I haven't been posting as much lately, mainly because of being pretty busy. I have been blessed with a good recovery and want others to know about it. I realise that we are all different and that what has worked for me is probably not right for everyone.

Some of the new people may not be familiar with me but I've been a member since January 2003. At that point, I had been ill at least twelve years and was not yet diagnosed. I had thirty-six of the thirty-eight symptoms on the symptom checklist.

At any rate, I began treatment shortly thereafter and have had a steady, relapse and complication free recovery. My doctor and I consider my case to be chronic and we don't hava plan for going off of antibiotics but, other than taking them and some suportive measures such as IM magnesium and B12, I'm essentially symptom free.

When I joined Lymenet, my arms and hands were too painful and weak for me to turn a doorknob. Now, part of why I have been so busy is that I'm building a house! Similarly, when I started treatment, a few minutes of physical activity would make me sick enough to go to be the rest of the day, if I was lucky. Lately, I've been putting in 9-10 hour days of construction work. There are many similar contrasts.

Different protocols have worked for different people. However, a year and a half of following members' stories has convinced me that Bicillin LA is one of the most effective treatments for chronic Lyme. My Lyme friendly doc had not used it before (it was my suggestion backed up with abstracts) and he is impressed with my progress. He's discussed it with other people but so far they have all balked because of the injections. I find this hard to understand because the discomfort is trivial compared to the suffering of chronic lyme.

Anyway, this is just information to help people know one of the options. I wish all of you rapid and complete recoveries.

David
 

What is your dosage and how frequently do you do the shots?

What was the course of your recovery? (How far along were you when you started feeling significantly better?)

Did you treat for coinfections?

I agree that the shots are really nothing much, when you work out how to do them. What's a lumpy butt among friends? Cave, congrats on successful grovelling and good luck on the bicillin.

Please post a picture of your house when you're done!
 

DLL
 

I'm so happy for you! Thank you for the post. I've often wondered how you are doing these days. I wasn't sure what I was looking for today when I logged on, but your post is exactly what I needed to see.

I've been on bicillin shots for 8 months with some slow and steady progress (especially initially) but lots of herxing now along the way. Your posts back then really helped me to insist that I wanted bicillin shots.

Cave76, I think we have the same doc. He has always been against bicillin, but every other drug caused me horrible vomiting and sickness. Rocephin IV gave me gallstones. After a year of getting nowhere, I finally wrote a long fax to him presenting my case for bicillin, and he finally agreed to prescribe it. When I consulted with a LLMD in CT a few weeks later, he immediately told me I should be on bicillin.

Anyway, it's the one drug so far that I've been able to tolerate. I do see improvement, although I seem to keep herxing a lot. It's the one drug that has given me hope. My brother-in-law finally had success treating Lyme when he finally switched to bicillin. It took 18 months, but he became well and has stayed that way. I'm trying to stay hopeful.

Thank you David for signing on and giving your update. Your input helped me to get started on this drug, and your input is giving me the hope I need today (herxing pretty badly I think).

Many thanks,

Joanie
 

Thanks for the suggestion! I just started a detox program, and wow do I feel awful! I should have been detoxing a year ago after all those antibiotics! I'll definitely try the tea.

I'm not on biaxin. I was at one time but got sick. The next time I had such a bad reaction that we had to discontinue it. Same thing with zithromax. I vomit nonstop. Can't seem to take the stuff.

Do you feel that the combination of bicillin and biaxin is important?

Thanks so much,

Joanie
 

This is great news. I am starting Bicillin LA 2.4 on Wednesday. I have done 3 rounds of various orals and 2 12-16 week rounds of IV Rocephin. I do well for a few weeks and then start sliding back. My MD decided to switch me to Bicillin & the Mepron that I still take. Like Joanie, I simply cannot tolerate the macrolides so, we'll try this round without.

I have a question about the herx. My profession requires that I be agile and able to conduct long meetings. My nurse says the side effects and herx are relatively minimal and I should be able to work. Did you hex after the first shot? Can you describe what the herx is like?

I was beyond sick on Doxy & Mepron has retired me to the couch more than once. Am hopeful that I can function on some level.

Thanks for your input and your success story.

BC

 

I did herx on the first shot. While it was not incapacitating, it did make me feel dizzy, withdrawn, and achey. Another Lymenet member turned me onto Detox Tea made by Yogi Tea Company located in Eugene. It definitely helps with the herxing.

Generally speaking, as I got better I still tended to herx about twenty-eight hours after the shot. Presumably that is because it is slow releasing and reaches maximum level in about twenty-four hours. An item of good news is taht, being slow releasing, it is less likely to cause an allergic reaction.

A number of men here have have taken 2.4 MU once a week, for the sake of convenience, and it seems to work out OK. You might want to ask that the shot be given half in each butt cheek as it is a large volume.

Good luck with it.

David

[This message has been edited by David95928 (edited 12 July 2004).]
 

Thanks so much for your helpful reply. My nurse did order the Rx in two 1.2 injections. The pharmacy got it wrong. I will get the correct Rx tomorrow. I am female and am considered pretty petite - not much meat back there. So, the 1.2 is about all I can probably handle in each cheek.

I have a BIG meeting exactly 24 hours after my first injection. I am keeping my fingers crossed that the herx doesn't kick in until 28 hours later. I am having someone drive me, just in case.

Again, thanks. Your progress is inspiring. I have been on Rx for 20+ months with slooooow improvement. Am looking forward to even more progress.

Bc
 

how was your diagnosis made? did you ever have a positive lyme test, or were you diagnosed based on symptoms?

thanks
bill
 

thanks for the response.

is Bicillin and Biaxin the first combo of abx that you tried once you found out you had chronic lyme, or did you try others first?

also, did you use a probiotic during treatment?

thanks
bill
 

Before being formally diagnosed, a very kind P.A. at a walk-in clinic started me on Zithromax 500 mg. a day.

My Lyme-friendly doc upped it to 1000 mg a day for a month. At the time of the first appointment with him, I brought up Bicillin and gave him a couple of abstracts to review. The next month we added Bicillin, starting at 1.2 MU once a week. We gradually increased the frequency until I reached three times a week. During this time, I brought up the idea of switching from Zithromax to Biaxin, to which he readily agreed.
He had not used Bicillin before and has been very impressed with the degree and stability of my recovery. I proposed it because I thought it offered me the best chance and I'm indifferent to needles.

Hope this helps.

David
 

[This message has been edited by HaplyCarlessdave (edited 13 July 2004).]
 

Bc