A
anne
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Ross, please don't answer if you don't want, but I was curious what Dr. P thinks of the Lyme.
The Hammer - Vistide and Dr. Peterson
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jenbooks
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Nobody has addressed viruses in ticks.
mojoey
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Peterson and Lyme
As of my last visit with him, he unequivocally doesn't believe Lyme occurs in CA. I didn't press the issue further with him.
As of my last visit with him, he unequivocally doesn't believe Lyme occurs in CA. I didn't press the issue further with him.
jenbooks
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You gotta be kidding.
mojoey
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Jen
I wish I were. Hopefully he's changed his mind on that. He doesn't test with igenenex, only labcorp i think
I wish I were. Hopefully he's changed his mind on that. He doesn't test with igenenex, only labcorp i think
I think Peterson steers clear of the Lyme controversy. I'm not saying he's right, I just think that he doesn't want to get involved. I have brought it up with him many times. He just kind of defers...
He may well have "CFS" patients who really have Lyme and not know it, just as many "LLMD"s might have "Lyme" patients with "CFS" and not know it. Peterson clearly has been looking hard for a virus causes "CFS"... thats not a secret. He may or may not end up being right for some or all of his patients.
Unfotunately there is not one "guru" of all docs that knows everything about everything like "House". They all have their limitations. If you truly think you have Lyme but don't test CDC positive, you really have no choice but to go to a "Lyme" doc and do an empiric trial of antiboics. But don't expect them to look any further than Lyme if it doesn't work out.
There really aren't any truly objective people in this world. We all have our biases directed by our experiences and beleif systems. Doctors are no different... :-/
He may well have "CFS" patients who really have Lyme and not know it, just as many "LLMD"s might have "Lyme" patients with "CFS" and not know it. Peterson clearly has been looking hard for a virus causes "CFS"... thats not a secret. He may or may not end up being right for some or all of his patients.
Unfotunately there is not one "guru" of all docs that knows everything about everything like "House". They all have their limitations. If you truly think you have Lyme but don't test CDC positive, you really have no choice but to go to a "Lyme" doc and do an empiric trial of antiboics. But don't expect them to look any further than Lyme if it doesn't work out.
There really aren't any truly objective people in this world. We all have our biases directed by our experiences and beleif systems. Doctors are no different... :-/
Kati
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What do you mean by testing CDC positive please?
mojoey
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Hey Ross
I don't see Peterson nearly as often as you do.. perhaps you could ask him if the opportunity presents itself to see if I misread his stance? (although I clearly remember him saying "I don't see how lyme could be endemic to CA") or maybe he's changed his mind since then?
I don't see Peterson nearly as often as you do.. perhaps you could ask him if the opportunity presents itself to see if I misread his stance? (although I clearly remember him saying "I don't see how lyme could be endemic to CA") or maybe he's changed his mind since then?
jenbooks
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Lyme CA
There was a wonderful gal, Sarah, whose moniker was CaliforniaLyme on Lymenet for quite a while. She doesn't post there anymore. She and her daughter got horrible lyme/babesia when they moved into a house on a property where, it turned out, a teenage girl had also died of meningitis (if I recall correctly--and who knows if that was lyme). If the husband got lyme it was not as bad a case. Sarah almost died. A huge amount of IV antibiotics (at least nine months of rocephin) and orals and antibabesials slowly brought her back to life. Last I heard she was still on oral amoxicillin at fairly high doses or she'd relapse. The daughter, a little girl, had gone through a horrible time but on all the drugs recovered.
She helped run a support group in northern california. I remember her mentioning a popular park that had a warning about ticks. In addition, there were many very sick lymies in that group--some with ALS etc--and many responded well to various treatments. Only some of the ALS'ers responded to treatment, though.
So to think its not endemic in California is strange. At least, northern California. It's clearly endemic and that's where they isolated wa1 the more resistant strain of babesia.
Maybe as the other poster says he just doesn't want to deflect from a viral etiology--he can't focus in more than one direction. He really should, though, with all that testing he does--even if it's to rule out those with tickborne illness and send them to an LLMD.
There was a wonderful gal, Sarah, whose moniker was CaliforniaLyme on Lymenet for quite a while. She doesn't post there anymore. She and her daughter got horrible lyme/babesia when they moved into a house on a property where, it turned out, a teenage girl had also died of meningitis (if I recall correctly--and who knows if that was lyme). If the husband got lyme it was not as bad a case. Sarah almost died. A huge amount of IV antibiotics (at least nine months of rocephin) and orals and antibabesials slowly brought her back to life. Last I heard she was still on oral amoxicillin at fairly high doses or she'd relapse. The daughter, a little girl, had gone through a horrible time but on all the drugs recovered.
She helped run a support group in northern california. I remember her mentioning a popular park that had a warning about ticks. In addition, there were many very sick lymies in that group--some with ALS etc--and many responded well to various treatments. Only some of the ALS'ers responded to treatment, though.
So to think its not endemic in California is strange. At least, northern California. It's clearly endemic and that's where they isolated wa1 the more resistant strain of babesia.
Maybe as the other poster says he just doesn't want to deflect from a viral etiology--he can't focus in more than one direction. He really should, though, with all that testing he does--even if it's to rule out those with tickborne illness and send them to an LLMD.
Vistide progress
Oh, I should mention that regular sleepiness and sleep patterns returned about half way through my first three-month course.
I was never particularly sleepy when I was in the depths of this illness. I was debilitated with tiredness, but I was not sleepy--there's a difference. My sleep would be light and disjointed. I would wake up tired.
About a month and a half into the vistide nighttime would come along and I thought, hey, I'm actually sleepy.
Now I get sleepy late at night like a normal person and I sleep soundly. I always slept soundly before I got ill and I'm back to normal. It's fun to be ready for bed and lovely to sleep soundly.
Oh, I should mention that regular sleepiness and sleep patterns returned about half way through my first three-month course.
I was never particularly sleepy when I was in the depths of this illness. I was debilitated with tiredness, but I was not sleepy--there's a difference. My sleep would be light and disjointed. I would wake up tired.
About a month and a half into the vistide nighttime would come along and I thought, hey, I'm actually sleepy.
Now I get sleepy late at night like a normal person and I sleep soundly. I always slept soundly before I got ill and I'm back to normal. It's fun to be ready for bed and lovely to sleep soundly.
A
anne
Guest
Ross, good luck with your trip. I've never had to do it in a snowstorm, and I don't envy you. We'll look forward to hearing what Dr P says!
Thought I'd pop in to report that at 6 months I'm at 90% and back to work, back to being capable parent, back to taking care of the house. If I don't improve another inch on vistide, I'll count myself beyond miraculously fortunate.
By the way, another marker of my return to good health: I have a full blown cold!
Why is it that we don't get big, blow out colds? We have a huge immune response (that then lays us out)?
By the way, another marker of my return to good health: I have a full blown cold!
Why is it that we don't get big, blow out colds? We have a huge immune response (that then lays us out)?
R
Robin
Guest
Wow, congratulations! That's amazing.
I'm so happy for you.Now, do you have to stay on this? It looks so toxic! Or is it a six month thing then you're done?
cfs since 1998
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Vistide goes off patent later this year, I think in June. Administration costs and tests might still get expensive, but even if insurance does not pay for the drug maybe a generic will be cheap enough and insurance will pay for the office and lab fees?
hvs, how would you rate your condition immediately before you did Vistide? You went from ___% to 90%?
hvs, how would you rate your condition immediately before you did Vistide? You went from ___% to 90%?
Wow, congratulations! That's amazing.
Now, do you have to stay on this? It looks so toxic! Or is it a six month thing then you're done?
Well, as Ross will tell you, you can be on it for a year...maybe more.
Yep, vistide is a potentially dangerous drug, which is why one's blood gets drawn 3 times a week to monitor for adverse effects. ...But I'd be suprised if any cancer/chemo drugs are as gentle as vistide.
I have good insurance through my good employer. It is covered because Doc P is good at arguing for its necessity.
Thanks for the good wishes.
Hmm, let's see. One way to measure (one that I wish more patients had access to because it obliterates the arguments of the Wessley types) is my VO2 max, which suggested I was the equivalent of someone with heart disease and qualified me for federal disability. I was on medical leave from my job. Stairs were tough. I spent 90% of the day lying down. Could do very little around the house. I was heading towards serious serious incapacity, but because I clearly got this from my spouse we got to work at it with Dr. P very early on in my illness and avoided the horrible bodily injury so many on these fora experience.
Hmm, so I went from not able to work or be upright more than a couple hours a day doing very little to able to do what needs to be done around the house, with my child, and at work.
Terrific!
Hi hvs,
This is all really encouraging!
Was your VO2 max measured just once? Do you remember what it was?
Or did you do the two-day exercise test and have it measured twice? If so, was it lower the second day? Did doing the test cause a setback?