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Good morning all, I was told by Rico I should post here. I am a 28 yrold female and live in Texas. I love to hike and be outdoors. About 4 yrs ago my health took a harsh hit. Now I am stuck in limbo land.
It all started with a week of dizzy spells, a week of headaches, and tingling in left leg, arm and face. After going to the ER twice and being told it was vertigo and migraines, I decided I needed more answers.
I found a primary who did some blood work, and told me she thought it could be fibro. The blood work showed up positive ana 1:160. then later negative, then agian positive 1:80. By this point, I was having pain in my legs and arms as well. So after a yr of trying to find a way to a rhuemy. I finally got into one. He took a five min look at me said it wasn't fibro and walked out.
This made me cry not cuase I wanted fibro but becuase I needed answers. Next they sent me to a nuero. He believed i could have MS. Blood work showed my b12 was low, and they ruled out alot of things. Next they got an MRI, I had one lesion on the right side of my brain. They believed this was effecting my left leg, which by this point was tingling at times to the point that it kept me up at night. My nuero also did a nerve test and LP but nothing came of these test.
During all this my stomach started to have issues, and the pain in my wrist became worst. The nuero during this time said I had RLS, carpel tunnel, and my primary said I had IBS. Well I was dropped from my medical program.
Now 4 yrs later I found enough cuase to get back on the journey to dxs after a severe sinus infecatation. All the sxs came back, and the pain in my wrist got worse. A pain in my right knee made it hard on me to work and i burnt myself due to a duzzy spell at work. The medical program took me back and I have already had blood work done. Once agian slightly low b12 reading, ANA positive 1:80. I had an MRI Friday today I will get results from that. I am suppose to go back to my nuero.
And while I trust my doctors I have been told Lyme tends to be overlooked here in Texas. So my question is could I have lymes? What test do I need to have done if so? I mean I don't remember having a tick bite but I know it is still possible. Especially still possible since the woods is my second home. I love to go out and hike to get away from stress. May God bless everyone in this forum. Thanks in advance this who post back. I just pray I didn't forget any valuable information that could help those out there give me some advice.
May God bless you,
Kimberly
It all started with a week of dizzy spells, a week of headaches, and tingling in left leg, arm and face. After going to the ER twice and being told it was vertigo and migraines, I decided I needed more answers.
I found a primary who did some blood work, and told me she thought it could be fibro. The blood work showed up positive ana 1:160. then later negative, then agian positive 1:80. By this point, I was having pain in my legs and arms as well. So after a yr of trying to find a way to a rhuemy. I finally got into one. He took a five min look at me said it wasn't fibro and walked out.
This made me cry not cuase I wanted fibro but becuase I needed answers. Next they sent me to a nuero. He believed i could have MS. Blood work showed my b12 was low, and they ruled out alot of things. Next they got an MRI, I had one lesion on the right side of my brain. They believed this was effecting my left leg, which by this point was tingling at times to the point that it kept me up at night. My nuero also did a nerve test and LP but nothing came of these test.
During all this my stomach started to have issues, and the pain in my wrist became worst. The nuero during this time said I had RLS, carpel tunnel, and my primary said I had IBS. Well I was dropped from my medical program.
Now 4 yrs later I found enough cuase to get back on the journey to dxs after a severe sinus infecatation. All the sxs came back, and the pain in my wrist got worse. A pain in my right knee made it hard on me to work and i burnt myself due to a duzzy spell at work. The medical program took me back and I have already had blood work done. Once agian slightly low b12 reading, ANA positive 1:80. I had an MRI Friday today I will get results from that. I am suppose to go back to my nuero.
And while I trust my doctors I have been told Lyme tends to be overlooked here in Texas. So my question is could I have lymes? What test do I need to have done if so? I mean I don't remember having a tick bite but I know it is still possible. Especially still possible since the woods is my second home. I love to go out and hike to get away from stress. May God bless everyone in this forum. Thanks in advance this who post back. I just pray I didn't forget any valuable information that could help those out there give me some advice.
May God bless you,
Kimberly
We'll be here when you're back -- keep us posted -- and remember not to necessarily take the neurologist's pronouncements as the final word. Neuros for the most part are not tuned in to Lyme, so they tend to overlook or dismiss the possibility and the importance of it.
Hang on!
Hang on!
I got the results over the phone was told no big changes. I still have only one lesion. I go to my nuero next Thursday. I doubt anything will come of that appt.
But I going to fight for answers. I remember back a few years ago I had the bullseye rash. From what I understand that goes with lymes. Back then with no insurance. I just watched it closely. I figured it was a spider bite or something like that. Now I believe it was a tick bite. I never saw a tick so I didn't think tick.
Now I only wish I could remember if that was before my sxs started. My nuero has said no to MS yet, but I don't suspect MS due to my joint pain. From what I have read lymes hits your knees hard. My right knee sometimes makes me want to cry becuase of the pain.
In fact, I never come home from work, but a few weeks back I had no choice. Nothing was helping the pain.
My nuero I pray listens to me. I also pray that I remember what I need to. I plan on writing it down. But my short term memory has been horrible lately. I can't remember one second to the next. I am always forgetting what I was doing.
Well, I have alot to do today. In a short amount of time. So I must get off here. Thanks to everyone who has posted. I feel maybe I will get answers this time. May God Bless You All,
Kimberly
But I going to fight for answers. I remember back a few years ago I had the bullseye rash. From what I understand that goes with lymes. Back then with no insurance. I just watched it closely. I figured it was a spider bite or something like that. Now I believe it was a tick bite. I never saw a tick so I didn't think tick.
Now I only wish I could remember if that was before my sxs started. My nuero has said no to MS yet, but I don't suspect MS due to my joint pain. From what I have read lymes hits your knees hard. My right knee sometimes makes me want to cry becuase of the pain.
In fact, I never come home from work, but a few weeks back I had no choice. Nothing was helping the pain.
My nuero I pray listens to me. I also pray that I remember what I need to. I plan on writing it down. But my short term memory has been horrible lately. I can't remember one second to the next. I am always forgetting what I was doing.
Well, I have alot to do today. In a short amount of time. So I must get off here. Thanks to everyone who has posted. I feel maybe I will get answers this time. May God Bless You All,
Kimberly
Oh, yeah, and to answer your question about symptoms coming and going, I had that, too. For nearly five years, I had these strange "attacks" that felt just like the time I had a bad case of Mononucleosis. I would get them once or twice a year, usually associated with stress. They would last from several days to three weeks and then I would recover. I would usually be flat out and unable to do anything for at least a couple days during these attacks.
I did notice that I felt "flat" during my "well" times, both emotionally and physically. I just didn't have as much energy and enthusiasm for life as I used to. My doctor thought it was aging (I turned 40 shortly after my tick bite) and my hormones.
Then, after two years of chronic stress, chronic symptoms started one st a time. fatigue, brain fog, wild hormone swings, light sensitivity and tinnitus.
Then, my persistent shortness of breath started a few days after my husband's emergency appendectomy (he'd never been that sick before). I was misdiagnosed with allergies and then asthma and given steroids. Since steroids suppress the immune system, I really went downhill after that. That is when it really got into my CNS and started with the MS mimicking symptoms, as well as the GI symptoms.
I had to figure it out for myself, along with help from people on message boards like MedHelp. The Burrascano's symptom list was also like a light turning on for me. I had 21 symptoms on his list, and every time I got a new symptom, I looked it up and found it there. I think I the moment I was convinced I had Lyme was when I saw Carrie's older post about having 20 brain lesions. I had just learned that I, too, had 20 brain lesions that didn't fit the MS profile.
I have since learned to trust my own feelings/symptoms over a doctor who doesn't understand them, or is perplexed by them. I was rudely shushed by a hospitalist who curtly said, "None of us think you have Lyme!" Well, they were wrong. They just aren't willing to admit they are wrong, as they can't wrap their minds around the idea that the "establishment" view and teaching about Lyme is wrong or grossly inadequate.
I did notice that I felt "flat" during my "well" times, both emotionally and physically. I just didn't have as much energy and enthusiasm for life as I used to. My doctor thought it was aging (I turned 40 shortly after my tick bite) and my hormones.
Then, after two years of chronic stress, chronic symptoms started one st a time. fatigue, brain fog, wild hormone swings, light sensitivity and tinnitus.
Then, my persistent shortness of breath started a few days after my husband's emergency appendectomy (he'd never been that sick before). I was misdiagnosed with allergies and then asthma and given steroids. Since steroids suppress the immune system, I really went downhill after that. That is when it really got into my CNS and started with the MS mimicking symptoms, as well as the GI symptoms.
I had to figure it out for myself, along with help from people on message boards like MedHelp. The Burrascano's symptom list was also like a light turning on for me. I had 21 symptoms on his list, and every time I got a new symptom, I looked it up and found it there. I think I the moment I was convinced I had Lyme was when I saw Carrie's older post about having 20 brain lesions. I had just learned that I, too, had 20 brain lesions that didn't fit the MS profile.
I have since learned to trust my own feelings/symptoms over a doctor who doesn't understand them, or is perplexed by them. I was rudely shushed by a hospitalist who curtly said, "None of us think you have Lyme!" Well, they were wrong. They just aren't willing to admit they are wrong, as they can't wrap their minds around the idea that the "establishment" view and teaching about Lyme is wrong or grossly inadequate.
Definitely tell the doc about the bulls eye rash. That just about guarantees you'll get tested. But you want to ask for the Western Blot. According to the CDC, the WB is only run if the screening test is positive. The problem is that the screening tests are really poor. A number of doctors who treat a lot of Lyme say about 30% of patients test false negative on the screening test. Unfortunately, the CDC ignores this evidence.
The WB is a better test, but too many people test false "negative" on that, too. I was CDC negative on my Western Blot at IGeneX, but I showed Lyme specific antibodies that the CDC ignores. IGeneX and my LLMD said I was positive.
Other labs don't typically report any other "bands" on the test, except what's in the CDC criteria. This criteria has been devastating for Lyme patients as false negative people don't get diagnosed or treated. The tests have never been validated in a region outside New England, even though other geographic areas have much more genetic diversity of the Lyme bacteria.
If your doc says there is no Lyme in Texas, perhaps you could show him/her an article from June '12 about how a Texas A & M University professor and her team collected ticks from all over the state and found a quarter of them had Lyme.
The WB is a better test, but too many people test false "negative" on that, too. I was CDC negative on my Western Blot at IGeneX, but I showed Lyme specific antibodies that the CDC ignores. IGeneX and my LLMD said I was positive.
Other labs don't typically report any other "bands" on the test, except what's in the CDC criteria. This criteria has been devastating for Lyme patients as false negative people don't get diagnosed or treated. The tests have never been validated in a region outside New England, even though other geographic areas have much more genetic diversity of the Lyme bacteria.
If your doc says there is no Lyme in Texas, perhaps you could show him/her an article from June '12 about how a Texas A & M University professor and her team collected ticks from all over the state and found a quarter of them had Lyme.
You can do it! You got this far and you found us, a band of happy warriors if there ever was one.
Tell your new doc about the bullseye rash ... docs looooove those, because it's an indicator that really means something.
Tell your new doc about the bullseye rash ... docs looooove those, because it's an indicator that really means something.
Thanks for posting. I only have one lesion still. At least that's what this MRI showed. I have done alot of research, and truly feel like this is where my problems come from. I had the bullseye rash even at one time.
I have fought so hard to get help. Now I am just praying I can fight to get the answers I deserve.
I have fought so hard to get help. Now I am just praying I can fight to get the answers I deserve.
We're glad to help however we can. Each of us came here ill and bewildered and sadly misunderstood by our docs ... or we wouldn't have been trolling the internet trying figure it all out.
Everyone's symptoms are a bit different... due partly to our own immune systems I think, and partly due to what other little treats the Lyme may left behind -- about half the time the ticks carry other diseases (called as a group 'co-infections') in addition to Lyme, and the mixture gives a confusing clinical picture to the docs, who then don't quite understand what's going on, so they sometimes reach for the nearest catch-all diagnosis: fibromyalgia, for example, which literally means 'fiber pain.' No cause is known for fibro, which matches nicely with the clueless docs.
Please do check back with us after you see your docs -- quite often the clueless docs don't know how clueless they are, because Lyme is just not on their radar screen, and if it is, they will often give a few weeks of abx and tell you you're cured even if your symptoms continue (they call it 'post-Lyme syndrome', meaning you are cured but your immune system didn't get the message).
There are many twists and turns, but you're on the path now, based on our collective experiences. No one here that I know of is medically trained, but we're glad to share our experiences with you. Take care, come back soon!
Everyone's symptoms are a bit different... due partly to our own immune systems I think, and partly due to what other little treats the Lyme may left behind -- about half the time the ticks carry other diseases (called as a group 'co-infections') in addition to Lyme, and the mixture gives a confusing clinical picture to the docs, who then don't quite understand what's going on, so they sometimes reach for the nearest catch-all diagnosis: fibromyalgia, for example, which literally means 'fiber pain.' No cause is known for fibro, which matches nicely with the clueless docs.
Please do check back with us after you see your docs -- quite often the clueless docs don't know how clueless they are, because Lyme is just not on their radar screen, and if it is, they will often give a few weeks of abx and tell you you're cured even if your symptoms continue (they call it 'post-Lyme syndrome', meaning you are cured but your immune system didn't get the message).
There are many twists and turns, but you're on the path now, based on our collective experiences. No one here that I know of is medically trained, but we're glad to share our experiences with you. Take care, come back soon!
Everything helps I have been researching lymes the past few days. I then googled images of tick bites. It's crazy but I think I had one on my leg and thought it was a spider bite. I honestly just assumed spider becuase of how ugly it was lol. So lymes is seeming more and more possible.
I read of some of the other early sxs. One was fever, but I never get fever no matter what is wrong with me. I don't even feel sick until the sickness becomes severe. So, maybe that is why I never had early sxs.
I have decided to ask my nuero and primary about lymes. Just to see if I can get help through them first. But if they don't seem to listen then I will find another path to take.
It's so crazy, but I know God brought me to medhelp. If it wasn't for these forums I would have never thought of lymes. I mean I was told I was tested for it. But I believe the test wasn't the one I needed.
I love to hike, and explorer the woods. I have camped out more then once. I told my husband my thoughts yesterday. He believes its a possibility too. He says that we use to go hiking and that more often back when this all started.
Alright, I have a couple of questions. One, so does the sxs come and go as mine have over the last four yrs. I mean their have been times I feel fine. Then out of no where something triggers all my sxs to act up again. This last time I got a sinus infecatation.
Also, can lymes cuase lymph node issues? I recently started having this pain in my neck under my jaw. I believe it's my lymph node.
Last of all, how is everyone : ) ? I just don't want this to be all about me. Plus maybe I can pray for those in need.
May God Bless You All,
Kimberly
I read of some of the other early sxs. One was fever, but I never get fever no matter what is wrong with me. I don't even feel sick until the sickness becomes severe. So, maybe that is why I never had early sxs.
I have decided to ask my nuero and primary about lymes. Just to see if I can get help through them first. But if they don't seem to listen then I will find another path to take.
It's so crazy, but I know God brought me to medhelp. If it wasn't for these forums I would have never thought of lymes. I mean I was told I was tested for it. But I believe the test wasn't the one I needed.
I love to hike, and explorer the woods. I have camped out more then once. I told my husband my thoughts yesterday. He believes its a possibility too. He says that we use to go hiking and that more often back when this all started.
Alright, I have a couple of questions. One, so does the sxs come and go as mine have over the last four yrs. I mean their have been times I feel fine. Then out of no where something triggers all my sxs to act up again. This last time I got a sinus infecatation.
Also, can lymes cuase lymph node issues? I recently started having this pain in my neck under my jaw. I believe it's my lymph node.
Last of all, how is everyone : ) ? I just don't want this to be all about me. Plus maybe I can pray for those in need.
May God Bless You All,
Kimberly
Totally off topic, but about your unsent message disappearing --
I think when MedHelp closes down the system (always seems to be without any notice), the text window will accept typing but can't lodge it anywhere, as it sounds like happened to you.
I think I have had success (when I get that 'you're not logged in' message) by highlighting the message I had already so laboriously typed, then 'copy' it so it's in your computer's short term memory, then log in at MedHelp, and 'paste' into a new window.
If it's really complicated or long message I couldn't duplicate easily from memory (memory? what memory?!), I will paste the copied message into a Word doc and save it, then log in to MedHelp, then copy/paste from Word into the MedHelp window. That way the text has been saved while in transit, just in case.
fwiw.
I think when MedHelp closes down the system (always seems to be without any notice), the text window will accept typing but can't lodge it anywhere, as it sounds like happened to you.
I think I have had success (when I get that 'you're not logged in' message) by highlighting the message I had already so laboriously typed, then 'copy' it so it's in your computer's short term memory, then log in at MedHelp, and 'paste' into a new window.
If it's really complicated or long message I couldn't duplicate easily from memory (memory? what memory?!), I will paste the copied message into a Word doc and save it, then log in to MedHelp, then copy/paste from Word into the MedHelp window. That way the text has been saved while in transit, just in case.
fwiw.
I posted a big ole reply and then medhelp asked me to sign in. (?) Then, my reply disappeared. :( Let's see if I can remember it all this late at night...
You do sound a lot like a case of late stage Lyme, especially the part about getting shuffled around to various doctors and nobody knows what is wrong with you. I believe I have heard of all your symptoms from other Lyme patients.
I have Lyme and Bartonella and when you have both, they are more likely to cause neuro and GI symptoms, mimicking MS and IBS. That is definitely the case for me.
If you are up for some research (I know it can be hard to absorb new info), perhaps some of these would be useful.
On why testing is so flawed... Articles by Tom Grier or the IGeneX website or the drjoneskids website under 'Tests explained.'
On GI problems: an article called "Bell's Palsy of the Gut," by Dr. Virginia T. Sherr. I was amazed at how accurately she described my symptoms.
On Lyme mimicking MS, google "Lyme misdiagnosed MS" or "Lyme mimic MS" to see what you find. There are several articles and papers out there an this topic. There is also one on the Columbia U Lyme group web site that mentions certain test results and how they usually vary between the two.
I hope this is helpful. Keep us posted!
You do sound a lot like a case of late stage Lyme, especially the part about getting shuffled around to various doctors and nobody knows what is wrong with you. I believe I have heard of all your symptoms from other Lyme patients.
I have Lyme and Bartonella and when you have both, they are more likely to cause neuro and GI symptoms, mimicking MS and IBS. That is definitely the case for me.
If you are up for some research (I know it can be hard to absorb new info), perhaps some of these would be useful.
On why testing is so flawed... Articles by Tom Grier or the IGeneX website or the drjoneskids website under 'Tests explained.'
On GI problems: an article called "Bell's Palsy of the Gut," by Dr. Virginia T. Sherr. I was amazed at how accurately she described my symptoms.
On Lyme mimicking MS, google "Lyme misdiagnosed MS" or "Lyme mimic MS" to see what you find. There are several articles and papers out there an this topic. There is also one on the Columbia U Lyme group web site that mentions certain test results and how they usually vary between the two.
I hope this is helpful. Keep us posted!
Thank you I am truly going to try to find some answers. Lyme is seeming more and more like a possibility. I don't want to let this get the best of me or my life
Thanks Jackie I just want to say how grateful I am for individuals like you and others on this page. Without yalls guidance and knowledge I wouldn't be back on the road to recovery. So a Big Thank you for spending the time answering people's question and giving them the tools to take charge of their own health. 'm eternity grateful to you and many others on this page!!!
So glad to hear you are progressing well! Keep us posted --
Best to you and your posse -- J.
Best to you and your posse -- J.
Looks Mojogal has some great info on some LLMD to help you .. You can also PM I will give mine LLMD name too if needed.
You bet there is Lyme in Texas .. I live in Texas with Lyme.. I to was transfered from Dr. To Dr. I was probably MS or it was all in my head! So I decided to take charge of my own health and wasn't going to allow any more Drs. blow anymore smoke or brush me off. I found this wonderful group here and they help guide me to finding LLMD. There are really knowledgable people here at Lyme Med Help. I receive treatment out of Texas from wonderful Dr who is helping me get my life back. I prayed from guidance from god for over 2 years when I become ill he lead me to this group who provided me with the tools to take charge of my health. Don't give up I know it crossed my mind many times but I realized I'm worth it and so are you!
Where in TX are you from? I lived in San Antonio where nobody believed in Lyme and was misdiagnosed with MS and Lupus and much more.
I joined a yahoo Texas Lyme support group. There was a doctor on there who has Lyme himself. He saved my life. There are LLMD's in some big cities in TX but in that yahoo group, they can recommend good ones. Not every LLMD is good. If you PM me, I can tell you in more detail. We never give out names on here, especially in Tx, the medical boards take the good docs licenses away.
Don't give up, we are here to help!
I joined a yahoo Texas Lyme support group. There was a doctor on there who has Lyme himself. He saved my life. There are LLMD's in some big cities in TX but in that yahoo group, they can recommend good ones. Not every LLMD is good. If you PM me, I can tell you in more detail. We never give out names on here, especially in Tx, the medical boards take the good docs licenses away.
Don't give up, we are here to help!
oops, hit the send button too soon ... many of us never see at tick or get a rash, so if someone tells you that you can't have Lyme bec. of no tick or rash, they do not know what they are talking about!
Welcome! Sorry you need to be here, but glad you found us. Others will chime in here, but my quick reaction is that you are going through the same medical circus that many, many of us have also experienced. You are not alone.
It is true that Texas is not a place easy to get a diagnosis (or appropriate treatment) for Lyme disease. In the US (and the world for that matter) there is a serious split among docs as to whether Lyme is common or rare and serious or trivial. You have met docs in the 'rare and trivial' bunch.
In many states (like California) docs are protected by 'freedom of conscience' rules as to how they practice: they are trusted to pursue what they believe is right for their patients. Other states (apparently like Texas) are heavy-handed and lay down rules about what can and cannot be diagnosed, as though all knowledge has already been discovered and anything new is irrelevant.
Well, Lyme is an emerging disease, so we are all on the cutting edge of medicine. So ... what to do about it?
There is a Texas Lyme disease association I have run across on the 'net, and that's where I'd start. You can also googlesearch for -- texas lyme disease -- and see what you get. I know we have had people post here who are in Texas, so you can search in the tiny box on the right hand side of this page toward the top ('search this community') by putting in -- dallas lyme -- and other word combos that might fetch up some past posts in this forum.
There are docs who understand Lyme for the devil that it is, and once you find a good doc, things will get better. The type of specialist is always a question, since medicine is organized around specialties -- you hurt your foot, go to an orthopedist, etc. Lyme cuts across many disciplines, and the most likely types of docs (including the ones you have already seen) who would treat an infectious disease with these symptoms are unfortunately too often the ones who drank the koolaid and do believe in Lyme as rare, hard to get, and easy to cure.
Rheumatologists, infectious disease docs and neurologists are at the top of the list of Lyme-deniers, but there are individual exceptions ... tho few. The governing bodies for those specialties have laid down the rules for how to diagnose and treat Lyme and its co-infections (other diseases carried by the same ticks), and that is the wall you are running into, on top of being in Texas where the state medical board is heavy-handed imo.
I'm not medically trained, but I did have Lyme, and it took me 20+ docs to get a diagnosis ... in California, where docs can practice pretty much as they please. There is ignorance all about. The important thing is not what speciality a doc is, but what his/her level of awareness and openmindedness is ... and, in Texas, how strong they are to stand up against the medical board ... or how adept they are at staying out of the spotlight. You could even consider traveling outside Texas for treatment, but first I'd look locally. Lyme is not a quick cure, due to its ability to hide in the body, so you'll get to know your doc pretty well in the course of this. That said, some people travel long distances to see a doc they trust.
A few more quick notes before I dash --
-- get copies of all your lab tests and MRIs etc., as you go along and keep them in a folder or binder. It could be useful to a future doc, and asking later for copies is a chancy proposition: doc's offices hate spending money on paper and toner, and the staff always give me the dead eye when I ask for copies. I think by law you are entitled to copies, but in any event, always ask and get all test results etc.
-- an MRI is not particularly diagnostic of Lyme. "Lesions" shown on an MRI could be MS or Lyme or could something else. A Lyme specialist is more likely to use a SPECT scan.
-- you ask what tests you should have done: there are many tests, and Lyme often is accompanied by other diseases carried by the same ticks, which need separate testing. A Lyme can tell by your history and symptoms which tests to order. Some patients want to have all the appropriate tests run now and THEN take them to a Lyme doc, but in my untrained, nonmedical opinion, that is putting the cart before the horse. The tests are imperfect, and the mix of Lyme and co-infections makes knowing what tests to order a near impossibility. It is not uncommon for people posting here (quite recently in fact) to find out after some period of treatment that they actually have one or more additional infections that did not show up on tests early on, because Lyme suppresses the immune system, and the basic Lyme tests rely on the immune system response for a positive test. I would first find a good doc, and let the doc chose the tests. It's faster and cheaper and more reliable. Not a DIY project.
-- You will see the term LLMD: it is not a degree or title, but is patient slang for an MD who thinks more progressive thoughts about Lyme and its co-infections: a "Lyme-literate MD." An LLMD can be any kind of doc in any specialty or a GP -- what matters is an open mind and an interest in figuring out a medical mystery.
-- ILADS, short for Intl Lyme and Associated Diseases Society, is the main voluntary group for LLMDs. Their website is at ILADS [dot] org, and if you email to
--- contact [at] ILADS [dot] org ---
and tell them where you are and where you can travel to, they can send you names of ILADS member-docs near you. It's no guarantee of a good doc, but it's a place to start. First tho, I would try your local resources like the TXLDA, Texas Lyme disease association.
Gotta run, let us know how we can help.
Only one piece of advice: Don't Give Up!
It is true that Texas is not a place easy to get a diagnosis (or appropriate treatment) for Lyme disease. In the US (and the world for that matter) there is a serious split among docs as to whether Lyme is common or rare and serious or trivial. You have met docs in the 'rare and trivial' bunch.
In many states (like California) docs are protected by 'freedom of conscience' rules as to how they practice: they are trusted to pursue what they believe is right for their patients. Other states (apparently like Texas) are heavy-handed and lay down rules about what can and cannot be diagnosed, as though all knowledge has already been discovered and anything new is irrelevant.
Well, Lyme is an emerging disease, so we are all on the cutting edge of medicine. So ... what to do about it?
There is a Texas Lyme disease association I have run across on the 'net, and that's where I'd start. You can also googlesearch for -- texas lyme disease -- and see what you get. I know we have had people post here who are in Texas, so you can search in the tiny box on the right hand side of this page toward the top ('search this community') by putting in -- dallas lyme -- and other word combos that might fetch up some past posts in this forum.
There are docs who understand Lyme for the devil that it is, and once you find a good doc, things will get better. The type of specialist is always a question, since medicine is organized around specialties -- you hurt your foot, go to an orthopedist, etc. Lyme cuts across many disciplines, and the most likely types of docs (including the ones you have already seen) who would treat an infectious disease with these symptoms are unfortunately too often the ones who drank the koolaid and do believe in Lyme as rare, hard to get, and easy to cure.
Rheumatologists, infectious disease docs and neurologists are at the top of the list of Lyme-deniers, but there are individual exceptions ... tho few. The governing bodies for those specialties have laid down the rules for how to diagnose and treat Lyme and its co-infections (other diseases carried by the same ticks), and that is the wall you are running into, on top of being in Texas where the state medical board is heavy-handed imo.
I'm not medically trained, but I did have Lyme, and it took me 20+ docs to get a diagnosis ... in California, where docs can practice pretty much as they please. There is ignorance all about. The important thing is not what speciality a doc is, but what his/her level of awareness and openmindedness is ... and, in Texas, how strong they are to stand up against the medical board ... or how adept they are at staying out of the spotlight. You could even consider traveling outside Texas for treatment, but first I'd look locally. Lyme is not a quick cure, due to its ability to hide in the body, so you'll get to know your doc pretty well in the course of this. That said, some people travel long distances to see a doc they trust.
A few more quick notes before I dash --
-- get copies of all your lab tests and MRIs etc., as you go along and keep them in a folder or binder. It could be useful to a future doc, and asking later for copies is a chancy proposition: doc's offices hate spending money on paper and toner, and the staff always give me the dead eye when I ask for copies. I think by law you are entitled to copies, but in any event, always ask and get all test results etc.
-- an MRI is not particularly diagnostic of Lyme. "Lesions" shown on an MRI could be MS or Lyme or could something else. A Lyme specialist is more likely to use a SPECT scan.
-- you ask what tests you should have done: there are many tests, and Lyme often is accompanied by other diseases carried by the same ticks, which need separate testing. A Lyme can tell by your history and symptoms which tests to order. Some patients want to have all the appropriate tests run now and THEN take them to a Lyme doc, but in my untrained, nonmedical opinion, that is putting the cart before the horse. The tests are imperfect, and the mix of Lyme and co-infections makes knowing what tests to order a near impossibility. It is not uncommon for people posting here (quite recently in fact) to find out after some period of treatment that they actually have one or more additional infections that did not show up on tests early on, because Lyme suppresses the immune system, and the basic Lyme tests rely on the immune system response for a positive test. I would first find a good doc, and let the doc chose the tests. It's faster and cheaper and more reliable. Not a DIY project.
-- You will see the term LLMD: it is not a degree or title, but is patient slang for an MD who thinks more progressive thoughts about Lyme and its co-infections: a "Lyme-literate MD." An LLMD can be any kind of doc in any specialty or a GP -- what matters is an open mind and an interest in figuring out a medical mystery.
-- ILADS, short for Intl Lyme and Associated Diseases Society, is the main voluntary group for LLMDs. Their website is at ILADS [dot] org, and if you email to
--- contact [at] ILADS [dot] org ---
and tell them where you are and where you can travel to, they can send you names of ILADS member-docs near you. It's no guarantee of a good doc, but it's a place to start. First tho, I would try your local resources like the TXLDA, Texas Lyme disease association.
Gotta run, let us know how we can help.
Only one piece of advice: Don't Give Up!
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I am so sorry that you are having to go through all of this. You are not alone!!! I have some of the same symptoms as you plus like 20 lesions on my brain - but not MS either...
Anyhow, I did test positive through Igenex Labs (a bunch of times). My symptoms flair and then go away and then come back. This happens all the time. But, I do believe that when I'm stressed or sick, this happens more. My symptoms came to be after gallbladder surgery and my doctors believe that the stress of the surgery caused my immune system to not be able to control the lyme. Makes sense I guess.
Anyhow, be forewarned that your neuro will most likely tell you "you don't have lyme". That is what mine did. He also told me it wasn't MS...so...I just don't know what to think sometimes about all of this. Anyhow, did you go to your neuro appt and get the results of your MRI yet? I have my early follow-up MRI in a few weeks although I'm going to see if I can move it up because I've now got a raging case of tinnitus (ear ringing) and anxiety all wrapped up together...
Ugh...
Good luck to you and keep us posted!