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?
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.
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