posted
Hi - Good for them/you. Do you have a chance to work with them on it? I think there's a number of educating concepts you'd want to get across. Here's what I often run though:
Lyme can be misdiagnosed as 320 other conditions. It mimics nerve and soft tissue disorders and can affect any system in the body.
A general list includes fibromyalgia, chronic fatigue, rheumatoid arthritis, autism, lupus, IBS, MS, ALS, Alzheimer's, Parkinson's, cognitive difficulties, heart disease, etc. (you don't have to list them all - just make a general statement).
Depends on what kind of physicians you're asking about. Lyme-literate physicians recognize the symptoms of Lyme and co-infections and adequately test for and treat.
Nonliterate ones don't. They'll say things like it's all in your head, you're just stressed, and more. But none of it is accurate since we're dealing with actual infections.
When I educate, I say it can be transmitted by ticks, other insects and us via fluids and tissues.
I'd get some stats for your area - percentage of infected ticks and which illnesses are being transmitted.
That some see the tick or ticks and some don't. That some have initial symptoms like a bull's eye rash, flu-like illness, fatigue, numbness or tingling, and some don't have any initial symptoms.
If there's a bull's eye rash, that means Lyme disease for sure, with a need to see a Lyme-literate physician for a sufficient amount of antibiotics.
That there is no gold standard test for Lyme, that there are 27 reasons for testing negative, listed at www.canlyme.com/seronegreasons.html (And list that url - it's very helpful for helping people understand why we can't just test for it).
And the same goes for the co-infections - no perfect test.
That we do have some good testing labs and that people can come to lymenet to get some lab referrals. IGeneX is a good testing lab. www.IGeneX.com.
Thus Lyme-literate doctors treat clinically, by history and symptoms. Treatment includes antibiotics and lots of complementary care options.
That Lyme can develop into symptoms throughout the body.
That there are also co-infections, like babesia, bartonella, ehrlichia, etc. I usually list a few marker symptoms for each.
Have some pictures displayed of how tiny ticks are, the bacteria, the bull's eye rash, a tweezers tick removal pic.
Say something about how to protect people, pets and environment. The CALDA website has a good protection list. www.lymedisease.org. I always say tick repellent is needed on us and outdoor/indoor pets.
posted
The initial diagnoses statements issue is complicated, since people can get symptoms just about everywhere in the body!
So you can imagine how every angle of medicine then can have a heyday with this, trying to tell us that it's this and that for each part of us, and none of it is correct.
That's why I think it's almost pointless to mention all the incorrect statements, because you're just about looking at the encyclopedia of medical statements.
My little example: since I presented with neck and shoulder complaints, I was told, and believed, I had a TOS problem, meaning thoracic outlet syndrome.
But I didn't. I had Lyme, really. See what I mean? If you did this for every body area, you'd have a ton of wrong statements being made.
To me, it makes more sense to give the public the concept that whatever specialty we go to, we don't fit, in terms of actually testing positive for any of their tests, since they're not looking for a bacterial infection.
It's more the absence of fitting a definition than anything. We come out looking like medical mysteries.
So how about approaching the initial diagnostic period via the various symptoms people get, including the list of co-infection symptoms?
Those were the lists I went to look at when I was told I might have this. I looked at the list of Lyme symptoms and saw I matched many.
I think those symptom lists would be useful to the public more than all the wrong statements, since we can't recognize ourselves in the negative list;
we need to see the actual list of symptoms in order to have a sense of whether we fit. That's how I approached it initially, before I got bloodtested.
Also by looking at the co-infection symptoms list, that can give us a clue as to whether we want to test for any co's or not.
Posts: 13117 | From San Francisco | Registered: May 2006
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Some people who were diagnosed (misdiagnosed) with the above conditions were found to have Lyme disease. They were later treated with antibiotic therapy and improved."
posted
i was diagnosed with iron, b12 & vitamin D deficiencies, adult onset allergies, asthma, tension headaches, migraines, and finally depression.
one doctor even told me that my lower back pain was caused by one leg being a "tiny bit longer" than the other and also said he thought i had narcolepsy.
Posts: 95 | From IL | Registered: Jun 2010
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