lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Since on rifampin at lowest dose, head, neck stiff almost feels like a stuffed doll, if u can think that, pain to move, sharp pain in eye. Started samento today. Is head neck Bart. Not as much joints, just hip bad. As usual, depersonalization, feeling identity loss, head in bubble of unreality, unfamiliarity. Not looking for aches and pains, but its been a year off antibiotics and want to see if snyone had similar. Cant wait to get to next dose of rifampin, told my husband lock me in the basement. Tomorrows a week on rifampin and wbc low. Hope samento helps all. Taking bloods thurs to see where wbc is so i can go up on rifampin. Opting for old life with new brain.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sounds like it may be die off?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
How did your symptoms change while off treatment. Did you some how hold your own,or do holistic measures????
Anyway when I started rifampin the first time. After a surgery. Way before any of the diagnoses..I felt a sharp grip at base of head and down neck a ways. Almost afraid to move ,then it would pass in half hour or so.
I really thought I had some type of Meningitis, not full blown out ,but something in that family.
Of course ID doctor's blew it off...3 years later when I get a certain plan or treatment ,it happens. Lately feel worse around neck and head.
Rifampin helped me a lot at first , but was not put with other meds or IV's.. Even though my pulmonary doc requested it at Kaiser. They didn't do it. Increased my Rifampin for 6 weeks.
I don't think I would still be so ill or as bad had they done the IV's at that early off stage of this.
Look up Rifampin on internet sites and get a feel.. You have to stick with it. Not start and stop.. It won't keep working. I think that's where I'm at now.. resistant, I hope not. I really pray it will work again, but LLMD had me on it a month then pulled me off.
Still curious how you did off treatment.. Thanks
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Exactly how I have felt since starting treatment almost 3 months ago on Rifampin. My moods are still off. I did have emotional outbursts originally and my head hurt A LOT! It felt like my head could pop off.
Occasionally I get random joint pain, hip, or rib pain that comes and goes. I hear it can take up to 6 months to feel a lot better. Im hoping its sooner than later.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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