{Chronic Lyme with co-infection Bartonella} the "NEW" diagnosis

Jon and I celebrated 11 years of marriage on March 16. We were able to travel north, while making stops at the new family cottage and then settling for the night in Traverse City. It was great to get away. Special thanks to Jon's parents, and some friends... it would not have been possible if it wasn't for those special people... THANK YOU!!!! 

   
While we had a wonderful time away, we quickly became overwhelmed with the diagnosis of Bartonella with the Chronic Lyme when we returned home. One step forward, followed by 3 steps back. Again, it's so hard to believe something so tiny (damn tick) could cause so much destruction!!!

It doesn't help with all of the medical costs. If you follow me on facebook, you know what I'm talking about. $400 (after insurance) for a months supply of just one med is outrageous!!! Thankfully Jon's doctor was kind enough to try him on something different to help us with the financial cost. We are very lucky to have such a wonderful doctor on our side. So far the new meds are ok, but also come with their own list of side effects. Poor guy is a mess inside. 

Jon went back to work a few weeks ago, but it was only on an "as needed" basis, and he was only working 8-10 hours a week, if he was working at all. While it was great for him to have time to rest his body, it's been financially difficult and that causes a lot of stress. Unfortunately stress & Lyme do not go well together, so it's been interesting. Jon's boss called him this week and asked him to come back to work full time. Jon is still on a restricted max 8 hour day, but 8 hours is brutal on his body. We're going to give it a little time and see how things go. We've had many people ask us about going on  Disability and it is definitely on our heart, but it's not an easy process and having Lyme is going to make it 10x's harder. Nothing about this journey comes easily.

We meet with the doctor on April 4 and we will hopefully have a few more answers at that time. We've started to prepare our hearts into going to a specialist in New York. Jon's not 100% on board yet, but he's realizing that in order to get the right treatment it may be his only option. New York will open a whole new can of worms for us. It will not be covered by insurance and from what we've learned from some of our Lyme Friends is that it costs on average $4000-$5000. I'm trying not to stress about the $$ part of it, but it is wearing heavy on my heart these day. I know it will all work out, someway, somehow.

I know I'm rambling. I really should be updating the blog more often so I don't end up writing a novel each time I post, but lack of time and exhaustion from trying to keep everything together, leaves me with little time. Thanks for listening!!!

 Many of our friends and family have asked how they can help... until we meet with the doctor next week we just ask for prayers... 

Pray for...

     * Jon's physical health (head-to-toe pain, stomach issues from all the meds)

     * Jon's mental health  (depression, anxiety, obsessive compulsive, mood swings)

     * Sleep - Jon's been hit with insomnia and it's NOT fun!!!

     * Jon's doctor - to help lead us in the right direction

     * Our marriage 

     * The girls... they are SO loved and are our constant reminder that we need to push on and fight this disease. 

     * My mental health... being a caregiver is HARD and I'm tired.

     

We'd also like to Praise God for giving us answers. Yes, it sucks that Bartonella is now a part of Jon's life, but it's an answer. We would also like to Praise God for each and every one of you!!!! Without the help of our family and friends we would not be able to fight this journey. You all mean more to us than you will ever know!!! We are FOREVER touched by the kindness of others during this difficult time... THANK YOU, THANK YOU, THANK YOU!!!!

In closing I thought I would leave you with some information about Bartonella. I'm still learning new things daily, but this is what we do know...

The tick that bit Jon was also infected with Bartonella. We were so focused on the Lyme diagnosis that it wasn't until the antibiotics were no longer working that we realized there was something else going on. The blood work Jon had done a few weeks ago confirmed the Bartonella Infection. Below is a list of symptoms that go with Bartonella... the ones underlined are ones that are effecting Jon...

     
{Bartonella Symptoms}
Brain Fog
Fever
Foot/heel pain
Ice pick headaches
Photophobia
Tachycardia
Bowel problems IBS/IBD
Swollen Glands
OCD behavior
Anxiety
Endocarditis
Retinitis
Peripheral Neuropathy
Rapid relapse off antibiotics
Immediate illness following tick bite
Subcutaneous nodules
Swollen Joints
Swollen lymph nodes
Psychiatric problems
Shin pain
No response to previous antibiotics
Plantar and costal margin pain (plantar=soles of feet costal margin = The lower edge of the chest (thorax) formed by the bottom edge of the rib cage)
Rapid mood shifts
Development of these symptoms during Babesia (Lyme) Treatment
Insomnia
Sleep Disturbances
Rage
Panic Attacks
Seizures
Memory Loss
Fainting
Stretch mark rash

Sucks seeing so many things underlined, but it is what it is... time to fight on!!! I will update once I know more after Jon's appointment next week. Thanks again from the bottom of our hearts...

Much Love... the Van Dyke Crew and don't forget to MAKE EVERY MOMENT COUNT!!!!!