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

[S-VV]

Also, have you done IgG food allergy testing?

 

[Gingergrrl]

Dr Klimas sent me to a cardiologist that knows a lot about POTS and similar disorders. I've been to Dr Grubb, Dr Chemali, and Mayo for POTS and on first impression... this guy is more of a fighter.

I am so glad that you have a Cardio who is really interested in your case and is thinking outside the box.

The first thing out of his mouth after taking a history, symptoms, and a detailed exam... carcinoid tumor. Now, we don't know if I have this for sure but the symptoms and labs kinda line up.

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.

Glad to read the doctors are really digging in to help. As frustrating and depressing as it is, being an 'interesting case' for doctors that are truly wanting to spend the time to help can be a good thing.

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.

I'm starting to lose a little hope that we might not find anything and I'll be packin' back home with a big '?'

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.

 

[kangaSue]

One test actually showed elevated protein in the urine. So now I have to see a kidney doctor.

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)

 

[Belbyr]

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.

 

[kangaSue]

Also the test where you lie flat and raise your head/legs to induce pain, induces pain in me.

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.

 

[CFS_for_19_years]

@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

A study by Bell and Streeten established that the average CFIDS patient has only 70% of normal blood volume. To address this, Dr. Cheney recommends drinking one quart of an electrolyte solution daily on an empty stomach. The best one he has found is Vitalyte (Gookinaid).

Vitalyte is rapidly absorbed into the blood stream through the stomach lining because it is isotonicit matches the chemical concentration of the body's fluids.

When one of our local members asked Dr. Cheney about vitamin IV's, Gookinaid came up. While Dr. Cheney thinks the IV's can be very helpful, he told her that if they are inconvenient or expensive, she could get virtually the same benefit from her regular supplements and drinking Vitalyte. (This assumes there is no problem assimilating supplements.) Because Vitalyte absorbs so rapidly, it acts like an IV.

The glucose concerned some since it's a sugar and sugar feeds yeast. He said that it is not a concern with this product. Vitalyte passes directly from the stomach into the blood and never enters the intestinal tract where the yeast flourishes.

Only fluids similar in concentration to the body's are easily absorbed. Water can cause the cells lining the stomach to swell, and slow absorption. Solutions that are too concentrated can pull water from your body into your digestive tract.

The company was founded by Bill Gookin.

Homemade Replacement for Gookinaid (Vitalyte)
with no Sugar

1 cup Spring Water
1 cup Seltzer Water
1/4 tsp Sea Salt
1/4 tsp "No Salt" Salt Substitute (potassium)

Drink 3 - 4 glasses sipped over ice daily. Observe blood pressure response. Consider stopping if blood pressure rises above 140/90. The type of water or amounts are irrelevant as long as it's some sort of filtered-type of water (not tap) and the ratios are the same.

The potassium has an unpleasant taste. One member adds several drops of stevia and puts an herbal tea bag in the empty 2 liter bottle she uses to hold this mixture. (Something to give it flavor without altering the electrolyte balance: peppermint, peach, raspberry zinger, etc.)

Gookinaid (Vitalyte) increases blood volume, reducing the symptoms of lightheadedness upon standing or when in a warm environment (ie bath).

This information came from our January 2002 newsletter.

From the March 2001 issue of the Cheney Clinic Online Newsletter:

As Dr. Cheney says, Gookinaid increases blood volume without diluting your blood because it has the same concentration of glucose and critical electrolytes (especially potassium, and sodium) as blood. This means that the water, glucose and electrolytes tend to stay in your circulation, instead of being absorbed into the tissues which would cause edema or being excreted by the kidneys, which would cause frequent urination and loss of the electrolytes and water.

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/

 

[Belbyr]

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.

 

[CFS_for_19_years]

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

 

[Belbyr]

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.

 

[Belbyr]

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.

 

[Rooney]

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.

 

[Belbyr]

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.

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.

 

[Gingergrrl]

@Belbyr, have you tried Vitalyte, an electrolyte replacement drink recommended by Dr. Cheney?

@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.

Klimas has wanted me to do the Nuun tablets.

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.

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.

What is the recommended treatment if you test positive for enterovirus via stomach biopsy (or is there not one)?

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.

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.

 

[CFS_for_19_years]

@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.

Good to know!

 

[Belbyr]

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...

 

[perrier]

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...

Why would you not be considered a CFS/ME patient???? If you have enterovirus, etc etc, surely you fit???Puzzling,no?

 

[kangaSue]

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.

https://www.ncbi.nlm.nih.gov/pubmed/27344315
Gastric Enterovirus Infection: A Possible Causative Etiology of Gastroparesis

What is the recommended treatment if you test positive for enterovirus via stomach biopsy (or is there not one)?

Antivirals

 

[Gingergrrl]

Antivirals

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.

 

[Belbyr]

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.

 

[LiLaLu]

@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.