Aa
Why won't anybody listen to me?
I'm not saying I definitely have Lyme disease. I just know I have a lot of the symptoms, and I've been tested for a lot of other things that have come back negative.
I know there's something wrong with me, but nobody cares. My head feels like there's an open wound inside of it if hurts so bad. I get dizzy all of the time. My hands are always shaking. I pee sometimes 7 times in a single hour. I can't think straight at all. The other day, I went grocery shopping, came home, and then like an hour later, I realized that I left the groceries in my trunk because I just completely forgot to bring them inside. The same day, I went to the bathroom and walked out holding the used toilet paper (gross I know) because I forgot to put it in the toilet. Just talking to people is a struggle because I have trouble remembering words. Stuff like that...my brain is all messed up. I'm going to wind up getting fired from work b/c I make so many stupid mistakes.
I've been to so many different doctors: neurologist, cardiologist, internist, general practitioners, psychologists, an ENT, acupuncturist, reiki practitioner, you name it. They don't listen to me. They sit with me for like 8 minutes, act nonchalant like I just told them my only symptom was sneezing or something, and then send me home. Everyone around me thinks I'm crazy since all of these doctors have said there's nothing wrong with me. My family resents me and is really mean to me. I asked them to stop turning the air conditioner up so high because being cold makes me feel so awful, but they just told me to stop making stuff up. I told my dad I don't want to pick my brother up from school because I'm afraid of driving since I can't focus, and he told me to stop being selfish. I don't really have friends anymore because they all think I'm full of BS if I say I don't feel good so I'm going to stay home instead of go to dinner with them or what have you. I'm just completely on my own. I tried going to a psychologist (2 actually) to have somebody to talk to, and even they treated me like I was making stuff up. The second guy straight up told me I had a somatoform disorder and put that in my report and everything. I didn't want his input on the cause of my symptoms. I just wanted somebody to talk to.
I can't do this. I'm so scared and alone. I can't go to a Lyme specialist because I don't have the money nor the means to get to one, not that I know I have Lyme anyway. What am I doing wrong that none of the people I am seeing take me seriously?
I know there's something wrong with me, but nobody cares. My head feels like there's an open wound inside of it if hurts so bad. I get dizzy all of the time. My hands are always shaking. I pee sometimes 7 times in a single hour. I can't think straight at all. The other day, I went grocery shopping, came home, and then like an hour later, I realized that I left the groceries in my trunk because I just completely forgot to bring them inside. The same day, I went to the bathroom and walked out holding the used toilet paper (gross I know) because I forgot to put it in the toilet. Just talking to people is a struggle because I have trouble remembering words. Stuff like that...my brain is all messed up. I'm going to wind up getting fired from work b/c I make so many stupid mistakes.
I've been to so many different doctors: neurologist, cardiologist, internist, general practitioners, psychologists, an ENT, acupuncturist, reiki practitioner, you name it. They don't listen to me. They sit with me for like 8 minutes, act nonchalant like I just told them my only symptom was sneezing or something, and then send me home. Everyone around me thinks I'm crazy since all of these doctors have said there's nothing wrong with me. My family resents me and is really mean to me. I asked them to stop turning the air conditioner up so high because being cold makes me feel so awful, but they just told me to stop making stuff up. I told my dad I don't want to pick my brother up from school because I'm afraid of driving since I can't focus, and he told me to stop being selfish. I don't really have friends anymore because they all think I'm full of BS if I say I don't feel good so I'm going to stay home instead of go to dinner with them or what have you. I'm just completely on my own. I tried going to a psychologist (2 actually) to have somebody to talk to, and even they treated me like I was making stuff up. The second guy straight up told me I had a somatoform disorder and put that in my report and everything. I didn't want his input on the cause of my symptoms. I just wanted somebody to talk to.
I can't do this. I'm so scared and alone. I can't go to a Lyme specialist because I don't have the money nor the means to get to one, not that I know I have Lyme anyway. What am I doing wrong that none of the people I am seeing take me seriously?
I have a good idea. I was sitting here trying to think back to what I felt like when I was 24 years old and how would I feel if I was living with a parent who didn't understand that I was feeling so poorly and looking for answers to a medical problem... Then I came up with an idea that might help you.
There is a website called www.**********.com and it is for young people (anyone under the age of 40) who is suffering from a chronic illness and Chronic Lyme patients are included. Maybe you could sign up on that page and start talking to some of those younger people to see how they are handling the social aspects of their illnesses? See how they deal with living at home or how they deal with parents who don't understand them? It is a great site... I wish I could join it!!
It is not "pathetic" that you are still living at home with your father. I am 41 years old and I had to move back in with my 65 year old mother so she could take care of me because I am so sick! It happens in life my dear. Don't be so hard on yourself. Remember that the bottom line is to take care of whatever is making you sick and get back to enjoying the long life you have in front of you ok?
So, check out that website and see if you can straighten out the situation at home. This disease is much easier to fight if you have a team in your corner supporting you. Don't forget that we are here to lean on and we have already traveled the road you are likely headed down. Even if you can't get the support that you are looking for from your family, you are most definitely NOT alone. Take care~
There is a website called www.**********.com and it is for young people (anyone under the age of 40) who is suffering from a chronic illness and Chronic Lyme patients are included. Maybe you could sign up on that page and start talking to some of those younger people to see how they are handling the social aspects of their illnesses? See how they deal with living at home or how they deal with parents who don't understand them? It is a great site... I wish I could join it!!
It is not "pathetic" that you are still living at home with your father. I am 41 years old and I had to move back in with my 65 year old mother so she could take care of me because I am so sick! It happens in life my dear. Don't be so hard on yourself. Remember that the bottom line is to take care of whatever is making you sick and get back to enjoying the long life you have in front of you ok?
So, check out that website and see if you can straighten out the situation at home. This disease is much easier to fight if you have a team in your corner supporting you. Don't forget that we are here to lean on and we have already traveled the road you are likely headed down. Even if you can't get the support that you are looking for from your family, you are most definitely NOT alone. Take care~
I'm not trying to be rude. I'm just really depressed and frustrated and don't have it in me to say more. This conversation is just reminding me of how alone I am, how little I matter to the people who are physically around me, and how little control over my situation because I'm stuck in my dad's house where what he says goes. I don't expect anyone to understand but me because I can't even figure out the words to say what I'm trying to say right now.
Let's just let this thread drop. :)
Let's just let this thread drop. :)
I don't know if you're still around, but I hope you see this. I just saw another article on Borrelia Miyamotoi, and I thought perhaps you could take this to whichever doctor you've seen that is most open to possibilities and show it to him.
It talks about Borrelia Miyamotoi, which causes human illness with symptoms very similar to Lyme Disease. Unfortunately, patients nearly always test negative on Lyme Disease antibody tests, as those tests are looking for Borrelia Burgdorferi. Perhaps a doc would be willing to give you some anti-Lyme antibiotics to see if you start feeling better. Or perhaps that doctor would be willing to give you a new referral to a doc who's willing to step into the unknown on this.
It's worth a try...
http://now.tufts.edu/articles/new-tick-borne-disease-found
It talks about Borrelia Miyamotoi, which causes human illness with symptoms very similar to Lyme Disease. Unfortunately, patients nearly always test negative on Lyme Disease antibody tests, as those tests are looking for Borrelia Burgdorferi. Perhaps a doc would be willing to give you some anti-Lyme antibiotics to see if you start feeling better. Or perhaps that doctor would be willing to give you a new referral to a doc who's willing to step into the unknown on this.
It's worth a try...
http://now.tufts.edu/articles/new-tick-borne-disease-found
i was called somatically delusional by my last doc..
couldn't help me didn't dxed me.. so i must be the nut..!!
still full of joint and muscle pain.. started in summer of 2011!!!
i feel for all of you..
couldn't help me didn't dxed me.. so i must be the nut..!!
still full of joint and muscle pain.. started in summer of 2011!!!
i feel for all of you..
I'm sorry you're struggling so much. I'm sure it must feel overwhelming at times.
It sounds like you've had a good set of responses, so I'll just focus on one issues: you're not convinced you have Lyme, yet.
While IGeneX called your Western Blot result a negative, you still had a Lyme specific band. Band 18 is very Lyme specific and some LLMDs will diagnose on that band alone, along with symptoms and a history.
You have history, you have Lyme symptoms, you have no other alternatives despite seeing many other doctors (including specialists), and you have a Lyme specific antibody showing up in your blood. Patients sick for years are most likely to have too few antibodies to show a positive, even at IGeneX. Some show positive after taking some anti-Lyme antibiotics. Everything you describe is consistent with late stage Lyme Disease!
I know we're not doctors, so it's hard to take our word for it. But I encourage you to believe the evidence you alreay have that you do indeed have late stage Lyme Disease. It sounds like you are a strong person in that you keep looking on your own behalf, in spite of a lack of support around you from family or doctors. That's a hard thing to do, so it says a lot about you.
Lyme that causes cognitive issues nearly always causes psychological issues, too, especially anxiety, self doubt, and mental confusion. It gets difficult to focus and make decisions, both of which can cause physical distress like nausea. I felt like I was losing track of who I was. It's hard to describe, but other Lyme patients know exactly what I mean.
I know I had a really hard time making the decision to get tested at IGeneX and to commit to a costly consultation. I can relate to your struggle given unsupporting doctors and less than clear proof of anything.
But I can tell you now that those decisions saved my life. I encourage you to come to your own conclusion, knowing that the doctors you've seen so far aren't understanding you. They're mystified as they simply don't know that Lyme can do what it's doing to you, not to mention that they're told not to diagnose it in Florida!
I encourage you to believe that you have Lyme. Then decide what you want to do next.
It sounds like you've had a good set of responses, so I'll just focus on one issues: you're not convinced you have Lyme, yet.
While IGeneX called your Western Blot result a negative, you still had a Lyme specific band. Band 18 is very Lyme specific and some LLMDs will diagnose on that band alone, along with symptoms and a history.
You have history, you have Lyme symptoms, you have no other alternatives despite seeing many other doctors (including specialists), and you have a Lyme specific antibody showing up in your blood. Patients sick for years are most likely to have too few antibodies to show a positive, even at IGeneX. Some show positive after taking some anti-Lyme antibiotics. Everything you describe is consistent with late stage Lyme Disease!
I know we're not doctors, so it's hard to take our word for it. But I encourage you to believe the evidence you alreay have that you do indeed have late stage Lyme Disease. It sounds like you are a strong person in that you keep looking on your own behalf, in spite of a lack of support around you from family or doctors. That's a hard thing to do, so it says a lot about you.
Lyme that causes cognitive issues nearly always causes psychological issues, too, especially anxiety, self doubt, and mental confusion. It gets difficult to focus and make decisions, both of which can cause physical distress like nausea. I felt like I was losing track of who I was. It's hard to describe, but other Lyme patients know exactly what I mean.
I know I had a really hard time making the decision to get tested at IGeneX and to commit to a costly consultation. I can relate to your struggle given unsupporting doctors and less than clear proof of anything.
But I can tell you now that those decisions saved my life. I encourage you to come to your own conclusion, knowing that the doctors you've seen so far aren't understanding you. They're mystified as they simply don't know that Lyme can do what it's doing to you, not to mention that they're told not to diagnose it in Florida!
I encourage you to believe that you have Lyme. Then decide what you want to do next.
Sometimes you have to walk away for a little while and that's ok. Heck, I got overwhelmed when I was searching for three years for my diagnosis so I took a break for a few months and didn't even mutter the dang word LYME! Hopefully, even if you have decided to stop posting on this page for now, you may decide to either keep reading it or at least after taking a little break you might look back to see if anyone has continued to check up on you. We won't forget that you are out there and we will still be here when you are ready to pick up the reins and start fighting again. Take a rest from all the research, catch your breath, lick your wounds, remember that there are other things in your life besides being sick and come back to us when you need our help again.
Like Jackie was saying when she gave you those references about the bands on your lab results...that is not a negative Western Blot test according to the standards of any reputable LLMD and you would not be laughed out of their office. The reason it says "negative" on the test paper is because it has to say that per the CDC requirements right now (which we all know are completely irrational). I had even less positive bands than you do and I was immediately treated for Chronic Lyme. You have positive bands that would only turn positive if you had been exposed to Lyme. You can stop searching my dear. Take your break, think about how you want to handle your future, get some rest and come back to us if you need some support ok? We will be here for you.
Like Jackie was saying when she gave you those references about the bands on your lab results...that is not a negative Western Blot test according to the standards of any reputable LLMD and you would not be laughed out of their office. The reason it says "negative" on the test paper is because it has to say that per the CDC requirements right now (which we all know are completely irrational). I had even less positive bands than you do and I was immediately treated for Chronic Lyme. You have positive bands that would only turn positive if you had been exposed to Lyme. You can stop searching my dear. Take your break, think about how you want to handle your future, get some rest and come back to us if you need some support ok? We will be here for you.
I can understand your frustration---- but please don't disappear from a site like this where the members are all trying to help you in their own way.
It seems the sticking point is---- you can't find a 'good' llmd that's close to you. (There are a lot of llmds that say they are----- but have some pretty strange ways to help you.)
Perhaps some members here have sent you a private message with the name of an LLMD that is close to you?
Then, another big sticking point---- $$$ Ah, yes. Not one to be ignored at all. But there are some ways to get help with that, once you have an LLMD.
Sorry to be seeming to bug you when you've decided to leave this board but it sounds as if you need a place to vent---- and this is the place. If we all seem to be offering 'too much help' that is overwhelming us----- just tell us. Jackie will always be here with her words of comfort and so will others.
It seems the sticking point is---- you can't find a 'good' llmd that's close to you. (There are a lot of llmds that say they are----- but have some pretty strange ways to help you.)
Perhaps some members here have sent you a private message with the name of an LLMD that is close to you?
Then, another big sticking point---- $$$ Ah, yes. Not one to be ignored at all. But there are some ways to get help with that, once you have an LLMD.
Sorry to be seeming to bug you when you've decided to leave this board but it sounds as if you need a place to vent---- and this is the place. If we all seem to be offering 'too much help' that is overwhelming us----- just tell us. Jackie will always be here with her words of comfort and so will others.
Just wondering, did you actually see and get copies of your bloodwork results or did you take the word of your dr that its negative?
Anyway, I don't think I'm going to post here anymore. I mostly just wanted to know if anyone had any secrets to getting doctors to listen to me since I know Lyme patients have dealt with doctors who don't listen galore. Seems everything's going to keep going back to going to a Lyme doctor, and I can't do that right now, so thanks again everyone! :)
(and yes I know Better said there is a good Lyme doc in Jacksonville, but while Jacksonville is the closest big town to me, it's still a 2-hour drive)
I didn't go to a Lyme specialist. There aren't any in my area. I bugged my neurologist, who I no longer see, until he let me get the tests done, but he just handed me the results and said he didn't want anything to do with them because he's 100% certain I don't have Lyme disease. My doctor didn't say I was negative. IGeneX did (It was written on the results that I was negative by their criteria)
A few responses to your post above:
"I guess my thing about going to a Lyme doctor is, what if I don't have Lyme?"
If you don't have Lyme, a Lyme doc will tell you that. Then on to the next possibility.
"On my IGM, I had a weak positive on band 18 (one +) and then two ++s on band 41 (my understanding is pretty much everyone has a positive 41, though?). Then on the IGG, I had ++ on band 41 and one + each on bands 45 and 58."
Western blot results:
18 = "highly specific to Lyme -- many LLMDs say if this band alone is positive, you have Lyme"
41 = all spirochetes (spiral shaped bacteria) react on this band, so it could be Lyme, or it could be something else
45 = same as 41
58 = unknown but may be a Lyme bacterium protein
And your LLMD said you are clean? Are you sure this doc is a Lyme doc?
This is not a negative test. It is perhaps not a strong positive test, but it is not negative.
I don't recall if you have had a Lyme PCR test -- instead of looking for antibodies your immune system makes against Lyme (as the Western blot test above does), the PCR test looks for 'direct evidence': the DNA of Lyme bacteria in your blood.
The immune system is an inconstant indicator of Lyme: sometimes your immune system just gives up, figuring it's killed all the bacteria, but Lyme doesn't play by those rules. My Western blot came back slightly positive too, and my Lyme doc said he was surprised there was ANY positive reaction because of how long I had been ill. My doc also ran the PCR test, and it was positive too.
How are you certain your doc is a Lyme specialist? It's hard to tell sometimes, because any doc, no matter how ignorant of Lyme, can claim to be one. I don't recall now how you found your doc, but you might try another one.
"I guess my thing about going to a Lyme doctor is, what if I don't have Lyme?"
If you don't have Lyme, a Lyme doc will tell you that. Then on to the next possibility.
"On my IGM, I had a weak positive on band 18 (one +) and then two ++s on band 41 (my understanding is pretty much everyone has a positive 41, though?). Then on the IGG, I had ++ on band 41 and one + each on bands 45 and 58."
Western blot results:
18 = "highly specific to Lyme -- many LLMDs say if this band alone is positive, you have Lyme"
41 = all spirochetes (spiral shaped bacteria) react on this band, so it could be Lyme, or it could be something else
45 = same as 41
58 = unknown but may be a Lyme bacterium protein
And your LLMD said you are clean? Are you sure this doc is a Lyme doc?
This is not a negative test. It is perhaps not a strong positive test, but it is not negative.
I don't recall if you have had a Lyme PCR test -- instead of looking for antibodies your immune system makes against Lyme (as the Western blot test above does), the PCR test looks for 'direct evidence': the DNA of Lyme bacteria in your blood.
The immune system is an inconstant indicator of Lyme: sometimes your immune system just gives up, figuring it's killed all the bacteria, but Lyme doesn't play by those rules. My Western blot came back slightly positive too, and my Lyme doc said he was surprised there was ANY positive reaction because of how long I had been ill. My doc also ran the PCR test, and it was positive too.
How are you certain your doc is a Lyme specialist? It's hard to tell sometimes, because any doc, no matter how ignorant of Lyme, can claim to be one. I don't recall now how you found your doc, but you might try another one.
Okay, now that I have a little more time to respond, I guess I'll start by answering Better's questions that I haven't addressed yet. Yes, I had some positive bands on my WB, but not enough to classify me as Lyme positive according to IGeneX. On my IGM, I had a weak positive on band 18 (one +) and then two ++s on band 41 (my understanding is pretty much everyone has a positive 41, though?). Then on the IGG, I had ++ on band 41 and one + each on bands 45 and 58. As stated, my CD57 was an 88. I wish I had an understanding of what this actually means. I can't seem to find any information on what the CD57 really measures. I know it measures NK cells, but I don't really know what that's supposed to indicate.
As for my B12 level, I can't seem to find those results right now, but I know the number was in the 300s at first and then jumped into the low 400s when we retested. Apparently that was enough to convince the doctor I didn't need the B12 shots. I do take a B-complex vitamin now (with methylcobalamin), but I've heard stories of people experiencing a much greater improvement in symptoms with the shots and just want to try them since I know that's one thing that truly can't hurt...at least I've heard you can't overdose on B12.
It's frustrating because I go into the doctor's office with that exact attitude that I'm the one paying their salary, and I'm not in the wrong to ask them to do more to help me than nod their heads for a few minutes and then send me home. But then they rush me, talk over me, and talk down to me like I'm crazy and stupid, and I'm just really not that good at asserting myself in that kind of situation. I try, but it doesn't come out right, and they're already half out the door ready to walk over to the next patient while I'm trying to figure out what more it's going to take to get someone who my insurance company is paying hundreds of dollars for that visit to listen to me. They just don't have any idea how much this whole mess is affecting me when I'm not in their office and trying to go about my day to day life. I don't know how to get them to understand that. They think I'm just some hypochondriac of a 20-something coming into their office whining about nothing. Really tired of not being taken seriously.
I guess my thing about going to a Lyme doctor is, what if I don't have Lyme? Lyme doctors aren't like other doctors--they want thousands of dollars per visit, and that's thousands of dollars that will be essentially thrown away if they tell me I don't have Lyme, which seems likely to me right now since even IGeneX says I don't have it. I'm tired of making a fool out of myself going to great lengths to pursue something I think might actually help only to wind up where I started. It's exhausting. I don't have the energy for it, and my dad wouldn't let me anyway because as I said, he wants me out of his house...he would never let me spend all of that to go to a Lyme doctor when he wants me to be saving up money to move. I don't know. Like I said, I need to wait until I have more money. In the meantime, it would be nice if the doctors I can afford to go see would at least TRY to figure out what's going on.
As for my B12 level, I can't seem to find those results right now, but I know the number was in the 300s at first and then jumped into the low 400s when we retested. Apparently that was enough to convince the doctor I didn't need the B12 shots. I do take a B-complex vitamin now (with methylcobalamin), but I've heard stories of people experiencing a much greater improvement in symptoms with the shots and just want to try them since I know that's one thing that truly can't hurt...at least I've heard you can't overdose on B12.
It's frustrating because I go into the doctor's office with that exact attitude that I'm the one paying their salary, and I'm not in the wrong to ask them to do more to help me than nod their heads for a few minutes and then send me home. But then they rush me, talk over me, and talk down to me like I'm crazy and stupid, and I'm just really not that good at asserting myself in that kind of situation. I try, but it doesn't come out right, and they're already half out the door ready to walk over to the next patient while I'm trying to figure out what more it's going to take to get someone who my insurance company is paying hundreds of dollars for that visit to listen to me. They just don't have any idea how much this whole mess is affecting me when I'm not in their office and trying to go about my day to day life. I don't know how to get them to understand that. They think I'm just some hypochondriac of a 20-something coming into their office whining about nothing. Really tired of not being taken seriously.
I guess my thing about going to a Lyme doctor is, what if I don't have Lyme? Lyme doctors aren't like other doctors--they want thousands of dollars per visit, and that's thousands of dollars that will be essentially thrown away if they tell me I don't have Lyme, which seems likely to me right now since even IGeneX says I don't have it. I'm tired of making a fool out of myself going to great lengths to pursue something I think might actually help only to wind up where I started. It's exhausting. I don't have the energy for it, and my dad wouldn't let me anyway because as I said, he wants me out of his house...he would never let me spend all of that to go to a Lyme doctor when he wants me to be saving up money to move. I don't know. Like I said, I need to wait until I have more money. In the meantime, it would be nice if the doctors I can afford to go see would at least TRY to figure out what's going on.
Hi everyone, I don't have time to respond to all of your messages in depth now (I will later!), but unfortunately, no, I don't really have anyone to come vouch for me that I really am sick. I literally have no one who believes me. Not anyone who lives near me anyway. It's frustrating because I'm not as sick as some people with Lyme and other conditions like MS to where I can't walk or speak or anything. I can do most things...they're just hard for me, which others probably don't even pick up on, and I just do a lot of dumb things like I mentioned, which others probably don't even notice because I'm by myself like 95% of the time. I mostly just lay in my bed and work remotely. I'm not around people very much. And I don't really look sick. I mean, I think I look paler than I used to be, but others don't notice if I do.
My CD57 was 88, so it wasn't that low. I dunno.
Sending you a message in a moment, BetterTickedOffThanTickedOn
My CD57 was 88, so it wasn't that low. I dunno.
Sending you a message in a moment, BetterTickedOffThanTickedOn
Welcome! I'm sure you'll like it here and I know I'll like the fact that you're here. LOL
Straightshooters Are Us.
Straightshooters Are Us.
WONDERFULLY SAID!!
Welcome to MedHelp Lyme -- delighted you are here. Hope you will keep coming back!
Welcome to MedHelp Lyme -- delighted you are here. Hope you will keep coming back!
Continued Part 2
The personal battles don't get any easier I'm afraid. I wish you had more support at home but you will find that everyone with this disease struggles with family or friends that don't support them. There are a lot of blogs on the computer that are really good where you can read about how some really sick Lyme patients cope with the lack of support. Try to remember that your only job right now is to believe in yourself and your mission to get better. You don't have to convince anyone else, even your family. It hurts like hell that they have chosen to "turn a blind eye" and ya know what? When the day comes that they realize how sick you really are you will see a look of guilt on their face that you will never forget. Just forgive and move on. You don't have the time, energy or strength for their issues right now.
Lastly, get focused. You are throwing your money around to a bunch of doctors right now unnecessarily, chasing down each and every symptom when you could save all of that and channel it into determining whether or not you truly do have Lyme. If you believe that you have this disease then get confirmation, commit to that first appointment with the local LLMD for a treatment plan and at least get started on treatment. You don't need to see any more doctors. You mentioned that your CD57 was "borderline" but you didn't say how low it was? If it is anywhere below 100, I am suspicious. If it is near 60, I am convinced. If it is below 50, you are acutely ill.
We have a fantastic association here called NEFLA (Northeast Florida Lyme Association) that has a website NEFLA.org, a Facebook page and they just put up four billboards on the highways around the city for the month of May ~ Lyme Awareness Month. We have support group meetings the third Thursday of every month at 7pm at the United Methodist Church that is open to anyone and the local LLMD is there along with all of the smartest local people who can point you in the right direction for treatment or just to answer all of your questions for free!
If you can somehow get to one of the meetings, you will be surrounded by a room full of people who have all the same symptoms as you, have seen all kinds of doctors who have told them that they are crazy too and you will feel all the love and support that I think you so desperately need right now. I hope this long post has helped you a little bit. It was written from the heart. I have battled the disease for 13 years now and like I said, even though I am disabled now, I was once the person who wore the white coat and gave the medical advice.
Don't ever be afraid to push for what you want. You are the only one who can fight for your health. If you don't like how you are being treated by a certain doctor, fire them and move on to the next one. There are plenty of them who will be willing to take your money. For now, the Lyme community in Jax is here to give you the support that you need to begin your journey down this difficult path to healing. Good luck my dear. I will be thinking of you.
The personal battles don't get any easier I'm afraid. I wish you had more support at home but you will find that everyone with this disease struggles with family or friends that don't support them. There are a lot of blogs on the computer that are really good where you can read about how some really sick Lyme patients cope with the lack of support. Try to remember that your only job right now is to believe in yourself and your mission to get better. You don't have to convince anyone else, even your family. It hurts like hell that they have chosen to "turn a blind eye" and ya know what? When the day comes that they realize how sick you really are you will see a look of guilt on their face that you will never forget. Just forgive and move on. You don't have the time, energy or strength for their issues right now.
Lastly, get focused. You are throwing your money around to a bunch of doctors right now unnecessarily, chasing down each and every symptom when you could save all of that and channel it into determining whether or not you truly do have Lyme. If you believe that you have this disease then get confirmation, commit to that first appointment with the local LLMD for a treatment plan and at least get started on treatment. You don't need to see any more doctors. You mentioned that your CD57 was "borderline" but you didn't say how low it was? If it is anywhere below 100, I am suspicious. If it is near 60, I am convinced. If it is below 50, you are acutely ill.
We have a fantastic association here called NEFLA (Northeast Florida Lyme Association) that has a website NEFLA.org, a Facebook page and they just put up four billboards on the highways around the city for the month of May ~ Lyme Awareness Month. We have support group meetings the third Thursday of every month at 7pm at the United Methodist Church that is open to anyone and the local LLMD is there along with all of the smartest local people who can point you in the right direction for treatment or just to answer all of your questions for free!
If you can somehow get to one of the meetings, you will be surrounded by a room full of people who have all the same symptoms as you, have seen all kinds of doctors who have told them that they are crazy too and you will feel all the love and support that I think you so desperately need right now. I hope this long post has helped you a little bit. It was written from the heart. I have battled the disease for 13 years now and like I said, even though I am disabled now, I was once the person who wore the white coat and gave the medical advice.
Don't ever be afraid to push for what you want. You are the only one who can fight for your health. If you don't like how you are being treated by a certain doctor, fire them and move on to the next one. There are plenty of them who will be willing to take your money. For now, the Lyme community in Jax is here to give you the support that you need to begin your journey down this difficult path to healing. Good luck my dear. I will be thinking of you.
I just finished reading all of the comments here and I really want to help you. I know that you are frustrated, sick and don't quite know where to turn next to best utilize your resources. I have a few questions and suggestions that may help, considering I went through the same things as you and I live in the same city. I'm a "call it like I see it" type of person so please don't take any offense if I come across straightforward ok?
First of all, you keep saying that your Western Blot was "negative" but you never made any reference to whether or not you had ANY positive bands on the test. Did you get a paper copy of your results? A CDC "negative" test literally means nothing when it comes to this disease. Most of us who have been desperately ill with this disease have had our first Western Blot come back as "negative." I only had one positive band on my first test and then after I took antibiotics for six months, I repeated the test and I had six positive bands! You have to remember that the Western Blot is a blood test where the result is reading your body's ability to launch antibodies against the presence of a Borrelia antigen (meaning a Lyme bug was in you at some point and your body tried to defend itself).
However, there are two ways that your body would not see the Lyme bug. The first way is if the bugs have been in you for so long that they have spiraled their way out of your blood vessels and invaded your cells now. The second way is if your immune system is so weak that your body simply can't launch a defense because you are too sick. If you had either one of those situations going on, then you would not have a lot of positive bands show up on the Western Blot and the "official" result would be listed as negative. If you take a look at some of the explanations of Western Blot results you will see that certain bands are more indicative that you have Lyme bugs in you so even if you had one or two of those come back as being positive....I would say that you have Lyme Disease.
Don't get so focused on a "negative" Western Blot. I frequently have my test repeated (just the IgG and IgM, test #188 and #189 at IGeneX, it costs $200 if you order it that way) while I continue my treatment just to see how much of the Lyme is showing up in my blood and how well my immune system is defending me against it. As I kill off more cysts and biofilms, the Lyme spirochetes and toxins increase in the bloodstream so I end up with more positive bands on my Western Blot. If you repeat your test in the future after you start taking some antibiotics, your test will likely change.
Regarding your B12 levels...how low were they? My B12 was critically low at 204 and I have been on weekly shots for years now. The range is usually from about 400-1200 but people should stay at least above 550 or so on a regular basis. If you were in the 200-300 range, I don't know that oral supplements alone will be enough to bring it up sufficiently, It is very common for Lyme patients to be low in B12 and the best supplementation for us is to use methylcobalamin for replacement (not cyanocobalamin). Replacing your B12 will help with energy, peripheral numbness in hands/feet, nerve tingling and memory issues too. I find that B6 helps quite a bit too, so even just taking a good B-complex vitamin would be a good idea as well.
As far as talking to all of these doctors and getting what you want/need from them, it is actually just a matter of changing the way you view them. I can say this because I worked in medicine. I want you to remember one thing...they work for YOU. I don't care if they are wearing the white coat when you walk into that room, or how much school they went to, or how long you had to sit in their dang waiting room to see them...YOU are paying their salary and YOU deserve to be treated like a human being who needs an answer to all of your questions about your health. Do not be afraid of them. Get copies of ALL of your results, your labs, your office notes, read what they wrote about you and make them write addendums to their notes if you do not agree with what they said in your chart. You have to remember that whatever they write will be sent to your insurance company for years to come and it may steer the course of your future through this journey of Lyme Disease so make sure it is done correctly as you walk the path. It just makes it easier in the long run.
I know how hard it is to face all of this when you barely have the energy to raise your own arm. I know because I did it myself. I saw 14 doctors before I started getting answers ~ including two guys at the almighty Mayo Clinic who told me that I was nuts ~ but I kept pushing. Like you, I had four neurologists, I did a balance study looking at that crazy red dot too... man that test was awful! I had five spinal taps, more blood work and scans than I can even explain to you and I searched for 3 years for my diagnosis but I finally got it and started treatment.
Continued in part 2
First of all, you keep saying that your Western Blot was "negative" but you never made any reference to whether or not you had ANY positive bands on the test. Did you get a paper copy of your results? A CDC "negative" test literally means nothing when it comes to this disease. Most of us who have been desperately ill with this disease have had our first Western Blot come back as "negative." I only had one positive band on my first test and then after I took antibiotics for six months, I repeated the test and I had six positive bands! You have to remember that the Western Blot is a blood test where the result is reading your body's ability to launch antibodies against the presence of a Borrelia antigen (meaning a Lyme bug was in you at some point and your body tried to defend itself).
However, there are two ways that your body would not see the Lyme bug. The first way is if the bugs have been in you for so long that they have spiraled their way out of your blood vessels and invaded your cells now. The second way is if your immune system is so weak that your body simply can't launch a defense because you are too sick. If you had either one of those situations going on, then you would not have a lot of positive bands show up on the Western Blot and the "official" result would be listed as negative. If you take a look at some of the explanations of Western Blot results you will see that certain bands are more indicative that you have Lyme bugs in you so even if you had one or two of those come back as being positive....I would say that you have Lyme Disease.
Don't get so focused on a "negative" Western Blot. I frequently have my test repeated (just the IgG and IgM, test #188 and #189 at IGeneX, it costs $200 if you order it that way) while I continue my treatment just to see how much of the Lyme is showing up in my blood and how well my immune system is defending me against it. As I kill off more cysts and biofilms, the Lyme spirochetes and toxins increase in the bloodstream so I end up with more positive bands on my Western Blot. If you repeat your test in the future after you start taking some antibiotics, your test will likely change.
Regarding your B12 levels...how low were they? My B12 was critically low at 204 and I have been on weekly shots for years now. The range is usually from about 400-1200 but people should stay at least above 550 or so on a regular basis. If you were in the 200-300 range, I don't know that oral supplements alone will be enough to bring it up sufficiently, It is very common for Lyme patients to be low in B12 and the best supplementation for us is to use methylcobalamin for replacement (not cyanocobalamin). Replacing your B12 will help with energy, peripheral numbness in hands/feet, nerve tingling and memory issues too. I find that B6 helps quite a bit too, so even just taking a good B-complex vitamin would be a good idea as well.
As far as talking to all of these doctors and getting what you want/need from them, it is actually just a matter of changing the way you view them. I can say this because I worked in medicine. I want you to remember one thing...they work for YOU. I don't care if they are wearing the white coat when you walk into that room, or how much school they went to, or how long you had to sit in their dang waiting room to see them...YOU are paying their salary and YOU deserve to be treated like a human being who needs an answer to all of your questions about your health. Do not be afraid of them. Get copies of ALL of your results, your labs, your office notes, read what they wrote about you and make them write addendums to their notes if you do not agree with what they said in your chart. You have to remember that whatever they write will be sent to your insurance company for years to come and it may steer the course of your future through this journey of Lyme Disease so make sure it is done correctly as you walk the path. It just makes it easier in the long run.
I know how hard it is to face all of this when you barely have the energy to raise your own arm. I know because I did it myself. I saw 14 doctors before I started getting answers ~ including two guys at the almighty Mayo Clinic who told me that I was nuts ~ but I kept pushing. Like you, I had four neurologists, I did a balance study looking at that crazy red dot too... man that test was awful! I had five spinal taps, more blood work and scans than I can even explain to you and I searched for 3 years for my diagnosis but I finally got it and started treatment.
Continued in part 2
I am a Chronic Lyme patient who lives in Jacksonville, FL. I have great doctors and a solid treatment plan that I have been following for three years now. Do you still need a recommendation for a doctor? I was bitten by my infected tick 13 years ago and have been seriously ill for the past 3 years (started deteriorating in 2005).
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