Aa
Desperate and depressed
Newbie here and wanting to find out some answers. Here are my symptoms for the most part...going to the nuro doc the 13th to confirm i have Lymes Disease. He thinks maybe i do.
confusion, brain swelling (left ventrical), extreme fatigue, fibro and chronic fatigue syndrome was diagnosed, SED rate of 25, negative results on my nuclear brain scan (free of tumors and blockages), low grade fevers, lyme ab igm .96, memory & concentration, pain and last but not least some odd joint swelling in my right ankle. Vitamin B-12 was 426. I have had chronic sinus infections also, also had at least 2 bouts with viral meningitis. My Lyme AB total was .91. Saying "equivocal". not sure what that means...
I dont know what else to do. I am extremely depressed, my boyfriend left me. I am thought of as some self absorbed complainer. I worked my whole life in social services to end up like this? I have gone to a doctor every month for a year over this (general prac) and they didnt know what to do. To say i am pissed off is an understatement. What else should i do or know before i go into this Nuro docs office?
confusion, brain swelling (left ventrical), extreme fatigue, fibro and chronic fatigue syndrome was diagnosed, SED rate of 25, negative results on my nuclear brain scan (free of tumors and blockages), low grade fevers, lyme ab igm .96, memory & concentration, pain and last but not least some odd joint swelling in my right ankle. Vitamin B-12 was 426. I have had chronic sinus infections also, also had at least 2 bouts with viral meningitis. My Lyme AB total was .91. Saying "equivocal". not sure what that means...
I dont know what else to do. I am extremely depressed, my boyfriend left me. I am thought of as some self absorbed complainer. I worked my whole life in social services to end up like this? I have gone to a doctor every month for a year over this (general prac) and they didnt know what to do. To say i am pissed off is an understatement. What else should i do or know before i go into this Nuro docs office?
my advice to anyone who suspects they may have lyme is to find a lyme literate medical doctor [LLMD] - these doctors know the 'whole picture' of lyme and will diagnose based on symptoms - knowing how unreliable serology tests can be.
I realise that taking high doses of antibiotics is not without risk - but this is what I have done - only ever had 'negative' serology test for lyme.
My LLMD. said that whatever the 'test' came back with pos. or neg.- the treatment would be the same - this was based on my symptoms
If I had been through exhaustive tests and seen numerous 'specialists' - with no diagnosis at the end of it - I would try antibiotics - I have often read and is also my experience - that some folks have been given antibiotics for an un-related health prob. eg;chest infection - and found that they feel better as far as their 'other' symptoms are concerned - this was what pushed me to see an LLMD.
I think the risk of taking the antibiotic is worthwhile to see if there is a reaction. Antibiotics can make lyme symptoms worse and even bring about new symptoms but even this would maybe give some kind of answer.
I realise that taking high doses of antibiotics is not without risk - but this is what I have done - only ever had 'negative' serology test for lyme.
My LLMD. said that whatever the 'test' came back with pos. or neg.- the treatment would be the same - this was based on my symptoms
If I had been through exhaustive tests and seen numerous 'specialists' - with no diagnosis at the end of it - I would try antibiotics - I have often read and is also my experience - that some folks have been given antibiotics for an un-related health prob. eg;chest infection - and found that they feel better as far as their 'other' symptoms are concerned - this was what pushed me to see an LLMD.
I think the risk of taking the antibiotic is worthwhile to see if there is a reaction. Antibiotics can make lyme symptoms worse and even bring about new symptoms but even this would maybe give some kind of answer.
Hi, I am a newb here and have just been diagnosed with Lyme disease. The doctor just took a blood test and ran it for different things including Lyme disease...I don't understand why they can't do that for you...take a blood test for Lyme disease. Good luck to you and do not get depressed over this, please, it is not worth it.
There are tests. It's the reliability and the widely-adapted criteria for positive results that leave many without a diagnosis.
The standard testing has two stages: an ELISA, which is like a screening, and a Western blot, that tests for specific Lyme antibodies. You only get the 2nd test IF the first test is positive. On the Western blot, the CDC requires 5 IgG or 2 IgM "bands" for a diagnosis. Yet many sick patients have fewer than the required bands appear, and are then denied diagnosis/treatment.
My ELISA was negative twice. My Western blot (that I had to get a Lyme specialist to order through a specialty lab, my regular doc and all the neuros refused to order the test) had 1 IgM band and 2 IgG bands, so I am technically seronegative.
My spinal fluid was also tested after a lumbar puncture I had to rule out MS. It was also negative for Lyme.
Many doctors stand behind the testing, only a small fraction support that Lyme is a clinical diagnosis (relying on history and symptoms, not just lab results).
The standard testing has two stages: an ELISA, which is like a screening, and a Western blot, that tests for specific Lyme antibodies. You only get the 2nd test IF the first test is positive. On the Western blot, the CDC requires 5 IgG or 2 IgM "bands" for a diagnosis. Yet many sick patients have fewer than the required bands appear, and are then denied diagnosis/treatment.
My ELISA was negative twice. My Western blot (that I had to get a Lyme specialist to order through a specialty lab, my regular doc and all the neuros refused to order the test) had 1 IgM band and 2 IgG bands, so I am technically seronegative.
My spinal fluid was also tested after a lumbar puncture I had to rule out MS. It was also negative for Lyme.
Many doctors stand behind the testing, only a small fraction support that Lyme is a clinical diagnosis (relying on history and symptoms, not just lab results).
WOW, its really shocking that do not have some sorta test to see if people would hae Lymes Disease. I am beyond aggrivated to be honest.
My experience with neuro's is similar to what wonko described. I saw 6. Despite being barely able to walk at the time none were able to diagnose me since my tests were normal. So instead I got diagnoses like FMS, CFS, anxiety and my favorite....somatoform disorder! Not one them knew anything about lyme. So don't be surprised if you get the "you don't have lyme" comment. Don't give up. You may or may not have it.
I ditto JackieCalifonia's assessment of neurologists. I saw 4 neuros in 2008, none could diagnosis me with anything and all strongly denied even the possibility that I could have Lyme. They put me on nerve pain medication and sent me for a ton of tests, including several MRIs and a lumbar puncture, all of which would be prohibitive without insurance.
I do think it is important to rule out other conditions, including neurological disorders, to confirm Lyme in cases where the Lyme tests are all negative. But if you have positive tests, then maybe you can move ahead.
The fact that you have systemic systems (so not just your nervous system is affected), is characteristic of Lyme, though you should probably get lupus ruled out, too. I'm sure you know that no one can diagnosis you online, and I'm just another patient dealing with this.
Lyme does do battle with your emotions, big time. The stress of not being diagnosed is enormous. The fact that Lyme is a controversial disease that is difficult to test and diagnose, with strongly polarized views on treatment, adds to that stress. For me, Lyme impaired my cognitive function, so to make matters worse I was trying to navigate the situation through mental thick pea soup. And it's lonely being sick. I had even very close friends put up walls and shut me out. When I finally learned that I had Lyme, I was beyond angry, as I wastes so much time seeing the wrong doctors for the wrong thing, and taking the wrong medication.
Things you should know: If your doc does dx Lyme, then you need to know about treatment options. The good news is that Lyme can be treated with antibiotics, of which several varieties are not that expensive. The bad news is that depending on your stage of illness, you may need to take them for a long time, and you may feel worse before you get better ("Herxheimer" reaction). Check out the ILADS site, it has a lot of info about treatment.
If you do not get a dx of Lyme from the neuro, like JackieCalifornia said, that DOES NOT MEAN THAT YOU DON'T HAVE IT. Sorry for the caps, but yeah, I feel strongly about that point. You may need to seek a so-called "Lyme literate" physician, or "LLMD." This is what I did. If/as you learn more about the controversies surrounding Lyme, you'll learn that only certain docs will diagnose/treat difficult cases. Again, the ILADS site has a lot of good info.
Keep us posted!
I do think it is important to rule out other conditions, including neurological disorders, to confirm Lyme in cases where the Lyme tests are all negative. But if you have positive tests, then maybe you can move ahead.
The fact that you have systemic systems (so not just your nervous system is affected), is characteristic of Lyme, though you should probably get lupus ruled out, too. I'm sure you know that no one can diagnosis you online, and I'm just another patient dealing with this.
Lyme does do battle with your emotions, big time. The stress of not being diagnosed is enormous. The fact that Lyme is a controversial disease that is difficult to test and diagnose, with strongly polarized views on treatment, adds to that stress. For me, Lyme impaired my cognitive function, so to make matters worse I was trying to navigate the situation through mental thick pea soup. And it's lonely being sick. I had even very close friends put up walls and shut me out. When I finally learned that I had Lyme, I was beyond angry, as I wastes so much time seeing the wrong doctors for the wrong thing, and taking the wrong medication.
Things you should know: If your doc does dx Lyme, then you need to know about treatment options. The good news is that Lyme can be treated with antibiotics, of which several varieties are not that expensive. The bad news is that depending on your stage of illness, you may need to take them for a long time, and you may feel worse before you get better ("Herxheimer" reaction). Check out the ILADS site, it has a lot of info about treatment.
If you do not get a dx of Lyme from the neuro, like JackieCalifornia said, that DOES NOT MEAN THAT YOU DON'T HAVE IT. Sorry for the caps, but yeah, I feel strongly about that point. You may need to seek a so-called "Lyme literate" physician, or "LLMD." This is what I did. If/as you learn more about the controversies surrounding Lyme, you'll learn that only certain docs will diagnose/treat difficult cases. Again, the ILADS site has a lot of good info.
Keep us posted!
I cant do much since i have no insurance and no money for any meds. If i had kids in Illinois i would get free health care...but i dont.
Equivocal means maybe yes, and maybe no.
Your symptoms sound to me like they could well be Lyme ... but I'm NOT medically trained, just a Lyme patient.
I'd suggest you keep copies of ALL your medical test results, starting with the dr you just saw and going forward. They will be useful, believe me.
See the neurologist, but if s/he says you don't have Lyme, ask why that conclusion. Take notes of what the dr says -- if you can, either during or more likely after the appointment. [I always try to but fail.]
And don't be discouraged if the neurologist tells you you don't have Lyme but s/he has no other diagnosis. Neurologists are usually pretty hardcore against the idea of Lyme, but you might get lucky.
For now, be glad that you have started on the journey to find out what's wrong and to get treatment. THAT is a very big and very necessary first step!
It's easy for Lyme to take over your life ... it happens to many if not most of us. Don't beat yourself up, just do the best you can and know that your body is struggling to get well. Be kind to yourself -- you and your body are not enemies -- it's the 'bugs'.
There is definitely a psychological component to Lyme, many of us go through bad times that way. Anxiety and depression come and go. Be sure to talk to your dr about that aspect of it, or if s/he won't listen, find someone who will at a clinic or somewhere. You need and deserve the support.
Let us know what happens at the neuro's office, ok?
Your symptoms sound to me like they could well be Lyme ... but I'm NOT medically trained, just a Lyme patient.
I'd suggest you keep copies of ALL your medical test results, starting with the dr you just saw and going forward. They will be useful, believe me.
See the neurologist, but if s/he says you don't have Lyme, ask why that conclusion. Take notes of what the dr says -- if you can, either during or more likely after the appointment. [I always try to but fail.]
And don't be discouraged if the neurologist tells you you don't have Lyme but s/he has no other diagnosis. Neurologists are usually pretty hardcore against the idea of Lyme, but you might get lucky.
For now, be glad that you have started on the journey to find out what's wrong and to get treatment. THAT is a very big and very necessary first step!
It's easy for Lyme to take over your life ... it happens to many if not most of us. Don't beat yourself up, just do the best you can and know that your body is struggling to get well. Be kind to yourself -- you and your body are not enemies -- it's the 'bugs'.
There is definitely a psychological component to Lyme, many of us go through bad times that way. Anxiety and depression come and go. Be sure to talk to your dr about that aspect of it, or if s/he won't listen, find someone who will at a clinic or somewhere. You need and deserve the support.
Let us know what happens at the neuro's office, ok?
Also i forgot to mention, i have had for well over a year and a half a whooshing sound in my left ear. It has not gone away.
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