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TwinGirl

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Lyme Disease
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Posted 6/18/2009 3:31 AM (GMT 0)
Is it Molly? I can't remember; it's been so long.

Do you still see Dr. Z?

Posted 6/18/2009 7:49 PM (GMT 0)
Hi! I'm not Molly, I am Molly's twin sister Dar. We both still see Dr. Z.

Do I know you? or do you just know my sister? Sorry my memory is fried!

Molly has been taking a break from the boards but will be back someday.
Posted 6/18/2009 9:20 PM (GMT 0)
Sorry! Oh yeah, Molly's screen name is like Twinofdar or something, right?! I apologize - I think I have talked to both of you, but I can't really remember - it has been about two years.

How are you doing? I just saw Dr. Z for the first time since I stopped treatment in 2007...I'm back on abx now.

I wanted to ask you if youguys got lyme here in Michigan and if you remember a bite or rash or anything. How is Dr. Z with you? What treatment are you on now, and have you gotten better?

I have a thousand questions, so fill me in on your experiences with him so far! He didn't retest me this time; he just put me on abx. He wants me to get a PICC as soon as possible for IV Rocephin.

Can't wait to hear how everything is going!
Posted 6/19/2009 12:54 PM (GMT 0)
Molly is mojo on this board. She is twinofdar on some other boards. Confusing, I know.

We really like Dr Z. He appreciates that we research our treatments and is open to suggestions on our treatments.

Was Dr Z your llmd when you stopped treatment in 07??

We don't know when we were bitten, most likely here in Mich or in Pennsylvania when we were kids. We probably were bitten more than once. We were always outside, camped a lot, went up North in summer etc.

We are both doing well with Dr. Z. Let me know any specific questions you may have.
Posted 6/19/2009 5:10 PM (GMT 0)
Did he have either of you get a PICC ? He wants me to get one to do IV Rocephin. And yes, he is the only LLMD I've ever seen.

What treatment worked well for you?
Posted 6/19/2009 7:45 PM (GMT 0)
No, neither of us has ever had a PICC line. But we respond well to orals.

If Dr Z wanted me to do an IV, I would have done it. I have been on Doxy, zith and samento. I am now off abx and using a rife machine. I need to do something for my bartonella but haven't decided what yet. I need to talk to Dr. Z about it.

Molly has been on more abx than I have. She is currently on Ceftin and Biaxin.

I did real well with doxy in winter and zith in summer, but then hit a plateau. That's why I tried rifing. I really like it, but now stuck in another plateau. I am much better after 2 and half years of treatment, but not fully recovered, so I'm going to keep trying things until that happens!!
Posted 6/24/2009 10:51 PM (GMT 0)
Hi,

 

I was seeing Dr Z for 2 years for my Lyme disease, hes a great doctor I still see him for my thyroid medication and testing. Unfortunatley he tried everything he could think to do and I wasnt getter better after 2 years so he recommended a Dr. in Saginaw to me. I have been seeing him for 2 months now and things are changing little by little, it does get worse before it gets better, but thats what has to happen to kill the little buggers. It had been suggsted that I also do the IV ABX but for me it was to stressful and too costly so the Dr im currently seeing has me on a combination of oral medications since most of my symptoms are neurological. The Dr im seeing actually had Lyme disease himself hes also a great Dr and really listens and is very through about everything. If you have any questions feel free to email me.

 

[email protected]

 

           Jess

Posted 6/24/2009 10:57 PM (GMT 0)
I've heard of the doctor in Saginaw. It's a bit further for me to drive. Dr. Z is an hour for me and Saginaw is about an hour and a half.

What are you doing differently with the dr in Saginaw?
Posted 6/26/2009 4:59 PM (GMT 0)

Hi,

He's has me on higher amounts of ABX and different ABX for the central nervous system and a couple other medications for yeast and to help the ABX to be absorbed into the tissues and central nervous system better then just using the ABX alone. Its also an hour and half drive for me but in the end I think it's worth it, I go once a month for a medication review and check up. This is my 3rd month and little by little things are changing slowly.

Jess

Posted 6/26/2009 5:16 PM (GMT 0)
Can you tell me exactly what you're taking and dosages? I have a lot of CNS involvement...in fact I think that's all that has been touch by this 'disease' I have

. I'm going to try to catch you on Facebook so we don't have to keep going back and forth on the boards!
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