Aa
Recently diagnosed
I was diagnosed with Lyme in Sept. I was feeling no joint pain at that time, just general achiness, headaches, fever,fatigue etc. Took my 2 week course of doxycycline. However in the last few weeks my knees are becoming stiff and achy. My question is what is, what is the best type of Dr to see and what treatment and medication are recommended? Thanks for any input!
About finding a MN Lyme doc -- I just google/searched
--- minnesota lyme ---
and got some good leads. One of the groups has changed its name, it seems, so it's a little confusing, but there appear to be at least two Lyme support groups in MN.
That could be a very good place to get names of local Lyme docs, from people who have actually been treated by them.
The ILADS referrals can be just fine too, but there is no test or degree to be a 'Lyme literate MD' [LLMD] -- it's just patient slang for a doc who 'gets' the concept that Lyme does not equal the sniffles, understands co-infections, and knows a litte doxy likely won't kick the infection.
The advantage of a patient group is that there are personal recommendations of patients treated by the doc. A referral from ILADS is a good start, but to my knowledge there is no test to join ILADS, so the docs are a mixed bag. Progressive thinkers interested in Lyme maybe -- but the odds are they are not all brilliant docs who are patient-friendly. Lyme is a fast-developing field of medicine, and some of the docs are little far out there in some ways. Lyme is cutting-edge medicine, and in a developing field like Lyme, patient groups are often very good, upfront, been-there people who have been treated by the docs and can speak from personal experience.
--- minnesota lyme ---
and got some good leads. One of the groups has changed its name, it seems, so it's a little confusing, but there appear to be at least two Lyme support groups in MN.
That could be a very good place to get names of local Lyme docs, from people who have actually been treated by them.
The ILADS referrals can be just fine too, but there is no test or degree to be a 'Lyme literate MD' [LLMD] -- it's just patient slang for a doc who 'gets' the concept that Lyme does not equal the sniffles, understands co-infections, and knows a litte doxy likely won't kick the infection.
The advantage of a patient group is that there are personal recommendations of patients treated by the doc. A referral from ILADS is a good start, but to my knowledge there is no test to join ILADS, so the docs are a mixed bag. Progressive thinkers interested in Lyme maybe -- but the odds are they are not all brilliant docs who are patient-friendly. Lyme is a fast-developing field of medicine, and some of the docs are little far out there in some ways. Lyme is cutting-edge medicine, and in a developing field like Lyme, patient groups are often very good, upfront, been-there people who have been treated by the docs and can speak from personal experience.
If you go to the ILADS.org site--- up in the right hand corner are the words (not large) "contact us'.
They will send 3 names of ILADS trained doctors that are closest to you. You obviously have to say you want a referral (there's a button to click) and give them your city.
Here is something to read, while waiting for those referrals:
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
That's a worst case scenario but it has happened that an unwary Lyme patient has been shuffled off to herbs for treatment. (If you prefer this type of treatment, read no further)
If you wish, and after you get those 3 names, I'll be glad to vet them for you. You would have to P.M. me because giving the names of doctors are frowned upon here for the public. :(
Of course the ultimate choice is yours.
They will send 3 names of ILADS trained doctors that are closest to you. You obviously have to say you want a referral (there's a button to click) and give them your city.
Here is something to read, while waiting for those referrals:
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
That's a worst case scenario but it has happened that an unwary Lyme patient has been shuffled off to herbs for treatment. (If you prefer this type of treatment, read no further)
If you wish, and after you get those 3 names, I'll be glad to vet them for you. You would have to P.M. me because giving the names of doctors are frowned upon here for the public. :(
Of course the ultimate choice is yours.
thank you all for the advise and information. I printed out ILADS guidelines and have read thru them several times...it is a lot to take in. I am here to learn. I will definitely check out the documentary and it is good to be forewarned to what I will be seeing. I am having some difficulty finding an LLMD in my area ( Minneapolis MN) Any suggestions where to find that information.
I did go back to my primary DR today and she gave me 4 weeks of doxy. Does that seem like an appropriate course of action until I can get an appointment with an LLMD?
I did go back to my primary DR today and she gave me 4 weeks of doxy. Does that seem like an appropriate course of action until I can get an appointment with an LLMD?
I think that Under Our Skin is an excellent documentary about Lyme disease. Yes it does show some people who were very sick. (May that never happen to you.)
But it also follows several of them through to better health--- so there is a 'happy ending' for most of them. Even the sickest of them gets better after long treatment. The woman who was the sickest got better--- a lot better.
In 2010 an Orlando newspaper reported that after two years of treatment she was roughly normal, able to work 20 hours a week and go to the grocery by herself.
After five years she was off meds completely. She was/is a full time nursing student and works out 4-5 days a week. She travels to Lyme disease events even those distant from where she lives.
I can furnish the link to that article if requested.
I've followed some of the other people in later years via the Internet and that shows them leading mostly healthy, productive lives.
Because of the presentation towards the end of the film of mostly recovered people, I think it's balanced.
I whole-heartedly recommend it to everyone. The message is---- there's hope for everyone.
I posted, in a separate thread, all the awards UOS has won.
http://www.medhelp.org/posts/Lyme-Disease/Critical-reviews-of-Under-Our-Skin/show/2051898#post_9709820
But it also follows several of them through to better health--- so there is a 'happy ending' for most of them. Even the sickest of them gets better after long treatment. The woman who was the sickest got better--- a lot better.
In 2010 an Orlando newspaper reported that after two years of treatment she was roughly normal, able to work 20 hours a week and go to the grocery by herself.
After five years she was off meds completely. She was/is a full time nursing student and works out 4-5 days a week. She travels to Lyme disease events even those distant from where she lives.
I can furnish the link to that article if requested.
I've followed some of the other people in later years via the Internet and that shows them leading mostly healthy, productive lives.
Because of the presentation towards the end of the film of mostly recovered people, I think it's balanced.
I whole-heartedly recommend it to everyone. The message is---- there's hope for everyone.
I posted, in a separate thread, all the awards UOS has won.
http://www.medhelp.org/posts/Lyme-Disease/Critical-reviews-of-Under-Our-Skin/show/2051898#post_9709820
I agree that 'Under Our Skin' is well done ... but it could be somewhat alarming if you are new to Lyme. Some of the patients featured are in pretty bad shape, and while we are all different in how we experience Lyme, I would venture to say most of us never get as bad as the worst cases shown in the film. So if you watch it, just remember the worst cases make the best film, and chances are you won't get any worse than you are already.
When I saw the film right after it came out, I was concerned that the presentation did not explain that most of us don't get like the bad-off people shown.
Bottom line: the film is more of an attention grabber than a balanced documentary.
When I saw the film right after it came out, I was concerned that the presentation did not explain that most of us don't get like the bad-off people shown.
Bottom line: the film is more of an attention grabber than a balanced documentary.
You could also watch free, the documentary "under our skin" its heavy duty when you first realize you have Lyme but its excellent to know! Just google it.
That's heartening to see that you followed up with suggestion to read at ILADS. The more you know about Lyme the better you'll be able to ask the right questions of any doctor you see. You were given a type of heave-ho in your first treatment, probably from an Infectious Disease doctor.
I'm sorry you have to learn about this illness----- but you can get better once you''re on the right track with a good Lyme specialist.
I'm sorry you have to learn about this illness----- but you can get better once you''re on the right track with a good Lyme specialist.
We've all been where you are -- and can understand why you are feeling scared. Part of feeling that way is a side effect of a Lyme infection -- it effects emotions and thinking as much as it does muscles and joints.
You could try taking magnesium (Mg) supplements because the Lyme bacteria use up Mg and it's easy to get deficient. Any type of Mg ending in '-ate' is supposed to be most absorbable, but *not* the combination of Mg and calcium sold under various names like CalMag -- the quality isn't as good in my opinion.
Mg malate, orotate, citrate, etc. are generally good, just stick with a good brand. And be SURE when you get to the Lyme doc's office to tell him/her that you are taking Mg supplements, so that can be factored into your presentation, that is, your symptoms and how you feel.
Good for you for jumping on this -- let us know how we can help -- we've all been where you are.
You could try taking magnesium (Mg) supplements because the Lyme bacteria use up Mg and it's easy to get deficient. Any type of Mg ending in '-ate' is supposed to be most absorbable, but *not* the combination of Mg and calcium sold under various names like CalMag -- the quality isn't as good in my opinion.
Mg malate, orotate, citrate, etc. are generally good, just stick with a good brand. And be SURE when you get to the Lyme doc's office to tell him/her that you are taking Mg supplements, so that can be factored into your presentation, that is, your symptoms and how you feel.
Good for you for jumping on this -- let us know how we can help -- we've all been where you are.
Thank you Cave and mojogal for your feedback. I am new to this and want to treat it the best I can. I checked out ILADS.org which was helpful. I am now searching for an LLMD in my area. I don't mind telling you I am pretty scared and I will act quickly!
You need to find an LLMD. Lyme literate Dr as cave said. You were way under treated plus Lyme can come with co-infections. I have 3. Only an LLMD will test and treat for these illnesses.
Lyme is the great imposter. I was misdiagnosed with MS, Lupus and more. Its important to get treated as soon as possible.
Lyme is the great imposter. I was misdiagnosed with MS, Lupus and more. Its important to get treated as soon as possible.
You were under-treated according to the ILADS guidelines. Please read the entire guidelines found at ILADS.org. You will find that doxycycline is usually the first antibiotic given BUT it's recommended for 300-400 mg a day for several months (at the very least) but usually until all symptoms are gone and then for three months more.
Lyme disease can be very serious if not treated sufficiently. And unfortunately most 'main stream' doctors will not treat it sufficiently.
Please read the Guidelines. They're worth the time, believe me.
Lyme disease can be very serious if not treated sufficiently. And unfortunately most 'main stream' doctors will not treat it sufficiently.
Please read the Guidelines. They're worth the time, believe me.
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