LymeNet Flash: I cant believe this is happening to me

This is topic I cant believe this is happening to me in forum Medical Questions at LymeNet Flash.

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Posted by Nal (Member # 6801) on :

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.

Ive had enough.

Nancy

Posted by liz28 on :

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.

Posted by Nal (Member # 6801) on :

My stomach can't handle the orals right now.

Nancy

Posted by timaca (Member # 6911) on :

Nal~

I am sorry for your troubles. You might refer your doctor to www.columbia-lyme.org There is some good info there about chronic lyme.

It might also be time to find a doctor that believes in you and chronic lyme (easier said than done, I know).

Hugs....Tina

Posted by HEATHERKISS (Member # 6789) on :

Hi Nancy,

What about bicillian shots? They are supposed to be cheap compared to IV.

I'm always reading about people who relapse after IV becuase it was taken away too soon by insurance.

I've never read that about IM biccilian.

I'm not a doctor just trying to help. When the time comes I'm going the bicilian route.

Heather

P.S. Insurance bites!!!!!!!!!

Posted by lymeloco on :

Sorry you have to go through this.
If I didn't have insurance that you don't need a referal, I'd be in the same boat as you.

My p.c.p. does not go along with long-term antibiotics, but then states, that she's not questioning my llmd.

I gave her the option when I first went to her. I said if you feel this disease is too complex for you to deal with, I will understand!

Yes, you are in hell that's the nature of lyme! Things will get better, hang in there!

Posted by snowboarder (Member # 6346) on :

Hello Nancy,

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!

Posted by Nal (Member # 6801) on :

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.

Nancy

Posted by ticktox (Member # 6739) on :

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.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by Nal:
How is it that one can have positive results like I do (from Igenx) and dr's still don't buy it????????????
Nancy

In short...."Ignorance" Have you read this?

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

If the ID ducks don't work out, can you look for a new PCP??

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by Nal (Member # 6801) on :

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!!

Nancy

Posted by troutscout (Member # 3121) on :

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

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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

Posted by janet thomas (Member # 7122) on :

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.