groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I had a GREAT day yesterday
I live in Austin TX --- Every year Austin has a Really Cool Party called Eeyores Birthday-its been happenening for 43 yrs--
Ive been to 21 of the parties but yesterday was the First Time I felt Good-
Its gotten Real Big threw the years- about 40 to 50 thousand folks meet at a huge park that is in centrial Austin---
The weather was Perfect-- I got there at 2- goes till dark--
The music was great and there was at least 10 Huge drum circles-- and they were in the groove -- I bet there was over a 1000 drums there today- Austinites are into drums--
The park that its held in is about 1 and a half miles square miles - has hills and many big trees-grass--shade -
I bet I walked over 12 miles -- Ran into 5 different people I havent seen in years --
You can bring- ANYTHING -you want- so all kinds of Fun stuff shows up-- Everything is FREE --
Theres a Egg Toss-- the line of contestants is over 100 yards long elbow to elbow- 5 rounds -- -let me tell you there is a Lot of scrambled eggs out there now -- 1000s for sure -- Great Fun -
The same guys have won severals years- They must pratice --LOL --
The Sack race is Cool -- and lots of fun--50 yards - folks can go perty fast with there feet in a bag --
There is a paint tables for the kids- Many--May Poles -- Jugglers -- mud pond -body painting -- everybody gets painted- not just the kids --
Theres A Costume contest -- big puzzles made from wood- swings- jump ropes -ect Tons of stuff to do-
Lots of folks ride bicycle -- Saw a really nice chopper bike- Lots of folks ride the bus or walk--Zero car parking - --not even one --
About half of the folks wear costumes-- all hand made -- I Laffed Hard all day-- folks come up with some Really Funny stuff--
The Eeyores has a Really Cool Groove-- Reallly Layyyed Backkkk -- No Cops at all-- Not nessisary --
Being a single guy -I got to meet many pretty girls --was great --
For the last 8 yrs I have been video taping the party --
I have made some perty good shows from my footage-- Won a award last year and my film shows at the new city hall on the plasms screens daily -
Let me tell you that holding a video camera for 8 hours is perty hard work-
its not that the camera is heavy- its you have to hold it Very Still -- Poops me out-- I shot 4 hrs of tape--
I talked to a couple of hundred folks -- and made some new friends --
I had a Great Time ---
You can see more by googling --EEyores Birthday Austin---
Now let me tell you about myself-- I got Lyme and Babs here in Austin 20 yrs ago -- 2 yrs after I moved here- --I got Real Sick Quickly--
Threw the yrs I have been to over a dozen doctors-- None of them had a Clue --
Im a detail kind of guy -- so I took a Complete Symptoms List to every duck that I went to --
I Now know that it was a Complete Lyme Symptoms List -DX -
They should have known -- something was very wrong with me but most looked and talked at me like I was crazy --
I wish I could get All of them a locked room- Now -- They would have a -- Whole New Out Look on Life --
So I went down hill and suffered extream body pain - exhaustion-- I looked Terrable --Felt offel-- Felt like I got Beat Up Every night -
When I did get some sleep I wished I would not wake up -
After a few yrs I could only work part time and then I had to quit my job-I just could not do it --
I havent slept in 20yrs- Had drenching night sweats-- Candida out the cazoo --
On a scale of 1 to 10 I hovered around a 8 or 9 most of the time -- I was sick as Hello --
Thousands of time I thought about doin myself in -- a bunch of times I would have done it but I was to sick to get out of bed --
About 3 yrs ago I figured out that I have Lyme by seeing a TV show about a Broadway dancer who got very sick-- Quickly --
Her symptoms matched me Exactily Big Lyme Bullseye and All--- She had Lyme --
So I started researching lyme-- In a week or two I found LN -- SAVED MY LIFE --For Sure --
I took the info I gathered the up and went to My Doctor-- I convenced him I had Lyme --
He is a Really Cool man -- one of the Nicest people I have ever met -- He is simi retired and is a Great doctor but he knows little about Lyme-- Its not around here --Ya know --
He put me on Doxi 200mg a day-- It help and I did get alittle better- I upped the doxi to 600mg aday and I got --More Better --
I was still Very sick tho -- Looked like a Loosing battle to me --
A year ago--January 6- I made my self a promise that if in one year I was not any better that I would end all of my suffering-- I just could not go threw this anymore --
I dont think there has been 5 minutes total in the last 20 yrs that I was not wrenching pain--
To go to Eeyores I would have to rest a good week before and after-- Was really hard to do--
Well about a year and a half ago I found a LLMD here in Austin -- Very Lucky--
Took 5 months for my first visit- She is Very Buzzy --
She did tests (Igenx) and they came back--IND--
She said that I have Lyme and have Babs written all over me --
Put me on Mepron and Biaxian--
I felt Better in 3 days --
Its taken about 9 months of Good Treatment to get feelin Perty Good - Most of the time --
Its been a Perty Ruff trip-- When I herx I get Killer Migrains- the last big one was 19 solid day of head squeezing pain -- I got about 5 minutes sleep -Ouch -
(Read my Head Clamp post-- its perty funny--)
I deffently got Sicker before I got Better --
Now Im doin Perty Good Most of the time --
My LLMD tells me I am one of her prize patients -
Wants me to be in a movie they are making about what it takes to Get Better from Lyme--
Let me tell you a couple of things I learned threw this Tuff Jorney --
You Have to Take Control of Your Situation -- Nobody else can do it for you--
You HAVE to edgucate Your self-- Knowlage = Getting well again --
If you did only 1 week reasearch- on Lyme the Odds are that you will know more than 95% of doctors out there about these dieases --
You are probelly going to have to teach your doctor about Lyme ect- I had to -
Do what You Have to do to get help -- If your doctor is a duck -- Move On---dont waste time --
You Will Know when you find - --The doctor that will help you -- I Did -
Check for Co Infections --For Sure-- Most folks have them -- This is Very Very Important -
DONT Relie on Test Results-- ALL of the current tests are Very Poor--at best--
I give them ZERO weight in my dissisions --
All the tests that doctors gave me threw the yrs Always came back Clean --
All the ducks said to me- You Look Fine -
This I becaused they relied on the test results 100% --So I got screwed--
Dont be Scaired of ABX- No Reason --
Take your meds on time-Important-- Dont miss any--makes a Big differance-
You have to Eat Good-to be Good- No carb diet is Best - Carbs are not worth the pain and problems they Will cause --
There is not many things that you are going to have complete control over- But what you- Put In Your Mouth-- You have Complete control over--
Drink Tons of water and tea-- In the time its taken for you to read this you should have downed a Big glass of something--
Rest as much as you can--
Quiting my job last November was one of the Best things I have done --Stress makes it Much harder to get well-
Threw the yrs I saved up some money so that if I Ever figured out what was wrong with me I would be able to get help -- and be able get the rest I knew I was going to require to get well again
Well All my bucks are Gone Now-- Was worth Every Penny tho --
Speaking of Money--
Buy your meds in Mexico -- Same meds as in the US-- Way Way Way Cheaper --
No perscription required -- No Doctor Hassell-- Sweet-
I spent about $1000 in Mexico- Saved me about $12,000- Im not kidding --
Its worth catching a flight to a border city- stay in a hotel --aday or 2- Will save you money- For Sure --
I go to El Paso-- Thats where I from so I know my way around --
Saying its Easy To Get Meds in Mexico is a Understatment- Big Time --
There are cheap hotels 2 blocks from the Border-US--
Walk across -Dont Drive--
The pharmicas are the first bussiness you will come to after you cross -- Dozens of them--
You can get Name Brand and generic meds--
I try to get the Name Brand- I have found them to be more effective than generic in both the US and Mexico--
I have always been a believer in-- If a little is good --More is Better- and a Whole Bunch is Best--
So far this has worked very will for me --If you go this route -- you Have to drink at least 3 gallons of water a day to keep from getting toxic--
With out Mexico there is no way could have done this--
AmTrack goes to EL Paso -- so if you feel good enough- Its a fun way to travel-- The train station is 2 blocks from the border--
If you go to EL Paso I can tell you where to get the Best Green Chucken Enchalads I have ever eaten--Awsome --
I can also answer any questions you have--
I have written many posts about buying meds in Mexico-- (Sunny Vacation to Mexico) is one- -----------------------------
You also have to keep a Positive and Optmistic Attitude --
If you Allow lyme to Take Control of your mind--It Will -- Its not easy - but you can do it-- I Did --
Its Very Easy to allow depression to take hold of you-- It happens Quickly-and it could be very hard to dig yourself out from this-- So Dont go there--
You need to Realize that we (you) are Perty Much genipigs-- Now--
Not much is known about how to treat these diseases--
It took me about 3 weeks of research on Lyme for me to figure out I was going to a Pioneer Genipig--Ouch--
I am very glad I figured this out Earily --
One thing that is VERY VERY Important to do is--
Post a COMPLETE SYMPTOMS list here on Lymenet--
I Sure wish I would have done this when I First Got Here --
The Eaisest way to do this is to Copy and Paste --DR B's symptom list--
When you do this dont just answer the questions --Yes -No-
Give more details like - Only at night- pain moves around - my tempature is 93- for 3 months--
Fill in your info underneath each Question--
Give Complete-- Clear Answers--
Describe intencity of symptoms like 1 thru 10 ect
Make it Easy to Read-- You want to Make It Easy - For folks to help you--
Remember we All are lymees here-
At the bottom of your symptoms list Give-Any and All-- other info about your situation like- age -general health any thing else you have wrong with you--
Include things like - what other doctors have thought- What meds you have tried- Results if any--Include doses and time -
Give Test results- give numbers --
Describe any type of skin rash carefully- post pictures --
Give All info that you think could help-
Post your Symptoms list-- Many Times-- Doing this will allow long time LNers to have a chance to see your post-
People will be able to get a Good Clear Picture of your situation Quickly- Easily --and Help You--
Most folks who get over these Illness at some point are going to get On with there Lives and wont be coming to LN much anymore --
You Really want these people to see and read your posts --
I think the vast majority of folks who have lyme desease are going to regular Ducks- and are getting the run around- -It happened to me for 17 years--
Dont Let this happen to you--
Just One visit to a Good Doctor - change my life Quickly-- and I got Much Priceless Info from the Great folks here at LN -
If LN was around 20 years ago-- I would have been All Better many years ago ---
You can get Well Again--
It Takes a Good Attitude lots of reading- Good food -Rest - some Luck and a Huge Pile of meds --
There is Life after Lyme-- and it can be Perty Good to--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Right on, Groovy!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Wow, very intelligent, very well written and very useful.
I saved it for my guidance.
I pray for more posts from you.
It's the best way you pay back LymeNet.
If I am cured, I'll take you as an example and come back often to help others here.
posted
Congrats Jay! So glad you're doing great! Keep it up!!
Texans always know how to throw a good party!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I really needed to hear this tonite groovy.
Thanks for comin' back and reminding us that we can make it outa here eventually!
PS--eat some enchiladas for me will ya? California has AWFUL mexican food, I like mine red, but a nice hot green is always a pleasant change of pace. Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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U better not disappear from this board when you are all better.
I just saved 40% on Biaxin by driving to Canada. ($325/mo in US) Much closer than Mexico for those of us up in New England. Maybe not as cheap as Mexico though. I get the brand name. I tried the generic and found it serously inferior. My LLMD said many others told him the same. Also, no Enchiladas in Canada and Maple Syrup is not on the anti yeast diet. Oh well.
I agree, positive attitude and avoiding stress is key - hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
WOW
Jay that is the best news ever!
You are an inspiration !
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Hee hee, Jay now you've joined the ranks of the old timers who are charged with the responsibility to come help when you can.
No telling what we can all accomplish when we put our Bbrains together.
glad you're in remission now let's get everybody well.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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