My first visit to see Dr Klimas and team

Belbyr

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Be expected to spend over a grand but not over 2 grand, I just don't know how much they vary the testing and time spent with new patients. I just don't want anyone to get mad at me if they go and then get a bill for 2-3 grand.
 

nsdn

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Thanks for the reply. What is the email or telephone where to ask for details? Greetings.
 

Belbyr

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Thanks for the reply. What is the email or telephone where to ask for details? Greetings.
Have you spoken with anyone at the clinic yet? I would call the main line and see what you get first if you haven't already.
 

Belbyr

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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.
 

kangaSue

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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.
I don't think I mentioned earlier that MALS causes POTS in about 20 % of cases and many find that fixing MALS resolves POTS too. Possibly to do with the vagus nerve being compressed in the celiac plexus too.

Many of those whose POTS doesn't resolve also have the co-morbidity of EDS (Ehlers Danloss Syndrome), something else in which POTS quite commonly occurs.
 

Belbyr

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I'm pretty sure my MALS has been exhausted. The surgery was successful in returning blood flow and clearing any nerves that were trapped in that area. We have the CT scans the surgical notes to prove it. I felt no better after surgery and continued to be bed bound for 5 months following that surgery, due to my illness not the surgery.

Elavil gave me my life back then stopped working around middle of 2018. The surgery was in 2015. I don't have any signs of EDS, I score a '0' on all the tests for that.

I'm beginning to think there could be a MicroRNA problem with what seems to be as my doctors said, the worst case of IBS in the world... :bang-head:
 

Inara

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Have you tried a short test of H1 + H2 antihistamines? Sometimes that can help if gastric issues such as you describe are due to MCAS. The GI system has a lot of mast cells.......... Most MCAS doctors recommend trying this as a first step to see if you notice an improvement if symptoms indicate MCAS may be a possibility.
Mast cells and neurons (of the vagus nerve for example, but of course not only that) in the gut "communicate" with each other, i.e. mast cells substances trigger substances like cytokines, neurotransmitters etc., and cytokines, neurotransmitters etc. cause mast cells to release their substances, like histamine. While calcium signaling can increase the number of mast cells, neurons can increase histamine release (while the mast cell numbers remain unchanged). So it could be that mast cell activation leads to, for example, neuroinflammation, which again "tackles" mast cells and so on...And on the other hand, neuroinflammation can lead to mast cell issues which often lead to gut problems. Maybe that's the connection of "mast cell problems" and autonomic nervous system dysregulation.
 
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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?
Parvo B19? This study shows successful IVIG treatment in 3 cases.

This study says that natural killer cell cytotoxicity is decreased in the ME patients.
 

kangaSue

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I'm pretty sure my MALS has been exhausted. The surgery was successful in returning blood flow and clearing any nerves that were trapped in that area. We have the CT scans the surgical notes to prove it. I felt no better after surgery and continued to be bed bound for 5 months following that surgery, due to my illness not the surgery.
Sorry, I didn't realise you had already had surgery for MALS. Not that that change things however and if you join any MALS support group, you will find a significant percentage of those having surgery get little relief of their symptoms.

In those whose doctors persist in getting to the bottom of it (and that is very few of them), it invariably still turns out to be an issue of blood flow, but from transient compression of the celiac artery. Celiac artery compression of a long standing nature weakens the artery wall so it can be easily occluded again with activity but not something which can be actively monitored.

As I mentioned above, this causes a problem at the microvascular level, even when a (static) CTA shows patent blood flow in the celiac artery. The only way to test for this is in doing a Vasodilator Challenge Angiogram. Failing that, the symptoms can sometimes be moderated with taking a vasodilator med.

There are any number of GI's who will rubbish this as the likely scenario and fob the patient off but these are not my thoughts on the subject, this is opinion I received from a GI surgeon whom I have a lot of faith in, and someone who is highly regarded by his peers.
 

Learner1

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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.
How is this possible?

People travel to the Mayo Clinic or the Cleveland Clinic or Mass General or MD Anderson or Stanford all the time for specialist care, just as we ME/CFS patients travel out of state for care. People are in clinical trials alI over the country. I have telemedicine appointments with specialists in Georgia and California that my insurance even supports and I know a patient that traveled 2500 miles to Wake Forest to have a specialized cancer surgery that no doctor in Seattle would touch, which was quite successful.

And, aren't there people who spend half the year in Florida and half the year in NY, NJ, or wherever they came from that might have doctors in either state?

What kind of myopic law are these folks trying to enforce?
 

mariovitali

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@Belbyr

Have you ever tested for Total Bile Acids / TBA? Have you ever tested for gallstones? TBA is a blood test. I wonder why you have so many GI Issues and what tests you have done specifically to identify the cause(s) of these problems.
 

Silencio

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I still want to do the VO2 Max testing on the bike, also she recommended hyperbaric treatments and getting oxygen in since there seems to be evidence coming out that we are low in that area and every time I've gone to the ER my lactic acid levels are up.
Hi @Belbyr, you sound quite severe, and I just wanted to warn you off doing V02 testing. Unless for insurance reasons to prove disability, I don’t think it helps in a treatment plan. I permanently lost about 10 to 15% of function from doing it.. it is dangerous for us.
Also, just one persons experience.. I did 2 months of hyperbaric at 2.4 ATA in a hospital setting. It did nothing st all for me. It is hugely time intensive and not that easy for us to do. I also have not read any evidence that we are low in oxygen availability, although perhaps we cannot use it. (I think Ron Davis has said that we are fine with oxygen getting to cells? Can’t recall)
 

Learner1

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I have used hyperbaric oxygen therapy for about 18 months as a part of my program in a 1.4 ATM chamber, 2-3 days a week for 60-70 minutes.

More is not better. 2.4ATM is a lot more and I'd worry about too much oxidative stress. I'm also 9n an antioxidant program that includes vitamins A, C, E, ALA, and glutathione..
 

Silencio

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More is not better. 2.4ATM is a lot more and I'd worry about too much oxidative stress.
I didn’t have any side effects. It just didn’t work for me. 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.
 

Belbyr

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@Belbyr

Have you ever tested for Total Bile Acids / TBA? Have you ever tested for gallstones? TBA is a blood test. I wonder why you have so many GI Issues and what tests you have done specifically to identify the cause(s) of these problems.
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