Hi! My sister has been on antibiotics intermittently over the past 4 1/2 years (PICC line with IV Rocephin for 10 months). Ironically, the worst time was during the PICC period, just because of the life altering committment to "pulsing" 5 days a week for 1 hour a day! However, it's the best she felt physically since this nightmare started. The Cowden Protocol did nothing for her!! And, it's very, very expensive. Maybe it's helped others less sick than my sister, but I truly don't know of anyone raving about that specific treatment. I've watched first hand to see how very hard oral antibiotics have been on her gut, and we've found out how crucial it is to take mega doses of probiotics while she's taking orals. Sadly, she's not improved in 3 years - in fact, she's worse! Her legs basically don't work anymore and it's a battle just to get the energy to get out of bed. I will say, that many of her other Lyme symptoms have improved, like the constant pain, tingling, burning sensations, etc. she was plagued with in the beginning. Those are basically gone except every once in a while her legs will ache enough to keep her from sleeping. I don't know where to go from here. She's back full time on antiobiotics - Biaxcin and Plaquenil - but she still suffers from extreme muscle weakness in her legs and debilitating fatigue.
Sometimes I wonder if we should just start all over with a neurologist and begin treatment for MS! I'm so scare because I'm now questioning whether she really had MS or Lyme? She did have a postive Lyme test from Igenex in 2004. Now I hear rumors that no one gets a negative test from Igenex! I'm so confused and panicky, because I just can't sit by and watch my sister slip away. If any one has any suggestions or advice for treatments that could improve her stamina and muscle weakness, I'm open! At this point exercise isn't an option - she can barely walk down 3 steps without collapsing!
My prayers are with everyone who suffers from this horrible disease! Take care!