Aa
There is no way I can get treatment
After everything, there is no possible way I can get treatment for lyme. I got the test, I got a doctor to review it, and he said I had lyme and babesia parasite (sp?) (my IgeneX test never came back to my doctors office, but the lime doc said a different test confirmed it) But an hour visit is 360$, and no doctor in the state takes insurance now that it is 2016. I simply can not afford it. There is no way. I barely make enough money to cover basic living cost and driving the 800+ miles to an appointment takes up any and all extra that I may have.
I don't know what to do. Lyme tap stated to me you MUST pay out of pocket first and try for a partial reimbursement. I could not do that.
The secretary tried to argue with me for 10 minutes that I needed to see the doctor and pay out of pocket, and I told her there is SIMPLY NO WAY, I have NO MONEY, and that I can't make an appointment because I could never pay. I asked her if the doctor could treat me without monthly office visits since I can get the drugs covered by insurance still. She then said no and dismissed me.
This office already did not tell me in 2015 when I saw the doctor that I would owe 50$ out of pocket because my insurance is garbage. So now I already owe them money that I DID NOT KNOW ABOUT prior to driving over 800 miles and going to the appointment only to be told this after my appointment and that they would stop taking all insurance in 2016. I saw the doc on December 29th
I have no friends that would pay and my family would not and could not afford either.
I guess I just suffer. I have no other option than to live with this for the rest of my life. It is a shame, I am only in my early 20s and my health keeps declining.
I don't know what to do. Lyme tap stated to me you MUST pay out of pocket first and try for a partial reimbursement. I could not do that.
The secretary tried to argue with me for 10 minutes that I needed to see the doctor and pay out of pocket, and I told her there is SIMPLY NO WAY, I have NO MONEY, and that I can't make an appointment because I could never pay. I asked her if the doctor could treat me without monthly office visits since I can get the drugs covered by insurance still. She then said no and dismissed me.
This office already did not tell me in 2015 when I saw the doctor that I would owe 50$ out of pocket because my insurance is garbage. So now I already owe them money that I DID NOT KNOW ABOUT prior to driving over 800 miles and going to the appointment only to be told this after my appointment and that they would stop taking all insurance in 2016. I saw the doc on December 29th
I have no friends that would pay and my family would not and could not afford either.
I guess I just suffer. I have no other option than to live with this for the rest of my life. It is a shame, I am only in my early 20s and my health keeps declining.
The "rotting away" you feel is the Lyme. Your joints are fine and don't let anyone tell you different. I had knee and shoulder surgery for pain because I thought my joints were bad. Guess what? My joints are fine, they just have Lyme bacteria running through them. The one thing I can suggest to you for some relief from that pain is a portable sauna, you can find one on Amazon for about $100. I know it seems like a lot, but for me, it paid for itself after one time of using it when my pain melted away. It was worth EVERY penny. Keep in mind that its temporary, you need to kill the Lyme, BUT when you can't move due to the pain, a little relief is a lifesaver. And you can use it as much as you like. You could try a gofundme account for Lyme help as well, just a suggestion. (if you do, send me the link via personal IM)
1 Comments
ILADS is where I got the list of lyme docs. :/ There are only 5 in the state, all on the lower east side near Detroit or bay city.
Not to worry about feeling out of sorts: when you've got Lyme and maybe other infections too, you are ENTITLED to be out of sorts. No need to apologize.
(Note: Lyme messes with the whole endocrine system ... meaning hormonal system ... and that affects *how you feel*! Don't beat yourself up -- if you were *not* concerned about all this, I would worry more, you know? That you are reacting with concern shows that you are strong, and that, my friend, will get you through all this.)
It is good that you come here to vent and figure things out. Talking to the wall isn't nearly as productive. ;) I think I mentioned elsewhere that when I was in bad shape with Lyme and a co-infections, I would mutter to myself over and over: "It's not me. It's the bugz [meaning the Lyme]. It's not me. It's the bugz. ..." And whaddaya know, I was right!
Hang on, and keep us posted -- this site helped me get through a lot, because people here really do understand what you're going through. You are strong, or you wouldn't be here to fight back against Lyme. You got grit.
(Note: Lyme messes with the whole endocrine system ... meaning hormonal system ... and that affects *how you feel*! Don't beat yourself up -- if you were *not* concerned about all this, I would worry more, you know? That you are reacting with concern shows that you are strong, and that, my friend, will get you through all this.)
It is good that you come here to vent and figure things out. Talking to the wall isn't nearly as productive. ;) I think I mentioned elsewhere that when I was in bad shape with Lyme and a co-infections, I would mutter to myself over and over: "It's not me. It's the bugz [meaning the Lyme]. It's not me. It's the bugz. ..." And whaddaya know, I was right!
Hang on, and keep us posted -- this site helped me get through a lot, because people here really do understand what you're going through. You are strong, or you wouldn't be here to fight back against Lyme. You got grit.
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You say, "I got a copy of my test today. As it turns out my doctors office had had it for over a week and not told me. !? They were confused by it I guess, but I got the copy today." I would tend to agree ... your docs sound like they aren't really sure what to do.
All the more reason to find a solid Lyme doc, and it may be that there are LLMDs near you but they keep their heads down to avoid getting hassled by the docs who think they know everything about Lyme but really don't.
You can get names of Lyme docs by emailing to ILADS dot org and they can send you ILADS-member MDs near you. Some docs don't like the publicity of being called 'Lyme docs' or 'LLMDs', so they don't advertise. I bet there are Lyme docs near you, but they are just hiding in plain sight.
Hang in there!
All the more reason to find a solid Lyme doc, and it may be that there are LLMDs near you but they keep their heads down to avoid getting hassled by the docs who think they know everything about Lyme but really don't.
You can get names of Lyme docs by emailing to ILADS dot org and they can send you ILADS-member MDs near you. Some docs don't like the publicity of being called 'Lyme docs' or 'LLMDs', so they don't advertise. I bet there are Lyme docs near you, but they are just hiding in plain sight.
Hang in there!
I got a copy of my test today. As it turns out my doctors office had had it for over a week and not told me. !? They were confused by it I guess, but I got the copy today.
The other test he did was for something starting with a C. And I can not for the life of me remember it. And he wants an allergy test which I might be able to have drawn but probably no one can read it. I got my results for IgeneX sent to his office but I think they will just tell me they can not do anything over the phone.
My hormones have been off for over a year. No reason why. I am now on a mild birthcontroll to try and regulate them. They were really low before, but then they shoot up to being too high. The pill seems to help with whatever skin problem I was having, but I'm not sure I like it either.
In the last 6 months my joints have been rotting away, I now have a bad hip, a bad knee and a bad shoulder and a bad neck. I never got hurt, they just went bad and over all things are really starting to ache in my tendons/ligaments.
I'm sorry if I was harsh. I woke up today to shooting pains on the side of my head and face that haven't left yet. On days I feel extra crappy its very upsetting. And I feel hopeless about it because in my state no one takes insurance
Oh I live in west michigan. the LP. I drove all the way down and all the way near to the ohio boarder to see that LLMD. And then after one visit they inform me they no longer take insurance.
The other test he did was for something starting with a C. And I can not for the life of me remember it. And he wants an allergy test which I might be able to have drawn but probably no one can read it. I got my results for IgeneX sent to his office but I think they will just tell me they can not do anything over the phone.
My hormones have been off for over a year. No reason why. I am now on a mild birthcontroll to try and regulate them. They were really low before, but then they shoot up to being too high. The pill seems to help with whatever skin problem I was having, but I'm not sure I like it either.
In the last 6 months my joints have been rotting away, I now have a bad hip, a bad knee and a bad shoulder and a bad neck. I never got hurt, they just went bad and over all things are really starting to ache in my tendons/ligaments.
I'm sorry if I was harsh. I woke up today to shooting pains on the side of my head and face that haven't left yet. On days I feel extra crappy its very upsetting. And I feel hopeless about it because in my state no one takes insurance
Oh I live in west michigan. the LP. I drove all the way down and all the way near to the ohio boarder to see that LLMD. And then after one visit they inform me they no longer take insurance.
1 Comments
The "C" test may be for cytomegalovirus (CMV for short). CMV is a virus that sometimes comes along for the Lyme party.
One more comment for the evening:
You say: "After everything, there is no possible way I can get treatment for lyme. I got the test, I got a doctor to review it, and he said I had lyme and babesia parasite (sp?) (my IgeneX test never came back to my doctors office, but the lime doc said a different test confirmed it)"
I would call IGeneX (or ask a friend to do call) and tell them you want a copy of your test results since you never got them and apparently neither did your doc.
But here's something *I* will do and get back to you with: I will call IGeneX and tell them a friend of mind [that would be you] had IGeneX tests run but that you never got the test results back, so what do you have to do to get a copy? I don't know your real name and don't want to know it, but I will post here what they tell me about you getting a copy.
IGeneX is a good company, in my experience, so they should have an answer.
You say: "After everything, there is no possible way I can get treatment for lyme. I got the test, I got a doctor to review it, and he said I had lyme and babesia parasite (sp?) (my IgeneX test never came back to my doctors office, but the lime doc said a different test confirmed it)"
I would call IGeneX (or ask a friend to do call) and tell them you want a copy of your test results since you never got them and apparently neither did your doc.
But here's something *I* will do and get back to you with: I will call IGeneX and tell them a friend of mind [that would be you] had IGeneX tests run but that you never got the test results back, so what do you have to do to get a copy? I don't know your real name and don't want to know it, but I will post here what they tell me about you getting a copy.
IGeneX is a good company, in my experience, so they should have an answer.
PS You say, "I barely make enough money to cover basic living cost and driving the 800+ miles to an appointment takes up any and all extra that I may have."
800 miles is indeed a very long way, both for you and your car and your budget. Are there no cities at all closer to you? If you let us know about where you are ["west Texas" or "near St Louis"], maybe we have some leads.
800 miles is indeed a very long way, both for you and your car and your budget. Are there no cities at all closer to you? If you let us know about where you are ["west Texas" or "near St Louis"], maybe we have some leads.
I must have said 10 times I don't have any family or friends to ask. :( I am trying to find out more about lyme light.
I am so sick an tired of being sick and tired. And I don't know if I could even get a grant from them. It sounds like only a few people a year get it, and it will probably go only to the youngest children as they come first in the order of things.
I doub't they will help me if I can't get an LLMD to even review my results or provide other testing. It doesn't sound like my test it a big 5 band positive at all anyway so I'd probably be last on the list.
I'm so tired of suffering
I am so sick an tired of being sick and tired. And I don't know if I could even get a grant from them. It sounds like only a few people a year get it, and it will probably go only to the youngest children as they come first in the order of things.
I doub't they will help me if I can't get an LLMD to even review my results or provide other testing. It doesn't sound like my test it a big 5 band positive at all anyway so I'd probably be last on the list.
I'm so tired of suffering
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I hear you. I remember how I felt ... Lyme messes with your whole hormonal system, which can easily feel like depression and despair. After treatment, when you are well again, the positive feelings will come back.
I used to go around muttering, "It's not me ... it's the bugz", over and over and over, to remind myself that it wasn't my fault somehow. And guess what -- I was right! It wasn't me: it was my illness.
Getting rid of Lyme and feeling totally fine again is doable, and definitely worth doing. YOU GO!!!
I used to go around muttering, "It's not me ... it's the bugz", over and over and over, to remind myself that it wasn't my fault somehow. And guess what -- I was right! It wasn't me: it was my illness.
Getting rid of Lyme and feeling totally fine again is doable, and definitely worth doing. YOU GO!!!
Try calling Lymelight and explaining that your current doc will not give a doctor letter unless you pay $_____ and you don't have the funds. And, I think that by law you are ENTITLED to get copies of all your tests and records. Let us know how it goes -- we can brainstorm some more here.
1 Comments
One more thought: your doc has already seen and examined you, so I would think the doc should be able to fill out that form without another appointment. Give it a try.
There are at least two established charity organizations that help Lyme patients who need funding assistance.
-- lymelightfoundation [dot] org
-- LymeTAP [dot] com
Check both their websites -- they are each structured differently, so if you don't qualify for one of them, you may for the other.
I would also try finding a Lyme group in your area and see what charitable abilities they may have.
Let us know how it goes -- we might have more ideas if needed. Also, consider finding Lyme groups near you that may have a support program you would qualify for.
Keep us posted!
-- lymelightfoundation [dot] org
-- LymeTAP [dot] com
Check both their websites -- they are each structured differently, so if you don't qualify for one of them, you may for the other.
I would also try finding a Lyme group in your area and see what charitable abilities they may have.
Let us know how it goes -- we might have more ideas if needed. Also, consider finding Lyme groups near you that may have a support program you would qualify for.
Keep us posted!
1 Comments
I contacted a lyme group here and I told the woman I could not pay for my treatment and asked if there was any help available and she never responded.
I am going to call lymelight and see. Teachnically I would still qualify for them but I need a signed letter head and my LLMD will need another apointment but I don't have the money for even one apointment. I think these two things already disqualify me because I can't afford to have a doctor do any official work.
Applicant must be an active patient of a Lyme-literate MD, ND, DO, or NP. NDs must be CNME accredited.
A positive lab test does not replace the need for a doctor letter.
How do i get any of that when the office says I need to pay 360$ to speek with the doctor again? It is looking really bleak for me ((( And I have not been feeling any better, its just getting worse.
I am going to call lymelight and see. Teachnically I would still qualify for them but I need a signed letter head and my LLMD will need another apointment but I don't have the money for even one apointment. I think these two things already disqualify me because I can't afford to have a doctor do any official work.
Applicant must be an active patient of a Lyme-literate MD, ND, DO, or NP. NDs must be CNME accredited.
A positive lab test does not replace the need for a doctor letter.
How do i get any of that when the office says I need to pay 360$ to speek with the doctor again? It is looking really bleak for me ((( And I have not been feeling any better, its just getting worse.
Ok I'll try. I dont understand why insurance doesn't cover this. Why does lyme treatment have to be $360 an hour!! Most insurance pays a fraction of that, but if I have to pay it is $360!? I can only make $7.50 an hour! $50 an hour would make most people more than elated! And it would make it atleast remotly possible for people to afford treatment. I don't understand why doctors have to charge so much in this country... It is greed, pure greed. America the great...yeah right.
1 Comments
Don't automatically assume it's 'pure greed' -- a doc has to pay office rent, have helpers (such as other docs, nurses, receptionist), and keep the lights on. I agree that $360 an hour is pretty high, so go to the Lyme charities, ask family and friends to pool some funds for your first appointment, etc. Even docs have to pay the rent.
My heart goes out to you Katya4! Check out the website lymediseasechallenge (dot) org slash financial assistance. Maybe there is a program on there that will help you. There are also books and resources of protocols you can try yourself. Buhner is one that comes to mind. I am not on his protocol, nor can I say anything about it, but something to check out. Don't give up hope. Maybe start a go fund me page to help with payments. Don't stop fighting, you can do it. You are way too young to give up. I feel like giving up on most days too, but we know we have to just keep sticking together and fighting. Hugs to you!!
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