posted
My husband has been sick for a year with what they have been saying is an autoimmune disease (dermatomyositis with pulmonary fibrosis). WB just came back positive and our antibiotic protocol doctor has referred us to Dr. H in CA. It's going to be quite a bit of travelling from San Diego to Northern California. Does anyone have experience with him? From calling his phone number it seems like you don't actually get to talk with a live person. There's just a recording of available dates and you're supposed to leave a message for which one might work. I guess I need some reassurance that there are actually people there. People that call back, etc.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
quote:Originally posted by Parisa:
My husband has been sick for a year with what they have been saying is an autoimmune disease (dermatomyositis with pulmonary fibrosis).
WB just came back positive and our antibiotic protocol doctor has referred us to Dr. H in CA. It's going to be quite a bit of travelling from San Diego to Northern California. Does anyone have experience with him ?
From calling his phone number it seems like you don't actually get to talk with a live person. There's just a recording of available dates and you're supposed to leave a message for which one might work. I guess I need some reassurance that there are actually people there. People that call back, etc.
Hopefully, some Californians will stop by during normal hours tomorrow to give you some advise ok!
I'll send you a private message, PM, with 19 pages of newbie links/advise. Welcome to our lyme group!
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Everything I have heard about him as a clinician has been extremely positive. People have commented that making contact with his can be a bit of a process but if I didn't already have a doctor who is working out well, he's the one I would want to see. My doctor is Lyme friendly and is only about fifty more miles up the road, if that doesn't work out. Good luck.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Thanks for getting back to me. Not being able to deal with a live person threw me for a loop but if he's as good as you're saying I'll put up with that.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Dr.H's office just called and I was able to speak with a friendly live person. So, there system does work.
Posts: 984 | From San Diego | Registered: Nov 2006
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LymeDad
Posts: 681 | From California | Registered: Oct 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Just sent a PM.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I am also interested in information on Dr. H. My sister is a 45-year old triathlete who lives in Sacramento and went through extensive testing over the last three months with no resulting diagnosis. She has all the symptons of Chronic Lyme Disease and just received negative results for ALS and MS at UCSF. The neurologists are baffled but no one is raising Chronic Lyme Disease. Now I'm learning more about why, while each day she is getting worse and losing more muscle weight.
I'm new to message boards so forgive me if I'm unaware about protocol.
Posts: 1 | From Sacramento, Ca | Registered: Nov 2006
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bettyg
Unregistered
posted
[QUOTE]Originally posted by rdddmwd:
I am also interested in information on Dr. H.
My sister is a 45-year old triathlete who lives in Sacramento and went through extensive testing over the last three months with no resulting diagnosis.
She has all the symptons of Chronic Lyme Disease and just received negative results for ALS and MS at UCSF.
The neurologists are baffled but no one is raising Chronic Lyme Disease .
Now I'm learning more about why, while each day she is getting worse and losing more muscle weight.
I'm new to message boards so forgive me if I'm unaware about protocol.
Welcome brother! I'll send you a private message, PM, with my 20 pages newbie links/advise to help you/your sister.
Californians will stop by during NORMAL hours tomorrow to give you more LLMD guidance!
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posted
Sorry that I'm a bit late gettng over here, but I have been seeing Dr. H for a bit more than a year. He, himself is fantastic. Getting through to his office staff, however, can be daunting. Perserverance is the key! He has had staff change in the last few months and they do seem to be doing a bit better. I've chosen to work with the staff, as possible, because I think Dr. H is worth the hassle. The problems are trying to be resolved.
One hint: His staff is NOT full time. Try to work with their hours, and remember that Dr. H spends a fair amount on the road having clinics outside of the area. He's a real great guy! Posts: 7 | From San Martin, Ca., USA | Registered: Jul 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I, too see Dr. H. I highly recommend him. I think that is great you had a doctor who also recommended him.
RE: UCSF MEdical Center. I, too, went to UCSF Medical CEnter for answers.
They are not lyme literate. Lyme Disease was never even considered.
I was told to take some antidepressants after I told the doc that I had tried antidepressants and they depressed me.
I saw 3 different docs at UCSF. Two were Ok. One was not. All were neuro's.
They were also very poor at follow through. I got to the point were I no longer called to remind them of what they told me needed to be done next and to get that appointment made.
They called me months later to ask if it had been done. When I told them no, they finally followed through on it.
I had called, faxed and left messages.
I also had all the testing done previously that they wanted to do. They said that it was usually done wrong so they wanted to do their own testing.
They got the same results as the other place. IT was a waste of time, energy and money I am sorry to say.
When I went to see Dr. H and learned which bands were indicative of lyme disease vs MS, I felt I no longer needed to continue with UCSF.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Hello, I appear to be having a lymes relapse and am very interested in this Dr H...I will be visiting Sacramento next week (week of April 23) and would appreciate any more info you can give on this Dr. Thank You!
Posts: 212 | From Eastern CA | Registered: Apr 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
California patients should check out the yahoo group CaliforniaLyme. It's a good group.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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