Aa
Answers needed
My story is long but I am tired of telling it. The most important part of whatever should know is that I just want answers! My sxs are as follows and came up in this order for the most part...a large cyst pops up behind right ear, my left leg begins to tingle and feel like it is asleep, then my left arm and hand do it as well, next my left side of my face....after that I begin to get scared and that is when the dizzy spells came on, I had to get help walking to the restroom to keep from falling down...next my short term memory was affected and I would get these sharp pains in my head, I have had ringing in my ears and pressure in my right ear, I have stomach issues too.
All these are hard to handle but the hardest part is that I feel off more often then not. I can't explain my off feeling but I know I am not myself. I even have had a shaky feeling come over me. This has been going on 8 yrs, and the testing has showed I have an autoimmune disorder, and a spot on the right side of my brain. I have been told it could be autoimmune disorder such as Fibromalagia but that was quickly taken off the table I have been told I could have MS but don't meet criteria fully. I am tired please someone give me suggestions...
Please I have been told it could be Lyme disease and up til now I had no insurance...but now I have insurance. About 6 months before all the sxs I had a bullseye bite on my leg. I blew it off...my husband thinks that this could all be Lyme disease...
The other thing that I must state is I always have been different. I don't get fever no matter what illness I have. I don't feel pain like I should, and I think something be wrong with my blood cause no bugs ever bite me anymore. Any answers or suggestions would be great. What questions should I be asking...how can I get answers???
All these are hard to handle but the hardest part is that I feel off more often then not. I can't explain my off feeling but I know I am not myself. I even have had a shaky feeling come over me. This has been going on 8 yrs, and the testing has showed I have an autoimmune disorder, and a spot on the right side of my brain. I have been told it could be autoimmune disorder such as Fibromalagia but that was quickly taken off the table I have been told I could have MS but don't meet criteria fully. I am tired please someone give me suggestions...
Please I have been told it could be Lyme disease and up til now I had no insurance...but now I have insurance. About 6 months before all the sxs I had a bullseye bite on my leg. I blew it off...my husband thinks that this could all be Lyme disease...
The other thing that I must state is I always have been different. I don't get fever no matter what illness I have. I don't feel pain like I should, and I think something be wrong with my blood cause no bugs ever bite me anymore. Any answers or suggestions would be great. What questions should I be asking...how can I get answers???
My first instinct is to say find an LLMD and see what he/she says. Sounds like you have a supportive hubby who might help with some of the investigative work?
I'm relatively newly immersed in the Lyme world but I do know that one of the toughest aspects of the Bb devil is that it manifests itself differently in everyone. If you had the bulls-eye, you were almost certainly exposed to the Lyme spirochete - listen to your husband on this one!
If I were in your shoes, I would be looking at 2 issues right now - finding an LLMD and also getting that brain spot looked into.
Also, be aware that while your insurance will probably help, many LLMDs are out of network for all insurances and sometimes the medicines are not covered. For prescriptions, when insurance doesn't cover there are other groups that have discount arrangements and cost nothing to "join" - I have saved considerable dollars already using goodrx (google it) when my insurance company thinks my prescriptions are unreasonable.
Re bug bites. Either you're lucky, or your system is simply not reacting to the bites anymore, which means you would never know you were bitten!
I'm relatively newly immersed in the Lyme world but I do know that one of the toughest aspects of the Bb devil is that it manifests itself differently in everyone. If you had the bulls-eye, you were almost certainly exposed to the Lyme spirochete - listen to your husband on this one!
If I were in your shoes, I would be looking at 2 issues right now - finding an LLMD and also getting that brain spot looked into.
Also, be aware that while your insurance will probably help, many LLMDs are out of network for all insurances and sometimes the medicines are not covered. For prescriptions, when insurance doesn't cover there are other groups that have discount arrangements and cost nothing to "join" - I have saved considerable dollars already using goodrx (google it) when my insurance company thinks my prescriptions are unreasonable.
Re bug bites. Either you're lucky, or your system is simply not reacting to the bites anymore, which means you would never know you were bitten!
Thanks today my app with my Nero was canceled due to emergency on his part. I saw this as a sign that maybe I need to start with a new doctor under my insurance. I heard here in tx it is hard to find an llmd doctor. I don't have much extra cash, but I will have to look into it and leave it in Gods hands.
As for the bug bites yeah my husband gets all bite up by Mosquitos and fleas but I don't get touched when I do they swell horribly. Those bites are super rare though.
As for the bug bites yeah my husband gets all bite up by Mosquitos and fleas but I don't get touched when I do they swell horribly. Those bites are super rare though.
Sounds like your husband attracts the biting bugs, so I think just stay next to him and be thankful!
If you can find find a good neuro under your insurance, personally I would go that route for the spot - there's usually no point in incurring extra cost if you don't have to (sometimes you have to). I found my LLMD through ILADS referral, but Jackie has posted other ways to connect with them - hopefully when she sees your post she will add it here.
I could find 3 within 150 miles but 2 of them treat the psychiatric issues associated with chronic disease so I feel thankful and lucky to have been able to get into the 3rd.
If you can find find a good neuro under your insurance, personally I would go that route for the spot - there's usually no point in incurring extra cost if you don't have to (sometimes you have to). I found my LLMD through ILADS referral, but Jackie has posted other ways to connect with them - hopefully when she sees your post she will add it here.
I could find 3 within 150 miles but 2 of them treat the psychiatric issues associated with chronic disease so I feel thankful and lucky to have been able to get into the 3rd.
Greetings -- sorry about all you are going through -- but you're in good company here.
There is a group called TXLDA, short for Texas Lyme Disease Association. If you type in just 'TXLDA' into your browser, the link will show up right away, no need to dig around on the 'net.
For a number of years, it was often difficult to find a good Lyme doc in Texas, because (as in some other states too) the TX state medical board didn't 'believe' in Lyme as anything serious and discouraged MDs from diagnosing and treating Lyme aggressively, resulting in docs keeping quiet to avoid hassles with the TX medical board bigwigs. BUT ....
... things may be changing in TX ... I just searched online for -- TXLDA --
and got a big website for TXLDA (which is an independent entity and NOT related to the TX state medical board). It looks like TXLDA is posting a bunch of information that could be quite useful in finding a Lyme doc near you. This is good!
(Poster 'grdner' above highlights the different levels of comfort Lyme docs have in being open about their more progressive views on Lyme, so the politics of Lyme are still an issue in some places, and TX may be one of those ... but it does sound like the TX medical board may be wising up.)
Generally speaking, in my personal experience, neurologists are often *not* tuned in to developments and approaches in Lyme diagnosis and treatment, tho some may be more open-minded than those I encountered. I would not however go that direction, having heard and seen too many situations where neurologists have seriously dropped the ball in diagnosing or attempting to treat patients with Lyme. It's not a failing of the doc, but a failing of the bigwigs in the neurology field, who cling to Lyme as being rare (it's not) and easy to cure with a couple weeks of doxycycline (doesn't work except almost immediately after a Lyme infection, and may not work at all on other infections [co-infections] the 'Lyme' ticks often bring along).
--->>> Why this chaos? Because MDs who belong to specialty areas like neurology and infectious diseases are heavily inclined to follow the rules of the governing boards of their specialty areas: if you are a neurologist, you usually belong to a national or international group (such as the American Academy of Neurology) which often set diagnostic and treatment standards for their area of medicine, and to go outside those standards can cause a doc to get disciplined or booted out of that field.
Such standards are a good idea when everyone agrees on the appropriate rules, but Mother Nature didn't sign up for that gig, and every so often a new ailment springs up for which there are NO fixed and permanent standards. AIDS was one of these new diseases a while back, and Lyme is (in my view) another such new disease (but note: AIDS and Lyme have nothing to do with each other). Nature changes, and the medical world needs to keep up ... but doesn't do it quickly.
In finding a Lyme doc near you, I would search the Lyme-related sources like TXLDA (Texas Lyme Disease ***'n) rather than start with your medical insurance directory of docs, because those directory docs may be bound by the outdated view of Lyme.
Docs often start their medical lives in categories such as ''infectious disease" or "immunology" or "pediatrics", and they tend to stay in those categories over time. Each of these categories can lead to a doc understanding about Lyme infections and spending a lot of time treating Lyme patients, but I would NOT expect to find an MD with business cards and ads saying "John Smith MD, Lyme Disease Specialist". It just doesn't usually happen that way, even when the doc spends most of his/her time in an area like Lyme. Instead, a doc's field of endeavor likely reflects the professional group the doc belongs to, like the IDSA aka Infectious Disease Society of America. Bottom line: what formal MD group docs belong to may have nothing to do with the voluntary groups like ILADS.
This is where patient-oriented groups can be handy, giving you hints about who they have had good experiences with in dealing with Lyme. You mention some docs you considered who are focused on psychiatric issues, and I too would have gone a different way. Bottom line: trust your instincts and what you hear from others, not the labels on the doc's business card.
On the flip side, there are docs who THINK they know a lot about Lyme, but really don't. If you realize you are seeing one of those, then quietly start shopping around for a new doc and make a lateral move when you think it's a good thing to do.
I know, I know ... it's bad enough being sick, and now we have to play silly games with doc labels. This is part of of the chaos from a newly discovered illness like Lyme. As mentioned already, a few decades ago, there were no docs who knew anything about AIDS either, but now there are docs who specialize in that area ... Mother Nature is tricky in these ways, and we just have to stay alert.
Hope this helps ... sorry to run on, but just wanted to give you some data that might be useful. Let us know how we can help! Best wishes --
There is a group called TXLDA, short for Texas Lyme Disease Association. If you type in just 'TXLDA' into your browser, the link will show up right away, no need to dig around on the 'net.
For a number of years, it was often difficult to find a good Lyme doc in Texas, because (as in some other states too) the TX state medical board didn't 'believe' in Lyme as anything serious and discouraged MDs from diagnosing and treating Lyme aggressively, resulting in docs keeping quiet to avoid hassles with the TX medical board bigwigs. BUT ....
... things may be changing in TX ... I just searched online for -- TXLDA --
and got a big website for TXLDA (which is an independent entity and NOT related to the TX state medical board). It looks like TXLDA is posting a bunch of information that could be quite useful in finding a Lyme doc near you. This is good!
(Poster 'grdner' above highlights the different levels of comfort Lyme docs have in being open about their more progressive views on Lyme, so the politics of Lyme are still an issue in some places, and TX may be one of those ... but it does sound like the TX medical board may be wising up.)
Generally speaking, in my personal experience, neurologists are often *not* tuned in to developments and approaches in Lyme diagnosis and treatment, tho some may be more open-minded than those I encountered. I would not however go that direction, having heard and seen too many situations where neurologists have seriously dropped the ball in diagnosing or attempting to treat patients with Lyme. It's not a failing of the doc, but a failing of the bigwigs in the neurology field, who cling to Lyme as being rare (it's not) and easy to cure with a couple weeks of doxycycline (doesn't work except almost immediately after a Lyme infection, and may not work at all on other infections [co-infections] the 'Lyme' ticks often bring along).
--->>> Why this chaos? Because MDs who belong to specialty areas like neurology and infectious diseases are heavily inclined to follow the rules of the governing boards of their specialty areas: if you are a neurologist, you usually belong to a national or international group (such as the American Academy of Neurology) which often set diagnostic and treatment standards for their area of medicine, and to go outside those standards can cause a doc to get disciplined or booted out of that field.
Such standards are a good idea when everyone agrees on the appropriate rules, but Mother Nature didn't sign up for that gig, and every so often a new ailment springs up for which there are NO fixed and permanent standards. AIDS was one of these new diseases a while back, and Lyme is (in my view) another such new disease (but note: AIDS and Lyme have nothing to do with each other). Nature changes, and the medical world needs to keep up ... but doesn't do it quickly.
In finding a Lyme doc near you, I would search the Lyme-related sources like TXLDA (Texas Lyme Disease ***'n) rather than start with your medical insurance directory of docs, because those directory docs may be bound by the outdated view of Lyme.
Docs often start their medical lives in categories such as ''infectious disease" or "immunology" or "pediatrics", and they tend to stay in those categories over time. Each of these categories can lead to a doc understanding about Lyme infections and spending a lot of time treating Lyme patients, but I would NOT expect to find an MD with business cards and ads saying "John Smith MD, Lyme Disease Specialist". It just doesn't usually happen that way, even when the doc spends most of his/her time in an area like Lyme. Instead, a doc's field of endeavor likely reflects the professional group the doc belongs to, like the IDSA aka Infectious Disease Society of America. Bottom line: what formal MD group docs belong to may have nothing to do with the voluntary groups like ILADS.
This is where patient-oriented groups can be handy, giving you hints about who they have had good experiences with in dealing with Lyme. You mention some docs you considered who are focused on psychiatric issues, and I too would have gone a different way. Bottom line: trust your instincts and what you hear from others, not the labels on the doc's business card.
On the flip side, there are docs who THINK they know a lot about Lyme, but really don't. If you realize you are seeing one of those, then quietly start shopping around for a new doc and make a lateral move when you think it's a good thing to do.
I know, I know ... it's bad enough being sick, and now we have to play silly games with doc labels. This is part of of the chaos from a newly discovered illness like Lyme. As mentioned already, a few decades ago, there were no docs who knew anything about AIDS either, but now there are docs who specialize in that area ... Mother Nature is tricky in these ways, and we just have to stay alert.
Hope this helps ... sorry to run on, but just wanted to give you some data that might be useful. Let us know how we can help! Best wishes --
Ha, looks like the robo-speller patrolling our humble site takes offense and blocks much of the last word of the name of the
Texas Lyme Disease Association
when, as I had typed it above, its last word 'Association' is abbreviated to A***'n, in order to avoid the appearance of a VULGAR word replacing the five letters "ociatio" -- ! Who knew that robospellers are so touchy!
That gave me a laugh!
Texas Lyme Disease Association
when, as I had typed it above, its last word 'Association' is abbreviated to A***'n, in order to avoid the appearance of a VULGAR word replacing the five letters "ociatio" -- ! Who knew that robospellers are so touchy!
That gave me a laugh!
When you said you have a cyst my first thought is Bartonella which is a co-infection of lyme. Due to my low immune system my body temp is always 97.3. Agreeing with everyone to get to an LLMD or LLND. If money is a problem you can go the herbal route.
Good luck!
Good luck!
What would be the herbal route...and the cyst could be another sign of Lyme...that is interesting every doctor over looks the cyst behind my right ear, and I have one starting to show up behind my left ear. The one behind my right ear showed up shortly after the bullseye and shortly before the sxs showed.
Thanks everyone...I guess I have alot research to do...
Thanks everyone...I guess I have alot research to do...
If you had a true erythrans migrans, you contracted lyme. No two ways about it. Not all people who get infected get the rash, but all rashes are caused by infection. but... i supposed it would be possible to have both - just a bit doubtful.
Reading what you wrote reminded me of the many years i suffered with all sorts of weird "things". I was eventually classified as a nut case. NOT. I was the only person who saw the 'rash', therefore medical people won’t consider it real. The short of the long of it is I spent many years in HELL from this fing disease. Back then, doctors had rarely heard of it, let alone in their community.
I learned a lot in the process of trying to find answers for all that ailed, and still can ail me. I am much better now, however, i have since been injured and never regained a decent energy level. I am convinced of several things: GARLIC, raw, luscious beautiful garlic is a fabulous antibiotic that saved me. Raw onions too. I craved them, i ate it and I still eat one or both of them every day. I gorge on it when it's first pulled in summer. Juicy, sweet and delicious. I eliminated every possible food additive, preservative etc. etc. and stay far away from foods that have been sprayed with pesticides, fungicides etc.... As truly organic as possible. I use unscented soaps and clean with baking soda and vinegar. I make my own skin creams. I spend a fair bit of time over food. I quit junk food in the 60s. I bake my own, slow-mo breads, put up summer fruits for winter etc. And never drink alcohol. I 'tested' every food for sensitivities. Soy is my only real culprit. Chemicals are my killers and triggers to things like migraines, tinnitus, bizarre sensations, etc..
I had loads of strange cysts and carbuncle thingies, particularly during perimenopause. I lanced them, pulled the crap out, they all healed and eventually stopped. I had all sorts of zinging nerves, stars before my eyes etc. – Ice pick in the eye stuff etc. mainly in the earlier years until the arthritises set in. I have a golf ball size meningioma on my brain and a big growth inside my shoulder. Little bits of evidence are surfacing that refer to lyme brain lesions and high incidence of alzheimer's in Lyme autopsies – and/or the other way around.
My personal take on it is, being a spirochete it’s a relative of syphilis, goes dormant etc, so perhaps we all die of insanity in the end anyway. If politics would stay out of it, i think you'd find the way it got to No. Am. was via plum island research... Along with morgellons. It also has a fairly well hidden shady history. Lyme is not an easy disease to treat, especially if it's been in the system along time. It hides. Literally. I just try to do my best not to rile things. It’s like a sleeping dragon I do my best no to wake. I can get feeling really crappy really fast if I eat wrong, get a load of chemicals (food, air, perfumes etc) or get over tired. Once set off, it’s like my whole system is plugged into an electrical socket screaming for someone to pull the breaker. My current dental issues could be enough to set it into motion. I could lose another week being sick to it. I didn’t know about and understand it until about 10 years ago. Even if I could get them, my body wouldn’t survive heavy antibiotics without further break-down so I chose to try to keep it at bay.
I highly recommend getting a copy of under our skin dvd. There's a new edition w/ follow-ups to the original film. Would give you a good idea as to how differently this disease can affect different people. It makes me question how many of my medical issues are lyme related but i know i'll never know. For 2-3 years (25-ish yrs ago) I was sure I had MS. It happens to be the most common mis-diagnoses for Lyme. No one deserves this stinking disease... Or MS or Gerigs etc etc. When you feel no one is listening, nobody cares, think of those of us who've gone before... We know what you’ve been through. Btw, who’s saying fibromyalgia is an auto-immune disorder/disease? There’s a lot of crap on the web, including on lyme. Read and learn all that you can. Don’t settle for a treatment because it gets more brownie points than another. Go with what you feel you need to do for you. Follow your instincts and listen to your gut. For most people, Lyme is a life changing experience. Wishing you the best on your journey.
Lymiebird
Reading what you wrote reminded me of the many years i suffered with all sorts of weird "things". I was eventually classified as a nut case. NOT. I was the only person who saw the 'rash', therefore medical people won’t consider it real. The short of the long of it is I spent many years in HELL from this fing disease. Back then, doctors had rarely heard of it, let alone in their community.
I learned a lot in the process of trying to find answers for all that ailed, and still can ail me. I am much better now, however, i have since been injured and never regained a decent energy level. I am convinced of several things: GARLIC, raw, luscious beautiful garlic is a fabulous antibiotic that saved me. Raw onions too. I craved them, i ate it and I still eat one or both of them every day. I gorge on it when it's first pulled in summer. Juicy, sweet and delicious. I eliminated every possible food additive, preservative etc. etc. and stay far away from foods that have been sprayed with pesticides, fungicides etc.... As truly organic as possible. I use unscented soaps and clean with baking soda and vinegar. I make my own skin creams. I spend a fair bit of time over food. I quit junk food in the 60s. I bake my own, slow-mo breads, put up summer fruits for winter etc. And never drink alcohol. I 'tested' every food for sensitivities. Soy is my only real culprit. Chemicals are my killers and triggers to things like migraines, tinnitus, bizarre sensations, etc..
I had loads of strange cysts and carbuncle thingies, particularly during perimenopause. I lanced them, pulled the crap out, they all healed and eventually stopped. I had all sorts of zinging nerves, stars before my eyes etc. – Ice pick in the eye stuff etc. mainly in the earlier years until the arthritises set in. I have a golf ball size meningioma on my brain and a big growth inside my shoulder. Little bits of evidence are surfacing that refer to lyme brain lesions and high incidence of alzheimer's in Lyme autopsies – and/or the other way around.
My personal take on it is, being a spirochete it’s a relative of syphilis, goes dormant etc, so perhaps we all die of insanity in the end anyway. If politics would stay out of it, i think you'd find the way it got to No. Am. was via plum island research... Along with morgellons. It also has a fairly well hidden shady history. Lyme is not an easy disease to treat, especially if it's been in the system along time. It hides. Literally. I just try to do my best not to rile things. It’s like a sleeping dragon I do my best no to wake. I can get feeling really crappy really fast if I eat wrong, get a load of chemicals (food, air, perfumes etc) or get over tired. Once set off, it’s like my whole system is plugged into an electrical socket screaming for someone to pull the breaker. My current dental issues could be enough to set it into motion. I could lose another week being sick to it. I didn’t know about and understand it until about 10 years ago. Even if I could get them, my body wouldn’t survive heavy antibiotics without further break-down so I chose to try to keep it at bay.
I highly recommend getting a copy of under our skin dvd. There's a new edition w/ follow-ups to the original film. Would give you a good idea as to how differently this disease can affect different people. It makes me question how many of my medical issues are lyme related but i know i'll never know. For 2-3 years (25-ish yrs ago) I was sure I had MS. It happens to be the most common mis-diagnoses for Lyme. No one deserves this stinking disease... Or MS or Gerigs etc etc. When you feel no one is listening, nobody cares, think of those of us who've gone before... We know what you’ve been through. Btw, who’s saying fibromyalgia is an auto-immune disorder/disease? There’s a lot of crap on the web, including on lyme. Read and learn all that you can. Don’t settle for a treatment because it gets more brownie points than another. Go with what you feel you need to do for you. Follow your instincts and listen to your gut. For most people, Lyme is a life changing experience. Wishing you the best on your journey.
Lymiebird
PS. Cysts could be caused by various factors. They are not particularly commonly listed in terms of Lyme. As with many illnesses, there’s a lot of cross over between symptoms. I just noted similarities between you and me. Things like brain lesions are things they don’t know a lot about yet. The gathering of information and data requires funding. Where does that funding usually come from? Big pharma. Current testing for Lyme is almost a joke. Advances in testing are happening but its slow.
Well… it’s too late to talk politics and probably not appropriate here anyway.
http://canlyme.com/ is a reputable site
Murakami’s site is also very trustworthy. It contains only good solid information. I met him just as he was retiring from practice. I know several people who were very successfully treated by him. He spent much of his lifetime researching and treating Lyme. Last I knew, he was still willing and able to do patient and doctor consultations. I talked with him several times. http://www.murakamicentreforlyme.org/About%20Lyme%20Disease.htm
cheers
Well… it’s too late to talk politics and probably not appropriate here anyway.
http://canlyme.com/ is a reputable site
Murakami’s site is also very trustworthy. It contains only good solid information. I met him just as he was retiring from practice. I know several people who were very successfully treated by him. He spent much of his lifetime researching and treating Lyme. Last I knew, he was still willing and able to do patient and doctor consultations. I talked with him several times. http://www.murakamicentreforlyme.org/About%20Lyme%20Disease.htm
cheers
Both of those latest post was very informative.
I got in contact with TXLDA yesterday. They sent me two providers both were a bit far but I reached out to one today. I hope to get a response back, and find out that they will be able to help me get answers. To be honest my sxs while they are annoying come and go so often I have gotten use to them. I learned my own ways to handle them. The sxs just scared my husband and he is concerned about my future.
I got in contact with TXLDA yesterday. They sent me two providers both were a bit far but I reached out to one today. I hope to get a response back, and find out that they will be able to help me get answers. To be honest my sxs while they are annoying come and go so often I have gotten use to them. I learned my own ways to handle them. The sxs just scared my husband and he is concerned about my future.
Lymiebird's comments are well put -- and glad that you contacted TXLDA. If the first two names you got from them don't work out for whatever reason, keep trying. Lyme is a tricky customer, and different docs react and understand to it in different ways, some more helpful than others. If Lyme were all worked out now, all of this wouldn't be so ragged and jagged. That means changing docs is not an uncommon thing.
I went through many MDs (~20 of them) before I finally got a Lyme diagnosis, and that doc (with a positive Lyme test in hand) said I 'couldn't possibly have Lyme.' Well, that doc was way wrong, but the test was right, and that was what led me to find my Lyme doc who got me well.
Zigs and zags in Lyme diagnosis and treatment are quite common, so take it in stride, and keep going till you find the right doc. Keep us posted -- sending you all good wishes -- and don't give up! You go.
I went through many MDs (~20 of them) before I finally got a Lyme diagnosis, and that doc (with a positive Lyme test in hand) said I 'couldn't possibly have Lyme.' Well, that doc was way wrong, but the test was right, and that was what led me to find my Lyme doc who got me well.
Zigs and zags in Lyme diagnosis and treatment are quite common, so take it in stride, and keep going till you find the right doc. Keep us posted -- sending you all good wishes -- and don't give up! You go.
Once again everyone for your comments. I got my family supporting me now to after I explained all the research and what I had found out about Lyme. I will be calling one of the doctors tomorrow if I don't hear back soon. It said to email for an app, but I haven't received a response.
I will keep everyone posted thanks again.
I will keep everyone posted thanks again.
Good for you! Do follow up with the doc's office, but don't take it personally if you don't get in to see the doc right away ... the end of summer (meaning now) is often the busiest time for Lyme docs, because so many newly bitten people are realizing that they may have gotten Lyme in the summer.
If you let the doc's office know how far away you are from them ("a half-hour drive" or whatever), then if they have a cancellation, they may be able to get you in on short notice if there is a cancellation. This dynamic may not apply exactly to Austin, since your weather pattern (and the bacteria's reaction to it) may be different ... I dunno ... but if you're ready to get to the doc on short notice, be sure the doc's office knows you are flexible that way.
Keep us posted! We're rooting for you.
If you let the doc's office know how far away you are from them ("a half-hour drive" or whatever), then if they have a cancellation, they may be able to get you in on short notice if there is a cancellation. This dynamic may not apply exactly to Austin, since your weather pattern (and the bacteria's reaction to it) may be different ... I dunno ... but if you're ready to get to the doc on short notice, be sure the doc's office knows you are flexible that way.
Keep us posted! We're rooting for you.
Yeah they haven't picked up or respond looking into some more doctors. My husband wants me so bad to get answers ASAP and doesn't understand why I can't. I think it is more concern that drives him than anything else....but I will truly keep ya posted. If there is anyone else in austin and can recommend a Lyme doctor I would be grateful...
Consider asking your hubby to make the calls to find a doc and book an appointment.
Those who haven't had Lyme don't have reason to understand how hard it can be to think through even simple things. There's a reason for the term 'brain fog.' I used to describe how I felt as a combination of the flu and a hangover ... all day, every day. We have had posters here whose families think the ailing person is simply faking -- because as they are told: 'Gee, you don't *look* sick.' If your husband doesn't have time to do the work to find a Lyme doc, then ask a good friend.
It would have helped me when I was so ill to have someone
-- research online for referral sources (like ILADS) and local Lyme groups
-- then list names of Lyme docs nearby
-- then make the calls to see if the doc(s) are taking new patients and how soon
-- dig around online to see what comments others might have made (if someone likes a doc, they are inclined to say so, but if patients are quiet about liking the doc, then maybe it's because they *didn't* like him/her
-- have the friend (or your hubby) write down notes about each possible doc -- doc's name, address, name of the practice if any ('Hickory Health Care'), how soon the doc can see a new patient, what insurance they take (if any), how long to get an initial appointment, etc. That's a lot of work for someone with the brain fog of Lyme, and it's what friends are for.
It's important for the data to be WRITTEN DOWN, because memory can be very poor when one has Lyme (it works again after Lyme is treated). My most frequent response when I was ill: "I don't know." And it was true: I simply didn't know or recall.
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Have you contacted TXLDA [Texas Lyme Disease Association]? If you did and the first names you were given didn't work for whatever reason, call back and ask for more names. Keep notes of everything like this, and that means having pen and paper at hand to overcome brain fog's forgetfulness.
I just searched online for
-- LLMD austin texas --
and got a ton of information. If you aren't making progress, it's not your fault, it's the Lyme. Get a friend or relative to help.
Take care, and keep us posted! You can do this.
Those who haven't had Lyme don't have reason to understand how hard it can be to think through even simple things. There's a reason for the term 'brain fog.' I used to describe how I felt as a combination of the flu and a hangover ... all day, every day. We have had posters here whose families think the ailing person is simply faking -- because as they are told: 'Gee, you don't *look* sick.' If your husband doesn't have time to do the work to find a Lyme doc, then ask a good friend.
It would have helped me when I was so ill to have someone
-- research online for referral sources (like ILADS) and local Lyme groups
-- then list names of Lyme docs nearby
-- then make the calls to see if the doc(s) are taking new patients and how soon
-- dig around online to see what comments others might have made (if someone likes a doc, they are inclined to say so, but if patients are quiet about liking the doc, then maybe it's because they *didn't* like him/her
-- have the friend (or your hubby) write down notes about each possible doc -- doc's name, address, name of the practice if any ('Hickory Health Care'), how soon the doc can see a new patient, what insurance they take (if any), how long to get an initial appointment, etc. That's a lot of work for someone with the brain fog of Lyme, and it's what friends are for.
It's important for the data to be WRITTEN DOWN, because memory can be very poor when one has Lyme (it works again after Lyme is treated). My most frequent response when I was ill: "I don't know." And it was true: I simply didn't know or recall.
-------------------------------------
Have you contacted TXLDA [Texas Lyme Disease Association]? If you did and the first names you were given didn't work for whatever reason, call back and ask for more names. Keep notes of everything like this, and that means having pen and paper at hand to overcome brain fog's forgetfulness.
I just searched online for
-- LLMD austin texas --
and got a ton of information. If you aren't making progress, it's not your fault, it's the Lyme. Get a friend or relative to help.
Take care, and keep us posted! You can do this.
... and PS, this is the season (late summer) to find docs to deal with new Lyme infections people got during summer, so just be persistent in finding a doc.
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