Merry Month of Lyme

Fatigue. Anger. Sadness. Loss.

Money. Lethargy. Head pain.

Having my eyelids peeled back with tweezers till I am forced to glare at reality. 

Witnessing the worst and best of people.

That's what Lyme Disease means to me.

Lyme means false diagnoses for my family. It means an internist sweetly asking if I want an antidepressant when I complain about being lethargic. It means a pediatrician telling me that my daughter is stressed (hence her air hunger) and insisting that a positive Lyme test is a FALSE positive. It means that when band 41 came out positive on my son's first Lyme test, more than four years ago, it went unacknowledged by two neurologists and a psychiatrist who struggled to figure out why a 9-year old kid would try to kill himself.

It means that PANDAS and Lyme are entwined for my son. It means that Lyme was probably always there, but strep pulled the trigger. It means that there are many fantastic PANDAS doctors who are still relying on LabCorp and Quest tests and are therefore telling patients that they do not have Lyme Disease when in fact they do.

Not everyone has Lyme Disease and co-infections (Bartonella and Babesia are some of the more insidious and evil ones.) But Lyme and co. is not called the Great Imitator for naught. Chronic Fatigue, Fibromyalgia, arthritis, lupus, etc. etc. are many times induced by Lyme Disease. Lyme: the disease that spawns autoimmune disorders. 

Lyme means that the government is not supporting me through legal and medical measures. I happen to be positive for Lyme Disease by CDC standards because I'm healthier than my child; therefore, my body can make the antibodies and fight this bacteria (to some extent.) The CDC ignores people like my son, who has been too sick for too long to make the antibodies to fight Lyme. The IDSA (Infectious Disease Society of America) believes in tests that continue to give false negatives, tests that only examine a few of the tattle-telling bands of Lyme. Just this past year, my government increased its estimate of NEW Lyme patients each year from 30,000 to 300,000. Fifth grade common core curriculum teaches place value. How is it that an estimate is off by this much (per year?) And...to tell you the truth, I don't think I was counted in that 300,000 last year. I don't think my daughter was counted either. Make that 300,002. Maybe the government is not smarter than a fifth grader.

Ummm...wouldn't ya think this is an epidemic? Like, worse than the 100 or so cases of measles that keep making the newspapers?  And...how about those studies that show that Lyme and co-infections can be passed through the placenta to infect the unborn child? How about all those studies--conducted by IDSA researchers--that show that 3 weeks of doxycycline are not enough to kill off the Lyme bacteria? Hello? Anyone home?

I took my daugther to the homeopathic practitioner today. I know that my bright child is struggling with attention and focus. I see it at home. Hourly. We came away with a list of supplements and remedies. And another bill. I like this woman a lot. I don't like the bills that are associated with her and with every other doctor we see. I would love to take my son, my husband and myself to this homeopath, who uses a zyto scan and therefore has access to information that blood tests don't show. I wish the zyto scan was not "so alternative" and would be covered by insurance. Someday. 

I came home, through thick traffic, to help my son with his math homework. He continues to struggle with math. Call it PANDAS. Call it Lyme. Call it Bartonella. I love algebra but my firstborn does not. Lyme brain. I was tired, just wanted to be alone. My husband made dinner. What would I do without him? I took the medicines out--the ones we take during dinner. The ones we take away from food. Love that Byron White A-L. I added one drop Saturday night (to make 10) and woke up extra tired as well as depressed on Sunday. Reverted to 9 drops Sunday night and woke up OK on Monday. As I sit here, propped against pillows, I feel electric zaps in my leg. My entire head aches as if my hair has been in a ponytail all day. I walk around dizzy during the day. But no one knows. And frankly, no one has time to care. 

Treat the Lyme and the autoimmune diseases will be easier to handle. Treat the Lyme and maybe I won't end up with Alzheimer's. My grandmothers lived to be very old. How will Lyme Disease affect me? Will I be able to bicycle when I'm 90? You see, another big problem with Lyme (shhh! It's a big secret!) is that it NEVER goes away. 

But, if we keep our bodies super healthy, we will have the strength to battle the bacteria and keep it under control. Exercise, low or no sugar, healthy foods. Must avoid anything inflammatory. I've gone gluten-free but I swear, I need chocolate! Dark chocolate is bad enough to a milk-chocolate lover but chocolate without sugar is impossible! I have no energy. I can't handle caffeine. I'm not a big drinker. Aside from my Lyme meds, I don't do drugs. Must I not have even a single vice? 

I received a message today--a very kind message--from a representative of an organization that really didn't want much to do with my family when we lost the financial ability to belong. At the time, I was upset but too steeped in my son being hugely ill, too ashamed that although we look OK on paper, we didn't have the funds to "even pay X much." It all came back to me today, through this person's caring, and I cringed. On and off all day, my eyes welled up. I guess I never took time to grieve this loss before. When I think of it, this organization could have done so much to help us. If my child had been diagnosed with cancer, I don't think we would have been treated this way. But depression, PANDAS, Lyme? What a crazy cocktail.

Well, these crazy medicinal cocktails, from IVIGs to supplements to all kinds of doctors and therapists who won't or can't work with insurance have done us in. My husband and I have brought our kids to doctors who could help--as have many other parents in similar positions. These doctors and their remedies cost money. Insurance covers only a fraction of these bills. We've gone through savings and incurred debt. I mean, who wouldn't? These are our children! And the doctors we see are those who risk a lot to save our children. I can't blame them for not being able to work within the system. Heck, the system would've locked up my baby. 

So now we're faced with a major financial setback that has no chance of going away unless we win the lottery (oopsies, we don't play.) We still have our home, but our mortgage payments are often late. Sometimes, we have to wait for the next paycheck before making any new purchases, including grocery runs. We can't afford vacations but we'll do everything we can to ensure that our daughter gets the braces she needs on her teeth and that both our kids see specialists who can treat them. We have no college savings but we'll find ways of helping our children go to decent schools when the time comes. I had a big birthday that came and went without any sort of celebration. My inlaws made sure that my son had a real bar Mitzvah. I'm stressing about camps for summer and applying--and getting approved--for scholarships. This is what Lyme and PANDAS have done to my family. 

And then there's me. I teach and I'm tired. I come home and I'm tired. I'm always tired. Blah blah blah. That's how my kids will always remember me. But I can bicycle 25 or 50 miles.

We're heading in to Memorial Day weekend, and for the first time in a long time, I've made arrangements for Saturday, Sunday and Monday. We're spending time with good friends. I'm getting OUT. For too long, we've been secluded, avoided having guests (well, who wants to see the broken ceiling in our kitchen!?) Having guests stresses me out even though my husband does the bulk of the cooking. I used to plan parties all the time! I love people! So, I'm starting slowly with people who don't judge me. I will bake gluten-free, dairy free, full of sugar and chocolate brownies for the party we are attending at another friend's house. I will live and enjoy my time with people who have stood by us, made us laugh, given us hugs.

For although this has been a most surprising and difficult journey, (and I've met some difficult people--but I won't list them here,) I have somehow surrounded myself with the finest people around. We have friends who never left us. We have new friends who have learned about Lyme through us and we have friends and supportive acquaintances in the PANDAS and Lyme communities. We have found treasures...from the teacher who tutored my son through his bar Mitzvah to the educational advocate who helped us deal with the school system to the doctors who have given us hope. 

Lyme Disease and co. and PANDAS are horrible and I don't wish them on anyone...well, I take that back. I know I'm a fifth grade teacher and I try to find the best in everyone, but I just can't be that nice. I do wish Lyme on a couple of people. There. I actually wrote it.

However, these diseases have also led me to know a lot more about the human body, neurology, immunology, the will of people and natural medicines. They have also brought me to know many more than a handful of the best people on earth. 

You know who you are. XXOO