The End...

Well, this is the end of this blog - I don't have lyme. Not only don't I have lyme, but I never HAD it to begin with.

All those blood tests were negative. Including the IgeniX test - negative. Nothing, nada, bupkiss - no lyme disease. Soooo - sleep studies, PICC line, gluten withdrawal, etc. all unnecessary.

So to further say something - as I'm leaving this bad boy published with a link to my new blog which has yet to be created - double check your current doctors education, memberships, etc. Make sure he/she isn't focused on one disease and will find it in you even though you don't have it. Oh yeah - and make sure that you get a second opinion.

All the best,

Blymey

Sleep Studies

In a recent blog, I wrote about my experience going through this...Well, I just got a call...

"I'm sorry," said the technician (we'll call her Sandy) "but your sleep study did not meet protocol and therefore the doctor would like for you to come back and do it again." I was flabbergasted - did not meet protocol? What the f*&# does that mean?

"I'm sorry," I say. "Can you explain to me what it means by 'didn't meet protocol'?" She went on to explain that I never really hit REM and therefore there was no data so that they could not write up a report. "Oh - and you want me to come back? To do the test again?" (I'm thinking, what the hell? Wasn't it bad enough the first time I had to go through it? And they want me to come back again? I don't think so!!!)

As a result of not hitting REM (which means I did not sleep - at all!) there is no data. They cannot write a report. He'd really like to see me. Well, isn't that nice. I tell the Technician, Sandy, that there is no way in the 7 hells that I am going through that again, and that their report can note that the patient politely declined the invitation to repeat the procedure. The patient would also suggest that they use some type of sound proofing or move their laboratory to a building where they don't get screaming sirens and constant deluges of announcements for Code Blues and Code Reds. I also let the Technician know that since the doctor who requested the test is no longer part of my insurance plan, I would have to pay out of pocket, and well, I am not really wanting to do that.

I mean, really...I just said that I was tired. I had trouble sometimes getting to sleep...Well not anymore, as it is truly amazing what can happen when you start to exercise. Wears your butt right out.

So - am I going back? No way in the 7 hells am I doing that again. It wasn't fun, it sucked on all 7 levels.

Now - I'm going to go exercise which will settle my brain and make me tired, as if I needed any additional help.

Switching Doctors

So - my doctor has a blog - his link is below. LymeMD - take a look at his July 4th posting - he said that he got angry...well his ego made me angry.

Yes, he discontinued coverage with my insurance provider. He doesn't seem to understand that in treating me for lyme disease, and his focus on the disease has made me feel like a guinea pig. What if the weight loss has reduced the chronic pain in my knees? How do I know for sure that it isn't my change in diet that has allowed me to feel so completely wonderful? I have loads of energy, have started to enjoy exercise (GASP!!!) and was simply ticked off at this doctor's response to when I told him that I would need to change primary care physicians.

I cannot fill prescriptions through my insurance program if he does not take my insurance. They audit this stuff - did you know that?
I cannot have the 8 million tests that he wants to continue putting me through without a referral from a doctor that is on my plan - AND not just that - the referral has to be to another doctor who accepts my insurance.

Yes, most lyme doctors do not take insurance - if in fact my doctor failed to renew the contract with my insurance company due to the problems that he is having, should that not make the patient more leery of having this doctor treat them? Also, his focus is on lyme. What if the tests generated do not account for lyme and he just truly "believes" that I have it - what if it is something else? What if it is nothing - what if it is related to obesity? I still have about another 40 to 50 pounds to lose - how will I feel when that is gone?

I am so angry - he said "Do you know how cheap I am? Other lyme doctors charge $400 to $800 per visit - and for me, it's just $50!" It isn't about money - or not all of it. If I want to truly be treated as I believe I should be treated, why is it not a good idea to go forward and get a second opinion? His own opinion is, of course, that he's the best lyme doc around. His ego was stomped on when I told him that I had to leave. Yes, my progress is "near miraculous" but how do we know that it is lyme and not weight loss?

Again - too many questions, too few answers. Frustration and anger abound.

That's all for now...By the way, go to www.lymemd.blogspot.com and read his July 4th post entitled "Lyme Care - Is It Affordable?"

Looney Tooney

Okay - this is my dog. She's an italian greyhound. Nothing unusual about her except that she's my buddy. She sits near me, sleeps with me and gets excited when I get home...she's awesome!

She loves my husband and has finally (!!) accepted our son as a higher up in the pack organization of our family...for such a small dog, she sure does have a big attitude...by the way, the pillows she's leaning on are small throw pillows - she's all legs.

The PIC line is a pain in the butt. Nurse Ratchet was here last week (he came on Friday - late!!) and changed the bandage. My arm was really sore so I also got a lecture and a warning that if it got worse in any way I would then need to go to the ER as I may have needed to have my PIC line taken out and then reinstalled - EEEUUUWWW.

Basically, after the bandage was changed and the warning received, we determined that my arm hurt so badly because I was using it too much. Granted, I helped paint the weekend I had it installed, and continued to use it on a regular basis - sooooo - not a good thing. This week has seen much less use of the arm.

This past weekend was all about relaxation. Saturday I did nothing - I sat on my butt, read my smutty novels and watched HGTV. Sunday I took my child to see Wall-E. Very cute movie. It has a really great theme for adults - I'll not share so as to spoil anything for my readers, but nevertheless, it was just a really cute movie.

Saturday night I did my sleep study. The Doc believed that I was suffering from sleep apnea. It was a horrible experience. First, you are completely wired up - I mean on your legs, chest, scalp, face and in your NOSE! This was the most disturbing to me because I mean, where were these wires before they were in my nose? GROSS! Also - as the sleep center is located at the hospital - Shady Grove in Gaithersburg/Rockville, Maryland - everyone knows that sleep just does not happen in a hospital. Not for the usual reasons of being disturbed by a room mate, or having nurses coming in and out to take vitals - no this would be the fact that every 15 minutes there was either a Code Blue or a Code Red. Now, the hospital must make an announcement (it was a different voice every time) on a slight delay - and then it is played over and over and over again on a repetitive basis for 5 to 10 minute intervals. How do I know this? Because after the 3rd Code Blue (people dying everywhere!!!) I started to time how long the announcement was played.

The other bad thing about being in a sleep study in a hospital is that people die in hospitals. I know that I mentioned somewhere that I was a medium - this basically means that I see and can speak with dead people. Well, when you are in a hospital, and the spirit knows that someone is around who can hear them - they are drawn to you. All in all, this did not make for a restful night. There were three people who died unexpectedly that night. One was an older gentleman, he was one of the code blues - he was in the ICU for pneumonia and went into cardiac arrest. They were unable to revive him. A second person was a woman. She died on the operating table - she was brought in by helicopter (she remembered all of this) from a car accident way out and she was brought back or revived. She has a long way to go in regard to recovery, but she'll be back eventually. The third was the hardest. A child died due to complications from cancer. He was 9. The same age as my son. He was so assured that it was his time and he was ready to go - he said "I'm just so tired - and I'm ready to go into the Light." That is exactly where he went - into the Creator's arms. So much suffering from one so young. That one was really hard to deal with.

So - after not getting hardly any sleep at all - the technician comes in to wake you up at 5 a.m. She removed all the wires (leaving all the blobs of cream and stuff on my scalp to find later - can we say euuuuwwwww?) and electrodes and let me go home. I drove home to a beautiful sunrise - let myself into the house and promptly put myself back to bed.

Enough about sleep studies...

I do have a pending problem...Well - this is about my lyme disease - now I have a new challenge. Finding a doctor that has treated and is aware that chronic lyme disease does, in fact, exist. How do I know this? I have it! My insurance company and my current doctor determined that they didn't want to work together any longer, so since I'm not paying $40 more per visit than I was paying via co-pay, I've got to find another doctor. I'll see him tomorrow, get copies of all my records and move on. I've already got an appointment with a good doctor next Thursday. This is such a pain in the butt.

This weekend is the 4th of July and we have loads of plans. First, I'm taking the day off tomorrow - it's the 3rd. I've got loads of errands to run, as well as my last doctor's appointment with Dr. Jaller. His blog is linked below - lymemd. Anyways, while I've enjoyed his curiosity as well as his experiences in treating lyme, I have to admit the last two weeks I've felt quite like a guinea pig. Not a good experience for one to have.

Back to the 4th. We live in the suburbs of the Washington, D.C. Metro area. I found some interesting areas to watch the fireworks go off - so we have plans to do that. Not to mention, it may rain (it is always threatening rain on the 4th) - so instead of going to the Mall and sitting on the marble steps on the Lincoln Memorial (we have done this before - but it was pre-child), we've got another place we're going to try. I'll write more on this later - I don't want to give up my good spot.

We're also planning on taking our child to the movies to see "Kung Fu Panda". There are quite a few movies out that I'd like to see - Wanted, Hancock, Iron Man and the Hulk are just a few. Looks like a good movie summer.

Well that's all for now.

Blessed Be,

Amy