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lyme disease
i have had lyme disease for 20 years now, and haven't been to a doctor in about 8 years( since i went through the treatments of antibiotics). I have been having flare ups in the past 2 months, that for the first time in a long time, have been scaring me alittle. in the past 2 months, i have a rash on my chest that started to spread to my back, my joints and muscles started hurting again, and my body is rejecting different foods that i could usually eat with no problem. i have made an appt. with a dr., but can't be seen until the end of the month. Has anyone else had these problems???
CORRECTION -- Nick Harris is the founder of Igenex labs; Steven Harris is the MD with an office in Malibu. Something I read long ago gave me the idea that they are father and son. That's all I know!
PS ... a while back I located some contact information for an LLMD in Malibu, name of N i c k H a r r is. Other than that, I don't know anything about him. He has a website.
LA doesn't seem to be overrun with LLMDs -- but it only takes one to be your doctor, so don't give up if you don't find one right away.
Wonko on this site has a good approach to finding an LLMD:
(1) google "how to find an LLMD" and add for example "los angeles" or "orange county" or "southern california" or "Long Beach" and see what you get -- there are often local support groups who have insight into who is available in their area. Many LLMDs don't want the heat from going beyond the CDC/IDSA guidelines in their treatment, so they don't advertise their names, and that's why you don't often see dr's names mentioned on websites like this one.
(2) check the ilads [dot] org website and see if you can find mention of an LLMD in your area.
and one more idea: there is a California Lyme Disease Association based in northern California. I've just bought some of their publications but otherwise don't know much about them. You could google them and see what you get from their website that might include the LA area.
There is a dr in Thousand Oaks/Ventura County, Trevor Marshall, who has developed a treatment program he calls the "Marshall Protocol" that is rather different that the treatment you would likely get from an ILADS-member MD -- I don't understand the reasoning behind the Marshall approach, and I've seen comments that his approach is different because (I am guessing) there are aspects of his patients' conditions that don't necessarily apply to all Lyme patients. Okay, that sentence conveyed nothing useful, but that's how little I understand about his approach.
There is no special qualification to BE an LLMD, and it can be a general practitioner, internist, neurologist, infectious disease dr, hematologist, immunologist, rheumatologist, you name it -- the important thing is the mindset and understanding that Lyme is not like an earache that will go away with a few antibiotics. I know you appreciate this already, but many drs don't.
We patients are, sadly, on the cutting edge of medicine. The drs who first got involved with Lyme were rheumatologists (due to joint trouble patients would have) and neurologists (due to other body symptoms), but these disciplines didn't look at the big picture and focused only on the parts: joints; and nerves. That doesn't mean rheumatologists and neurologists can't be LLMDs, but they often are mired in their training and point of view and so aren't likely to be very open-minded. The best bet is an MD who is a member of ILADS, because it shows they are open to seeing Lyme as it is, but ILADS membership is not absolutely necessary. LLMDs are also more likely to test you for common coinfections that the Lyme-carrying ticks that bit you may also have given you.
Let us know how it goes -- !
Wonko on this site has a good approach to finding an LLMD:
(1) google "how to find an LLMD" and add for example "los angeles" or "orange county" or "southern california" or "Long Beach" and see what you get -- there are often local support groups who have insight into who is available in their area. Many LLMDs don't want the heat from going beyond the CDC/IDSA guidelines in their treatment, so they don't advertise their names, and that's why you don't often see dr's names mentioned on websites like this one.
(2) check the ilads [dot] org website and see if you can find mention of an LLMD in your area.
and one more idea: there is a California Lyme Disease Association based in northern California. I've just bought some of their publications but otherwise don't know much about them. You could google them and see what you get from their website that might include the LA area.
There is a dr in Thousand Oaks/Ventura County, Trevor Marshall, who has developed a treatment program he calls the "Marshall Protocol" that is rather different that the treatment you would likely get from an ILADS-member MD -- I don't understand the reasoning behind the Marshall approach, and I've seen comments that his approach is different because (I am guessing) there are aspects of his patients' conditions that don't necessarily apply to all Lyme patients. Okay, that sentence conveyed nothing useful, but that's how little I understand about his approach.
There is no special qualification to BE an LLMD, and it can be a general practitioner, internist, neurologist, infectious disease dr, hematologist, immunologist, rheumatologist, you name it -- the important thing is the mindset and understanding that Lyme is not like an earache that will go away with a few antibiotics. I know you appreciate this already, but many drs don't.
We patients are, sadly, on the cutting edge of medicine. The drs who first got involved with Lyme were rheumatologists (due to joint trouble patients would have) and neurologists (due to other body symptoms), but these disciplines didn't look at the big picture and focused only on the parts: joints; and nerves. That doesn't mean rheumatologists and neurologists can't be LLMDs, but they often are mired in their training and point of view and so aren't likely to be very open-minded. The best bet is an MD who is a member of ILADS, because it shows they are open to seeing Lyme as it is, but ILADS membership is not absolutely necessary. LLMDs are also more likely to test you for common coinfections that the Lyme-carrying ticks that bit you may also have given you.
Let us know how it goes -- !
does anyone know of a llmd in los angeles? or close to there?
thank you guys so much. this is the best input of had about lyme in the 20 years i've had it.
thank you
thank you
thank you guys so much. this is the best input of had about lyme in the 20 years i've had it.
thank you
thank you
I don't follow any particular diet but I am a healthy eater in general. I eat a lot of salad, daily yogurt, no red meat. I do eat some bad things too of course like a little chocolate or ice cream but just in small amounts. I take a multivitamin, fish oil, CO-Q10. I don't know whether any of this helps or not but I guess it can't hurt.
I exercise on a regular basis and keep my weight normal. I still have chronic pain all over and tingling and twitching and things like that but all in all, I am better than I was 3 years ago.
In my case I feel this is a permanent part of life that I will just have to live with. For me, I do not think it is curable at this point.
I exercise on a regular basis and keep my weight normal. I still have chronic pain all over and tingling and twitching and things like that but all in all, I am better than I was 3 years ago.
In my case I feel this is a permanent part of life that I will just have to live with. For me, I do not think it is curable at this point.
Unfortunately, an infectious disease doctor is not the same as an LLMD. I have never gone to an infectious disease doc myself, but have consistently read negative Lyme patient experiences with them. They are very likely to follow the IDSA guidelines for Lyme treatment, which do not acknowledge that Lyme can persist for years or go dormant and flare as you have experienced.
You may want to look up the International Lyme and Associated Diseases (ILADS) website. They both acknowledge and promote treatment of chronic Lyme disease.
A popular LLMD is Dr. Burrascano, and he has written guidelines for Lyme treatment and patient lifestyle (diet/exercise). On the page linked below, scroll down to "ADVANCED TOPICS IN LYME DISEASE" and it will take you to a pdf of the guidelines:
http://www.medhelp.org/health_pages/Autoimmune/Lyme-Disease-Information--Physicians/show/564?cid=94
The guidelines do promote exercise, but caution not to exert yourself through aerobics until you have enough stamina.
You may want to look up the International Lyme and Associated Diseases (ILADS) website. They both acknowledge and promote treatment of chronic Lyme disease.
A popular LLMD is Dr. Burrascano, and he has written guidelines for Lyme treatment and patient lifestyle (diet/exercise). On the page linked below, scroll down to "ADVANCED TOPICS IN LYME DISEASE" and it will take you to a pdf of the guidelines:
http://www.medhelp.org/health_pages/Autoimmune/Lyme-Disease-Information--Physicians/show/564?cid=94
The guidelines do promote exercise, but caution not to exert yourself through aerobics until you have enough stamina.
do you take any 'probiotics'? - ie;acidophilus {good bacteria] - what type of food is your body rejecting?
I think a good diet as well as some vit./mineral supplements is always a good thing esp. for people with poss. immune deficiences.
what were your symptoms at the start of 'lyme' ?
I would be interested in hearing about your diagnosis/treatment - as I am sure other folks here would be.
It is always a good idea to excersise but maybe just some gentle stretching type stuff - untill the joint/muscle pain eases - 'deep breathing/relaxation' is something I find beneficial when I am having a 'flare' of symptoms - since it is always good to try to keep 'anxiety ' levels down.
I think a good diet as well as some vit./mineral supplements is always a good thing esp. for people with poss. immune deficiences.
what were your symptoms at the start of 'lyme' ?
I would be interested in hearing about your diagnosis/treatment - as I am sure other folks here would be.
It is always a good idea to excersise but maybe just some gentle stretching type stuff - untill the joint/muscle pain eases - 'deep breathing/relaxation' is something I find beneficial when I am having a 'flare' of symptoms - since it is always good to try to keep 'anxiety ' levels down.
thanks to both JackieCalifornia and patsy10.
patsy10 i completely agree that it goes dormant and then flares up during stressful times, and i also think during the times when my immune system is down.
Do you follow a special diet and exercise plan to help??
i feel that if i watched my diet it would help with my immune system, and an exercise plan would help with my bones and muscles then i might feel better...i think.
any advice??
patsy10 i completely agree that it goes dormant and then flares up during stressful times, and i also think during the times when my immune system is down.
Do you follow a special diet and exercise plan to help??
i feel that if i watched my diet it would help with my immune system, and an exercise plan would help with my bones and muscles then i might feel better...i think.
any advice??
Welcome to MedHelp. I've had symptoms for 17 years since I had the bullseye rash. I had a 7 year episode of remission one time. I personally feel it goes dormant then comes out again during periods of stress. I find I improve with treatment each time it flares. It always seems to come back again.
thanks for responding. I just got referred to an infectious disease dr. I don't know if it's the same kind of dr. you mentioned...i hope it is.
It is frustrating when you have to explain to a dr. what lyme disease is. About 10 years ago i sat in quite a few dr.'s offices in Los Angeles and had to explain to them what my disease was. If they didn't know what to do, they would never say "i don't know" instead they would tell me i needed a therapist.
sorry to vent, but thank you
It is frustrating when you have to explain to a dr. what lyme disease is. About 10 years ago i sat in quite a few dr.'s offices in Los Angeles and had to explain to them what my disease was. If they didn't know what to do, they would never say "i don't know" instead they would tell me i needed a therapist.
sorry to vent, but thank you
Sorry to hear about your situation.
Others can chime in here, but I haven't had Lyme as long as you have, and everybody's symptoms are different, it seems.
Is the dr you are seeing one who specializes in Lyme? (often called an LLMD around here: a Lyme Literate MD, who 'gets' what Lyme is about)
Take care -- let us know how you're doing.
Others can chime in here, but I haven't had Lyme as long as you have, and everybody's symptoms are different, it seems.
Is the dr you are seeing one who specializes in Lyme? (often called an LLMD around here: a Lyme Literate MD, who 'gets' what Lyme is about)
Take care -- let us know how you're doing.
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