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How can I find an LLMD in MetroWest MA?
I tested positive in ELISA but negative on Western Blot. My current doctor denies I have Lyme and dismisses my symptoms. I have been on doxy for 3and a half weeks and will continue until day 28. I had a severe Herx Reaction that lasted two weeks. But symptoms continue. I am nauseous, depressed, and overwhelmingly fatigued every day. I have made an appointment Dr. Tredwell's clinic for infectious diseases but read they treat patients by current protocol and therefore don't get much help. If anyone can help me find a good LLMD in the Framingham area, I would be very grateful. Thank you
PS just read your initial post again ...
That you seem to have Herxed from the the doxycycline could be a sign that the doxy is killing off the Lyme bacteria, which is a good thing (except for how it's making you feel). Doxy only works in the early stages of Lyme, before the Lyme goes and hides in the body where doxy doesn't reach. It may be that the doc is on to something ...
As the Lyme bacteria die off, it's not uncommon to feel lousy, as you describe. I'm not clear on which of your docs are doing what, but it may be working. Since neither of your two current docs seem entirely tuned in to Lyme and how to deal with it, finding an experienced Lyme doc is not a bad idea, just to get another point of view.
Having a positive ELISA test as you do sure sounds like it could mean positive for Lyme, regardless of the doc's focus on W.blot.
Have you located a Lyme doc you would like to work with? If you're up to it, I'd start looking for an ILADS-type Lyme doc to transition to as soon as your current treatment is done, and getting that new doc lined up soon is good so there is minimal gap in your treatment. If you do find a new doc while you are still under the old doc's treatment, your new doc can likely transition you over to the new doc's practice ... no reason not to that I know of, but I wouldn't go cold turkey and stop the meds.
If you've not yet located a Lyme doc, I'd keep trying -- enlist friends and family to help you find a doc asap.
Here's a question: have you contacted ILADS for names of Lyme docs nearby? That's something friends/family can do for you.
I just now searched for
-- Massachusetts lyme disease specialists --
and got some very promising leads. Tho you likely don't feel like travelling, sometimes the best doc is a few miles away, and that's what friends and family are for: to haul you back and forth to the doc's office about once a month till you feel well enough to get yourself there.
I know all this sounds like more work for you when you just want to crawl into bed and stay there, but with help from family and friends, you can make it happen. You are working hard to get all this sorted out, but sometimes it really does take others to help you get it all organized and plowing ahead --
Also if you have not contacted any helpful local Lyme groups, that could be a good source of information, good docs, and how to cope with all you are deal with. Hang on! You are working hard, I know, and send you all good wishes and thoughts -- draft your family and friends, and that should help -- keep us posted -- I can tell you are determined, and that is definitely a good sign. Carry on! and keep us posted --
That you seem to have Herxed from the the doxycycline could be a sign that the doxy is killing off the Lyme bacteria, which is a good thing (except for how it's making you feel). Doxy only works in the early stages of Lyme, before the Lyme goes and hides in the body where doxy doesn't reach. It may be that the doc is on to something ...
As the Lyme bacteria die off, it's not uncommon to feel lousy, as you describe. I'm not clear on which of your docs are doing what, but it may be working. Since neither of your two current docs seem entirely tuned in to Lyme and how to deal with it, finding an experienced Lyme doc is not a bad idea, just to get another point of view.
Having a positive ELISA test as you do sure sounds like it could mean positive for Lyme, regardless of the doc's focus on W.blot.
Have you located a Lyme doc you would like to work with? If you're up to it, I'd start looking for an ILADS-type Lyme doc to transition to as soon as your current treatment is done, and getting that new doc lined up soon is good so there is minimal gap in your treatment. If you do find a new doc while you are still under the old doc's treatment, your new doc can likely transition you over to the new doc's practice ... no reason not to that I know of, but I wouldn't go cold turkey and stop the meds.
If you've not yet located a Lyme doc, I'd keep trying -- enlist friends and family to help you find a doc asap.
Here's a question: have you contacted ILADS for names of Lyme docs nearby? That's something friends/family can do for you.
I just now searched for
-- Massachusetts lyme disease specialists --
and got some very promising leads. Tho you likely don't feel like travelling, sometimes the best doc is a few miles away, and that's what friends and family are for: to haul you back and forth to the doc's office about once a month till you feel well enough to get yourself there.
I know all this sounds like more work for you when you just want to crawl into bed and stay there, but with help from family and friends, you can make it happen. You are working hard to get all this sorted out, but sometimes it really does take others to help you get it all organized and plowing ahead --
Also if you have not contacted any helpful local Lyme groups, that could be a good source of information, good docs, and how to cope with all you are deal with. Hang on! You are working hard, I know, and send you all good wishes and thoughts -- draft your family and friends, and that should help -- keep us posted -- I can tell you are determined, and that is definitely a good sign. Carry on! and keep us posted --
I just now searched this (Lyme) site for 'LLMD Framingham', and the only hit that came up was your original inquiry (and my response), so checking back here every day (or every few days) to see if anyone has responded is a good idea, but I would at the same time widen the possible pool of responses by searching also *on the web* (not just this site) for something like
"lyme disease" massachusetts
or another state or city, starting with locations close to where you live, and working you way outward, to keep the drive as short as possible.
It looks like Mass. takes Lyme quite seriously, and that's good news, so it might not be terribly hard to find a good Lyme doc.
Keep us posted!
"lyme disease" massachusetts
or another state or city, starting with locations close to where you live, and working you way outward, to keep the drive as short as possible.
It looks like Mass. takes Lyme quite seriously, and that's good news, so it might not be terribly hard to find a good Lyme doc.
Keep us posted!
Welcome to MedHelp Lyme ... but sorry you have joined the crowd! Not to worry, you are doing the right thing. I went through 20 MDs before one of them even *mentioned* the word 'Lyme', so you're way ahead of where I was.
My first stop would be going to the ILADS.org website and clicking on the 'physician referral' link. ILADS is short for International Lyme and Associated Diseases Society and is the main group in the US for MDs who understand Lyme and how to diagnose and treat it.
(As with any group of human in any field of study, not all ILADS members are as good as others, so keep your antennae up -- and also keep in mind that Lyme is a newly recognized infection that the medical profession is still wrestling with, so there is not just one single way to diagnose and treat Lyme and the other infections the 'Lyme' ticks often bring along. I would do a little 'internet diving' online to see what others say about a doc you are considering consulting with, just as more data points for you. If this is too much to handle for how you are feeling, ask a friend or relative to help.)
Another good way to find a good LLMD is through local Lyme groups, who will know the local docs *very* well simply by repeated encounters with your area neighbors. I just now searched online for
--- llmd framingham ma ---
and came up with some doctor names you may be able to vet as being good (or not-so-good) docs since you are in the area.
There is sometimes a good bit of bad-mouthing against Lyme physicians, whether by other docs (often by docs who don't 'believe' in Lyme as a serious ailment, but sometimes just because a patient didn't like the doc), so take it with a grain of salt if a possible doc for you gets some harsh comments online or elsewhere. For example, my Lyme doc has gotten cranky comments posted by other docs (!), and given the law of averages, some patients are bound to be unhappy with any doc, but my doc was just superb imo and I would definitely see him again if need be. Keep your antennae up and make up your own mind.
If you're not feeling up to all this researching, ask a friend or family member to help. Once diagnosed and treated, the brain comes back online! Let us know how we can help, and also how you do -- best wishes!
My first stop would be going to the ILADS.org website and clicking on the 'physician referral' link. ILADS is short for International Lyme and Associated Diseases Society and is the main group in the US for MDs who understand Lyme and how to diagnose and treat it.
(As with any group of human in any field of study, not all ILADS members are as good as others, so keep your antennae up -- and also keep in mind that Lyme is a newly recognized infection that the medical profession is still wrestling with, so there is not just one single way to diagnose and treat Lyme and the other infections the 'Lyme' ticks often bring along. I would do a little 'internet diving' online to see what others say about a doc you are considering consulting with, just as more data points for you. If this is too much to handle for how you are feeling, ask a friend or relative to help.)
Another good way to find a good LLMD is through local Lyme groups, who will know the local docs *very* well simply by repeated encounters with your area neighbors. I just now searched online for
--- llmd framingham ma ---
and came up with some doctor names you may be able to vet as being good (or not-so-good) docs since you are in the area.
There is sometimes a good bit of bad-mouthing against Lyme physicians, whether by other docs (often by docs who don't 'believe' in Lyme as a serious ailment, but sometimes just because a patient didn't like the doc), so take it with a grain of salt if a possible doc for you gets some harsh comments online or elsewhere. For example, my Lyme doc has gotten cranky comments posted by other docs (!), and given the law of averages, some patients are bound to be unhappy with any doc, but my doc was just superb imo and I would definitely see him again if need be. Keep your antennae up and make up your own mind.
If you're not feeling up to all this researching, ask a friend or family member to help. Once diagnosed and treated, the brain comes back online! Let us know how we can help, and also how you do -- best wishes!
1 Comments
Thanks Jackie,
I searched LLMD Framingham and it led me to this forum, so I hope someone can help!
I searched LLMD Framingham and it led me to this forum, so I hope someone can help!
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