Before we begin, this is one of my favorite professional pictures of Heather from 2002. Those eyes, that smile, the hair, the innocence (hmmmm, she was 20 and living in NYC we will leave innocence alone). Yes, I have been absent from blogging for a few months. It's difficult for Heather to read about her medical journey while she is living with her diseases each and every day. She loves spreading awareness and giving updates for friends and family, but we both just needed a break and.......we're back!!!!
Hopefully you heard through social media and the news that May is Lyme Disease awareness month. I have been going through my earlier Lyme blogs and it just makes me so sad that there hasn't been much progress with affordable treatment plans, many main stream doctors are still uneducated about Lyme disease, there is still denial that chronic neurological Lyme is a real medical condition, tests are unreliable, and there isn't a cure.
It breaks my heart that three and a half years later I still see Heather struggle with chronic and sometimes extreme nerve pain. She also has pretty bad fatigue issues. This is 100% Lyme. I could go on and on with my frustration, but my focus needs to be on helping Heather, being her advocate, and making sure she continues to have the best health care and doctors. Seriously, her medical team rocks.
Heather is strictly following a new diet to help with Lyme and Liver disease. They ran some crazy Food Inflammation Test that measures the IgI and Complement reactions to 132 foods and additives. For some people (Heather) the immune complexes may lead to various symptom that can affect any tissue or organ. From what I understand, there are foods that aren't the best for Heather's already compromised immune system.
They aren't food allergies, just foods to avoid. Heather's list of restricted foods include wheat, cow's milk, pear, raspberry ( her favorite), cabbage, almonds, Aspartame, basil, flounder, pecan, safflower seed and scallops. I know, all very random, but she is following these restrictions and feels she gets some relief. The cow's milk was difficult to navigate, but who doesn't love goat cheese and if you can find Sheep or Buffalo butter, it is pretty amazing. We have all been eating better with Heather's diet. Lots of protein, potato, rice, salads, veggies, shell fish, salmon, etc. We also watch our salt intake. Amazing how you don't need food to be super salty.
Heather is now seeing a holistic Doctor for her Lyme treatment. Remember, when she was first diagnosed, she had a PICC line for her antibiotics for 6 weeks. Sadly, that was probably not the best for her liver, but who knew she had a bad liver, and she was so sick the treatment was necessary. Since additional rounds of aggressive antibiotics aren't for Heather, her holistic Doctor is helping her with supplements, vitamins and diet. They are working towards a healthier gut which is a crucial part to maintaining overall wellness.
Heather still has extremely painful nerve pain episodes and extreme bouts of fatigue. All of that is 100% Lyme in fact is related to the Bartonella co-infection. People with Lyme also have several co-infections and they very difficult to treat. Recently, on one of the Lyme groups I follow, people were discussing nerve pain in their feet. There were hundreds of responses with people talking about the varying degrees of pain. Heather's description is that sometimes it's just tingling. Sometimes the pain is like intermittent stabbing in the balls of her feet. On her worse days it can feel like hot nails or fireplace pokers shooting up from her toes to her knees. I can't even imagine.
On her recent visit with her neurologist, they did another prick test to see what she can feel. Sadly, she still has loss of sensation from her feet to her mid-calf in both legs. This was one of her initial symptoms with Lyme Disease. We are still hopeful that the nerves can regenerate.
Tick are no laughing matter. I don't want to spread fear about the Lyme disease, just awareness. Please check yourself, your kids and your pets for Ticks. Trust me - nobody should have to deal with the long-term effects of undetected and untreated Lyme Disease. It wreaks havoc on your mind and body.
Bottom line - we must find a cure. Heather is tough, but living with Lyme and Liver disease is extremely tough.
Please continue to keep my sweet Heather in your prayers.
xo
Lisa
Here are some excellent sites about Lyme disease
http://www.ilads.org/lyme/lyme-quickfacts.php
http://www.tickencounter.org/prevention/protect_your_yard
https://lymelightfoundation.org/about-lyme/ten-things-you-should-know-about-lyme-disease/
http://livlymefoundation.org/ticktracker-app/
http://livlymefoundation.org/resources/
