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TOUCHED BY LYME: The vexations of Lyme, mold and doctor appointments

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Reprinted from LymeDisease.org with the kind permission of Dorothy Kupcha Leland
As if dealing with Lyme disease isn’t difficult enough, many folks with Lyme discover that they also have another problem–mold toxicity. Mold can severely impact your body, and coping with it can be another full time job on top of the full time job of dealing with Lyme disease.
If you live in a moldy environment, the first order of business may be to move or arrange for mold remediation. Yet that step alone often won’t put the issue to rest. You may need specialized treatment to rid your body of toxins that have taken up residence in your system. And that can be a complicated process.
“Resiliently Rachel,” a blog addressing the challenges of treating Lyme and mold, shares the author’s personal experiences with these issues.
 The following excerpt discusses how to make the most of appointments with your mold doctor. (The advice applies to LLMDs as well.)
I always go into the doctor’s office with a typed up sheet of all my symptoms and any questions I have. Between appointments, I use a notes app on my phone to write down random symptoms that come up, so when it’s time to write a list of everything, it’s all there on my phone.
I print two copies, one for me and one for my doctor, so we can both be looking at the same thing. It’s easy to become overloaded with all this new, life-changing information, and walk out of the appointment without all my questions answered. Having things written down makes it easy to check off each point as we talk about it.
I also bring any recent lab work or test results, even if I think the doctor already has them. Things can get lost or shuffled around the office, and it’s safest to bring your own.
I also bring a typed list of every single medication I’m taking, as well as the dosage. This is vital, because I see several different doctors, and each of them puts me on different supplements and medications. My practitioners need to know everything I’m taking so they don’t prescribe something that would interfere. It’s also handy. Instead of using up valuable time explaining all the things I’m taking, I can just give my doctor the list.
After the initial inputting of all the meds in the word document, it’s quite easy. I label it, “Medications I’m on as of [insert date].” Then, before each appointment, I can just alter the date and add or subtract any meds that have changed since the last time I saw the doctor. It takes almost no effort and makes a huge difference in the appointment.
The last thing I bring is a blank notepad. After each mold appointment, I usually walk out with 4-5 pages of rapidly scribbled notes. There is just so much information to take in, and there would be no way to get it all without writing it down.
It’s important to write every single piece of information: How the medicine is spelled. Where to buy it. What time you take it. How many times a day you take it. What dosage. If it can be taken with other meds, with water, or with food. If it needs to be taken on a completely empty stomach or after a meal. If ramping up, how slow/fast?
As the patient, it’s my job to ask these follow up questions. It’s of no help to me to arrive home and see in my notes “take bentonite clay,” with no explanation. It’s fine to ask the doctor to slow down or repeat something. I am the one who needs to understand my medication protocol. I also like to record the sessions on my cell phone, so that if I do miss something, I can go back and listen again.
I am lucky to have supportive parents who come to appointments with me. It helps to have them there, because even though I do the talking and the note taking, two other sets of ears can hear what the doctor is saying. On the drive home, we debrief from the appointment and discuss what was said and what needs to happen for the next phase of treatment.
While the information is still fresh in my mind, I like to go through my notes and re-write them in the form of a checklist. By doing this, I can see if I have all the information I need, or if “take bentonite clay” was the only thing I wrote down for that one.
After the checklist is done, I often have a few questions that need to be answered. So the next step is calling my doctor’s office and leaving a message with those questions.
After that, I go through the checklist, order all the meds, and re-read any new instructions the doctor may have for me. Next I come up with a timetable. If I’m ramping up on meds, I need to be reminded every few days to go up to the next amount.
I have all this information in my checklist, but now it’s time to put it on my phone. There are two places it needs to go: my medication reminder app, and in the reminders section of my iPhone. If it’s really important to remember to do it on a specific day, I’ll put it on my calendar app as well.
This whole process takes some thought and it can be confusing, but once everything is inputted into my various apps, it becomes much clearer.
Click here to read more of “Resiliently Rachel.”
Rachel, 24, first became ill at age 13. As her health improves, she writes this blog to share some of what she has learned over the years.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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