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How can I be sure that I don't have Lyme disease?
Hi Lyme Disease community,
I bet you get this question here every so often, but how can I be really sure that I don't have Lyme disease?
I've had several neuro-like symptoms that began about a year ago including tingling and burning in the face, hands, feet. My brain MRI showed some lesions, but they are non-specific and they did not change between Feb and July '08. Lyme was listed as a possible etiology.
I've had two rounds of blood tests for Lyme in Jan and July, both negative. I had a lumbar puncture in July that was negative for everything.
On August I was on a 15 day course of oral steroids and temporarility felt 100% better. My doctor said if I had Lyme disease, the steroids would have made it worse.
Since the change in weather here, I've had joint problems. I wake up very stiff with painful joints, symmetric on both sides, the worst in my fingers and feet but also in angles and knees. Exercise helps.
My blood work in Jan had a high white cell count, and in July had a high c-reactive protetin. To my knowledge, all other blood work was normal.
Sorry this is so long. I've been seeing doctors for about a year and no one knows what is causing my symptoms. Every so often, a friend, family member, or co-worker comes to me with a print out from the internet about Lyme and says "Are you sure you don't have this?"
I even once asked my physician to try anti-biotics to see what would happen, but she didn't think it was a good idea. But she's the one who put me on oral steroids without knowing what effect they would have, so I'm not sure why she is so hesitant.
My physician, neurologist and rheumatologist all say no. Can I be sure, or should I try to find a Lyme specialist?
Again, sorry this is long and I hope I don't sound too crazy. Any advice is much appreciated.
I bet you get this question here every so often, but how can I be really sure that I don't have Lyme disease?
I've had several neuro-like symptoms that began about a year ago including tingling and burning in the face, hands, feet. My brain MRI showed some lesions, but they are non-specific and they did not change between Feb and July '08. Lyme was listed as a possible etiology.
I've had two rounds of blood tests for Lyme in Jan and July, both negative. I had a lumbar puncture in July that was negative for everything.
On August I was on a 15 day course of oral steroids and temporarility felt 100% better. My doctor said if I had Lyme disease, the steroids would have made it worse.
Since the change in weather here, I've had joint problems. I wake up very stiff with painful joints, symmetric on both sides, the worst in my fingers and feet but also in angles and knees. Exercise helps.
My blood work in Jan had a high white cell count, and in July had a high c-reactive protetin. To my knowledge, all other blood work was normal.
Sorry this is so long. I've been seeing doctors for about a year and no one knows what is causing my symptoms. Every so often, a friend, family member, or co-worker comes to me with a print out from the internet about Lyme and says "Are you sure you don't have this?"
I even once asked my physician to try anti-biotics to see what would happen, but she didn't think it was a good idea. But she's the one who put me on oral steroids without knowing what effect they would have, so I'm not sure why she is so hesitant.
My physician, neurologist and rheumatologist all say no. Can I be sure, or should I try to find a Lyme specialist?
Again, sorry this is long and I hope I don't sound too crazy. Any advice is much appreciated.
The rash can last 3-4 weeks which is about how long mine lasted. It takes around 3 days to a month after the bite for the rash to appear.
I had numerous, horrific rashes all over my body after the first one. I had one that was the size of my whole thigh.
I have never considered IV since I have not had a CDC positive test so I'm sure my insurance wouldn't cover it. Plus, I traveled out of state for treatment which is a real pain.
I never saw a tick on me at the time but they are easy to miss. I pulled 3 off my scalp this past summer. They were attached. I found them when I felt a bump on my scalp.
I had numerous, horrific rashes all over my body after the first one. I had one that was the size of my whole thigh.
I have never considered IV since I have not had a CDC positive test so I'm sure my insurance wouldn't cover it. Plus, I traveled out of state for treatment which is a real pain.
I never saw a tick on me at the time but they are easy to miss. I pulled 3 off my scalp this past summer. They were attached. I found them when I felt a bump on my scalp.
Thanks for your detailed reply. The LLMD believes that the CD57 is good evidence of Lyme. I read elsewhere that AIDS or auto-immune disorder can also do this. Of course, I have plenty of other symptoms consistent with auto-immune, but no dx there either.
Did you ever go/consider IV antibiotics?
BTW, how long are the rashes typically visible on the body for?
Did you ever go/consider IV antibiotics?
BTW, how long are the rashes typically visible on the body for?
No reliable test for Lyme. so many conflicting reports of false negatives false postives and then the llmd's only look at certain "bans" . if you are negative for lyme, ask for co-infection tests. Bartonella i was told has similar symptoms to LD -- another difficult to treat infectious agent.
I don't know if the joints affected are symetrical or not.
Hope you find answers. Unfortunately, no one with Lyme Disease seems to have any clear cut diagnosis, treatment or cure. If they do, they're not posting on the Internet!
Take care...
I don't know if the joints affected are symetrical or not.
Hope you find answers. Unfortunately, no one with Lyme Disease seems to have any clear cut diagnosis, treatment or cure. If they do, they're not posting on the Internet!
Take care...
I would never go to an ID for this issue. Everyone seems to get the same answer. None.
I never saw a tick at the time of the rash but I was walking in the woods, along side of a river in grass up to my neck. I walked here 4 times a week with my dogs. I wore shorts at the time. I woke up one day and noticed 3 bullseye rashes across my left rib cage. It was the strangest rash I had ever seen. I had never even heard of lyme. It was a long time ago (1992). The rash lasted a month or so and went away. My first symptom was severe eye pain and floaters, starting shortly after the rash. Then it was moving joint pains, fatigue, fevers etc. One thing after another. I remember crying with hip pain. I was 30 years old. The neuro stuff hit me about 6-8 mos after the rash. Twitching from head to toe, numbness, weakness, vision problems, partial paralysis, burning, cold, hot, stabbing and other skin sensations. I had bizarre rashes all over my body for weeks on end, fevers, diarrhea, vomiting, sore throats, ear ringing, severe brain fog, elevated liver enzymes. I had full work-up for MS and it was negative. I was told I had a "non-specific" virus and a central nervous system disorder but he "had no idea" what it was. I finally heard about lyme from a deer hunter and I saw pictures of the rash. It was exactly what I had. I ended up traveling out of state for treatment. After about 4 months of oral treatment I started getting better. Long story short, it took about 5 years for me to recover to about 90%. I only took the meds only for a few months though. I stopped them when I started improving. I was ok for about 4 or 5 years and it all hit again after having surgery. Again, I took the treatment and have recovered to about 75%. I still have a fair amout of pain and stiffness but I am able to work and live life. I personally feel that once it's disseminated it's there for good. It can be treated and/or go dormant but it returns during or after severe stress like surgery. I never had the CD 57 drawn but supposedly it's only low in cases of lyme and AIDS.
I never saw a tick at the time of the rash but I was walking in the woods, along side of a river in grass up to my neck. I walked here 4 times a week with my dogs. I wore shorts at the time. I woke up one day and noticed 3 bullseye rashes across my left rib cage. It was the strangest rash I had ever seen. I had never even heard of lyme. It was a long time ago (1992). The rash lasted a month or so and went away. My first symptom was severe eye pain and floaters, starting shortly after the rash. Then it was moving joint pains, fatigue, fevers etc. One thing after another. I remember crying with hip pain. I was 30 years old. The neuro stuff hit me about 6-8 mos after the rash. Twitching from head to toe, numbness, weakness, vision problems, partial paralysis, burning, cold, hot, stabbing and other skin sensations. I had bizarre rashes all over my body for weeks on end, fevers, diarrhea, vomiting, sore throats, ear ringing, severe brain fog, elevated liver enzymes. I had full work-up for MS and it was negative. I was told I had a "non-specific" virus and a central nervous system disorder but he "had no idea" what it was. I finally heard about lyme from a deer hunter and I saw pictures of the rash. It was exactly what I had. I ended up traveling out of state for treatment. After about 4 months of oral treatment I started getting better. Long story short, it took about 5 years for me to recover to about 90%. I only took the meds only for a few months though. I stopped them when I started improving. I was ok for about 4 or 5 years and it all hit again after having surgery. Again, I took the treatment and have recovered to about 75%. I still have a fair amout of pain and stiffness but I am able to work and live life. I personally feel that once it's disseminated it's there for good. It can be treated and/or go dormant but it returns during or after severe stress like surgery. I never had the CD 57 drawn but supposedly it's only low in cases of lyme and AIDS.
Patsy mentioned that her problems started shortly after she got the rash. Patsy, can you comment how long the rash appeared after you think you were bit (I assume very soon afterwards)?
The reason I'm asking is because I don't know how it works with most people infected with Lyme, but my symptoms came on very gradually and I can't pin point this to any Lyme exposure when I first got my symptoms.
My first symptoms showed up a couple years ago, and although I may have been exposed 2 years ago, I never saw a tic/bite/rash at that time (or ever for that matter), and I was reasonably careful. I did find a tic on me ~10 years ago, but I didn't get a rash and don't know if I actually got bit (it was on my scalp, so a bit tough to see a rash I guess).
Anyway, all of the ID Drs mentioned that it was unlikely that the tic that was on my head 10 years ago would lead to symptoms that didn't begin until years later, unless there were some kind of symptoms/sweats, etc., near the time of that event. I don't know if the LLMDs agree with that or not. I wonder whether most of the Lyme patients have a story similar to Patsy in that they noticed symptoms near the time of the tic exposure or not.
On a related note: I am wondering if any of you also got tested for CD57 along with Western Blot. My score was very low from IGNX, which indicates chronic Lyme, but when I show this to ID Drs, of course, they have no idea what this means. I suspect that only LLMDs use this test.
The reason I'm asking is because I don't know how it works with most people infected with Lyme, but my symptoms came on very gradually and I can't pin point this to any Lyme exposure when I first got my symptoms.
My first symptoms showed up a couple years ago, and although I may have been exposed 2 years ago, I never saw a tic/bite/rash at that time (or ever for that matter), and I was reasonably careful. I did find a tic on me ~10 years ago, but I didn't get a rash and don't know if I actually got bit (it was on my scalp, so a bit tough to see a rash I guess).
Anyway, all of the ID Drs mentioned that it was unlikely that the tic that was on my head 10 years ago would lead to symptoms that didn't begin until years later, unless there were some kind of symptoms/sweats, etc., near the time of that event. I don't know if the LLMDs agree with that or not. I wonder whether most of the Lyme patients have a story similar to Patsy in that they noticed symptoms near the time of the tic exposure or not.
On a related note: I am wondering if any of you also got tested for CD57 along with Western Blot. My score was very low from IGNX, which indicates chronic Lyme, but when I show this to ID Drs, of course, they have no idea what this means. I suspect that only LLMDs use this test.
My experience was quite different. I had profound MS symptoms with weakness,numbness, tingling, dragging of a leg, blurred vision and lots more. I had every neuro test available including MRI's, spinal tap, EMG, evoked potentials. Some more than once. All tests were normal. I had the bullseye rash but never tested positive on a western blot through either a standard lab or Igenex. All my problems started shortly after the rash. I saw a lyme doctor who told me he didn't know whether I had lyme or not as the testing is not accurate. I am also quite a skeptic about all of this as I work in the healthcare field. He was willing to try treatment though. It worked. I am so much improved. I did have a relapse of symptoms after having surgery and again I improved with antibiotic treatment. I will never be convinced as to what I have or don't have but whatever it is, it responds to antibiotic treatment.
I also feel lyme is being both underdiagnosed and over diagnosed. I agree if someone undergoes IV antibiotic treatment and does not improve then it's not lyme. Sadly, I see people who continue this treatment and are still convinced they have lyme
when they probably really have MS. I think it goes both ways.
I also feel lyme is being both underdiagnosed and over diagnosed. I agree if someone undergoes IV antibiotic treatment and does not improve then it's not lyme. Sadly, I see people who continue this treatment and are still convinced they have lyme
when they probably really have MS. I think it goes both ways.
I wanted to post my experience which has been similarly frustrating. It may not add any information, and may (hopefully not) confuse the issue.
First, some information on my situation. Toward the beginning of this year, I was experiencing strange neurological symptoms like numbness and tingling. Nothing debilitating, but I knew something was up. I went to my PCP, who ordered a slew of blood tests and an MRI. All the blood tests came back negative including the lyme test. This was a western blot, and none of the bands they tested, either IGM or IGG, showed up (I saw the results myself). However, the MRI showed white matter lesions on the brain. I went to see a neurologist who eventually diagnosed MS. In the meantime, my PCP recommended I get a blood test from Igenex. It turns out he is one of these "Lyme literate" doctors. Lo and behold, this test came back positive for Lyme disease, based on Igenex criteria. The PCP started me on a cocktail of oral antibiotics, which I started taking even though I wasn't convinced of the Lyme disease diagnosis. After a few weeks, I developed troubling side effects, and then a GI infection. Given my initial skepticism, this was enough for me to give up on the Lyme disease diagnosis.
What to take away from this? Well, after I forked over the money for the Igenex test (out-of-pocket), I did some searching online, and found they have some reliability issues. But everyone in the Lyme disease community will say Igenex is the best. I have seen posts from at least 2 people on this site who have MS, tested positive for Lyme by Igenex, but did not get better on IV antibiotics. Their symptoms did improve, however, on IV steroids. My guess is if you seek out a supposed LLMD, then he will assume you want a Lyme disease diagnosis and happily comply. Now, I will agree with the Lyme disease people on one point; I went to an appointment with an infectious disease specialist that was essentially useless. My take was that he was used to working on a hospital floor, and that seeing a patient in the office for lyme disease was boring. He had a book, looked up lyme disease and ir said treat with 2 weeks doxycycline. He refused to discuss the Igenex results with me.
My situation was a little different than yours; I didn't have any joint pain. So, my only advice is be leery. If you do decide to try antibiotics to see if they help, I would seriously consider taking Florastor or a similar product. This may help prevent getting a GI infection as a result of the ABX (this is used in Europe).
First, some information on my situation. Toward the beginning of this year, I was experiencing strange neurological symptoms like numbness and tingling. Nothing debilitating, but I knew something was up. I went to my PCP, who ordered a slew of blood tests and an MRI. All the blood tests came back negative including the lyme test. This was a western blot, and none of the bands they tested, either IGM or IGG, showed up (I saw the results myself). However, the MRI showed white matter lesions on the brain. I went to see a neurologist who eventually diagnosed MS. In the meantime, my PCP recommended I get a blood test from Igenex. It turns out he is one of these "Lyme literate" doctors. Lo and behold, this test came back positive for Lyme disease, based on Igenex criteria. The PCP started me on a cocktail of oral antibiotics, which I started taking even though I wasn't convinced of the Lyme disease diagnosis. After a few weeks, I developed troubling side effects, and then a GI infection. Given my initial skepticism, this was enough for me to give up on the Lyme disease diagnosis.
What to take away from this? Well, after I forked over the money for the Igenex test (out-of-pocket), I did some searching online, and found they have some reliability issues. But everyone in the Lyme disease community will say Igenex is the best. I have seen posts from at least 2 people on this site who have MS, tested positive for Lyme by Igenex, but did not get better on IV antibiotics. Their symptoms did improve, however, on IV steroids. My guess is if you seek out a supposed LLMD, then he will assume you want a Lyme disease diagnosis and happily comply. Now, I will agree with the Lyme disease people on one point; I went to an appointment with an infectious disease specialist that was essentially useless. My take was that he was used to working on a hospital floor, and that seeing a patient in the office for lyme disease was boring. He had a book, looked up lyme disease and ir said treat with 2 weeks doxycycline. He refused to discuss the Igenex results with me.
My situation was a little different than yours; I didn't have any joint pain. So, my only advice is be leery. If you do decide to try antibiotics to see if they help, I would seriously consider taking Florastor or a similar product. This may help prevent getting a GI infection as a result of the ABX (this is used in Europe).
I certainly hope so too.
Has anyone attempted to compile statistics for what fraction of people believe they have seen improvement from antibiotics, compared to those who saw no improvement (I realize this is vague criterion, but that would be a nice statistic for those of us debating how to proceed, at least it would be something to go on, since the Lyme serology isn't.
Has anyone attempted to compile statistics for what fraction of people believe they have seen improvement from antibiotics, compared to those who saw no improvement (I realize this is vague criterion, but that would be a nice statistic for those of us debating how to proceed, at least it would be something to go on, since the Lyme serology isn't.
This is why Congress REALLY needs to pass the lyme bill and so we can develop better testing. Part of the problem is that borrelia is very difficult to culture and is slow growing.
It is always better to provide evidence of the bacteria itself instead of our body's immune response to the bacteria.
I think many people are misdiagnosed and it goes both ways. I also think lyme can "trigger" other diseases in some people. We urgently need better testing so either lyme can be ruled out or treated EARLY!!
It really is so frustrating as a patient...we just want to know WHAT we have so we can work towards getting better.
I feel really fortunate to be getting better. It is just such a huge controversial mess!!
If the science was there showing the actual bacteria cultured from a person....then the mainstream medical community would have to acknowledge it!! At least maybe I can dream that they will some day.
Stacey
It is always better to provide evidence of the bacteria itself instead of our body's immune response to the bacteria.
I think many people are misdiagnosed and it goes both ways. I also think lyme can "trigger" other diseases in some people. We urgently need better testing so either lyme can be ruled out or treated EARLY!!
It really is so frustrating as a patient...we just want to know WHAT we have so we can work towards getting better.
I feel really fortunate to be getting better. It is just such a huge controversial mess!!
If the science was there showing the actual bacteria cultured from a person....then the mainstream medical community would have to acknowledge it!! At least maybe I can dream that they will some day.
Stacey
Here is the part I don't get.
How exactly DO LLMDs make clinical diagnoses if the serology is essentially useless. Seems to me that it is a big guessing game. Are the LLMDs basing their symptom list from only the folks they treat that had positive serology? Or do they base it from the people with symptoms that happen to improve from the anti-biotics or even comment on Herx reactions?
I suspect there are many people misdiagnosed in both directions. The last ID I saw thought it was more likely that I have a viral infection than Lyme based on my symptoms (again, not sure what is the justification for that conclusion). He also said that he has read many workups from IGNX and they give virtually the same result, but he was confident based on symptom list that only a small fraction of those individuals could have Lyme.
Just another opinion. Ugh. So discouraging how confusing this all is.
How exactly DO LLMDs make clinical diagnoses if the serology is essentially useless. Seems to me that it is a big guessing game. Are the LLMDs basing their symptom list from only the folks they treat that had positive serology? Or do they base it from the people with symptoms that happen to improve from the anti-biotics or even comment on Herx reactions?
I suspect there are many people misdiagnosed in both directions. The last ID I saw thought it was more likely that I have a viral infection than Lyme based on my symptoms (again, not sure what is the justification for that conclusion). He also said that he has read many workups from IGNX and they give virtually the same result, but he was confident based on symptom list that only a small fraction of those individuals could have Lyme.
Just another opinion. Ugh. So discouraging how confusing this all is.
jason80.. i just had to comment on your good point. Basically the tests mean nothing. Its all based on clinical diagnosis (symptoms, history of symtomps, etc.)
I have a great LLMD that is really informative and so knowledgable.
He said that the tests really weigh a minor factor in diagnosis. He actually likes to play guessing games on when the results come back!.. he's quite the character! He sends the tests to IgenX quite often, especially before and while being treated And he'll do a little drum roll before stating whether it came back positive or negative and what bands were positive and the lovely INDETERMINATES. He makes me laugh. For once I can laugh with a doctor, rather than being laughed at.
Anyways all i can suggest to those who are just starting their journey's on considering Lyme as the disease they are infected by, Keep strong, be adamant and don't give up and settle until you are satisfied with your diagnosis!
I have a great LLMD that is really informative and so knowledgable.
He said that the tests really weigh a minor factor in diagnosis. He actually likes to play guessing games on when the results come back!.. he's quite the character! He sends the tests to IgenX quite often, especially before and while being treated And he'll do a little drum roll before stating whether it came back positive or negative and what bands were positive and the lovely INDETERMINATES. He makes me laugh. For once I can laugh with a doctor, rather than being laughed at.
Anyways all i can suggest to those who are just starting their journey's on considering Lyme as the disease they are infected by, Keep strong, be adamant and don't give up and settle until you are satisfied with your diagnosis!
I agree with you regarding a convincing answer. It may never happen. Mainstream medicine likes to treat based on lab results. Doctors who know lyme rely on symptoms, history etc...I saw a lyme specialist and he said there is no way to know for sure unless you have a CDC positive test. He said if someone improves on antibiotics it is lyme, if not, then it's something else. I'm still not convinced and probably never will be. Even though I had the rash, have been walking in the woods my whole life, was very sick and recovered very much with treatment. I would still like to see that positive test but it isn't going to happen.
I've had some stiffness in my fingers and legs off an on. The first time was~ 5 years ago and I thought it was signs of arthritis or carpel tunnel, eventually it subsided where it didn't bother me much and I forgot about it. This is before my headaches started, BTW. Also, my nerve conduction studies indicated no carpel and rhematologist indicated no arthritis either.
Unfortunately, in the past several months the stiffness feeling is really noticable, and fairly symmetric, especially my finger knuckles. It also seems that I inflame the joint, through some event that shouldn't inflame the joint. I can't explain why my joint hurts, unless it is random pain like much of the rest of my pain.
I took the prednisone couple years ago when my stomach was in 100% good shape, so not sure I would get the same result and it was only a week long trial. My LLMD recommends a 4 mo trial on Antibiotics and eventually migrating to IV if it's neuro so I think it's a serious investment. I keep debating taking another trial of predisone. Keep me posted.
Unfortunately, in the past several months the stiffness feeling is really noticable, and fairly symmetric, especially my finger knuckles. It also seems that I inflame the joint, through some event that shouldn't inflame the joint. I can't explain why my joint hurts, unless it is random pain like much of the rest of my pain.
I took the prednisone couple years ago when my stomach was in 100% good shape, so not sure I would get the same result and it was only a week long trial. My LLMD recommends a 4 mo trial on Antibiotics and eventually migrating to IV if it's neuro so I think it's a serious investment. I keep debating taking another trial of predisone. Keep me posted.
Thanks everyone for the replies.
My rheumatologist, with whom I met for the first time last week, ordered 10 vials worth of blood work so I think I will wait to get those results before I take further action.
I have another quick Q if anyone has time or ideas to share: My stiffness is symmetric, in both hands/wrists, also feet/ankles/knees. The rheumatologist also said she could detect some inflammation and commented on my knuckles starting to fill in (I'm not sure what that means). So my question is, would stiffness/joint problems caused by Lyme show similar very symmetric patterns, and be the worst in the small outer joints? Thanks to anyone who can offer an answer.
jason80, I've bumped into you before on MedHelp. It has only been in the past several weeks that I've had such pronounced joint involvement, which re-awakened the "could it be Lyme?" question in me. I too have stomach issues, but if you managed steroids than I would think you could managed anti-biotics? My reflux actually got better while on steroids. Every single on of my symptoms did. My physician says that is more evidence that Lyme is not behind all of this. However, it gets under my skin that this year + of discomfort may be a very treatable condition. If a doctor offered to try anti-biotics, I'd take them. But again, for now I have a glimmer of hope that the rheumatologist may have some answers. If my new rounds of blood work track down anything, I'll let you know. Best of luck to you, as well.
Thanks!
My rheumatologist, with whom I met for the first time last week, ordered 10 vials worth of blood work so I think I will wait to get those results before I take further action.
I have another quick Q if anyone has time or ideas to share: My stiffness is symmetric, in both hands/wrists, also feet/ankles/knees. The rheumatologist also said she could detect some inflammation and commented on my knuckles starting to fill in (I'm not sure what that means). So my question is, would stiffness/joint problems caused by Lyme show similar very symmetric patterns, and be the worst in the small outer joints? Thanks to anyone who can offer an answer.
jason80, I've bumped into you before on MedHelp. It has only been in the past several weeks that I've had such pronounced joint involvement, which re-awakened the "could it be Lyme?" question in me. I too have stomach issues, but if you managed steroids than I would think you could managed anti-biotics? My reflux actually got better while on steroids. Every single on of my symptoms did. My physician says that is more evidence that Lyme is not behind all of this. However, it gets under my skin that this year + of discomfort may be a very treatable condition. If a doctor offered to try anti-biotics, I'd take them. But again, for now I have a glimmer of hope that the rheumatologist may have some answers. If my new rounds of blood work track down anything, I'll let you know. Best of luck to you, as well.
Thanks!
Sorry for your troubles. The sad reality for us is that the answer you get is purely based on the type of doctor you see. Incredible.
The LLMD will say you probably have Lyme based on symptoms and the ID will state that based on your serology that you don't have it. The IDs don't trust IGNX and the LLMDs only trust IGNX data. I think they are both biased in each of their respective directions (just my opinion).
Who do we believe? The IDs aren't trained in Lyme, whereas the LLMDs are in the extreme minority in their interpretations/protocols. No wonder one can't obtain a convincing answer.
In addition to my usual peripheral neuropathies, I have strange stomach problems and I'm not anxious to go on longterm antibiotics and make my situation worse until I'm fairly confident that I have it. If one has the classic bulls eye, I think it's easier to believe one has it, as opposed to some other mystery illness that might be not bacterial. Not sure how persuasive the bullseye rash is for diagnosis, but I'm sure it matters to the individual.
BTW, I also took stint of predisone for a week and it made my headaches go away. I haven't heard much comment from my Drs about that being much of an indicator one way or another on the disease.
Best of luck in your recovery.
The LLMD will say you probably have Lyme based on symptoms and the ID will state that based on your serology that you don't have it. The IDs don't trust IGNX and the LLMDs only trust IGNX data. I think they are both biased in each of their respective directions (just my opinion).
Who do we believe? The IDs aren't trained in Lyme, whereas the LLMDs are in the extreme minority in their interpretations/protocols. No wonder one can't obtain a convincing answer.
In addition to my usual peripheral neuropathies, I have strange stomach problems and I'm not anxious to go on longterm antibiotics and make my situation worse until I'm fairly confident that I have it. If one has the classic bulls eye, I think it's easier to believe one has it, as opposed to some other mystery illness that might be not bacterial. Not sure how persuasive the bullseye rash is for diagnosis, but I'm sure it matters to the individual.
BTW, I also took stint of predisone for a week and it made my headaches go away. I haven't heard much comment from my Drs about that being much of an indicator one way or another on the disease.
Best of luck in your recovery.
Hi Wonko,
A Western blot from IGeneX would be a good start.
You should also try and get an appointment with an LLMD. Someone from these Lyme support groups could help you find one in your state:
www.lymenet.org/SupportGroups/UnitedStates/Maryland/
Tingling and burning in the face, hands and feet can certainly be symptoms of Lyme: I have those sx myself.
You say that your joint problems started one or two months after taking steroids.
In the fall of 2003, I was given several cortisone injections for an allergic reaction (back then, I did not know I had Lyme). One month later, I started having severe arrhythmia, a problem I had never had before. And two months later, I developed joint problems--I could barely move my arms and hands upon waking up in the morning. I was too stiff and in pain.
I hope you soon find an answer and feel better,
Dora
A Western blot from IGeneX would be a good start.
You should also try and get an appointment with an LLMD. Someone from these Lyme support groups could help you find one in your state:
www.lymenet.org/SupportGroups/UnitedStates/Maryland/
Tingling and burning in the face, hands and feet can certainly be symptoms of Lyme: I have those sx myself.
You say that your joint problems started one or two months after taking steroids.
In the fall of 2003, I was given several cortisone injections for an allergic reaction (back then, I did not know I had Lyme). One month later, I started having severe arrhythmia, a problem I had never had before. And two months later, I developed joint problems--I could barely move my arms and hands upon waking up in the morning. I was too stiff and in pain.
I hope you soon find an answer and feel better,
Dora
reguest a western blot....and see if any bands at all turn up positve. I had a lyme ELSA and it was negative but my doctor ran a western blot as well and one band came up positve, but i had a tick and a rash three months prior to this, so he was going on that information to further test. I am currently on treatment. My neighbor had the MRI and facial palsy and lessions were found and they tested her via western blot and she was positive and put on doxy. Hope this help...just tell them you remember the tick bite and
see if you can get another test ran just to be sure!
Kimberly, VA
see if you can get another test ran just to be sure!
Kimberly, VA
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