Aa
Being broke must be a death sentance
I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
Welcome to MedHelp Lyme -- and thanks for your information about funding. May I suggest you start a new thread with a message something like 'Financial assistance for needy Lyme patients' and re-post your information there?
Otherwise it may not be seen by many, buried at the bottom of this chain.
Thanks again.
Otherwise it may not be seen by many, buried at the bottom of this chain.
Thanks again.
Hello ephedra
I'm new to this site but not to Lyme. I'd promised myself that I would just 'lurk' for a while but your financial plight impells me to suggest this-----(maybe I missed this somewhere, so sorry)
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
http://www.needymeds.org/indices/newuser.htm
http://www.patientassistance.com/
Perhaps, after you find a doctor who will treat you, you may find a use for them. (And may that be soon---- I agree with most of the posters here.)
I'm like you---- healthy as a horse (on lab tests). Sick as a dog in real life. Never had a positive Lyme test from Igenex. But after years and years of treating, bicillin IM kicked me into a few years of remission. Please don't take that as saying that bicillin will help YOU or YOU. :) It might or it might not. More than a decade of this crap has shown me that each person will get better in a different way than the next.
I'm new to this site but not to Lyme. I'd promised myself that I would just 'lurk' for a while but your financial plight impells me to suggest this-----(maybe I missed this somewhere, so sorry)
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
http://www.needymeds.org/indices/newuser.htm
http://www.patientassistance.com/
Perhaps, after you find a doctor who will treat you, you may find a use for them. (And may that be soon---- I agree with most of the posters here.)
I'm like you---- healthy as a horse (on lab tests). Sick as a dog in real life. Never had a positive Lyme test from Igenex. But after years and years of treating, bicillin IM kicked me into a few years of remission. Please don't take that as saying that bicillin will help YOU or YOU. :) It might or it might not. More than a decade of this crap has shown me that each person will get better in a different way than the next.
I wish I had a friend or family member to rely on. I AM quite a bit confused. I get lost in my own city all the time, so I couldn't imagine making it to this doctors office but I'd try. Hopefully I wouldn't be too physically sick if I did arrive. I'm so incredibly sensitive to motion combined with the stress from driving in an unfamiliar territory with high traffic, I can almost count on it but I won't. I'm trying to stay positive! The sickness does get quite intense though. Seeing the doc would probably be another stressor but to a lesser degree than the drive.
Consider lining up a friend or family member to take you into the city when the appointment time comes. Takes the stress off you, and if you're as addled as I was, I was confused a whole lot of the time and had trouble doing even simple things sometimes, never mind an unfamiliar and complex task, topped off with anxiety about seeing the doc. It's a big event, after all.
Oh, I see.
You actually felt a die off? I wonder what that must be like. Sounds awesome!
I've been taking a fairly large dose of Keflex for a week and I don't think I feel any different, so maybe they're not affected by it IDK.
Yeah, I've been taking Adderall for quite a while. I don't feel like begging a doctor for them though, so mine aren't really cheap. They seem to have lost most of their effectiveness but they do get me outta bed and help with my mental status, so that's better than nothing. I'm not going to increase my dose, regardless. It's tempting but I know how addiction works and I don't want it.
I was able to make an appointment with an LLMD and they can't get me in for 6 MONTHS. I can't even imagine what shape I'd be in by then! I'm on my own with this and I'm already worried about the 1.5 hour drive through the big city.
I look forward to recovery though, regardless of how long it may be. I can't remember ever being normal. The last 10 years kinda got away as I didn't realize I was slowly creeping away. The breaking point was when I went on an extremely low dose course of Isotretinoin and POW!! Everything accelerated. It lowered my immune system, allowing the bacteria to thrive but at least now I know. It was confusing at first because I thought I was experiencing side effects of that medication but I didn't understand why as I was only taking 1/3 of the recommended dose.
Thanks!
You actually felt a die off? I wonder what that must be like. Sounds awesome!
I've been taking a fairly large dose of Keflex for a week and I don't think I feel any different, so maybe they're not affected by it IDK.
Yeah, I've been taking Adderall for quite a while. I don't feel like begging a doctor for them though, so mine aren't really cheap. They seem to have lost most of their effectiveness but they do get me outta bed and help with my mental status, so that's better than nothing. I'm not going to increase my dose, regardless. It's tempting but I know how addiction works and I don't want it.
I was able to make an appointment with an LLMD and they can't get me in for 6 MONTHS. I can't even imagine what shape I'd be in by then! I'm on my own with this and I'm already worried about the 1.5 hour drive through the big city.
I look forward to recovery though, regardless of how long it may be. I can't remember ever being normal. The last 10 years kinda got away as I didn't realize I was slowly creeping away. The breaking point was when I went on an extremely low dose course of Isotretinoin and POW!! Everything accelerated. It lowered my immune system, allowing the bacteria to thrive but at least now I know. It was confusing at first because I thought I was experiencing side effects of that medication but I didn't understand why as I was only taking 1/3 of the recommended dose.
Thanks!
Just to clarify, I had herxes when I started a new medication. My doc rotates them regularly as it creates an ongoing attack against the bugs. When my pace of progress would slow, I'd get a new abx. When I started Biaxin at the 6 months mark, I didn't notice any herx. But when I started Clindamycin at the 9 month mark, I had a significant one.
I did Bicillin shots for the better part of a year, and for the first half, I generally felt a die off in the hours after a shot. After a while, I got to crave the next shot, which is when they upped my dose.
And yes, there are many contributors to fatigue. The disease itself, as well as body chemistry imbalances that result. You can ask your doctor for an anti-fatigue medication. Provigil, nuvigil, and adderall are the most commonly prescribed and they usually help. I've been on low dose provigil for well over a year, and it still helps me. It boosts my heart rate, though, so I had to use it sparingly when my tachycardia was too much. Adderall is cheaper and many insurance companies won't cover provigil/nuvigil unless you have narcolepsy. Adderall is addictive, though. But that's still better than not being functional.
I am sorry you're struggling. I know the feeling! You can help your body by eating as healthy as possible, avoiding chemicals, processed foods, and sugar as much as possible. It really does make a difference. Sugar and saturated fat have both been shown to suppress the immune system.
I did Bicillin shots for the better part of a year, and for the first half, I generally felt a die off in the hours after a shot. After a while, I got to crave the next shot, which is when they upped my dose.
And yes, there are many contributors to fatigue. The disease itself, as well as body chemistry imbalances that result. You can ask your doctor for an anti-fatigue medication. Provigil, nuvigil, and adderall are the most commonly prescribed and they usually help. I've been on low dose provigil for well over a year, and it still helps me. It boosts my heart rate, though, so I had to use it sparingly when my tachycardia was too much. Adderall is cheaper and many insurance companies won't cover provigil/nuvigil unless you have narcolepsy. Adderall is addictive, though. But that's still better than not being functional.
I am sorry you're struggling. I know the feeling! You can help your body by eating as healthy as possible, avoiding chemicals, processed foods, and sugar as much as possible. It really does make a difference. Sugar and saturated fat have both been shown to suppress the immune system.
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I don't think there's an absolute answer to your question, because a short term course of antibiotics can actually help trigger more antibody production as dead spirochetes hit the blood stream. This scenario actually increases antibody production in the immediate term. This is called an antibiotic challenge, done before a Western Blot test, which tries to provoke enough antibodies to show up on the test.
Insufficient courses of antibiotics can leave the tougher-to-kill bugs behind. The spirochetes can hide their surface proteins, which is what the antibodies look for. They curl up into ring forms like a hedgehog curls up in a ball for protection. They also form biofilms to hide in.
In my case, I took insufficient antibiotics when I first got infected. After a week of abx, I got better. Then, I had a relapsing/remitting cycle for nearly 5 years. Once or twice a year I would have "attacks" of severe fatigue, malaise, headache, and loss of appetite. They'd last 1-3 weeks and then go away. The little buggers would go dormant for up to a year! I thought they were relapses of a bad case of mono (epstein barr) from years earlier.
So who knows what effect past courses of antibiotics have had on you. They could certainly interfere with antibody production. Also, Lyme itself can be immunosuppressive. That was the case with me. Twelve to eighteen months ago, I had no allergies, despite a life long history. Blood tests even showed I had no allergies anymore. A general IgM/IgG count showed my immune system was at the low end of "normal." I was really sick with Lyme, Bartonella, and Babesia at that time. My immune system wasn't putting up much of a fight.
This spring, now that Bartonella is gone and Lyme is nearly gone, I am definitely suffering with allergies. Yes, they're back. I am convinced it's because my immune system was suppressed last spring. This year, my immune system is back to overreacting to certain pollens, which is normal for me.
The only doctors familiar with this nightmarish complexity of Lyme are experienced LLMDs. It's rare to find a doctor who isn't clueless about the testing. They trust that the microbiologists who designed the tests and the interpretation know what they're doing. In the case of Lyme, this is a tragically wrong assumption.