Topic: I cant get IV meds. I don't know what to do now.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
My insurance has denied IV meds. They will not support long term antibiotics through IV.
If I wasnt feeling totally helpless before, I sure as heck do now. I cant take any of the oral meds. IM bicillin nearly killed me. Whats left? Are there any other IM meds that I could try???
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
oh NANCY!!!!
I am so sorry to hear about this. I dont have anything to offer except my sympathy for your on going struggle.
I am wishing you a pain free day and some sort of miracle! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi Nancy!!
Please investigate the Free meds progams. Roche (rocephin) is very generous in cases like yours. There are other companies. The link below is from Treepatrol's help links for new folks.
If you have any questions, feel free to e-mail me. Our daughter was able to take advantage of this program with Roche.
Good luck.....
Healing smiles...lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
One of my problems in the past has been I can not tolerate high doses of meds-not at all!! I never, ever had that problem before I became sick.
When my one LLMD put me on IM bicillin it was 1000 (shoot, forgot the dose??) at 3 shots per week. Isnt it just possible that that was way, way, way too much for me???? I wonder if we could cut the dose way, way down and try again.
I am seeing a differnt LMD tomorrow. He is in the same practice but unfortunately my LLMD retired (see?? If just keeps getting better for me huh?). He actually has Lyme too so he may actually be a better help to me anyway.
He was talking at a support group meeting I went to that many patients are highly sensitive to the "normal" doses of antibiotics and that makes it very tough for them to prescribe things. He did say that they were able to hook up with a compounding pharmacy here who can cut those doses down to where some of us need them to be.
He also says that it's not unusual for a Lyme person to herx on 1/4 of a pill or say like amoxicillin taken every day verses the normal person who can take double that amount and get no effects.
I cant wait to meet with him tomorrow. I feel so down that I feel I have no where to go but up now right?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
WildCondor
Unregistered
posted
I would appeal with your insurance company. Most companies have a needy meds program, or have your LLMD fill out a prescription request form saying you NEED that drug. You can get Roceohin in injectioins too, and with that call Roche about the needy meds programs. Good luck!
Maybe a smaller dose of Bicillin...speaced out more???
IP: Logged |
quote:Originally posted by Nal: One of my problems in the past has been I can not tolerate high doses of meds-not at all!! I never, ever had that problem before I became sick.
Nancy
Nancy, what other antibiotics have you tried? What detoxes have you used while on abx therapy?
Posts: 12 | From U.S | Registered: Feb 2006
| IP: Logged |
posted
There is disagreement over how much Bicillin L-A is needed. Dr. S in SFO has found that one injection of 1.2 mu/week is the MIC (minimum inhibitory concentration), and that anything above that is overkill. For people sensitive to medications, perhaps it is also intolerable.
I believe, though, that Dr. B recommends three shots of 1.2mu/week. Still others seem to prescribe twice weekly.
If you want to try Bicillin again, talk to your new doc about one injection per week. I take it with Artemisinin (100mg tid) and Ketek 400mg bid.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
| IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Nancy, I just wanted to mention this since I just had my memory refreshed. I've been going through old files trying to track my treatments.
Anyway, what I saw was my first run on Bicillin, I was started on 300,000 for a while then 600,000, then 900,000 and eventually up to 1.2 mil/week.
It was either added to or had other meds added to it. None of them at high doses and was do-able for me.
I can't tolerate high doses either and have not had treatment work for many years after a car accident. Looking back at it, now, I see I was given huge doses after that and always had to stop treatment. (I've denied treatment thinking I couldn't do it for a quite a few years.)
I'm about to go another round (and having seen I did improve considerably on the smaller doses) I hope to do it that way again. I can do it and it's possible so can you. Sure worth a shot, no pun intended.
As for Rocephin... the Roche people are very nice. Seriously give them a call. I was able to get the Rocephin easily and fast; working out how to get the picc with medicare was trickier. I'm never tried it as an injection and am curious how that is.
Ok, I'm babbling aren't I? Sorry, I hope you find some way to get this to work.
Oh, wait... one more thing... I just looked back at your original post. They won't support Long term IV, will they support short term? If you had a picc placed...
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Oh, wait... one more thing... I just looked back at your original post. They won't support Long term IV, will they support short term? If you had a picc placed... [/QB][/QUOTE]
Thats a good question. I am waiting to hear back from my primary care dr to find out. I have no idea otherwise. I may have to go back to some of the other meds (zithro, mepron, doxy, rifampin, levaquin and a few others are ones that I have been on in the past along with IM bicillin) and see if I can just tolerate miniscule amounts of the med and go fromt there.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Nal,
I have read several threads about folks getting well on low doses of abx over period of time.
Perhaps you could do this while you wear down insurance co. Might be very helpful to get your germ load down so bicillin and/or IV meds won't give you too strong herx.
Best Wishes, char
Posts: 1230 | From US | Registered: Nov 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I would look into the free medicine option...
Years ago I got rocephin free.... I know you have to buy the supplies though (tubes, heparin, saline etc.)
I would see if your insurance company will go for short term IV care.... because then they would at least pay to have the picc put in...
I already had my picc in when I got the free med so I didnt have to pay for the picc.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I have tried taking Samentto, aloe, slippery elm, b-12, ginger root, magnesium, omega 3's, and several others that do not come to mind right now. Every time I try them, they upset my stomach so much I cant stand them.
Im not willing to try anything new right now either. I need a break. Oh, I also take digestive enzymes, Mastic, etc. Ive quit everything. Im putting up another post on what happened to me today. I am tired and need relief.
Anyone ever try acupuncture and if so, did it help at all?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
JimBoB
Unregistered
posted
To CAVE76:
ARE you talking about single words like I do, or the WHOLE THING in CAPS? Of course I am NOT screaming at you all.
I just figured IF your Lyme brains are not up to par like MY Lyme brain is, then the certain word in a sentence that has the emphasis, being in caps, won't get lost in the sameness of so many posts. I personally have to read SOME posts over and over to get ANYTHING out of them.
WHERE do I FIND this Lymeetiquette you talk about?
Thanks for the info. WILL be a hard habit to break though, IF you really mean ALL words need to be in lower case.
DOES that MEAN that GiGi and BettyG are YELLING at US TOO? They ALSO use caps in ocassional words.
I can understand WHY you had some stomach problems with what you took.
Try whole cats claw. AND be careful with that herb. Even whole. I would NOT use the TOA-free.
ALSO, have you put a bit of pure ginger root on your tongue? I did by accident when I was first making my capsules and bought the Ginger Root powder to help the terrible pains and nausea I had from the Lyme in the beginning, and especially when I started the Tetracycline. My God, I thought my mouth was on fire. I kid you not. It was terrible. SO I use extreme caution in using ANY of the Ginger Root. I don't know of any pepper that would burn any more than Ginger Root does.
I pretty much quit using it. I also quit the tetracycline, and after off of it for about 3 or 4 days, my stomach pains and nausea pretty much all cleared up.
Also, I find it VERY important that I take my herbs about 3/4 of the way through my meal, so they are surrounded by food. And NOT spicey food. I also almost always drink SKIM milk with my meal. IF you are allergic to COW's milk, you could try goat's milk, as most people can tolerate that. The milk helps to settle my stomach also.
I understand NOT wanting or afraid of starting something new, but what I did was start out super SLOW on the herbs, since my stomach was already quite bad. I only took ONE pill a day. for the first week, then TWO a day, the next week, etc., etc..
It WORKED. My stomach didn't get any worse in the beginning, and NOW it is MUCH better. Almost perfect as a matter of fact.
I would try to get off of the abx for awhile for sure and then gradually add in the GOOD herbs. Such as Andrographis, Resveratrol, WHOLE Cat's Claw, Devil's Claw, Acidophilus, Milk Thistle, Effervescent Vitamin C, ONLY; (THAT is a fantastic help in my stomach feeling so much better).
Going SLOW is the key word, here. AND building your system up. Abx tear it down.
I am OFF of Andrographis right now, as I am working on possibly having Babesia also, (Buhner says that about 80% of those with Lyme also have Babesiosis. But the Andrographis IS very important for curing Lyme. So will go back on it when I am done with the Artemisinin that I am on now, along with Red Root Tincture.
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!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[Wink]](wink.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic