Aa
Now what next?
Hi,
I got diagnosed with Lyme on the 25 of June this year, and have not gotten to a doctor yet that felt comfortable starting treatment. I am going into an infectious disease/internal medicine doctor on July 15th. But I feel that I need to be more prepared. I know that antibiotics are the treatment and most are on Doxy but I haven't been tested for co-infections yet and dont know if that would change the treatment. I am in Yuma Arizona and there are basically NO cases of Lyme down here so the more I come to the appointment knowing the better.
What treatment plan did your doctor start you on?
Mine is more than likely chronic in the later stage.
I got diagnosed with Lyme on the 25 of June this year, and have not gotten to a doctor yet that felt comfortable starting treatment. I am going into an infectious disease/internal medicine doctor on July 15th. But I feel that I need to be more prepared. I know that antibiotics are the treatment and most are on Doxy but I haven't been tested for co-infections yet and dont know if that would change the treatment. I am in Yuma Arizona and there are basically NO cases of Lyme down here so the more I come to the appointment knowing the better.
What treatment plan did your doctor start you on?
Mine is more than likely chronic in the later stage.
Wow I didn't know there was a lot of lyme here. Or maybe I'm just too close to Mexico cuz there is only one doc that I have found that will treat lyme and it's an ID not even a LLMD. We will see, I have my appointment in an hour so I hope it goes good. I haven't been tested for the coinfections so I suppose thats the next step, huh. If this doc dont work out I'll go to california, San Diego to the Naval base.
Wish me luck!
Wish me luck!
hey there, hope all is well, i just thought i would mention that there are actually alot of people in arizona with lyme disease. try illiads. im not shure if it is .com or what. but just an fyi because the weather is more stable so people flock there and califonia with illnesses. also, if you haven't had symtoms a long time, your major battle with this may not be to long. i hope thats the case! good luck girl, god bless
If it makes you feel any better, I would guess that most of us on this site have the same issues of money vs health, which gets tangled up in work/job, family, and insurance.
My #1 priority is getting well; everything else is done pretty much in support of that, because without my health, the rest of it ain't happening as it should.
It's hard to think this stuff through sometimes, but figure out the money and talk to your folks, maybe, about needing a loan in future to cover dr bills. If they say they can't, then at least you know. If they say yes or maybe, then at least you have started the conversation and it won't be such a surprise to them later. What's family for, huh?
My #1 priority is getting well; everything else is done pretty much in support of that, because without my health, the rest of it ain't happening as it should.
It's hard to think this stuff through sometimes, but figure out the money and talk to your folks, maybe, about needing a loan in future to cover dr bills. If they say they can't, then at least you know. If they say yes or maybe, then at least you have started the conversation and it won't be such a surprise to them later. What's family for, huh?
Thanks that makes me feel better. I guess you just have to do what you have to do! I've just had my symptoms for 5 months now.
I do understand the extra worry of having to 'juggle' the finances to pay for treatment - BUT - this is your health and that is worth every penny - [dime/dollar!!] - so wether you have to beg, steal or borrow [o.k. maybe not the 'steal' ] - it has to be done.
I am not sure how long you have been having symptoms - but I think 'we' are all agreed -that the sooner you start treatment the better.
I hate 'owing' money but sometimes it is very neccessary - it's not like you are blowing it on a 'luxury holiday' - [that comes later!!]
gorbsx
I am not sure how long you have been having symptoms - but I think 'we' are all agreed -that the sooner you start treatment the better.
I hate 'owing' money but sometimes it is very neccessary - it's not like you are blowing it on a 'luxury holiday' - [that comes later!!]
gorbsx
Thank you all. I think I'm just going to have to buckle down and pay for the LLMD out of pocket. I've been working my insurance to cover one but they wont. I'm just scared that since I can't work and my husband and I have trouble covering our bills now, that I wont be able to afford a good LLMD. My dad paid for the one visit I had with the LLMD that diagnosed me. I dont want to be that far in debt at the age of 21!
I'm also skeptical of an ID doctor. Even if s/he treats you, they will likely follow the IDSA guidelines and cut you off after 28 days or less. That's why so many of us go to LLMD's, as they are the only doctors willing to treat until symptoms resolve.
You are "lucky" to have a CDC positive test, but as patsy10 notes, some doctors do not trust the Igenex labs. An LLMD surely would, though.
You are "lucky" to have a CDC positive test, but as patsy10 notes, some doctors do not trust the Igenex labs. An LLMD surely would, though.
yeah, the cure is almost as hard to figure out how to get the diagnosis was. :)
but at least you know what you're aiming for now!
you go girl -- we're rooting for you.
but at least you know what you're aiming for now!
you go girl -- we're rooting for you.
Ufff!!! It almost seems that it's harder after the initial dx than getting the dx!
Sorry, I have a hard time communicating things in order so that they make sence... :) I know you know what I mean.
I went to Oregon where my family lives and saw my old primary doc and he helped me get into a LLMD there in Oregon and she ordered the IGeneX labs and shortly after I came back home to Arizona. As soon as I got back the LLMD called me with the results.
Here are the results:
IGeneX IGM CDC/NYS result:
23-25 kDA, 34 KDA, 41 kDA all double stared bands and positive. It says you need 2 or more double stared bands for a positive. CDC positive if two or more of the following are positive: 23-25, 39, 41 k DA. I had the 23-25 and the 41.
IGeneX IGG CDC/NYS result:
34 KDA, 39 KDA, 41 KDa (3) all double stared bands and positive. 58 k DA unstared but positive.
Says for the IGG WB positive need two or more double stared, I have 5.
For the CDC positive you need 5 of the following bands, 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93k D.
I have 6 positives of those.
So that means CDC criteria im positive. Right, thats what the LLMD said over the phone.
Anyhow so now I'm back in Arizona, with my test results, and the base doctor, my primary care physician refered me to the only doctor in this town that could treat me with the lyme. And that is the internal medicine/ infectious disease doc. I will see her on Wednesday.
Through tricare I could not get ANY LLMD to get covered. The ID doc was the closest. I did call tricare and tell them my situation and they gave me a list of docs in my area out in town that work with tricare and had lyme on their discriptions, but one of them was my old doc that said I was crazy for thinking I had lyme disease and wouldn't test me and so I dont know how good that list is. Unfortunatly I picked the wrong day to go in and change my primary cuz they told me I HAD to have a base doc. So yeah any info on trying to get to a LLMD through Tricare would be much appreciated!
I dont know how much all of that made sence :) Damn Lyme!
I went to Oregon where my family lives and saw my old primary doc and he helped me get into a LLMD there in Oregon and she ordered the IGeneX labs and shortly after I came back home to Arizona. As soon as I got back the LLMD called me with the results.
Here are the results:
IGeneX IGM CDC/NYS result:
23-25 kDA, 34 KDA, 41 kDA all double stared bands and positive. It says you need 2 or more double stared bands for a positive. CDC positive if two or more of the following are positive: 23-25, 39, 41 k DA. I had the 23-25 and the 41.
IGeneX IGG CDC/NYS result:
34 KDA, 39 KDA, 41 KDa (3) all double stared bands and positive. 58 k DA unstared but positive.
Says for the IGG WB positive need two or more double stared, I have 5.
For the CDC positive you need 5 of the following bands, 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93k D.
I have 6 positives of those.
So that means CDC criteria im positive. Right, thats what the LLMD said over the phone.
Anyhow so now I'm back in Arizona, with my test results, and the base doctor, my primary care physician refered me to the only doctor in this town that could treat me with the lyme. And that is the internal medicine/ infectious disease doc. I will see her on Wednesday.
Through tricare I could not get ANY LLMD to get covered. The ID doc was the closest. I did call tricare and tell them my situation and they gave me a list of docs in my area out in town that work with tricare and had lyme on their discriptions, but one of them was my old doc that said I was crazy for thinking I had lyme disease and wouldn't test me and so I dont know how good that list is. Unfortunatly I picked the wrong day to go in and change my primary cuz they told me I HAD to have a base doc. So yeah any info on trying to get to a LLMD through Tricare would be much appreciated!
I dont know how much all of that made sence :) Damn Lyme!
I'm a bit confused on your situation. So you had an IgeneX CDC positive test? Who did ordered this test for you? Who are you seeing now? You need to find out if you were for sure CDC positive and if not what bands are POS?
Have you seen the ID (infectious disease) Dr yet? If you are in fact CDC pos you will not have as hard of time getting them to treat you. But even ID dr's aren't that lyme literate. I think you should seek a LLMD.
I am military also and am trying to find a way to get Tricare to pay for my LLMD. I don't know if it will happen though... cause most LLMD don't accept insurance.
How are you feeling? Anyways good luck to you! I hope you get someone to help you. Keep us updated.
Have you seen the ID (infectious disease) Dr yet? If you are in fact CDC pos you will not have as hard of time getting them to treat you. But even ID dr's aren't that lyme literate. I think you should seek a LLMD.
I am military also and am trying to find a way to get Tricare to pay for my LLMD. I don't know if it will happen though... cause most LLMD don't accept insurance.
How are you feeling? Anyways good luck to you! I hope you get someone to help you. Keep us updated.
Thank you all for your help,
Patsy10- What is the ID test? I was CDC positive, I believe. The doctor that my primary on Base sent me to is an internal medicine/ infectious disease doctor. Have you had any experience with how they typically treat lyme? Do they just try to get you on antibiotics or do they also try to better your immune system and other parts of your body that the lyme is effecting?
I really liked how the naturopathic llmd's treatment of antibiotics and vits/herbs different things to help your body out better. But she is in a different state and the insurance wont cover her. That gets expensive!
Patsy10- What is the ID test? I was CDC positive, I believe. The doctor that my primary on Base sent me to is an internal medicine/ infectious disease doctor. Have you had any experience with how they typically treat lyme? Do they just try to get you on antibiotics or do they also try to better your immune system and other parts of your body that the lyme is effecting?
I really liked how the naturopathic llmd's treatment of antibiotics and vits/herbs different things to help your body out better. But she is in a different state and the insurance wont cover her. That gets expensive!
I started on 'doxy' - I had some 'acid reflux' problems with that - I wasn't taking any pro-biotics - but then again I may just have been 'herxing' [toxins being expelled from body]
I will say that the 4/5 weeks following the 'herx' type thing - I felt the best I had in over 3 years
I am 'trying' 'amoxicillin' at present and taking 'acidophilus' also keeping to a healthier diet - drinking lots of water.
gorbs
I will say that the 4/5 weeks following the 'herx' type thing - I felt the best I had in over 3 years
I am 'trying' 'amoxicillin' at present and taking 'acidophilus' also keeping to a healthier diet - drinking lots of water.
gorbs
I've also been on more than one antibiotic but I have never been tested for co-infections. So each doctor treats differently.
Don't be surprised if the ID tells you that you do not have lyme. This is often a typical response unless you have a CDC positive test.
Don't be surprised if the ID tells you that you do not have lyme. This is often a typical response unless you have a CDC positive test.
Well, it's different for everyone, depending on coinfections and depending on the dr's assessment. I have friends with Lyme+ who are on totally different regimens than I am, both here in California and back East. There's no one-size-fits-all, even among LLMDs, as near as I can tell.
For example, I've been on 4 different antibiotic regimens, one to treat a coinfection, and two others I didn't tolerate well for the Lyme. But other people do fine on the ones I didn't tolerate well. I've never been on doxycycline, but it sounds like a lot of people are.
Check the ilads dot org website for information, perhaps there is data there that would be helpful to you. Sorry!
For example, I've been on 4 different antibiotic regimens, one to treat a coinfection, and two others I didn't tolerate well for the Lyme. But other people do fine on the ones I didn't tolerate well. I've never been on doxycycline, but it sounds like a lot of people are.
Check the ilads dot org website for information, perhaps there is data there that would be helpful to you. Sorry!
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