Aa
Has anyone been treated for Lyme without official diagnosis from tets?
I tested positive on an initial Lyme disease test...when I took further Western Blot all bands came back negative...then when I took Igenex test and co infections all came back negative. Yet, my LLMD still saying it is very possible I "could" have Lyme disease...after telling me all the side effects that could come from taking "therapeutic" antibiotics...he asked me how I felt about doing them??? I don't know what to do! My psych. and doc also think all symptoms could also be attributed to anxiety and depression....I am totally unsure of what to do. Can anyone help shed light on this? has anyone taken the antibiotics for Lyme without official diagnosis??? I just don't have the energy to list my symptoms but if you click on my profile/posts you can see....THANK YOU for reading
Oops, hit submit before I was done with my thought. I also wanted to add that switching to part time helped me immensely, I don't think I could have improved as much if I had continued to try and work full time.
Once I was working less, I really appreciated how exhausting it was for me to even just be at my desk for that long, let along actually get any work done. I was able to focus much more on diet and exercise, which I also think helped me along the way.
Once I was working less, I really appreciated how exhausting it was for me to even just be at my desk for that long, let along actually get any work done. I was able to focus much more on diet and exercise, which I also think helped me along the way.
I had to reduce my workload to part time for about a year at the onset of my treatment. It was also only owing to the nature of my work and position that I could even pull off the part time.
It varies from person to person, I'm sure some can stay actively employed but for me I was too exhausted and symptomatic to do so. I didn't try to get any sort of disability or assistance as I was able to get by on reduced wages. I didn't even need to supply a detailed reason to switch from full to part time. I was pretty lucky in that regard.
It varies from person to person, I'm sure some can stay actively employed but for me I was too exhausted and symptomatic to do so. I didn't try to get any sort of disability or assistance as I was able to get by on reduced wages. I didn't even need to supply a detailed reason to switch from full to part time. I was pretty lucky in that regard.
thanks for answering all of you...I still am not sure what to do. I started zoloft and trazadone (for sleep) 3 wks ago...so LLMD thinks maybe give these medications a fair time to work...I am having major doubts that my condition can only be attributed to anxiety and depression..even though I've been prone to those things in the past. I guess my other question is were all of you able to work while being treated for Lyme? I was barely able to get through the last few wks of teaching before the summer,,,
Hi back at you --
Sorry, I don't recall if you were tested for co-infections. Anything there?
And some LLMDs would treat longer than 7 months ....
Sorry, I don't recall if you were tested for co-infections. Anything there?
And some LLMDs would treat longer than 7 months ....
Hi there... 7 ELISA tests, all negative except for one Indeterminate. False-Positive according to CDC on western blot... also had a western blot in ontario, which came back negative (they did not enlocse the positive or false bands.)
I was treated for 7 months. still have lingering problems.
I was treated for 7 months. still have lingering problems.
I had mostly negative Lyme testing: Several negative ELISA's, negative for Lyme in my spinal fluid, and my only western blot (done by Igenex) showed only 2 bands.
As noted above, Lyme is a clinical diagnosis. In addition to Lyme testing, I was tested for just about everything under the sun, and had no definitive results. The lack of positive testing for other conditions helped my LLMD make a clinical diagnosis of Lyme in my case.
Often, Lyme doctors who make a clinical diagnosis will use the patient response to antibiotics to further confirm (or dismiss) Lyme. Many Lyme patients experience a Herxheimer reaction to antibiotics, in which the die-off of the spiral-shaped bacteria causes a worsening in symptoms. This type of response is only associated with a couple infections, so it is highly indicative of Lyme disease.
Telling you all of the possible risks and side effects of antibiotics is probably your doctor's way of covering his tracks and making sure that you understand the pros and cons of treatment. As with any medication, you need to assess the potential risks versus the potential benefits. Many with Lyme feel that the potential risk of antibiotics is small compared to the potential benefits of treating/eradicating Lyme disease. But you'll need to make that call for yourself.
While treating without more definitive testing results may be unusual for Lyme treatment from mainstream medicine, I would say that it is not an unusual practice for ILADS or other non-IDSA style Lyme doctors. The testing is a highly controversial subject, as indicated above. The criteria for a positive result was established for tracking known cases, not for identifying new ones, and is therefore (in the opinion of many) far too strict. Some specialty labs (such as Igenex) have more broad testing criteria, and many doctors have more broad diagnostic criteria.
I was very skeptical at the outset of my treatment, as my tests seemed dead cold for Lyme. It took time to read more about it, speak with other patients (online for me, but there are live support groups in many regions you could also look into_, and my response to treatment to accept and better understand my situation.
As noted above, Lyme is a clinical diagnosis. In addition to Lyme testing, I was tested for just about everything under the sun, and had no definitive results. The lack of positive testing for other conditions helped my LLMD make a clinical diagnosis of Lyme in my case.
Often, Lyme doctors who make a clinical diagnosis will use the patient response to antibiotics to further confirm (or dismiss) Lyme. Many Lyme patients experience a Herxheimer reaction to antibiotics, in which the die-off of the spiral-shaped bacteria causes a worsening in symptoms. This type of response is only associated with a couple infections, so it is highly indicative of Lyme disease.
Telling you all of the possible risks and side effects of antibiotics is probably your doctor's way of covering his tracks and making sure that you understand the pros and cons of treatment. As with any medication, you need to assess the potential risks versus the potential benefits. Many with Lyme feel that the potential risk of antibiotics is small compared to the potential benefits of treating/eradicating Lyme disease. But you'll need to make that call for yourself.
While treating without more definitive testing results may be unusual for Lyme treatment from mainstream medicine, I would say that it is not an unusual practice for ILADS or other non-IDSA style Lyme doctors. The testing is a highly controversial subject, as indicated above. The criteria for a positive result was established for tracking known cases, not for identifying new ones, and is therefore (in the opinion of many) far too strict. Some specialty labs (such as Igenex) have more broad testing criteria, and many doctors have more broad diagnostic criteria.
I was very skeptical at the outset of my treatment, as my tests seemed dead cold for Lyme. It took time to read more about it, speak with other patients (online for me, but there are live support groups in many regions you could also look into_, and my response to treatment to accept and better understand my situation.
Welcome to MedHelp Lyme --
The confusing situation you find yourself in is regrettably common to many of us.
It sounds like your MD did first an ELISA test, and if that comes back positive, as yours did, then a second confirming test (called Western blot) is done (because ELISA has a high rate of false positives, and Western blot has a high rate of false negatives, so the two are supposed to cancel out each other's weaknesses). (A rather good explanation of the testing is given in wikipedia under the topic Lyme Disease, including explaining their weaknesses.) Whether the test results are positive or negative, however, they are not supposed to be relied upon as the sole determinant of infection or its lack: there are too many reasons the tests can be and are inaccurate.
A Lyme diagnosis is properly made 'clinically', meaning based on symptoms, and the tests are potentially helpful additional information, but the tests are not the last word. That is, I suspect, why your MD is "still saying it is very possible I 'could' have Lyme disease."
It is a judgment call, and I can understand that that is a hard decision to make. You could ask your MD what he would do if these were his own test results -- would he treat or not? That might give you an extra data point that could tell you his true inclinations.
Please understand that MDs can be under pressure NOT to diagnose Lyme disease, especially in some states where the medical boards are hostile to Lyme diagnosis, which can threaten an MD recommending Lyme treatment with loss of his/her medical license. You may be in one of those states, which is why he asked you how you feel about taking abx.
You also say: "My psych. and doc also think all symptoms could also be attributed to anxiety and depression." Anxiety and depression are side effects of Lyme, as well as of other things, but MDs who don't 'believe' in Lyme are inclined to interpret anxiety and depression as psychological and not the result of real chemical and biologicial effects of Lyme. I can tell you from personal experience that Lyme messes with your brain and your emotions in an amazing way, and I am not the only one who has experienced that.
Have you been tested for co-infections carried by the same ticks as Lyme? Co-infections contribute their own strange symptoms and require different testing and often different treatment from that for Lyme. Some of the common coinfections are babesiosis, bartonella and ehrlichiosis.
I would suggest another discussion with your Lyme MD. The tests are not a simple yes/no -- it is a judgment call, and you need good medical advice to make your own decision. I took antibiotic treatment, and I do not regret it at all, even though I had some unfortunate and relatively uncommon reaction to the meds. I am much better than I was and still working toward a cure.
I remember that awful feeling of being so sick and not knowing what to do or who to trust. Unfortunately, there is no easy answer, but your MD sounds like he has an open and encouraging approach. Best wishes to you -- let us know what you decide and how it goes.
The confusing situation you find yourself in is regrettably common to many of us.
It sounds like your MD did first an ELISA test, and if that comes back positive, as yours did, then a second confirming test (called Western blot) is done (because ELISA has a high rate of false positives, and Western blot has a high rate of false negatives, so the two are supposed to cancel out each other's weaknesses). (A rather good explanation of the testing is given in wikipedia under the topic Lyme Disease, including explaining their weaknesses.) Whether the test results are positive or negative, however, they are not supposed to be relied upon as the sole determinant of infection or its lack: there are too many reasons the tests can be and are inaccurate.
A Lyme diagnosis is properly made 'clinically', meaning based on symptoms, and the tests are potentially helpful additional information, but the tests are not the last word. That is, I suspect, why your MD is "still saying it is very possible I 'could' have Lyme disease."
It is a judgment call, and I can understand that that is a hard decision to make. You could ask your MD what he would do if these were his own test results -- would he treat or not? That might give you an extra data point that could tell you his true inclinations.
Please understand that MDs can be under pressure NOT to diagnose Lyme disease, especially in some states where the medical boards are hostile to Lyme diagnosis, which can threaten an MD recommending Lyme treatment with loss of his/her medical license. You may be in one of those states, which is why he asked you how you feel about taking abx.
You also say: "My psych. and doc also think all symptoms could also be attributed to anxiety and depression." Anxiety and depression are side effects of Lyme, as well as of other things, but MDs who don't 'believe' in Lyme are inclined to interpret anxiety and depression as psychological and not the result of real chemical and biologicial effects of Lyme. I can tell you from personal experience that Lyme messes with your brain and your emotions in an amazing way, and I am not the only one who has experienced that.
Have you been tested for co-infections carried by the same ticks as Lyme? Co-infections contribute their own strange symptoms and require different testing and often different treatment from that for Lyme. Some of the common coinfections are babesiosis, bartonella and ehrlichiosis.
I would suggest another discussion with your Lyme MD. The tests are not a simple yes/no -- it is a judgment call, and you need good medical advice to make your own decision. I took antibiotic treatment, and I do not regret it at all, even though I had some unfortunate and relatively uncommon reaction to the meds. I am much better than I was and still working toward a cure.
I remember that awful feeling of being so sick and not knowing what to do or who to trust. Unfortunately, there is no easy answer, but your MD sounds like he has an open and encouraging approach. Best wishes to you -- let us know what you decide and how it goes.
Hi: ISo sorry you are feeling terrible. I was given amoxicillin antibiotic upon seeing the doctor for the first time three days ago. I was bitten by something (i think now a deer tick) on my lower stomach about 3 to 4 weeks ago. About a week after that I developed a pinkish rash that continued to grow until it covered my lower abdomen. It looked like the size of a football. I was extremely tired, no energy, could not catch my breath, dizzy, alot of anxiety, had migrane headaches and just felt like my body was sick. When I went to the doctor, they said the rash looked like a lyme rash and gave me antibiotic (amoxicillin) 3 times a day for three weeks. They took my blood also, Still waiting for the results but they told me it probably will not show up yet but the really did feel it was lymes. Did you take antibiotics at all? I have to say I do feel a little better, not back to normal, but do feel better with just a couple of days of antibiotics. I hope this post helps you in some way. Hope you feel better soon.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
