picante
Senior Member
- Messages
- 829
- Location
- Helena, MT USA
I've had almost daily neck spasms since mid-March. Neck spasms & migraines have been the hallmark of my post-exertional reactions, ever since my onset with mono 24 years ago.
Last year I found could alleviate them somewhat by using list A for right-side spasms and list B for left side spasms. Sometimes they went from side-to-side with this approach, but it was better than nothing.
Increasingly since mid-March, this was no longer working, nor was anything else I tried (including chiropractic). During this time, I became aware that my devastating bout with EBV back in 1992 was also meningitis, something the Urgent Care docs and the dermatologist never figured out.
So my ND ordered more antibody tests, and I started to suspect that my neck spasms were from inflammatory cytokines due to lingering meningeal or CNS infection. The ND eventually put me on Byron White's A-V formula first, with plans to switch to the EBV-HV6 formula eventually.
I started A-V on April 26, and as I raised the dose, I noticed it was raising my pulse and blood pressure, well beyond anything I was used to seeing. Gradually the neck spasms got worse, almost constant. Backing down from 12 drops to 10, then 8, then 7 gave me temporary relief, but within a day or two, my resting heart rate would be up to mid-80s again, and I was too weak to do anything but lie down and read. My temperature got very erratic, thyroid dosing became impossible (more so than usual), polyuria & dehydration got worse.
Finally Tuesday I came down with a circulating virus, for the first time in 24 years. My husband brought it home from work last week. Fever, chills, and massive upper respiratory congestion. So I stopped the A-V and my pulse/BP went back to their normal, low levels. And the neck spasms became less severe. And the fever was gone Wednesday.
I restarted the antiviral yesterday. It was too soon (or perhaps too much of it). Everything went haywire again. A visit to the chiropractor got me a huuuuge adjustment, but no pain relief. Until evening, when I tried 1/2 cap of Vinpocetine. 15 minutes later, PAIN RELIEF. Since it makes my blood pressure dive, I waited for it to bounce back, and took the other 1/2 cap an hour later. More PAIN RELIEF.
Now the questions:
1) The Vinpocetine is known to reduce specific cytokines, which I have not had measured. Will they be able to find these with blood tests if the infection is in my CNS/meninges?
2) What sort of specialist should I see? I don't think we have a virologist or infectious disease specialist here, and there is only one neurologist.
3) Is there any benefit in restarting the ($85 bottle of) A-V at a lower dose? I mean, considering that I have to take Vinpocetine, which lowers some of the cytokines the A-V is raising?
4) Are there other cytokine-lowering supplements I should consider? I'm only taking 10 mg at a time of Vinpocetine, because when I took a whole cap back in April, my BP went to 88/58.
5) Is it possible that leptin fluctuations might be responsible for my polyuria, hypoglycemia, and inconsistent response to thyroid hormones? The clinic said hemogobin A1C and anti-diuretic hormone were normal, so they didn't want to bother with testing fasting insulin. I kind of think that ADH is low: it's 0.8 pg/mL [0-4.7], but it's "normal" to them because it's not below zero.
Last year I found could alleviate them somewhat by using list A for right-side spasms and list B for left side spasms. Sometimes they went from side-to-side with this approach, but it was better than nothing.
Increasingly since mid-March, this was no longer working, nor was anything else I tried (including chiropractic). During this time, I became aware that my devastating bout with EBV back in 1992 was also meningitis, something the Urgent Care docs and the dermatologist never figured out.
So my ND ordered more antibody tests, and I started to suspect that my neck spasms were from inflammatory cytokines due to lingering meningeal or CNS infection. The ND eventually put me on Byron White's A-V formula first, with plans to switch to the EBV-HV6 formula eventually.
I started A-V on April 26, and as I raised the dose, I noticed it was raising my pulse and blood pressure, well beyond anything I was used to seeing. Gradually the neck spasms got worse, almost constant. Backing down from 12 drops to 10, then 8, then 7 gave me temporary relief, but within a day or two, my resting heart rate would be up to mid-80s again, and I was too weak to do anything but lie down and read. My temperature got very erratic, thyroid dosing became impossible (more so than usual), polyuria & dehydration got worse.
Finally Tuesday I came down with a circulating virus, for the first time in 24 years. My husband brought it home from work last week. Fever, chills, and massive upper respiratory congestion. So I stopped the A-V and my pulse/BP went back to their normal, low levels. And the neck spasms became less severe. And the fever was gone Wednesday.
I restarted the antiviral yesterday. It was too soon (or perhaps too much of it). Everything went haywire again. A visit to the chiropractor got me a huuuuge adjustment, but no pain relief. Until evening, when I tried 1/2 cap of Vinpocetine. 15 minutes later, PAIN RELIEF. Since it makes my blood pressure dive, I waited for it to bounce back, and took the other 1/2 cap an hour later. More PAIN RELIEF.
Now the questions:
1) The Vinpocetine is known to reduce specific cytokines, which I have not had measured. Will they be able to find these with blood tests if the infection is in my CNS/meninges?
2) What sort of specialist should I see? I don't think we have a virologist or infectious disease specialist here, and there is only one neurologist.
3) Is there any benefit in restarting the ($85 bottle of) A-V at a lower dose? I mean, considering that I have to take Vinpocetine, which lowers some of the cytokines the A-V is raising?
4) Are there other cytokine-lowering supplements I should consider? I'm only taking 10 mg at a time of Vinpocetine, because when I took a whole cap back in April, my BP went to 88/58.
5) Is it possible that leptin fluctuations might be responsible for my polyuria, hypoglycemia, and inconsistent response to thyroid hormones? The clinic said hemogobin A1C and anti-diuretic hormone were normal, so they didn't want to bother with testing fasting insulin. I kind of think that ADH is low: it's 0.8 pg/mL [0-4.7], but it's "normal" to them because it's not below zero.
)