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Fighting for Forrest

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Lyme disease and our battle against time. 

     As I write this I find it very hard to begin. I have no clue when it really all started, our doctor believes Forrest was bitten over 30 years ago.  I suppose I should first explain, for those of you who don’t know what Lyme disease is, exactly what we are dealing with.  Lyme disease is contracted through a tick bite.  When you are bitten the tick transmits live bacteria into your blood.  Under normal circumstances, and if you are properly treated at the time, the bacteria is killed with antibiotics. The only problem with that is that the treatment is deemed not necessary unless a bull’s eye mark appears with the bite.  At the time he could have been bitten, doctors, didn’t know that the mark only appears on a small percentage of people (scary isn’t it), and that if your immune system is strong enough, it can hide dormant in your cells for years until something compromises your immune system.  Well about five years ago we were hit with THAT storm.  This is when the tremors started. He kept telling doctors about it but to no avail. I guess I should tell you also that Lyme disease is the “great deceiver” of doctors.  It shows all the symptoms of many diseases but cannot be confirmed. The tremors were actually from the nerves in his body misfiring (my terminology) and he was beginning to have cramps in his legs and arms. The nerves were actually working constantly telling the muscles to work even when they were supposed to rest at night when he slept.  This causes muscle wasting or the depletion of your muscles because of overwork. He kept telling doctors that something was wrong; the only thing at that time they could come up with was low potassium.  Two years into all of this, with tremors, and panic attacks he finally got his doctor to admit him to the hospital for testing.  He was tested for everything you can imagine including multiple myeloma cancer.  The only thing that the doctors could come up with is ALS/ Lou Gehrig’s disease.  Did you know that ALS is a diagnosis from exclusion, that means they don’t know what it is or what causes it so they call it ALS.  Shortly after this a friend of mine came to us and begged us to get tested for Lyme disease, because even though we had received the standardized test for that, in order for Lyme to be an accepted diagnosis you must register three bands on the test, Forrest only registered two.  We consented to see a specialist because ALS was a death sentence and we refused to give up.  We knew nothing about Lyme at the time other than the basics and really didn’t believe that it could be, but we went anyway praying for an answer. I knew that something had to be causing this even if the doctors had shut down and assigned him with ALS.  We were even told that Lyme wouldn’t kill you. HALF TRUTH.  The bacteria won’t kill you but the side effects it creates will. Side effects such as ALS.

              When we made our first appointment with the specialist, she immediately gave us hope, after discovering that Forrest had lived in the southeast Texas piney woods as a child, worked in the logging woods as an adult and had camped fished and hunted his whole life, she told us it was a very real possibility.  The first step was to have him DNA tested, because if Lyme bacteria was present it could be hidden deep down in his cells, and if it was it would have to be brought to the surface to be killed.  We followed her instruction and did the DNA testing then the miracle of modern medicine and Gods hand became evident.   THE EVIDENCE WAS THERE.  Once the results from the DNA test came back there was proof positive that the bacteria were in the cell and an added blessing (in an odd form), proof positive of Rocky Mountain spotted fever. It was so evident that when we submitted the DNA test to the insurance (this was an out of pocket test) they covered the cost.  Now we had a double diagnosis.  Lyme disease/ALS except the ALS is the side effect from Lyme disease.   He started antibiotics immediately, and he was put on many, many supplements to try and help build his body’s immune system back up.  B-12 shots and glutathione shots, none of which are covered by insurance; only meds prescribed by the doctor are covered everything else is considered your own expense.  We have been blessed with the fact that Forrest no longer works out in the woods but sits behind a desk and is able to keep working even though there are days his exhaustion level is unbearable.  Now after three years of steadily plodding on we finally received blood work that shows no evidence of Lyme bacteria, and now we begin to try and repair the damage (ALS) that has been done.  His body will never be the same but there is hope and a new treatment.  Stem cells.  We are going to Albuquerque New Mexico. Our doctor has recommended us for treatment to help start the repair.  Unfortunately it’s very expensive. The first two treatments are $6,700.00 and the booster to follow is another $2,700.00 for a total of $9,400.00. This does not include travel expenses and hotel stay for two maybe 3 nights.  Please keep us in your prayers, and for those of you who have been praying thank you so much, you will never know how much we covet those.  There have been so many friends and loved ones who have been there for us. Some even financially. We love and appreciate you all. Where there is hope there is God. Proverbs 3:5-6 Trust in the Lord with all your heart and lean not unto your own understanding, but in all your ways acknowledge Him and He will guide your path.

We love you all!


If you would like to purchase a #fightforforrest t-shirt, they are available at the following link: 
https://www.bonfire.com/fightingforforrest/
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Donations 

  • Direct Impact Fund
    • $250 
    • 5 yrs
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Fundraising team: Friends of the Carsons (2)

Sara Carson
Organizer
Raised $845 from 11 donations
Beaumont, TX
Jessica Ringler
Team member
This team raised $2,610 from 28 other donations.

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