After 6 months of no progress on oral my LLMD has recommended IV. It's going to cost MUCH more than I can afford. Is it worth it?
I take multiple meds everyday to control my neuropathy so I can work. I still work 40 hours a week. I just alternate full days with half days.
Without the meds I am numb to my elbows and mid thigh. My feet and hands are on fire and I have SEVERE muscle cramps in my calves. Right sided head pain with numbness in the right side of my face.
I take Nortriptyline and Gabapentin every day to control these symptoms. On my meds they are managable, but still there.
Am I realistic to think IV might get me to a point where I can stop meds??
Posted by finallylyme (Member # 33807) on :
Oh and... My pain has increased in the last 6 weeks. Both muscle and joint pain.
I have been sick for at least 5 years already.
Posted by Lymetoo (Member # 743) on :
It might. I've never been sold on Rocephin. If you DO get the IV, be sure you are treated with cystbusters or you will relapse once you are off of it.
Have you been treated for coinfections? And you have an excellent doctor?
Posted by marypart (Member # 27012) on :
Do you have any insurance at all? There are different ways to get the meds and supplies and to handle the dressing changes to keep your costs down.
And Lymetoo is right-- are you on the right combos of orals? Is your doctor an LLMD and is he or she treating co-infections?
Posted by finallylyme (Member # 33807) on :
I do have insurance. That limits me to a LLMD that takes it. He came highly recommended, but I was ready to quit. My neuro symptoms increased some with my pain. I'm very confused.
With insurance 28 days of rocephin will run about $2000.
Posted by Lymetoo (Member # 743) on :
How many months will your insurance pay for? That is another consideration.
Posted by sammy (Member # 13952) on :
Contact Infuserve, out of pocket cost for Rocephin and supplies is way less than $2,000 (less than $1000) per month. That is without home nursing care.
If you go through your insurance and use a home infusion co, see if you qualify for their financial assistance program. That might help cut the cost of your copay.
Be very careful though, make sure to get your insurance co to give you a prior auth in writing. Get a copy to keep yourself. Make sure that the IV rocephin will be covered and is being paid for weekly. Don't let the charges build up. You will be responsible if your Ins co decides that they no longer want to pay.
It would be impossible for us to predict how you might respond to the IV antibiotics. For me, the IV's helped stop the progression of my neuro symptoms.
Posted by TF (Member # 14183) on :
I second Lymetoo. If you go on IV, be sure your doctor will also prescribe flagyl or another cyst buster along with the IV.
Insist on it. You don't want to waste your money on IV, and it could be a waste if you don't take flagyl or equivalent with the IV.
Posted by nonna05 (Member # 33557) on :
what are other cyst busters?//
I've seen Ketek a couple of times recently on site,.. But not on protocols I've read and not to many other mentions here..Is this new ammo//???
Posted by faithful777 (Member # 22872) on :
Flagyl, two weeks on and two weeks off with the rocephin.
Posted by finallylyme (Member # 33807) on :
I'm allergic to Flagyl. I've tried it twice. I break out in an insanely itchy rash from head to toe, even while taking benedryl.
What are some other cyst busters?
Posted by jarjar (Member # 8847) on :
Your symptoms sound like serious bart. Have you tried a lot of oral bart treatments yet?
Posted by finallylyme (Member # 33807) on :
My coinfections all tested negetive...
Posted by Kramberry (Member # 34032) on :
Test are not reliable especially when you are sick for a long time.
Your symptoms scream bartonella.
Try the bart meds first like rifampin
Posted by TF (Member # 14183) on :
Besides flagyl (metronidazole), tindamax (tinidazole) will also kill lyme in the cyst form.
"Bb can change into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, the cyst can revert into the spirochete form. The conventional antibiotics used for Lyme, such as the penicillins, cephalosporins, etc do not kill the cystic form of Bb, yet there is laboratory evidence that metronidazole will kill it. Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of Flagyl, this class of medication should not be used in these two- and three-drug regimens. Some clinicians favor tinidazole as this may be equally effective but result in fewer side effects. However, this has yet to be documented." (page 15)
Since both of these meds are in the same family (the "azole" family), you could possibly have the same side effect with tindamax.
You might want to do a "search" of old threads that talk about "cyst" and you may get additional options.
Posted by kidsgotlyme (Member # 23691) on :
I would only do it if I could be on IV's for more than 28 days. This is my personal opinion.
I believe that you should probably do IV's if possible. My daughter's neuropathy has improved on IV's. She still has to take neurontin, but it's much better.
Posted by TF (Member # 14183) on :
I agree that you must be on IV for a lot more than 28 days.
And, be prepared to go to IM (shots in the hip) or oral meds after the IV. Generally, that is the progression rather than just no more meds after IV.
I'm getting this advice from the Burrascano Lyme Treatment Guidelines. Here is a quote for you:
"PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:
1) Adults and children: I.V. therapy until clearly improved, with a 6 week minimum. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails.
2) Pregnancy: IV then oral therapy as above.
LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:
1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed." (page 20)
Eventually, you will be rid of your diseases and can stop meds completely. I finished my treatment nearly 7 years ago. That can be you also. But, you have to do whatever it takes to get there. Don't stop until you are symptom-free.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by kidsgotlyme: I would only do it if I could be on IV's for more than 28 days. This is my personal opinion.
- That's why I was asking about his/her insurance. No point in doing it for one month. It would probably take 6 mo or more.
Get treated for coinfections first. You're bound to have one or more.
Posted by Neil M Martin (Member # 2357) on :
IV antibiotics helped me. I had been on IVIG for two years, paid fully by my HMO for presumed Guillain Barre. After 2 years going nowhere on IG I began IV Rocephin followed by Claforan, Zithromax and Flagyl.
Two years later I was able to make progress on oral antibiotics only.
Once I started IV antibiotics, the HMO's IG was discontinued. That saved them a bundle. But they refused to pay for IV antibiotics for Lyme. I filed a reimbursement claim, which resulted in a settlement.
Posted by cht girl (Member # 26170) on :
Hi finallylyme,
I have had an excellent response since starting IV therapy in June 2011. I have been able to keep my costs for IV therapy to under $500 per month (see my post on 12/29 or you can search under my member name for other posts which discusses how I saved $$). I currently infuse only 4 days per week, 4 doses per week, but if I infused 7 days per week would only cost me $20 a day for one dose of IV Azithromyocin and a day of IV supplies (weekly dressing change kit, saline, heparin, etc...) and I don't use Infuserve, the price of their drugs are reasonable, but when I contacted the infusion service I was using locally in my hometown, they quoted me the same price per dose for the IV azithromyocin and I actually pay less for supplies through them... additionally, I save the $50 per week over night mail charge with using Infuserve. I simply call my infusion service, told them my insurance co. might stop paying for my IV meds/supplies at some time, and they sent me a quote for the $10 per dose price, etcc.... I signed it, then, when insurance denied after 4 months, that is what I knew I had to pay, only $400 to $700 per month for IV azithromyocin and all supplies. I also got an order from my LLMD to have myself and husband trained to do weekly dressing change....
Good luck, you may be surprised what your local infusion pharmacy will take if you have to pay out of pocket... they must still be making $$ as I have been paying out of pocket since Sep 11...
Posted by finallylyme (Member # 33807) on :
Thank you everyone for some great recommendations. I am currently working on getting my PICC placed locally as I don't want to drive 3.5 hours to my LLMD. My insurance approved 56 doses Rocephin, but after my deductable and copay it may be cheaper to cover it on my own. I'm glad to have all the options in front of me!
Posted by katiebobatie (Member # 28753) on :
it's sure worth it to me!
i tried 1/1/2 years of orals with no luck... and my neurologicals problems slowly progressed over that year and a half.
after starting IV, i am experiencing herxing like none other, and when i stop my anti-biotics, i actually feel better than i used to.
i totally believe that the IV is killing the bacteria.
my mom and husband both noticed too that my speech is getting better. they say my voice isn't as shakey.
i really believe i HAVE to have iv treatment if i ever want a normal life again.
i can't imagine going back to orals... it would take away all my hope!