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

[perrier]

I have been in the worst shape of my life, the last 48 hours has been me on the floor crying at a 9-10 in pain while throwing all kinds of drugs at it. I was able to pass out only to be worse this morning.

i still am not eating or drinking, I imagine I will be hospitalized soon. I really wish they could put me into a coma, I can’t take anymore. I hope this is not my last post but if it is, so be it.

Dear Belbyr
Have you ever tried sipping Absorb Plus. It was invented by Jini Patel as she has Crohns, and it is used by them. You can live on the stuff. It is a powder and you can dilute it with water or even with aloe (George's Aloe). Ask your mum to look into it. It works like a meal replacement and is predigested. So, it is different from other powders on the market.

Thinking of you. You are crashing badly after the visit....dear Belbyr...

 

[Gingergrrl]

I have been in the worst shape of my life, the last 48 hours has been me on the floor crying at a 9-10 in pain while throwing all kinds of drugs at it. I was able to pass out only to be worse this morning.

Can you contact Dr. Klimas or go to the ER? Do you have family or friends with you in Florida on this trip or are you alone? Please keep us posted

 

[maybe some day]

Might be wise to go to the ER, at least they can stabilize you

 

[Belbyr]

I figured time for another update. I am around day 8 or 9 in Florida. I just visited her suggested gastroenterologist, we are going to do an upper GI barium motility test end of next week. In the mean time we did more blood work looking into the immunoglobulins and the lymphocyte classes to see in more detail what kind of activation is going on in the immune system.

We also ordered a vagus nerve stimulator to try since some researchers are starting to use them and even implant them. We are hoping it can help the GI stuff going on. Still waiting on the detailed stool testing and 2 different 24hr urines.

I think I am starting to slowly put 2 and 2 together. Something in my diet has stopped agreeing with me for some reason. I have had some moments were I felt like I was back down to around my 3-4 out of 10 in pain(and able to work), only to have more days of my pain/nausea being 8+ all day and night. I figured the only thing that can cause these drastic changes in short amount of times is diet. I walk about .5 miles per day and have documented that is not doing anything to me.

I will be seeing an autonomic doctor for re-evaluation. He might send me for a blood volume test...

I want to ask about the new autoimmune findings Mayo and Cleveland Clinic has been finding in young patients with gastroparesis, there is an autoimmune panel for it now.

I must add that 1/2 of the smallest dose of atenolol x2 per day has straightened out my pulse and blood pressure. Now my resting HR is in the upper 50's - low 60's and light activity rates are 85-105 range with no blood pressure fall outs or wooziness.

 

[Belbyr]

There is a chance that my issue could be this:

We are still waiting on one more part of the test to come back. I also just did my upper GI barium series that tracks the esophagus all the way to the start of the colon. No radiologist report yet but the radiology techs were commenting at how all the barium collects right where the small bowel meets the colon. It appeared as if it was stuck for 30 minutes, then about 25% of it finally shot through. There was significant bloating shown as well. They said I was more bloated than when they do barium enema/air colon studies on people!

My theory was that this recent downturn in my health started after a 4 month course of oral antibiotics for a 'supposed' prostate infection. It never was an infection, it was a nerve from exercise. Maybe my theory is right, I probably wiped out a lot of good bacteria and this bad bacteria is wrecking my GI system even more than it was already wrecked in the fist place.

My nausea and bloating have still been awful! But, now I am getting this searing stomach pain that adds to the nausea. I'm down about 30lbs now and spend hours every day bent over on the floor in serious pain. Eating and sleeping is like mission impossible.

Low dose atenolol has kept my HR and BP in very good ranges for the POTS. If I could get some help on the GI side of things, things might start looking up for me.

 

[ljimbo423]

My theory was that this recent downturn in my health started after a 4 month course of oral antibiotics for a 'supposed' prostate infection.

This makes sense to me. If I'm reading your test right. It looks like you have no Lactobacillus at all and that's a really important gut bacteria. You are also low normal in Bifidobacteria, another very important gut bacteria. Have high levels of Citrobacter bacteria, which are a possible pathogen. Also, your fecal secretory IgA is really high.

Fecal secretory IgA (sIgA)is secreted by mucosal tissue and represents the first line of defense of the GI mucosa and is central to the normal function of the GI tract as an immune barrier. Elevated levels of fecal secretory IgA have been associated with an upregulated immune response.

As the principal immunoglobulin isotype present in mucosal secretions, sIgA plays an important role in controlling intestinal milieu which is constantly presented with potentially harmful antigens such as pathogenic bacteria, parasites, yeast, viruses, abnormal cell antigens, and allergenic proteins.

https://www.doctorsdata.com/secretory-lga-stool/#detailed_information

 

[Belbyr]

I agree Jimbo. If there is ever a thing as a microbiome CFS subgroup... I am the poster child.

 

[ljimbo423]

I agree Jimbo. If there is ever a thing as a microbiome CFS subgroup... I am the poster child.

I've had IBS for years with my CFS. I've had a few times where I was in so much pain from it, I would just curl up next to the toilet and wait for the IBS attacks to pass.

It sounds like that was a walk in the park compared to what you are dealing with!

 

[BeADocToGoTo1]

Hi Belbyr,

Have you tried taking pancreatic enzymes (like Creon) with all your meals, or discussed it with the doctor to try? Has Klimas tested you for exocrine pancreatic insufficiency (EPI)?

Are you able to handle some full fat organic plain yoghurt with all the live cultures in them ( you might have to take lactase enzymes with it) or probiotics pills?

 

[Belbyr]

I tried creon years ago, and did not really notice any difference... Perhaps things could be different now? I don't know...

Right now my gut is rejecting things like gatorade, small amounts of fruit juices, sugars, or any carb food items. It sends the pain and nausea sailing even higher and it can take 1.5-2 days of no food to get back to some kind of baseline to where I can nibble again. I was once admitted to the hospital for 2.5 days with no food intake. They gave me gatorade to drink before sending me home. That night I was back on the floor in 10/10 pain and nausea which I think all the gatorade made it worse.

I've ordered some iberogast to try, waiting on it to come in. I think Klimas and team must be tied up from being gone to several conferences in the past week. I have to admit, Klimas's speech at the NIH was a big letdown. It was the same exact canned speech from 2017 at the SolveCFS conference, no progress and still only the 5 or 6 patients in a phase 1 Gulf War trail. No start yet in CFS

 

[BeADocToGoTo1]

Especially if your gut bacteria are out of balance adding sugar bombs like gatorade and fruit juices is horrible advice, but even when you are perfectly healthy. If you need extra electrolytes, get some electrolyte powders to add to your drink (without sugar). Stick with healthy water (no chlorine!!) and tea or coffee (if you can tolerate it).

The only thing I could tolerate for many, many months was home made organic chicken or bone broth soup with a ton of vegetables, a bit of wild rice, a potato made in a slow-cooker. Some nuts and seeds or avocado on the side. If you want I can send you the recipe I use. I still eat this for lunch almost every day. I had to completely reset my diet and slowly, one at a time, re-introduce food elements to see how my body would react. Nothing processed, and especially nothing from a restaurant or cafe.

But I also had to address SIBO and Candida overgrowths with supplements, pre- and pro-biotics, as well as anti-biotics and anti-fungals and a strict diet. This took 2-3 months. Have you done a breath test for SIBO or a urine metabolite test for SIBO and Candida? How about a Candida blood test to see whether it is systemic?

Creon (or any other pancrelipase) was a must in order to break down the food into usable nutrients, and help regain some microbiome balance. If it takes a while for a prescription you can get something like LifeExtension Enhanced Super Digestive Enzymes to take with each meal.

Even with all of this it, it took a long time to turn things around, and a multi-pronged approach was necessary. And to this day, I have to be very careful with anything I eat or drink (I only drink water, tea of coffee still) as my body will slap me very hard.

 

[BeADocToGoTo1]

Before I forget, one more other thing that I took for extra nutrients and calories for a while was medical food like GI Sustain from Metagenics, which is a powder that you mix with water.

 

[Belbyr]

I appreciate your input. This will give me some things to think about.

I typically ate a high carb diet just because the foods where easier to digest and helped me keep my weight up. I still just don't know if the chronic unrelenting nausea and upper abdominal pain is related to the microbiome or not... Perhaps in a systemic way it could alter the motility if there is inflammation or like the recent NIH seminar that showed microbiome getting outside the intestinal walls.

The crazy thing about breath testing is my numbers are always either 0 or really close to 0. I have not been tested for the new SIBO test coming out that checks a new kind of sulfur gas. I would bet that is what I have and the particular bacteria overgrowth Genova shows produces the sulfur gas.

 

[BeADocToGoTo1]

I appreciate your input. This will give me some things to think about.

I typically ate a high carb diet just because the foods where easier to digest and helped me keep my weight up. I still just don't know if the chronic unrelenting nausea and upper abdominal pain is related to the microbiome or not... Perhaps in a systemic way it could alter the motility if there is inflammation or like the recent NIH seminar that showed microbiome getting outside the intestinal walls.

The crazy thing about breath testing is my numbers are always either 0 or really close to 0. I have not been tested for the new SIBO test coming out that checks a new kind of sulfur gas. I would bet that is what I have and the particular bacteria overgrowth Genova shows produces the sulfur gas.

Hopefully the doctor will be able to check all the relevant avenues for you, including parasites, ulcers, h. pylori, infections, inflammatory bowel disease, ulcerative colitis, Crohn’s, etc.

Relentless nausea, pain, bloating was definitely caused by a combination of malabsorbed food, EPI and microbiome dysbiosis in my case. If you have ever added sugar to yeast you might have seen the explosive growth and bubbling. Picture that in your stomach and small intestines with Candida yeast overgrowth. Do you also have acid or silent reflux? Have you ruled out Candida yeast overgrowth?

There were days, weeks, months I was doubled over in pain. Many months of non-stop nausea, where I would have to force any food down, and for a while take anti-nausea medication. Candida showed up in my blood test, which meant it likely had gone through the intestinal wall. The mucosa lining was affected such that anything caused burning in my stomach, including supplements and creon. There is one test I remember for leaky gut, (Cyrex Laboratories -Intestinal Antigenic Permeability Screen) but there are probably others too.

Some other supplements that helped ease intestinal distress were GI Encap, L-Glutamine, and the GI Sustain I mentioned before. If you would like me to provide some feedback on your food intake through a PM, just let me know. Have you kept a food and drink intake diary? Have you looked at a primal or ketogenic diet?

 

[kangaSue]

I also just did my upper GI barium series that tracks the esophagus all the way to the start of the colon. No radiologist report yet but the radiology techs were commenting at how all the barium collects right where the small bowel meets the colon. It appeared as if it was stuck for 30 minutes, then about 25% of it finally shot through. There was significant bloating shown as well. They said I was more bloated than when they do barium enema/air colon studies on people!

It could be worth trying ileocecal valve massage if this is getting stuck. Vagus nerve inputs are required for the proper functioning of the ileocecal valve so Autonomic Neuropathy can be a factor in it sticking, or just not opening in the right sequence.

 

[BeADocToGoTo1]

I went through a few threads to see whether you had mentioned results from Short Chain Fatty Acid (SCFA), pancreatic elastase, or fecal fat levels in stool, but could not find it. Not sure whether you ever had a metabolite test done (e.g. Genova FMV) that shows markers of dysbiosis such as Arabinose, Furan-2,5-dicarboxylic, Citramalic Acid, Phenylacetic Acid, etc. If these do not sound familiar, please discuss them with your doctor as they are also very important to check with the symptoms you have been describing.

I am assuming they have already checked standard blood tests like SED rate, Hs-CRP, ANA, CEA, CA19-9, as well as checked for chlamydia or other infections in the intestines.

 

[Belbyr]

Another update:

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. He was very keyed in, spent a lot of time with me, and was throwing out all kinds of ideas and tests to do that no one has thought to run before. He also had 5 medical students following him today.

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. Klimas found elevated TNF-a along with B cells, they are still up but not crazy. Then looking at a test from 3 years ago I had abnormally high 5-HIAA in a 24hr urine that the endocrine doctor said nothing about, maybe it is nothing... so we are retesting. I also have elevated dopamine in blood and urine. Norepinephrine is elevated lying and standing. After testing negative on all the CellTrend autoantibodies, I'm starting to see his point of view.

He said my resting and active heart rate is way too high for my age and BMI. Something is dumping into my system keeping this going. He also stated my testosterone should not be low, something is not telling it to produce the right amounts.

 

[BeADocToGoTo1]

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.

Carcinoid tumor is definitely something to hopefully rule out. You would think one of the many CT and barium scans you did would have picked that up. It is something my doctor also looked into after a high 24 hour 5-HIAA test result. But, this test can easily be influenced so hopefully that is the case for you too. It is also why an MRI (with MRCP) of the abdomen is a good test to consider if not already done. Low testosterone can also be an indicator of nutrition deficiencies and malabsorption.

Keep us posted if you have the energy.

 

[Belbyr]

Yes it appears the test can be influenced by certain foods and if you exercised that day. I've had many CT scans (recently as well). No one has said anything... I've heard in some cases they can be as small as a pen head and missed. I'm doubtful I have it but with all of us dealing with 'stress' hormone issues with this illness, I can see why they want to double check that.

The cardiologist did the EKG/ultrasound/bubble test on me this morning and all looked normal. A tilt table test might be ordered in the next few days... unsure.

A new thing that has been happening is I have had several tests recently show high creatinine and creatine. One test actually showed elevated protein in the urine. So now I have to see a kidney doctor. Looking back in the past, these levels have been normal 95% of the time. I hate sidetracks... but have to check it out. It could possibly be the serious stress I've been under along with the many days/nights of me curled up on the floor rocking back and forth fighting the abdominal pain/nausea.

STILL waiting on results from Upper GI Series test.

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

 

[S-VV]

@Belbyr something in your microbiome is hurting you. That sIgA is off the charts. I have found activated charcoal, zeolite and cholestyeramine (1.5 hours away from food to avoid malabsoprtion) very helpful for microbiome associated inflammation.

This combination will bind to most bacterial metabolites. It may cause constipation, which can be resolved with high dose oral magnesium.