I cannot believe that it has been so long since my last blog. Sorry guys. I have received many emails asking me how I am doing. Like all Lymies still in treatment I've had my ups and downs but I am happy to report that I am continuing to steadily improve and doing very well.
What does that mean exactly? Well, I am once again a functional, loving, human being. I look forward to the day when I wake up, well at least most days. Except for the days when yeast has flared or I'm herxing. Yes, I still herx but not as intensely, not for as long, and during my drug "holidays" I am way more functional and the length of holidays is gradually becoming longer.
I am officially out of bed. No, I am not back to work, and no, I am not running marathons or going full speed like my old self- but I don't want to return to that over-doing, obsessed with accomplishment, overextended care taker that I once was. Hopefully I will hold on to what Lyme has thus far taught me. Take care of myself. I have officially retired my superwoman cape and I'm not interested in competing with the world. Let others have their glory, me,I am happy to make breakfast for my 11-year old, cook a good dinner, and literally smell the ornamental cabbage, (about the only plant that survived our first frost!)
Here's what I'm doing for treatment currently. Every 3 weeks I take Mycobutin, Bactrim DS, and Omnicef, on M,W, and F. I add Flagyl, for the 2 last days, consecutively. Then I go 2 weeks until I repeat this. At first I had a hard time with this regimen, perhaps because I started it after my longest ever (3 1/2 week) drug holiday, and had just had an air flight. Air travel is always difficult for me. I think going forward I will never do a treatment right after air travel. I developed a lot of Limbic seizures and experienced my first ever "absence seizure." What does that mean? I had an aura, or warning that something wasn't right (a "creepy" feeling in my body), followed by numbness of the face and then a feeling that I was down a tunnel and not really in me. As it progressed my daughter reported that I was just staring into space for about 4 to 5 minutes. It sounds strange and I'm sorry for the details, but I want others to know about this sort of thing and how weird it feels. Any way, it was a difficult thing and I was entirely emotionally drained most of the next day. That was many weeks ago and I have since had okay treatment weeks- some increased wrist pain, foot pain, loss of appetite, fatigue, not feeling like being around people and noise intolerance.
I have had more struggles with yeast, which has been a major downer. Only changing probiotics and using the Pleomorphic (German Homeopathics) could touch it. Yes, you can find these on the internet (there are several sites, here's one contact, 866-505-7501- you can shop prices). I have alternated Pef with Pleo Alb or Pleo Ex (a combination of lower doses of each). I use suppositories, and as they are not cheap, often break them apart.
My other worst symptom is a bone infection in my inner wrist (distal ulna). Yes, it is not in the joint but in the bone, as is typical with Bartonella. I have not bothered to MRI it (insurance squabble not worth it)- but I had a similar problem in my shoulder and MRI of this showed "bone marrow edema." Of course it was reported as "normal." Then I learned that Bartonella infects not only the periosteum (outer lining of the bone), but the bone marrow as well. The only oral Bart drug that can enter bone (Dr J assured me it will get it), is Levaquin. So I am building up to do some Levaquin- probably 2 cycles from now.
More later- thanks for being patient blog readers. Next blog I'll share with you my comments to the IOM (Institute of Medicine) meeting this week in D.C. Be well and never give up, please!