Aa
Hello just wondering
I was wondering if I could possibly have Lymes been reading the forum for a few days figured I would post..
Last sept I had a bout of a dizzy type feeling like I had got off a roller coaster I was set to have surgery on sept 30th on my foot I told the dr about this sensation and he said surgery would not be a problem to go ahead with it..
When I woke up I seemed to feel ok but my vision was blurry with a ghost type vision thats still here.. I starteed seeing a neuro and my pcp I have had an mri/mra the dizzy feeling came back in november this is why I had these test. MY b12 was 286 so they started me on treatment for that and my vit D was 26 and started treatment for that..
I still have the off feeling my anxiety is up due to this feeling and I have a tremor type that when I squeeze things I seem to shake really bad or when I lift things I shake. When standing in place I feel as if my legs are shaking whren I start walking It goes away..
So the off feeling the shakiness and anxiety I did have a buzzing sound in my ears for about 3 months it went away but sometimes I feel a pressure type sensation I have been checked by a ENT doc as well.. All blood work has been normal AC1 liver function Electroltes kidney even got tested for neuro syphillis.. I have not been tested for lymes disease is it worth asking my doc to do this?????
I live in N.C. and reading on it it seems to be rare to get here.. I did last summer work in the yard work buisness so I could of easily been bitten by a tick and never seen it. I have had no rash the bullseye.. Do I have typical symptoms for lymes???
I am just ready to feel better again and feel like I am at a dead end road drs have nearly broke me and the neuro has said he dosent need to see me again.. I am on an anxiety med that he said was causing my tremor shaking stuff I find it hard to believe. Can anyone please help me????? Thanks..
Last sept I had a bout of a dizzy type feeling like I had got off a roller coaster I was set to have surgery on sept 30th on my foot I told the dr about this sensation and he said surgery would not be a problem to go ahead with it..
When I woke up I seemed to feel ok but my vision was blurry with a ghost type vision thats still here.. I starteed seeing a neuro and my pcp I have had an mri/mra the dizzy feeling came back in november this is why I had these test. MY b12 was 286 so they started me on treatment for that and my vit D was 26 and started treatment for that..
I still have the off feeling my anxiety is up due to this feeling and I have a tremor type that when I squeeze things I seem to shake really bad or when I lift things I shake. When standing in place I feel as if my legs are shaking whren I start walking It goes away..
So the off feeling the shakiness and anxiety I did have a buzzing sound in my ears for about 3 months it went away but sometimes I feel a pressure type sensation I have been checked by a ENT doc as well.. All blood work has been normal AC1 liver function Electroltes kidney even got tested for neuro syphillis.. I have not been tested for lymes disease is it worth asking my doc to do this?????
I live in N.C. and reading on it it seems to be rare to get here.. I did last summer work in the yard work buisness so I could of easily been bitten by a tick and never seen it. I have had no rash the bullseye.. Do I have typical symptoms for lymes???
I am just ready to feel better again and feel like I am at a dead end road drs have nearly broke me and the neuro has said he dosent need to see me again.. I am on an anxiety med that he said was causing my tremor shaking stuff I find it hard to believe. Can anyone please help me????? Thanks..
Sorry to post this late...You can try to ask your doctor to check vitamin D 1,25 dihydroxy level.
My vitamin D 25 was deficient, lower than your level of 26, but my Vitamin D 1,25 is over 110.
I had vitamin D treatment for one year, at high dose, D3 5,000 IU daily---my Vitamin D (D 25) does not budge. Just be aware of that.
If your Vit D 1, 25 came back high, it will point your doctor into direction that you are sick with something. Lyme is one of conditons known to create this ratio of low Vit D 25, and high Vit D 1,25.
There are other conditions known to cause such ratio, including lymphomna, sacroidosis-those I could think of right now.
By the way I had normal or high B12 leve, and I still had those symptoms you described too: tremor/shakeniess when hold things or stand, ghost images in visions (they sounds similiar to afterimage flashes which I have), dizzy, tingling feeling, buzzing in ears, pressure sensation, so on.
They abate a lot during Rocephin IV.
My vitamin D 25 was deficient, lower than your level of 26, but my Vitamin D 1,25 is over 110.
I had vitamin D treatment for one year, at high dose, D3 5,000 IU daily---my Vitamin D (D 25) does not budge. Just be aware of that.
If your Vit D 1, 25 came back high, it will point your doctor into direction that you are sick with something. Lyme is one of conditons known to create this ratio of low Vit D 25, and high Vit D 1,25.
There are other conditions known to cause such ratio, including lymphomna, sacroidosis-those I could think of right now.
By the way I had normal or high B12 leve, and I still had those symptoms you described too: tremor/shakeniess when hold things or stand, ghost images in visions (they sounds similiar to afterimage flashes which I have), dizzy, tingling feeling, buzzing in ears, pressure sensation, so on.
They abate a lot during Rocephin IV.
Unfortunately, because the mainstream doctors have mostly failed thousands of Lyme patients, there are plenty of cranks and plain old mediocre doctors out there who see an opportunity to make some money on cash-paying Lyme patients who want to get well.
Try a local Lyme support group. Mine sent me a surprisingly long list with one doctor in network only 15 minutes away. I decided not to go to that one because he didn't do IV abx, and I had significant CNS symptoms justifying it. I ended up with a doc with plenty of experience with neuroborreliosis like mine.
There are some docs out there who take insurance who are willing to go beyond the standard treatment. Of course, if your insurance company refuses to pay beyond 1 or 2 months, that's a different problem.
Try a local Lyme support group. Mine sent me a surprisingly long list with one doctor in network only 15 minutes away. I decided not to go to that one because he didn't do IV abx, and I had significant CNS symptoms justifying it. I ended up with a doc with plenty of experience with neuroborreliosis like mine.
There are some docs out there who take insurance who are willing to go beyond the standard treatment. Of course, if your insurance company refuses to pay beyond 1 or 2 months, that's a different problem.
why the MS talk I feel I have crossed that hurdle lol?? Oh and I will make sure I dont go to some guy who thinks vitamins are the answer and running unknown unreliable test on me!!
Also, some call themselves LLMD but really aren't. The one you mentioned sounds funny to me so it's important to be aware.
My pharmacist told me about a friend of hers misdiagnosed with MS (as I was) and spent 20 years in a wheelchair unable to walk due to steroids. It wasn't until her daughter started getting the same symptoms that they found an LLMD and now the friend is out of her wheelchair and walking.
My pharmacist told me about a friend of hers misdiagnosed with MS (as I was) and spent 20 years in a wheelchair unable to walk due to steroids. It wasn't until her daughter started getting the same symptoms that they found an LLMD and now the friend is out of her wheelchair and walking.
Much about Lyme is upside down. Many patients test false negative, many don't have the symptoms doctors were taught to look for, and doctors are unoredictable in whether they will follow the "party line" or will use their critical thinking to actually see the patient in front of them.
Unfortunately, doctors who teach at universities are often the biggest "Lyme deniers." They tend to follow the strict test interpretations and guidelines set down by the IDSA. These are very controversial, and many Lyme patient supporters have been working valiantly to get them to loosen up and acknowledge that Lyme is bigger and broader than they say it is. Some doctors are open to it and some are surprisingly almost hostile because of the conflict.
Dr. Jemsek was featured in the documentary "Under Our Skin" and he was in NC. He is now practicing in DC, which isn't exactly close to you. You could try a local Lyme support group for suggestions for doctors closer to home. Don't hesitate to travel. It may be the only way you can get your health back. I know it shouldn't be like this, but it is. I was really annoyed at the prospect of driving 50 miles to my nearest doc, but after meeting a patient who drove 8 hours, I realized how lucky I was to have one that close. Some of his patients fly in from out of state or out of the country to get treatment.
Unfortunately, doctors who teach at universities are often the biggest "Lyme deniers." They tend to follow the strict test interpretations and guidelines set down by the IDSA. These are very controversial, and many Lyme patient supporters have been working valiantly to get them to loosen up and acknowledge that Lyme is bigger and broader than they say it is. Some doctors are open to it and some are surprisingly almost hostile because of the conflict.
Dr. Jemsek was featured in the documentary "Under Our Skin" and he was in NC. He is now practicing in DC, which isn't exactly close to you. You could try a local Lyme support group for suggestions for doctors closer to home. Don't hesitate to travel. It may be the only way you can get your health back. I know it shouldn't be like this, but it is. I was really annoyed at the prospect of driving 50 miles to my nearest doc, but after meeting a patient who drove 8 hours, I realized how lucky I was to have one that close. Some of his patients fly in from out of state or out of the country to get treatment.
I will try to see if my dr will use them. At this point I found a dr close by but I can not afford and intial fee of 750 dollars plus other cost. Looks like first and second visit would cost me over 1000 dollars. I have insurance but they dont take that company go figure. So I am gonna have to stick it out with my regular dr until I can make other arrangements!!
Also looks like this guy puts you on some vitamin regimen before you even see him. You have to go to some kind of orientation then they set up another time to see actual nurse and Dr.. Wild we lol..
Also looks like this guy puts you on some vitamin regimen before you even see him. You have to go to some kind of orientation then they set up another time to see actual nurse and Dr.. Wild we lol..
It's very important to use igeneX labs to get accurate results. Otherwise you maybe told you are clean when you are not. Many of us have been through that.
The 'gold standard' for Lyme testing is IGeneX Labs in Palo Alto CA. NonLLMDs often don't use them, but that's just part of the controversy over Lyme generally. IGeneX has a website with lots of information about their testing if you (and/or your doc) are so inclined. They are very upfront about what they do and why they do it. Keep us posted.
I just hopr to find a treatment to get me feeling better... I was fine until I was getting ready foir surgery 3 weeks before I felt off after surgery I felt ok and when I started getting back to normal I felt off again its been a long road of different symptoms.. This off feeling and the shakiness bothers me the most... I am gonna talk to my dr hopefully he will consider the test being everything has been normal eexcept vitamin stuff...
I don't know for certain about how many LLMDs there are or aren't in NC, but in many states, LLMDs will hide out to avoid getting threatened by the local or state medical boards for 'over prescribing' antibiotics. It takes some searching sometimes, but it's worth it.
Also my Dr uses quest labs for any blood work he does. I looked them up they have very good information on the types of tick borne disease testing they do. I guess this could be my only option because it looks like there are very few llmd in n.c.
Thanks for the replies! Like I said I have been going to a Dr for months with no results except anxiety control.. My Dr is a great Dr he is only in office once a week and he teaches at a unerversity. So I am hoping he will listen to me on this if I cant find a specialist in my area!
I have to do something I may be getting a new job this week and I am not sure with the way I feel that I could perform to my best. I really just want to be over this. I feel like my 30s is a crisis in the making I am 38 and the last few yrs have been very stressful.. I hope I find an answer soon.. Again thanks
I have to do something I may be getting a new job this week and I am not sure with the way I feel that I could perform to my best. I really just want to be over this. I feel like my 30s is a crisis in the making I am 38 and the last few yrs have been very stressful.. I hope I find an answer soon.. Again thanks
Hi! I am glad you posted!
Like MS, everybody's Lyme story is unique. I, too, had low grade Lyme for nearly five years before chronic stress wore me down and chronic symptoms started. Even then, my progression was slow and mysterious for a year. I had severe hormone swings,hemorrhagic ovarian cysts, fatigue, tinnitus, light sensitivity, and then shortness of breath that got so bad I was diagnosed with asthma and put on steroids and immune suppressants. Then, I started a steep downhill slide for 3-4 months before I got my pathetic self to a LLMD.
That initial set of symptoms definitely does not sound like a typical Lyme Disease, but my downhill slide symptoms do. I also had tingling, tremor (in my right/dominant hand), shakiness, a blurry spot in my right eye, and overall vision deterioration to the point that I was sure I needed new prescriptions (I figured it was just aging), loss of appetite, weight loss, digestive problems, stomach pain, liver/gallbladder pain (tests were "normal"), and rib pain. I went eight months not being able to wear a bra, which is not a good thing for a middle aged woman!
Lyme likes tissues and can infect nearly any organ. It likes nerves, the brain, connective tissue, and joint fluid, the latter two being the low oxygen environments that it prefers. Any one person's symptoms depend on where the spirochetes decided to hang out in your body. Sometimes, they pack up and move someplace else, and a symptom goes away, followed by a new symptom.
There is definitely Lyme in NC. I know someone who moved from NC to my area a number of years ago, and she had a dog who limped, had swollen joints and seemed to be in a lot of pain. "She has arthritis." the woman said. The dog looked miserable to me. In hindsight now, I know the poor thing had Lyme and it went undiagnosed both here and in NC. The disease is terribly under reported, so there is probably more there than anyone realizes.
Check out Burrascano's symptom checklist. When I saw it, I realized some things I had attributed to aging were actually symptoms.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
And yes, get tested for Lyme. But educate yourself about testing. IGeneX is the best. I might have been diagnosed sooner if I hadn't tested false negative at another lab before that. You can Google "Tom Grier Lyme testing" to read a former sufferer and scientist explain the tests and how they are misunderstood and misinterpreted.
Like MS, everybody's Lyme story is unique. I, too, had low grade Lyme for nearly five years before chronic stress wore me down and chronic symptoms started. Even then, my progression was slow and mysterious for a year. I had severe hormone swings,hemorrhagic ovarian cysts, fatigue, tinnitus, light sensitivity, and then shortness of breath that got so bad I was diagnosed with asthma and put on steroids and immune suppressants. Then, I started a steep downhill slide for 3-4 months before I got my pathetic self to a LLMD.
That initial set of symptoms definitely does not sound like a typical Lyme Disease, but my downhill slide symptoms do. I also had tingling, tremor (in my right/dominant hand), shakiness, a blurry spot in my right eye, and overall vision deterioration to the point that I was sure I needed new prescriptions (I figured it was just aging), loss of appetite, weight loss, digestive problems, stomach pain, liver/gallbladder pain (tests were "normal"), and rib pain. I went eight months not being able to wear a bra, which is not a good thing for a middle aged woman!
Lyme likes tissues and can infect nearly any organ. It likes nerves, the brain, connective tissue, and joint fluid, the latter two being the low oxygen environments that it prefers. Any one person's symptoms depend on where the spirochetes decided to hang out in your body. Sometimes, they pack up and move someplace else, and a symptom goes away, followed by a new symptom.
There is definitely Lyme in NC. I know someone who moved from NC to my area a number of years ago, and she had a dog who limped, had swollen joints and seemed to be in a lot of pain. "She has arthritis." the woman said. The dog looked miserable to me. In hindsight now, I know the poor thing had Lyme and it went undiagnosed both here and in NC. The disease is terribly under reported, so there is probably more there than anyone realizes.
Check out Burrascano's symptom checklist. When I saw it, I realized some things I had attributed to aging were actually symptoms.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
And yes, get tested for Lyme. But educate yourself about testing. IGeneX is the best. I might have been diagnosed sooner if I hadn't tested false negative at another lab before that. You can Google "Tom Grier Lyme testing" to read a former sufferer and scientist explain the tests and how they are misunderstood and misinterpreted.
PPS -- you can also search a term such as
Memphis LLMD
or whatever city/cities or regions you can get to and see what pops up on the internet. There are lots of patient websites that will have messages that may be useful.
You can do the same here, just make a new post like "Seeking LLMD near Cleveland" or wherever.
And not to bring you down, but sometimes the first effort at seeing an LLMD is a bust because there's just no chemistry there or the doc is kind of odd or has odd ideas. There is no specific standard that an LLMD trains to or adheres to, because Lyme is on the frontiers of medicine, so keep your antennae up, and bail if you don't things feel right somehow.
You can come here and tell us what happens at your first appointment and we can give you our patient's-eye-view of what we would think if our own appointments went that way. We're not medically trained (at least I'm not), but we sure do have opinions about how we would want our docs to approach things.
Memphis LLMD
or whatever city/cities or regions you can get to and see what pops up on the internet. There are lots of patient websites that will have messages that may be useful.
You can do the same here, just make a new post like "Seeking LLMD near Cleveland" or wherever.
And not to bring you down, but sometimes the first effort at seeing an LLMD is a bust because there's just no chemistry there or the doc is kind of odd or has odd ideas. There is no specific standard that an LLMD trains to or adheres to, because Lyme is on the frontiers of medicine, so keep your antennae up, and bail if you don't things feel right somehow.
You can come here and tell us what happens at your first appointment and we can give you our patient's-eye-view of what we would think if our own appointments went that way. We're not medically trained (at least I'm not), but we sure do have opinions about how we would want our docs to approach things.
PS -- on second thought, you might want to get copies of the old tests ... the previous doc should not charge you for the copies since you OWN the results (you paid for them!), and it beats having the LLMD run the tests again if it's not necessary. Docs don't ever seem to explain that old tests are valuable as longitudinal data (through time), but they are. You dont' need to tell the old doc you are seeing a new doc, because they sometimes get huffy (esp if you are seeing an LLMD), and you might need to go back to the old doc later for something normal like a sprained ankle etc.
Greetings --
I agree with mojo and wonko -- finding a Lyme specialist for a work up is exactly what I would do. I think you are on the right track. None of us is medically trained here, but we've been through the Lyme mill, so we have an idea of what you're dealing with.
If you're up for reading, the ILADS [dot] org website has a lot of information, including Dr Burrascano's treatment guidelines. I don't know if I would have been able to read them and make sense of it all when I was really ill, so don't stress if you can't plow through them. They will make more sense later as your mind clears a bit.
"Cure Unknown" is an excellent book, but I wouldn't have been able to get through it until I was well into treatment: my brain couldn't have absorbed it. The film "Under Our Skin" is more doable if your fatigue is heavy and you can't think straight like I couldn't.
As said above, ILADS has a referral list of LLMDs -- LLMD is patient shorthand for 'Lyme Literate MD', meaning a doc who understand Lyme, and not an official term or degree or designation or diploma. The docs who sign up with the ILADS referral site are not, to my knowledge, vetted in any way, and I've seen occasional comments by patients that the doc they were referred to was ... odd. It's because Lyme knowledge is still developing, and there is no one fixed way to diagnose and treat, and if the tick that bit you also had other infections (such as babesiosis, bartonella, and a few others), the testing and the symptoms will be skewed. Therefore it takes a really wise doc to pick up the clues, and sometimes an LLMD just isn't that wise, or just doesn't see what another doc might. It's the Wild West of medicine, so if you don't get a good 'hit' from the first LLMD you see, try another. Doesn't happen often, but when I hear about docs who insist on you buying their personal brand of vitamins etc., I start to wonder.
The email to request a referral from ILADS is:
contact [at] ILADS [dot] org
and tell them where you are (like near what big city, perhaps) so they can send you some names. If the first one doesn't work for some reason, get another name from ILADS. We don't post names of docs in the open here, because of harrassment of the LLMDs by local medical boards in some states, but you could also tell us where you are and see if anyone has suggestions they can send you in a private message.
Like wonko and mojo say, it may be that many of us have a low level Lyme+ infection for years, and then when there's a trauma (surgery, accident) or other illness of life upheaval, the immune system functioning that kept things under wraps (for the most part) just loses it, and that's when it all hits you. I think that happened to me. I had little annoying symptoms for a couple of years, then got suddenly very ill on/after a trip back East, and it all went down hill from there -- very fast.
Do you have copies of all your tests etc. so far? If you do, put them in a binder and take them with you to see the LLMD -- they can sometimes see things in the tests that the other docs couldn't. If you don't have copies, no big deal, but start keeping copies of all tests done going forward now -- Lyme being a tricky beast, it sometimes takes a while to tease out what exactly is going on with co-infections, and having old tests to look back on can be very useful. That, and Lyme can do miserable things to memory, so having all the data in hand is a good idea.
You ask if it's worth asking your current doc to test for Lyme. I would say: maybe not. The problem is that nonLLMDs don't know how to read the tests, because they don't believe in Lyme, and because the tests are lousy. Tests for Lyme are supposed to be clues, not answers, but nonLLMDs don't know that or don't heed it. And even if your current doc ran a test that came back positive, chances are s/he wouldn't have thought or known to test for co-infections (other diseases the same ticks often carry, which diseases usually need separate meds from Lyme), and if the Lyme test DOES come back positive, a nonLLMD would like give you a few weeks of doxycycline and pronounce you cured, when an LLMD would know better.
In your situation, the first thing I would do is find an LLMD. Once you have that underway, you can read and watch Under Our Skin if you have the energy and focus to do so, but those are optional. I know when I was really ill before diagnosis and treatment, I had a hard time finding my way to the grocery store and home again, never mind actually think a coherent thought. It will get better, just take it easy on yourself: your body is fighting hard, so be kind to it. Eat well, sleep plenty, take care of yourself.
Before you go to the LLMD appointment, I would suggest you spend some time making brief notes of the various symptoms and effects you have been experiencing, and take the notes with you. My memory was so spotty that I would remember something on Tuesday that I had totally forgot on Monday. Give yourself some time to get the paperwork together, because getting to the doc's office and blanking out doesn't help, so the notes are important.
One last point: Lyme bacteria use up magnesium (Mg) in their reproductive process, so it's common to have low Mg levels when you have Lyme. The effects of that are many, including twitching, aching and confusion. You might want to try Mg supplements -- they helped me a LOT. Any variety ending in "-ate" is supposed to be easily absorbed, like Mg malate, or orotate, or aspartate, or citrate. I take a kind that has three of those in it, and it works really well for me. Mg is already low in the American diet, so I read, so supplementing may be very helpful. Just be sure to tell the LLMD you are taking Mg, so s/he can take that into account.
Whew. Sorry for the long data dump. Let us know if we can help further, and DO let us know what you do and how it goes -- hang in there -- we're rooting for you!
I agree with mojo and wonko -- finding a Lyme specialist for a work up is exactly what I would do. I think you are on the right track. None of us is medically trained here, but we've been through the Lyme mill, so we have an idea of what you're dealing with.
If you're up for reading, the ILADS [dot] org website has a lot of information, including Dr Burrascano's treatment guidelines. I don't know if I would have been able to read them and make sense of it all when I was really ill, so don't stress if you can't plow through them. They will make more sense later as your mind clears a bit.
"Cure Unknown" is an excellent book, but I wouldn't have been able to get through it until I was well into treatment: my brain couldn't have absorbed it. The film "Under Our Skin" is more doable if your fatigue is heavy and you can't think straight like I couldn't.
As said above, ILADS has a referral list of LLMDs -- LLMD is patient shorthand for 'Lyme Literate MD', meaning a doc who understand Lyme, and not an official term or degree or designation or diploma. The docs who sign up with the ILADS referral site are not, to my knowledge, vetted in any way, and I've seen occasional comments by patients that the doc they were referred to was ... odd. It's because Lyme knowledge is still developing, and there is no one fixed way to diagnose and treat, and if the tick that bit you also had other infections (such as babesiosis, bartonella, and a few others), the testing and the symptoms will be skewed. Therefore it takes a really wise doc to pick up the clues, and sometimes an LLMD just isn't that wise, or just doesn't see what another doc might. It's the Wild West of medicine, so if you don't get a good 'hit' from the first LLMD you see, try another. Doesn't happen often, but when I hear about docs who insist on you buying their personal brand of vitamins etc., I start to wonder.
The email to request a referral from ILADS is:
contact [at] ILADS [dot] org
and tell them where you are (like near what big city, perhaps) so they can send you some names. If the first one doesn't work for some reason, get another name from ILADS. We don't post names of docs in the open here, because of harrassment of the LLMDs by local medical boards in some states, but you could also tell us where you are and see if anyone has suggestions they can send you in a private message.
Like wonko and mojo say, it may be that many of us have a low level Lyme+ infection for years, and then when there's a trauma (surgery, accident) or other illness of life upheaval, the immune system functioning that kept things under wraps (for the most part) just loses it, and that's when it all hits you. I think that happened to me. I had little annoying symptoms for a couple of years, then got suddenly very ill on/after a trip back East, and it all went down hill from there -- very fast.
Do you have copies of all your tests etc. so far? If you do, put them in a binder and take them with you to see the LLMD -- they can sometimes see things in the tests that the other docs couldn't. If you don't have copies, no big deal, but start keeping copies of all tests done going forward now -- Lyme being a tricky beast, it sometimes takes a while to tease out what exactly is going on with co-infections, and having old tests to look back on can be very useful. That, and Lyme can do miserable things to memory, so having all the data in hand is a good idea.
You ask if it's worth asking your current doc to test for Lyme. I would say: maybe not. The problem is that nonLLMDs don't know how to read the tests, because they don't believe in Lyme, and because the tests are lousy. Tests for Lyme are supposed to be clues, not answers, but nonLLMDs don't know that or don't heed it. And even if your current doc ran a test that came back positive, chances are s/he wouldn't have thought or known to test for co-infections (other diseases the same ticks often carry, which diseases usually need separate meds from Lyme), and if the Lyme test DOES come back positive, a nonLLMD would like give you a few weeks of doxycycline and pronounce you cured, when an LLMD would know better.
In your situation, the first thing I would do is find an LLMD. Once you have that underway, you can read and watch Under Our Skin if you have the energy and focus to do so, but those are optional. I know when I was really ill before diagnosis and treatment, I had a hard time finding my way to the grocery store and home again, never mind actually think a coherent thought. It will get better, just take it easy on yourself: your body is fighting hard, so be kind to it. Eat well, sleep plenty, take care of yourself.
Before you go to the LLMD appointment, I would suggest you spend some time making brief notes of the various symptoms and effects you have been experiencing, and take the notes with you. My memory was so spotty that I would remember something on Tuesday that I had totally forgot on Monday. Give yourself some time to get the paperwork together, because getting to the doc's office and blanking out doesn't help, so the notes are important.
One last point: Lyme bacteria use up magnesium (Mg) in their reproductive process, so it's common to have low Mg levels when you have Lyme. The effects of that are many, including twitching, aching and confusion. You might want to try Mg supplements -- they helped me a LOT. Any variety ending in "-ate" is supposed to be easily absorbed, like Mg malate, or orotate, or aspartate, or citrate. I take a kind that has three of those in it, and it works really well for me. Mg is already low in the American diet, so I read, so supplementing may be very helpful. Just be sure to tell the LLMD you are taking Mg, so s/he can take that into account.
Whew. Sorry for the long data dump. Let us know if we can help further, and DO let us know what you do and how it goes -- hang in there -- we're rooting for you!
I was bit 20 years ago and was sick but it wasn't until a very emotional point in my life came which caused the infection to rear its ugly head all the way.
At a point when you are most vulnerable, you then have to deal with this illness too. Ugh!
Wonko is right, because Lyme is so different with everyone, the more you know, the better off you will be.
At a point when you are most vulnerable, you then have to deal with this illness too. Ugh!
Wonko is right, because Lyme is so different with everyone, the more you know, the better off you will be.
I echo mojogal to visit the ILADS site.
The way you tell your story, do you feel that the surgery triggered your symptoms? Some Lyme doctors believe that in some cases, people can have a smoldering infection that can come to the surface due to things like trauma, stress, etc. That is sort of what happened to me: I had some very minor symptoms for years, things I would never even connect. But then after a very stressful time in my life my illness came to a head.
In addition to the ILADS site you should try to get a copy of "Cure Unknown" by P. Weintraub. It is a dense read but full of history and personal experiences. There is also a Lyme disease documentary that you may want to watch called "under our skin." It is available through a lot of streaming websites.
With Lyme, no two cases are alike. Lots of people don't recall a tick bite and lots do not get the classic "bull's eye" rash. It is very important to rule out other possible causes. But if you're at the end of the line with mainstream medicine, then you may want to pursue an LLMD as suggested by mojogal.
Sorry to hear that you have so much on your plate and I commend you for bravely looking into other possible causes. Before getting sick myself I could never imagine that in many cases the burden is on the patient to get to the bottom of a difficult case.
The way you tell your story, do you feel that the surgery triggered your symptoms? Some Lyme doctors believe that in some cases, people can have a smoldering infection that can come to the surface due to things like trauma, stress, etc. That is sort of what happened to me: I had some very minor symptoms for years, things I would never even connect. But then after a very stressful time in my life my illness came to a head.
In addition to the ILADS site you should try to get a copy of "Cure Unknown" by P. Weintraub. It is a dense read but full of history and personal experiences. There is also a Lyme disease documentary that you may want to watch called "under our skin." It is available through a lot of streaming websites.
With Lyme, no two cases are alike. Lots of people don't recall a tick bite and lots do not get the classic "bull's eye" rash. It is very important to rule out other possible causes. But if you're at the end of the line with mainstream medicine, then you may want to pursue an LLMD as suggested by mojogal.
Sorry to hear that you have so much on your plate and I commend you for bravely looking into other possible causes. Before getting sick myself I could never imagine that in many cases the burden is on the patient to get to the bottom of a difficult case.
Hi, I am not medically trained but Lyme is all over. It is very under reported because the majority of mainstream doctors don't recognize it. Myself and many others have been misdiagnosed by many doctors and have suffered through painful unnecessary tests. You could have Lyme.
I would go to ILADS dot org and read up. If your mainstream doc were to take tests they would be useless unless they used IgeneX labs. It is the only lab in the country that gives you accurate test results. When you go on that site you can email them and ask them for an LLMD - Lyme Literate Doctor in your area. This is the only way to be completely sure if you have Lyme or one of its co-infections. Doing this will save you from years of pain and suffering, going from one doctor to the next and not knowing.
I wish you luck.
I would go to ILADS dot org and read up. If your mainstream doc were to take tests they would be useless unless they used IgeneX labs. It is the only lab in the country that gives you accurate test results. When you go on that site you can email them and ask them for an LLMD - Lyme Literate Doctor in your area. This is the only way to be completely sure if you have Lyme or one of its co-infections. Doing this will save you from years of pain and suffering, going from one doctor to the next and not knowing.
I wish you luck.
Dang it meant to also say during surgery I was given a lot of anesthesia and pain meds I didnt have a tube down my thraot. I also have a tingling feeling in my right forearm and hand. Sorry for the contiued post lol..
Meant to add my MRI/MRA was normal and they ruled out MS brain tumor Parkinson disease etc...I have no weakness but this shaking worries me when I lift things etc..
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