After getting bit (again) in early June and either being reinfected (or just reactivating) I've have a month and a half of symptoms that seemed to get slightly better with 10 days of Doxy but then it was downhill again. I went to an ID Dr. (please, no lectures about how ID drs. are terrible, etc. - there are no LLMD's in S. FL) and she ordered another test which was positive for active Lyme. She suggested 28 days of IV Rocephin but I said, give me a few days to think about it. I scoured the internet and found Zhang's study from March, which I gave to my ID dr. She spoke with a colleague who'd prescribed Daptomyacin to another Lyme patient and agreed to do it....but with Ceftin as the combo. Unfortunately I had to wait because I had to go out of town for a conference. My symptoms have proceeded to get worse in the meantime. The migraines, joint pain and neck pain have been terrible.
Anyway, I wanted to chronicle what I go through for anyone who is interested. SO I will try to update this everyday with how I do with this treatment.
Got the IV at about 10:30am today. The only thing that I've really noticed is that I was really spacey (moreso than usual - LOL!). I've been sleeping terrible for weeks....many nights waking up with migraines in the middle of the night. I'll check in tomorrow. I'd love to hear if others are trying this or another Dapto combo.
Posted by Rhiagel (Member # 21880) on :
Keep us posted on your progress. Keeping fingers crossed for your speedy recovery.
BTW, did you ask for doxy and cefoperazone as complements? Those along with daptomycin were the 3 that achieved total eradication of borrelia in vitro.
Posted by Lepidopterophile (Member # 46240) on :
Thanks, Rhiagel. Where in FL are? North, Central or South? Yes, I know about the other two drugs. My doctor said that ceftin is in the same family as cefoperazone and she believes that it will work better in vivo. I did ask for the doxy and she only would agree to the two.
Continuation of Day #1 - Not sure if from the meds or just the downward spiral of Lyme symptoms but by evening I was in so my discomfort in my joints, specifically my neck and shoulders. I'm usually quite crackly in my joints but last night was extreme...and my neck was locking and then cracking. I put on a ring to go to dinner and realized how swollen my fingers were. The ring went on but I could get it off when I got home.
Day #2 -This morning it required oil and force to get the ring off of my swollen finger...big indent left. Hands feel very arthritic. Also, when I woke up, I felt as though I ached in every possible part of my body. Went for my treatment and on the drive I noticed that my vision was extremely blurry, like I didn't have my glasses on. The blurriness has continued throughout today. So far no bad headaches.
Posted by Rhiagel (Member # 21880) on :
Central Florida.
Perhaps, you're ID dr is right. Ceftin is much smaller and crosses the BBB, while cefoperazone doesn't. How often are you getting the daptomycin IVs?
Posted by Lepidopterophile (Member # 46240) on :
I'm going everyday.
Continuation of Day #2 - The snap, crackle and pop chorus continues in force. Still spacey. Fairly useless today but not as achey the rest of the day. Took a Tylenol PM to sleep.
Day #3 - Slept like the dead. Felt pretty decent upon arising. Today's treatment was so slow. Took a serious 2 hour nap this afternoon...one of those where you wake up in the middle and think about getting up but your whole body goes into this sort of epileptic seizure when you try to move....anyone know what I'm talking about here? Went back to sleep and feel fairly decent after waking up. My eyes are less blurry today. Think this blurriness was perhaps some die-off??
Posted by Lepidopterophile (Member # 46240) on :
Day #4 - Still doing well without any bad side effects and sleeping through the night. 9 hours last night. No more blurry eyes.
Day #5 - At today's infusuion I met with the nurse practicioner. Keep in mind, this is an ID office and I've seen nothing but negative on this forum about them (and I've had my share of encounters with them as well) BUT this has so far been a great experience. The nurse said to me, "I don't treat CDC guidelines, I treat the patient." I wanted to cry! Then she said, "So we will treat you for two weeks and see how you are doing. If you need more treatment, you will get it." Again, I wanted to cry.
Well, no herxing to speak of so far....in a way I want them as a sign that I'm healing. But maybe things are dying and I'm just doing a good job of detoxing.
Posted by Lepidopterophile (Member # 46240) on :
Day #6 - You get what you ask for. Today I was exhausted upon awakening and went for IV. Yawned through the whole thing. By the time I got home I felt completed exhausted and crashed. In about 1/2 I woke with a horrible headache. I got up to get some medicine and I was shaking from the inside out...took the pill and crashed again. When I woke up a couple of hours later, I felt much better.
Posted by Lepidopterophile (Member # 46240) on :
Day #7 - Energy galore! Other than my normal aching joints which I'm used to dealing with, I had loads of energy. Actually could focus....at least more than usual. Although, some serious short-term memory issues. Worse than usual. I'm thinking that the floater that I've had in my left eye might actually be gone?
Posted by Lepidopterophile (Member # 46240) on :
Day #8 was another great day....but then
Day #9 - I woke up with energy but after my IV, I was so tired and then the inner shaking, dizziness, generally out-of-it feeling started again. That stayed with me most of the day. My left eye, one that's had a "floater" for several years, started feeling like I had something in it and I kept removing discharge out of the corner...almost like conjunctivitis goop. So weird. By evening I was better. While so tired, I didn't sleep well at all.
So I'm realizing a pattern here. Every third day seems to be the "rough" day. Anyone have theories about why that would be?
Posted by lymeonade2015 (Member # 45611) on :
How has treatment progressed since day 9? Thanks,
Posted by dan67 (Member # 20344) on :