Tuesday, March 8, 2011

So, what's the deal with this Lyme thing anyway....

A friend of mine is having nebulously ill symptoms, and her doctors cannot find a thing wrong with her. She is truly having the symptoms, though, although tests have shown nothing thus far.  She's having everything weird going on, from strange aches and pains and extreme fatigue, to insomnia, to this weird rash her doc thinks is ringworm and keeps treating, but it only returns a while later.  She feels like she has a sinus infection all the time, and has what we Southerners delicately call "intestinal troubles," and her doctor is testing her for chron's and Rheumatoid Arthritis, and Fibromyalgia, and Chronic Fatigue Syndrome (as much as there are tests for those things, which basically mean "I have to acknowledge that you really do hurt and feel nasty, even though I cannot find a thing wrong, I believe you are not lying."). She is getting frustrated. Doctors are telling her that if's she's tired, take a nap, if she's gaining weight, diet more, to severely restrict her diet, to go gluten free, to just Get Over It.  No, they don't know why her period's all wonky and she's getting migraines all the time.

In other words,
                        everything on my personal symptom list.

I didn't know all of this last week.  She just posted on FB about how frustrated she was about not being able to find anything wrong, and I mentioned that if she got annoyed and needed to vent about always being sick,. without having anyone judge her or tell her to "buck It Up Little Camper," then she could email and complain to me. I would understand that she had not lost her faith, or her will to live, and I would understand that she just wanted to know WHAT the trouble was so she could do SOMETHING about it.  I figured, it's important for all of sickies to stick together.  It's hard to need to tell Someone that you hurt more today than yesterday, and yet not make it sounds like "whine whine whiny whine whine."  After a while, your spouse really does Not need to hear that, especially when you realize that the sickness is not going anywhere, and, therefore, you cannot make noises every time you hurt for the rest of your life, or else nobody will ever want to be near you again.  (PS great book: Chronic Pain and the Family.. More linkies later)

So, she emailed me her note, which sounds so very much like she was stalking me before I was treated. When she wrote about the "we don't know what it is" rash, my personal alarm bells started buzzing like crazy.  I sent her "the link." The one I share with all nebulously sick folks.  The one that I read and KNEW, at a cellular level, that _this_ was what I was searching to find.  Knew in my bones and spirit that, this illness, in one sickness described all of my ailments.  Gave me the first original thought in years: could it be that, instead of six thousands things being wrong with me, everything, every symptom for a decade fell under one illness.  Well, one illness and co-infections.

So I mailed her the list, link in the sidebar (if I can figure it out) under symptom list, and waited. She immediately wrote back that she felt chills upon reading it, and please tell her more and how to get "the good test."

After writing her back a lengthy letter, I've decided to share it with you, in two parts. It is long.  Hopefully it encapsulates portions of the Lyme controversy, the reasons for reading the symptom list, even if you don't have illness, in order to help safeguard those you love.  Hopefully, if someone you know falls under this vast umbrella, you can pass the list onward to them.  Hopefully, if they read it and feel that bone shaking knowledge fill their heart, they too will feel inspired to find a literate doctor and get "the good test."  Of my eleven (thus far) friends with nebulous and hard to diagnose neuromuscular symptoms, seven (SEVEN!) tested Ignex positive for Lyme, got treated in some form, whether using the antibiotic route or herbal route, and are doing on average much better than they were.  One, this sweet S who received my letter today,  hopefully will be tested soon. 

May you and all of your loved ones be safe from this dragon, Lyme, but if you have no diagnosis are are losing both your mind, your body, and your hope, perhaps knowing more of this information in an easier to read format will help restore those things.  Of the three, the most essential is hope, but getting the other two back is nice too. 

Much love- Tamar

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