Aa
Good news/bad news...
Hey all,
The good news is I listened to you and found a lyme literate Doc (she even takes ins.) The bad news is apparently I'm sicker then I thought, or wanted to believe. She says it's in my brain causing many neurological symptoms, numbness in my hands and legs, vision.... She took a lot of blood, changed me from doxy to Minocycline m-w-f until lab results come back. Yesterday, she emailed saying I'm neg for Anaplasma and Erlichia. "There is one bacterial opportunistic infection the will just help me decide treatment plan. I want to know how you are doing before I change anything up, so let me know." Of coarse I emailed right back but haven't heard anything. I can't figure out if she means I have a bacterial infection or she is waiting for lab results to see. Today I'm feeling like crap. Sorry to dump, but I'm glad you were all here to guide me in the right direction.
The good news is I listened to you and found a lyme literate Doc (she even takes ins.) The bad news is apparently I'm sicker then I thought, or wanted to believe. She says it's in my brain causing many neurological symptoms, numbness in my hands and legs, vision.... She took a lot of blood, changed me from doxy to Minocycline m-w-f until lab results come back. Yesterday, she emailed saying I'm neg for Anaplasma and Erlichia. "There is one bacterial opportunistic infection the will just help me decide treatment plan. I want to know how you are doing before I change anything up, so let me know." Of coarse I emailed right back but haven't heard anything. I can't figure out if she means I have a bacterial infection or she is waiting for lab results to see. Today I'm feeling like crap. Sorry to dump, but I'm glad you were all here to guide me in the right direction.
That protocol is certainly different!
" Unfortunately, she didn't answer any questions I asked like what my lab tests showed."
You're entitled to get a copy of your lab reports. I don't remember if we (here) had told you that or not. If you didn't, then ask the office to send you a copy. (The lab can't and won't)
A doctor that doesn't answer my questions is a doctor that may not be the best one for me.
If you got a rash from Flagyl before then you should definitely ask your doctor if you should take it again----and remind her of the rash, in case she doesn't remember. It could mean something serious---- but it could also be 'just a rash' that will go away.
My personal opinion? I'd wait until I heard from the doctor about Flagyl.
" Unfortunately, she didn't answer any questions I asked like what my lab tests showed."
You're entitled to get a copy of your lab reports. I don't remember if we (here) had told you that or not. If you didn't, then ask the office to send you a copy. (The lab can't and won't)
A doctor that doesn't answer my questions is a doctor that may not be the best one for me.
If you got a rash from Flagyl before then you should definitely ask your doctor if you should take it again----and remind her of the rash, in case she doesn't remember. It could mean something serious---- but it could also be 'just a rash' that will go away.
My personal opinion? I'd wait until I heard from the doctor about Flagyl.
I use to get hives from sulfa 15 years ago which was probably because of the Lyme I didn't know I had. I started taking it again recently with no problems.
So finally heard from the doc with new treatment plan: Omnicef 300mg 2 caps 2x/day M-W-F (with Minocycline for 2 weeks, Flagyl 500mg 1 2x/day on thurs. and fri of 2nd week. Nystatin 1 2x/day. Then off everything for 2 weeks. Unfortunately, she didn't answer any questions I asked like what my lab tests showed. Does this make any sense to anyone out there? When I went to pick up the meds the pharmacist said I had a rash from Flagyl in 2004. Not sure if I should try it anyway. I emailed the doc with this question, but of course no reply... I thought e-mail would be a great way to communicate with the doc but at least on the phone they answer what you ask! I know it's only been a few months but this is getting really old.
"Boy this is scary stuff. Anyone know of any good videos, movies or books I should see/read. "
I'm not sure if you're asking for good videos/books/movies that will explain your specific problems. If you are, I haven't heard of them.
If you want something that will give a positive outlook for your specific problems I haven't heard of them either. Sorry.
I think a positive outlook will come from the people here. They're good at that.
Ricobord has posted a lot of mostly excellent information in this forum. You might want to read all her posts. But they may not be specific to your symptoms.
If you're asking for media that will explain the true facts about Lyme then there's two that jump to mind immediately: the books Cure Unknown by Pam Weintraub and Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders
by Karen Vanderhoof-Forschner. Your library will probably have both.
I'd stay away from most YouTube videos. LOL There ARE a few good ones----- but there are even more that present completely false information.
I live by the credo that the more information I have the better off I'll be. That information may not cure me but it sure makes all the 'scary' things a little less scary.
I'm not sure if you're asking for good videos/books/movies that will explain your specific problems. If you are, I haven't heard of them.
If you want something that will give a positive outlook for your specific problems I haven't heard of them either. Sorry.
I think a positive outlook will come from the people here. They're good at that.
Ricobord has posted a lot of mostly excellent information in this forum. You might want to read all her posts. But they may not be specific to your symptoms.
If you're asking for media that will explain the true facts about Lyme then there's two that jump to mind immediately: the books Cure Unknown by Pam Weintraub and Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders
by Karen Vanderhoof-Forschner. Your library will probably have both.
I'd stay away from most YouTube videos. LOL There ARE a few good ones----- but there are even more that present completely false information.
I live by the credo that the more information I have the better off I'll be. That information may not cure me but it sure makes all the 'scary' things a little less scary.
Thanks for the input. I'm not sure what lab my doc is using but will ask. I think I remember her saying she wasn't going to test for all the co-infections because some were to expensive and they gave false negatives to often. She said she would treat my symptoms with up to 5 abx. spaced out during the month. She also said depending on how things go IV 3x/wk may work for me. I sure hope it doesn't come to that. She told me about lyme literate eye doctor and lyme literate cardiologist she may want me to see. I guess my heart was doing a little extra something at the end of the beat. Anyone have that? And did it go away with treatment? Boy this is scary stuff. Anyone know of any good videos, movies or books I should see/read. Or maybe I should sit back and research on a need to know bases. Or just ask you guys! Thanks
So glad you found a doc to take you seriously! Glad to hear you're negative for Anaplasma and Ehrlichia. That's good. With the neuro symptoms, you'll need specific meds to get at it.
Just know that testing for Babesia and Bartonella can be false negative. I was "not negative" for Bartonella antibodies at IGeneX. I would have been "negative" at any other lab as my antibody levels weren't high enough to hit the official positive. (I definitely have Bartonella.) I was false negative for Babesia on 3 different tests. I finally got a clinical diagnosis nearly a year later.
Minocycline is an intracellular abx and can help with both Lyme and Bartonella, but a lot of people struggle with dizziness as a side effect.
Sometimes Babesia and Bartonelaa need to be diagnosed just on symptoms. I read one guy's story where he just wasn't getting better on Lyme treatment for almost a year. His doc gave him Levaquin even though he didn't have any Bartonella-unique symptoms (there's lots of overlap between Bart & Lyme symptoms), and he started feeling better within a couple weeks.
If you test negative on either or both, don't dismiss them completely. Remember them later if your recovery seems too slow. Hang in there. Treatment can be tedious and it often isn't a linear process.
Just know that testing for Babesia and Bartonella can be false negative. I was "not negative" for Bartonella antibodies at IGeneX. I would have been "negative" at any other lab as my antibody levels weren't high enough to hit the official positive. (I definitely have Bartonella.) I was false negative for Babesia on 3 different tests. I finally got a clinical diagnosis nearly a year later.
Minocycline is an intracellular abx and can help with both Lyme and Bartonella, but a lot of people struggle with dizziness as a side effect.
Sometimes Babesia and Bartonelaa need to be diagnosed just on symptoms. I read one guy's story where he just wasn't getting better on Lyme treatment for almost a year. His doc gave him Levaquin even though he didn't have any Bartonella-unique symptoms (there's lots of overlap between Bart & Lyme symptoms), and he started feeling better within a couple weeks.
If you test negative on either or both, don't dismiss them completely. Remember them later if your recovery seems too slow. Hang in there. Treatment can be tedious and it often isn't a linear process.
No worries, we like to hear updates.
You might forward your last email to the doc again on Monday and say 'Just following up from last week'. Your doc sounds like she's on top of things, and proactive. That's great!
Keep us posted. I know it's hard to wait through the weekend, but it's half over already. Hang on. Keep us posted!
You might forward your last email to the doc again on Monday and say 'Just following up from last week'. Your doc sounds like she's on top of things, and proactive. That's great!
Keep us posted. I know it's hard to wait through the weekend, but it's half over already. Hang on. Keep us posted!
I am glad you found an LLMD. I have Neuro Lyme and from an MRI found I had lesions on my brain from a co-infection of Lyme called Bartonella. You may have that infection and minocycline is often used for Bart's.
Do you know if the tests were taken at IgeneX labs?
Things do improve with treatment so I am glad you will be on your way soon.
Do you know if the tests were taken at IgeneX labs?
Things do improve with treatment so I am glad you will be on your way soon.
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