Aa
How do we keep from looking like a nut case?
How are we supposed to keep from looking like a nut case when all the testing keeps coming back normal or insignificant/inconclusive?
The most I have is some small neurological abnormalities. And new beginning loss of peripheral vision in my left eye, that causes me to run into things on that side. I think that would show on an eye exam.
No big things on any testing thus far. No igenex test yet.
And I get the feeling some doctors do not believe a word I say after they see a bazillion blood tests and CT and MRI were normal. Add in the fact I am young and fit, and that pretty much has me written off before they even shake my hand.
How are we suppose to combat this?
The most I have is some small neurological abnormalities. And new beginning loss of peripheral vision in my left eye, that causes me to run into things on that side. I think that would show on an eye exam.
No big things on any testing thus far. No igenex test yet.
And I get the feeling some doctors do not believe a word I say after they see a bazillion blood tests and CT and MRI were normal. Add in the fact I am young and fit, and that pretty much has me written off before they even shake my hand.
How are we suppose to combat this?
Hi again -- I just posted another message to you about contacting a poster from a while back to answer some of your questions.
About Rife: I never tried it and was treated only with oral antibiotics. I had Lyme disease and another infection (babesiosis) which is sometimes also carried by Lyme ticks. The antibiotics I took were different for Lyme and for babesia, and babesia was treated first for a few months, then when it was gone, I was treated for several more months to get rid of Lyme. It worked well, and although it took a while after treatment to feel entirely like the 'old me' again, it worked!
The most important part of the treatment was finding a wise and experienced Lyme doctor who knew how Lyme and its companion infections operate and how to kill them off for good.
About Rife: I never tried it and was treated only with oral antibiotics. I had Lyme disease and another infection (babesiosis) which is sometimes also carried by Lyme ticks. The antibiotics I took were different for Lyme and for babesia, and babesia was treated first for a few months, then when it was gone, I was treated for several more months to get rid of Lyme. It worked well, and although it took a while after treatment to feel entirely like the 'old me' again, it worked!
The most important part of the treatment was finding a wise and experienced Lyme doctor who knew how Lyme and its companion infections operate and how to kill them off for good.
What did you find that worked? I read some old posts and was very curious if you had success with the rife machine?
Mojo's right -- there is a split in the medical community about how to diagnose and treat Lyme disease and other bacterial infections often also carried by the Lyme ticks.
The earliest docs to study Lyme disease determined that Lyme was a simple bacterial infection not basically different from many other such infections, and the usual short term antibiotic treatments (like doxycycline for a few weeks) would be sufficient. Unfortunately, those docs were wrong about Lyme, but the field of modern medicine is so broad that no one doc can know everything medical ... so the docs fragment into specialty areas. That works all right ... until it leads MDs to put up barriers in their thinking, to the patients' detriment.
Your last sentence, that 'the ER still acts badly' -- does that mean the red circular rash that may appear in a Lyme infection (ER = erythema migrans)? I'm no doc, but if you're still getting ER rashes, you may not have been treated effectively.
I would scoop up all my test results to date and quietly go get a second opinion from a Lyme specialist, preferably a member of ILADS (International Lyme and Associated Diseases Society) to do a complete reassessment of my medical history and symptoms.
That you are still having ER rashes after three years of treatment would make me (I'm not medically trained!, but I had Lyme and babesiosis) find a different doc. I was cured of my ailments in well under a year, and remain well now, some 6+ years later. Yes, some people think I must be simply in 'remission', with the bacteria hiding for later ... but I have clean tests and no Lyme symptoms AT ALL -- and I was one sick puppy when I had Lyme and babesia.
I would get copies of ALL my tests from the current doc and quietly take a second opinion from an ILADS doc after you scout for their reputations. The internet is your friend in this regard.
Some people have scoffed when I say I am still well, with totally clean test results after quite a few years... but well is well. I would in your situation get a fresh work up from a different Lyme doc. Get copies of *all* your old tests, not just summaries (you are entitled to them by law, I believe) and go get a second look from another Lyme doc. It's what I would do for myself and my family, and I wish all the best for you.
The earliest docs to study Lyme disease determined that Lyme was a simple bacterial infection not basically different from many other such infections, and the usual short term antibiotic treatments (like doxycycline for a few weeks) would be sufficient. Unfortunately, those docs were wrong about Lyme, but the field of modern medicine is so broad that no one doc can know everything medical ... so the docs fragment into specialty areas. That works all right ... until it leads MDs to put up barriers in their thinking, to the patients' detriment.
Your last sentence, that 'the ER still acts badly' -- does that mean the red circular rash that may appear in a Lyme infection (ER = erythema migrans)? I'm no doc, but if you're still getting ER rashes, you may not have been treated effectively.
I would scoop up all my test results to date and quietly go get a second opinion from a Lyme specialist, preferably a member of ILADS (International Lyme and Associated Diseases Society) to do a complete reassessment of my medical history and symptoms.
That you are still having ER rashes after three years of treatment would make me (I'm not medically trained!, but I had Lyme and babesiosis) find a different doc. I was cured of my ailments in well under a year, and remain well now, some 6+ years later. Yes, some people think I must be simply in 'remission', with the bacteria hiding for later ... but I have clean tests and no Lyme symptoms AT ALL -- and I was one sick puppy when I had Lyme and babesia.
I would get copies of ALL my tests from the current doc and quietly take a second opinion from an ILADS doc after you scout for their reputations. The internet is your friend in this regard.
Some people have scoffed when I say I am still well, with totally clean test results after quite a few years... but well is well. I would in your situation get a fresh work up from a different Lyme doc. Get copies of *all* your old tests, not just summaries (you are entitled to them by law, I believe) and go get a second look from another Lyme doc. It's what I would do for myself and my family, and I wish all the best for you.
Unfortunately you will have to find an LLMD, lyme literate Dr so they can do the correct testing. Most of the regular tests out there fail.
Easiest way is to contact ILADS.org and ask for a Doctor in your area. It is very frustrating. I have been treating for 3 years but the ER still acts badly,
Easiest way is to contact ILADS.org and ask for a Doctor in your area. It is very frustrating. I have been treating for 3 years but the ER still acts badly,
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