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.
(This is an edit on 8/20/2020. I was discovered to have autoantibodies against N type calcium channel receptors via Gastro specialists in Louisville, KY)
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.
(This is an edit on 8/20/2020. I was discovered to have autoantibodies against N type calcium channel receptors via Gastro specialists in Louisville, KY)
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