I had my first appointment with Dr. H on Monday. All I can say is wow; I am so thankful. I have been on many rounds of IV antibiotics, but between elevated LFT's that hinder my treatment and GI problems, we are looking into other methods.
He said he would like to start me on Bicillin shots. He said that shots are very effective because, unlike IV's or oral's, the antibiotic level stays constant in your body. Also, in terms of GI intolerance, injections skirt around that issue.
My insurance covered two months of IV Vanco, but I just found out that it will NOT cover Bicillin shots. Dr. H said he would have been completely shocked if they didn't, but so it goes.
He says that it is one of his secret weapons and has lots of success with it. Can anyone share there positive/negative experiences? I don't know if I will end up doing it due to financial obstacles, but maybe I could afford 1-2 months.
Otherwise, I think he wants to do all natural (Byron White) so my body may handle it better.
Posted by chastain (Member # 34236) on :
Hi there. I have just started bicillin shots myself. It is too early for me to comment on what it might do to help me, but I can tell you that my neighbor who was terribly ill from lyme treated with rocephin followed by bicillin shots and it made a huge difference with her health. As a matter of fact, she said the bicillin was her 'silver bullet" and helped her tremendously with some of her most stubborn neurological symptoms including persistent seizures and neuralgias.
I am also friends w a retired LLMD who saw enormous progress with many of his sickest patients with bicillin therapy. I wish you the best of luck with yr treatment. Jess.
Posted by Ellen101 (Member # 35432) on :
I have been doing bicillin shots twice aweek for about 6wks now and they have made a huge difference. The constant nerve/muscle pain I had in my hips and legs is practically non existant some days.
I was so nervous about starting them. It took about 2-3wks before I saw a big difference.
Posted by bcb1200 (Member # 25745) on :
I also see Dr. h and have been in Bicillin since Feb. It is a good drug.
Posted by minimonkey (Member # 8693) on :
I think bicillin shots helped me the most of any of the numerous antibiotics I did in nearly 4 years of treatment (I never did IV abx... just orals and the bicillin).
Bicillin/Ketek was what finally turned me around and gave me back a quality of life .. and eventually put my Lyme into almost complete remission for a while (I've relapsed a couple of times, but the relapses were fairly mild compared to the initial battle).
I did bicillin alone for several months, and then my llmd added the Ketek later.
Posted by poppy (Member # 5355) on :
Does this produce a herxheimer reaction? I presume it does.
Posted by fflutterby (Member # 28081) on :
I have been on them for over a year and have seen slow and steady progress. I also see the same doc as you. My brain is so much better, I can multi task again. I do not feel as over whelmed as I did a year ago. I have more energy as well.
Posted by WhitneyS (Member # 25666) on :
I was on Bicllin for about 4 months with no real change at all
Posted by susank (Member # 22150) on :
I assume your insurance company denied Bicillin-LA. I wonder if they would cover Bicillin-CR. I think it is cheaper? Not as much PenG per ml but perhaps of some benefit?
Posted by minimonkey (Member # 8693) on :
Poppy -- I found the bicillin herxes to be pretty mild compared to other abx. (The Ketek was another matter altogether!)
There are a few people who don't respond to bicillin much at all, but it is a wonder drug for a lot of us.
Posted by Melanie Reber (Member # 3707) on :
After many years of orals and IV, my digestive system was trashed so I needed to look into other therapy. I've been off and on Bicillin for a few years now- love the stuff. It has brought me back to a good functioning level a few times. I think it is best used in combination with other meds. And... if you are co-infected you will certainly need other meds too.
Purchasing out of pocket can break the bank very quickly, but there are safe locations to buy it in powdered form at a very affordable price. You will just need to buy all the other items in order to mix it and inject it yourself (steralized water, syringes, needles, caps, etc).
Posted by droid1226 (Member # 34930) on :
Where can I get powdered bicillin?
Posted by Life+Lyme (Member # 33568) on :
Hmm, it sounds like lots of people have seen a great improvement on it. I wonder if I only did 1-2 months if it would be good enough.
I can't figure out why they wouldn't cover it, but they did Vanco! It would be cheaper if they paid for shots than all the port supplies. Insurance companies:/
Posted by sammy (Member # 13952) on :
Remember, Dr. H treated himself with Bicillin LA shots.
Life+Lyme, if your port supplies and Vanco were covered, I wonder if the injectable Bicillin-LA needs to be processed through an infusion pharmacy (like walgreens or infuserve) under your major medical policy? If they have already tried that then try to get them at your local pharmacy. Sometimes you will be surprised when they are covered one way and not the other.
Also, when I did Bicillin, it was only covered in a limited number. I had to get refills every 2wks. Have your pharmacist check to see if there is a quantity limit and maybe you can get some coverage that way. Copay was far cheaper than out of pocket.
You can also check your formulary. Some ins companies require that you get more expensive meds through mail order pharmacies. This may be one of them for you.
Posted by Rockette1 (Member # 38039) on :
Is this good for basic neuro lyme 16 months sick, or only advanced cases?
Posted by lilblue3 (Member # 17881) on :
I have been on Bicillin for a little over a year & it has been a wonder drug for me. It brought me back life.
Posted by racer (Member # 30438) on :
Dear Life+Lyme,
You have probably researched this already, but I thought I'd share the way our (high-deductible Plan) is handling Bicillin LA.
Our insurance is Aetna - and I think (not completely sure, because they have been sending me in circle on this) that for us the Bicillin LA is covered under Medical benefits, but NOT under Pharmacy benefits.
Supposedly, it is filled in their "specialty pharmacy" and billed to Medical, and pre-authorization is not required.
I hope Aetna gets their darn act together bkz my daughter needs the med!
Good luck, racer
Posted by CD57 (Member # 11749) on :
Does Bicillin get into brain?
Posted by susank (Member # 22150) on :
Racer - same here - but different insurance company.
My insurance was "denied" at my local pharamacy.
So I had to pay for it up front and be reimbursed. Of course every time I talked to someone at the insurance company I was told something different.
I was first told that through local pharmacy I would have a low co-pay. Then was told 80/20. Then was told local pharmacy was out of network so its down to 60/40. I was told this after I paid $750 for 10 syringes.
Turns out the B-LA is covered under my medical. And under the special pharmacy plan. My cost for 24 syringes through them - peanuts. For the 2ml.
Had the ins. co. advised me correctly in the beginning I would have ordered from them. I was even told the wrong price from the medical/special pharmacy. Made to believe not that much price difference in local vs special pharmacy. That turned out to be wrong by several hundred dollars.
My refill I did of course through the special pharmacy.
So there are questions to ask in this regard when talking to your insurance company.
Posted by Lymeorsomething (Member # 16359) on :
Personally, I think higher dose Amoxy is almost the equivalent of Bicillin without the cost and aggravation.
Posted by Life+Lyme (Member # 33568) on :
Racer and SusanK, I will have to look into that. I think I will call my infusion company up and ask them.
Lymeorsomething, What kind of dose of Amoxy? I am doing 775mg of Moxatag ER right now. I just don't feel it is as potent as IV's which I have done in the past. Have you had success with that?
CD57, I have heard it is a good drug for persistent neurolyme. Like I said, Dr. H calls it his magic bullet along with IV Vanco. Hopefully I can get on it, and then I can tell you from personal experience.
Posted by Lymeorsomething (Member # 16359) on :
Life+lyme, I don't know too much about the extended-release version of Amoxy (Moxatag) but 775mg seems a bit low.
I know the LymeMD seems to like Amoxy too. He mentions two patients--one did better on Amoxy, the other better on Moxatag. So everyone is different as far as responses go.
Amoxy did not produce a cure for me but kept me quite stable. Of course, Amoxy by itself is not enough....an abx like Flagyl should be used if even in pulsed intervals.
Posted by Life+Lyme (Member # 33568) on :
I thought I would bring this thread back up. I think I'm finally going for the Bicillin!
Where does one get the powdered Bicillin specifically. Is it safe? I don't know how comfortable I feel with getting it from out of the country.
Thanks!
Posted by susank (Member # 22150) on :
Was wondering the same thing. I have just started back on Bicillin-LA. This time I plan on staying on it. I hope.
If it makes me feel better I would want to stay on it forever.
And that might mean using livestock Pen-G Benzathine/Procaine Pen. (like CR?) or else ordering the B-LA powder from overseas.
With the powdered version one has to use thicker needles to inject?
The livestock Pen. might have refrigeration issues? So many years when I would go to feedstores I would walk by their fridges and see all the drugs.
I never bought anything for my horses like that - never needed to.
I at least know the Pen is refrigerated at the feed stores. But how is it shipped to them?
I guess one could order the animal Pen online and request that it be shipped on ice.
I see where some livestock catalogues just ship it regular mail. And that is supposedly OK to use for animals?
I could have sworn I saw somewhere some vet Pen with PenG Benzathine/Procaine Pen where the mix was not 50/50. Rather twice as much PenG (Benzathine)as Procaine. I guess I was wrong?
Did I also read the Procaine Pen is ultimately used/converted?/the same as the Benzathine? Same drug just different release times?
Posted by Sammi (Member # 110) on :
Life+Lyme, many medication manufacturers have patient assistance programs for people who cannot afford the med or whose insurance does not cover it. You may want to look into this.
Check all the ins and outs of your policy. When I did Bicillin, the only way my insurance would cover it was if the injections were given at a doctor's office (it took WEEKS for me to find this out, I thought they would not be covered). I had to drive sixty miles twice a week to get the shots because no other doctor would give them!
I hope you can find a way to get the shots covered.
Posted by we'll win (Member # 11112) on :
Yes, I second and third all the good responses about Bicillin-LA. And yes, the bicillin, as well as all shots other than insulin, are covered under the medical benefits portion of my health insurance. But the shots did have to be shipped to my doctor's office.
For future reference, who knows what is going to happen with the new health insurance law, I am real interested in how to get the powdered bicillin.
Best of luck. Keep Smiling (through all the pain).