SSS Posted April 24, 2012 Report Posted April 24, 2012 Well, I am on my way up to get my first two, that's right, I said TWO, one on each side, because the manufactor stopped making the one dose shot I need. Expressing my concern on getting jabbed with a huge needle on both sides 2x a week, I was told, oh, the glut is large, lots of room, etc. Well, there is not on my 102 pound a$$. Little cranky. Found another source for the one dose shot I need- but have already purchased these 2 shot at a time doses for the next 6 weeks. And, I have to take my 5 year old with me, be brave and smile. I started Tindamax for the first time- thought I was pretty cool, first 2 1/2 days I felt good, until my last dose on Sunday night- got sick. Since then (on my 4 days off) let's just say I've been frustrated, anxiety, poor me and blank Lyme disease. I guess I do this Bicillin/Tinadmax (and LLMD wants me to build 2 week on/ 2 week off schedule for Tindy) for the next 6 months or so--- I'm hoping this gets me over the Lyme part- *sigh* But the way I feel, methinks there is more Bartonella to tend to. Wish me luck, I have a lot of events with my 3 kids the next 2 months, what with school ending, a graduation, one starting weekly therapy. Thanks for letting me whine.
fightingmom Posted April 24, 2012 Report Posted April 24, 2012 Just wanted to wish you luck. I'm just beginning my travels down the lyme road, so I don't have anything helpful to add. I'll keep my fingers crossed for you!!
SSS Posted April 24, 2012 Author Report Posted April 24, 2012 Thanks :-) I survived. My LLMD is only 35 minutes away, and my 5 year old didn't bat an eye, give her a snack, s'all good. The shots themselves didn't hurt nearly as much as I built it up, but left walking like a crab, shoving free ice packs down my pants. Oh God, you gotta laugh.
tpotter Posted April 24, 2012 Report Posted April 24, 2012 Thanks :-) I survived. My LLMD is only 35 minutes away, and my 5 year old didn't bat an eye, give her a snack, s'all good. The shots themselves didn't hurt nearly as much as I built it up, but left walking like a crab, shoving free ice packs down my pants. Oh God, you gotta laugh. DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD.
SSS Posted April 24, 2012 Author Report Posted April 24, 2012 (edited) Thanks :-) I survived. My LLMD is only 35 minutes away, and my 5 year old didn't bat an eye, give her a snack, s'all good. The shots themselves didn't hurt nearly as much as I built it up, but left walking like a crab, shoving free ice packs down my pants. Oh God, you gotta laugh. DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD. **My LLMD orders the shots directly from the manufactor, and were just told last week they are no longer making the 2 ml shot- so I bought a box of 20 1 ml doses, to do each side, for 5 weeks. If I bought a higher dose (say 4 ml) and used 1/2, not sanitary enough even with the change of a needle. I did call around, some places do have stock left of the 2 ml doses, which I plan to buy in the next few weeks, so my next round will be each side 2x a week, at the 2 ml dose. I am assuming doses are based at Dr.'s discretion/weight. Not cheap, either. But I can't/won't do IV, and am under the impression this is the same/very comparable for getting across the blood brain barrier. Edited April 24, 2012 by S & S
tpotter Posted April 24, 2012 Report Posted April 24, 2012 Thanks :-) I survived. My LLMD is only 35 minutes away, and my 5 year old didn't bat an eye, give her a snack, s'all good. The shots themselves didn't hurt nearly as much as I built it up, but left walking like a crab, shoving free ice packs down my pants. Oh God, you gotta laugh. DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD. **My LLMD orders the shots directly from the manufactor, and were just told last week they are no longer making the 2 ml shot- so I bought a box of 20 1 ml doses, to do each side, for 5 weeks. If I bought a higher dose (say 4 ml) and used 1/2, not sanitary enough even with the change of a needle. I did call around, some places do have stock left of the 2 ml doses, which I plan to buy in the next few weeks, so my next round will be each side 2x a week, at the 2 ml dose. I am assuming doses are based at Dr.'s discretion/weight. Not cheap, either. But I can't/won't do IV, and am under the impression this is the same/very comparable for getting across the blood brain barrier. I'm almost positive our's are 2 ml. We got them for quite sometime from our local pharmacist (yes, very expensive,) and then I got one of his 2 insurances to cover it (they should have been covering it all along...I need to find the time to submit to get refunded.) Anyway, now they are being sent directly to the doctor from a pharmacy that works directly with the insurance company.
SSS Posted April 24, 2012 Author Report Posted April 24, 2012 Yeah, strange, right? But our Dr.'s office orders directly from the manufactor, passes it straight to us without mark-up, and when they called because my shipment was late, that is when they were directly told they stopped making 2 ml. The chain pharmacy I use in my town said their wholesaler has about 30 boxes left of 2 ml, 10 each per box. Said if they aren't going to make 2 ml anymore, these will probably go fast. It my sour mood yesterday, I just thought: Here are the Lyme folk getting screwed over again.
fightingmom Posted April 25, 2012 Report Posted April 25, 2012 Just curious, and incase I ever have the need...would you mind sharing the cost of these shots?
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