Under Our Skin Offer

Open Eye Pictures is offering a special for the month of May (2010). Purchase one DVD and get a 2nd one free. They are calling it A Doc for a Doc.

For those that don't know, Under Our Skin is a documentary exposing the hidden secrets of Lyme Disease. It is absolutely a wonderful film that I highly recommend. I have seen it in theater and in North Carolina, Carolina Lyme is hosting a screening of Under Our Skin on May 12th. Unless something happens, I plan on being there.

Under Our Skin

Under Our Skin is coming out in theaters soon. I believe in June 09. GO SEE IT!

September Lyme Posts

I wrote this a while ago. It was never completed, but it posted today anyways. Oh well. Here it not in it's entirety.

The First Post: What my blog is about!

Next I wrote several blogs on Tick Borne Illnesses. Here they are:

Tick Borne Part 1
Tick Borne Part 2
Tick Borne Part 3

I also wrote some on my diagnoses and therapy.

My diagnosis
My therapy
A day in the life of my treatment

I talked about my PICC Line in September 2008.

PICC Part 1
PICC Part 2
"Anniversary with PICC"
Problems with the PICC
PICC line story at the hospital
More on my PICC

I also had some "itching" and "rashes" in September of 2008

Itching
Why am I itching?

I saw my blood under a really cool microscope.
Bradford Microscope

I talked about my emotional roller coaster
Mood Swings


And also saw the amazing documentary:
Under Our Skin
A review of Under Our Skin

So Angry

This post is probably not going to be very coherent and very long and for that I apologize in advance.

For most Chronic Lyme Patients finding the answers to their medical condition is often years in the making. I'd say more times than not .... it takes a person saying "Oh have you ever thought you might could have Lyme Disease?" OR "I heard about this doctor that can figure out what anyone has." OR "Your symptoms sound suspiciously like mine before I was diagnosed. I have Lyme Disease." OR "I know this person that was as sick as you are now. They have Lyme." OR something similar.

I got the "Did you ever think it could be Lyme Disease? I am being treated for it and you should check it out. You have a lot of symptoms that are on the Lyme Disease check list." So then I checked it out and got in touch with the Lyme Disease Foundation that forwarded me to an appropriate Lyme Literate Medical Doctor (my particular physician also specializes in other things such as Heavy Metal Toxicity & Nutritional Deficiencies & other things so I knew he wouldn't have "Lyme Blinders" on and only assume that I had Lyme Disease).

Integrative Medical physicians are often under attack by their medical boards ... whether those medical boards are in North Carolina or other states. I know of several physicians (even those that treat other things than Lyme Disease) in North Carolina that are under investigation. In fact not so long ago, we had one physician that did treat Lyme (as well as AIDS/HIV) that moved from NC to SC because the NC medical board put so many restrictions on him that he was unable to practice the way he needed to in order to help his Lyme patients improve.

I have also gotten wind that another physician has closed practice in NC because of the same thing. This physician did not have enough financial funds to move his practice to another state and he was also a bit older than the first Lyme Doctor. This 2nd doctor may or may not be a Lyme Physician. I just know that his office recently closed because my doctor's office got some of his supplies.

Other states are having the same issues. I also found out that another physician decided to close his doors and most recently today ... I found out that a physician in Maryland was recommended by his lawyer to stop treating all his Lyme patients because FIVE cases were currently under review by the Maryland Medical Board. If they prove that he isn't treating the way that Infectious Disease Society says he should treat Lyme Disease, he could have his medical license revoked. The thing is that that particular group of people do not believe that Chronic Lyme Disease exists. They believe that Lyme is "cured" after only 60 days of antibiotics at the most.

Now I have been in treatment since February/March of 2007. That is way longer than 60 days ... I can not imagine how sick I would be had my antibiotic regimen been cut off at 60 days. No doubt in my mind, I would be in a wheelchair or a coffin by now had my LLMD decided that May of 07 that I was "cured."

It scares me to think that my doctor is under the radar of the North Carolina Medical Board. I know he's been under suspicion before for not treating the "standard of care" for other things. Because of that, I have to sign a paper everytime I go in saying that I want treatment. I know my physician doesn't do the things by IDSA's "standard of care." That is MY CHOICE! I do not want the "standard of care." That "Standard of Care" got me no where for 12 years. And now that "Standard of Care" is going to cause a man who spends more time caring about his patients more than probably his own family ... to jeopardize his medical license.

This angers me more than I can even coherently write!!!

What can you do?

1. If you're in North Carolina: Go to this website and join the fight for our North Carolina Integrative Medical Physicians.

2. If you're a Lyme patient or know about a Lyme patient, go to this physician's blog. Support him by writing letters and calling! Who knows some of you might even be seeing this LLMD yourself ... or have considered seeing him ... His practice is in danger! His patients are in danger. Please help him!

3. Another for NCer's ... Go to this website and email them if you have an ELISA and Western Blot test that is CDC positive after January 1st of 2008. Just recently, North Carolina has declared that if TWO people in a county have these two tests as CDC positive ... they will declare it an endemic area for Lyme Disease. Please please please ... email them with your stories from North Carolina so they can determine whether you would help meet this criterion. In order to improve the quality of life for those with Lyme Disease it is vital that we get as many counties in North Carolina deemed "endemic" as possible. Only then will the IDSA realize that there is Chronic Lyme Disease!!!!!

Thank you for your time and hopefully I made myself as coherent as possible. This message and this blog would NOT have been possible had I received "standard of care" treatment in North Carolina.

Mandy from Under Our Skin would not be ALIVE if it had been for "standard of care" treatment. Please I beg of you ... don't let my friends die because of idiotic infectious disease doctors and medical board drama. Don't let our doctors go under because of lack of knowledge by the medical board & infectious disease doctors. Scroll back up if you have to and see how you can help.

Amy Tan

Amy Tan is an author. Her latest book that I know about is called Saving a Fish from Drowning. It was published in 2006. I have not read any of her bodies of works, but I do know something special about Amy Tan. Amy Tan has been battling Lyme Disease since 1999. I'm not sure about her health status now, but here is her website where she talks about Lyme Disease. Here she is reading some of her book.

Amy Tan also was in Under Our Skin and talked about Lyme Disease at the Tribecca Film Festival where Under Our Skin was first shown. They refer to her here as "former Lyme patient." So I am assuming she is doing well at this time. However like others who "do well" ... a relapse could always happen.

Leslie Remembered

Leslie should NOT have had to die from Lyme Disease.

It makes me angry, scared and sad all at the same time. :(

Will I die from it?

Radio Interview LD

I found these videos today on You Tube. It's an interview on a radio station in Washington DC on KJFK with Andy Abrahams Wilson of Under Our Skin from June 17, 2008.

Very interesting videos and very well spoken by the radio folks and Mr. Abrahams Wilson


Part 1 lasts about 9 to 10 minutes (What are the Symptoms plus other answers by Andy)


Part 2 lasts about 9 to 10 minutes (What are the testing Issues and other answers by Andy)


Part 3 lasts about 9 minutes (Questions from Callers and answers by Andy)

Under Our Skin

I have been working on this since I got back Sunday night. Hopefully it is all coherent. If not, blame the pain meds and the sprained wrist.

I am going to tell you about the whole experience for Sunday which begins on Saturday. :) I got up and tried to take a shower. I think I've mentioned before that showering with a picc line is quite the process, but we discovered on Saturday morning that the picc line cover would not go over my swollen hand (the one that I fell on the other day) so I wouldn't be able to take a shower. Because my previous picc line cover had ripped, I had not been able to wash my hair (nasty I know) so I decided to make a last minute stop at my hair salon to see if by chance they could wash it. I couldn't (after all) go to this movie showing with nasty hair, a splinted wrist, a picc line and everything else that was going on. I needed nice clean hair. :)

So I drove over there and explained my scenario. They were extremely nice and not only washed my hair (2 TIMES), they trimmed it and styled it so that it would be easy to fix on Sunday morning. This really means that they took the straight iron to it and flattened the mess out of it. :) I left there pleased as punch. Skip ahead to Sunday ... I wake up and get all my clothes ready. After all, there has to be a plan for what I will wear. I am a woman after all. I gather my favorite brown capris, a sleeveless orange shirt and a light green jacket. I pull out my light green frog necklace and find my favorite shoes. It's perfect. I go ahead and get ready way ahead of time. Then IT happens.

I realize I might have something in my eye. I go look. As if I had enough to deal with already, my left eye lid had swollen ... it was bad. I immediately go ahead and take benedryl to knock out whatever was going on. It was obvious to me that it was an allergic reaction to something because the swelling was getting bigger and bigger. It started feeling better, but then I got the overwhelming feeling of exhaustion. Great ... that's the last thing I needed because this thing wasn't going to be over until 8:30 and it was only 1. I go ahead and take a preemptive nap and wake up 5 minutes before we have to leave.

We arrive and have been told it's going to start later than planned and that I was put in the wrong theater. Instead of getting upset right away, I just asked to be switched to the correct theater. As we're waiting, I realize that everyone I know is in the other theater (my original theater). So I begin to panic that I might be in the wrong theater after all. I was concerned because my doctor was supposed to be speaking in one of them and I wanted to hear what he had to say. After all, that was one of the reasons I was there. It took forever for us to be seated because NBC 17 was in the theater interviewing the director of Under Our Skin (Andy Abrahams Wilson). Finally they let us sit.

I was frustrated at this point because I wasn't sure if I was in the right place and I wasn't going to be able to eat anything. They were serving BBQ and I do not eat BBQ. I decided to again ask about if I was in the right one and then I decided to find and ask my doctor himself. I found him and he said that he indeed would be speaking in that theater. (What drama for one little question)

The best part up until this part was that I had met an online Lyme friend of mine Melisa L. We did not get to chat long, but it was nice really talking face to face to someone I had been talking to online for a while. Shortly after my husband eats, my doctor comes in and begins his speech about the Carolinians for Health Care Access. This is a very important group that has been established for a while, but has been reactivated. We want to try to change legislation to protect Integrative Medical Doctors. He then introduced a lady that is apart of the group that was from the Lyme community and then a gentleman from the Autism community. After this, my wonderful Lyme doctor came and sat with my husband and I to watch the movie. This absolutely made my night. There were tons of Very Important People in that room (other Lyme doctors and others) and he chose to sit with us.

After this, our North Carolina Lyme Disease Foundation Founder and President spoke and the movie began. This movie was everything I hoped for and more. It was full of emotional stories of Lyme patients, full of Lyme Literate Doctors, full of symptoms of Lyme, and it was just full of information on Lyme Disease. It was nice to watch this documentary on the big screen in a room full of people who understand the journey that I have taken. Unfortunately unless you or someone you love has been through this journey, you can not even begin to understand. However, the documentary will impact those who do not understand.

At the end of the documentary, the director had a question and answer session. The question that I asked was how long until this was on television for the masses. He stated that they did not have a television deal yet, but that it was planned for release in the theaters in March. He urged everyone to come again and to spread the word that the it was going to be out. He said the more people are interested in the theaters ... the more likely they would be able to get it out on TV.