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?
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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