posted
I'm on Rosephin IV and doc is saying he will double my dose in a wk. I told him when I first found out what was actually wrong that I wanted to be as aggressive as possible in my treatment. I absolutally love my doctor and truely believe it was a blessing from God that I got him as my primary. He is on the Cape and has dealt with Lymes for over 20 yrs.
I spend about 2 hrs a week in his office , the VNA is at the house once a week to change my dressing for my Pick line, I have a social worker that comes threw because I can't work and poverty scares me. There are periods of days that I wont even drive the car to the store because I start falling asleep with out warning of exhaustion. I vomit every day and am constantly dehydrated, I'm hot then I'm cold then I'm mean and then I'm crying. Also I recently have problems turning my head from side to side.
Doc said now its time to double up on the rocephin ...and I do trust him, but I'm scared. I'm down to 98 lbs from 127. I have all I can do to get my son off and on the bus some days and I literally feel like the cold season just might kill me sometimes. What should I expect from doubling up and when do I say "uncle" about my meds. I really do want to get better and I would rather be extreamly ill all at once then do this time and again as I have read some other people on here have.
Doc said I may relapse, said I have chronic lymes, also said I'm in his top ten of worst cases so to expect to have to take oral antibiotics from time to time and FM from the lymes is permenant.
On a more positive note I have noticed some "reversals" in my health... Wierd ones too. Like my hair growth in strange areas in starting to subside and growth rate is back to what it was although I still lose alot of hair every day from my head. My urinary tract infections have stopped. My yeast prob seems to of cleared up although I had thrush issue a week ago . I'm starting to be able to eat although I throw up but at least I can put the food in my mouth and hold it down for several hours. I'm still dehydrated but I drank a whole container of Gatorade today.
Things seem to be changing but my memory is just pathetic on the rocephin. Getting tired of the doctor routine every single day for one thing or another... I want my life back so so bad. I'm just not used to being afraid when I see my relection. I'm a much smaller version of myself. Doc said with in two years I should be able to work 25-40 hrs a week but that my systems... and I do mean all of them have been permenantly damaged in alot of ways so I wont ever be able to do things the way I used to. Kind of a hard pill to swallow at 33.
Anyways. Who has taken Rocephin in large quantities and what should I expect next.... I'm all set with the surprises , so please be honest so I can better prepair.
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I didn't take Rocephin, but I want to say that my fibromyalgia I had since high school (I'm 47 and was bedridden/housebound with Lyme) is completely gone. All of my symptoms have resolved. It's worth fighting for your complete health.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I assume you see Dr. D. He is experienced with lyme, but many feel he is not up to speed on co-infections. Feel free to PM me if you want to know alternatives.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
I think coley is using DrD. Got to be...Harwich is the Cape )
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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posted
Another possibility is to use an oral antibiotic in conjunction with the rocephin.
Posts: 107 | From new jersey | Registered: Dec 2009
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posted
Thanks for the feed back. I'm actually seeing a Dr.M. He doesnt put himself out there as a "Lyme Specialist" , but he knows his stuff. After readng as much as I have, learning the terminology, the different tests they can run and so on I feel very confident that he knows what needs to be done.
Rosephin doseage is now 1 gram, and will be 2 grams starting on tuesday for one mth. Keep in mind I'm 5'2 and 98 lbs ( was 127 lbs ) .. I dont know that your size matters THAT much but it must have something to do with it... I would think.
Since I wrote the inital post I have had 3 wonderful, energy filled days and I have been able to eat with out vomiting ( gotta love that ) .. Almost like a "vacation" from sickness till Tuesday. Sickness is one thing but self induced sickness is hard to wrap your head around. I hope these next few days pass SLOWLY.
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
STOP CHUGGING THAT GATORADE! That's LOADED with sugar, which is ONE thing you want to AVOID while on the antibiotics to [slowly, unfortuantely] kill off the Lyme. Otherwise, you'll be having G.I.-tract issues and other problems like yeast/ Candida. Not to mention that the blood sugar spikes help spur the B.B. critters along.
You' need to re-hydrate yourself with things like flavored seltzer water & tea... and water. You'll need to really plan your diet & eat like a diabetic. Hi-fiber, high protein & LOW on the sugars. Download a copy of Dr. Burrascano's guidelines ('Advanced Topics in Lyme Disease' (c) 2008 and go over the diet recommends.
You'll be able to have Some fruit after a full meal, say, but your gonna have to get into using sugar substitutes like Stevia (recommended) or Splenda. A bit of honey is O.K. from time to time, too.
Here's to hoping you have many more "wonderful, energy-filled days" ahead (which you will, esp. during the week following every 4-week cycle of treatment) as you recover.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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