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!
Best Answer
Brilliantly said.
Thanks for being so helpful!!
So if I've took antibiotics off and on for the last five years, do you suppose it could suppress the results? Even if I'm taking antibiotics at the time of the draw?
The physicians where I live are completely clueless.
So if I've took antibiotics off and on for the last five years, do you suppose it could suppress the results? Even if I'm taking antibiotics at the time of the draw?
The physicians where I live are completely clueless.
Have you considered finding a new family practitioner? Sometimes a new doctor is willing to order some tests for a new patient. You could tell the new doc that your last doctor didn't have any answers for you, and you'd like another opinion, a fresh look.
In many states, insurance companies (and this is probably true for Medicare/Medicaid, too) are required to cover tests and treatment that the doctor believes is necessary. Many doctors don't want the scrutiny that can come with ordering tests they can't honestly say they thought were necessary. (Never mind that they'll order a whole bunch of tests for you when they don't know what's wrong. They just won't order a Lyme test when they aren't convinced you have it. It's part of the ridiculous bias against Lyme Disease courtesy of the IDSA and the CDC. The CDC actually says on its website that doctors should not order a Western Blot unless the ELISA is positive.)
My doctor signed my IGeneX order form when I went in to see her in terrible pain. She was shocked at how bad I looked and was very concerned. I gave her the brief story of my sojourn through the pulmonologist, allergist, ENT, and neurologist while I deteriorated quickly. I told her none of them had answers for me and I was sure I had Lyme Disease, even though I tested negative on a screening test. I handed her the form and said I wanted to get tested at a specialty lab and I didn't feel the need to get insurance approval because I didn't have time. I was desperate.
She hesitated saying she thought my insurance should pay for it. I said I didn't care anymore and that perhaps they'd reimburse me for some of it later. (They did, about 2/3 of it.) She signed it right then, I think in part because she didn't have to justify it to my insurance company, but mostly because I was such a mess. I had a history with her going back more than 10 years. She knew I was desperately ill.
I have not done a CD57. While most long term Lyme patients will show low on it, most doctors have never heard of it and it won't mean anything to them. The CDC does not even accept that Lyme suppresses it. If you want proof of Lyme, an IGeneX western blot is probably your best bet.
In many states, insurance companies (and this is probably true for Medicare/Medicaid, too) are required to cover tests and treatment that the doctor believes is necessary. Many doctors don't want the scrutiny that can come with ordering tests they can't honestly say they thought were necessary. (Never mind that they'll order a whole bunch of tests for you when they don't know what's wrong. They just won't order a Lyme test when they aren't convinced you have it. It's part of the ridiculous bias against Lyme Disease courtesy of the IDSA and the CDC. The CDC actually says on its website that doctors should not order a Western Blot unless the ELISA is positive.)
My doctor signed my IGeneX order form when I went in to see her in terrible pain. She was shocked at how bad I looked and was very concerned. I gave her the brief story of my sojourn through the pulmonologist, allergist, ENT, and neurologist while I deteriorated quickly. I told her none of them had answers for me and I was sure I had Lyme Disease, even though I tested negative on a screening test. I handed her the form and said I wanted to get tested at a specialty lab and I didn't feel the need to get insurance approval because I didn't have time. I was desperate.
She hesitated saying she thought my insurance should pay for it. I said I didn't care anymore and that perhaps they'd reimburse me for some of it later. (They did, about 2/3 of it.) She signed it right then, I think in part because she didn't have to justify it to my insurance company, but mostly because I was such a mess. I had a history with her going back more than 10 years. She knew I was desperately ill.
I have not done a CD57. While most long term Lyme patients will show low on it, most doctors have never heard of it and it won't mean anything to them. The CDC does not even accept that Lyme suppresses it. If you want proof of Lyme, an IGeneX western blot is probably your best bet.
Thanks!
How did you get your regular doctor to test through IGeneX? The doctor I went to completely believes in initial negative test results even though I told him it was extremely inaccurate.. I have the material for the IGenex test. I just don't know where to go with it. The cost would certainly be an issue too.
I'm thinking about ordering my own CD57. I thought maybe it might give me a bit of a lead without making myself seem even more delusional by more negative test results. The only reason I went to the doctor in the first place is because my symptoms fit a number of other diagnoses such as Hashimotos and Myalgic Encephalomyelitis. So I'm also considering a Hashimotos panel to rule that out, but IDK all this testing isn't cheap. Especially when insurance would pay for it through a doctor. But when I requested for specific testing at this particular doctor, he wouldn't even consider it. I really didn't think it would be a big deal but I guess it is.
Anyone have any experience with the CD57? The problem is, I'm sure it would probably be low with Hashimotos AND Myalgic Encephalomyelitis, in addition to Lyme and a wide range of other ailments too.
How did you get your regular doctor to test through IGeneX? The doctor I went to completely believes in initial negative test results even though I told him it was extremely inaccurate.. I have the material for the IGenex test. I just don't know where to go with it. The cost would certainly be an issue too.
I'm thinking about ordering my own CD57. I thought maybe it might give me a bit of a lead without making myself seem even more delusional by more negative test results. The only reason I went to the doctor in the first place is because my symptoms fit a number of other diagnoses such as Hashimotos and Myalgic Encephalomyelitis. So I'm also considering a Hashimotos panel to rule that out, but IDK all this testing isn't cheap. Especially when insurance would pay for it through a doctor. But when I requested for specific testing at this particular doctor, he wouldn't even consider it. I really didn't think it would be a big deal but I guess it is.
Anyone have any experience with the CD57? The problem is, I'm sure it would probably be low with Hashimotos AND Myalgic Encephalomyelitis, in addition to Lyme and a wide range of other ailments too.
A negative ELISA doesn't mean much. It is notorious for missing late stage Lyme cases. I don't even think they ever tested it's reliability on late stage cases. Some of the Lyme Disease committee members who voted to require it as a screening test hold patents on the ELISA and make money from its usage. That's one reason the Connecticut Attorney General began an anti-trust investigation into the IDSA back around '06.
A Western Blot at IGeneX is your best bet for finding signs of Lyme. In my case, the result convinced my regular doctor that I did indeed have Lyme, even though my earlier screening test was negative. It sounds like you've done your homework. Good for you! Keep digging until you find a way that works for you.
If you're going to take Cat's claw, I encourage you to take Banderol, too. Two medications is usually more effective than just one. Lyme is a slippery and wily little bacteria that adapts or hides or tries to escape from hostile environments. It doesn't give up easily.
A Western Blot at IGeneX is your best bet for finding signs of Lyme. In my case, the result convinced my regular doctor that I did indeed have Lyme, even though my earlier screening test was negative. It sounds like you've done your homework. Good for you! Keep digging until you find a way that works for you.
If you're going to take Cat's claw, I encourage you to take Banderol, too. Two medications is usually more effective than just one. Lyme is a slippery and wily little bacteria that adapts or hides or tries to escape from hostile environments. It doesn't give up easily.
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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.