TomVal
Well Known Member
With the approach of warmer weather I would like to share a very sad story of a pilot friend and his wife that both contracted Lyme's disease during a camping trip several years ago. Below are Tom's most recent comments. I've deleted elements of his post so at times the post is segmented. Hopefully this post will be a reminder for all to take proper precautions when enjoying the beautiful outdoors.
" I haven't spoke to anyone since last summer so I apologize for not keeping you informed.
The lack of phone calls are a blessing because I'm now struggling with speaking and talking. It's been gradual slow decline over the past few years and its getting hard to have any long conversations.
I also apologize for the long email here but I don't know any other way to explain the past 27 months without detailing the nightmare.
This all started my last month in the MSP CPO, my last month of duty there. In early December 2011, I was sitting at my desk when I felt a bizarre feeling in my left leg. After inspecting my leg I found my left calf to be twitching like I was plugged into a TENS unit.
Doing what every guy does I tried to ignore it but when my right leg started doing the same thing I became concerned.
I met with my FAA doctor in January 2012 which started the journey of brains scans, MRI, CT scans and the entire scope of blood tests. Mid January while waiting for test results, my wife Diane woke on January 17 to find that her legs, feet and arms were numb.
I was told that everything was normal except that I had acute Lyme disease which was a relief to know that I didn't have a brain tumor, MS or some other life threatening illness. This is transpiring while I started 744 school and Diane is having brain scans, spinal taps, MRI, CT scans, biopsies etc.
I was told take 10 days of doxycycline and I should be ok. Long story short, after 27 months of trying to get well, I'm struggling with talking, I've lost 40 lbs with muscle loss and loss of strength and flexibility which has left me needing help with my daily routine of bathing, getting dressed etc.
Diane and I both have unresolved Lyme disease which has been confirmed by a blood culture after trying for 20 months to rid ourselves of the infection with oral antibiotics, herbal remedies, homeopathic medicine, electro pulse frequency therapy, and chasing all over the map with countless doctors."
There is a great divide in the US medical community about Lyme. There are two opposed medical groups that have extreme views on this disease and treatment.
The CDC in 2013 forecasted 30k new cases for the year and in August they admitted that they had registered 300,000 new cases at that point in time.
Since we were not improving we tried any doctor willing to help. Few of the Lyme doctors are in network and their cost are not covered by insurance. Medica has refused to cover our treatment the first 26 months. I have appealed by hiring a lawyer who wrote a request to include my primary lyme doctor in gap coverage and recover some of the $30k we have paid out of pocket. All was denied. This is not unique to Medica. This is a issue with all insurance companies and Lyme disease.
The reason I share this is because I know that we have several pilots and or family members dealing with Lyme. I have been called personally by several out of frustration and also concern for our situation. I would really like to share my journal of what occurred with Medica over the past two years with you because it could be insight for lack of coverage for Lyme treatment for any pilot or Delta employee.
Right now Diane is not being treated and her symptoms for the most part have remained the same for the past 18 months. She basically has become my full time care giver.
I am now being treated by an in network doctor after a year of trying to get in to see her.
I had a PICC line, catheter placed in my arm accessing my heart and I am doing in home infusions trying to arrest the progress of this disease. I am very weak and my blood count has been affected by the shear amount of antibiotics that I have been exposed to. Because of this my doctor was afraid to administer the full dose required to treat this with IV. She is gradually increasing the dose over time to see if my liver and white cells can tolerate the treatment. Weekly blood test are taken at home by the nurse that is in charge of my PICC line care. I am on five different IVs at this time.
We are planning to go to Golden, Colorado for treatment to resolve toxins from the antibiotic IV at the end of the month. We tried last month but I was unable to travel do to my weakness.
I also am planning to start Hyperbaric Oxygen treatment locally which has helped some people with Chronic lyme. The detox in Colorado and the oxygen therapy are not covered by insurance but we need to try everything in hope of regaining our health.
. Several months ago he ( Gary) organized and opened an account to help us with the out of pocket medical expenses. He was the only person that I had shared our medical expenses with. Our initial reaction was to say please don't do this, we are ok and it's not necessary. It fell on his kind, deaf ears.
My hope was to be back at work a long time ago but reality is it may never happen. I had hoped to use this fund to help other employees dealing with Lyme because I know full well what they are going through.
While I struggle daily I'm so grateful for family, friends and my NWADAL family. I miss so many of the wonderful friends and coworkers more than you could imagine.
While I'm frustrated beyond words with the illness, I'm truly grateful to have what I do, which includes many friends, my family and an angel for a caregiver.
" I haven't spoke to anyone since last summer so I apologize for not keeping you informed.
The lack of phone calls are a blessing because I'm now struggling with speaking and talking. It's been gradual slow decline over the past few years and its getting hard to have any long conversations.
I also apologize for the long email here but I don't know any other way to explain the past 27 months without detailing the nightmare.
This all started my last month in the MSP CPO, my last month of duty there. In early December 2011, I was sitting at my desk when I felt a bizarre feeling in my left leg. After inspecting my leg I found my left calf to be twitching like I was plugged into a TENS unit.
Doing what every guy does I tried to ignore it but when my right leg started doing the same thing I became concerned.
I met with my FAA doctor in January 2012 which started the journey of brains scans, MRI, CT scans and the entire scope of blood tests. Mid January while waiting for test results, my wife Diane woke on January 17 to find that her legs, feet and arms were numb.
I was told that everything was normal except that I had acute Lyme disease which was a relief to know that I didn't have a brain tumor, MS or some other life threatening illness. This is transpiring while I started 744 school and Diane is having brain scans, spinal taps, MRI, CT scans, biopsies etc.
I was told take 10 days of doxycycline and I should be ok. Long story short, after 27 months of trying to get well, I'm struggling with talking, I've lost 40 lbs with muscle loss and loss of strength and flexibility which has left me needing help with my daily routine of bathing, getting dressed etc.
Diane and I both have unresolved Lyme disease which has been confirmed by a blood culture after trying for 20 months to rid ourselves of the infection with oral antibiotics, herbal remedies, homeopathic medicine, electro pulse frequency therapy, and chasing all over the map with countless doctors."
There is a great divide in the US medical community about Lyme. There are two opposed medical groups that have extreme views on this disease and treatment.
The CDC in 2013 forecasted 30k new cases for the year and in August they admitted that they had registered 300,000 new cases at that point in time.
Since we were not improving we tried any doctor willing to help. Few of the Lyme doctors are in network and their cost are not covered by insurance. Medica has refused to cover our treatment the first 26 months. I have appealed by hiring a lawyer who wrote a request to include my primary lyme doctor in gap coverage and recover some of the $30k we have paid out of pocket. All was denied. This is not unique to Medica. This is a issue with all insurance companies and Lyme disease.
The reason I share this is because I know that we have several pilots and or family members dealing with Lyme. I have been called personally by several out of frustration and also concern for our situation. I would really like to share my journal of what occurred with Medica over the past two years with you because it could be insight for lack of coverage for Lyme treatment for any pilot or Delta employee.
Right now Diane is not being treated and her symptoms for the most part have remained the same for the past 18 months. She basically has become my full time care giver.
I am now being treated by an in network doctor after a year of trying to get in to see her.
I had a PICC line, catheter placed in my arm accessing my heart and I am doing in home infusions trying to arrest the progress of this disease. I am very weak and my blood count has been affected by the shear amount of antibiotics that I have been exposed to. Because of this my doctor was afraid to administer the full dose required to treat this with IV. She is gradually increasing the dose over time to see if my liver and white cells can tolerate the treatment. Weekly blood test are taken at home by the nurse that is in charge of my PICC line care. I am on five different IVs at this time.
We are planning to go to Golden, Colorado for treatment to resolve toxins from the antibiotic IV at the end of the month. We tried last month but I was unable to travel do to my weakness.
I also am planning to start Hyperbaric Oxygen treatment locally which has helped some people with Chronic lyme. The detox in Colorado and the oxygen therapy are not covered by insurance but we need to try everything in hope of regaining our health.
. Several months ago he ( Gary) organized and opened an account to help us with the out of pocket medical expenses. He was the only person that I had shared our medical expenses with. Our initial reaction was to say please don't do this, we are ok and it's not necessary. It fell on his kind, deaf ears.
My hope was to be back at work a long time ago but reality is it may never happen. I had hoped to use this fund to help other employees dealing with Lyme because I know full well what they are going through.
While I struggle daily I'm so grateful for family, friends and my NWADAL family. I miss so many of the wonderful friends and coworkers more than you could imagine.
While I'm frustrated beyond words with the illness, I'm truly grateful to have what I do, which includes many friends, my family and an angel for a caregiver.
Last edited by a moderator:
