And Teri, I completely relate to the bars! Having them in the bathroom is very very helpful!
Posted by sheltielady (Member # 42710) on :
Do you suffer from Neurological Lyme? )
Other doctors think I have ALS..great imitator
Posted by GretaM (Member # 40917) on :
Yes, neuro lyme and bartonella fairly bad.
The lady who lived in my apartment before me had mobility issues and put bars in the bathroom.
Super handy now!
Are you seeing a good LLMD?
How long have you been treating lyme? I'm at 8 months so far.
IV Rocephin is helping quite a bit.
Posted by lyme in Putnam (Member # 11561) on :
Rocephin always got me out of hell.
Posted by norcal (Member # 29829) on :
I have used biciilin. My insurance told me to jump in a lake. Said something like it was an old outdated drug that they were not going to cover. I did injections twice a week I think at $60 a pop. It broke our already broken bank but probably served to improve my health quite a bit. My mobility is better.Do you need help learning to do injections or? Please pm me for any questions.
Posted by Lymedin2010 (Member # 34322) on :
My very popular LLMD states that most people do well on the shots & I can attest to that. The only problem is that like most ABX, it wore off gradually. Many users also report that it only works for a while.
I could actually forget about Lyme for a while when I was on it & it was a blessing.
Posted by sheltielady (Member # 42710) on :
Ummm...what is working for you now? I am all ears on any suggestion .. (:
Posted by surprise (Member # 34987) on :
My insurance did pay a large chunk for Bicillin shots, when the prescription was put through my regular pharmacy.
Hang in there with the shots (you just started?) A 'cyst buster' drug is often added (Tindamax or Flagyl) to really get the Lyme in all forms-
Posted by sheltielady (Member # 42710) on :
Waiting for Lyme tests ....since I am very debilitated my LLND put me on three shots a week. OUCH!
2ND week....using heating pad...better than ice pack
Insurance paid a good chunk (:
Hope to get results by end of month....
Posted by j_liz (Member # 20496) on :
My LLMD said it was what made her well.
My insurance covered the shots for just about 3 yrs. Then they said I could no longer get a script for the box of prefilled shots and would have to pay my LLMD.
My LLMD said that would really jack up the price.I actually stopped getting them before I ran out, because I was had such an improvement and felt I should get off abx.
They were very painful in the beginning and left huge eggs in each hip. These did not go away until months after stopping them.
I have kind of held my ground for the past 3(?) yrs. until I stopped my natural treatments (echinacea/golden seal and Prima Una de Gato aka cat's claw) and all supplements.
I stopped just because I was tired of taking it all and supplements getting caught in my throat. I have recently started all but the e/g.
I am very thankful that my LLMD prescribed the Bicillin LA and that my ins. co. paid for it.
PS I wasn't aware of any herxing, except maybe insomnia (in spite of meds) for that night.
Posted by sheltielady (Member # 42710) on :
How long did it take before you saw any improvement? I am going on second week.
Did you have difficulty talking, and swallowing.
I am like a mouthful of marbles.
My primary doctor booked me an appt with a neuromuscular specialist in Boston. I am hoping he will suggest IV for mylein sheathing.
Posted by j_liz (Member # 20496) on :
I don't really remember how long until I started noticing a real improvement. Sorry.
My voice would go crazy. Sometimes the pitch (I think that's what it's called) would waver and be high. If you heard me on the phone you could think I was crying.
Other times I would go to talk and absolutely nothing would come out.
Other times, it was like I had to force words out. I was told by my chiro that he could tell it took effort. It might be described as "airy" sounding.
My LLMD suspected Lyme was the cause, but was concerned, because it lasted a very long time (not constant, though).
She sent me to a ear, nose, throat dr. and he put the tube down my throat on two visits. He said my vocal cords were spasming, much like the tremors you could see in the rest of my body.
I do have difficulty speaking, I get all tongued tied. My words just stumble over one another. I stutter, stammer, speak a foreign language (the last one is a joke).
It's better than it was before treatment, but still is frustrating and embarrassing.
I had difficulty swallowing from time to time, but nothing serious.
Posted by lyme in Putnam (Member # 11561) on :
My mental state is shot. Restarted them tonite.
Posted by sheltielady (Member # 42710) on :
Yes when I went to my eyes, ear and throat doctor, he told me I needed to change my diet...duh ....I said under my breath.
I rarely drink coffee now, yeast, dairy and gluten free. I treat myself to 2 squares of 86%cocoa bar.Rarely eat red meat .....
Think not that my voice changed due to diet....silly doctor!
Posted by Mathias (Member # 5298) on :
My experience with Bicillin was that it was very good with neuro lyme. My presentation was also ALS like. Hope you have good success with it.
Posted by sheltielady (Member # 42710) on :
Hi! How long did you do the Bicillin before you noticed any improvement.
What was your coinfections?
I hope to get my answers by end of month.
Teri
Posted by we'll win (Member # 11112) on :
Bicillin-La is excellent, comparable to rocephin (which can also be taken IM).
But must be careful not to get in vein? artery? or can be deadly.
Eventually I stopped taking it because seemed I was getting bad batches/or not working anymore.
Hope it helps.
We'll Win
Posted by sheltielady (Member # 42710) on :
Yes my hubby does pin the tail on the donkey .....I patiently wait......ouch. The lidocaine helps (: Did you have any paralysis from infection?
Posted by lyme in Putnam (Member # 11561) on :
How long for positive result if u did?
Posted by sheltielady (Member # 42710) on :
): won't have results until end if month ......I was bitten in July "95"flu like symptoms and it went dormant until Feb 2011 after tramatic event. Have debilitating neuro.
Posted by Life+Lyme (Member # 33568) on :
Sheltielady,
I truly feel like Bicillin is giving me my life back. I can't praise this drug enough. I have tried absolutely every antibiotic and have done IVs for years. Bicillin has been better for me than all of them combined.
I think I had my first window of mental clarity about 1-1.5 months in. My brain before the shots was horrible. I'm in college, but I had the mind of an Alzheimer's patient in their 90's.
The mental clarity came in short windows at first. Gradually, the windows got longer and longer and were more frequent. Now I have my brain functioning most of the time.
I'm not cured by any means, but it has gotten me out of a deep pit. I genuinely thought I was never going to get my brain back, and things looked very bleak. Since getting my brain back, my personality is resurfacing as well as my creativity.
It is shocking to look back and see what kind of person you became at your worst times. I was a shell. There was nothing in me. The derealization and blank frame were incredibly extensive. Although I still have memory issues to some degree, I don't have the thick brain fog. I am more functional.
I've now been on them for almost a year. I don't plan on quitting soon, either.
I hope this is your magic bullet. Pulsing it with Tindamax has been CRAZY good for me.
Best of luck!!
Posted by sheltielady (Member # 42710) on :
Thanks for the update Life+Lyme. Yes, when I get my results, I will let you all know the findings.
Its been two weeks so far..on bicillin shots 3x a week.
"In the light, there is no darkness"
Posted by [email protected] (Member # 40097) on :
I was looking for info y'all might have re:lumps (scar tissue?) on glut. I've been having Claforan shots daily and Bicillin 3x/week for a couple mos. now. I'm concerned about all of this lumpy tissue in the shot zones; wondering if it's normal.
FYI: My husband and I have Lyme; we shoot each other. Our LLMD had us order http://www.calvetsupply.com/category/Antibiotics Penicillin G with Benzathine - 100 cc. is the same as Bicillin. It costs us under $100./mo. for both of us, including needles and syringes.
Posted by TNT (Member # 42349) on :
Can you do bicillin shots subcutaneously? I cringe every time I think about this treatment. And with reading everyone's posts on it, I don't see how it is tolerable. I know I'm a wimp.
I noticed that the injectable penicillin on the above website (calvetsupply.com) was subcutaneous. Is subcut. penicillin injection something you can use for lyme?
Sorry I ask so many questions. My LLMD keeps pushing for IV. I would do something less invasive more readily. I already do B-12 subcutaneous injections and lovenox. These are easier than intramuscular.
Please don't let this question interrupt the discussion.
Posted by surprise (Member # 34987) on :
TNT, I have a very real phobia of blood and needles (since a kid) Blood draws, I can't look, psych myself, warn I might pass out, etc. etc.
My husband did the Bicillin shots for me. LLMD's office trained him. You need someone to do these shots for you. Someone trained.
All this to say, I had them done for solid 6-7 months straight never an issue, no problems.
Posted by TNT (Member # 42349) on :
Thanks, surprise,
Other than pain, I think I would be a less ideal patient for bicillin shots because I have lost at least 20lbs of weight, and now more bony (very) than I used to be.
I mean there just isn't much to stick a needle into down there.
My wife had given me intramuscular B-12 shots in my upper arm-but even that was almost too stressful for me, and was barely finding adequate muscle. Is bicillin similar to getting a B-12 shot?
Posted by surprise (Member # 34987) on :
I've never had a B12 shot, but can tell you I weighed 95-100 pounds soaking wet while doing Bicillin shots, w/ the higher dose (bigger needle)
In the bottom cheek, rotating. Anyway, just thought I'd share- I couldn't do IV, so these were the next best thing for neuro Lyme (with a cyst buster)
Posted by susank (Member # 22150) on :
I weigh about 100 lbs. I inject myself in the VentroGlut muscles. Easier to reach. Supposedly less vessels/nerves there ? (and away from the Sciatic nerve?)
I use 22g 1" needles. Sometimes I barely feel a thing. Sometimes the second cc it starts getting a bit uncomfortable. I don't use Lido, ice or any numbers. I just make sure the B-LA has warmed up a bit.
I don't know why Bicillin cannot go SubQ - it is also one of my 1000 questions about the drug. I guess the bottom line - is no - can't do it SubQ for humans.
IM B-LA is way different than SubQ B12. B-LA much thicker, more to inject and requires longer and bigger gauge needles.
And BTW - I just gave myself a Glutathione ATP shot IM in the thigh - that one def. with Lido - and it still hurt a heck of a lot more than B-LA.
I dread the Glut IM injections more than the B-LA ones. The latter stings like crazy. Bicillin is "just" thicker. Oh, I have had some B12 IM injections (25g 5/8" needle FWIW) hurt more than some B-LA injections.
Really it comes down to the site/spot. Sometimes you hit a bad spot. You'll develop a feel for when you have hit a good or a bad spot. I'll dart in a needle and say "nope" - withdraw, change needles - and try again.
Still.......I wish I could do them less frequently. I have a thread about that somewhere that seems to be of little interest.
P.S. I think I gain a few pounds when on B-LA - just like the cows I guess.....
Posted by j_liz (Member # 20496) on :
I had the lumps, like eggs. They didn't go away until after I stopped the injections. I don't know how long it took for them to finally go away.
Posted by sheltielady (Member # 42710) on :
Did you try ice before injection..as I just learned.....(:
Posted by lyme in Putnam (Member # 11561) on :
I leave it out a half hour before
Posted by Ellen101 (Member # 35432) on :
I did them for several months and unfortunately didn't see much improvement. I only had to pay a 20 dollar copay. I used ice before and after and learned to do them myself in the ventrogluteal area. Much less painful than the glutes.
Posted by sheltielady (Member # 42710) on :
Were you using any other drugs?
Posted by j_liz (Member # 20496) on :
I didn't use any other treatment for Lyme with the Bicillin LA (except Cat's Claw). I was (and still take) scripts for the different things Lyme has caused and take supplements.
Posted by sheltielady (Member # 42710) on :
Oh, I can't wait to get better. I truly believe I have bartonella and mycoplasma. I don't see any improvement by itself....
Posted by lyme in Putnam (Member # 11561) on :
Did my 30 th shot today. Started full strength at 12 th. Started hormones today too. Something will kick in.
Posted by sheltielady (Member # 42710) on :
Hi Putnam Are you taking any other prescription?
Posted by lyme in Putnam (Member # 11561) on :
Zithro and ceftin. The killer is the combo starting menopause. Also supplements much
Posted by Keith2612 (Member # 33790) on :
Teri, I just took shot #29 last night of Bicillin LA.
I'm taking 2ML(1.2MU) twice per week. along with Clarythomycin. They have been miraculous so far for me.
My hips and knees hurt so bad that I could hardly walk before starting the injections. About a month and a half in, I began to notice that the joints were getting much better, and that my muscles were gaining strength again.
I can now walk 2 miles easily, where as before, a half mile was excruciating. The injections to me aren't all that painful, but some are worse than others.
The soreness the next day is usually way worse than the actual injection.
I have noticed that if I walk for about twenty minutes immediately following the injection, it really helps with the soreness.
My biggest problem is the pain from my wallet. So far I have had no luck getting my insurance to cover them.
They are costing me right at $700.00/month out of pocket! That REALLY makes my butt sore!
Anyway, after 4 years of treatment with just about every combination of orals possible, I can honestly say that the bicillin has helped more than anything.
I would suggest trying them for a minimum of at least 3 months to see if they benefit you.
Posted by sheltielady (Member # 42710) on :
Hi Keith.. I am happy that all is working well with you. As it stands with me, I am no longer taking them. My condition is spiralling. Difficult walking even with rollator.
We will see what happens with neuromuscular specialist on Monday. I am over the top with this .
Good luck (:Teri
Posted by susank (Member # 22150) on :
Teri - I don't know your history. You are awaiting Lyme confirmation? You were tested for co-infections?
Any neuro diseases like MS?
Did your doctor test you for Mycoplasma Pneumonia and Chlamydia Pneumonia? (the latter IGG, IGM and IGA).
Lots of Lyme folks test positive on those two pneumoniae - and CPn has been implicated in MS. There is an antibiotic protocol for Cpn - similar to Lyme disease - but lower doses. You might want to read over at www.cpnhelp.org and research Dr Wheldon's antibiotic protocol for Cpn.
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