A further update on my 'POIS' condition that I am ever more convinced is caused by a chronic bacterial infection in my case.
I am still being denied any direct diagnostics that could potentially validate my chronic bacterial infection theory, and I am still being told by infectiologists that a chronic bacterial infection would be 'extremely unlikely' or even impossible. Clinical evidence however strongly supports the theory and so far there has not been ONE piece of evidence that would be inconsistent with a bacterial vector as causative agent. I thus continue to rely on research relating to the domains of lyme borreliosis, chronic fatigue syndrome, and chlamydia pneumonia, since the established symptoms and treatments for these cases seem to be most closely related to my situation... except for the POIS aspect of my condition.
As detailed previously I was on a regimen of oral Penicillin for several months that had almost no side effects and improved my condition substantially. However, oral Penicillin has a very short half-time in your body and most of it is excreted rapidly. Thus, very high doses have to be taken several times a day and still the effective serum Penicillin level will be fluctuating wildly. In a previous post I probably described that after my first surgery I was completely symptom free for 48h post-surgery, until the first ejaculation, while not being on any medication. During surgery I did receive Penicillin IV which could be the cause for the temporary remission, I was however denied my requests to test this hypothesis. During my initial foray into combined antibiotic regimens as recommended for lyme borreliosis, I did receive one month of daily ceftriaxon IV, which should be more effective than basic penicillin. It did show some positive effects but no complete remission and the IV treatment was unsustainable long term.
I did however come across two old (1990s) case reports of borreliosis patients that did not respond to prior antibiotic regimens but were successfully treated with long term Penicillin G (intra muscular). Penicillin G (im) is absorbed slowly by your body and thus long term (weeks) sustained (low) serum levels can be achieved. In borreliosis literature it is hypothesized that a sustained (>72h) Penicillin level could be effective against spirochetes (the class of bacteria causing lyme borreliosis). I found further case reports of other patients online, that often had not received a proven diagnosis but instead classified as CFS or lyme borreliosis based on symptoms, who were (more or less successfuly) following long term Penicillin G (im) regimens. I thus set out to test Penicillin G (im) over xmas as a potential long-term treatment.
Even so Penicillin G is the oldest antibiotic, well understood, easy to produce and patent free, there are actually supply issues in several European countries. There are generally two different kinds of packaging, either as a pre-mixed solution including the analgesic Lidocain, which makes the injection less painful, or as a dry powder that has to be mixed with a solvent prior to injection. In Germany Pendysin is the powdered version but currently not available, only the pre-mixed forumlation Tardocillin could be obtained. In Switzerland no Penicillin G (im) formulation is approved for sale and has to be imported. In France it is called Extencillin, I am not sure about format and availablity. In Spain there is Benzetacil as powder and solvent. In the U.S. there is Bicillin-LA as the pre-mixed version with an analgesic, as far as I know it is however prohibitively expensive.
Initially I obtained 6 shots of Tardocillin 1.2M in Germany and received dorso gluteal i.m. injections every second day over xmas. Until the day of the first injection I was still taking oral Penicillin V but the improvement of my condition after the second injection was substantial. The injections themselves were not painful at all, due to the analgesic but the day after an injection I could barely walk due to pain. My general health status was however better than any day during the last five years! I decided to obtain Benzetacil 2.4M from Spain, where 100 packages can be obtained for as low as 180EUR. I had a prescription from another European country and had somebody buy 100 injections locally in Spain and post them in a standard package to another EU country. All-in I paid 300EUR for 100 injections incl shipment. According to Burrascano, Board Member of the International Lyme and Associated Diseases Society, a treatment plan for lyme borreliosis with Penicillin G (im) would consist of 3-4x weekly 1.2M injections. Since every injection is a risk and I determined over xmas that I would not be able to continue i.m. injections every second day long-term, I settled on 2.4M Benzetacil twice a week. The injection is rather painful but the following day I have less pain than after the pre-mixed Tardocillin, which contained an analgesic. This has been confirmed by other patients online. I believe the pain difference the following day to be due to the speed with which the injection has been given. Due to the analgesic contained in Tardocillin the injection is completely painless and was performed within <2min. With Benzetacil the injection takes me more than 6min due to pain, which probably puts less strain on the muscle that has to absorb the injection. I had the first injection performed by my doctor, the second injection I gave myself under doctor supervision. It is not easy but possible, and I have now been performing the ventro gluteal i.m. injection of 2.4M (6-8ml) Penicillin G for 1.5 months myself, without any outside help.
Mid January 2016 I discontinued oral Penicillin V that I had been taking again after I finished the Tardocillin injections. Within two weeks my health worsened substantially, I had severe headaches and all general POIS symptoms. After one ejaculation I developed a 38.4C fever, shivering, like a hard-core flu within minutes. I could not eat, was almost too weak to walk and could not sleep the whole night due to fever, sweating, headaches and shivers/chills. The next day the hard-core flu symptoms receded and I was just left in the usual POIS state. This all changed when the Benzetazil package from Spain arrived. Since beginning of February 2016 I have now been giving myself 2.4M Penicillin G (im) shots twice a week and my health improvement is substantial. No more headaches, no 'foggy head', only minor exhaustion post ejaculation for one day. This has not come about from one day to the next, instead after the first injections some symptoms even worsened, with substantial night sweats and a different kind of headache. Now I however feel to be on a long term track of recovery... whatever it is that is causing my POIS, Lyme Borreliosis or anything else, Penicillin G (im) does counteract it and keeps it in check. I am still far from complete remission, if that can be ever achieved, but >80% improvement in symptoms and well being, continuously, is worth a lot, and it only seems to be getting better. I can start living again...
Even so nobody else on this forum seems to suspect a chronic bacterial infection as the causative POIS agent as I believe it to be in my case, I post my experience here to make it available to anybody who could potentially profit from it. I am extremely grateful for other case reports that I have found on other forums and blogs from others who have been suffering of similar symptoms, with varying 'diagnoses' (CFS, lyme, etc), and the often experimental treatments they described. Without them I would not have come up with this course of treatment, not known where to procure the antibiotics, and not dared to give myself regular i.m. injections. I thus hope that my experience be of help for others.
