I could cry bcz seeing doctors that listen after a positive Lymes in a Titer test. But no one I see understands. They dont get I cant control how this is affecting me physically and mentally. Knowing some are being helped gives me hope. But at my age it's prob too late. Plus my diagnoses have gotten difficult. Please keep going until theres a cure for this
I have been trying to get diagnosed after deer tick bite and bullseye rash but my Lyme test has been negative no Lyme titers on western blot at All 0 10 tests 8 years.
Stony brook university hospital tick. Or e disease research center Long Island ny is research center that diagnosed me but that isn’t publicly recognized bacause it’s research center.till this day I’m unreported and publicly undiagnosed veterans hospital still denies diagnosis till know my mri is bad.
What are your recommendations to find doctors who are willing to help treat patients here in the US? Access to testing is almost impossible and treatment is complicated after getting a positive diagnosis. We were able to get a doctor in Belgium but he no longer can come to the US so we have to find someone to work with him to help us. My husband has a strain that was only detected through a specific test in Belgium because labs here don’t do it. It’s very expensive. Me and my children had to send out our bloodwork to test for the positive tests that he has and are still waiting for results it’s ridiculous to go through this. People we know that possibly have this have no access to testing and treatments unless they go through the hell we have had to go through to finally get diagnosed. It’s wrong to not have this being taken seriously. According to our Belgian dr, he said that my husband transmitted it to me and I have birth to my children with it. He has Borrelia Miyamotoi and Babesia. He has been getting treated but I have not seen any improvements as of yet. None at all. Very discouraging
We hear you. Finding a good Lyme or tick-borne disease doctor can be tricky. You might try out our Medical Provider Search. Enter your zip code to find options near you. Visit our website to get started: projectlyme.org/providers-landing/
@@carahurley1I am so sorry I havne't been on youtube to see all the replies. You need to see dr Kenny DeMerlier. Yes he has been on the controversial list of doctors, but ONLY because he is passionate about helping his patients who have this awful disease. GO SEE HIM! Himmunitas clinic in Belgium. He will have the correct tests done at RED labs and you will be able to get a diagnoses and also access to him to treat you. MUCH LOVE and HOPE to you!!! I am so sorry for all of us suffering with this horrible sickness and feeling no help for it. Hang in there!
We need fda approved diagnostic test before this can be taken further we have to start and stop there or we are doing injustice to patient and disease support duke university they have good diagnostic and treatment using pet scan to see the infection doesn’t get better than that.
The only way to get the 20 different strains of Borrelia is by having the phelix phage testing. The co-infections that you probably have as well can be done in the US at Igenex. You will need to see a highly experienced doctor to have these tests done and you will also be paying lots of money for them. My doctor is amazing and has been doing this research and treatment for over 40 years but he is in Belgium and hard to get to from here. Hopefully he will be able to get places like Duke and Stony brook to work with him so he can get this testing here. Hopefully it will one day be mainstream testing and then doctors can learn how to treat their patients the was he does and that we will all have easy access to get ourselves better because once it's chronic, it a long long road to wellness.
Phenomenal panel, thank you!!
I could cry bcz seeing doctors that listen after a positive Lymes in a Titer test. But no one I see understands. They dont get I cant control how this is affecting me physically and mentally. Knowing some are being helped gives me hope. But at my age it's prob too late. Plus my diagnoses have gotten difficult. Please keep going until theres a cure for this
I have been trying to get diagnosed after deer tick bite and bullseye rash but my Lyme test has been negative no Lyme titers on western blot at All 0 10 tests 8 years.
Stony brook university hospital tick. Or e disease research center Long Island ny is research center that diagnosed me but that isn’t publicly recognized bacause it’s research center.till this day I’m unreported and publicly undiagnosed veterans hospital still denies diagnosis till know my mri is bad.
What are your recommendations to find doctors who are willing to help treat patients here in the US? Access to testing is almost impossible and treatment is complicated after getting a positive diagnosis. We were able to get a doctor in Belgium but he no longer can come to the US so we have to find someone to work with him to help us. My husband has a strain that was only detected through a specific test in Belgium because labs here don’t do it. It’s very expensive. Me and my children had to send out our bloodwork to test for the positive tests that he has and are still waiting for results it’s ridiculous to go through this. People we know that possibly have this have no access to testing and treatments unless they go through the hell we have had to go through to finally get diagnosed. It’s wrong to not have this being taken seriously. According to our Belgian dr, he said that my husband transmitted it to me and I have birth to my children with it. He has Borrelia Miyamotoi and Babesia. He has been getting treated but I have not seen any improvements as of yet. None at all. Very discouraging
We hear you. Finding a good Lyme or tick-borne disease doctor can be tricky. You might try out our Medical Provider Search. Enter your zip code to find options near you. Visit our website to get started:
projectlyme.org/providers-landing/
What lab was user in Belgium please. Im in Ireland. Only used Armin labs Germany. Not that accurate... many thanks and best wishes.
What lab was user in Belgium please. Im in Ireland. Only used Armin labs Germany. Not that accurate... many thanks and best wishes.
What lab was user in Belgium please. Im in Ireland. Only used Armin labs Germany. Not that accurate... many thanks and best wishes.
@@carahurley1I am so sorry I havne't been on youtube to see all the replies. You need to see dr Kenny DeMerlier. Yes he has been on the controversial list of doctors, but ONLY because he is passionate about helping his patients who have this awful disease. GO SEE HIM! Himmunitas clinic in Belgium. He will have the correct tests done at RED labs and you will be able to get a diagnoses and also access to him to treat you. MUCH LOVE and HOPE to you!!! I am so sorry for all of us suffering with this horrible sickness and feeling no help for it. Hang in there!
We need fda approved diagnostic test before this can be taken further we have to start and stop there or we are doing injustice to patient and disease support duke university they have good diagnostic and treatment using pet scan to see the infection doesn’t get better than that.
The only way to get the 20 different strains of Borrelia is by having the phelix phage testing. The co-infections that you probably have as well can be done in the US at Igenex. You will need to see a highly experienced doctor to have these tests done and you will also be paying lots of money for them. My doctor is amazing and has been doing this research and treatment for over 40 years but he is in Belgium and hard to get to from here. Hopefully he will be able to get places like Duke and Stony brook to work with him so he can get this testing here. Hopefully it will one day be mainstream testing and then doctors can learn how to treat their patients the was he does and that we will all have easy access to get ourselves better because once it's chronic, it a long long road to wellness.