Wednesday, July 23, 2008

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,


Monday, July 7, 2008

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 and read his July 4th post entitled "Lyme Care - Is It Affordable?"

Wednesday, July 2, 2008

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 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,


Sunday, June 22, 2008

Installation of a PICC Line

Well, today is Sunday, June 22nd 2008. On Friday, the 20th, I had a PIC line installed in my right arm - a PIC line stands for (I think) a personal intravenous catheter - it's the "P" part I'm not sure about. Anyways, it wasn't too bad, it just took f - o - r - e -v - e - r! I got there at 8:30ish in the a.m. and was expecting to get the line installed around 9ish...Welllll - that is so not what happened.

I show up at the outpatient center of the Shady Grove Adventist Hospital (ahem! On time) and am really a little surprised that where I am is basically where folks go to get their chemotherapy. This was a little shocking. I mean, I know people who have had cancer (and survived) but I've never really realized the process. There was a woman there (I didn't ask what her cancer was - I mean, I am not exactly trained on the protocols and stuff in regard to when people have cancer - I thought it might be kind of rude - "Hey! So, what ya got? Breast cancer? non-hodgkin's lymphoma? - I mean, it just sounded kind of rude in my head so I didn't say anything) working on her computer and she was wanting to get out before noon because she had an afternoon meeting. I thought that her attitude was right on. Everyone knew that I was there because of my lyme's because Marsha, the nurse, kind of announced it by saying "Oh - you're one of Dr. J's patients! We call him the 'King of Lyme' because he sends us one of y'all at least once a week." Well - now that everyone knows that I have lyme disease, everyone starts asking me about what my symptoms were, etc...Meanwhile, I'm just sitting there and Cheryl, the other nurse is trying really hard to get in touch with IVTreatment to get my PIC line installed.

Around 11 a.m. (keep in mind, I've been here since 8:30 a.m.) they take me back to IV treatment for my PIC line installation. I am really happy that I brought my latest novel with me. I love to read - the smuttier or more paranormal the better. The book I was reading on Friday was by J.R. Ward "Lover Enshrined". This series is AWESOME! Anyways, I wasn't too upset by having to sit in a recliner, with a pillow and an afghan and read my new book. So, anyways, at 11 a.m. I go back. I meet the nurse who will install my line and it takes all of 30 minutes. The cool thing about a PIC line is that it goes from the inside of whatever arm you choose (we chose my right, despite being right handed, I tend to do more lifting with my left - purse, tote bag, etc. so right side it was) - around the bicep area and the catheter goes through the big vein all the way to the superior vena cava (a big vein right near the heart)...tool cool for school. Anyways, after a shot of lidocaine, and a small incision, it went right in. I got to wear a mask on my face and a cute little paper hat (the fashion was truly rockin' let me tell you) and I didn't even have to watch...despite the factor that there was a mirror RIGHT THERE!

So, by 11:30 I was back in the outpatient center and being hooked up to my first dose of IV Rocephin. The purpose of getting a PIC line and starting on Rocephin is due to the fact that my short term memory is going "buh bye!" So, the Rocephin went in, I ate hospital food for lunch (I had the vegetable soup - it sucked - beef stew with brown rice - Not Too Shabby - and an apple - I brought it home with me - I was stuffed), I read another chapter of my book and then 30 minutes later, I was done. I called my happy hubby where he was at work, and he came and picked me up and brought me home. However, I didn't get home until almost 2:30...It seems to me that I don't recall why this is...OH YEAH! I didn't finish the IV until almost 1 p.m. and happy hubby picked me up at 1:30. With traffic, it took some time and so I went home, called work told them I wasn't going to be in due to the time (by this time it was after 3 p.m.) and took a nap.

Naps - well, I don't succeed too often anymore with naps. I've read that sometimes people with Lyme Disease have trouble sleeping - you're exhausted and all you want to do is sleep, but once you lay down your eye balls pop open and your brain starts spinning and well, sleep doesn't happen. This is what happened Friday afternoon.

So, I got up and plopped my rear end on the sofa and finished my novel. This is not an unusual occurrence for me. I usually read close to two to three novels in a weekend and still manage to participate in family activities, house work, etc. I am easily capable of reading 400 pages in about 3 hours. Don't ask me how this is possible, but it is - I kind of lose myself in books.

Hubby picked up the child (who is 8 going on 40) from summer day camp and he went upstairs and took a nap - hubby gets migraines...I do too - but mine have stemmed from what we ultimately think is the Lyme. What hasn't stemmed from the lyme???

So around 9 p.m. hubby and child went to a softball game and I found another novel to start.

The PIC line is fine. Sleep finally happened with a little help from Tylenol PM - the usual assistance provider.

Saturday a.m. got up EARLY (7:30 a.m.) to do house repairs...The HOA for which I am the President has an ACC Chairman (the hubby - always recruit family members so that they can share in your pain :) ) who did home inspections - OK, WE did the home inspections - the ACC will do the rechecks...Anyways, we had violations as well, and we had to fix 'em. Also, our nurse was coming todaythat morning to show us how to infuse the IV antibiotic. He showed up late (he got up late) and despite our conversation on Friday (he sounded like a fun person) he was NOT a fun person. He may be all cheerful, etc. until you want to ask questions and do something entirely different than what he wants you to do. He was NOT a person that I want to be in my everyday circle of friends...Anyway, he came, he taught, he was NOT friendly or really, all that helpful - we figured it out, and I got my second dose of Rocephin. From here on out - we'll call him Nurse Ratchet :)

Then...after Nurse Ratchet left, Hubby and I had to complete home repiars - including painting the stairwell going up to our front door - We have black wrought iron stair railing that was, to be blunt, rusting and needed some help. Hubby prepped and scraped and then I painted. It looks GREAT...although it was hotter than hell by the time Nurse Ratchet left.
Nurse Ratchet has control freak issues - hope he doesn't find and read my blog (!!)

So hubby finished fixing Garage trim (caulking, preparation and painting) and we got some of the stair railing done before it got too hot...But too much heat makes me feel like serious poop so I went inside, wrapped the PIC line in saran wrap and took a shower. THEN a nap was in serious need, so our dog Luna and I slept for about two hours.

Then after napping, dinner was cooked for hubby and myself and child and we went to Brewster's for ice cream. Now, due to the Lyme, I cannot have dairy (this sucks in a serious way and is a story for another time)...however, they have HOMEMADE ice cream, ITALIAN ICES with NO DAIRY and are so incredibly awesome. I got the Grape. Hubby got something called a Home Run (which he says is now his most favorite thing EVER!) and child got a double scoop of chocolate and mint chocolate chip (I got a mint chocolate chip kiss from child). However, my Grape WAS AWESOME! I have a thing for sweets - not chocolate like most females, oh no, I like junk candy - Skittles, StarBurst, Sweet Tarts, Now & Laters, Nerds - you get my point. The grape italian ice was like a GRAPE JOLLY RANCHER!!! Can we say (all together now) YUMMMMMMMYYYYYY.

OK - then we drove home (and child did not wear ice cream home - a first!) put child to bed, and then it was time to watch the MMA - It was the finale for UFC Ultimate Fighter. It was an excellent fight - all of 'em, although I was a little disappointed with one of them as it was more standup than down on the ground. I can't recall which fight it was, but it was OK. The finale fight was excellent as the guy whose been rather funny all season and pretty humble and unassuming won the event. Hubby was pleased, and opponent was not - said he didn't tap out, but dude? You tapped...there on camera.

Finale was Evan Tanner against another dude - Tanner is older and has pretty much been through hell and back. He lost the fight, but he took some serious hits and stayed standing. Awesome fight! I love MMA - I wind up squeezing myself as far back into the sofa as is possible and I have a tendency to fidget during the fight, but it's awesome. Basically, I think I put myself in their positions and try to back away from feeling the fists, elbows, knees, etc. from hitting me.

Went to bed and didn't get to sleep in again! Hubby is a mean, mean man...Got up at 8 a.m. to finish painting iron stairrail. It's done - but I wound up wearing most of the enamel paint...I think that I may be the messiest painter ever...I get it all over myself, despite the fact that I'm NOT a novice painter. I think it's the artist in me...Just gotta be loose, ya know? So, after we finished painting the railing, we met some new neighbors, hooked up our boys to hang together, and then hubby and I finished the inspections throughout the neighborhood...OK - he finished them, I accompanied him on some, but not all. It was just too hot.

So - hubby did the IV treatment tonight...He wouldn't even let me help! MEAN, I tell you. I think he enjoys being "Large and In Charge". Not only that, I think it helps him with remember what it was he went through when he had guillian barre syndrome - another story for another time.

So - that was my day today, other than the fact that I did find myself some time to do some grocery shopping as well as getting a mani/pedi as well as removing the facial hair from the upper lip and brow...the things we do to maintain our looks - humpf!

Until later!


Thursday, June 19, 2008


My name is "Blymey" but I'm also known by other names - mostly in regard to my religious practice which is Wiccan. I am also a member of the Washington and Baltimore Area Pagan Clergy network - I do spell work, counseling, handfasting (marriage), deaths, births and readings (tarot, palm, aural, mediumship). You can find me through that website as Morgana Terpsicore or as Morgana Dark Witch on

I have been a "medium" all my life (yes, I see dead people) - but that is not what this blog is about...It is about the challenges of misdiagnosis over 20 years and my doctor who diagnosed me with Lyme Disease in April of 2008.

I started dancing when I was 5 after seeing the Nutcracker with a friend and my family. I continued on learning, dancing and finally going semi-professional dancer starting at the age of 15. I quit school (OK - I flunked out), moved to Orlando and slowly made my way into the "Entertainment" division of Disney accomplishing my dream of being a professional dancer. This all ended in a fall when I was 21 where I shattered both knee caps, damaged both ACLs and had, as a result, quite a few arthroscopic surgeries on both knees. My doctors advised me to quit dancing and I followed their orders - moved back home to my parents (they had to pay off all of my credit cards!!), met my future and current hubby, moved in with him, went back to school - he graduated, we got married and moved to the Washington, DC area. Whew! We've been here since 1993...

So all the aches and pains, knees, ankles, feet, lower back, neck, etc. I had attributed to being a dancer and post-no dancing - gaining great quantities of weight. Most doctors said I would be much better once I lost the weight. Yet, things kept happening...diagnosed with PMDD (pre-menstrual issues - you've seen the commercials), then Chronic Fatigue Syndrome, then Poly-Cystic Ovarian Disease/Syndrome, hormonal issues, thyroid problems, constant bladder and kidney infections - it was literally one thing after another until this past April when I met a Dr. in my current home-town and he requested that I get a physical...

Now the first thing I noticed about Dr. J is that when I had my physical he actually asked me to get undressed and wear one of those lovely paper robe things. I hate those, don't you? So undignified - especially when you're fat - as I am slowly working towards not being...Next, he actually touched me in a doctor patient way (You guys are SICK!). Now, of course he's testing me for neural issues and other problems and I'm thinking - "My Gawd - I didn't shave my legs and BOY are they hairy!"...I asked him to forgive me for not taking care of that and he said he didn't care...But as for the physical itself, I haven't been physically examined by anyone since I left my pediatrician at the age of 22 when he retired! And I'll tell you that I am now 39 although when my physical occurred, I was still 38 with a week to go until I turned my current age.

So, this physical goes on, he's asking questions (lots of questions) and I'm mentioning every ache and pain that I've ever had, all of the diseases as a child, the balance problems that I put off as clumsyness, the short-term memory issues that I was recently experiencing as just having "other things on my mind", etc. and I realize how I'm rambling on and on and say, "Well, now you're surely going to think I am a hypochondriac, just as my last doctor did." He looked directly at me - blinked and said "I don't think you're a hypochondriac - I actually think that there is a physical reason for all of these problems and I want to run a few tests." Well the tests ended up being 15 (!!!) vials of blood that supported the symptomology of lyme disease or the bacterial infection from Borreliosis Bergdorferi.

Well - he then requested that I get tested by a lab called IGenIX that specializes in testing for this bacteria - it came back as positive for Lyme and referenced the fact that it was widespread and that I'd had it for a very long time.

So, after two months of antibiotics, tomorrow I get installed in my body a PIC line (or a catheter) to make available an intravenous (IV) antibiotic. I am VERY nervous and broke down in tears when I was speaking to my hubby on my cell phone after the doctor told me that even in the month since he had seen me last he could tell that my neuropathy was getting worse as well as my cognitive function...How scary is that???

So - to explain cognitive function and what Lyme can do to you - you know your short term memory? Well, mine is not all there. For example, last week we traveled to Texas to visit my parents - we flew into Houston Hobby and rented a car. By Monday I could not recall driving from the airport rental office to my parents home in another destination. How scary is that? Pretty damn scary! There are conversations I don't recall having, questions I'll ask over and over driving people nutso (you know when you're child is 2 and asks "Why?" about everything? Try being an adult and getting that response and you have no idea you've already asked that question about 5 times prior, gotten answers, and it was about 45 minutes ago...)

So the doctor did some reflex checks and other stuff and spoke with me about my symptomology and determined that since we now have a full and complete AFFIRMATIVE for Lyme Disease we're going to treat aggressively...Cognitive issues first. That's fine, but it still scares the crap out of me...I don't like needles, and I'm trying to lose weight and well - other than having a catheter in my arm or wherever this is going - is really going to be a major pain in the ass!

So - I'll let you know what happens tomorrow...Friday, June 20th - the first day of Summer also known as the Summer Solstice.

Until then...