cleocin oral or IV need help new to site

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Date Joined Aug 2010
Total Posts : 61
   Posted 8/13/2010 7:44 AM (GMT -7)   
Hi, my name is marlene. I've had lyme and all co-infections for 14+ yrs. I just had my 12th picc line pulled because I had a clot in it? anyway I've never had a problem with my pics before.
I was on rocephin 2 gr a day. I hit a plateau with it . so the Dr was going to put me on cleocin
but I had ended up having my line pulled the next day. so were trying oral first to see if it haelps any. If it does he'll have me go have another line put in. and give me a higher dose. I am also on a bunch of other stuff mepron artemsini, the list continues. I suppose you all know the diffent combos Drs use so I won't go into that. I ve had lyme induced cadiomyopathy, low thyroid,depression, pain, pain, pain,. migraines,lyme induced encephltis,

kidney problems, uvitisis.On Easter weekend I had a mini stroke and ended up in the hospital for easter week . thank god the easter dinner there was good even if my husband ate it. lol. I will tell you when I was in the hospital they did a spinal tap and it showed lyme in my spinal fluid.they did tell me my stroke was from my lyme don't ask me how they know that ?

the list goes on and on lately I have been so depressed I just can't funtion not that I ever could my biggest symptom was always fatigue and still is. except everytime I get improvement never above 40% 100% being healthy. as soon as I'm off meds I end up flat on my back I have spent most of my 14+ yrs in bed. thank GOD I have dogs there good company. I can't keep weight on . last year something triggered My blood pressue it started being so low I have trouble standing because it drops when I go from standing to sitting to laying down acually I meant that the other way around. so cardiolgist added another pill just what I want another pill. Hasn't done much to improve it though.

Does anyone just want to throw in the towel. I mean when is this ever going away. my husband asked my dr once and he said I have late stage chronic lyme. I'm only going to get to a centain percentage and I will always be on antibiotics . thats discouraging. well I told you a little bit about myself but believe me I could go on and on with other things that I have had happened to me since I got this horriable disease.

I found this website and really liked the way you support and interact with each other. I hope I can make some friends because I haven't had any in years. anyway my question is has anyone done cleocin IV and how did you do on it? I was on 2gr rocephin 1x a dai 7 days a week. I read In Dr B's guidelines yesterday that he will go up to 4grams a day? I'm wondering why if I was at a plateau my Dr didn't just give me a higher dose? anyone with any suggestions.? and maybe I read the guidelines wrong that would be just like me. well thanks for letting me vent. GOD BLESS to all and my prayers are with you.
Marlene shakehead

Forum Moderator

Date Joined Mar 2009
Total Posts : 2155
   Posted 8/13/2010 9:37 AM (GMT -7)   
Please don't throw in the towel. Keep working at it. Have you tried supplements or alternative treatment? My LLMD has me on a number of supplements. Do you detox? I never did but recently started and it really does help. Drink a lot of lemon water, dry brush with epsom salt bath. I've just upped my dosage of magnesium which I have found to help. I'm sure after 14 years you've heard all of this but please stay strong, it's the crux of us lymies.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.

Forum Moderator

Date Joined May 2007
Total Posts : 36052
   Posted 8/13/2010 2:28 PM (GMT -7)   
As Springsjean said - Please don't throw in the towel!!! I believe that those of us with the wonderful dx of chronic late stage LD, have all wanted to throw in the towel, but we manage to keep on fighting!!!

Welcome to our forum!!! I am sooo sorry to hear of your problems, but as you have been able to see -we do our best to have a shoulder to lean on when someone needs one, and to share what has worked for us, as well as having a place to vent, as we need to from time to time.

I didn't have good results with abx, so I am now using acupuncture, Traditional & Modern Chinese Medicine, herbs, and certain supplements to try to get to a place where I do have a little quality to my life. It has been a little over 1 month since I started & I am having some encouraging results! We have another member, Deejavu, who I believe, could be wrong here, but I do believe that she was chronic, late stage as well. She is well again & she did it at home With Dr. J's at-home protocol.

Detoxing, as Springsjean said, is incredibly important. IMO, those with tick-borne illnesses (TBI's) has a body that is incredibly stressed, and so can not detox well enough on it's own. We need to help our bodies as much as we can. I also believe that the tick-borne illnesses are as individual as the person is - each one playing on the weaknesses in each of us. I believe that each persons' cure needs to be actually 'tailored' to each individual.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
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