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IV antibiotics?
With a CDC positive Lyme result and not much effect with oral antibiotics, I cannot help but wonder how people are getting their IV antibiotics paid for. Perhaps I am just poorer than most but uhh, is there some type of insurance that would pay for what I need?? My insurance will cover a months worth of IV antibiotics but that is all. And will not even pay for IM injections at all. It would be interesting to see how I respond. But in all reality, that's just a tease! If I could pay for decent health insurance that has coverage at a cheaper rate than IV antibiotics, I would consider that. I am on my own with two kids and no support from anyone! There has to be options. I just feel bad asking for money, it is not my nature and never has been. I don't think I could do it if my life depended on it.
I am not giving up on orals yet, just thinking ahead.
Any ideas or suggestions??
I am not giving up on orals yet, just thinking ahead.
Any ideas or suggestions??
Best Answer
Awww, thanks so much for your kind words of encouragement! And as always being so helpful!!
I admire you sense of honor in wanting to pay back what others might contribute to help you get treated. Just note it down in the 'Things To Do When I Am Well' list, and even if it's a year or more, and even it's only a few dollars every now and then, then take solace and pride in the fact that you are helping others as you were helped. Make a mental note to self, and a resolution on New Year's Day that, when able, you will pay back what you can, when you can.
Even tho the program you are looking at doesn't require repayment, you could ask if they will accept donations when you are able, and I imagine they will say yes. Then put it on the karmic to-do list. If they will not accept donations (why I dunno), then contribute to another Lyme fund. LymeTAP is one, and I forget the name of the other one I've read about, but there are ways. Not only will you be doing good works, but it shows that you are moving toward being well -- and that is a precious inspiration to hold onto. You go, girl.
I don't recall what part of the country you are in, and your profile doesn't say. If you don't want to post it in the open here, would you send me a private message of what city you are near (even a smallish one) and I'll see if I can locate any Lyme specialists just by noodling around on the 'net.
I'm with you on the steroids, but remember, I'm no doc. The thoughtful and serious approach you are taking on how to proceed through treatment is a good thing. Lyme is like a cross-country trip: you find the maps, you mark the route, and then when you're on the road, you make adjustments depending on what happens. Kinda like life, too, huh. ;)
I think you're doing really well, doing what an engineer friend once told me his approach to work and life is: just 'work the problem', meaning try to figure out where you are, what's up, what needs changing, when, why, how, and keep going over it all and adding new data points as you find them, adjusting your plans accordingly as you proceed through time and terrain. A good metaphor for life, eh. And it stands the best chance of ending up where you want to, no matter what the intended destination.
Good for you!
Well, it works in the Lymelands too, I think. Be kind to yourself -- I think you're doing fine.
Even tho the program you are looking at doesn't require repayment, you could ask if they will accept donations when you are able, and I imagine they will say yes. Then put it on the karmic to-do list. If they will not accept donations (why I dunno), then contribute to another Lyme fund. LymeTAP is one, and I forget the name of the other one I've read about, but there are ways. Not only will you be doing good works, but it shows that you are moving toward being well -- and that is a precious inspiration to hold onto. You go, girl.
I don't recall what part of the country you are in, and your profile doesn't say. If you don't want to post it in the open here, would you send me a private message of what city you are near (even a smallish one) and I'll see if I can locate any Lyme specialists just by noodling around on the 'net.
I'm with you on the steroids, but remember, I'm no doc. The thoughtful and serious approach you are taking on how to proceed through treatment is a good thing. Lyme is like a cross-country trip: you find the maps, you mark the route, and then when you're on the road, you make adjustments depending on what happens. Kinda like life, too, huh. ;)
I think you're doing really well, doing what an engineer friend once told me his approach to work and life is: just 'work the problem', meaning try to figure out where you are, what's up, what needs changing, when, why, how, and keep going over it all and adding new data points as you find them, adjusting your plans accordingly as you proceed through time and terrain. A good metaphor for life, eh. And it stands the best chance of ending up where you want to, no matter what the intended destination.
Good for you!
Well, it works in the Lymelands too, I think. Be kind to yourself -- I think you're doing fine.
Thanks so much Jackie for the advice and encouragement!
It does help to know how others are being affected. That way I can try to make a better overall assumption.
I don't think I could promise to pay anyone back just for the simple fact that, what if I don't improve? And what if I'm never able to regain enough strength to maintain a full time job? Those thoughts always cross my mind and I am no deal breaker. I know some people are, and they just don't care but I am not one of them. But fortunately the assistance program I am looking at doesn't require that type of pledge.
Unfortunately though, a second opinion is not an option in my part of the country. I have to just do my research and hope I am doing the right thing, like choose NOT to take the steroids that I was given for my adrenal issues. Yeah the dose is low, and my immune function test are fine but since we now know I have Lyme. Don't really think that is the best idea. What do you think??
It does help to know how others are being affected. That way I can try to make a better overall assumption.
I don't think I could promise to pay anyone back just for the simple fact that, what if I don't improve? And what if I'm never able to regain enough strength to maintain a full time job? Those thoughts always cross my mind and I am no deal breaker. I know some people are, and they just don't care but I am not one of them. But fortunately the assistance program I am looking at doesn't require that type of pledge.
Unfortunately though, a second opinion is not an option in my part of the country. I have to just do my research and hope I am doing the right thing, like choose NOT to take the steroids that I was given for my adrenal issues. Yeah the dose is low, and my immune function test are fine but since we now know I have Lyme. Don't really think that is the best idea. What do you think??
I'm just a case study of one, but I never felt worse on meds than I did without them -- so any Herx that I was having was so mild as to not be noticeable. Whether fatigue, or brain fog, or aching etc., it was about the same before meds as after I started them.
I began to feel gradually better over the months of treatment, but did not have anything that felt out of the ordinary misery I had been in for so long. Everyone is different that way, but I can understand your concern that your treatment may be ineffective because you don't feel worse or better on a relatively short time frame.
If you feel bad asking for money, then pledge to pay back to the group(s) mentioned above everything they loan/grant to you. They may not require that kind of pledge, but it takes you off the hook inside your own head. Whatever gets you through, and then you can do the good deed by paying it back, or forward, as the movie says.
" I cannot help but wonder how people are getting their IV antibiotics paid for" -- well, they borrow from family, or they put it on credit cards, or they have insurance that will cover, or they get grants from organizations like the ones mentioned above.
Lyme isn't a quick cure for anyone, because of the nature of the bacteria.
I had babesia and Lyme, and was treated for babs first, then Lyme, for a total of almost a year. When treatment was over, I was not feeling zippy even then, because my body had been through heck and back. It took another year or so before I began to feel like the old, pre-Lyme me.
I would not assume that you have to have the same reaction pattern as anyone else -- Lyme is tricky and manifests differently in everyone.
If you are still concerned that you are not being treated appropriately, then get a second opinion from another doc. Also note tho, that if you are feeling what might be anxiety (worried that the treatment may not be working), that could be Lyme talking too. I felt like I had the flu and a hangover, 24/7, even after treatment started. It lifted only gradually over the whole almost-a-year, and there was never a sudden improvement.
So for me, there was no 'guide to progress'. Just time and meds and sleep and good, healthy food. If you are not taking magnesium supplements, I recommend them. They are very soothing, like milk to a baby, because milk is loaded with magnesium too. Lyme bacteria use up magnesium in your body, and low levels affect emotions and bring on anxiety. Give it a try!
You'll get through this. You sound strong even tho so ill. That's a very good sign. You can do it.
I began to feel gradually better over the months of treatment, but did not have anything that felt out of the ordinary misery I had been in for so long. Everyone is different that way, but I can understand your concern that your treatment may be ineffective because you don't feel worse or better on a relatively short time frame.
If you feel bad asking for money, then pledge to pay back to the group(s) mentioned above everything they loan/grant to you. They may not require that kind of pledge, but it takes you off the hook inside your own head. Whatever gets you through, and then you can do the good deed by paying it back, or forward, as the movie says.
" I cannot help but wonder how people are getting their IV antibiotics paid for" -- well, they borrow from family, or they put it on credit cards, or they have insurance that will cover, or they get grants from organizations like the ones mentioned above.
Lyme isn't a quick cure for anyone, because of the nature of the bacteria.
I had babesia and Lyme, and was treated for babs first, then Lyme, for a total of almost a year. When treatment was over, I was not feeling zippy even then, because my body had been through heck and back. It took another year or so before I began to feel like the old, pre-Lyme me.
I would not assume that you have to have the same reaction pattern as anyone else -- Lyme is tricky and manifests differently in everyone.
If you are still concerned that you are not being treated appropriately, then get a second opinion from another doc. Also note tho, that if you are feeling what might be anxiety (worried that the treatment may not be working), that could be Lyme talking too. I felt like I had the flu and a hangover, 24/7, even after treatment started. It lifted only gradually over the whole almost-a-year, and there was never a sudden improvement.
So for me, there was no 'guide to progress'. Just time and meds and sleep and good, healthy food. If you are not taking magnesium supplements, I recommend them. They are very soothing, like milk to a baby, because milk is loaded with magnesium too. Lyme bacteria use up magnesium in your body, and low levels affect emotions and bring on anxiety. Give it a try!
You'll get through this. You sound strong even tho so ill. That's a very good sign. You can do it.
I don't really know if the antibiotics are working. People here are telling me that it can take a while and that a herx can last a while. But then I have my physician on the other end saying that this is not normal, that I should be feeling better by now - not worse. So who's word do I follow? My physician is the one sending in my scripts, I am just the messenger. So I really do not have a clue!! If only there was sOmEtHiNg that could be used as a guide to progress!
When I say I feel worse, I mean debilitated by fatigue. And I was extremely tired and debilitated by fatigue in the first place, so it is hard to tell. It just feels a little worse, but then again what prescription doesn't have fatigue listed as a side effect?
With high dose antibiotics, I would not doubt that it could be side effects.
Thanks!
When I say I feel worse, I mean debilitated by fatigue. And I was extremely tired and debilitated by fatigue in the first place, so it is hard to tell. It just feels a little worse, but then again what prescription doesn't have fatigue listed as a side effect?
With high dose antibiotics, I would not doubt that it could be side effects.
Thanks!
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you will find a number of groups who assist those with Lyme.
When you are well, you could return the favor by contributions when you are able to do so.
.... but first, are you sure the oral meds aren't working? Lyme is a slow recovery, not like a sore throat or an earache that starts getting better within a couple of days. Lyme is a slow treatment and therefore a slow recovery, because Lyme bacteria reproduce on a slow cycle, and it is mainly when the bacterial cell wall is dividing to make new little bacteria that the antibiotics can do their killing. So it takes patience and persistence.
Lyme bacteria also have the ability to hide from the immune system, and that means a longer hunt for them in the biofilms they create to avoid detection by the immune system. Lyme also hides in cartilage, where there is low blood flow and the immune system doesn't penetrate there as it would other kinds of tissue.
Most common bacterial infections are cured in a couple of weeks or so, but there are others like Lyme and tuberculosis in which treatment time is counted in months, not weeks. TB treatment is often a year or more.