littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I've been sick over a year-first very mild symptoms then an avalanche in Dec of last year. I may have been bit in 2004 maybe even earlier then that. I grew up in what is now an endemic area so I really have no clue.
LLMD wants me on IV abx. Can't do it, can't afford it, I am a painter-I can't have a picc line anywhere in me as I use my whole body at work, and I have two small children with me full time. I just can't do it.
I've seen rocephin and bicillin (spell?) shots. LLMD wants a doctor or nurse to give me shots. But I'm in a place where no one believes in Lyme Disease. I'm crazy and it doesn't happen HERE.
I've read people giving themselves the shots, or the spouse giving the shots.
Has anyone done this? I need another option. Apparently I'm not responding to oral abx, because my LLMD keeps pushing IV or shots. I've only been treating for on and off 3 months.
I'm on amoxy now, but only 500mg a day because he is trying to work it up slow since the first time it gave me bad GI symptoms.
Don't know how long it is going to take to work up to 3000mg a day.
I need to get better and I realize that according to Dr. B. if a person has been sick over a year they need IVs, but the evidence on the bicillan shot is that it is almost as effective as an IV.
I would assume a rochepin shot would be pretty good too.
Are there other meds that treat Lyme that can be given in a shot form?
I need to get treating and stay treating. I need to get better.
posted
I was sick over 30 years and did not have iv or bicillin. There are other ways.
Do you have any friends who are nurses? I did take one bicillin shot before I decided against it and had a nurse friend give it to me.
When I took amoxy I took 7500 mg per day with probenecid to keep it in my bloodstream longer. I weighed 123 at the time. I had to take VSL#3 for the gut symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Three months is not very long, and you say it's been "on and off." I didn't see any improvement until about my 5th month of my second round of treatment, and for some people it has taken a lot longer than that--and yet they have ultimately gotten well.
You might also consider whether you could get an indoor desk job of some kind. If you can't do treatment and you get sick enough that you can't work, you would have to stop the current one anyway.
I have only been on orals so far so I don't know about the other options. A lot of people have said they got better on orals only.
I have heard that IV has been the salvation of some people, but has not worked as well for other people, so not being able to do it does not mean you are missing out on the one and only thing certain to cure you.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I agree, three months of treating "off and on" is not a long time at all.
It sounds like IV is not an option for you right now so please make that clear to your doctor.
You can learn to give yourself IM Bicillin LA shots. A nurse or doctor can teach you and administer a couple of the shots until you feel comfortable with the procedure. I gave them to myself for approx 9mo.
If you decide to try the shots, go for the IM Bicillin LA. It is longer acting so you only have to give yourself a shot 2 or 3x per week. IM Rocephin needs to be given daily.
Hugs littlebit. You can do this.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
quote:Originally posted by sammy: [QB] I agree, three months of treating "off and on" is not a long time at all.
I had Lyme for 42 yrs. Treated with orals for 4. Got my life back. Be patient.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I had lyme for 47 years and I only saw minor improvements for the first few years of orals. It takes time for someone who has been infected for a long time.
Have you been tested/treated for co-infections? They could be holding up progress. If you have them (and a lot of chronic lyme patients do), it is very important that they be treated. Tests for some of them are not accurate so seeing someone who can do a clinical diagnosis is important.
I have had considerable improvement over the past few years, especially with babesia treatment and generic rocephin shots. I will be doing IV at some point but that is after 4 years of orals and treating babs and bart and viruses and parasites. Lots of improvements but still a ways to go.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I'm not the inpatient one-my doctor is lol.
I told him repeatedly that I can't do IVs but that's all he keeps bringing up.
I can't get another job-I will have to continue this one no matter what-don't have a choice.
Thanks for the all the advice. I will keep it in mind-or on paper anyway-until my next appt.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would love to see a VOLUNTEER BRIGADE. Retirees, Students, anyone with some time and skill (or desire and aptitude to learn) to help others during times like this.
Are you friendly with any other painters who have time and desire to do some of your work right now?
Signed,
PollyAnna -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I was told if this 4 wk of abx doesn't work, which I'm almost done and feel like crap, that I would have to go to an infectious disease doctor for iv abx. Do they put in a pik line and you go every so often for your dose, or how does this work.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
| IP: Logged |
Remember to Smile
Unregistered
posted
quote:Originally posted by Lymetoo:
I had Lyme for 42 yrs. Treated with orals for 4. Got my life back.[/QB][/QUOTE]
That's what i needed to read today. Thank you. Weak Smile
IP: Logged |
Remember to Smile
Unregistered
posted
quote:Originally posted by Keebler: I would love to see a VOLUNTEER BRIGADE. Retirees, Students, anyone with some time and skill (or desire and aptitude to learn) to help others during times like this.
Dear Keebler, you have a heart of gold and right thinking. We need to propagate Polly Annas.
I have a tough time getting someone to just drive me a few miles so i can save $35 cab fare.
Continuing to seek a Lyme-friendly church...
IP: Logged |
WildCondor
Unregistered
posted
You should just do Bicillin or Rocephin injections (or both) and take the right doses of oral meds. 500 mg Amoxy is a total joke. To protect your Gi try the Bicllin and make sure you take Florastor to protect against c.diff.
Doing your own Bicillin is not a big deal, I did that for years. Just have a nurse show you how to inject.
IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I know the 500 mg is a joke. It's still messing up my stomach-I just can't handle the amoxy like I use to be able to.
I'm ready to have a new LLMD LOL. I will ask about the injections next time be brings up IVs-because I KNOW it will come up.
See the issue with work is we own our own business. It is just my husband and I. If we hired someone else to work with him because I had to stay home we wouldn't make enough money to survive.
At this point and probably always I have no choice but to work. I'm in extreme pain everyday but I just have to push through it or "suck it up and drive on hoooah" that's what the Army would tell me lol.
I'm taking florastor now. And my probiotic. And I'm going to start Buhner's protocol but I can't until after oral surgery to get my wisdom teeth out.
I wish I could afford another LLMD. There's one near me whose rates are cheaper and she seems pretty good but I've called twice about whether or not the Doctor will take my case and no one calls back. I guess I'll annoy them until they do!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[confused]](graemlins/confused.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic