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Hi!!! My Lord, our story is SOOOO long, but I'll try and give ya the short version, and then if you have questions, feel free to post them....

My son was 5 when he got sick, and it was december22...never forget it. He woke up in his bed screaming for me to help. He could not move without excruciating pain. Finally had to give up the denial and call 911. He was kicked out of the 1st hospital with a phoned in dx of tooxic synovitis of the right hip! BS, of course!! The kid was transported via ambulance, but I was supposed to take him home...no better??? they doped him up majorly, I reclined the van seat all the way back, strapped him in, sobbing and furious while he screamed out in pain and drove to another hospital.

They immediately admitted him, and he was hospitalized the next two weeks, over Christmas and New Years, as "mystery illness boy." (wow, loved that!!) He had 37 blood draws during that time. Yes, I really remember. lol.. Everything was negative for Lyme of course, but things like platelets, ASO, ACE, and sed rate were thru the roof. White count was normal at this stage in the game, too.

Pediatric rheumatologists, ID specialists, cardiologists, hemotologists, oncologists, neurologists, all consulted during our "r/o process." JRA, Lupus, lymphoma, leukemia, Kawasaki Disease, Strep, and a virus were played around with as possible DX, as well as septic arthritis, toxic synovitis, and I'm sure more I have blocked out.

Over that time, he rashed, he welted, he raged with fever. He could not walk until the last day we were there, adn that was like a little old, frail man. He did not eat, he moaned, he slept. I vomited and prayed and cried. Got psycho a couple of times on the docs, passed out once when they brought in an oncologist. Worst time in my life, and I am actually crying while typing this---still hurts bad!!!

Major f/u later, with all kinds of docs brought nothing, and he still was sore, tired and had some serious dryness of the mouth and eye problems would projectile vomit out of no where, pee mucus, get violet h'aches, anxiety......, not my son!!! Foggy, slow, etc.. Something was wrong. Mom started going psychotic with research. I WAS GOING TO FIND OUT WHAT WAS WRONG IF IT KILLED ME!!! First I found Sjogren's Syndrome,....Then I found Lyme Disease..... AH HA!!!!!!!!
I took him to Children's Natl Med. Center in DC, John Hopkins University, Inova Fairfax, NIH, and everyone DX something different. I was put on meds for being a "neurotic mother." Good old cocktail of anti depressants and anxiety meds!! Hello??? My kid is sick and you people are doing nothing, and you wonder why I am crying, exasperated, yelling at you??? EERRGGHH!!!

The next three years were spent quitting my job, finding Charles Ray Jones, in CT, traveling, and spending LOTS of money. We saw another specialist in PA for a time, but he was weird, so not even going to waste your time with him. Dr J called it a "toxic onset" and that he had seen it before, but not much. He DX with Lyme, and later was able to back it up with iron clad results. He had some brain involvement, spine, cognitive impairment, major neurologic lyme by this point. He lost his ability to read, to focus, to run and play, and even some days--to walk.

Mark has been on Rocephin injections, Zithromax, Mioncycline, amox, Ceftin, Some other sulfa drug, and various herbs and detoxes. His regimen with Dr. J was 2000mg a day of Biaxin ES, and 600mg/day of Omnicef---both split in half, morning and night. He added Plaquenil at the end to blast the crap out of it, adn he was cured!!!! Dr. Jones is a saint. Love him.

The only lasting effect Mark has is that he cannot sit indian style comfortably anymore...that is IT!! There's lots more to his story...

The spraying blood all over his desk when his teacher wouldn't let him get a drink, the pulling him out of school for a time, his dad leaving b/c he couldn't stand the devotion I gave to this disease and getting him well, the long nights full of panic, the school battles, the travel, and the fight to be believed by classmates, losing friends, the constant research, etc, etc...I could go on forever.

Point is, he's well, and I wouldn't change what I sacrificed to get him well one tiny bit!! We do whatever we need to for our kids. I made up my mind when he was in the hospital way back when he was 5 and SO sick---If he had an illness that was going to stay, but he would live, I would be the best mom of any kid with an illness ever even hoped to have. I would take the best care, give the right amt of love, and tough love to help him cope on his own, and help him thru it...just begged to keep him with me. God let me keep him, so I did what I need to do. No regrets at all. I think Mark is a better person for what he went thru,anyway. He has a unique sense of compassion for people and the underdog he may not have had otherwise.

BTW--we never saw a tick. Never saw a bullseye rash until one day, a while into the disease, he had at least 50 all over his body, like target stamps in bright red. They looked fake. OK---SO long already...write with questions..I'l answer any I can





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