1. How well did it work for you.

2. How long did it take to get results.

3. Any allergic reactions

4. What was the dosage

5. Other antibotics taken concurrently

6. How uncomfortble were the shots (this seems to be an area of concern)

I can't compare to other regimens because my treatment started with Bicillin. However, all of my symptoms are improved, most are markedly improved.

It took about three months to really begin to feel better. Before then I felt mostly worse, especially in the 24 hours following the shot.

I've not had any allergic reaction but I always take an antihistamine beforehand and keep an Epi-Pen nearby for half an hour after.

I took Zithromax 500 mg. concurrently and the Bicillin dosage is 1.2 MU.

The first few shots were moderately uncomfortable. Now I would say the discomfort is mild. My allergy shots hurt more.

David

The pharmacy and I had to go through a lot of obstacles in order to get the drug.

It was finally delivered this week.

I know am waiting to hear from my doc on how to administer it.

The local doc will have nothing to do with it.

I am so low functioning. I am concerned about being alone while I take the drug.

But, it is encouraging to hear that you improved after 3 months.

1. It's been really good so far. My symptoms have not gone away, but they have lessened greatly. Very good results for the short time I have been on them. Bicillin has helped my neuro-symptoms greatly.

2. Results have been slow but steady and best of all lasting.

3. No allergic reactions at all.

4. I started out at 1.2 twice a week. Now I'm at 1.2 three times a week.

5. I'm also taking 600mg Zithromax and 400mg Plaquenil.

6. The shots were very uncomfortable for the first month. Now my bum is more comfortable with the shot and is only sore for a brief time.

I have discussed this with an infusion nurse in my doctors office and her opinion of it was that it was a barbaric form of medication. Her description of the type of needle necessary to administer it was not pleasant. As Bb is a spirochete and the other most infamous spirochete of note Ie syphilis natably responds to penicillin, I have often wondered why not Bb.

As for the shots, penicillin can also be given by IV infusion and with pronebicid can be made long lasting. I do not see why the same could not be done with bicillin and thus eleminate the need for painful injections. An IV PICC, while inconvenient and uncomfortable at times is much to be preferred to these massive and painful injections I should think.

Since it seems that two antibiotics at the same time appear to be more efficacious against our little microscopic friends I wonder if some other drug given with IV bicillin or its equivalent would not be another effective option and much less costly.

Right now I am off of Rocephin as I got very sick with the Cleocin (colitis) and may have gall bladder problems. I then got sick from the medicine for the colitis. So I may have to quit the Rocephin as well. Some four thousand dollars of drugs are sitting in my living room right now that I may not be able to take. Plus I cannot take any antibiotics now until I recover from the last horrific ordeal.

I am sorry to hear that you haven't found the right combination yet.

I know how discouraging having lyme can be...not only is a tough condition to treat...but we have to fight the medical field to be treated.

I hope you have a good doc who is understanding and is trying to do his or her best.

Thanks for the post and please keep us posted on how you are doing.

Lately, I have stayed reclined unless I get up to go to the bathroom or get something to eat.

It seems to be working for me right now. I just needed a break.

The plan is to try and do something in the evenings after I have had all 3 meals.

It seems if I tried to do something before I fed myself 3 meals, I didn't have enough strength to eat or fix the meals.

Bicillin CANNOT be give IV. Inadvertent administration by that route has caused deaths. It's about the consitency of heavy cream, not good for the heart on a mechanical basis not to mention the fact that, chemically, it can severly damage blood vessels.

It is a slow-releasing medication that forms a depot in the muscle. It sounds bad but actually isn't if you are adept at ignoring minor discomfort. It hurts much less than the sore tendons I lived with most of of the time, before I got better.

David

1) These shots work great for me.

2) I felt better within 2-3 hours of my first shot and could tell when my body needed another one. I always feel better within hours.

3) No allergic reactions and to be honest never even thought about it.

4) Dosage 1.2 twice a week.

5) Taking Plaquenil, zithromax and at times DMSA with it.

6) The shots are only as painful as the person giving it. I have a friend who was an army medic who gives them the best. He jabs it in quick and massages the area as he is injecting. The whole process may take 20 seconds max.

My worst shots were given at my LLMD's office. The nurse just kind of pushes it in gently and it hurts so much that way. You really have to do it hard and quick.

The shots given properly don't hurt at all.

My LLMD says that for some people Bicillin really works wonders. It sure has for me.

I saw my doctor yesterday and he is very pleased with how I'm doing. He commented that he has not used Bicillin before and and is impressed (it's less commonly used here on the west coast). He plans to begin using it more in his practice. He increased my dosage, slightly to three times a week.

Kam,
I hope you can start on it soon. It would be hard for me to have it and not be using it. Administration is not a big deal but it probably would be better to have someone around the first few times.

If you aren't experienced at injections, it might be easier to start with something else first, such as B12. The reason I say this is that with B112 you have much more room for error. Getting it into a blood vessel is no big deal and the possibility of allergic reaction is practically non-existent. Also, in my experience, B12 is virtually painless. It would just be an easier way to gain experience.

You will need an injector mechanism for the Bicillin. Your pharmacy can get it for you but it requires a prescription. It costs about $7.00.

Thomas,

It's really unfortunate you are having so much trouble finding a workable regimen. if you are actually interested in Bicillin, I suggest you try disregarding the infusion nurse's comments and try one or two. The 1.2 dose has a relatively short, thin needle. Other than the bias against the IM route and the slight possibility of allergic reaction, this stuff is usally well tolerated with few if any side effects.

Good luck, all.

I have foudn Bicillin to be the best antibiotic for me. Its easy to do, no pills to swallow, and its long lasting.

1. It has worked excellent for me

2. results were herxing, very quickly, and the + results took 2-3 months to shw trhough the herxing, then, nothing but great results.

3. no allergic reactions

4. Dosage 1.2 MU Bicllin LA injected IM three times per week. I also did 2.4 MU LA (one in each but cheek) for a few months twice weekly.

5. Yes, i have taken Bicillin at some point mixed with Biaxin, Flagyl, Zithromax & Flagyl, IV Claforan and Flagyl, IV Zithromax, Hyperbaric Oxygen, and currently Rocephin shots IM combined with Bicillin plus starting tetracycline + Flagyl for h.pylori, so together thats Bicillin, FLagyl, Rocephin and tetracycline...for 2 weeks, then back to just Im Rocephin and IM Bicillin.

6. The shots dont bother me at all and never have. I do them myself and have no probelems. Load the Bicillin syringe in the tubes, make sure its been out of the fridge for 5 minutes , inject, and put a bandaid on it. make sure you inject it in you upper outer butt/back area.

When I first began Biciilin I herxed long and hard, 3-4 months worth.

In Israel they have used Lidocaine as as the diluent, as we do with Rocephin here. Interstingly, it did not lower the penicillin levels in the blood and resulted in significantly less discomfort for patents.

Here we use the pre-mixed tubex. I think the 1.2 MU Bicllin dcould be injected into a 5 ml. syringe to which a couple of ml of lidocaine could be added. I'm going to ask my doc.

This could help reduce the cumulative sorenes Bicillin can cause when taken repeatedly.

David

1: Pediatr Infect Dis J. 1998 Oct;17(10):890-3. Related Articles, Links

Lidocaine as a diluent for administration of benzathine penicillin G.

Amir J, Ginat S, Cohen YH, Marcus TE, Keller N, Varsano I.

Department of Pediatrics C, Schneider Children's Medical Center of Israel, Petah Tikva. [email protected]

OBJECTIVE: Benzathine penicillin G is recommended for secondary prophylaxis of rheumatic fever. Its main disadvantage is local pain and discomfort associated with the injection. Lidocaine as a diluent may reduce this discomfort. We compared the administration of benzathine penicillin G with two diluents; sterile water and lidocaine hydrochloride 1% for penicillin concentrations and pain of injection. DESIGN: In a randomized double blind, crossover trial, 18 children ages 11 to 19 years who required prophylactic treatment for rheumatic fever were randomly divided into two groups. One received an injection of benzathine penicillin G diluted with 3.2 ml of sterile water, followed 1 month later by an injection of benzathine penicillin G diluted in lidocaine hydrochloride 1%; the second group received the same regimen in the reverse order. Serum penicillin concentrations and subjective pain sensation were determined after each injection. RESULTS: Peak serum penicillin concentrations at 24 h after injection were similar for both preparations (0.100 microg/ml for water, 0.102 microg/ml for lidocaine), as were the other serum values measured throughout the month. After 28 days detectable concentrations (> or =0.020 microg/ml) were found in 44 and 291% of the subjects, respectively (P = 0.4). Urine penicillin concentrations on Day 28 were 1.81 +/- 0.25 and 2.31 +/- 0.25 microg/ml, respectively. The pain score immediately after the injection was significantly lower with the lidocaine than with the sterile water dilution. CONCLUSION: Use of lidocaine hydrochloride as a diluent for benzathine penicillin G does not change the penicillin concentration in body fluids and significantly reduces the pain of injection. We suggest the use of lidocaine hydrochloride 1% as a diluent for benzathine penicillin G.

1. the bicillin arrived very hot. It had been in the car for about an hour while the pharmacy made the deliveries.

2. I opened it up and found it was ready to go, but the needle is very large...ouch.

3. I have heard that I can administer it myself but I agree.

It would be nice to have someone who knows what they are doing teach me and to be available in case of any problems.

4. I have asked the local doc for b12 shots and got no where. I still need a good primary doc.

How hot was the Bicillin when it arrived? it is pretty perishable when pre-mixed. YOu amy need to take this up with the pharmacy. Also, do you have an injector? They are a little bit tricky to figure out the first time?

Maybe someone on this board has a cooperative PCP in your area. Are you in teh LA area? B12 is so benign it is available without prescription in Canada. It can be ordered on-line.

If your local doc is unwilling to work with your llmd would you be able to get home health at least to instruct you on the injections? I'm not sure what you're insurance situation is or if you are home bound. But I do know in Kentucky (I was an office manager for an agency) home health will also do private pay that doesn't require insurance or the patient to be homebound.

I would HIGHLY recommend you have hands on instruction from someone with the first couple of injections. There are major nerves in the gluteal region. There is also the chance of anaphylactic reaction, especially with the first few injections. Do you have an epi-pen available? Some kits come with the pen and antihistamine.

I agree with David, you need to check on the length of time and how warm those injections can get. I also would call a different pharmacy than the one you got it from just to double check.

Possibly you could find a new pcp that would allow you to come into the office with your prescription for instruction?

Is this readily covered by insurance?

I've heard great things from a friend who is taking bicillin--the best he's felt in 6 years and after trying everything from IV to all the other combinations.

From other responses it looks as though dosage is variable. As for me, I take 2.4 million units once a week. It has been ordered for 10 weks but may extend beyond that depending on how well my stomach can resume orals and how effective the bicillin is. At this point I am on bicillin only but would like to be able to add flagyl or another antibiotic.

I had no problem with insurance coverage, I go to the out patient dept once a week. All insurances vary but you could have your doc call them to see. I teied to get verification of coverage but thy needed the diagnosis and procedure codes and I had no idea what they were.

Good luck to you

Is it possible to get more than a week's worth at a time? I am supposed to be out of the country for three weeks and had been doing only orals.

But I am willing to try bicillin, provided I can do this treatment while I am away from a regular pharmacy and doctor.

Thanks.

Bicillin is only sold in boxes of ten doses. So that should be at least three weeks for most people. Keeping it cold while travelling could be a challenge.

In most of the world, this medicine is sold as a powder that is mixed with water prior to injection. In Israel, they have mixed it with 1% Lidocaine instead. It is reported that pain was reduced significantly by this method. In powder form, it doesn't have to be kept cold. It also costs about one tenth as much. Of course, that would have to be ordered from an overseas pharmacy or purchased one of those trips.

I think that most of the discomfort is due to the fact that it is a fairly large vlome, thick, and slow-dissolving. Therefore, numbing of the skin would probably not be that helpful other than, perhaps, reducing the anxiety some experience.

I called home health care this am and received a different story.

I am assuming it is because the budget for CA was finally passed.

They will be sending me a form to fill out and then get to my doc and back to them.

My hope is that I will have home health care finally and that they will give me the shots.

I also heard from my LLMD. My hope is that he will be sending a note for an electric scooter and some other forms that I have been waiting for.

I still need a good PCP that will work with my LLMD.

I sure hope the bicillin helps. I figure it will take about 2 weeks for the processing of the home health nurse.

The question as to whether or not the bicillin is any good because it was hot when I received it and I have not refrigerated it has not been answered.

I am still making inquiries along with trying to find a PCP and a ride to the PCP.

I will need to travel a hour or so to the nearest town.

It must be kept refrigeratrd, NOT FROZEN.

Probably, you can just pretend that you have been taking it and get a refill by the time the home health people are ready to help you.

You also need to get an injector mechanism as I wouldn't count on home health having one. This could easily lead to another delay. Your pharmacy can get it for you but may require a separate prescription.

I find it interesting that the one antibiotic that seemed to really help me with the disease was augmentin, a penicillin derivative. I cannot help but wonder since I have a PICC line in place in any case, why not IV penicillin, in a form not as think as Bicillin plus another antibiotic thrown in.

Bicillin CR is a mixture of Procaine Penicillin and Benzathine Penicillin. It is a mixture of short acting and long acting forms of Penicillin. It is not the form of Bicillin that Lyme sufferers have found to be helpful.

Bicillin LA is Benzathine Penicillin only. It is slowly converted to a usable form of Pencillin and thus slowly absorbed. It is probably this characteristic of being long-acting that contributes to its effectiveness.

Your LLMD is correct in wanting you to have the Bicillin LA. I started out on one 1.2 Mu shot per week and worked up to three 1.2 shots per week. 2.4 MU once a week might be enough. While it's fewer shots, they are twice as large by volume.

You ask if ten will be enough. I don't think anyone can answer that question. It's FAR less expensive on the world market, about three dollars a dose. You cannot get it from Canada, however.

Hope this helps.

The pharmacy replaced it and gave me 5 ready to go injections in the box this time letting me know that it indeed needed to be refrigerated.

This is so confusing. My LLMD suggests I have a neighbor or friend give me the shots.

The local primary doc refuses to give me the shots because of liability.

The good news is that my neighbor, age 71, is a nurse from Peru and has agreed to give me the shots.

What a way to get to know your neighbor!

I have found Wal-Mart's pricing to be out of date on things they don't fill regularly. CostCo is reliable. With some insurance you can submit for re-imbursement under major medical, even if they won't cover it on the prescription plan. You may want to investigate that possibility. Good luck.

I had a home healthcare company nurse come in and administer them. My stupid insurance will cover the nurse without a problem, but i found out today that the bicillin is not covered!!

I think that the shots themselves are going to be like $30 per shot, is that 'usual'?

If i decide to go out of the health care company to get them - David or anyone do you know where i can get them cheaper? Also any tricks on making them not hurt?

the nurses have done a great job, but the thought of my hubby jabbing me with a needle is a little scary!!!

If you give it a few months, I think you will be impressed with this stuff. I continue to improve gradually but steadily.

This is a WWII vintage drug and it's Mexican/European market price is about $2.25 per dose. It's about @1.25 in India. The price her in the U.S. is criminal.

Question, can you pay for it and submit for reimbursement through major medical? I can and have gotten reimbursed at 80%.

This is a COMMONLY USED medicine in developing countries and in southern Europe. You can get it by mail-order from several on-line European pharmacies. It's presented differently, a vial of powder and a vial of sterile water, which you mix. The good news is it doesn't require refrigeration.

My experience is that they hurt less and less as you continue taking them. Usually, i take care of business and forget all about it. It seems to me that massaging the area actually causes additional inflamation. I'm fairly lean and use a 1.5 inch needle. One word of caution, the medicine tends to clog needles and my experience is that this happens about 50% of the time with a 20 gauge. Starting really slow helps. Today, an 18 gauge clogged on me! This is unusual. So, I usually just stick to using 18s. They look like nails (thick) but don't actually hurt more. Just don't look at them.

This isn't brain surgery and your husband can do this just fine. He needs to be sure to aspirate in order to be sure the end of the needle isn't in a blood vessel and I recommend having an Epi-Pen handy, just in case.

As far as I can tell from looking at my insurance I can not get it covered - the reason I got is that bicillin is not a 'cure' for lyme disease and therefore will not be covered - same reason i was turned down after 4 weeks of rocephin.

I'm really angry about all of this. Any more hints on the places i can order from out of the states? Reputable? I figure i'll have the home health nurses come in again and show my husband where to do the shot and then he can do it from then on once we get the med.

thanks for any help - i was told today that all the brain/eye problems i'm having are due to the lyme and coinfections and nothing else will be able to help them other than treating lyme + so I don't see how insurance can get away with denying treatment.

I am by no means knowledgeable about all the different drugs available, but happened to have IV Sulbactam/Ampicillin prescribed by my surgeon when I was hospitalized with an infected gallbladder.

This is a form of IV penicillin.

You DO NOT want this to treat Lyme. Trust me.

I have had some very bad neuro herxes, some that lasted as long as two months, and I can endure alot. But the herx from IV Sulbactam/Ampicillin was the mother of all herxes....the herx from H---.

Within six hours after starting, I had a severe headache (think spinal headache), and had lost the ability to sleep. I was on Morphine injections, and it did nothing for either of these symptoms. I had also lost my sense of balance. Completely.

Within 24 hours, I had been reduced to being able to do nothing but lie curled into a fetal position on my bed with a pillow over my head to try to ward off light and noise. I could not speak, I could not swallow, and if the nurse dropped a pen on the tile floor, the sound felt like a physical shock wave coursing through my body and causing me to dry heave.

If you are still considering persuing IV penicillin after this story, let me also add that this must be administered 4 times a day.

My LLMD is aware of my experience with this drug. I have had some very dramatic herxes to IV Roecphin, but they were tame in comparison.

I started Bicillin LA injections this week, and my LLMD is convinced this treatment will be very effective based on my experience with IV Sulbactam/Ampicillin, but in a much gentler way. After just one injection of 1.2, I'm herxing already.

I sometimes feel kind of "off," maybe a little dizzy, quiet, sore,about a day after a shot. It started right away and is still episodic.

thanks for the info!!!
betsy

Just had my first shot day before yesterday . Too early to tell but I guess I am feeling better already . At least I am trying all the stuff.

2. How long did it take to get results.

Too early to say.

3. Any allergic reactions
None at all

4. What was the dosage

2.4 mU. Plan to take one shot/week --same strength.

5. Other antibotics taken concurrently

1000 mg/day Biaxin, 500 mg/day Levaquin

6. How uncomfortble were the shots (this seems to be an area of concern)

Was just a little sore but was able to jog and lift weights 10 hours after the shots. So, not a problem.

--Gary

It didn't start till nearly 24 hours after the injection, and has been mild to some herxes I've had on other meds (see other reply, above! ), but it followed my classic pattern of a neuro herx once it began: increasing pain and stiffness, esp in the head and neck, difficulty keeping my train of thought, severe anxiety, irritablity, and light and sound sensitivity. Lots of stabbing pains, esp in the temples. Loss of balance.

Basically, it is extremely hard for me to be anywhere where there is movement, light, or noise. Not a good place to be when you're the mother of five!!

Just took my second injection, and hoping things don't get too intense.

As far as other meds:
My LLMD is concerned about my herxing too bad, and is starting me slow. I'm supposed to work up to adding 600 mg Zithromax in a couple of weeks, then Levaquin in three more weeks, then after another month, Mepron.

I'm just getting back on abx after a six month break.

My regimen had continued to be three 1.2 MU shots per week plus 500 mg Biaxin twice a day. there was quite a bit of herxing a couple of weeks ago but that has passed. lately there have been days when nothing hurts! Also, go figure, over the last several months I quit snoring. I have now gone a year without a respiratory infection (I used to get bronchitis5-6 times each year) and I have no symptoms of asthma, which the ducks tried to get me to accept I had and told me I was in denial.

We have got to figure out a way to have a cruise for all of us who have battled this condition and won. :-)

It is good to hear that you are still going in a positive direction.

A lady drove me out of town an hour or so away Tuesday. The doc there had her head LVN show me how to give myself a shot.

All went well except I couldn't see what I was doing.

I did take the meds out of the ice chest and warm them up before injecting.

It is time to give myself my first shot at home. I have been putting it off all day.

I am going to try and look in the bathroom mirror to see what I am doing.

I was very stiff and sore the next day after having the shot. I don't know if it was from the shot or from being out and about.

A friend had also taken me to the grocery store that night and the electric cart was in use. So, I stood for a few minutes while trying to get food. My friend put things away for me and carried the groceries in the house. I was not doing very well.

Well, I guess it is time to go to the frig and get the drug and needle out so it can warm up.

I gave myself the shot tonight. I have got to have a different mindset with this.

I know it will get easier with time.

I was thinking I will think that I am shooting a dart at the spirochetes to help me with the shots.

I also have difficulty seeing if I have hit a blood vessel. I was OK tonight. There wasn't any blood in the tube when I pulled the needle out.

I didn't know if it was because I had over done it the day before or if it was because of the bicillin.

I haven't over done it this time. I just feel like a heavier fully loaded Mac Truck has run me over.

I do have aches in the joints which I usually don't have unless I over do it.

This is tough to do..especially since the local docs are saying this is Chronic Fatigue Syndrome and are refusing treatment for lyme.

Anyone else have updates who are on bicillin?

I know we are all at different levels of ability.

I am bedridden for the most part. I am fine if I am reclining and not moving.

I still have the high pitch sound in my left ear when I am lying down..can't turn that off.

Just seen your poll, good idea.

The first 2 months I was on bicillan with rifampin and biaxin, herxed, sweats etc.
Then bicillan on its own for the last 4 1/2months, I improved alot but lately I have bad herxes, so must be a good thing.

I have had no allergic reactions.

One thing Im not sure about though. Dr B says to take the bicillan out of the fridge 1hr before injecting, is this correct. Remember my last post asking about relapsing on bicillan, has it been out of the fridge too long?
I see Wild Condor only takes it out 5 minutes before injection.