Before I was diagnosed w/lyme, (took four years) I decided to try herbs and balance my hormones and stop gluten. I have had some improvement.
I couldn't get out of bed for a year and a half now I can drive myself to the grocery store. So I am functioning about 55 to 60 %. I am grateful but its not living life fully.
I am at a point of probably doing IV antibiotics and I am scared to death.
So, could you please share your story w/me. I know everyone is different.
Thanks
Posted by gmb (Member # 23562) on :
I was on IV rocephin for 14 months and IV Doxy for 2 months, along with numerous other oral ABX and Sups.
It is manageable and not difficult at all. Get the booklet called "Infusion for Lymies". Google it and download. good info
Next is keeping a PICC line dry when taking a shower. Go to DryPro.com for a protector.
later
gmb
Posted by Pony (Member # 32559) on :
^^^ very helpful, thank you!
Posted by GretaM (Member # 40917) on :
Lee-i have been on IV Rocephin for a month.
Still early days.
I was scared of it also.
I don't have a PICC.
I have an IV catheter in my arm.
It is placed every week. I infuse the abx myself and the heparin flushes myself at home for four days, then pull the catheter out myself.
The first week my doc was at ILADS, so another doc started the catheter and wasn't very scrupulous with sanitary instructions or supplies. It left me feeling unsure and nervous.
The first step, as I learned, is you need an established trusting relationship with your doc. It will ease the fear significantly.
Now I see my LL every week and have zero anxiety about the IV.
And good news...for fourty minutes this Monday I has brain clarity and memory function!
So in my opinion, IV abx are worth the extra work.
Best of luck Greta
Posted by faithful777 (Member # 22872) on :
I was on IV Rocephin for 4 months and IV Clindamycin for 14 months. My husband was on IV for less than a year. We both did orals with the IV.
Both in remission.
It is scary in the beginning but once you get into a routine and are comfortable with what you need to do, it is easy.
Posted by Leeintn (Member # 25999) on :
Does it make a difference if you have Neuro-lyme?? Because I do. My doc said oral abxs weren't very effective because they don't cross the bbb. He was very honest w/me and told me that IV abxs can help or it possibly can do some damage.
That's when I really become very scared I didn't ask him to elaborate. So, like a lot of situations in life you weigh the pros and cons. I know I can't stay like this. I do know that I don't think I can tolerate getting worse.
I feel like I had to fight w/everything I have just to get where I am today which is far from being normal.
You guys are great !! Thanks for listening and I'm sure I'll have more to come
Posted by Judie (Member # 38323) on :
Here's an article I read recently on LymeMD that talks specifically about bbb and oral versus IV antibiotics. Maybe it'll help.
I am on oral abx also.
Posted by lostlyme (Member # 38561) on :
With iv it is not cost effective lets say $4000. a month or if you find a compounding pharmacy can get that down to $2000. a month
I had did fantastic with oral and supplements that crossed over the BBB. I was at about 30% functioning
My LLMD had said i would have a 60% to 70% of getting better .
Well i have exceeded that and close to 100% better
I have been working 88 to 110 hours a week , prior to that i was unable to do much of anything for 2 years
Posted by faithful777 (Member # 22872) on :
IV cost me less than $400 a month with Clindamycin. On Rocephin it was $200 more than that.
If you find the right compounding pharmacy it doesn't always have to cost that much.
Some do fine with orals but many don't. If you have malabsorption issues, then orals may not work well at all.
If you have neuro lyme, it is better to go IV. Nothing is guaranteed with any modality of treatment as we are all different.
Posted by Leeintn (Member # 25999) on :
Greta...so is mine....how do you treat yours??
lostlyme...what a blessing to be healed...Did you have neuro and which abx did you use??
Thanks Judie
You all are so helpful...I often wonder what people did before internet support groups...suffered in silence I suppose
Posted by map1131 (Member # 2022) on :
lee, have discussion with insurance company before you make your decision. Many insurance companies will only pay for 4 weeks.
My doctor after 4 weeks and no improvement called my insurance and requested 2 more weeks. They said ok 2 weeks and nothing more.
You want to go into this knowing where insurance stands. Because in my experience 6 weeks of IV was a waste of time for me.
I was too ill to fight big giants. Not only that but all my Elisa had come back negative.
The great thing was after being off IV for 2 weeks and I had my 1st appt with LLMD.....my Igm from Igenex was ++++++++++. So it drove my anti-bodies crazy.
Pam
Posted by ladycakes (Member # 12619) on :
Definitely talk with your insurance company, I've always been on at MINIMUM three months of IV. 6 weeks really isn't long enough.
I was scared to go for it, but it's been significantly more effective for me than oral antibiotics (my primary symptoms are joint paint and neuro). Definitely worth doing, and not as bad as you'd think. I did a little blog write-up that covers some of my experience with it here: http://bridgestreet.wordpress.com/2013/11/06/so-youre-getting-a-picc-line/
The very first PICC I had put in sprung a leak and had to be replaced. Since then, I've had no trouble with them at all (i just got my sixth placed yesterday).
As with anything, talk to your doctor about the pros and cons. But for me, it was a total lifesaver, and I think you should really consider it.
Posted by Leeintn (Member # 25999) on :
Thanks map and ladycakes...I wonder if neuro lyme treatment is much different as far as axb
Posted by crazyhavanese (Member # 42617) on :
I had neuro Lyme and was on oral antibiotics for over a year which did not help my symptoms at all. I begged my LLMD to try the IV. I was feeling so sick and was in so much nerve pain.
I had a picc line and herxed like crazy for the first couple of weeks but after 3 weeks my brain fog finally lifted and after 6 months I felt a lot better. I wish I could have been on it longer but it was starting to give me very bad gallbladder pain(sludge) so my LLMD decided to stop. I am glad I did it but wish I could have stayed on it longer and do a cyst buster along with it!
Posted by Life+Lyme (Member # 33568) on :
Leeintn,
I have done virtually every pharmaceutical treatment. I had a port implanted when I first got diagnosed because my symptoms were progressing at such a rapid rate. I was losing the ability to swallow among many other scary things.
First off, let me say that I have absolutely loved my port. It has been an absolute life-saver. I've had it for three years. If I had a picc, I would have had numerous re-insertions and hassles. The port is great for long term use, and if it is de-accessed, you forget it is there. This is huge because I frequently was pulled off IV's from bad labwork.
Also, central lines are great for hospital admissions and surgeries.
My best IV's was probably Vanco. I think it really did save my life. Another good combo was IV Clinda and IV Zith.
I would like to caution you with IV Rocephin... make sure you take Actigall to protect your gallbladder. Rocephin did a whole lot of damage to my body. Some people really do gain a lot of progress with it, but I am still suffering the effects years. later.
Even after I had emergency gallbladder surgery, my bile ducts have been severely impacted.
I will say this, I feel as if IM Bicillin and pulsed Tindamax has done more for me than any IV I had. It is a wonder drug for a lot of people.
Posted by Leeintn (Member # 25999) on :
Life lyme....
All this IV stuff sounds terrifying !! Everybody is so different.
I had my gallbladder removed already but I'm sure the abx affects other organs.
I am gonna ask my doc about the bicillin until I can start the IV Thanks for your help
Posted by crazyhavanese (Member # 42617) on :
Life+Lyme- I agree that IM BIcillin pulsed with Tindamax was by far the best treatment for me. I did it 4 years into my treatment-way after the IV Rocephin After 9 months I felt so much better and continue to without antibiotics for 2 years.
If I had a choice I would do IM Bicillin over IV . The injections are painful but you don't have to live with a port or picc. line.
Leein-Good Luck and make sure you use a cystbuster with whatever you decide.
Posted by faithful777 (Member # 22872) on :
My insurance company would not say one way or the other if they would cover IV. They said put in the claim and we will process it. I just did it and they paid for the IV and my port.
I paid $600 out of pocket for my port but my husband got his when we had hit all the deductibles for the year and paid nothing for his.
Many do fine with Bicillin shots. I bought IV supplies in bulk and save a lot. Infuserve was the best price for IV meds but their supplies to go with what every IV line you have are not always the cheapest. I just shopped around.
Posted by Leeintn (Member # 25999) on :
Hi crazyh, what cystbuster do you recommend??
Posted by Life+Lyme (Member # 33568) on :
Leeintn,
IV's seem really scary at first, but then they are second nature. I was paranoid as crap when I first started, and a couple years later, I was basically doing them in my sleep.
I would definitely recommend Bicillin. I wish I would have tried it earlier. It took about a month to notice a difference, but when I did...it was an amazing contrast. The herxes can be bad, so make sure to detox!
Posted by we'll win (Member # 11112) on :
You're getting a lot of great ideas. But having been on IV rocephin (brand name), IV ceftriaxone (generic), bicillin-LA shots and rocephin/ceftriaxone shots (as well as oral regimens), for me rocephin is still the gold standard.
But the shots of rocephin/ceftriaxone were just about as good as getting these antibiotics through IV.
I agree with other contributors who say that bicillin-LA is a great alternative to rocephin/ceftriaxone. Almost as good. But you have to make sure not to get it into a vein.
If insurance will pay for it, for me, the first choice is IM (shots) of rocephin.
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