I have been a member of Lymenet for awhile now. I usually do not post. However, I am having a real tough time and could use some encouraging words right now.
I have Lyme and so does my boyfriend. Our LLMD had changed his regimen of meds. He was on Biaxin 2x's a day 1000 mg each dose. The Biaxin was not agreeing with his belly. The LLMD has now put him on Bicillin shots. He had the first shot last Saturday. He is suppose to get the next shot today. We went to the Pharmacy last night to pick up the shot and to our surprise they are apparently on back order from the manufactuer!!! No one called us from the pharmacy to let us know. I am at a loss here and don't know what to do???
Has anyone ran into this problem? If so, what did you do? Is there an alternative?? Please help!
Thanks,
Angela
Posts: 16 | From Long Island, NY, Nassau | Registered: Jun 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Other have communicate with the manufacturer. It is my understanding that they are holding some supplies for people with emergencies and that, in their book, Lyme is an emergency. I think they request the pharmacist inform them of the situation and they ship it out pretty quickly. Others know more. David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Thanks for the prompt response. The pharmacist was not very helpful last night. Can you tell me who the manufacturer is? I will try to contact them myself!!
Thanks for the idea!
Posts: 16 | From Long Island, NY, Nassau | Registered: Jun 2005
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posted
My daughter takes Bicillin LA 1.2 units. We ordered it Wednesday and it was in today. Maybe you should check with a new pharmacy.
By the way, my insurance does not cover injectables, but our AAA club has a prescription discount plan which substantially reduces our out of pocket cost.
Posts: 132 | From Kentucky | Registered: Dec 2004
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Thank you also for your response. I tried 3 pharmacies last night. They all said the same. We left very disappointed and discouraged. I don't know what to do at this point. .
Anyone know how to get in touch with the manufacturer?
Posts: 16 | From Long Island, NY, Nassau | Registered: Jun 2005
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posted
This has been happening for a while now. It doesn't make any sense either. It sounds like they are trying to drive up the prices through the law of supply and demand. Could be because of the increased use of it with lyme patients? That's my guess anyways. Here's an older thread that has some more info on it. Good luck.
My local clinic can't even get the LA. Called my LLMD in Missouri and they are having trouble getting it, so he just said to go with the CR.
bug
-------------------- Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom Posts: 343 | From Northcentral Iowa | Registered: May 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
My LLMD says that now even the manufacturer is saying they don't have it. It used to be you could get it prioritized for Lyme, but I don't think that is working now. There may be too many Lyme patients using it for them to keep up.
My son has been doing Ok getting it for months, but suddenly everybody's supply has dried up.
You could try the CR, but it is much less strong, and also has a shorter half life. There was a big controversy where it was mistakenly used for another illness, and none of the patients got well until they used the LA.
I ended up taking David's advice and called the manufacturer directly. After getting the run around; I spoke to a very nice woman. She explained that Kings Pharmaceuticals(sp? I am a terrible speller, sorry) had bought the Bicillin shots from a company called Wyeth. They were making the shot. Since King's had bought the rights to distribute the shot they stopped making it for them. The woman stated King's is in the works to produce it however, it takes time and approval from the FDA, etc.
The GOOD NEWS is(yes, I did say good news and lyme disease in the same sentence)Lyme disease is considered a emergency! So, what they told me to do was contact my pharmacy and have them get in touch with there wholesaler. There wholesaler will get in touch with King's and advise them it is for a Lyme patient and send the shots out ASAP!! Hope this information can be useful to others in the future.
Thanks everyone again for your help in the matter! It really made a differnce!!! Posts: 16 | From Long Island, NY, Nassau | Registered: Jun 2005
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posted
King Pharmaceuticals is the Manufacturer...
Another company has been contrated to make the Bicillan and the contract was up this year... King has been in the process of trying to renew the contract and make up for the lack of Bicillan due to this.
They are saving the Meds for people with Syphillus and Lyme...
They told me that all the Pharacisst has to do is call then and tell them that it is an emergency and they will send it....
That was the news as far as I now from this past Sept....
Posts: 437 | Registered: Sep 2004
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