gm286
Senior Member
- Messages
- 149
- Location
- Atlanta, GA
Hello!
I've been building up to this post for a while, so anyone who actually reads through it and manages to be able to give me feedback on any or some of my concerns, would be really helping.
I was dx'd with CCI early this year. I live in the South of France and feel like I'm not getting the help I need here, I may need to travel to Paris for pushing my leads/test results further. I have attached all of the recent tests I've done -- viral, neurotransmitter, metabolic, bacterial results and more -- in case anyone would be able to understand what's going on and point me the right way.
I think what I need the most right now is a plan of action. I'm extremely open to hearing general brainstorms because I'll use anything I can get. My most basic problems seem to not go away, and then some. Tangentially -- I am not covered by healthcare here yet, so what I have is financial support from family in order to proceed, and they are helping generously. What I'm coming to see, though, is that without a proper plan and without really competent doctors, I'm not getting where I'd like to be. This is why I feel like I must post here at all cost, PE is replete with excellent advice.
I want to get a big problem out of the way. I am dealing with vision issues which I do not think are floaters at this point. Macular degeneration / uveitis groups urged me to see a retinal specialist asap. I'm not sure if I am bringing this on with smoking (I am trying to quit) and if intracranial hypertension or oxidative stress are not making this worse. My central vision is disturbed with a blurry smear in both eyes. The smears float very quickly or most of the time into center view and cloud/fade the letters I am reading, etc.
I want to talk about the test results I've attached as well. I've spoken with @Learner1 not long ago and shared the results, and autoimmunity/immunodeficiency was brought up (low CD8 high IL2R). My EBV is up and down and neither I nor the doctors who see my tests know what to make of it. Some dismiss it entirely while others acknowledge the problem but it seems no initiative is taken at all to address it. The doctor I saw in Nice (France) who ran these latest tests said he preferred not to go down the route of antivirals et. al. At the same time, he was willing to say "We'll put you on probiotics, omegas, and GABA (vitamin supplement) and I hope you'll come back in three months time and tell me you're doing fine."
This is obviously not working for me. My gut is largely better than it ever has been in ten years, but I don't think anything else is really sorted or addressed. I wouldn't mind the dismissal of antivirals at the time being, except I feel that there are a host of tests which could get me closer to understanding potential autoimmunity/immunodeficiency, but I think I may just be living in the wrong area to further all this. Medicine here is not what it is in the U.S., and I ought to be keenly aware of that as I proceed.
My eyesight is a big issue so I think I'm going to need to tackle that ASAP. It's super distressing. I just feel like it's time I identified an immune/autoimmune process if there was one, and I just don't know how to proceed. Should I keep seeing a certain local doctor and get him to sign off on a Nutreval test? I was advised to run an amino acid panel, lipid panel, homocysteine, RBC magnesium, leucine, isoleucine, valine, lysine, tyrosine, and theanine. Do I get a doctor to sign off on all this and check for it with Nutreval? How quickly should I prioritize this over autoimmunity investigation?
There's Cell Trend in Germany. I just figure if I ran nutritional panels, that I could share them on here and get sound advice and correct with the appropriate nutrients. But if I looked at autoimmunity, I would have to see a competent doctor who could perhaps then help me look at medical options, allopathic treatment, or whatnot.
I'm sorry that this is long-winded. I received substantial financial help and I just figure that if I asked here first, someone might be able to help me set a plan of action and I wouldn't feel as alone as I already am figuring all this out. It gets really overwhelming... I mean, should I take a shot at a competent autoimmune doctor in Paris? How complete is the Cell Trend panel? Should I ask for a more complete panel from the doctor?
Should I just go all the way and see an ME/CFS doctor in Boston? I'd heard of a competent lady at Mass General Hospital. I just feel like I shouldn't be looking too far at this point, and just focus on Europe at the very least.
I don't even know if bringing up symptoms is necessary at this point. I tend to get exhausted, overwhelmed during the day, depend a little too much on stimulants. I can get anxious / antisocial easily but I've come a long way. Waking up in the morning is almost impossible for me, this is perhaps the oldest problem. I get PEM, I feel the need to recover often. My brain takes forever to start up in the morning, I get joint pains way too easily. I can go on.
I sincerely thank anyone who has actually read through all this and can come up with suggestions, also feel free to PM me. It's just a lot to handle on my own, and I'm thinking therapy would also help me get through it. Voilà. Good day to everyone, you are all incredible.
I've been building up to this post for a while, so anyone who actually reads through it and manages to be able to give me feedback on any or some of my concerns, would be really helping.
I was dx'd with CCI early this year. I live in the South of France and feel like I'm not getting the help I need here, I may need to travel to Paris for pushing my leads/test results further. I have attached all of the recent tests I've done -- viral, neurotransmitter, metabolic, bacterial results and more -- in case anyone would be able to understand what's going on and point me the right way.
I think what I need the most right now is a plan of action. I'm extremely open to hearing general brainstorms because I'll use anything I can get. My most basic problems seem to not go away, and then some. Tangentially -- I am not covered by healthcare here yet, so what I have is financial support from family in order to proceed, and they are helping generously. What I'm coming to see, though, is that without a proper plan and without really competent doctors, I'm not getting where I'd like to be. This is why I feel like I must post here at all cost, PE is replete with excellent advice.
I want to get a big problem out of the way. I am dealing with vision issues which I do not think are floaters at this point. Macular degeneration / uveitis groups urged me to see a retinal specialist asap. I'm not sure if I am bringing this on with smoking (I am trying to quit) and if intracranial hypertension or oxidative stress are not making this worse. My central vision is disturbed with a blurry smear in both eyes. The smears float very quickly or most of the time into center view and cloud/fade the letters I am reading, etc.
I want to talk about the test results I've attached as well. I've spoken with @Learner1 not long ago and shared the results, and autoimmunity/immunodeficiency was brought up (low CD8 high IL2R). My EBV is up and down and neither I nor the doctors who see my tests know what to make of it. Some dismiss it entirely while others acknowledge the problem but it seems no initiative is taken at all to address it. The doctor I saw in Nice (France) who ran these latest tests said he preferred not to go down the route of antivirals et. al. At the same time, he was willing to say "We'll put you on probiotics, omegas, and GABA (vitamin supplement) and I hope you'll come back in three months time and tell me you're doing fine."
This is obviously not working for me. My gut is largely better than it ever has been in ten years, but I don't think anything else is really sorted or addressed. I wouldn't mind the dismissal of antivirals at the time being, except I feel that there are a host of tests which could get me closer to understanding potential autoimmunity/immunodeficiency, but I think I may just be living in the wrong area to further all this. Medicine here is not what it is in the U.S., and I ought to be keenly aware of that as I proceed.
My eyesight is a big issue so I think I'm going to need to tackle that ASAP. It's super distressing. I just feel like it's time I identified an immune/autoimmune process if there was one, and I just don't know how to proceed. Should I keep seeing a certain local doctor and get him to sign off on a Nutreval test? I was advised to run an amino acid panel, lipid panel, homocysteine, RBC magnesium, leucine, isoleucine, valine, lysine, tyrosine, and theanine. Do I get a doctor to sign off on all this and check for it with Nutreval? How quickly should I prioritize this over autoimmunity investigation?
There's Cell Trend in Germany. I just figure if I ran nutritional panels, that I could share them on here and get sound advice and correct with the appropriate nutrients. But if I looked at autoimmunity, I would have to see a competent doctor who could perhaps then help me look at medical options, allopathic treatment, or whatnot.
I'm sorry that this is long-winded. I received substantial financial help and I just figure that if I asked here first, someone might be able to help me set a plan of action and I wouldn't feel as alone as I already am figuring all this out. It gets really overwhelming... I mean, should I take a shot at a competent autoimmune doctor in Paris? How complete is the Cell Trend panel? Should I ask for a more complete panel from the doctor?
Should I just go all the way and see an ME/CFS doctor in Boston? I'd heard of a competent lady at Mass General Hospital. I just feel like I shouldn't be looking too far at this point, and just focus on Europe at the very least.
I don't even know if bringing up symptoms is necessary at this point. I tend to get exhausted, overwhelmed during the day, depend a little too much on stimulants. I can get anxious / antisocial easily but I've come a long way. Waking up in the morning is almost impossible for me, this is perhaps the oldest problem. I get PEM, I feel the need to recover often. My brain takes forever to start up in the morning, I get joint pains way too easily. I can go on.
I sincerely thank anyone who has actually read through all this and can come up with suggestions, also feel free to PM me. It's just a lot to handle on my own, and I'm thinking therapy would also help me get through it. Voilà. Good day to everyone, you are all incredible.