- Messages
- 73
Hello PR!
I'm extremely overwhelmed with information overload on where to go with my disorder. I've gone through so many things and in the end I'm out years of life, thousands of dollars, and I haven't recovered much, but I've learned a lot and at least ruled out a few things and discovered some clues along the way. Painstakingly slow progress as I'm sure we're all too aware.
I have a write-up of the basics of my situation here. Lots of detail.
I feel like I've narrowed it down to some sort of infection whether viral or bacterial. Everything points to neuro inflammation. I've taken every supplement I can possibly think of in terms of methylation and just basic deficiencies but the most I ever get is a baseline improvement of maybe 25% with my methylation stack and then every so often I'll have a supplement work well only to fizzle out within a day to a month time frame. Even my best supplements I unwillingly have to cycle in order to regain moderate effectiveness. Currently having minor success with CBD oil. I feel like it might be time to stop trying to fill my body up with things that should be there and start trying to remove things that shouldn't.
I think Lyme testing wouldn't be a bad idea, from IGeneX, and possibly co-infections, but I really don't notice any physical symptoms except for stiff muscles / minorly rigid gait / facial expression difficulty / eye contact issues. My hand / wrist stiffness impacted my guitar playing ability. Lyme seems to come with all the achy joints, night sweats, hot / cold, muscle pain / weakness. I have just stable / chronic mild cognitive impairment and muscle stiffness. I mean maddeningly stable.
I've also considered looking at fecal analysis / gut biome testing to look for any red flags. Are there any recommendations on this?
It's odd though because I don't have any IBS symptoms, I do get foggy / tired after eating but never abnormal gas / diarrhea / constipation / bloating / abdominal discomfort / stomach pain.
I've collected a ton of reports on people improving on short heavy cycles of Flagyl (1,2), people going into remission on Rocephin (1,2), people curing neurological symptoms of Lyme with doxycycline (1).
I have doxy, minocycline, and flagyl on hand from an online pharmacy but I don't really want to engage in this without a full frontal assault for Lyme or knowing what I'm doing with Flagyl, aka without testing to prove it might do something. I've read too many stories of people half completing their antibiotic regimens, or even fully completing them, and ending up with terrible fungal issues and the like, completely wrecking their gut biome or strengthening the pathogen.
I've got Medicaid and a Dr very willing to work with me if I provide evidence for what I want to do.
My ability to formulate a game plan has gone down a bit in the last year and I'm just having a hard time assigning things a priority value so I know which way I should go first, I'm spinning my wheels quite a bit so I thought I would reach out a bit and see if anything here rings a bell with anyone and they could help point me in the direction of where I might want to start looking.
If I got the basic Lyme panel through IGeneX (Never covered by insurance) and perhaps the co-infections at Quest Diagnostics (probably covered) and then some sort of fecal analysis, would I have a pretty comprehensive coverage of what I would want to do antibiotic wise? Any advice on which co-infections to get tested for and a respected lab for fecal testing?
I've also tested positive for EBV which I'm trialing acyclovir for (high dose; details in notes) and negative for CMV. I plan to get tested for HHV-6 and a few others as well.
Thanks!
I'm extremely overwhelmed with information overload on where to go with my disorder. I've gone through so many things and in the end I'm out years of life, thousands of dollars, and I haven't recovered much, but I've learned a lot and at least ruled out a few things and discovered some clues along the way. Painstakingly slow progress as I'm sure we're all too aware.
I have a write-up of the basics of my situation here. Lots of detail.
I feel like I've narrowed it down to some sort of infection whether viral or bacterial. Everything points to neuro inflammation. I've taken every supplement I can possibly think of in terms of methylation and just basic deficiencies but the most I ever get is a baseline improvement of maybe 25% with my methylation stack and then every so often I'll have a supplement work well only to fizzle out within a day to a month time frame. Even my best supplements I unwillingly have to cycle in order to regain moderate effectiveness. Currently having minor success with CBD oil. I feel like it might be time to stop trying to fill my body up with things that should be there and start trying to remove things that shouldn't.
I think Lyme testing wouldn't be a bad idea, from IGeneX, and possibly co-infections, but I really don't notice any physical symptoms except for stiff muscles / minorly rigid gait / facial expression difficulty / eye contact issues. My hand / wrist stiffness impacted my guitar playing ability. Lyme seems to come with all the achy joints, night sweats, hot / cold, muscle pain / weakness. I have just stable / chronic mild cognitive impairment and muscle stiffness. I mean maddeningly stable.
I've also considered looking at fecal analysis / gut biome testing to look for any red flags. Are there any recommendations on this?
It's odd though because I don't have any IBS symptoms, I do get foggy / tired after eating but never abnormal gas / diarrhea / constipation / bloating / abdominal discomfort / stomach pain.
I've collected a ton of reports on people improving on short heavy cycles of Flagyl (1,2), people going into remission on Rocephin (1,2), people curing neurological symptoms of Lyme with doxycycline (1).
I have doxy, minocycline, and flagyl on hand from an online pharmacy but I don't really want to engage in this without a full frontal assault for Lyme or knowing what I'm doing with Flagyl, aka without testing to prove it might do something. I've read too many stories of people half completing their antibiotic regimens, or even fully completing them, and ending up with terrible fungal issues and the like, completely wrecking their gut biome or strengthening the pathogen.
I've got Medicaid and a Dr very willing to work with me if I provide evidence for what I want to do.
My ability to formulate a game plan has gone down a bit in the last year and I'm just having a hard time assigning things a priority value so I know which way I should go first, I'm spinning my wheels quite a bit so I thought I would reach out a bit and see if anything here rings a bell with anyone and they could help point me in the direction of where I might want to start looking.
If I got the basic Lyme panel through IGeneX (Never covered by insurance) and perhaps the co-infections at Quest Diagnostics (probably covered) and then some sort of fecal analysis, would I have a pretty comprehensive coverage of what I would want to do antibiotic wise? Any advice on which co-infections to get tested for and a respected lab for fecal testing?
I've also tested positive for EBV which I'm trialing acyclovir for (high dose; details in notes) and negative for CMV. I plan to get tested for HHV-6 and a few others as well.
Thanks!