I've been on orals for 6 months with some improvement but have plateau'd. Mostly neuro/cognitive symptoms - fog, insomnia, tingling hands, mood issues.
It's been suggested I go for IV but that's too disruptive as I am the only breadwinner in my family and I can't take three months out (unless I cease to become able to work, which may happen).
As a next best thing, IM bicillin has been suggested. Has anyone had any experience of this working for cognitive/neuro symptoms?
Thanks v. much!
Tony
Posted by surprise (Member # 34987) on :
Bicillin was very helpful to me for neuro issues-
I did 2x a week for 6 months. Went I went off, I regressed a bit- (word searching, etc.)
I also did them with a cyst buster oral.
Good Luck to you- welcome.
Posted by TF (Member # 14183) on :
Tony, Dr. Burrascano says that these injections are the next best thing to IV, so your doc is right on.
Here is a quote for you in case you have never seen it:
"BENZATHINE PENICILLIN Comparative studies published by Fallon et. al. at Columbia University have shown that parenteral therapy is superior to oral therapy in chronic patients. Options include intramuscular long acting penicillin G (benzathine penicillin, or �Bicillin-LA�) or intravenous antibiotics. For an antibiotic in the penicillin class to be effective, time-killing curves show that significant levels of antibiotic must be sustained for 72 hours. Bicillin LA is a sustained release formulation that meets these criteria.
Published studies in children and adults, combined with over a decade of experience with this therapy by front line, Lyme-treating physicians have established the efficacy, safety and usefulness of this medication. In many patients it is more effective than oral antibiotics for treating Lyme, and compares closely to intravenous therapy in terms of efficacy if the dose is high enough.
It is usually administered three or four times weekly for six to twelve months. It has the advantage of being relatively inexpensive, free of gastrointestinal side effects, unlikely to promote the overgrowth of yeast, and has an excellent safety record spanning many decades.
Finally, an added plus is that family members can be trained to administer this treatment at home." (page 16)
Burrascano recommends IV for those with serious neuro symptoms ("major neurological involvement.") Here is a quote:
"INDICATORS FOR PARENTERAL THERAPY
(The following are guidelines only and are not meant to be absolute. It is based on retrospective study of over 600 patients with late Lyme disease.)
� Illness for greater than one year � Prior immunosuppressive therapy while infected with Bb. � Major neurological involvement � Active synovitis with high sedimentation rate � Elevated protein or cells in the CSF" (page 21)
Hope others chime in who have experienced this med. I have heard that it helps neuro symptoms, and I would give it a try.
I got rid of lyme nearly 8 years ago by taking oral medications only. Since you plateaued on orals, you definitely have to step up to either higher doses and combos of oral meds or go to the IM or IV options.
Even on IM or IV, you have to be on at least a second med. Not just one alone. Here is a quote regarding that:
"LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:
1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed." (page 20)
The concept of and rationale for combination therapy (being on more than one lyme med at a time) is discussed on page 12.
IM Bicillin has been discussed on LymeNet in the past. You can search for these past posts by hitting "search" near the top of the page and then searching on the word "bicillin."
Wish you the best.
Posted by trimom (Member # 25843) on :
Why couldn't you work when doing IV unless you have a physical job.
Posted by ktkdommer (Member # 29020) on :
My 17 year old son is entering his 3rd month of Bicillin. I do the injections every other day. I think it is too soon to say we see big improvements, but maybe little ones.
Have you heard of taking Baluoke so that the bicillin moves further into the small capillaries of the brain with thinner blood? We are trying this.
My son also take Welchol to try and help pull out neurotoxins that may be causing cognitive issues.
He is on a full treatment of orals for Lyme, bart and babesia.
My son had huge gains on IV for 10 months a year ago.
Could you try a port instead of a picc for convenience?
Best wishes,
Posted by tonycardinale (Member # 39717) on :
Thanks everyone, food for thought there. Great to have found this community. TF, the combos make sense, I'd push for an oral alongside - presumably a cyst buster? Trimom, sorry, i meant that being hooked up to a drip is not workable 2-4 hours a day in a doctor's office. I'm not keen on a Picc, that would be a major stressor for me worrying about keeping it dry/clean etc. I'll do IV if IM doesn't work, I guess. ktk, thanks for the tip re Boluoke and Welchol, will look at those too. Haven't looked a port....is it generally safer/less intrusive than a Picc?
Posted by faithful777 (Member # 22872) on :
IV is not 2-4 hrs a day unless you use a bag and pole. It takes 40 minutes to infuse with a syringe and IV pump.
There are other devices that are 30 minutes to infuse and you cans stick them in your pocket. My husband works long days and hooks up late evening.
We did not want any arm restrictions and opted for a port. You can lift weights with one of those if you wanted to.
You usually take orals with IV.
Posted by Haley (Member # 22008) on :
What is the dosage of Bicillin for Lyme? I am on Bicilin, but my doc only gives 2.4 million every 3 weeks. It is not enough.
Also, the paragraph above says that it is not expensive. It is expensive.
Posted by TF (Member # 14183) on :
From page 19 of Burrascano:
"Benzathine penicillin- Surprisingly effective IM alternative to oral therapy. May need to begin at lower doses as strong, prolonged (6 or more week) Herxheimer-like reactions have been observed.
Adults: 1.2 million U- three to four doses weekly.
Adolescents: 1.2 to 3.6 million U weekly.
May be used in pregnancy"
Burrascano says it is "relatively inexpensive." I believe he is comparing it to the cost of IV therapy when he says that.
There have been some posts on how to make your own Bicillin solution from a powder. That evidently cuts down on the cost considerably. Maybe you can do a search and find these old posts.
Posted by surprise (Member # 34987) on :
When my LLMD's office ordered a Bicillin box of shots through the manufactor, no mark up, no insurance applied, it was very expensive.
Ran the next box through my local pharmacy, through my insurance, not expensive.