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Lyme or Not?
I had a Lyme Screening done and it was HIGH (poss) and then they followed up with a Western Blot. . . that was Neg. I dont understand. My Dr wont return my calls but is sending me to Rheumatologist (after he saw labs and also all my symptoms the past 4-5 months) next week and im wondering what he's thinking is wrong with me.
Given your situation, you would do yourself a great service to look into the two opposing views within the medical community regarding Lyme disease.
In the mainstream corner is the IDSA ( Infectious Diseases Society of America), which, in a nutshell, purports that Lyme is "difficult to get, easy to diagnose, easy to treat and cure."
In the opposing corner is ILADS ( International Lyme and Associated Diseases Society), which adapts a wider definition of diagnostic criteria and treatment guidelines.
While the two groups have differing views on the disease, on aspect on which they can agree is that the most effective treatment is early treatment. Therefore, in your situation, I would suggest that you pursue the matter further. If Lyme is left untreated, it becomes systemic and chronic, and can invade the nervous system, joints, and heart. The earlier it is diagnosed and treated, the more likely it is that the patient will fully recover.
A great book (though a bit dense at times) that weaves personal experience with the history and science of Lyme disease is "Cure Unknown" by P. Weintraub, in many libraries and in an affordable paperback.
You can internet search ILADS and the book "Cure Unkown" to find their respective websites that have a lot of content that may be of interest to you.
Good luck, and don't hesitate to seek more information regarding Lyme disease, especially if your doctors can not make a satisfactory diagnosis to explain your symptoms.
In the mainstream corner is the IDSA ( Infectious Diseases Society of America), which, in a nutshell, purports that Lyme is "difficult to get, easy to diagnose, easy to treat and cure."
In the opposing corner is ILADS ( International Lyme and Associated Diseases Society), which adapts a wider definition of diagnostic criteria and treatment guidelines.
While the two groups have differing views on the disease, on aspect on which they can agree is that the most effective treatment is early treatment. Therefore, in your situation, I would suggest that you pursue the matter further. If Lyme is left untreated, it becomes systemic and chronic, and can invade the nervous system, joints, and heart. The earlier it is diagnosed and treated, the more likely it is that the patient will fully recover.
A great book (though a bit dense at times) that weaves personal experience with the history and science of Lyme disease is "Cure Unknown" by P. Weintraub, in many libraries and in an affordable paperback.
You can internet search ILADS and the book "Cure Unkown" to find their respective websites that have a lot of content that may be of interest to you.
Good luck, and don't hesitate to seek more information regarding Lyme disease, especially if your doctors can not make a satisfactory diagnosis to explain your symptoms.
I agree with Wonko.
It sounds like you've so far received the mainstream medicine approach, which is fine, but you need to know there is another approach and decide whether to look into it -- that other approach is described at the ILADS website, as Wonko says above, but it's pretty dense reading in some places, so don't get overwhelmed by it.
Lyme testing is always done in 'two tiers' as you have had: if the first test will is positive, a second test is done because the first test has a high error rate and will say positive in an unacceptably high number of cases where the patient does NOT have Lyme. Like much in life, however, it's not black and white, it's a lot of shades of grey, and you need an experienced MD to read the tests in view of your symptoms. That last part is crucial to getting a proper evaluation, and too many lazy docs rely just on the tests and not their eyes.
That second level test also has some issues, because different docs read it different ways. The good news is that your first MD takes it all seriously enough to have you evaluated by a specialist.
The (possible) bad news is: the specialist is a rheumatologist. Rheumatologists can be hard core about what symptoms must be present to diagnose Lyme, since rheumies focus on joints -- and if your knees don't hurt, the rheumy may say 'no Lyme.'
The next issue you will face, if your docs say you have Lyme, is treatment and how long is should continue. If you get to that stage, come back and we'll talk to you about that part.
Question for you: Were you tested for any diseases other than Lyme? The ticks that carry Lyme often have other diseases that give a different set of symptoms, need separate testing, and need different meds from Lyme. Getting the proper diagnosis is the most important step, so I would suggest you ask your MDs what else you are being tested for, if anything.
You are doing all the right things, and asking all the right questions. Let us know how your appointment with the rheumy goes. Oh, and if an MD asks where you got your questions about Lyme etc., I have learned to say "Oh, just wondering" instead of saying "The internet", because MDs seem to assume there is nothing but wrong, bad, awful information and advice on the internet ... never mind Harvard and Columbia and the University of Maryland medical center all have web information on Lyme.
Hang in there.
It sounds like you've so far received the mainstream medicine approach, which is fine, but you need to know there is another approach and decide whether to look into it -- that other approach is described at the ILADS website, as Wonko says above, but it's pretty dense reading in some places, so don't get overwhelmed by it.
Lyme testing is always done in 'two tiers' as you have had: if the first test will is positive, a second test is done because the first test has a high error rate and will say positive in an unacceptably high number of cases where the patient does NOT have Lyme. Like much in life, however, it's not black and white, it's a lot of shades of grey, and you need an experienced MD to read the tests in view of your symptoms. That last part is crucial to getting a proper evaluation, and too many lazy docs rely just on the tests and not their eyes.
That second level test also has some issues, because different docs read it different ways. The good news is that your first MD takes it all seriously enough to have you evaluated by a specialist.
The (possible) bad news is: the specialist is a rheumatologist. Rheumatologists can be hard core about what symptoms must be present to diagnose Lyme, since rheumies focus on joints -- and if your knees don't hurt, the rheumy may say 'no Lyme.'
The next issue you will face, if your docs say you have Lyme, is treatment and how long is should continue. If you get to that stage, come back and we'll talk to you about that part.
Question for you: Were you tested for any diseases other than Lyme? The ticks that carry Lyme often have other diseases that give a different set of symptoms, need separate testing, and need different meds from Lyme. Getting the proper diagnosis is the most important step, so I would suggest you ask your MDs what else you are being tested for, if anything.
You are doing all the right things, and asking all the right questions. Let us know how your appointment with the rheumy goes. Oh, and if an MD asks where you got your questions about Lyme etc., I have learned to say "Oh, just wondering" instead of saying "The internet", because MDs seem to assume there is nothing but wrong, bad, awful information and advice on the internet ... never mind Harvard and Columbia and the University of Maryland medical center all have web information on Lyme.
Hang in there.
Thanks alot and yes i'll re-post after my appt on Aug 18th. Im scared to go but i know it needs to be done to at least see what he has to say. I will be back for sure thank you for your info . . . . :)
Don't be scared! The scary thing is NOT knowing. Once you know what's up, then it's on to figuring out what to do and to take charge!
You can do it!
You can do it!
Well, not Lyme he said. I failed all the tests the rheumatologist gave me last wednesday. Im being sent for MR of brain on saturday night 8/28 for Multiple Sclerosis (or Lupus). I am completely dumbfounded at this point.
I'll keep you posted as i hear anything.
Thanks
I'll keep you posted as i hear anything.
Thanks
Fair warning, neurologists and rheumatologists are the original, true believers that Lyme is rare, hard to get, and easy to get rid of. It's blind men and the elephant: the rheumy sees only knees. the neuro sees a patient who isn't using a cane or has a big old brain tumor. neither sees the misery.
In your shoes, I would get to a LYME specialist for a work up -- an LLMD. MS and lupus are two common misdiagnoses for Lyme.
Let us know how you do, okay? Best wishes!
In your shoes, I would get to a LYME specialist for a work up -- an LLMD. MS and lupus are two common misdiagnoses for Lyme.
Let us know how you do, okay? Best wishes!
Well. . .uuugh back to square one again i think. He diagnosed me with Fibromyalgia. I think because he can't figure anything else out. I failed the Romberg Test and says he cant treat me for Fibro due to too many neurological symptoms and failing the Romberg. MRI brain didnt show any lesions. . . it was clean and clear - i got my own copy to make sure. I have sinus disease (I live in NY -everyone probably has it here, lol). Now he wants me to see a neurologist and do more tests. Im so weak and tired and feel too sick to be bouncing all around the planet to all these Dr's. I asked him about the Lyme and he said "no, thats not it, you dont have Lyme". So doesnt really answer why my lyme screening was so high but WB was negative. . . dig-bat dr's. Never get any answers.
sorry to hear what you are going through fox24.
Your ELISA could be positive but Western blot negative because--pure & simple--to be perfectly blunt: the tests are Crap. For any # of reasons.
http://www.anapsid.org/lyme/lymeseroneg.html
Since you are in NY, I would strongly recommend visiting one of the lyme-literate doctors in your area.
Note: a doctor cannot say "no you don't have lyme". There is no test in existence that will tell you that because of the deplorable inaccuracy of existing tests.
Like Jackie stated, it's like the elephant and the blind man. They see what they want to see---through the lens of their specialty.
Lyme is the great imitator so can look like any # of disease or syndromes including the ones you were evaluated for.
I've heard far too many stories of misdiagnosis or Mds entertaining the possibility of MS, ALS, lupus, et al. when lyme disease can be the causative factor and is successfully treatable if caught early. Not to scare you, but I've know far too many people who have wound up pretty much in a wheelchair or otherwise disabled because they bopped around from dr to dr for too long. Some mostly-recovered on IV antibiotics, others have no access to treatment.
tell me--is the doctor who diagnosed you with Fibromyalgia a fibro specialist?
My lyme Md is a FM specialist, her field was originally and still is Chronic Fatigue and Fibromyalgia. She found that in the lyme patients she sees, A LOT of their pain was trash-heaped into a FM dx by non-specialists. There are very specific diagnostic criteria for FM & its not to be meant as a dumping ground for unexplained cases.
Lyme patients with FM diagnosis were re-evaluated & un-diagnosed by her. Also, she stated that about 80% of the Chronic Fatigue cases that walk through her door, when treated for lyme, improve. She feels there is more a connection with CFS and lyme, than FM and lyme. but only because FM is diagnosed by practitioners who don't know what they are doing. That is her take anyway.
Get yourself to a lyme-literate doctor for evaluation. S/he may rule it out clinically, who knows? but if you are going to go to One more Md, IMHO it should be a lyme specialist. Most, I find, are better-versed in the myriad of syndromes and systemic/organ issues that arise with Lyme disease as well. Most are sleuths when it comes to medical puzzlers. but it does depend on who you see.
Best of luck.
Your ELISA could be positive but Western blot negative because--pure & simple--to be perfectly blunt: the tests are Crap. For any # of reasons.
http://www.anapsid.org/lyme/lymeseroneg.html
Since you are in NY, I would strongly recommend visiting one of the lyme-literate doctors in your area.
Note: a doctor cannot say "no you don't have lyme". There is no test in existence that will tell you that because of the deplorable inaccuracy of existing tests.
Like Jackie stated, it's like the elephant and the blind man. They see what they want to see---through the lens of their specialty.
Lyme is the great imitator so can look like any # of disease or syndromes including the ones you were evaluated for.
I've heard far too many stories of misdiagnosis or Mds entertaining the possibility of MS, ALS, lupus, et al. when lyme disease can be the causative factor and is successfully treatable if caught early. Not to scare you, but I've know far too many people who have wound up pretty much in a wheelchair or otherwise disabled because they bopped around from dr to dr for too long. Some mostly-recovered on IV antibiotics, others have no access to treatment.
tell me--is the doctor who diagnosed you with Fibromyalgia a fibro specialist?
My lyme Md is a FM specialist, her field was originally and still is Chronic Fatigue and Fibromyalgia. She found that in the lyme patients she sees, A LOT of their pain was trash-heaped into a FM dx by non-specialists. There are very specific diagnostic criteria for FM & its not to be meant as a dumping ground for unexplained cases.
Lyme patients with FM diagnosis were re-evaluated & un-diagnosed by her. Also, she stated that about 80% of the Chronic Fatigue cases that walk through her door, when treated for lyme, improve. She feels there is more a connection with CFS and lyme, than FM and lyme. but only because FM is diagnosed by practitioners who don't know what they are doing. That is her take anyway.
Get yourself to a lyme-literate doctor for evaluation. S/he may rule it out clinically, who knows? but if you are going to go to One more Md, IMHO it should be a lyme specialist. Most, I find, are better-versed in the myriad of syndromes and systemic/organ issues that arise with Lyme disease as well. Most are sleuths when it comes to medical puzzlers. but it does depend on who you see.
Best of luck.
WOW! Thank you so much. The Dr that diagnosed me was a Rheumatologist. The part that gets me is if it IS FM, then he's sayin he cant treat due to neuro issues being pressent, wouldnt that auto make you think it may not be FM? I understand it mimics, the muscle/joint pain, issues with ears, eyes, etc and everything in between. . . but Neuro issues too?? I know Lyme can do stuff Neuro to you, and i also dont like the "woozy"/faint feelings like im gonna pass out -i get scared home alone alot. dont think FM does that.
FM is a syndrome, which means it is just a collection of symptoms. There is no known underlying cause for FM, and sadly, as pointed out by 22, it is often an umbrella dx given to patients when doctors can't figure out what is wrong.
Lyme is capable of systemic symptoms like what you are experiencing, affecting the nerves AND joints. It can affect the eyes, the heart, the skin, and the symptoms can move around day to day, making you feel both sick and crazy.
Do consider the LLMD route-if nothing else, it is one more stone to uncover. Lyme is treatable, but you need to find the right doc to help you explore that possibility!
Lyme is capable of systemic symptoms like what you are experiencing, affecting the nerves AND joints. It can affect the eyes, the heart, the skin, and the symptoms can move around day to day, making you feel both sick and crazy.
Do consider the LLMD route-if nothing else, it is one more stone to uncover. Lyme is treatable, but you need to find the right doc to help you explore that possibility!
I dont even know where to begin. . . I've had tons of symptoms. I passed out (black out) and when i woke i vomited everywhere (usually a sign of neuro problem) and after the 2nd time it happened I went to the Dr all symptoms came after those 3 episodes. Body tremors, aches, pains in muscles/joinrs, hurts to move day to day. I have really bad "floaters" in my eyes (black spots) and never seem to go away even though eye dr said they will come and go. My hearing is effected daily, some days im ok, others im deaf and cant hear anything but mumbles. I get heart palpitations, sensitive to heat ( I take cooler showers now instead of hot) legs are weak and wobbly and eyes are so dry im now takin 300$ eye drops that seem to work ok but expensive, I keep having these broken blood vessels (small) all over my arms and chest and sometimes my face. There gone one day and the next i get them in different spots. My PCP sent me to Rhematologist and he says Fibromyalgia, but I dont know. Now im heading to Neurologist.
Sorry you're not better yet, fox24.
To quote 22 dreams above: "Get yourself to a lyme-literate doctor for evaluation. S/he may rule it out clinically, who knows? but if you are going to go to One more Md, IMHO it should be a lyme specialist. Most, I find, are better-versed in the myriad of syndromes and systemic/organ issues that arise with Lyme disease as well. Most are sleuths when it comes to medical puzzlers. but it does depend on who you see."
I gotta agree with 22. Best wishes to you --
To quote 22 dreams above: "Get yourself to a lyme-literate doctor for evaluation. S/he may rule it out clinically, who knows? but if you are going to go to One more Md, IMHO it should be a lyme specialist. Most, I find, are better-versed in the myriad of syndromes and systemic/organ issues that arise with Lyme disease as well. Most are sleuths when it comes to medical puzzlers. but it does depend on who you see."
I gotta agree with 22. Best wishes to you --
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