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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by bleauberry on April 7, 2009, at 17:48:49
This is a tough one. I doubt even a Neurologist could figure this out. It would probably take accumulated knowledge of psychiatry, neurology, physiology, and immunology, to make sense of it. I'm not expecting any breakthroughs here, but ya know, it has happened before, so I'm not ruling anything out. My friends, tell me what you think.
The major hurdle I face with any treatment that has me feeling better mentally is....debilitating calf muscle pain to where I can barely walk.
What does it feel like? Imagine someone beating the backside of your lower legs with a baseball bat hard enough to almost break bones, for a good while, and then imagine what those legs would feel like when you stand up out of bed the next day.
What has worked for my mood improvement?
DMSA (lead/mercury chelator): Reliably, day 2 through 4 at just 12.5mg/4 hours is near total remission. Then the calf tightness, hardness, pain, kicks in.Parnate: Believe it or not, a mere 2.5mg daily, or just 5mg once every 3 days, is about a 60% improvement quite pronounced by day 3. Then the calf troubles hit hard, real hard.
SAMe: At 200mg to 400mg per day, rapid improvement, with rapidly progressing calf disability.
B Vitamin Complex: Same thing as SAMe.
What seems to be beneficial for the legs, but not for mood?
St Johns Wort
Wellbutrin
CymbaltaBut, when those are stopped due to severely deteriorated psychiatric condition, the leg pains kick in to almost incapacitating, and slowly subside over about a week.
These pains do not exist at baseline.
With the exception of the B vitamins, what do all the others have in common?
Sulfur.
When this first happened, I though maybe it was a form of neuroleptic malignant syndrome, even though no neuroleptic in the mix. But the big question, why just the calves?
Lots of meds have "muscle rigidity" listed as a side effect. But, why just the calf muscles and nothing else?
I have wondered maybe if it was too much epinephrine or norepinephrine constricting muscles...but if so, again, why just the calf muscles?
Very perplexing. Ya know, I could be well on my way to a new life with Parnate. But it aint much good if one can't walk?
What is this? Does my suspicion to sulfur ring a bell with anyone? Is this a dopamine thing?
Of course, with Lyme disease, who knows what neurological stuff is going on. Quite unique from person to person.
And with confirmed hypoadrenalism, maybe low cortisol is somehow behind all the bizarre stuff.
Your thoughts?
Posted by garnet71 on April 7, 2009, at 18:10:39
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
I don't know any scientific answer to your question, but your question is interesting.
Maybe its just due to the nature of the muscle itself that makes it more susceptible to pain. Maybe the calf muscle is short and dense. Calves really don't have fat in them either. Or, circulatory problems..that can cause pain in the lower extremities.
Healthy people get cramps in calves. My grandmother used to take potassium for that. At night I'd guess they contract too much. Those types of muscles get less flexible when you get older too. Then there's sleep paralysis that causes your muscles to make involuntary movements that may be ackward, I think (just guessing).
Like plantar fascitis - that muscle under your foot - it contracts at night and doesn't stretch. The remedy for that in part is frequent stretching to make it more flexible.
I bet a physical therapist would know the answer before a medical doctor (except maybe an orthopedic Dr.)-that's who you should ask. Just call one up as if you were inquiring about possible treatment for the condition. They are super nice w/talking on the phone and taking the time to discuss things with you.
Posted by Maria3667 on April 7, 2009, at 18:18:55
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
Hi BB,
Yes it's a though one!
Especially since you make it so complex thinking of all these complex possible hypo this/that disorders...
No pun intended, just wondering if you're not making things more complicated than they really are?
Have you ever considered you might just be calcium deficient? I used to get really bad pains in my calfs too - turned out low calcium was the culprit. If you are deficient and you take calcium tab's, you'll find the pain will subside within a few days (always check with a Dr ofcourse).
Maybe that's an easier route than going through psychiatry, neurology, physiology, and immunology? Just a hunch.
I wish you well.
Maria
> This is a tough one. I doubt even a Neurologist could figure this out. It would probably take accumulated knowledge of psychiatry, neurology, physiology, and immunology, to make sense of it. I'm not expecting any breakthroughs here, but ya know, it has happened before, so I'm not ruling anything out. My friends, tell me what you think.
>
> The major hurdle I face with any treatment that has me feeling better mentally is....debilitating calf muscle pain to where I can barely walk.
>
> What does it feel like? Imagine someone beating the backside of your lower legs with a baseball bat hard enough to almost break bones, for a good while, and then imagine what those legs would feel like when you stand up out of bed the next day.
>
> What has worked for my mood improvement?
> DMSA (lead/mercury chelator): Reliably, day 2 through 4 at just 12.5mg/4 hours is near total remission. Then the calf tightness, hardness, pain, kicks in.
>
> Parnate: Believe it or not, a mere 2.5mg daily, or just 5mg once every 3 days, is about a 60% improvement quite pronounced by day 3. Then the calf troubles hit hard, real hard.
>
> SAMe: At 200mg to 400mg per day, rapid improvement, with rapidly progressing calf disability.
>
> B Vitamin Complex: Same thing as SAMe.
>
> What seems to be beneficial for the legs, but not for mood?
>
> St Johns Wort
> Wellbutrin
> Cymbalta
>
> But, when those are stopped due to severely deteriorated psychiatric condition, the leg pains kick in to almost incapacitating, and slowly subside over about a week.
>
> These pains do not exist at baseline.
>
> With the exception of the B vitamins, what do all the others have in common?
>
> Sulfur.
>
> When this first happened, I though maybe it was a form of neuroleptic malignant syndrome, even though no neuroleptic in the mix. But the big question, why just the calves?
>
> Lots of meds have "muscle rigidity" listed as a side effect. But, why just the calf muscles and nothing else?
>
> I have wondered maybe if it was too much epinephrine or norepinephrine constricting muscles...but if so, again, why just the calf muscles?
>
> Very perplexing. Ya know, I could be well on my way to a new life with Parnate. But it aint much good if one can't walk?
>
> What is this? Does my suspicion to sulfur ring a bell with anyone? Is this a dopamine thing?
>
> Of course, with Lyme disease, who knows what neurological stuff is going on. Quite unique from person to person.
>
> And with confirmed hypoadrenalism, maybe low cortisol is somehow behind all the bizarre stuff.
>
> Your thoughts?
Posted by Phillipa on April 7, 2009, at 21:17:45
In reply to Re: Larry Hoover, SLS, Anyone and All, Your Thoughts? » bleauberry, posted by Maria3667 on April 7, 2009, at 18:18:55
BB don't think it's complicated at all I like the others suggestions. I've had tight calf muscles myself from overexcercise while I'm dying Of a dreaded disease. But for me I use a heating pad and take calcium magnesium and it's gone. I don't think it's related to the other maladies you have but I'm not a doctor. I'd call a regular internist or gp and ask and maybe let them look at it. Also maybe a chiropractor? Just some thoughts. Love Phillipa
Posted by Sigismund on April 8, 2009, at 1:20:33
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
And then there was that thing in your wrist?
Some physical pain, IIRC.
You may have thought it was to do with NE, and it may have happened on Ixel?
Posted by SLS on April 8, 2009, at 1:42:17
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
Low potassium?
- Scott
Posted by desolationrower on April 8, 2009, at 8:52:26
In reply to Re: Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by SLS on April 8, 2009, at 1:42:17
i think calves have more (i forget the term, the tough stuff that makes up tendons) in it, to store energy when it has tension on it which ends up putting some 'spring' in your step. maybe thats why it is the place you are noticing it.
i agree with privious suggestions as a good place to start (though ca/k/mg all increased together might be a good idea). perhaps the parnat effect of blood pressure is causing the noticable effect after taking it.
-d/r
Posted by Larry Hoover on April 8, 2009, at 9:06:25
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
Just a quickie response. I pretty much skimmed your post, as I have to go out. If calf pain is your symptom, I'd be concerned that you have a peripheral circulation problem that is somehow exacerbated by your interventions. Many amines have pressor effects, mediated by contraction of blood vessels. If the result of your interventions is an increase in circulating pressor amines, and you're developing peripheral circulatory problems, you may just be exposing the tip of a medical iceberg. Calf pain is often the first symptom, from reduced oxygenation of those large peripheral muscles.
Just thinking quickly. Gotta go.
Lar
Posted by raisinb on April 8, 2009, at 9:42:44
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
Just a thought, but "muscle rigidity" can affect one group of muscles and not others. When I first went on Wellbutrin, my quads were impossible to unclench and hurt all the time, but other muscles were fine.
No idea if that's what's going on with you or not.
Posted by bleauberry on April 8, 2009, at 17:17:08
In reply to Larry Hoover, SLS, Anyone and All, Your Thoughts?, posted by bleauberry on April 7, 2009, at 17:48:49
I appreciate everyone's thoughts. Thank you so much for taking the time. I'm still on the hunt, but it is nice to know people are thinking and helping. This board is all about support, and I sure feel a lot of it when I need it. Thank you.
Potassium, magnesium, etc...my doc was very thorough in testing and said my levels were all "excellent". Not just good, but excellent. I have also tried these supplements. Strange, but magnesium in particular actually made my leg pains/tightness even worse, not to mention the dastardly elevation of doom and gloom depression from the magnesium. Very bad supplement for me. Potassium doesn't seem to do anything one way or other.
I was surprised my flare-up of previously healed wrist tendonitis was remembered here, when it was aggravated by Milnacipran and its supposed norepinephrine constricting. I am impressed. A few of you don't miss any details. I was quite surprised. This train of thought still makes sense for the legs, except I wonder why Cymbalta was good for calves. It has enough NE that it should have had a hint of badness, but it didn't. Suicide ward stuff it is, but my calves liked it.
Circulatory problems. Well, that makes sense. Again though, why just calves. I would like to hear more on this topic, and how different meds would affect the condition. And more importantly, how to treat it or reverse it.
I am still suspect and puzzled though, simply because these calf problems are so absent at baseline, yet come out of the blue so severely so rapidly when provoked by a certain substance.
At another forum someone mentioned ammonia as being a common problem with some diseases such as Lyme, and that it can do exactly what I experience, and that certain meds provoke excess ammonia, with Parnate being one of them. This is over my head and probably pioneering science.
Posted by Sigismund on April 8, 2009, at 20:06:46
In reply to Re: Response to All..., posted by bleauberry on April 8, 2009, at 17:17:08
>At another forum someone mentioned ammonia as being a common problem with some diseases such as Lyme, and that it can do exactly what I experience, and that certain meds provoke excess ammonia, with Parnate being one of them. This is over my head and probably pioneering science.
My nutritional doctor wondered whether my mental problems (so to speak) might be related to too much ammonia from something or other.
He prescribed alpha-keoglutarate.
Not ornithone or anything else alpha ketoglutarate, but just straight alpha ketoglutarate.I took it for some months and unsurprisingly my experience was inconclusive.
This is the end of the thread.
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Dr. Bob is Robert Hsiung, MD,
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