My first visit to see Dr Klimas and team

Belbyr

Senior Member
Messages
289
Likes
611
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.
 
Last edited:
Messages
2,852
Likes
4,192
Location
USA
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

Senior Member
Messages
289
Likes
611
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
 
Messages
82
Likes
230
Location
UK
Glad to hear you are seeing a specialist and really hope the treatments work for you.

Can I ask why they want you to change from Elavil to Doxepin? Did they say?
 

Belbyr

Senior Member
Messages
289
Likes
611
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

Senior Member
Messages
865
Likes
1,571
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

Senior Member
Messages
289
Likes
611
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.