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mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 110
   Posted 1/17/2018 1:52 PM (GMT -6)   
I've been treated for Lyme and co-infections since 2009 on and off. I had a brain and cervical spine MRI without contrast done yesterday. They compared it with a previous one done in April 2016 and they notated throughout the report that things appear increased. Like right internal capsule involvement appears increased, or corpus colossal involvement appears increased. I have tested positive for Lyme and babasia in 2009 and again in 2016. I continue to take my meds. I don't feel worse since April 2016, but better in some ways and different in others. I don't know if I should see a neurologist. I am currently on Mepron, Tindamax, Doxycycline, and Ceftin. Coartem was prescribed, but it's on back order. I am having hot flashes many times throughout the day and night. These hot flashes started in early January. I started Cefin 12/22 and Diflucan/Tindamax on 12/12. I've been on Mepron and Doxy for over a year. I am very moody. Maybe it's menopause? I'm 44. In my appointment with my LLMD in September, he said I didn't have MS. But at this last appointment in December he said he would never say that. When I first saw him in 2009 he said I did not have MS. He has tried to get me to take LDN. This is all so frustrating. My brain doesn't feel sharp and I don't feel normal. I do lots of absent minded things.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32558
   Posted 1/17/2018 2:12 PM (GMT -6)   
That’s a long time to be in treatment - even if it’s on and off.

Have you thought about changing to another LLMD for a new set of eyes?

That’s where I’m at now - not as long in the game as you but plateaued with current Dr and am not feeling confident with him anymore (because of a few reasons)

I wouldn’t accept an MS diagnosis - you tested positive for Lyme and Babesia - twice - and one fairly recent.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 110
   Posted 1/17/2018 2:28 PM (GMT -6)   
Thanks for the response, Girlie. I should clarify. I was diagnosed and treated in 2009-2012 and then I just stopped treatment because I was diagnosed with Melanoma, so I freaked out a bit. But then I had a bunch of neurological problems in April 2016, so I went back to my LLMD. I am frustrated that he keeps planting the MS seed in my head. I texted my husband after my September appointment because I was so excited to finally have him say, "You definitely don't have MS because the bands you have on both of your Lyme tests cause neurological lyme." So I reminded him of that. So I've been steadily treated since April 2016. I think he's trying to "CYA"... because he has been problems with the state about treating for Lyme. I will just keep on. But I know he's going to be bothered by these recent MRIs.
DX w/ Lyme, Babs, Bart in Sept '09. On IV abx Nov '09 until Mar '09. Orals for a few months and I felt great so I just stopped. In Apr '16, things suddenly went awry... my ability to walk was affected, double-vision, it hurt to touch my bare belly with my bare fingers, but no problem touching through fabric. Started three oral abx in Apr 2016. New problems in Dec 2016. Back to 4 abx Dec '16.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32558
   Posted 1/17/2018 3:27 PM (GMT -6)   
That would bother me, too if I kept hearing 'MS' from my LL Dr..


Keep us posted - let us know how he responds when you discuss the mri findings with him.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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