Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I thought that things were all getting set up. My LLMD had contacted my primary care dr about getting a groshon line put in place and getting me started on IV antibiotics. Today my PCM calls me and says that he cant do the direct order for the line or for the IV meds and that I have no choice but to go through Infectious Disease specialists up in Denver.
Im so discouraged, upset and so ready to just throw in the towel on everything. I cant believe this. Now I am to go and see these yahoos in Denver and I know they will deny the treatment options. My dr claims that chronic Lyme is too controversial and that even thought my tests may show antibodies, it does not mean I actually have Lyme. This is strictly coming from literature that he was reading-not necessarily his own opinion.
Maybe he's right. Maybe I don't actually have Lyme. Maybe I am just living through pergatory right now and soon Ill be released from it.
posted
Nal, can you get started on another cephalosporin in the meantime? Oral abx aren't as strong as IV, it's true, but these days they come a lot closer than they used to. You don't have to lose hope because of this experience.
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
My stomach can't handle the orals right now.
Another option is doing Zithromax 1 pill a week. It stays in your system at least 1 week...that's what I've been doing on and off.
Linda LD is doing a protocol similar I think. You may want to email her to get specifics. She works full time and can not handle taking abx all the time.
I don't know anything about the Denver ID Docs but the Pediatric ones bite. The most they were willing to do for my daughter is her 3 weeks of abx.
Hope your feeling better soon!
Posts: 738 | From Colorado | Registered: Oct 2004
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I spoke to the receptionist at the ID clinic in Denver yesterday. She said they treat chronic lyme patients all the time. I told her that most dr's feel that 3-6 weeks of meds is adequate and then they quit. She made it sound like they don't necessarily do that there. Yeah ok, we'll see about that.
Ill play their stupid little game and then Ill continue fighting my insurance. How is it that one can have positive results like I do (from Igenx) and dr's still don't buy it???????????? That makes no sense to me at all.
posted
Nancy, I agree with Heather. Bicillin shots may be a more effective treatment than IV rocephin. Unless you can be assured of being able to continue with IV rocephin until your symtom free which could be more than a year, I wouldn't even consider it. So many people relapse after doing IV rocephin. It is expensive and carries with it certain risks. Bicillin has proven effective for many people, is much less expensive and less hastle. You might want to talk to your LLMD about it. Good luck with whatever you do.
Posts: 57 | From CT | Registered: Jan 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
The truth is I really do like my PCM. He tried really, really hard to get all this aproved-its the hospital that has shut the door on this (military facility). Basically right now his hands are tied.
He's been reading up on Lyme from info my LLMD has sent him-he's a little skeptical but does have an open mind about it. Thats more than I can say about a lot of idiot ducks out there!
I will be talking to my llmd about the bicilin shots-thats actually our back up plan.
Its hard enough being sick-its much worse when you have to fight the dr's and insurance as well!!
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Just voicing my opinion....Bicillin.
I was in the Military system 4 years ago.....got 'ducked' alot...until I also met one REALLY good Dr...then nwe left the AF.
BICILLIN BABY!!!!
(Take the stain off of yourself.)
Trout
------------------ Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! Iowa Lyme Disease Assoc. www.ildf.info
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
After 9 months of orals and getting worse I asked my new (as of May) LLMD for bicillin or IV-his choice.
I've been on bicillin (and ketek, 800 mg/day)for a month now. Started at twice a week but that put me in a big herx. So backed off to once a week for now.
Cost is a big consideration too. And ease of use. The shots are actually easy and don't hurt much.
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