Dear Friends,
If you've been reading this blog for some time, you know my sweet Emily, age 15 1/2 was struck with fibromyalgia beginning about a year and a half ago. There are two schools of thought with fibro. The first is that it is its own disease. The second is that fibro is a symptom of something else going on in the body. I choose to believe the second because I want to believe we can "fix" her.
We have been to so many doctors and specialists. The pediatric rheumatology/fibromyalgia specialist that she sees has tried everything in his bag of tricks. I've tried everything that has been sent or told to me. Nothing has worked and all lab results, exams, and testing have come back normal. Until now...
We had been referred to a medical office that does more alternative therapies of medicine. We first went a couple of months ago. Emily first saw a nurse practitioner who spent about an hour and a half going over EVERYTHING regarding Emily's fibro history. She ordered some blood tests. I thought to myself, Emily has been tested for everything under the sun already. The nurse practitioner said I had to go to a specific lab because this is the only lab in the city/state to run some of these specific tests. While I wait the 6 weeks for the tests, Emily has been back to this clinic for massage, healing touch, she's started yoga, and will soon begin acupuncture.
This morning was our follow-up visit after 6 weeks. Would you believe there were some lab abnormalities? I was shocked. She, the nurse practitioner, spent an hour with us again today and there were three significant findings. The first thing she said is that Emily has Hashimoto's disease. This is a disease of the thyroid, the antibodies that the thyroid produces, that is not treatable, but is pain causing. (Emily's thyroid is functioning properly, just not the antibodies it is producing) I also question if the other two issues get resolved that possibly the Hashimotos will resolve itself??? Maybe??
Another abnormality that was VERY low was a specialized Vitamin D test. Not your standard test and Emily has started today on some medication to bring that up. Low test results here cause pain.
The third abnormality is something that could be carried by ticks. Not Lyme disease, but related. It has something to do with her lymph system and according to the nurse, there is only one doctor who treats for this specific issue in the United States and that doctor is in Kansas City. Again, this was a specialized test and Emily's results were VERY low. She thinks these three things are all interrelated and all causing her pain. She also thinks it will take a year once treatment begins for Emily to start feeling better. Back to the tick thing. Emily had been bitten by a tick. (I don't remember the nurse asking us about ticks at the first visit and I didn't even think of it at the time.) She was bitten back when we lived in Florida. The nurse practitioner thinks that it is possible that Emily has carried something in her body that has remained dormant. Then when she got very sick 1 1/2 year ago, high fever and so forth at the time all this fibromyalgia started, what was dormant in her body became active starting her pain.
So what happens next...Emily is now on super high doses of Vitamin D that we've started today. The nurse practitioner asked her to start the Paleo diet, Emily calls it a cave man diet. I got the book and we are starting it tomorrow. Tonight I research this doctor in Kansas City and begin the process there. Emily continues with yoga, massage, healing touch and accupuncture. Whew....
I have been elated today to hear news that I'm hoping and praying will take us in the right direction with her. I've been watching the television show "Mystery Diagnosis" faithfully to see if any of their cases are similar to Emily's. There was a case of Hashimotos on the show. I remember thinking, well Emily doesn't have anything wrong with her thyroid as it is functioning properly so I didn't pay much attention to that episode. I'll have to go back and watch it now. The final thing is that the nurse practitioner wants Emily to have some counseling. Emily is such a sweet and loving girl, but as you can imagine, being in pain every day takes a toll on her both physically and mentally. Sometimes it is hard mentally for her mommy here to know that my child is in pain, but we take it day by day.
So with all this said, please Please keep Emily in your prayers that we are doing the right things and finally getting her the help that she needs to remove this pain from her body. Also please pray that she has the strength to deal with the pain until we get it resolved.
With love and blessings,
Nancy
(Update) Upon further research regarding Emily's lab tests, it appears that she has Chronic Lyme Disease. So much was given to me earlier that it is all hard to digest. The more I read, the more I find people first being diagnosed with fibromyalgia for years only to discover that they have had chronic lyme disease. Could it be that this has been her problem all along? Now, what about the Viatmin D and Hashimotos?
Your sweet Emily will be in my prayers as you see what works best for her:)
ReplyDeleteOh Nancy I can't believe all this has happened. You all go on my prayer list right now. It takes a lot of strength for a mom to help a child with a chronic problem. It will help to know the Dx for sure. One can learn to live with anything without going bananas except pain.
ReplyDeleteBlessings
QMM
Oh my goodness...she has been through so much, but maybe now there's a light at the end of the tunnel for her! Who would have thought? Maybe the Lyme disease is messing with her thyroid and vitamin D levels? Hugs for you both, and hang in there!
ReplyDeletemust be very careful about the overuse of painkillers and can lead to an addiction, and side effects that complicate the nervous system.
ReplyDeletelilly Abbott
Findrxonline
I have also been diagnosed with Hashimoto disease and Vitamin D deficient. I do try to go in for my routine blood tests for monitor. I really don't notice any pain but notice clarity with day to day things. I hope your daughter finds the answer to what is causing her issues.
ReplyDeleteYour Emily will go into our prayers, I hope you find the answers you need to help her.
ReplyDeleteOh my gosh, this sounds just like me! I've had fibro for almost 6 years, and only after suddenly getting a fever/"flu"-like illness. I've had every test under the sun, but NOT those...could you possibly do me a HUGE favor and email me the names of those tests, pretty please? I have to go to my doctor for my yearly physical soon and it would be nice to have something to ask for that hasn't been tested for. I have also been told to get a test for Raynaud's syndrome, but I don't know how they do that... my email is meglittlestudio (at) gmail (dot) com
ReplyDeleteThank you so much, I pray your daughter gets better (and me too!)
Forward movement - finally!!!!!
ReplyDeleteNancy -
ReplyDeleteI am very happy to hear you have a diagnosis. Waiting for one can me the most distressing. Thanks for sharing and I am praying for your girl.
CJ
Nancy,
ReplyDeleteI haven't wanted to intrude or make suggestions on your daughter's health until you had been to the doctors and gotten back the results with the diagnosis. But now sounds like it might be the time.
My husband had his second bout with melanoma skin cancer last year in July of 2010, with the first being in 2005. Both times he had extensive surgery to remove the large tumors, but declined any chemo or radiation treatments, preferring to go the natural route.
After the second surgery, I discovered a TV program on the Angel Network called, Know the Cause with Doug Kaufmann. His program has been on the air, both TV and radio and now on the Internet too, for over 10 years.
His whole premise is that fungus and yeast are at the bottom of almost ALL disease. And that if you remove the fungus, yeast and mold from the foods you ingest and the air you breathe, you will recover and live a healthy life.
I quickly bought all his books and did my own research too, but this guy's ideas are really working! Both my husband and I have gone on his Phase I and Phase II lifetime eating program, which is devoid of nearly all grains, potatoes, corn, sugar, most dairy and reduced salt intake.
You are recommended to eat only organic produce and grass-fed and free-range meats and no farm raised fish and eliminate ALL processed foods. He also encourages good quality vitamin and mineral supplementation and pre and probiotics.
Although I'm certainly not a doctor, I would recommend your daughter takes at least 5,000 units of Vitamin D3 a day. That's what I do and I've just had mine checked and it's at a really good level, can't remember the number now. Vitamin D3 is the new Vitamin C, you know!
I have lost over 20 pounds just since last year and never have felt better, and hubby has lost about the same. Neither of us have had any colds, where we used to get several a year, and my allergies and asthma are totally gone and my blood pressure is now down lower than 120/80 most days. I was up in the 150/95 range and taking blood pressure pills not long ago.
Please, please, please go to Doug Kaufmann's website, http://www.KnowTheCause.com and watch his TV program if you can get it. I have DishNetwork and it comes on the Angel Network, channel 262 here in Minnesota. He's also on Facebook and sends out a monthly email newsletter.
Blessings to you and your family Nancy, hope that removing all fungus, yeast and molds from Emily might just be the solution to all her health problems!
The Wicker Woman®--Cathryn Peters
http://www.WickerWoman.com/blog
Nancy,
ReplyDeleteI haven't wanted to intrude or make suggestions on your daughter's health until you had been to the doctors and gotten back the results with the diagnosis. But now sounds like it might be the time.
My husband had his second bout with melanoma skin cancer last year in July of 2010, with the first being in 2005. Both times he had extensive surgery to remove the large tumors, but declined any chemo or radiation treatments, preferring to go the natural route.
After the second surgery, I discovered a TV program on the Angel Network called, Know the Cause http://www.KnowTheCause.com with Doug Kaufmann. His program has been on the air, both TV and radio and now on the Internet too, for over 10 years.
His whole premise is that fungus and yeast are at the bottom of almost ALL disease. And that if you remove the fungus, yeast and mold from the foods you ingest and the air you breathe, you will recover and live a healthy life.
I quickly bought all his books and did my own research too, but this guy's ideas are really working! Both my husband and I have gone on his Phase I and Phase II lifetime eating program, which is devoid of nearly all grains, potatoes, corn, sugar, most dairy and reduced salt intake.
You are recommended to eat only organic produce and grass-fed and free-range meats and no farm raised fish and eliminate ALL processed foods. He also encourages good quality vitamin and mineral supplementation and pre and probiotics.
I have lost over 20 pounds just since last year and never have felt better, and hubby has lost about the same. Neither of us have had any colds, where we used to get several a year, and my allergies and asthma are totally gone and my blood pressure is now down lower than 120/80 most days.
Please, please, please go to Doug Kaufmann's website, http://www.KnowTheCause.com and watch his TV program if you can get it. I have DishNetwork and it comes on the Angel Network, channel 262 here in Minnesota. He's also on Facebook and sends out a monthly email newsletter.
Blessings to you and your family Nancy, hope that removing all fungus, yeast and molds from Emily might just be the solution to all her health problems!
The Wicker Woman®--Cathryn Peters
http://www.WickerWoman.com/blog
Nancy,
ReplyDeleteMy husband had his second bout with melanoma skin cancer last year in July of 2010, with the first being in 2005. Both times he had extensive surgery to remove the large tumors, but declined all chemo or radiation treatments.
After the second surgery, I discovered a TV program on the Angel Network called, Know the Cause http://www.KnowTheCause.com with Doug Kaufmann.
His whole premise is that fungus and yeast are at the bottom of almost ALL disease. And that if you remove the fungus, yeast and mold from the foods you ingest and the air you breathe, you will recover and live a healthy life.
I have lost over 20 pounds just since last year and never have felt better, and hubby has lost about the same. Neither of us have had any colds, where we used to get several a year, and my allergies and asthma are totally gone, blood pressure is now down lower than 120/80 most days.
Please, please, please go to Doug Kaufmann's website, http://www.KnowTheCause.com and watch his TV program channel 262 Angel Network on DishNetwork. He's also on Facebook and sends out a monthly email newsletter.
Blessings to you and your family Nancy, hope that removing all fungus, yeast and molds from Emily might just be the solution to all her health problems!
The Wicker Woman®--Cathryn Peters
http://www.WickerWoman.com/blog