Thank you, County, for the letter...

Hi,

I've been SO fatigued lately; I can muddle through what needs to be done (puppy, etc.) but anything extra, no way. The Doxy is knocking me for a loop with nausea day in, and day out. I think I missed a pill or two here or there, my brother-in-law had another major heart attack and more stents, so sitting in ICU a lot with my sister. Not an excuse, I've never been good at pills and this whole Lymes thing still seems just so UNREAL. But then, like today, I get slapped with reality--a letter from the County, saying it was "reported to us by your physician that you tested Positive for Lyme Disease, enclosed is a Fact Sheet, we have to report cases to local health departments..." Other than my doctor and the County, who needs to know??? What other "local health departments"???

The most painful thing I feel is a constant ache between the upper shoulder blades, not really at the base of the neck, it's down further, but it's there All. The. Time.

I'm just tired and now I'll forever be wondering if it's lyme related or something else. Every illness now will make me wonder if it's a coinfection. I'm trying to read the books, there is SO MUCH information and SO MUCH to do! And now since my physician says "after 21 days of Doxy, you're cured" will any appointment related to lymes after that be covered by my HMO. Just so darn complicated.

Lynda, please breath and breath again......

You need to relax and be calm. I know everything seems topsy turvy but it will all be okay.

Baby steps to all the forms and whatever.....

Your sister needs you for your brother-in-law and anyone that needs information from you can just wait.

What is their hurry??? You will be here tomorrow.

Breathe and breathe and find the peace.

Do not tackle more than you WANT to.

It will all be there tomorrow....

As for the County and what they require someone else will come along and explain that, because in my state it is a non-issue. However, from what I have seen it is gobblygook governmental paperwork and it is nothing that you should fear.

Remember you are in charge. Now breathe and breathe again.

Hugs of comfort coming from my home.

Hi Lady!

Well, the fun just doesn't end for you, does it?

All good input so far - only have a few things to add.

I totally agree that you have much more important things going on right now (and I love PeteZa's statement - YOU'RE IN CHARGE!).

Fatigue
You also need to make sure that you are managing your stress--fatigue is a HUGE red flag that you need to give your body some attention and not overdo it. Now is when all of these opportunistic infections and body systems that are clambering for your body's resources are overwhelming your immune system. You gotta stay on top of this demand and in control so that your body doesn't crash and you can be there for your family during their time of need, while protecting your health.

Rest as much as you possibly can, be sure to eat but be mindful of what you're eating, drink as much water as possible, don't overdo the caffeine, and meditate, BREATHE as much as possible. Don't give into the stress.

Pain
I am thinking the pain you mentioned might be stress-related. I used to get that pain in the same spot when I was working and under deadline. It was such a hassle. Try stretching and changing positions while you're sitting in the waiting room w/ your sister... get up and move around at least once an hour. The breathing exercises will be very helpful, as simple as it sounds.

Detox
It's not a big deal to miss a dose of abx or two - not ideal but it happens to all of us. What is absolutely critical is detoxing. So some things you can take w/ you to the hospital so you have healthy snacks on hand and don't have to rely on the vending machine:
- carry a thermos of warm green tea or even better - broth (veggie, chicken, beef) so you'll be less inclined to load up on bad coffee

- carry a big jug of water - maybe add lemons or limes or cucumbers (I always love cucumber water in the summer),

- grab some nuts, apple, hummus, cut up veggies that grocery stores have available now

- bring your pillow, head phones so you can GET SLEEP whenever you can.

Education
The learning process of Lyme can feel like a huge burden at the beginning - you have decisions that you need to make now and not a lot of info to go on so you're playing catch up But it does take time to get up to speed so don't worry about it. I wasn't able to really apply much brain power to learning about lyme until 6+ months after I started treatment.

The rest of this can wait but wanted to share this info as well:

Reporting
The CDC's surveillance case definition is primarily engaged to track trends in diseases throughout the country. Since they have no other means for reporting new cases of Lyme every year, this surveillance process tries to cover that as well - despite the fact that it is anything but accurate or efficient for communicating the spread of Lyme & co. But it's what we got.

This inaccurate process for actually recording new lyme cases popping up is reflected in what the CDC and IDSA cite in their "329,000 new cases" type of publicity announcements like they did back in 2013.

As part of the CDC's reporting process, each state has its own process for reporting to the CDC and likely, each county in the state comes up with their own protocol of reporting to the state - all part of the same reporting process.

Generally, the process requires the patient's MD and/or labs to report CDC POSITIVE results to the County/State Health Dept., (despite the CDC's warnings otherwise, the reporting uses the CDC's two-tiered tests and test interpretation criteria designed specifically for surveillance purposes, not for diagnostics).

In turn, the County or State Dept. of Health is required to follow up and often this requires a 40 minute phone call w/ the MD to verify the particulars of the case. Because the process can be cumbersome and time-consuming, MDs and DoH's don't do it or do it incompletely and that is probably the biggest reason why most Lyme cases are not reported, and therefore the CDC's statistics are so bad.

The County reaching out to you is likely their way of following up according to its protocol for reporting infectious diseases (although in many states, the County follows up w/ the MD, not the patient but maybe they didn't get complete info from the MD, maybe the MD was unresponsive, etc... Most of the time, if the info is incomplete they simply won't forward the case as a "reported case of Lyme" on to the State, CDC, etc... so it gets missed.

However, this automatically drags us into the process. On the one hand, we really really need them to do this more accurately so that their reporting is much much more accurate than it is. On the other hand, the reporting is geared toward surveillance criteria and ultimately fails to accurately reflect how endemic Lyme is. While their ineffective process really isn't our problem to solve, it certainly is our burden.

You'd think by the 21st Century they'd have made some progress on this front. Mead's testimony during the Congressional Hearings from several years ago and the Institute of Medicine's Lyme workshop in 2010 had some "this is how we're going to do this better" promises about better case quantification but here it is 2016 and what has changed?

So, that's a little background on the purposes of the information they want from you so it's in no way urgent but it is important. If you can find the time, it would be good to help them complete the reporting process.

I'm sure that in some states there might be more to it and of course, in the back of anyone's mind reading this, you're wandering "what is the risk I'm not seeing - how can this communication backfire on me?" --which is quite understandable. I'm in the process of looking into this more so maybe I'll be able to answer that question some day.

Hang in there and take your days and your challenges one at a time. Check in when you can!

-p

All excellent comments. Just wanted to agree and say, "Please make sure you are the priority, everything else is secondary, tertiary, and further down on the list."