My first visit to see Dr Klimas and team

perrier

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Update:

I spoke with Dr Klimas's NP today on test results. We still don't have one of the immunoglobulin tests back but 95% of everything else is back.

The bad news is she told me there have been lawyers involved recently that are cracking down on doctors treating patients outside their state border. So, the NP was limited for some reason as to how we should continue forward. It was a big let down. Now the hope is to get her in touch with my local doctor and see if they can direct her, because I don't think I can travel back to Florida again any time soon.

I have low immunoglobulins (IGG) and I have known about this since the second year of illness (now 13 years). I have done the vaccination test and mounted a huge immune response to the vaccine. So, the doctors didn't think I needed IVIG and insurance was surely not going to pay for it back then.

The clinic was surprised by the negative CellTrend results. They see positives in their POTS predominant patients, what they would have done about it... I don't know?

I show high titers to Parvo and Coxsackievirus, they believed that the Coxsackie could be active...

Autoimmune panels are normal again along with all histamines. Natural killers cells are normal but she mentioned they don't show much cytotoxicity. I'm not quite sure what she meant by this?

There is a lot of stuff I am not mentioning because normal tests aren't worth talking about and I don't have the latest tests in hand...

They were glad I was seeing a local psychologist to see if we might be able to treat the pain and nausea I'm having. They think that there is some realness to visceral hypersensitivity. In the past elavil 25mg was a big help, I was functioning like a normal person and my pain/nausea was about a 2-3 out of 10 on most days and at my worst moments was a 6. I don't know why it stopped working sometime around mid 2018. Now I am around a 5-6 all the time and repeatedly hit 8+ in pain. We might possibly use it again but in higher dosage or try another drug. That's all I have for now.

I'm kinda having a let down because nothing big was found but at the same time my expectations were low because I still know that CFS (if I truly have it) still does not have a test or treatment. I'm anxiously awaiting Dr Ron Davis's presentation in the coming week to Australia. I think they are going to be unveiling some new data and I was very impressed with his presentation on youtube about biomarkers in the fall of 2018.

I must add to those that don't know. I have also seen 3 different POTS specialists: Dr Grubb, Dr Chemali, and Mayo Clinic. None of them have been able to help me. They checked me out for a lot of things, but no therapy or drug they prescribed did anything for me. Elavil and Ativan are the only 2 things that have ever done anything for me.
Dear Belbyr,
Where did you hear that "some new date" was forthcoming Australia. Like everyone else I'm sitting on pins and needles. I heard Ms. Tannenbaum's interview yesterday (I started a thread and posted it) and she is very articulate and crystal clear. The dip for me came when she said there will be treatments in 2 to 3 years. How can the severely ill endure this. So, I'm also eager to hear Dr Davis.
 

mariovitali

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I'm not sure on TBA. I've had ultrasounds and ct scans of the gallbladder along with the other organs. Gallbladder function is normal as well.

Other tests have included:
Endoscopies (4 of them)
Colonoscopy
Capsule Endoscopy
Smart Pill
Gastric Emptying (one showed fast, another showed normal)
Every breath test in the book
Barium Swallow
Vascular Ultrasound
OK so one blood test could be TBA. I also wanted to ask you if you ever had -apart from liver panel- the following blood tests:

-Lactate Dehydrogenase (LDH)
-Aldolase
 

Belbyr

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Update: Klimas has not reviewed anything. She waits for all tests to be in.

I'm trying to get a hold of results of current tests, they are having to be faxed to my local doctor, then given to me instead of faxed directly. What a mess...
 

Learner1

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Er, did anyone order a DNA stool test to evaluate your microbiome, look for Candida, parasites, or other bad actors?

And whether more is not better or worse is not really established. There just isn’t enough research on our disease, or on any disease.
HBOT, much as I like it, has been linked to cataracts, due to... wait for it... too much oxidative stress...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1040267/

Understanding each tool we are using, how to use it properly, risks and benfits is prudent. After all, too much water can kill you...

The resrarch has indicated we tend to be hypoxic. My doctors and I have experimented with ozone IV, UVBI, rectal ozone snd HBOT, testing me beteeen them. I found there seems to be an optimal amount of oxygen for my body, and too much depletes my antioxidants, which, at least for me, tends to raise peroxynitrite levels, which damage mitochondrial membranes and impair mito complex I. Not a good thing.

The gentler exposure of the lower atm HBOT 2-3 times a week for 60-70 minutes seems to be the right balance for me. Obviously, your body may be different.
 

Belbyr

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Abnormal test results so far:

TNFa- 15.58 (< 14.1)

Immunoglobulin subgroup 1- 224.51 (373-961)

NK Cell Enumeration- 327 (98-294)

NK Cell Activity- 5.35% (5.0-21.0%)

Creatine- 2.52 (.50-2.15)

Parvovirus IGG 5.0 (< .09)

Coxsackievirus B5 1:64 (< 1:8)
Coxsackievirus B6 1:16 (< 1:8)
 

Belbyr

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Thanks you, @Belbyr, for the lab results. What lab does she use?
She uses Quest or Labcorp whichever is easiest for you in your local area. The specific immune testing was either done in house or at a lab close to her. They drew about 5-6 tubes for themselves and sent me with a packet of blood test orders for Quest. Quest was about 18-20 tubes.
 

Belbyr

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Update: All tests are in. Received a call from the NP today. They will be sending a letter to my local doctor and to me by fax/mail, signed by Klimas. They really want me to return for follow up and ease for them to speak freely about treatment suggestions. This might be something you want to consider if you become a patient of hers. Be prepared to travel multiple times :(

I will wait for the letter to see what it contains before trying to get back to her physically. I know she is about to be busy with sending doctors off for the Australia seminar and then the NIH speech in early April.
 

Belbyr

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well guys, it seems this illness is getting the best of me. i’m continuing to go downhill and my pain levels are in the 8-10 range out of 10 at all times now. i’m unable to eat, drink, or hardly get out of bed. i don’t know what’s in store for me. i don’t think i will be coming out of this one. now i know how whitney feels and there is nothing worse on this earth
 

perrier

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well guys, it seems this illness is getting the best of me. i’m continuing to go downhill and my pain levels are in the 8-10 range out of 10 at all times now. i’m unable to eat, drink, or hardly get out of bed. i don’t know what’s in store for me. i don’t think i will be coming out of this one. now i know how whitney feels and there is nothing worse on this earth
Dear Belbyr
Yes, there is almost nothing worse; this is a living hell; and this is why I am utterly bewildered as to why decade after decade money has not been put into research. It may well be that the physicians don't see the severely ill; as the latter can't get to the doctors. How slow progress moves. But dear Belbyr, I do have hope, however. Dr Davis and Dr Hanson have profound reasons to push things forward. I do trust we will see some movement soon.
 

kangaSue

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well guys, it seems this illness is getting the best of me. i’m continuing to go downhill and my pain levels are in the 8-10 range out of 10 at all times now.
If nothing else is helping, consider trying a vasodilator med. Even autonomic dysfunction can be a cause of a peripheral bowel blood flow deficiency problem. I found a small dose of nitrate (nicorandil, 5mg) gave significant pain relief within a few hours but even cialis or viagra can be of help.
 

BeADocToGoTo1

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Hi Belbyr,

Sorry to hear about all your struggles. Have you had the following tests done?

1. MRI MRCP with contrast
2. Genova Diagnostics - FMV
3. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin
4. 24 hour fecal fat test
 

Belbyr

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I have not tried those tests but I just sent off a stool test for Klimas that she wanted. It will be looking for a lot of stuff it seems...
 

Belbyr

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I finally got my letter back from NOVA. It appears that they think I have a real diagnosis of Coxsackie along with a depressed total IGG and subclass 1 IGG is depressed. I have elevated B cells, so I got to go get checked for cancers by a hematologist.

It looks like I might be possibly going back to Florida on a one way trip for treatment. Still a lot to do at the moment. I think this will all end in either IVIG or Rituximab for me.
 

BeADocToGoTo1

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I have not tried those tests but I just sent off a stool test for Klimas that she wanted. It will be looking for a lot of stuff it seems...
Hi Belbyr,

They are worth doing in that case. They saved my life and I had to be adamant with the doctors to do them since they were not even looking in the direction of exocrine pancreas (EPI) issues. My body was shutting down, metabolic pathways and mitochondria struggling, pain through the roof, muscles, brain, heart and lungs struggling, bedridden, and ready to step out of life, all essentially due to chronic nutrient deficiencies. My pancreas was not producing enough enzymes to break down food into usable nutrients.

Most doctors just do not have the training or knowledge to recognize these symptoms as linked to pancreatic dysfunction. Nor do they know which tests to do or how to address healing holistically. Of course your case might be completely different, but it might be an important thing to at least cross off the list.

Some more details on the tests added below.

1. MRI MRCP with contrast - Gives a great picture of pancreas and ducts, gallbladder and ducts, liver, stomach, intestines.

2. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

3. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

4. 24 hour fecal fat test - Simple, cheap and tests if you are breaking down fat properly.

Coxsackie might be a red herring since half of the population will test positive for one or more of them. IGM will show a current infection, but otherwise it might be from a while ago.

Wish you strength! If you have questions you can always pm me as well.
 
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