My first visit to see Dr Klimas and team

Belbyr

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I thought I would write a little update after the website maintenance was done. As of right now I am still in a very deep struggle and have been feeling the worst I have ever been these last 3+ months. We are not totally sure why but hoping to find out.

I was so sick the day I showed up to the clinic, I crawled in through the front door of their super nice facility. The guard came over to help me and wheelchaired me up the elevator to where I needed to go.

Immediately her nurses started tending to me. Getting me into a room, asked me if IV fluids make me feel better to which I said, "yes, sometimes". I was initially set up with one of her NP's to get copies off all my past tests, get my story of how everything started, a symptoms list, etc.

We agreed that I am definitely POTS with a lot of gastro problems and it is 'to be determined' if it is just POTS or if a more classic CFS presentation is there too... They drew about 5-6 vials of blood in there. I would return home the next day with a lot of labs still to do back in my hometown. Their NP printed out a packet, all I had to do was hand it to the nurse at Quest Labs.

I just got done with somewhere around 20+ vials being drawn, about 5 urinalysis taken, still have to do a 24hr urine, they also want me to do the CellTrend test and check all autoantibodies to see if there are any levels that are way up there.

They mentioned my elevated C4A, elevated norepinephrine, and immune deficiency on prior tests. I don't know exactly what they are testing me for on the new tests but I know it will be a lot.

Dr Klimas came in about halfway through the appointment. She wanted to meet me and the family. Everyone in there including Klimas are full of energy and aggressive. You can tell they all enjoy what they do. She wanted to try some POTS treatments on me while we are getting all the testing done.

Right now I am on Florinef, they want me to change from Elavil to Doxepin, and start the low dose of LDN. I would say in the overall time spent, I was with the NP for about 4hours and about 1.5 of those hours, Dr Klimas was in there as well.

She told us about the system reset and how everything connects in the body. She also mentioned the upcoming NIH meeting and maybe the NIH will start getting aggressive with funding. She had to get to another patient who had been waiting a while, but I was going to ask her more about how the studies are going and if there had been any interesting findings that have not been published...

So, I am back at home. On the new meds and struggling like hell, just as I was before I left to go see them in Florida. If we could just find or make a breakthrough on my gastrointestinal stuff, I would feel so much better... We will see.
 
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Hang in there, the treatments really help but they take time. I saw improvement day 2 of Florinef
Edit: Also, the LDN they started me way to high, 1.5mg I had to dilute it and do a day yes a day no (on destilled water) and I did much better w a gradual increase.
 

Belbyr

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Good to know, seven. I spent last night in the ER again. That was my 9th time in 1.5 months 😔. Woke up this morning feeling like I need to go back.

I think I’m just going to lay on the couch, not eat, and think about other things today...My body needs a huge break
 

Belbyr

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Elavil stopped having positive effects after about 2 years of declining help.

The new drug is in the same class as elavil, there is a chance it may metabolize just like the elavil was doing. Klimas said it can take up to a year or two to get patients on the right track.

I just sent off my cell trend labs today. I’m also going to be getting a picc line because getting fluids and food down has been hell.

I’m willing to bet some of the muscarinic autoantibodies come back abnormal for all this smooth muscle pain and spasm I am having.
 

perrier

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Elavil stopped having positive effects after about 2 years of declining help.

The new drug is in the same class as elavil, there is a chance it may metabolize just like the elavil was doing. Klimas said it can take up to a year or two to get patients on the right track.

I just sent off my cell trend labs today. I’m also going to be getting a picc line because getting fluids and food down has been hell.

I’m willing to bet some of the muscarinic autoantibodies come back abnormal for all this smooth muscle pain and spasm I am having.
Hello Belbyr,

Did you get any sense from Dr Klimas about a treatment that is more targeted to this illness. Did she convey any time lines about this?
And saying it will take up to a year or two to get a patient on the right track is not easy. Do you happen to know if she does the same testing that Dr Kaufman does? Any news you have is most welcome. I am so sorry you are suffering so much.
 

Belbyr

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I really would have loved to stayed and talked with her about everything. She did say that she is super enthusiastic with the computational modeling and the trials going on in GWS reset. She said the post menopause women should be starting soon (I thought it already had) and the funding for the Phase I of the men's is past the half way point now.

I don't know what she or Dr Kaufman test, all I know is I'm missing about 30-35 vials of blood on me now :wide-eyed:. Only news worthy stuff is she believe there is brain inflammation going on and there will be a list of things we can take to reduce that, which does cross the blood brain barrier. She also tries to stamp out any autoimmunity going on in her patients. Many walk in with an autoimmune condition they never knew they had.

I now have to wait about 4-6 weeks for all the results to start coming back in, this will be done over the phone.

Oh and she also wants me to get check for cervical cranial instability since I got sick during my football years. It's not likely but need to rule it out. She also reported many patients feel better after doing a month's worth of hyperbaric treatments.
 

kangaSue

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@Belbyr I have a similar history of requiring frequent visits to ER to sort out severe abdominal pains from a messed up GI system and having severe gastroparesis.

Just wondering how your GI problems evolved (rapid or slow onset) and whether symptoms worsen around eating, where you get pain (epigastric, RUQ, LUQ etc, always there or transient). I have found some answers to my own problems and which are relatively uncommon things involving abdominal vascular anomalies and not something that many doctors seem to give any thought to so I might be able to offer some pointers.
 

Belbyr

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I am starting to see a phycologist group about my issues while waiting on all of Klimas's tests. I don't think I have Gastroparesis because I have had a normal smart pill test and one gastric emptying test showed slightly fast while another showed normal... I also did an EGG (like an EKG) test with water loading to check the peristaltic waves, that too was normal.

I have chronic nausea that varies from mild to holding a toilet. I have abdominal pain and bloating that ranges from mild to crying on the floor. They can be independent of each other or hit all at once.

No nausea meds work at all. The only thing that has helped is Ativan, so Klimas and my phycologist think my pain and nausea is from spasm or rigidity in the stomach/intestines. One gastro doctor saw my stomach spasming while doing my endoscopy. 25mg of elavil made my condition much better for about 3=4 years and I got really sick when I attempted to get off.

Now I'm bad sick while being on elavil. My phycologist said that remaining at baby doses of antidepressants can have a negative effect in the long run and higher doses are needed for lasting effects. We may change the med or increase the elavil.

I was worried increasing it will just cause it to lose effectiveness again but he said that was wrong, everyone has a certain threshold they have to reach. But, he totally believes the pain is real and that I am sick.
 

wigglethemouse

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I have chronic nausea that varies from mild to holding a toilet. I have abdominal pain and bloating that ranges from mild to crying on the floor. They can be independent of each other or hit all at once.
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.
 

kangaSue

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Doesn't really paint a clear picture of anything specific that I know of. I would suggest making sure that it isn't an abdominal vascular compression issue though as these can involve having years of seemingly unrelated symptoms (including POTS) before being an incidental finding in testing for other things.

MALS (Median arcuate ligament syndrome) would be the one to best fit your symptoms. The narrowed celiac artery with this will often cause a bruit so just have any doctor listen to your epigastric area for this. Frequent fruitless trips to the ER for severe abdominal pain are common with this.

SMA Syndrome can cause a spasming of the stomach from transient reversed peristalsis. Both can cause gastroparesis but can also cause all the symptoms of this without having an abnormal gastric emptying study result
Klimas and my phycologist think my pain and nausea is from spasm or rigidity in the stomach/intestines.
Rigidity of the stomach is a common problem in gastroparesis. I appear to be one of very few people who have found that (or have actually tried) a nitrate can relax the stomach to help with gastric accommodation. They can also relax the pyloric sphincter, so can work somewhat like botox to aid in gastric emptying. I only found this out by accident when I trialled a nitrate for suspected Chronic Mesenteric Ischemia and it helped significantly with abdominal pain and allowed me to stop tube feeding and have food orally again without getting nausea and vomiting.
My phycologist said that remaining at baby doses of antidepressants can have a negative effect in the long run and higher doses are needed for lasting effects.
Dr Drossman, an expert in the use of antidepressant meds for GI problems suggests it's better to use two different meds at low dose rather than go to a higher dose of one med as this reduces the chance of side effects that can occur at higher doses of one med.
https://www.ncbi.nlm.nih.gov/pubmed/29274869
We are testing for MCAS and so far everything looks normal in that arena. I have tried histamine blockers to either very little (could be placebo) to no effect.
An increase in mast cell activity is common with GI dysmotility so MCAS is often a red herring. It's worth trying a mast cell stabilizer though (sodium cromolyn or ketotifen) as these can then help with food intolerance issues sometimes. A DAO supplement can help with food histamines too and this enzyme can be deficient with GI issues
 

Belbyr

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I've been Catscanned about 8 times now throughout the course of my illness, many of them in the ER. Dr Koch at Wakeforest knows how to look for blood flow to the intestines. He ordered an ultrasound on me and they did find my celiac artery was narrowed quite a bit but he said it wasn't a big cause for concern because the other arteries are running good.

I later spoke with a vascular surgeon about it in my town and he said there would be a 50/50 chance taking pressure off would give me relief. We did the surgery, blood flow is great now even to this day... symptoms are still terrible.

The only other test we have thought about doing is a barium test where you drink a light weight barium and watch it pass all the way to the colon and then drink a heavy weight barium and do the same. One local gastro thinks my issue could be fast transit but he has a terrible bedside manner and doesn't want to understand the complexity. If I can get out of this 4 month rut I have been in, I will give that test a try. Right now I'm lucky to get out of the house unless it's going to the ER.
 

kangaSue

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He ordered an ultrasound on me and they did find my celiac artery was narrowed quite a bit but he said it wasn't a big cause for concern because the other arteries are running good.
In that case and given your symptoms, I would be very surprised here if the narrowed celiac artery ISN"T the cause of your GI problems and your doctor is typical for the mindset of any of them not experienced with MALS.

This thinking ONLY applies when you have plaque stenosis. If the median arcuate ligament is causing the narrowed celiac artery, it doesn't follow that patent blood flow through the other mesentery arteries will make up for the bowel blood flow deficiency. What in fact can happen is that, with activity or during digestion, the narrowed celiac artery "steals" the blood flow from the superior mesentery artery which screws up the mesentery resistance vessels mechanism of vasodilation/vasoconstriction regulation at the microvascular level and you end up with pain from chronic (non-occlusive) mesenteric (bowel) ischemia. Pain with this can be anything from just a bit of mild discomfort to totally disabling.

The best indication for diagnosing this can be in doing a Doppler ultrasound of the mesentery arteries, doing deep inspiration and exhalation and the celiac artery is most compressed during exhalation. Not a lot of Sonographers know to do this breathing part of the test and just measure your static celiac artery velocity. I did suggest above to first have a doctor listen for a bruit sound in your epigastric area as a possible indicator of MALS (not everyone with MALS has this) but that's not necessary in already knowing that the celiac artery is narrowed.

It's often the case with MALS that celiac artery stenosis is more extensive when they look inside the artery with an IVUS (intravascular ultrasound) during a venogram. You can also confirm it to be MALS in doing a Vasodilator Challenge Angiogram which will reproduce pain symptoms here.
https://www.ncbi.nlm.nih.gov/pubmed/24512402
https://www.ncbi.nlm.nih.gov/pubmed/18799501
https://gastroenterologen.no/2013/11/the-celiac-ganglion-artery-compression-syndrome-cgcs/
 

Mary

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@Belbyr - thanks so much for sharing your experience with Nancy Klimas and her staff. I've long thought I would like to go to her clinic, only they're on the other side of the country. But who knows . . . I am very sorry you've been having such a rough time. I wish I had something to suggest that might help, but I haven't dealt with your issues at all, just garden variety ME/CFS.

Can I ask about the cost of the visit? I think I read once that she takes Medicare but it doesn't look like she does any more. Any info you can give about the cost of the visit and labs would be appreciated.

I hope your visit and all the testing leads to some answers for you --
 

Belbyr

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I hope to give some more updates after my phone call tomorrow. I am also seeing a local psychologist who deals with not only depression but also a lot of pain and he has POTS/CFS/Fibro patients as well that are back into life again. I am hoping the same for me.

Initially Klimas tried Low Dose Naltrexone, Doxepin(sleep), and .1mg Florinef... I've been hospitalized for about half of the days since I have been back from my trip. I am now off everything for a few days now and have had a few 'decent to good moments'.

Lets hope she has a lot more tricks up her sleeve. 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.