I am one of the lucky ones, in that I'm on Doxy (400 mg a day) and have seen a marked improvement. But I got off for a week and started the symtoms again. Now that i'm back on the Doxy symtoms are still lingering from when I got off. Isn't that a bad sign?
Help!
Meemer

Have you been checked for co-infections?

Merry Land is pretty heavily ate up with them.

Don't give up hope yet...

We will try to help.

OK?

Thanks Tin Cup,

You are like an angel. I have not been checked for co infections, I didn't even know about them until I read one of your pieces. My doc who is txing me pretty heavy looks like a llmd but never tested me. None of the doctors did.

I've asked the new (yet-a-new) one scheduled for 1/31 to test me and do a SPECT and MRI of my head. I hope I make it that long. I had Bells Palsy-right side of my face was frozen, headaches, weird thundering sound when I close my right eye tightly (neurologist says it's a double re-hook up of the wrong nerve to the tympany during nerve regeneration following Bells), mental fog, sensitivity to sounds. So I guess I fit into the neurological category. For a while, in the thick of it, I couldn't type. I could read the words, but I couldn't transfer the typed thought from my mind to the keyboard.

I hope this new "Lyme doc" does the tests prior to the appointment so we can make the most out of my appointment and not waste precious time. Can you be txed for co infections this far along and be effective?

I think I may have had this thing for well over a year, maybe six years.

Last year I only had exhaustion all the time and word groping. I slept all the time without feeling rejuvenated.All I could think about after finishing a task was "I have to lay down!"

Pain didn't start until this summer when my body was one agonizing lump. Pain killers made me hallucinate.

Three days into Rocephin IV and I thought my problems were over.

A month on Rocephin IV and two months of Doxy and I got off one week and I started slowly reversing. I have 4 more moths on Doxy oral. Now I have a mysterious sharp pain in my left side that I think is associated with bowel problems. It seems to come and go. It'ds the weekend so I have to wit til Monday now for her to check that.

This is a nightmare more for my husband and children than for me. There were weeks and months that I was zoned out and they had to pass my limp body wondering "what in the world is happening to mommy."

Too long a wait for llmd. I guess I can't complain. I'm one of the lucky ones being txed. God save the ones who aren't.

Meemer

1. Believe you will.

2. Stay here, and read all you have time to, as tolerated..along the way.

3. Get to a good LLMD who will look for co-infections, yes test..but also be willing to treat them empirically based on symptoms, and monitor response (the tests are not reliable as the soul diagnostic tool). Noone has just Lyme.

4. See yourself as a PARTNER with your Doc..at first, you'll be learning allot..and then you will have important input, instinct, and concerns to address WITH him/her. You must become fully educated in your disease(s)

5. Again, stay here..and be sure to read on gentle detox and immune support measures as you stay on your abx's. Our LLMD's are precious beings, but the diseases and the individualized nature of them makes treatment a difficult maze in more complicated cases, even for the very best Docs. More research and study must be done..

Till then, we have to take some of that up ourselves. This after you have had time to absorb say the ILADS Guilelines, and Doctor B's Guideines..a little at a time.

6. Believe you will be well!!

There are all kinds of cases and conditions in the spectrum of TBD's..many have gotten well..lowered the acute infection load, transitioned succesfully to where there immune systems have been able to take over..they are the ones who aren't here anymore (except a couple who stick around to help ) ..and they have all used a combination of conventional and alternative (supportive) measures to do so. All different..individualized.

There are some of us with longer, much more difficult roads..

If we stick together, keep asking questions, support out good Docs..we'll do just fine!

Lyme can infect your eyes

Your brain

Your heart

Your joints
Your paycheck
Your finances
Your family
Your home.

There is somethign however that lyme CANNOT affect, and its SO very weak due to this