Finally, Things Make Sense....A Diagnosis of Lyme Disease

Where to start....First off, I want to apologize for not keep up with this blog more. I think I started this when I was working part-time and now that I switched to full-time hours, being on the computed after a 10 hour day of using it for work, is not so appealing, lol.

Anyways, I wanted to write and let all of you know we finally have a diagnosis. I will try to sum up our journey up until this point. I promise, I will try to not make it too long, even though most of you know I am long-winded! Ha!

As most of you know, I became very sick in December of '05. I had unexplained severe allergic reactions to EVERYTHING and had horrible bone pain along with a whole load of other symptoms. We saw so many doctors including doctors at the Mayo Clinic and received really no answers as to what happened or why I became so ill. From that point on, life changed. I became extremely sensitive to chemicals, foods, perfumes/colognes etc. It has made life very limiting. I can no longer work outside of the home and have not felt good in a long time. I have to be careful who and what I come in contact with in order to keep my reactions down to a minimum. We have coasted like this for a long time. However, deep down, I refused to believe that "my allergies had just worsened" as we were told by so many doctors and that my other symptoms were just anxiety. So over the past years, I have done a lot research on my own of my symptoms and what possibly could be the cause.

In November of this past year, I was doing some research and I came across Lyme Disease. I looked at the lengthy list of symptoms and found that out of a list of 35, I had about 27. I asked Brian if we should pursue it, but knew testing would be expensive and also I did not remember being bit by a tick. I did remember not feeling well after getting back from the 2nd trip to Sonshine Christian Music Festival in MN, in fact I remember going to A LOT of doctors appointments, describing to them flu-like symptoms and getting shots of antibiotics because I had a high white count and they didn't know what it was from. After two months during that summer, my symptoms subsided and life returned to normal and I completely forgot about it.

I knew enough from what I read on this disease, that to be correctly diagnosed I needed to find a Lyme Literate Medical Doctor (LLMD) to do the testing. Chronic lyme disease is still a controversial condition, it is hard to locate them because those physicians often have to fly under the radar (I will explain more of this later). I finally did locate one in Phoenix, but put off making an appointment because I knew it would be expensive. So I kept up w/ the research but decided to not make an appointment at that time.

Late February this year, I was placed on an antibiotic for a regular infection by my primary physician. I did not react to the medication allergy-wise, but what I experienced as a result of taking it was a flare-up in all the lyme symptoms that i have had. Everything got worse. I would list all the symptoms here but it would take too long and you probably would be baffled at the craziness of all of them. It is quite a list. As a result of my reaction to the antibiotics and I myself knowing that was one of the signs as the antibiotic starts to fight the bacteria that has invaded your whole system, we made an appointment w/ the LLMD in Phoenix.

The appointment itself was a bit of a nightmare because I am so sensitive to cologne and I had an allergic reaction to what the doc was wearing (I am sure none of you are surprised, lol), however the doc was very knowledgeable, prayed w/ us (he is a christian) and for the first time he validated ALL of my symptoms. He said he could basically give me a clinical diagnosis by just listening to my list, however he wanted to have me tested to find out for sure.

Well, today we got our lab results and sure enough, I tested positive for Lyme Disease. Yay!!!!!!!!!!! Who would have thought I would have been so excited to get a diagnosis. lol It just means the world to us to finally have know why life changed so drastically 4 years ago.

Lyme Disease is a very devastating and destructive disease as the bacteria if left untreated can invade your heart, brain and nervous system. At it's worse, it can cause seizures, paralysis and permanent damage. Thankfully, in my case, it has not gone to that level. The doctor did say that the bacteria has destroyed my immune system causing me to be allergic to everything. He said my system is SO shot that it can't fight the lyme bacteria, which is why my symptoms have increased.

As far as treatment goes, this is where we really need your prayers. We have absolutely no idea which way to go. Normal protocol from LLMDs is to do long-term antibiotics, most successful being by IV. At the level of sensitivity I am at w/ drugs, this is quite dangerous. I would have a PORT or PICC line inserted as the way to infuse the drugs into my system. The recommendations that most LLMD's use is by the International Lyme and Associated Diseases Society (ILADS). The doc in Phoenix has his own protocol that is very different. It goes more on the holistic/naturalistic approach and uses only IV methods infusing minerals, a cell biofilm destroyer (not sure what that totally means) and then an infusion of antibiotics. We are not totally comfortable going the non-western medicine route yet. The doctor that we have heard that is the best in doing successful treatments world-wide is in South Carolina. He does follow the ILADS protocol and has patients who have made complete recoveries. However, that is a 30 hour drive for us, would mean managing my treatment long distance and would require us to make trips back to SC to have follow-up appointments. We can't fly yet, because I am still too sensitive/ill. So that is what we are currently faced with.

Another big factor is the cost of treatment and when to start it. If you do any research on Lyme Disease it is currently a controversial diagnosis. The documentary "Under our Skin", the video I have posted below, gives you a taste of what is going on in our society. Insurances refuse to cover the long-term treatment because of the cost. Meanwhile, thousands of Lyme Disease patients are suffering and are not able to get treatment or having to pay close to 25,000 out of their own pocket to get well. The IDSA set-up a protocol on how to treat Lyme when diagnosed, which has been repeatedly study by Lyme physicians and has shown to be very ineffective, often leaving the lyme patient seriously ill. However, politics and money have invaded this disease and therefore insurances refuse to pay for treatment. Doctors are afraid to say they treat lyme disease for fear that insurances won't cover their claims and most physicians just plain refuse to treat long-term out of fear of losing their license. So that would be another prayer request, we have absolutely no idea how we will afford the treatment. We know I need it, as I tested positive and we also know the longer we wait the more ill/damage it will do, however financially it seems impossible. We are praying about when to start treatment and might have to delay for awhile until Brian finishes school in Dec. '09. The video below is a trailer for an incredible documentary done to bring Lyme awareness to the public. Fox News is actually in the middle of doing a story on one of their talk-shows as my friend has been interviewed.



This video below shows you the cost of misdiagnosis....



This video shows what effect it has on doctors who will fight to treat this disease correctly.


Well, I think I have written enough for now. I promise to keep our blog updates coming more frequently to let you know about our journey. Thank you for all of your prayers and support! We praise the Lord that He guided and directed us to this diagnosis and know that He will continue to do so as I start treatment.

Blessings!