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Respiratory Disorders (Expert Forum)
lyme disease
Answered by
MN
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lyme disease
by domzig, Jun 20, 2008 05:10PM
what is all the controversy surrounding Lyme disease and why are doctors not recongnizing symptoms early on?
my daughter became ill in October 07 and after numerous tests and terrible symptoms of costochondritis, gastric bugs, severe head pain, vertigo, fatigue, muscle pain and cramps, stiff neck, photophobia etc and more she has now reached the point of being bed ridden and unable to walk anymore. she is on tramadol for the pain, but after seeing many consultants and lots of different diagnosis including she needs a psychiatrist, i lost hope. i ended up doing a lot of net research and came up with lyme disease, i then took her to see a top proffesor privately who diagnosed her with late stage lyme. she had in depth blood tests sent to the USA which show her to be infected with lyme babesia bartonella and erlichia! she is now very sick she is on long term iv anti biotics (again controversial) but as i am under a top proffesor all be it its costly she is having treatment but because its reached late stage there are no gurantees she wont remain ill forever. can you advice me on this? the Attorney general is investigating the IDSA due to anti trust campaign. so the IDSA in USA may be forced to change there Lyme treatment guidelines, but all this controversy and lack of awareness has not helped by 13 year old daughter. Why are the NHS not recongnizing this illness and treating it early on? i just dont understand with medical advances today how this situation could arise?
my daughter became ill in October 07 and after numerous tests and terrible symptoms of costochondritis, gastric bugs, severe head pain, vertigo, fatigue, muscle pain and cramps, stiff neck, photophobia etc and more she has now reached the point of being bed ridden and unable to walk anymore. she is on tramadol for the pain, but after seeing many consultants and lots of different diagnosis including she needs a psychiatrist, i lost hope. i ended up doing a lot of net research and came up with lyme disease, i then took her to see a top proffesor privately who diagnosed her with late stage lyme. she had in depth blood tests sent to the USA which show her to be infected with lyme babesia bartonella and erlichia! she is now very sick she is on long term iv anti biotics (again controversial) but as i am under a top proffesor all be it its costly she is having treatment but because its reached late stage there are no gurantees she wont remain ill forever. can you advice me on this? the Attorney general is investigating the IDSA due to anti trust campaign. so the IDSA in USA may be forced to change there Lyme treatment guidelines, but all this controversy and lack of awareness has not helped by 13 year old daughter. Why are the NHS not recongnizing this illness and treating it early on? i just dont understand with medical advances today how this situation could arise?
Doctor's Answer
by National Jewish Health, Jun 27, 2008 12:05PM
, Jun 27, 2008 12:05PM
Your anger and frustration is understandable and we have no answer to your question, "Why are the National Health Service (NHS) not recognizing this illness and treating it early on?” Yours is indeed a tragic situation. The doctors who saw your daughter and were unable to make the diagnosis should be the people best able to provide an explanation. When a diagnosis is late in coming it is often because 1) the presenting symptoms are atypical and their significance becomes clear only in retrospect, or 2) when the illness occurs in a part of the country where Lyme disease is non-endemic or rarely seen.
Most importantly you have done your part, as a staunch advocate for your daughter, including your having arranged for her to be under the care a practitioner, expert in the diagnosis and treatment of this disease. If you haven't already done so, you should pose your question to this doctor. If you have not already done so, you might want to become active in the Lyme Disease Network at http://www.lymenet.org/ and/or the Lyme Disease Foundation http://www.lyme.org/. Equally or even more important would be actions you could take locally, where one person can often accomplish a lot to heighten sensitivity to the diagnosis of Lyme disease among the medical community. For example you could work with the local Medical Society and/or a group of local infectious disease specialists to sponsor a Lyme disease awareness day or week. With these doctors, you could work to set up a dinner meeting or even a half-day seminar at the largest local hospital, with continuing medical education (CME) credit for the attendees. The seminar speakers could include your daughter's current doctor caregiver and a couple of other speakers, possibly to include a representative of the Infectious Diseases Society of America (IDSA) and the Attorney General of Connecticut.
Your loving care has surely made a difference in your daughter's life. Further efforts, such as the above, by sparing others from the agony you and she have suffered could make a huge difference in their lives.
Good luck.
Most importantly you have done your part, as a staunch advocate for your daughter, including your having arranged for her to be under the care a practitioner, expert in the diagnosis and treatment of this disease. If you haven't already done so, you should pose your question to this doctor. If you have not already done so, you might want to become active in the Lyme Disease Network at http://www.lymenet.org/ and/or the Lyme Disease Foundation http://www.lyme.org/. Equally or even more important would be actions you could take locally, where one person can often accomplish a lot to heighten sensitivity to the diagnosis of Lyme disease among the medical community. For example you could work with the local Medical Society and/or a group of local infectious disease specialists to sponsor a Lyme disease awareness day or week. With these doctors, you could work to set up a dinner meeting or even a half-day seminar at the largest local hospital, with continuing medical education (CME) credit for the attendees. The seminar speakers could include your daughter's current doctor caregiver and a couple of other speakers, possibly to include a representative of the Infectious Diseases Society of America (IDSA) and the Attorney General of Connecticut.
Your loving care has surely made a difference in your daughter's life. Further efforts, such as the above, by sparing others from the agony you and she have suffered could make a huge difference in their lives.
Good luck.
