Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Jon's wonderful article is self-explanatory, but I just wanted you to know that Buckmaster has published his work before and that he has been a great advocate for recognition of and treatment for Lyme disease. He is a prime example of how Lyme and coinfections can trigger other diseases such as ALS. He is a darn good writer as well.
I split the article to make for easier reading. Ann - OH
From Jon: "Here is my follow-up story published in the Buck Masters August issue. Since the print of the story I have had my right lung collapse twice. To repair the lung I had talc blown in my rib cage. I am finally back at home to recoup after a long stay in the hospital."
[Published in Buckmaster magazine - August issue] "Fade to Black and Back" By Jon Davis
``Dad? Dad, what's wrong? Say something!''
I couldn't make a sound. A quadriplegic, I couldn't even move. My son Nathan and I had just done a maneuver we had done dozens of times before to clear my lungs, but this time it didn't work. Mucus plugged my windpipe and it wouldn't budge. I was suffocating.
At the same time, my hospice nurse, Kimberly, was arriving to draw a blood sample for monitoring my blood thinner. Nathan and the nurse tried to do the maneuver again to open my windpipe, with no luck. They could see my face changing color before their eyes, turning pale and then gray.
They called for Nancy, my wife, who immediately grabbed the phone and dialed 9-1-1. I could feel my lungs starving for air and my vision fading to black. I could hear everyone calling out my name in panic as they did chest compressions to try to get the air to move. I had become completely non-responsive, with an erratic, faltering heartbeat.
Fortunately, the emergency squad made it to my house within minutes. When the emergency medical team got into my room, Nathan picked me up under my arms to put me on the gurney, which dislodged the plug and allowed me to breathe. I was rushed to the emergency room, where the doctor recognized me from several earlier visits to the E.R.
He stated to Nancy that I had a progressive disease and would not likely survive, and asked if she wanted him to give me a dose of morphine to make me ``more comfortable''. Nancy knew that I was in respiratory failure and that a shot of morphine would further suppress my breathing.
``Comfortable'' would mean dying. Nancy got angry and told the emergency room doctor that if she wanted to put her husband to sleep she would have taken me to a veterinarian.
She told him to either put in an airway, or to give her a butter knife and a straw and she would do it herself.
Just then my respiratory doctor arrived. He ordered the ER doctor to put in an airway. Then he dragged Nancy to an adjoining room. I was in the ICU for the next two weeks.
When diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease) back in April 2002, the neurologist told me I could expect to die and had given me three to five years to live.
Three months after this news I was diagnosed with Lyme Disease and five co-infections. I believe the Lyme Disease caused the ALS.
At the time of this ER visit I had developed double pneumonia and had almost died right on schedule with his prediction. What he didn't know about me was my drive and determination not to lay down and die.
I knew it was likely that I had got Lyme disease from a tick bite while deer hunting in December 2000 in southeast Ohio.
By 2003 my hunting season was very different. I needed help from Nathan to get into my cammo and boots. Getting on the four-wheeler was almost impossible, too. My friend Dale Smith went to the south edge of the property we were hunting on, and Nathan went to a stand to the north.
I was sitting on the footrest of my Polaris looking down into a ravine. I had sat there for about 45 minutes when I heard rustling in the leaves and saw a doe come into the ravine. I had my 20 gauge propped up on the front rack looking at the deer less than 40 yards away. Excited to have a slam-dunk shot opportunity,
I raised the barrel and tried to get the gun up and sighted. I began to struggle with the stock. Trying with all my strength, I still was not getting the butt up on my shoulder. After a couple of attempts I felt I had it lined up and fired.
The doe bolted and ran down the ravine. In a short time my son came to investigate. He looked around and found nothing. A little while later, Dale came along and checked as well - no hair and no blood.
I figured I shot over its back and completely missed, fortunately. I hate the thought of wounding one of God's creatures and not making a quick kill shot.
I was too weak to bring my gun up because of nerve damage from the Lyme Disease. I was put on intensive antibiotic therapy in July of 2002 and have been taking it ever since, with no end in sight.
My health was declining and spiraling out of control. My six-foot frame that once weighed 175 pounds, withered to 110 pounds in January of 2006. That is when I could no longer swallow solid food. I had a feeding tube installed just two months before my near death experience.
No one expected me to survive but through it all, my wife continued providing herbal supplements by sneaking them into the hospital and having Nathan stand watch while she gave me liquid supplements through the feeding tube.
My respiratory doctor and surgeon, who had been reluctant to do a tracheotomy, were amazed that I was rebounding and gaining strength. After ten days the doctors went forward and put the trache in.
A year later my weight climbed up to 215 pounds. The only regret I have is not getting the feeding tube and trache sooner. They are tools that could have helped me rebound sooner.
After going home April 1, 2006 my family cared for me with assistance from Hospice. I slowly gained strength until it was recommended that I go to an alternative therapy doctor in Kansas.
With his guidance and products I have regained even more strength. Also my speech has improved significantly even while on a vent. Although I am still too weak to move my arms or legs I can wiggle some of my fingers and toes.
I can use intense concentration and envision myself doing cross-country snow skiing movement. I focus my brain to signal my arms and legs and can feel a weak response in my limbs.
This doesn't sound like much of a life but I am determined to fight through this nightmare. Other victims of this disease that I have spoken with through the years have passed away from pneumonia, diaphragm failure, or they simply lost their will to live.
In my opinion, Lyme Disease is an epidemic affecting up to five hundred thousand people each year in the United States.
The main problems with LD are improper diagnosis and insufficient treatment, allowing a resurgence of the disease. Lyme can be misdiagnosed as over one hundred different conditions.
It is recommended that symptoms and environmental risks be used for diagnosis, with blood tests for confirmation, since blood work is unreliable on its own.
One reason for this unreliability is that the blood tests are not sensitive to local strains of the Borrelia Burgdorferi bacterium. U.S. blood tests use Lab Strain B-31, which is not even found in nature.
One of the stumbling blocks is that the co-infections may be caused by different forms of bacteria, virus, parasites, or mycoplasma. Another scary fact is that these diseases can be spread through blood transfusions, as there are no reliable screenings of donated blood products and donor tissues.
Carriers of these infections can be any blood-feeding insect, including ticks, mosquitoes, fleas, and biting flies.
In my opinion there are many important treatment options for Lyme Disease, such as pharmaceutical antibiotics, herbal supplements and alternative treatments like oxygen therapy.
It is important to maintain a total body Ph that is neutral or a little above. This promotes a healthy immune system. Treatment by a Lyme-literate physician is crucial. Finding that physician can be difficult.
Doctors in several states have suffered legal sanctions for prescribing therapy for Lyme Disease patients who had been misdiagnosed by conventional medical professionals.
An investigation by the office of the Connecticut Attorney General brought to light several problems with the writing of the Infectious Diseases Society of America's (IDSA) 2006 Lyme Disease guidelines.
These problems included committee chairmen and members with financial and professional conflicts of interest in the treatment of Lyme Disease. The IDSA findings were compromised by committee members and the chairmen who also served on Lyme disease committees for another medical association.
These same members helped the second association write guidelines that were used to reinforce the guidelines of the IDSA committee.
Since the IDSA guidelines influence treatment protocols and insurance reimbursements, these conflicts of interest have a potential impact on the health and financial well-being of Lyme Disease patients.
The Attorney General's office has directed a new, impartial panel to evaluate all relevant science and research on Lyme Disease. Their goal is to come up with guidelines that reflect all evidence, including divergent opinion.
Lyme Disease patients also face a challenge from the Center for Disease Control. That group is tightening, rather than broadening, the criteria for a diagnosis of LD. This means that potential cases of Lyme Disease are not reported to county health departments.
For this reason, the exploding numbers of Lyme cases are seriously underreported in the United States. In my opinion, if the presence of Lyme Disease was more commonly known, it would cause property values to plummet in affected areas.
It is now March of 2009. Seven years into this disease, my condition has stabilized and slightly improved since that trip to the ICU in September of 2007.
Finally, you must also maintain a positive attitude about life and keep faith that the Lord is watching over you and giving you the strength to battle this devastating disease. Don't lay down and die.
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
His positive attitude is very inspiring! I wish I could be so hopeful! I will think of him next time I am down. And he's right, we must remember the Lord is wtih us through this battle!
posted
People in such dire straits who use their experiences to help educate others---got to take my hat off to them. They are not in the majority, I think.
Thanks Jon. Best wishes to you and your family.
Posts: 8430 | From Not available | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
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Thank you, Lou. I sent all the messages here on to Jon. And I will send any more that people post. He is such a great guy and what a spirit!
what a wonderful, INSPIRATIONAL ROLE MODEL YOU ARE!!
Wow can you write from your heart and make such important statements that really hit home. Once I started reading, I read it all ... your story just flowed from beginning to the end.
You didn't do any name-calling, etc. Just factual info of what you have experienced 1st hand.
Thank you so much for describing what you have gone thru; the political mess of not receiving prompt treatment by competent ILADS, chronic lyme literate mds promptly.
what they go thru to fight to treat and help us get into remission.
Jon, I pray God will grant you a miracle and let you fight the Lyme/co-infections and NOT to have to deal with ALS too.
Best wishes to your wife and son, Nathan, who have helped and been your 24/7 support to lean on during the trying/crying times.
posted
Thank you Ann! I know someone in the Cleveland, Ohio area with ALS from Lyme. He was improving but the got worse. He is seeing a doctor in PA. It is of course hard for him to travel further. His wife is his caretaker and I know how hard it has been on her too. I keep in touch with them as much as possible. I sent her this to read.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
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Thank you for keeping in touch and for sending this on to her, Amy. Just knowing someone cares means so much.
I got a note from her, saying she was glad to read Jon's article and catching me up on how they are doing. They have been in touch with Jon, too.
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