Phone conference with Lyme doctor and Make A Wish
Last night, my mom talked to my Lyme doctor in Nevada for quite a while. We hadn't talked to him for a while, so there was a lot to discuss. He didn't know about my hospitalization and surgery last month. He was very shocked when my mom told him about everything, but so relieved that it's taken care of. As soon as he knew what happened, he immediately asked what my doctor (gynecologist) is going to do to prevent it. He said that he would put me on Lupron, which is EXACTLY what the gynecologist wants to put me on. He was very impressed with everything the gynecologist has done. So, I have an appointment with the gynecologist in a couple of weeks to start the injections.
He said that one of the first things that they all learn in medical school is to never rely on just test results. Sadly, most doctors forgot that. Thankfully, my Lyme doctor and gynecologist have not forgotten that! My gynecologist had a feeling that something was seriously wrong with me, even though the CT scan and blood work were normal. He went with his instinct and he was so right! My Lyme doctor was very impressed, since most doctors wouldn't do that. He was also impressed that the gynecologist wanted us to talk to HIM before putting me on any medicine.
After my gallbladder surgery, I had some kind of viral colon infection. My Lyme doctor thinks that that could have contributed to all of the problems I had. He said that in women, colon infections can cause ovarian cysts and other problems. He also said the Lyme contributed also. Did you know most of your immune system is in your gut? He said that healthy people with good immune systems would be able to have fought off the colon infection and it wouldn't have caused problems. This shows him that my immune system is very weak. The gallbladder problems and cysts, appendicitis, and endometriosis could have been there for several months without showing any signs, compromising my immune system even more. Because of this, I really need to go to Nevada to strengthen my immune system. As soon as I'm fully recovered from surgery, I have to start back on the butt shot (aka most painful shot that exists. Grown men pass out from it.) to help my immune system fight any viruses and bacteria that I have.
He also said that I qualify for Make A Wish, so he is starting the whole referral process!
This is a quick description of what Make A Wish is from their website.
"The purpose of the Make-A-Wish Foundation is to grant the wishes of children ages 2 ½ to 18 years old who have been diagnosed with a life-threatening medical condition (i.e. a progressive, degenerative or malignant medical condition that has placed the child’s life in jeopardy)."
Here is their website. They are such a great foundation that brings joy to so many kids lives!!!
http://www.wish.org/about
I didn't walk today or do any exercises because I have a migraine that's making my body and throat ache too. I didn't sleep very well so I could tell that I was getting a migraine. It's better this afternoon since I took some medicine, but I'm just very tired and worn out. I need to rest up because Winterfest is in 2 days! I'm so excited!!!!
Any ideas what your wish would be? You deserve something AWESOME.
ReplyDeleteHi Victoria:
ReplyDeleteYou are an amazing and very brave young woman to have overcome so many health problems while maintaining your positive attitude.
First off, you are not the only person with endometriosis and Lyme disease. I believe that I was bit by a tick in 1969 at around age 11 while in the Ozarks. That began my downward spiral into chronic illness. My youngest sister has had many surgeries for endometriosis. I have had 6 surgeries to have my endometriosis removed. My oldest brother has Lyme too.
Before 6 spine fractures in 2008 took me down, I had been working with others to try to organize some support groups here in Illinois. I can name at least 25 or 35 women who have had Lyme disease & co-infections AND endometriosis. There is a connection but so far doctors are so busy denying that chronic lyme exists that they can't be bothered to study it.
So far, we know that women with endometriosis have low natural killer cell counts. These cells are responsible for cleaning up any kind of endometriosis implants. Almost all women have endometriosis due to retrograde menstruation but typically the immune system cleans up these implants.
Before you decide to get that first Lupron shot, please realize that Lupron will throw your body into a state of menopause. This means that you will have no menstrual cycle and you will have hot flashes and night sweats too. Lupron is not an easy option since many gain lots of weight. Please check into the side effects.
I would suggest that you contact the Endometriosis Association to obtain more information at: http://www.endometriosisassn.org/
Were you on IV Rocephin by any chance? Gall bladder problems are very common with this medication for the treatment of Lyme. I would urge your family to consider another Lyme doc if your current doctor did not explain these risks. My former Lyme doc is in Colombia, MO and does not use this medication for this reason.
Best of luck to you! Wish for something great from Make a Wish. Linda Sauer, Dwight, IL
Bless you my sister in Christ. How amazingly inspirational your story is. My prayers are with you.
ReplyDelete