Last december 2011, I had an ingenix test come back positive and was told I had Lyme and possible Babesia by a LLMD. I think I've had it for 27 years, and after going downhill in a major way for the past 2 years, was happy to finally get a shred of hope. Was very sick in the fall before diagnosis and treatment, with what I think is neurolyme. I get head vibrations, terrible neck and head pain, numb feet, sore legs, tingling/pain running down arms, brain fog, weakness, fainting. Too may sx to list, but I seem to crash during very stressful times combined with an exposure (mold and/or chemicals so hard to say what does me in).
I've been on Doxy 200 mg per day for 6 weeks now. After 6 weeks of doxy treatment, I crashed again, had some stress with a small chemical exposure but nothing huge to warrant this kind of crash. It is so hard to read the situation for me, is this a major herx from doxy, or worsening lyme/babesia symptoms? I also tried taking oregano oil about 3 weeks ago and was herxing so I stopped after 10 days even though I felt like the herxs were getting smaller, but this crash I am having now is much worse. Prior to taking the oregano oil I was feeling maybe 50%, now I am back to about 10%.
From lurking on the boards I've seen that 200 mg of doxy a day perhaps is not enough for lyme and that mepron is the proper treatment for babesia not doxy, so I don't think I am being treated for babesia.
Any thoughts from experienced people on the board would be much appreciated, I am feeling a bit hopeless right now. It is hard to claw your way out of the pit and be given hope with a diagnosis finally, and then fall right back into the nightmare of pain.
I am wondering if you truly do have a LLMD, beings, like you are seeing, 200 doxy is NOT enough. Especially having it as long as you have.
There are different life stages to the bacteria and needs to be treated with a combination of antibiotics.
I have read somewhere, not sure where...that just doing a low dose of doxy can cause the critters to hide into the tissue more. Sorry can't remember where I read that.
Also you are not being treated for Babesia. Doxy is not the treatment. From I have heard, most true LLMD's treat the co-infections first. Mine was not treated first, but when I was put on treatment I was given Plaquinel. Others I read their docs put them on Mepron.
I would be questioning your doctor, if they are claiming to be a Lyme specialist why the low dose of doxy, why nothing to help kill of the cyst they created around themselves, and why no treatment for Babesia.
Have you considered adding the Salt/C protocol to your treatment plan?
Sometimes docs declare they can treat lyme but they aren't actually lyme specialists. Then again, I'm sure, as in any speciality, there are those more adept than others.
Also, it seems, from the reporting here, that some LLMDs are not stressing detoxing. You can't just take antibiotics and then do nothing about the die off, else you will be feeling lousy most of the time. Since the Oregano oil was helping you might consider taking that again. All the symptoms you describe are not uncommon with Lyme. There are supplements and such to address them. Try doing some research. You might also look into the book I've mentioned here before The Salt/C Plus Protocol for Lyme Infection. This isn't just about salt/C but has some excellent suggestions for detoxing as well.
Ginger...I have been in treatment for lyme for about 6 months after being sick for over a year. Btw LLMD believes I had lyme 35 yrs ago when I was living in Connecticut. That could explain that when I got sick this time, the disease went into full blast really quick. Anyway, here's what I take as for abx daily This may give you an idea. Zithro 1000mg, Rifampin 600mg and Plaquinel 400mg plus supplements. I also was on Mepron the same time, but that made me really sick so I stopped. So after this for 6 months, I'm feeling much better than I was, but there are a few lingering symptoms that still have not budged such as inner tremor, brain fog and concentration. I can live with fatigue and leg twitches, but the tremor is what I can't live with. When there is inner tremor 24/7, it's hard to function. It's like not having a grativity of center. I don't know if anyone can understand what I mean by that, but it un nerves you to the point of exhaustion. Hang in there and push the doc on the level of abx.