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08/08/2010 07:43 AM

I had One of a Hell of a good time getting Lyme

buzzsflybox
 
Posts: 2
New Member

My "Protocol was straight ABXs. No supplements except DHEA which is an over the counter hormone proven to improve brain function. I have tolerated ALL the ABXs ever prescribed and my liver panels have always been GREAT. (I'm one lucky man, aye?)

Started in Fall of 2005: Been on Xanex since day one. Now tapered off to a 1.0 pill a week. Doxie and BicillinIM, switched Doxi to ceftin, Then Ketec & Bicillin IM. This was all in 2005-Spring/Summer of 2006.

Down 30 Lbs (When I was hospitalized in a local Duel Diganosis Unit for 18 days with neurological and health "Issues". I hadn't slept for 6 days and nights and was out of my mind with all the sleep deprivation related problems.)

I didn't see any improvement until I was put on a PICC with 4gms of Generic Rocephin 5 days on 2 off & Ketec. Then after 4 months of that Doc switched me to 2gm 4 days on 3 off.

In 2007 I started urinating blood and was informed I had bladder cancer. I had an operation where my bladder wall was "Scraped" and the cancer had not metastasized. The biopsy proved me "Clean" and my quarterly "Scopes" since, have all proven me "Clean" TG.

I just stumbled around aimlessly on swollen ankles, & knees, bumping into the walls of the hallway, with the constant "hangover from HELL", and VERY cognitively impaired. Then Doc put me on Zithromax and Rocephin by IM, & Tindamax.

I slowly improved until Nov of 2009, when Doc put me on Riphampin, as well as the Zithro, Rocephin, and Tindamax.

Then; about the 1st week in May of this year, somebody flipped some switch in Heaven and I woke up with a slight drug hangover for about 1/2 hour from the sleep meds, and I felt NORMAL!!!!!!!!!!!!

I haven't had any Lyme related symptoms since. TG! That's my "Protocol and a very "Minimized" list of symptoms. I will say I have had 24 of the Burriscano list of 36 though.

As I said, About November of '09 "I turned the corner" with Lyme and started to have more good days than bad. My body was atrophied by over 4 years of doing nothing. So doing anything strenious was quite a task. I started fishing again. But only every other day. My right knee needs replacing due to an injury long ago. The Lyme just made it worse. I plan to nurse it through the summer then in Oct. get the surgery done. I'm 100% healthwise.

Update 07-22-10. Doc cut my ABXs in 1/2 Again!!!!!!!!!!!!!!!

I'm still on the Abx. but tapering off slowly. I have a GREAT LLMD, who doesn't make ANY radical moves. He has seen me through the most horrid times. But I'm a "Good soldier" and follow his instructions religiously.

BUT. On to "WHO" I have become: I awoke yesterday morning feeling like I had sunshine bursting from my heart. I was grateful and thankful to God for being gifted with my present state of health and my past and present life. I felt euphoric.

Looking back with almost total recall; (Prior to 'fall of '05) I realized that I lived worked & and played in epidemic or endemic areas for the better part of 7 years. I never got a rash. I never saw a tick on myself. I see now how I became afflicted and was told::: Lyme was God's way of slowing you down boy.

I see that I have crammed at least 3 normal man's lifetime's experiences into my one lifespan. I slept little. Worked and played VERY long and hard. It seems I have a true story for almost every life's experience. THREE famous published authors Al Caucci, Bob Nastazi, and Peter Kaminski have all said I should write my autobiography.

While in Key Largo, I met & entertained John Grisham with a few stories as he, I, and "The Heidi Fliesh of New Orleans" fished, floated, & ******, and drank Maker's Mark Mint Juleps on her 46' live in/on "Boat". (No. John was NOT included in 3rd activity)

In 1999. I had just taken "early retirement" that past winter. I got a job at the Delaware River Club I was Working there and on getting my NY State Guide License, being the Campground Host, maintenance manager for the resort/outfitter and "Learning the ropes" in the Upper Delaware River & the Catskills Fly-fishing "Industry", socioeconomics, and culture. WOW! What an eye-opener.

As I know now, that world of professional fishermen is a world without a middle class. (Like the FL Keys) Simply the people with "Money" and the people who provide goods and services to them. But! A world where if your smart; a man can skillfully slide in and out of by trading information for "Favors". I lived the life Jimmy Buffett wrote songs about. Met people Grisham wrote books about.

And learned, taught, befriended, and experienced many famous authors. I picked their brains and they picked mine. Because I am one of very few men who knew the Delaware River system and all it's eccentricities. I was fortunate enough to have floated and fished the system from it's glory days in 1972.

Without bragging; I knew every rock, and place fish would be in any stage of flow or seasonal quirk. And knowing those things made it easier to absorb to lessons taught me by two of the BEST and well published authors on fly-fishing entomology, who befriended me. Al Caucci and Bob Nastasi. Al and Bob wrote the "Bible" on fly fishing entomology in about 1971. "Hatches" was followed by several books which were just revisions and/or updates of the original.

Bob was the visionary, finder of fact, and inquisitor. Al was the one who put Bob's visions and work into print. . Al owned and operated Al Caucci's Delaware River Club, Resort & Campground, and Al Caucci Fly-fishing. (School and outfitters) Two separate financial enterprises.

For several years prior to my retirement, there were times when Al and I sat on the bank of the river or at the bars in the Poconos or up the river we spoke of my working as a guide and instructor for him when I retired. I never thought that would actually happen.

But; upon my early retirement in January of 1999, I called Al and he gave me just that opportunity. I served one year as an indentured servant and student. I rowed Al and his famous clients and stole with my eyes and ears every trick and bit of knowledge imaginable. I lived in my 33 foot Citation trailer for free 75 foot from the bank of the West Branch of the Delaware.

Little did I know that Sullivan and Delaware counties just accross the river, in NY are listed as epidmic by the CDC. All I knew about Lyme was that It caused your joints to ache and you got tired easily. I networked, and rubbed elbows with the fly-fishing elite. I fished the best parts of almost every fishable day and created a deep bond with Bob Nastasi.

Bob was a chapter in my book of life by himself. One of my dearest friends and one of my mentors. Bob also had his camper and lived in it there from March to late September. We fished, (I rowed and drove) tied flies, and spent countless nights swapping stories around the obligatory campfire until his death in 2004. Bob was the personification of the nutty professor.

I lovingly took care of him and the earthly things for him as his mind soared, solving and explaining many of the mysteries of the fresh & saltwater world fish live in and their often peculiar & persnickety behavioral habits. I was honored to be one of the very few people he or his wife let near him that first year after his transplant because of the required auto immune suppressing drugs and their fear of his catching a cold or flu and monitoring his diabetes.

His passing left a hole in my heart. I can't say much more than that now; except that he also changed and enriched my life for being in it.

I met a charming,beautiful, wealthy woman in '04 who showed me a lifestyle of which I had only dreamed of. We lived for 2 years in New Hope, PA (Bucks County) An epidemic county I believe. I spent countless hours landscaping, prunng, brush cutting, and weedwacking. I would now wonder how I didn't get bitten there at least once or twice. I do not blame her for being incapable of dealing with my having Lyme and it's resulting behavioral changes. She had a life to live and our relationship was ended. Nuff said.

Pre-Lyme, I excelled at almost everything I did. I HAD a very high IQ, I was told, many times; but that is untrue. Like that guy who won all that money on Jeopardy said: "I'm not smart. I just have a good memory." I HAD outstanding hand & eye co-ordination. I WAS very athletic and until Lyme, the body of an mind of a teenager. My proudest moment in my career came in June of 2008. 10 years after I had retired. Upon telling a young man I had never met, my name & that I was a retiree; He replied "Your not a retiree. Your a legend."

In the summer of 2005 I could do 100 pushups, 100 sit-ups, 26 chin-ups, get horizontal on a vertical beam for a 10 count, and could when I chose, back row a 450 lb drift boat, loaded with 2 other people and gear 11 to 13 miles of river 7 days a week.

I NEVER looked "My age" and won at least 20 drinks when I proved my age with my driver's license.

I even made the "Cover" of Flyfisherman Magazine. Several multi-millionairs had even said they would exchange their life with mine.

My late 40' and most of my 50's were, except for being a father and raising my childern; the best years of my life. I chased countless fish from the Rockies to Long Island Sound and Key West. It seemed I had money to burn and LOTS time to "network" with other fishermen, "Guide Groupies", and "Mermaids" from New London CT, to Key West, FL.

And throughout my life the thrill of the perfect cast, the perfect float or retreive, and the perfect set of the hook have all been mine more than any man deserves. I was blessed with a passion for fishing and it has been that force which has lead me to places and experiences I never would have had.

I've lunchoned at Tavern On The Green, Club Long Island, and the Old Saybrook Inn. Tasted the finest wine, foods, and bourbon any man could want for. And had beer thrown on me in Shithole Biker Bars in Long Eddy NY and Long Key, FL. I appreciated both ends of the spectrum for what they had to offer. I spent 2 Fall seasons with my beautiful 2001 Triumph motorcycle, mating on charter, lobster, & crab boats out of Key Largo.

Spending almost every night and many days in infamous Tiki Bars all over the Keys, such as Hemingway's Sloppy Joe's in Key West to Bogart's Caribbean Club in Key Largo.

For 8 seasons, I snowmobiled with and "wrenched" for my son as he raced snowcross, and I toured or pounded up to 2,000 miles a year on snowmobiles. I can only use the example of the adrenilin rush of a rollercoaster ride which lasts all day or night's ride.

And I can't find the words to express how sureal that riding a snowmobile trail on a frigid, crystal clear, moonlite night with ice crystals sparkeling in the bright white headlight. I've had "Snow Bunnies" from Maine to Michigan and 2 provinces of Canada.

Clint Eastwood said in a recent AARP article something to the effect that we can't all achieve greatness but that we should try our best to enjoy the years on this earth. I have done that. My proudest accomplishments are my son and daughter. Their positions in life are at least partly because I did as well as I could parenting them.

All the "Damage" to my body, except Lyme and bladder cancer, was done by my own hand. Even the pains I now experience can conjure up fond and vivid mind movies of their origin. That is how I rise above this, I keep breathing one breath at a time, & placing one foot in front of the other and trudge on.

Now, when I get "Down" I simply pick up some printed material or turn on the radio. It will trigger a memory in it's era and I can escape to a pleasant place and time in my past. I'm blessed with almost total recall. I can only pray it stays this way. I fear it won't.

I'm a flawed soul with with many foibles. But my heart is pure. I wish no ill on anyone. And now can even close my mind to man's inhumanity to man. Because I know that I can't change anyone's behavior but my own. And, I am now living "The Golden Rule" , The "Ten Commandments" and a "Don't ask. Don't tell" life.

Simply because I know it is the right thing to do and usually simpler and less complicated. I don't lie, cheat, or harm anyone intentionally. I don't know for sure if there is a Heaven and hope there isn't a Hell.

I have nothing to sell anyone and I don't advocate anything but Abx for the treatement of Lyme. I have learned many things about Lyme and If I can help anyone get through one more day. Or offer HOPE to anyone is my only goal.

Because I have nothing to hide and the above listed lifestyle; my Email address is buzzsflybox (at) verizon.net If ever anyone wants to contact me for anything but to sell me something.

Post edited by: buzzsflybox, at: 08/08/2010 05:09 PM

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08/08/2010 03:37 PM
Bettyg
 
Posts: 32197
VIP Member
I'm an Advocate

welcome buzz Smile

sorry, but we can't read your post since majority of us here are NEURO LYME; we need short 1-2 sentences MAX; HIT ENTER TWICE after each sort 1-2 sentence paragraph.

please edit your entire post breaking it all up; then you'll get some readers/replies. i have to just quit and go on to others i can read.

so please refer to my welcome letter sent to you in the early am hours ok. big thanks Smile hugs

bettyg, iowa group leader/activist

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