is really interested in your case and is thinking outside the box.
I don't know much about carcinoid tumor and was wondering if it is ever connected to a paraneoplastic syndrome (or is it always by itself)? I feel hopeful that you will get the proper testing and get to the bottom of this.
I totally agree and it is incredibly helpful when a doctor is interested in your case which I can tell is definitely the case here with Dr. Klimas and all the specialists she is sending you to @Belbyr.
Please do not lose hope, although I relate and know how hard this is. I feel hopeful (from afar) that your case will be solved even though it is taking a long time. Thank you for keeping us posted how you are doing.
I don't know much about carcinoid tumor and was wondering if it is ever connected to a paraneoplastic syndrome (or is it always by itself)? I feel hopeful that you will get the proper testing and get to the bottom of this.
I totally agree and it is incredibly helpful when a doctor is interested in your case which I can tell is definitely the case here with Dr. Klimas and all the specialists she is sending you to @Belbyr.
Please do not lose hope, although I relate and know how hard this is. I feel hopeful (from afar) that your case will be solved even though it is taking a long time. Thank you for keeping us posted how you are doing.
A lot of people who have (or have had) MALS also have a narrowed left renal vein (Nutcracker Syndrome) and this can be a the mystery cause of protein in the urine and can occur without having any impaired kidney function.
(Note that gross or micro hematuria, mentioned in the majority of the literature to be a common symptom of NCS, is absent in about 20% of cases)
(Note that gross or micro hematuria, mentioned in the majority of the literature to be a common symptom of NCS, is absent in about 20% of cases)
Well, the beta blocker the new cardio put me on really jacked things up so I am trying to switch back to the Atenolol Klimas had me on that seemed to keep the heart rate lower without dropping the blood pressure.
I am about to go guns-a-blazin mad. The last 3 days I have been curled up on the floor with severe abdominal pain and nausea. Can't sleep/eat because of it either. Sick of this crap!
I am upping my elavil 25mg to 50mg as step one.
I will be requesting to get sent to Cleveland Clinic to get accessed for doing nerve blocks to stop the abdominal/nerve pain because I think a lot of the nausea is coming from just being in so much pain. Also the test where you lie flat and raise your head/legs to induce pain, induces pain in me. There could be a trapped nerve.
I was in the ER last night and had to deal with a really sarcastic doctor there. I finally got to feeling about 10% better and said get me the F out of here. When I eat it digests and transit time seems fine. Still no results on upper GI barium series and still no results on a carcinoid tumor pumping out catecholamines...
I plan to get out of here on Friday unless someone can give me some proof they can help me. Never been so mad before.
I am about to go guns-a-blazin mad. The last 3 days I have been curled up on the floor with severe abdominal pain and nausea. Can't sleep/eat because of it either. Sick of this crap!
I am upping my elavil 25mg to 50mg as step one.
I will be requesting to get sent to Cleveland Clinic to get accessed for doing nerve blocks to stop the abdominal/nerve pain because I think a lot of the nausea is coming from just being in so much pain. Also the test where you lie flat and raise your head/legs to induce pain, induces pain in me. There could be a trapped nerve.
I was in the ER last night and had to deal with a really sarcastic doctor there. I finally got to feeling about 10% better and said get me the F out of here. When I eat it digests and transit time seems fine. Still no results on upper GI barium series and still no results on a carcinoid tumor pumping out catecholamines...
I plan to get out of here on Friday unless someone can give me some proof they can help me. Never been so mad before.
The Carnett's Sign Test. They can do injections into the epigastric area for some causes of pain that have a positive result to this test. I think lidocaine is used but not sure off hand.
@Belbyr, have you tried Vitalyte, an electrolyte replacement drink recommended by Dr. Cheney? It used to be called Gookinaid, named for the developer Bill Gookin. I prefer this to plain water also, although I'd say only about half my fluid intake comes from Vitalyte.
Dr. Cheney recommended Vitalyte for electrolyte replacement:
https://www.dailystrength.org/group...sion/cfs-patients-have-70-normal-blood-volume
From the March 2001 issue of the Cheney Clinic Online Newsletter:
Vitalyte: 68mg Sodium / 92mg Potassium / 10g carbs
https://www.vitalyte.com/products.html
https://www.vitalyte.com/news/category/medical (Discusses using Vitalyte to help with CFS)
There's also a thread here about making your own electrolyte replacement drink:
https://forums.phoenixrising.me/threads/electrolyte-rehydration-recipes-ingredients.3900/
Dr. Cheney recommended Vitalyte for electrolyte replacement:
https://www.dailystrength.org/group...sion/cfs-patients-have-70-normal-blood-volume
From the March 2001 issue of the Cheney Clinic Online Newsletter:
Vitalyte: 68mg Sodium / 92mg Potassium / 10g carbs
https://www.vitalyte.com/products.html
https://www.vitalyte.com/news/category/medical (Discusses using Vitalyte to help with CFS)
There's also a thread here about making your own electrolyte replacement drink:
https://forums.phoenixrising.me/threads/electrolyte-rehydration-recipes-ingredients.3900/
Klimas has wanted me to do the Nuun tablets. They are very high in sodium compared to an off the shelf sports drink. If I drink one, I have to use at least 2-3x the amount of water which they recommend is 16oz.
But that looks interesting, might play around with it.
But that looks interesting, might play around with it.
If you can't try each flavor one at a time from their sticks, then the least offensive to a sense of nausea could be lemon or fruit punch.
Other places to buy Vitalyte are:
https://www.amazon.com/Vitalyte-Electrolyte-Sports-Replacement-Supplement/dp/B01KY0E23Q
and https://www.luckyvitamin.com/m-2360-vitalyte
Other places to buy Vitalyte are:
https://www.amazon.com/Vitalyte-Electrolyte-Sports-Replacement-Supplement/dp/B01KY0E23Q
and https://www.luckyvitamin.com/m-2360-vitalyte
I just got my radiology report back from upper GI series. Looks like a 1cm 'spiculated nodule was found in the right apex'. I don't know if these are found normally or not? Could it be causing symptoms... don't know?
I think everything on the GI part looked normal, trying to understand radiology jargon.
I think everything on the GI part looked normal, trying to understand radiology jargon.
Dr Chia's staining for Enterovirus. Mine came back very positive and we know I have low immunoglobulins. I just wished there was more research on this because I know it is not an FDA approved test and there have been positive stains in healthy controls.
spiculated nodule of GI https://www.google.com/search?clien...gws-wiz.......0i71j0j0i67j0i22i30.IxFY0gvvtWo
So, it could be anything, but Chia report supports infection. At least you're getting somewhere.
So, it could be anything, but Chia report supports infection. At least you're getting somewhere.
I think it is in the lung after searching for what 'right apex' means. It could be nothing, I have a pulmonary DR friend that said they are seen fairly common in people living in the mid south region of the U.S. but he did not see the films, just the radiology report.
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@CFS_for_19_years I remember when you recommended Vitalyte for me back in 2014 and it was very helpful. I ordered the citrus and fruit punch flavors on Amazon (if I recall correctly) and they taste much better than other electrolyte drinks.
I used to do Nuun tablets as well but remember that I had to be careful that I was buying the caffeine free ones b/c I could not tolerate any caffeine whatsoever at that time due to POTS/ tachycardia.
What is the recommended treatment if you test positive for enterovirus via stomach biopsy (or is there not one)?
I was confused about this part b/c if you had an upper GI series, would it show nodules inside of the lung? I never had GI testing but I have had three high resolution lung cat scans (in 2015, 2016, and 2017) b/c the calcium channel autoantibody that I have is often paraneoplastic with small cell lung cancer.
My cat scans were all clear but they did show some very tiny nodules (under 2 mm) which were considered an "incidental finding". The lung nodules had not grown between the 2016 and 2017 scans so they were not of concern. I don't know if this is relevant to your case but just wanted to mention it.
I used to do Nuun tablets as well but remember that I had to be careful that I was buying the caffeine free ones b/c I could not tolerate any caffeine whatsoever at that time due to POTS/ tachycardia.
What is the recommended treatment if you test positive for enterovirus via stomach biopsy (or is there not one)?
I was confused about this part b/c if you had an upper GI series, would it show nodules inside of the lung? I never had GI testing but I have had three high resolution lung cat scans (in 2015, 2016, and 2017) b/c the calcium channel autoantibody that I have is often paraneoplastic with small cell lung cancer.
My cat scans were all clear but they did show some very tiny nodules (under 2 mm) which were considered an "incidental finding". The lung nodules had not grown between the 2016 and 2017 scans so they were not of concern. I don't know if this is relevant to your case but just wanted to mention it.
Good to know!
I think I have had my last appointment with Klimas and her nurse today. I've had about 4 really bad days in a row prior.
We went over Dr Chia's findings and I will be starting the Equilibrant which I think has shown to reduce enterovirus in follow up biopsies, but I'm not sure on that. It is what Dr Chia treated his son with. Could this be a big help, we don't know...?
We went over the stool tests and they said the inflammation levels were extremely high. So, they are doing the typical probiotics, digestive enzymes, fiber, and adding EnteraGam. They're hope is it will help take care of whatever is inflaming the digestive tract.
They don't really consider me a ME/CFS patient but for sure a POTS patient. In my opinion, I think it's the same spectrum especially after the presentations at the NIH. We all have blood flow issues. I am to continue atenolol for that. We may look at Mestinon later, we just really want to try to get this horrific stomach stuff figured out.
I see the gastro doctor tomorrow for follow up on the upper GI series. The radiology report noted a growth in my lung and there was also a note about the esophagus. I'm not good at decoding radiology talk...
If nothing big comes of the appointment tomorrow, then it will look like I am going home. I'm glad we are taking care of the lower gut and I really really hope it can help this god-awful nausea and pain I have 24/7. If it doesn't, I really don't know what else to do. I've had every GI test there is except for an invasive manometry test. We also have to start getting me off Ativan, but it is the only drug that even remotely helps the nausea and upper GI pain. I never feel my body craving it when I go 1-2 days without it, but my gut does.
Still don't have some test results back, but I'm ready to get out of Florida and at least be able to suffer at home instead of down here at the tip of Florida. I still have my picc line in for fluids when I'm too sick to eat or drink. I'm down 22 pounds now after my health falling off a cliff in November. The picc is just another thorn in my side when trying to sleep, shower, or having to move anything... wish I could get 10-20% better so I can pull it for good. Anyways, that's it for now...
We went over Dr Chia's findings and I will be starting the Equilibrant which I think has shown to reduce enterovirus in follow up biopsies, but I'm not sure on that. It is what Dr Chia treated his son with. Could this be a big help, we don't know...?
We went over the stool tests and they said the inflammation levels were extremely high. So, they are doing the typical probiotics, digestive enzymes, fiber, and adding EnteraGam. They're hope is it will help take care of whatever is inflaming the digestive tract.
They don't really consider me a ME/CFS patient but for sure a POTS patient. In my opinion, I think it's the same spectrum especially after the presentations at the NIH. We all have blood flow issues. I am to continue atenolol for that. We may look at Mestinon later, we just really want to try to get this horrific stomach stuff figured out.
I see the gastro doctor tomorrow for follow up on the upper GI series. The radiology report noted a growth in my lung and there was also a note about the esophagus. I'm not good at decoding radiology talk...
If nothing big comes of the appointment tomorrow, then it will look like I am going home. I'm glad we are taking care of the lower gut and I really really hope it can help this god-awful nausea and pain I have 24/7. If it doesn't, I really don't know what else to do. I've had every GI test there is except for an invasive manometry test. We also have to start getting me off Ativan, but it is the only drug that even remotely helps the nausea and upper GI pain. I never feel my body craving it when I go 1-2 days without it, but my gut does.
Still don't have some test results back, but I'm ready to get out of Florida and at least be able to suffer at home instead of down here at the tip of Florida. I still have my picc line in for fluids when I'm too sick to eat or drink. I'm down 22 pounds now after my health falling off a cliff in November. The picc is just another thorn in my side when trying to sleep, shower, or having to move anything... wish I could get 10-20% better so I can pull it for good. Anyways, that's it for now...
https://www.ncbi.nlm.nih.gov/pubmed/27344315
Gastric Enterovirus Infection: A Possible Causative Etiology of Gastroparesis
Antivirals
Gastric Enterovirus Infection: A Possible Causative Etiology of Gastroparesis
Antivirals
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Thanks and I was not sure if there was any specific treatment when enterovirus is found in the stomach biopsy. I tested positive (several years ago) for Coxsackie B4 and Echovirus 11 (on ARUP testing) but the titers were lower than 1:320 (which I believe is what Dr. Chia considers a current vs. past infection) and I did not have a stomach biopsy.
Well, things changed. I went to see the GI doctor and got really really sick and she sent my by ambulance to the ER. Things have been so bad!
She came by to visit that afternoon right as they were kicking me out. She looked at the studies and found that there is something wrong with the esophagus and part of the bowel looks to be inflamed or stretched. She is sending me to another doctor that knows more about these things tomorrow.
The POTS doctor called me at 10:30pm to see how things were going. He is going to set me up with a rheumatologist because he feels there is just something not right. He thinks my pain levels are way too high to be typical POTS or CFS. It also seems that on a repeat 5HIAA test, my levels are high again.
She came by to visit that afternoon right as they were kicking me out. She looked at the studies and found that there is something wrong with the esophagus and part of the bowel looks to be inflamed or stretched. She is sending me to another doctor that knows more about these things tomorrow.
The POTS doctor called me at 10:30pm to see how things were going. He is going to set me up with a rheumatologist because he feels there is just something not right. He thinks my pain levels are way too high to be typical POTS or CFS. It also seems that on a repeat 5HIAA test, my levels are high again.
@Belbyr I am so sorry you have to go through this.
I think it is very wise to meet with a rheumatologist as there are AI diseases, that can wreck havoc on the body and the connective tissue or GI tract. Regarding your high 5HIAA - have you been checked by an endocrinologist? I mean some things like MEN usually show up in family history, but endocrinologic disturbances can enhance and induce pain, too... and they can be a result of cancer or autoimmunity, too.
I think it is very wise to meet with a rheumatologist as there are AI diseases, that can wreck havoc on the body and the connective tissue or GI tract. Regarding your high 5HIAA - have you been checked by an endocrinologist? I mean some things like MEN usually show up in family history, but endocrinologic disturbances can enhance and induce pain, too... and they can be a result of cancer or autoimmunity, too.