I was diagnosed with Lyme about a year ago and was given some antibiotics and then it was kind of forgotten about as my doctors moved on to 'cure' other things that never got cured......eventually I ended up back at my primary care doctor expaining to him, "I STILL FEEL LIKE CRAP!" to which he did another blood array but told me straight up he thought I'd been bit by another tick because my area is so infested.

My tests came back positive....but as there was little he could do, he put me back on the doxycycline and sent me to another neurologist that is starting to specialize in Lyme in Dutchess County to see if she could help. They both agreed that as I'd been sick the entire year and not gotten any better, it was most likely not new, but disseminated and that I should be on an IV. Of course, in order to get that they have to proove it to the insurance company. They sent me in for a spinal tap and made it sound like it was going to be a piece of cake....if you haven't done that yet, clear your calendar that week!! I have sciatica and several herniated discs along the lowest portion of my back so even though they used fluroscopy to help guide the needle, they managed to hit the nerve on the way out after getting three viles of fluid from my spine and I ended up spending the day there with a terrible migraine and it took me days to be able to walk normal again.

At any rate, apparently the doxy was somewhat working because even though both doctors believed the bacteria to be affecting my brain, the Spinal Tap came back negative for the bacteria in my spinal fluid, but the blood they took the same day came back positive.

Apparently the insurance company would read this as the doxycycline is working well enough to keep me on it instead of giving me an IV even though the doctors suspect I will go right back to being just as sick and stay sick as soon as I am off. Of course, if any of you are on doxy, you know just as well as I do we are sick on it as well as off it so what's the dang difference!!

After these difficult results came back, they gave me very mixed emotions. I hope that the doxy is working and that I am getting better, but I don't feel better so I don't know how to feel about that. My stomach is in constant agony and the stress is killing me. I even had to quit one of my jobs because I just don't have the energy to keep up anymore.

The neurologist now felt it was best if I saw an infectuous disease specialist......so I did. She was a little crazy, but in a good way I think. She could tell I am kinda losing it stress wise and put me on paxil to help. She said that it is very normal for Lyme to cause emotional instabilities when it is clearly infiltrating your brain function and your lifestyle. She also gave me some tranqualizers for those really special days but I doubt I will take them as believe it or not I HATE taking medication! Then she asked about my stomach and that particular day happened to be one of the worst ever. She gave me a script to help heal my stomach and told me to stop the doxy immediately. She sent me over to the local hospital and put me on three days of IV antibiotics. She said the insurance won't pay for the 6 weeks that I may end up needing, but they will let me have three days to get my stomach under control and then I can start taking doxy three times a day after that. Those three days, as much of a pain as it was to have an IV stuck in my hand, were the BEST I FELT IN A WHOLE YEAR! The second day, I was so tired. I came home and went to bed after feeding the kids dinner (they're teens, I can do that...) and I slept for 13 hours straight!!!!!! The next day was AWESOME! Then the following day I had to start back on Doxy and I'm back to feeling like crap...........so that's where I am for now~that's my boring lyme story and why I chose the picture I did! I pretty much feel like my life has been taken over by this dreaded disease and I'm just lookin for a little relief and hopin I still have a future!!

Good luck, Denise

I was starting to wonder if anyone was going to even say hi to me on here!! LOL

What is TX?

I am trying to do as much research as possible. I find reading is more difficult these days, which really irritates me as I went spent 5 years as a single mom putting myself through college to be a journalist and research was totally my thing. Now I have trouble remembering the basic rules of english and just trying to edit my own spelling!!

I have a quick question about the western blot. Mine have always come back positive, but I have noticed that most people that are lyme literate say it is a terrible test. Why is that? I tried to ask my neurologist and she looked at me like I was nuts and said that she had never heard such a thing before and it is the best test there is blah blah blah...but everywhere I read online from other people that it is a terrible test. But why? Do they usually come back false? Is that the only reason?

Hope you've all had a great day~

I just want to get my two bits in to your question on the Western Blot testing. I personally in my med records have taken approximately 15 to 20 Western Blot tests. All negative. I believe they were sent to junk labs to dumby down on the testing they were receiving to look like people don't have this disease. I could be wrong, but it sure looks this way. None of them would show any of the bands for the antibodies that were showing or not, it would just say negative over and over again or non-react. It took me 12 years to finally show I was positive, let alone show 9 bands out of the 12 to prove that I am actually CDC positive, with an initial bite documented with a Bulls-Eye rash on Aug. 17, 1995. So much for the Western Blot through these junk labs. You need to have it tested through a reliable lab such as Igenex in California. They have literally saved me a lot of h ll if you know what I mean. The Dr.'s want to make you feel like you are going nuts!! Don't believe them!! Go by your symptoms and find a LLMD ASAP. There is a disclaimer on the bottom of most of the testing for Lyme Disease. Dr.'s ignore this, and just go by your test results alone for the most part. This is what happened to me over and over again. Wish you the best and good luck on getting tested through Igenex or a reputable lab. Take care, Dawn.

I live in New York so I use NY labs and all my western blots have been positive immediately, that's why I wondered about everyone questioning them and perhaps why the doctor I asked about it thought it was a strange question. Maybe we're just lucky here where we live with good testing, I don't know. I also was immediately told what I had before I was tested and that was by my primary care the first time I met him. He is not extremely familiar with lyme, he just see's enough of it come through his office and he's not an idiot. He actually had me go from his office to another to get the tests done immediately because he knew that's what I had. It was when I had to go for other specialty tests on other issues wrong with me (sleep apnea and herniated discs) that the lyme was forgotten about in the mean time. I ended up feeling so crumby, I went back to him and he knew I was still sick. He test right away and contacted some better doctors to help him help me. I have to say, I do feel very lucky that even though I'm being shuffled, I do feel believed. The doctors I have talked to all feel I need the IV treatment but say that I have to go through the 'stupid' protocol first and that's the doxy. None of them think it will work long term though, but they say it's the only way to prove to the insurance company that they can only get me better the other way so that's where I am....taking doxy, feeling like crap and trying to prove to my insurance company what me and my doctors already know...I need an IV.

Does that make sense?

I'd like to ask that question personally one day to the CDC. I can't wait for the day that CARMA comes back and bites them you know where!!! I'm sure eventually everyone will learn that Luvdtoteeup is just a wee bit PO'D. I have just lived with the answers I was getting from Dr.'s and lived and golfed around my disease (LYME), until I became disabled. I wonder if the CDC members when they go golfing, do you think when they are looking for their (LOST) (BALLS)!!, that they think about being bit in the you know what??? One day, I'd like to see this happen like it happened to me while trying to make a living and do what I believe GOD inteneded me to be, a Professional Golfer. Now these guys over there playing GOD (The CDC) decided to jump in front of me while I was playing, and screw up my game and the life I enjoyed by filling their pockets with PROFITS and LIES and not (TEES and BALLS!!) How disgusting!!! As for the NON-REACT on my tests, I am not ever going to keep my mouth shut and NOT REACT about what happened to me and is happening to countless others out there. I keep saying I'm trying not to be bitter, but what do you call what is happening to myself and countless others over the past 13 years of HELL!! Apparently, while the CDC was making profits, which Attorney Blumenthal of New Jersey is uncovering with his most gracious efforts on behalf of us all that are suffering, sticking his neck out and not being afraid or intimidated from these you know whats, that CARMA is about to begin!!! Sorry Savvy, I had to say this tonight, I hate hearing what is happening out there to countless others. I am too stubborn to let them win. I am going down fighting for what the CDC has done to me and my family. I know where the BULLS-EYE target should be pointing, and it wasn't on my leg where I got bit. I wish you the best and sorry I am so blatently HONEST tonight. Dawn. (The Minnesota Golfer Girl) Minnesota denied me I didn't have this disease over and over again with there inaccurate testing stemming straight from the CDC. What a bag of lies and no BALLS for them to keep playing with..

Um. wow! Feel Better? Not that I'm complaining, you can vent to me anytime you need honey cause it sounds like that was piling up for quite some time!!!! I can certainly see why though. I have only been living with this a short time relatively speaking (a year although I believe a little longer) and I already feel like my life was robbed. I can't imagine how upset I would be if I knew what was wrong and they kept telling me that wasn't it! Like I said before, kudo's to you for never giving up!!!

I must say though, You're a bit scary when you're angry though.....

Remind me of myself!

I sure hope you have a better day today.

xoxoxoxoxoxoxoxox~ Savvy

I've told this story before on here -- a doctor friend of mine (who has Lyme) told me about one of her patients testing positive for Lyme and she called the CDC to ask questions. She asked if she could give another person Lyme, they said "Absolutely not, you can only get it from a tick bite". So, then she asked if it's ok to donate blood they said "Absolutely not, you cannot donate blood". She asked why if she can't give it to another person. Their response was "You just can't donate blood, you have Lyme Disease". Make any sense???

You, as usual, have made a great point. Mainstream medical is great at denying this disease, but quick to pigeon-hole anyone who has been treated for Lyme or any co-infection.

There have been tests done that prove conclusively that Bb can survive all blood banking procedures and as much as a year in cold storage. You are supposed to be Lyme free for 6 months before you can donate blood, but do you think any Red Cross sight is going to believe a patient that says, sure, I'm cured! No way!

Also, if you have ever been treated for babesia, you may NEVER, EVER donate blood. You will be rejected outright.

And Dawn has made the point that I know you and I have both mentioned in the past...it takes someone getting this disease - or having a family member with it - to finally say "uncle", and admit it actually needs extensive treatment if it's not found and treated right away.

Tom

You hear that 1 in 5 adults has Herpes. Lyme is going to be worse if they don't get this under control!

I had family friends (who were very kind to try to help me) that contacted top doctors from Stanford and the Mayo Clinic. They all wanted me to come in 'right away' because they wanted to put me through a series of tests. They said that there is no such thing as Chronic Lyme - it must be something else. I just kindly thanked them and went on my way. I would be much sicker if I had gone to an ID. It disgusts me.

My grandfather had a heart attack in the last year - the doctors just told him to get off salt and change over to margarine. Hello???? Yes, put plastic in your system.. much healthier?! I'm over these dumb doctors! If you do research on margarine, you'll see that it was originally made to fatten up turkeys - they started dying and in order to protect their investment in manufacturing the stuff, they decided to turn it yellow and market it to us as a butter substitute. Ick! Margarine's color is actually BLACK.

Sorry, Savvy - got off on a tangent from your original post. I'll blame the Lyme - haha!