Kirstin
08-21-2002, 08:09 PM
I am at my wits end. I live in la la land in California, where according to the "experts" there is no Lyme. I have been to the best doctors at UCLA that says we don't have it here. I finally found a doctor who will treat me but is not a Lyme expert. He tried me on Minocin but I got such a bad Herx, at least that's what we thought it was, that I had to go off of it. Now I've been off the antibiotics for like a week and feel worse than before I started them. I can find NO ONE here, in one of the largest cities in the world, who is a specialist in this. The best I've found is a doctor in Santee, a Dr. Theresa Yang who does consultation work only. I need a doctor who only does Lyme, who knows what the heck they are doing and who will take new patients. At this point, I'm afraid I'm going to have to go back east to be treated by someone who knows what they're doing. I'm so terrified that I'm afraid to try the antibiotics again. I know people can over come this, but don't know what the best medicine is for me. I keep hearing about z-paks and this and that, but how do you know what is best for you? Trial and error? I can't keep going through such terrible Herxes with each trial and error. I got so sick that they thought they'd have to take me to the hospital. But even if they did, we fear that they wouldn't know how to treat me, since no one treats it over here. This is ruining my life. I am supposed to get married, move in with my fiance, etc., and I can't even do that. I have lost my job, my ability to take care of myself and all I can feel is frustration, anger and fear. Does anyone know who the "expert" doctors in Lyme are in the U.S.? At this point, I don't care where I have to travel too. I just want to see someone who is well known in the field of Lyme, who has been written up in medical journals for their success or is well known by name or something. Is there a pioneering doctor who is like the doctor of doctors when it comes to Lyme? Any help you could give would be most appreciated. Thank you.
Kirstin
Kirstin
Sponsor
ticker
08-21-2002, 10:28 PM
Hi Kirstin. Herxes can be very intense and scary but it means the meds are working and the bacteria are dying off. Some antibiotics work for some people, and others work for other people. Dr. Steven Harris in
Los Angeles/San Diego comes highly recommended.
Good luck!
[
Los Angeles/San Diego comes highly recommended.
Good luck!
[
Kirstin
08-21-2002, 10:37 PM
Ticker,
I heard of Dr. Harris, but just that he's starting out and therefore does not have a lot of experience with Lyme. Have you heard differently? How do I know if the reactions I am having are Herx related or medication related?
Kir
I heard of Dr. Harris, but just that he's starting out and therefore does not have a lot of experience with Lyme. Have you heard differently? How do I know if the reactions I am having are Herx related or medication related?
Kir
ticker
08-23-2002, 10:17 PM
Kirsten, there are two Dr. Harris'. I have heard that Dr. Steven Harris is knowledgeable.
Herxes can be different for eveyone, but many people experience them every four weeks or so. It is a good idea to document your symptoms. One way to do this is to rate each day from 1-10 in how you feel--where 1 is the worst and 10 is the best--and list the three worst symptoms of the day. That way over time you can see when patterns are emerging. Herxes are usually a worsening of symptoms or new symptoms. Allergic reactions are usually much different; however, you should always alert your doctor to any kind of reaction.
Herxes can be different for eveyone, but many people experience them every four weeks or so. It is a good idea to document your symptoms. One way to do this is to rate each day from 1-10 in how you feel--where 1 is the worst and 10 is the best--and list the three worst symptoms of the day. That way over time you can see when patterns are emerging. Herxes are usually a worsening of symptoms or new symptoms. Allergic reactions are usually much different; however, you should always alert your doctor to any kind of reaction.
ilonaross
08-28-2002, 09:03 AM
hi. sorry it's been so bad. because of the rules of this board, which i guess are geared to keeping advertisers, i can't post the name of the other board where i finally managed to track down doctors known as llmd's (lyme literate md's). if you do a google search (i hope posting the name of a search engine isn't against board regulations) you may reach a site where a lot of information and references to llmd's are provided.. i live on the east coast, not the west, so i can't offer names of doctors in california ... i was undiagnosed with lyme for a year and a half after being hospitalized for two months. now, i see an llmd on the east coast. you might try calling dr. brian fallon at columbia university in new york city (i hope this isn't against board regulations.....) he runs a lyme research project and he might know of an llmd in california. best of luck. ilona. fwiw, i'm finally getting better, after three years, and i'm on high doses of doxy and about to start plaquenil and cipro. good luck.
Kirstin
08-28-2002, 11:22 AM
Ilonia (sp.?)
I advise you to look carefully into Plaquenil. Before they knew what was wrong with me, they wanted to just shove me on it, because they figured I had something like Lupus. Plaquenil is a typical Lupus medication. Anyway, after researching it and getting this huge dissertation from the pharmacist about all the vision warnings I said, "no way!" I hope your doctor has told you that Plaquenil's main side effect is vision damage, impairment, and sometimes blindness. It is recommended that you have a vision test often. I find it odd that they would put you on that for Lyme. Also, isn't it a steroid? I'm not a doctor, so please don't take what I"m saying as gold, but I was told that steroids are deadly on the body, often causing permanent damage. The main one be Prednisone. I'm sure you doctor knows what he's doing, but after I saw the effects at a clinic I went to, to people who were on Prednisone (twisted fingers, limbs, etc.) I said, never would I take that stuff! But like I said, please just discuss with you doctor first. I've lost a lot respect and faith in the medical community. It took 24 doctors to even think of testing me for Lyme. And now that they know I have it, it has taken me an even longer search to find someone who knows what he or she is doing. BTW, how long have you been on Doxy now? Any side effects, bad herxes, etc.? My worst on the Minocin was terrible vertigo and headaches. How long did it take for you to start feeling better? And how did you end up in the hospital? Why do they want to add the Cipro and Plaquenil if the Doxy is working and what does of Doxy are you taking? Thanks, good luck and God bless you.
Kirstin
I advise you to look carefully into Plaquenil. Before they knew what was wrong with me, they wanted to just shove me on it, because they figured I had something like Lupus. Plaquenil is a typical Lupus medication. Anyway, after researching it and getting this huge dissertation from the pharmacist about all the vision warnings I said, "no way!" I hope your doctor has told you that Plaquenil's main side effect is vision damage, impairment, and sometimes blindness. It is recommended that you have a vision test often. I find it odd that they would put you on that for Lyme. Also, isn't it a steroid? I'm not a doctor, so please don't take what I"m saying as gold, but I was told that steroids are deadly on the body, often causing permanent damage. The main one be Prednisone. I'm sure you doctor knows what he's doing, but after I saw the effects at a clinic I went to, to people who were on Prednisone (twisted fingers, limbs, etc.) I said, never would I take that stuff! But like I said, please just discuss with you doctor first. I've lost a lot respect and faith in the medical community. It took 24 doctors to even think of testing me for Lyme. And now that they know I have it, it has taken me an even longer search to find someone who knows what he or she is doing. BTW, how long have you been on Doxy now? Any side effects, bad herxes, etc.? My worst on the Minocin was terrible vertigo and headaches. How long did it take for you to start feeling better? And how did you end up in the hospital? Why do they want to add the Cipro and Plaquenil if the Doxy is working and what does of Doxy are you taking? Thanks, good luck and God bless you.
Kirstin