update on sons condition, still confused

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frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 3/21/2010 10:13 AM (GMT -6)   
hi,

sorry, its been awhile. went back to doc, still won't put son on IV because of mental state, is getting 1 gram Ricophen IV twice week now, is this enough to help? He's still laughing most of the day and still doesn't remember what he has, confusion and mental fog still there, no better after a month on Minocycline and weekly shot of Biciliian. Pysch doc prescribe Abilify and Namenda hoping to get mental state stabilized to start full time IV, been on Abilify for 3 days now, hasn't started Namenda (read bad reviews, don't know if I should put him on it). Has anyone experienced this? My husband and I really want him on IV all the time but doc won't do it until she's comfortable he can mentally understand why he's having it, afraid he'll pull out IV line. Don't really blame her but he doesn't seem to be getting any better.
If anyone has any insight I would truly appreciate it, thanks
Will try and keep you all updated more frequently, maybe someone can be helped by us.
Very stressful and sad.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/21/2010 11:05 AM (GMT -6)   
I am so sorry that you are still going through this. The only other things I can think of that would cause uncontrollable laughing are strokes and ALS. But, he's really young to have either of those. has he been check out thoroughly?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 3/21/2010 1:05 PM (GMT -6)   
yes, had spinal tap, MRI, SPECT scan and complete blood tests, all with off the charts lyme bacteria, even spotted rocky mountain fever. Tested 10 out of 10 on all bands with the first blood test and then had more test from LLMD and found the other bacteria and rocky mountain spotted fever. We're just doing what the doctors say and hopefully he'll begin to get better. Don't know what else to do.
thanks for replying

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/21/2010 1:37 PM (GMT -6)   
frikandfrak said...
hi,

sorry, its been awhile. went back to doc, still won't put son on IV because of mental state, is getting 1 gram Ricophen IV twice week now, is this enough to help? He's still laughing most of the day and still doesn't remember what he has, confusion and mental fog still there, no better after a month on Minocycline and weekly shot of Biciliian. Pysch doc prescribe Abilify and Namenda hoping to get mental state stabilized to start full time IV, been on Abilify for 3 days now, hasn't started Namenda (read bad reviews, don't know if I should put him on it). Has anyone experienced this? My husband and I really want him on IV all the time but doc won't do it until she's comfortable he can mentally understand why he's having it, afraid he'll pull out IV line. Don't really blame her but he doesn't seem to be getting any better.
If anyone has any insight I would truly appreciate it, thanks
Will try and keep you all updated more frequently, maybe someone can be helped by us.
Very stressful and sad.


frikandfrak, could you send me an email so I can respond to you privately? Just click my email icon.

Thanks!

Gary

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/21/2010 1:45 PM (GMT -6)   
He may need to go the natural route for a while. Email GWB, he knows alot about natural supplements/herbs as he was helped and has been feeling better.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/21/2010 11:19 PM (GMT -6)   
At least your doctor is being cautious. and as far as seeing improvement it doesn't happen so fast. my treatment has only been 3times a week of zethromax as far as abx goes. and I get EDTA for 3 hours before even getting the zethro.

I freaked out on pediatric dose of docxy. 50mg 2x a day and really became suicidal. I never crashed so hard in my life.

also how old is your son? when I was younger I had some very crazy times from taking very strong drugs and ended up in psych hospitol. I turned 16 in a psych ward and thinking back I think I had lyme then.

this has got to be hell for a young person.
hep c , lyme
Dad has lyme

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