Do you have to hurt in order to be herxing??

No - not everyone has pain as part of their symptoms.

And some never do get pain - even when they herx

I'm so jealous of people who don't have pain.

10LymeB said...
I'm so jealous of people who don't have pain.

I'm not so sure about that. A few of my toes have pretty much gone numb. Sometimes I get some pain in them. May sound weird, but i prefer the pain over the numbness. Although, it's not a great deal of pain. But enough to say Hey, I'm still down here and bothering you.

Grandmacow -

Herxing
Not everyone herxes the same way - you could be painless or you could have pain. But herxing is normal. And herxing every other day would be normal, too.

It is tough to know for sure exactly how to interpret any reaction to a component of treatment until you get more treatment under your belt. You will soon be able to detect the patterns and causes and effects - but it will take a little time. This is why it is very important to be as organized as possible and keep track with the tools I shared in your other thread.

Once you have been able to document enough cycles of doses and reactions, and got past a couple life cycles of the microbes (this can be as long as several weeks), then you can talk over your notes with your MD and together you will be able to learn about how you're reacting.

Support
It is wonderful that your family is helping you and learning with you. In fact, this is really important - it's too difficult to get through this alone. Please invite them to join the forum and ask any questions they have. Or just read and learn.

Communication
MDs are notoriously difficult to communicate with. Lyme specialists even more so because they are usually much busier with broader burdens and demands on their time. And they have more patients needing much more interaction than the one appt per month so you can be sure there are several other patients trying to also get their attention.

But also, you're new to Lyme and you have a million questions and the MDs will not be able to answer all of them or even most of them - the truth is that this illness and treatment is probably the most complex case they will ever have and if they are not a specialist, even THEY have no idea how complex and time-consuming it will be.

And the burden will always fall on the Lyme sufferers HAVE to be self-educated and you will be required to do most of this on your own time. The system just doesn't know enough nor are they equipped to help us as much as we need it. But you're here now and this forum CAN help you.

I would prioritize your outreach:

EMAIL
Emailing is find for the non-urgent questions or requests for records, etc. Try to group all your questions into only one or two emails between appts and make sure you clearly identify the title of your email and are clear with what you need.

PHONE
For more urgent issues or problems I would only call (not email) so that you can speak to a person.
- Don't call repeatedly about different things - gather all your questions and write out a script so that you don't forget anything.
- And I would try to limit the number of times you call, too, so that when you do call, the call stands out. Call once/wk at most.
- Call during off-hours and leave a message to help document the call.
- Keep a phone record of all the calls you make - date/time and name of person you spoke to and the reason you're calling.

LETTER
And for the really important communication and requests for records/labs/scans please write a short letter and mail it. Typed or hand-written and make a copy for yourself. Written communication with your signature carries more weight for anything that needs to be documented.

The more organized you are and the more you streamline your communication, the more respectful response you get. Still, at times, you can get lost in the shuffle of a busy medical office. If you have an urgent problem and more than two days have passed since you called and spoke to someone or left a message and you haven't heard back, then call again. If it's really an emergency - you need to get to the ER or Urgent Care.

Hope this is helpful!

-p