Appointment with Dr Klimas
I like to conform to traditions so for spring break I went to Miami ... and to see dr Klimas’ brand new cfs clinic. Below my experience:
First I saw Dr Chahine he is an internist and immunologist. He gathered all the info for Dr Klimas; discussed my previous test results, asked me which symptoms I had, and checked my vital signs. He was very friendly and thorough, made sure we went over everything. Thereafter he discussed my case with Dr Klimas and Dr Klimas drew my blood to test for pathogens and immune function. It was totally weird to have a VIP trying to stick a needle in me ☺ After that me and my mum could go to Dr Klimas office and we discussed my symptoms, treatment possibilities, and a preliminary treatment plan. Dr Klimas was wonderful, brilliant and so charming.
Some interesting things that came up:
xmrv
I tested xmrv+ by VIP labs. She is a bit cautious about xmrv. My feeling is that she does believe it could be a major player, but that some of the recent studies did make her less convinced than she initially was. Also she is not sure how reliable the VIP lab test is because the testing methods are so intransparant.
At present she does not offer xmrv+ specific treatment, but if there are more studies and evidence out there, and more information on potential treatment candidates I think she would start treating this.
Memory problems
She was not sure whether my xmrv infection was responsible for my cognitive problems (memory problems since very young age), she suspected neuro inflammation caused by hhv6, for which she will test me. Many cfs people can’t use parts of their brain. Funny is that my fatigue problems started much later and that despite having no memory I could still go to the university; apparently my brain found cooping mechanisms. A neuro spec scan to confirm inflammation would be too expensive therefore (and because low risk) she has prescribed low dose naltraxone, and suspects that will help.
Endocrinology
My hormones are very low and I have long term amenorrhea. She wants me to see an endocrinologist, and will give me a referral for a good one. She wants me to do a stimulation-inhibition test of the pituitary gland (?) She agreed that my hormonal problems are more likely to be a consequence than a cause of my poor health.
Leaky gut
She was very open for my suggestion that my gut problems may be a big player. She mentioned a leaky gut test, and a way of fixing it; taking antibiotics that kills everything in the gut (I have weird flora) and then build it up with probiotics. I had the feeling that we will look at this in a later stage.
Immune system
She will run many tests to see how my immune function works and whether I have hhv6, lyme etc and will, depending on the results, prescribe immunovir. And she discussed valcyte and valtrex too (for hhv6). She also mentioned Dr Chia’s oxymatrine. It is important to see whether my immune problems are of a autoimmune nature, or as a response to a viral infection. This can be done also by looking at cytokines.
Sleep
Sleep is very important, also for making hormones. I do not have restorative sleep, so she wants me to do a sleep study. Hannah could arrange for me to get a sleep study in Miami in the very same week, so that was great. I am not sure what the treatment possibilities are in this domain, but she does, so no worries there. BTW shealso mentioned ZEO a sleep measuring gadget.
Autonomic/fight flight response
She discussed malfunctioning of the autonomic nervous system. This seems pretty plausible given my very low pulse rate (around 45). I indeed feel like I am ‘hibernating’ all the time. This is fixable apparently. It is not clear to me whether she tested for this, or how this works. I will ask her when I have my skype meeting.
Tilt test
Two days after my meeting I went back to the clinic for a tilt table test. There again Dr Klimas and Hannah were amazing. I totally adore them, I felt like putting them in my suitcase and taking them home ☺. She found that I have orthostatic intolerance/ or autonomic instability. Apparently many cfs’ers have this.
She recommended me to take a break when I exercise after 10 min (this is person specific), and lay flat, also to wear these old people support socks/stockings, to keep my blood from going in my legs and to drink electrolyte drinks for blood volume.
Costs; about 850 for the initial meeting and about 450 for the tilt test + iv (iv is 80 so watch out with that). I probably have some copayments for the lab tests and the sleep test. We will see where that will take me....
UPDATE: depends ofcourse on your insurance; but my lab tests where $350 copayments in total
Plan:
She will refer me to an endocrinologist. She will also write a note for my Dr’s to convince them that I have CFS (I asked her to put a lot of seals and stamps on the document, lol.) I will start taking my LDN and do the electrolyte drinks for blood volume. In a month all results will be in and we will have a skype conference and make a treatment plan. At that point she will probably decide on immunovir and oxymatrine and valtrex etc. Perhaps also think about tests and treatments for leaky gut. I plan to return to Miami in half a year or so.
Ok People. Hope this helps. If you have questions; shoot! I am so excited about Dr Klimas! We are very lucky to have her.
I like to conform to traditions so for spring break I went to Miami ... and to see dr Klimas’ brand new cfs clinic. Below my experience:
First I saw Dr Chahine he is an internist and immunologist. He gathered all the info for Dr Klimas; discussed my previous test results, asked me which symptoms I had, and checked my vital signs. He was very friendly and thorough, made sure we went over everything. Thereafter he discussed my case with Dr Klimas and Dr Klimas drew my blood to test for pathogens and immune function. It was totally weird to have a VIP trying to stick a needle in me ☺ After that me and my mum could go to Dr Klimas office and we discussed my symptoms, treatment possibilities, and a preliminary treatment plan. Dr Klimas was wonderful, brilliant and so charming.
Some interesting things that came up:
xmrv
I tested xmrv+ by VIP labs. She is a bit cautious about xmrv. My feeling is that she does believe it could be a major player, but that some of the recent studies did make her less convinced than she initially was. Also she is not sure how reliable the VIP lab test is because the testing methods are so intransparant.
At present she does not offer xmrv+ specific treatment, but if there are more studies and evidence out there, and more information on potential treatment candidates I think she would start treating this.
Memory problems
She was not sure whether my xmrv infection was responsible for my cognitive problems (memory problems since very young age), she suspected neuro inflammation caused by hhv6, for which she will test me. Many cfs people can’t use parts of their brain. Funny is that my fatigue problems started much later and that despite having no memory I could still go to the university; apparently my brain found cooping mechanisms. A neuro spec scan to confirm inflammation would be too expensive therefore (and because low risk) she has prescribed low dose naltraxone, and suspects that will help.
Endocrinology
My hormones are very low and I have long term amenorrhea. She wants me to see an endocrinologist, and will give me a referral for a good one. She wants me to do a stimulation-inhibition test of the pituitary gland (?) She agreed that my hormonal problems are more likely to be a consequence than a cause of my poor health.
Leaky gut
She was very open for my suggestion that my gut problems may be a big player. She mentioned a leaky gut test, and a way of fixing it; taking antibiotics that kills everything in the gut (I have weird flora) and then build it up with probiotics. I had the feeling that we will look at this in a later stage.
Immune system
She will run many tests to see how my immune function works and whether I have hhv6, lyme etc and will, depending on the results, prescribe immunovir. And she discussed valcyte and valtrex too (for hhv6). She also mentioned Dr Chia’s oxymatrine. It is important to see whether my immune problems are of a autoimmune nature, or as a response to a viral infection. This can be done also by looking at cytokines.
Sleep
Sleep is very important, also for making hormones. I do not have restorative sleep, so she wants me to do a sleep study. Hannah could arrange for me to get a sleep study in Miami in the very same week, so that was great. I am not sure what the treatment possibilities are in this domain, but she does, so no worries there. BTW shealso mentioned ZEO a sleep measuring gadget.
Autonomic/fight flight response
She discussed malfunctioning of the autonomic nervous system. This seems pretty plausible given my very low pulse rate (around 45). I indeed feel like I am ‘hibernating’ all the time. This is fixable apparently. It is not clear to me whether she tested for this, or how this works. I will ask her when I have my skype meeting.
Tilt test
Two days after my meeting I went back to the clinic for a tilt table test. There again Dr Klimas and Hannah were amazing. I totally adore them, I felt like putting them in my suitcase and taking them home ☺. She found that I have orthostatic intolerance/ or autonomic instability. Apparently many cfs’ers have this.
She recommended me to take a break when I exercise after 10 min (this is person specific), and lay flat, also to wear these old people support socks/stockings, to keep my blood from going in my legs and to drink electrolyte drinks for blood volume.
Costs; about 850 for the initial meeting and about 450 for the tilt test + iv (iv is 80 so watch out with that). I probably have some copayments for the lab tests and the sleep test. We will see where that will take me....
UPDATE: depends ofcourse on your insurance; but my lab tests where $350 copayments in total
Plan:
She will refer me to an endocrinologist. She will also write a note for my Dr’s to convince them that I have CFS (I asked her to put a lot of seals and stamps on the document, lol.) I will start taking my LDN and do the electrolyte drinks for blood volume. In a month all results will be in and we will have a skype conference and make a treatment plan. At that point she will probably decide on immunovir and oxymatrine and valtrex etc. Perhaps also think about tests and treatments for leaky gut. I plan to return to Miami in half a year or so.
Ok People. Hope this helps. If you have questions; shoot! I am so excited about Dr Klimas! We are very lucky to have her.
Actually it was not hard to get an appointment at all, they just opened the clinic so no waiting lists yet.
