So I glad I could be of any help! I'm doing so much better, but it has been a heck of a long journey and quite grinding tbh with you. It took me a long time to get proper dx, and my particular infections have been quite entrenched and tough to root out, this likely has to do with length of illness, severity of illness, plus likely my immune system genetics play a role. The other angle that has made it tricky is my sensitivity with the herxheimer issues (effective meds tend to make me flare and if I'm not careful it can get out of control).
I have gone thru quite a few abx and herbal combos, many have helped a lot, I am a fan of both treatment modalities (and intrigued by others). One important thing (imo) is for the patient to research, see what therapies make sense to them, what approaches interest them and try to examine the potential benefit/risk of any therapeutics. In regards to herbals, I like zhang, buhner, cowden herbal protocols, along with some of the woodlands essence herbal combos, I mixed and matched a lot of those. In terms of abx various things have helped push me along, alinia, azithromycin, malarone, doxy, biaxin, bactrim, ceftin, even some antiparasitics like ivermectin and albendazole were effective, etc etc you get the drift. I've run the gamut! I do believe that when we plateau on one therapeutic combo it is important to improvise and rotate treatments. I think the best docs treating these diseases understand the importance of this strategy, the timeframes of cycle rotations really depends on the patient and their particular case and how symptoms might or might not be resolving. Some patients are able to resolve their infections more easily than others and it can be more straightforward, others can be much more of a puzzle that needs to be figured out often requiring quite a bit of trial and error.
But I still have some residual symptoms (not as strong as before) and am currently just switching from Dr H's dapsone protocol over to the pyrazinamide protocol (this is an old TB drug), so this is a bit more of what you could call new territory sort of treatments and you need a doctor who knows how to manage this stuff. I tend to think it is good to first exhaust the more conventional approaches and then if most things have been exhausted looking into some of this other stuff. I would have rather avoided these dapsone/pyrazinamide therapies but given the stickiness of my infections and how much they've affected my life I have the stomach for the approach (and the risks it can entail). So far these treatments seem very effective for my case, I sense I'm in the close-out stages, but we shall see! I have to say that I've gotten the most improvements with Dr H so I've been quite happy with that. Sometimes it takes finding the right doctor, one we feel comfortable with, one who listens to us, one who we can partner with! Unfortunately access and finances are often a barrier though which is horrendous for the patient community.
I have not taken a quinolone yet as this was a drug class that I was a bit worried about
in terms of side effects. But given potential effectiveness for bartonella, and as time has gone on growing suspicion this is likely my main infection, and the fact that doc thinks it could really help me I may cycle onto it for a brief window. Two things to do if on that med to help hedge against some of the side effects according to doc are take a lot of magnesium supplements and vit c supplement.
Btw I remember reading about
one of those original cases from Lyme, MA. The kid became an emergency doc, and in the article he mentioned he still had some weird ongoing symptoms (but he was high-functioning as I understood it, as you probably would need to be to be able to practice ER medicine!). He didn't seem to think he had an ongoing infection, I on the other hand wouldn't be surprised if there was still pathogen that hadn't been wiped out in the initial abx treatment course causing continuing symptoms.
I think it is great that you are researching, trying to learn more, questioning. I'm glad you are pursuing this angle (lyme/coinfections) but it is also good that you are reading beyond it. It is always good to rule out other things and not put the blinders on one way or the other. Obviously I have my views (bias) on the suspected importance and potential role of these infections in various autoimmune conditions but that doesn't mean one should ignore other possibilities and avenues.
In case you haven't come across his work yet Ed Breitschwerdt is a great authority on bartonella, he has also given some excellent lectures that are worth a listen if you have time but here is a link to an article: /wwwnc.cdc.gov/eid/article/15/12/ad-1512_article
I also think there are several great books out there that can be good resources. Stephen Buhner's Healing Lyme and Dr Horowitz's book as well, he has a 16 point model that looks at the infections but also at various other points that should be examined: /www.amazon.com/How-Can-Get-Better-Resistant/dp/1250070546/ref=pd_sim_14_1?_encoding=UTF8&pd_rd_i=1250070546&pd_rd_r=BY9ZHHFCAV9TF6G9Z7QV&pd_rd_w=6T0VR&pd_rd_wg=FGaza&psc=1&refRid=BY9ZHHFCAV9TF6G9Z7QV
Pamela Weintraub's Cure Unknown is another great resource, a sort of epidemiological history of lyme. Very well-written based on solid journalistic research.
Shoot, I forgot to mention a few other things that really helped. Diet has been huge for me. I eat a plant-based diet, but the most important I think is eating "real" foods (avoiding processed) and cutting out refined sugars from the diet. I also minimize dairy and gluten but am not as maniacal on that as I am with the refined sugars. I think patients should see what works for them in terms of diet, one thing that works for one person might not work for another. I also have taken various supplements, some of the most helpful were LDN (low dose naltrexone), magnesium malate, and employing various detox strategies as well to help control symptoms and herxheimers.
Post Edited (sebreg) : 8/9/2017 2:34:46 PM (GMT-6)