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!
Okay <3 I think I will then!
It's so incredibly tough in every way as a single parent drawing absolutely no child support and no personal or financial support whatsoever.
It's so incredibly tough in every way as a single parent drawing absolutely no child support and no personal or financial support whatsoever.
Unfortunately the negative test result doesn't mean much. Most of us got negative results until we found an LLMD who did our tests through igeneX labs where many of us then got positive results.
I wouldn't sit back and do nothing because it gets much worse the longer you wait.
Keep fighting!
Just an update: I just got back from the doc. I have no idea why he wanted to talk to me "in person" about my ct scan, they were just calcified cyst. As for all of my other issues, I'm delusional! Yes!! I'm so relived I don't have Lyme after all, because the ELISA was normal as I expected.
Well, that was completely unnecessary stress!! Now IDK if I should spend every last dime and strength I have fighting? Or just relax with my friend Addy, get some cats claw, and let things go?
Thanks everyone for always being so helpful :)
Well, that was completely unnecessary stress!! Now IDK if I should spend every last dime and strength I have fighting? Or just relax with my friend Addy, get some cats claw, and let things go?
Thanks everyone for always being so helpful :)
I was bit over 20 years ago so mine was a very slow progression until I went through a very stressful time in my life 2 years ago and then it all came on very fast.
Oh, I see!
So was it slowly progressive for any of you? Or was it a somewhat rapid progression?
Beginning with anxiety and fatigue, I was declining at an extremely slow rate that I didn't even notice at the time. I was also suffering from painful adult onset facial acne, which could have caused the anxiety to begin with. IDK if adult acne could be related to Lyme. If not, then it's possible that the Lyme came later than originally thought but the fatigue was a very slow progression. It wasn't till recently that I began having issues with my balance, muscle strength, vision, and bone and joint issues, brain, and such.
Thanks!
So was it slowly progressive for any of you? Or was it a somewhat rapid progression?
Beginning with anxiety and fatigue, I was declining at an extremely slow rate that I didn't even notice at the time. I was also suffering from painful adult onset facial acne, which could have caused the anxiety to begin with. IDK if adult acne could be related to Lyme. If not, then it's possible that the Lyme came later than originally thought but the fatigue was a very slow progression. It wasn't till recently that I began having issues with my balance, muscle strength, vision, and bone and joint issues, brain, and such.
Thanks!
At the time I went on disability I was unable to walk very well, had muscle strength issues, vision issues was full of anxiety and horribly fatigued.
They back dated my disability several years from the time I stopped working so that was a nice surprise to get all that back pay from disability. At that time I hadn't seen an LLMD so my regular doctors said I had chronic fatigue mixed with these neuro problems.
They back dated my disability several years from the time I stopped working so that was a nice surprise to get all that back pay from disability. At that time I hadn't seen an LLMD so my regular doctors said I had chronic fatigue mixed with these neuro problems.
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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.