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What Is Post Treatment Lyme Disease Syndrome?
Question: Hello, again, Dr. XXXXXXX
Thank you again for helping me identify some bug bites. I have some more health questions and I hope you can help me!
It is regarding Post Treatment Lyme Disease Syndrome (PTLDS) & co-infections with Lyme Disease.
Some background information: I was diagnosed with Lyme disease about 4-5 years ago. There is a marked decline in my functioning after the treatment for the Lyme disease (CDC recommended 30 days on doxycycline) - And, it still effects my ability to go to work, school, and be social. I'm constantly tired (fatigue) & I suspect the condition is also worsening my other psychiatric conditions (anxiety, depression, executive functioning).
When my doctor tested for Lyme 5 years ago the IgG was negative but the IgM was positive. (This was a bit concerning & made us suspect not Lyme but an autoimmune disorder). But then the Western Blot for Lyme was positive. My research told me that the negative IgG probably means I had the Lyme for a long time (https://labtestsonline.org/understanding/analytes/lyme/tab/test/).
I continue to do research to eliminate other possible reasons for my condition. So far my doctors ruled out any thyroid problems, diabetes, and rheumatoid arthritis. A recent blood test showed that my hemoglobin(?) count was on the low side of normal/high side of low (<12 g/dL) which got me thinking about Lyme disease co-infections.
It seems most co-infections (bartonella, erlichia, Q fever) would have been treated with the doxycycline with a couple of exceptions. One that caught my eye was babesiosis - in addition to being related to Lyme, some of the symptoms for the disease that fit are headaches, muscle & joint pains, emotional lability, depression, and retinopathy (2 years ago my eye exam was normal, early this year - January 2016 - I had laser surgery for macular holes), and so on.
My question is 2 fold:
(1) When I asked my PCP about the possibility of babesiosis, she said that 3 years ago - so about 2 to 3 after the Lyme disease treatment - the *follow up* Lyme Western Blot came back negative, so there is no need for an additional test for co-infections. Does the Lyme Western Blot also test for co-infections like babesiosis, or does the Western Blot need to be specific tagged to each disease? Or, would late stage (mostly asymptomatic) babesiosis need another kind of test/specialized test all together (http://www.aafp.org/afp/2001/0515/p1969.html)?
(2) What is the probability that the lower hemoglobin count could be (hemolytic?) anemia if the rest of the counts in that serologic test were normal?
Thank you!
Thank you again for helping me identify some bug bites. I have some more health questions and I hope you can help me!
It is regarding Post Treatment Lyme Disease Syndrome (PTLDS) & co-infections with Lyme Disease.
Some background information: I was diagnosed with Lyme disease about 4-5 years ago. There is a marked decline in my functioning after the treatment for the Lyme disease (CDC recommended 30 days on doxycycline) - And, it still effects my ability to go to work, school, and be social. I'm constantly tired (fatigue) & I suspect the condition is also worsening my other psychiatric conditions (anxiety, depression, executive functioning).
When my doctor tested for Lyme 5 years ago the IgG was negative but the IgM was positive. (This was a bit concerning & made us suspect not Lyme but an autoimmune disorder). But then the Western Blot for Lyme was positive. My research told me that the negative IgG probably means I had the Lyme for a long time (https://labtestsonline.org/understanding/analytes/lyme/tab/test/).
I continue to do research to eliminate other possible reasons for my condition. So far my doctors ruled out any thyroid problems, diabetes, and rheumatoid arthritis. A recent blood test showed that my hemoglobin(?) count was on the low side of normal/high side of low (<12 g/dL) which got me thinking about Lyme disease co-infections.
It seems most co-infections (bartonella, erlichia, Q fever) would have been treated with the doxycycline with a couple of exceptions. One that caught my eye was babesiosis - in addition to being related to Lyme, some of the symptoms for the disease that fit are headaches, muscle & joint pains, emotional lability, depression, and retinopathy (2 years ago my eye exam was normal, early this year - January 2016 - I had laser surgery for macular holes), and so on.
My question is 2 fold:
(1) When I asked my PCP about the possibility of babesiosis, she said that 3 years ago - so about 2 to 3 after the Lyme disease treatment - the *follow up* Lyme Western Blot came back negative, so there is no need for an additional test for co-infections. Does the Lyme Western Blot also test for co-infections like babesiosis, or does the Western Blot need to be specific tagged to each disease? Or, would late stage (mostly asymptomatic) babesiosis need another kind of test/specialized test all together (http://www.aafp.org/afp/2001/0515/p1969.html)?
(2) What is the probability that the lower hemoglobin count could be (hemolytic?) anemia if the rest of the counts in that serologic test were normal?
Thank you!
Brief Answer:
specific testing needed
Detailed Answer:
Helllo again and thanks for the follow up.
Babesiosis is rare but something that probably needs to be ruled out in your case. You may need to see an infectious disease specialist for this instead of your PCP. You are not in a high risk area for this infection but it is possible in your region.
To answer your first question, you do need specific tests for babesiosis, it is usually done by blood smear and sometimes multiples are needed. Other types of tests like serologic tests are also available but not commonly used since it is so rare but may be needed if it is late stage. Again, an infectious disease specialist may be the best person to determine the specific tests needed in your case.
There are many reasons for a low hemoglobin count but a simple blood test called a haptoglobin could rule out hemolytic anemia. You should also have an iron, ferritin, reticulocyte count, B12, folate and blood smear done to find the definite cause of the anemia.
I wish you the best and hope that you are feeling better soon. I strongly recommend that you see an infectious disease specialist to sort this out and help you find the answers you need.
Dr. Robinson
specific testing needed
Detailed Answer:
Helllo again and thanks for the follow up.
Babesiosis is rare but something that probably needs to be ruled out in your case. You may need to see an infectious disease specialist for this instead of your PCP. You are not in a high risk area for this infection but it is possible in your region.
To answer your first question, you do need specific tests for babesiosis, it is usually done by blood smear and sometimes multiples are needed. Other types of tests like serologic tests are also available but not commonly used since it is so rare but may be needed if it is late stage. Again, an infectious disease specialist may be the best person to determine the specific tests needed in your case.
There are many reasons for a low hemoglobin count but a simple blood test called a haptoglobin could rule out hemolytic anemia. You should also have an iron, ferritin, reticulocyte count, B12, folate and blood smear done to find the definite cause of the anemia.
I wish you the best and hope that you are feeling better soon. I strongly recommend that you see an infectious disease specialist to sort this out and help you find the answers you need.
Dr. Robinson
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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