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Saturday, April 18, 2009

Cat's Biography (FB)

My 25 year old friend Cat is from Charlottesville, Virginia. In the aspects of Tick Borne Illnesses, Cat has

1) Lyme encephalitis (aka neuro-Lyme, late stage Lyme, chronic Lyme)
2) Babesiosis
3) Bartonella henslae
4) Mycoplasma fermentans
5) Rocky Mountain Spotted Fever (we think we finally knocked this one out)

Because of the Tick Borne Illnesses, Cat also faces Bulls-eye rashes (at site of initial bite and during treatment, varying in shape, size, and location), Narcolepsy, Epilepsy, Inappropriate Sinus Tachycardia, Neurally Mediated Hypotension, Hypothyroidism and Colitis

Background Information:
For the whole story visit my latest blog posted, written especially for the readers/prayer warriors on this site, to learn ALL about me, and (thanks to the complexity of my condition) a whole lot more about Lyme disease and its partners in crime!
Please view the special message for you here: http://difficultwoman.blogspot.com/2009/04/for-prayer-warriors-who-are-kind-enough.html

Here is the most condensed version of Cat's story. Her story is so compelling that to cut anything out would be a travesty so here it is in it's entirety. (I have separated the paragraphs a bit more, but here it is as Cat wrote it)

I've had Lyme for 22 years. I was bitten when I was three years old. The initial infection was "classic" - complete with a deer tick, bulls-eye rash at the site, swollen joints, fever, flu-like symptoms - the whole shebang. I was treated with IV ABX in the hospital for two days before my western blot came back negative and the doctors took me off the medication and started to look for other possibilities. Needless to say, they found nothing, and it was finally written off as a "late onset allergy to cephalosporins... which we now know it couldn't have been, because I have taken large doses of them via IV for Lyme.

Throughout my childhood, I was always sick. I picked up various other opportunistic TBDs, though we didn't know it at the time. It wasn't until college that a colleague of my dad's recommended taking me to an LLMD. I didn't buy it, but my dad was insistent and he got my mom involved too, so I gave in and went. What she found was startling. Though she was only ever able to give me six months of remission and diagnose two co-infections before she asked me to find a doctor who specialized in critical care Lyme patients, she did start me down the right path.

I'm still in the midst of a long and painful battle. I have frequent attacks of narcolepsy, Bell's palsy, every kind of seizure, constant pain in my muscles, joints, and bones, double vision, heightened sensitivity (to the point of superhero-like accuracy) to light, sound, touch, and vibrations. It can make me a bit irritable. I can't walk much, and I spend my days confined to my bed. Good days are when I can be wheeled out to the sofa to watch TV. I don't have many of those days, but I thank God for the ones I do. The symptoms and conditions in this paragraph are a few of the things I most need prayers for, but the longer version of this on my personal blog has more specific needs, if you want to learn more. I am grateful for whatever you choose to do -- thank you for your generosity.

Also, here are two specific prayer requests -- related indirectly to Lyme, but they are very heavy on my heart right now... they are also on my blog, but they were important enough to me that I wanted to put them here, too:

First, my boyfriend Phil, who is also my primary caregiver, needs his spirit lifted as much as I do mine. It breaks his heart to watch me suffer, and it breaks my heart to cause him pain. He has taken the best care of me that anyone could wish for these past three years, and I hope he will be blessed with the same level of healing for his heart that I need for my body. He has been my personal angel on earth, so please ask God to send his angels in Heaven to watch over him. I would also ask a little prayer for the rest of my support network as well... my family by blood, and my extended Lyme family; the people who have supported me and guided me through this, even while their own health failed. I am so blessed.

The other prayer I ask for is also related to my health. I recently found out I may have lymphangioleiomyomatosis (LAM... don't worry, even I can't pronounce the proper name -- and feel free to Google it; it's hard to explain briefly, though I tried). It is a genetic disease, passed from mother to daughter, exacerbated by pregnancy, which causes multiple lung collapses, cysts/tumors on the lungs, and eventually turns them to smooth muscle tissue. The only treatment at present is a lung transplant (once the lung or lungs are no longer functional), but the disease will eventually do the same thing to the new lung, so it only buys a few more years. The disease moves less aggressively when it is sporadic, more aggressively when it is inherited. My symptoms onset 15 years earlier than my mother's did, and her mother did not have LAM. So, with no cure in sight, this disease is always fatal. It robs you of the ability to have children, not only because you might pass it along, but because pregnancy accelerates the disease. Both of my mom's lung collapses happened shortly after she gave birth.

I am supposed to schedule tests for the disease as soon as possible, and though I have the orders I have not done it yet because I am so fearful of the outcome. A positive high resolution CT scan would clinch the diagnosis, but a negative one does not rule it out -- it would mean a lung biopsy, of one of the three cysts I currently have on my left lung. It would definitely cause the lung to collapse... and my left lung already collapsed twice, about ten years ago.

Please pray for my mother and I as we wait for these tests and their results. Please pray for our friends and family who are worried about our health. And please pray for us: that we take whatever news the tests bring us with grace, courage, and faith.

If you want to continue following my progress, please check out my blog, http://difficultwoman.blogspot.com/, which I update as frequently as my health allows.

God Bless You!

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Lyme Prayer Chapel Admins

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I am living my life. I've treated Lyme, Bartonella, Candida and Heavy Metal Poisoning. My symptoms were drastically improved after 2 years of treatment. I did well for a year or two and then started having a backslide in August of 2011. I've been seeing my doctor since March 1 2007. I have severe D defiency, but my Iron levels are now normal (after Iron infusions). I'm treating with oral antibiotics currently for Lyme, Bartonella and Babesia. I'm living life as full as I can with the skills that I have and the love I receive. My recent labs showed a very weak immune system and low Cortisol. So we're fighting to bring that back up. Some therapies I'm using are IV Vitamin C, HBOT treatments and herbal remedies plus yeast fighting medicines along with medicines to boost cortisol levels. I've not used the HBOT in a while, but I found it helpful. I'm on a load of oral antibiotics again because the herbal remedies alone were not effective enough. Living life as full as I can with the skills that I have and the love I receive!