Thursday, December 31, 2009

Weeks 9 & 10: Dr J Protocol

This was the first time that I was to have 2 weeks without antibiotics!!

For the first 3-4 days I still had die-off symptoms (sweats, hyperactivity, mood swings, and a lot of fatigue), from the IV treatments and the 2 preceding days of Flagyl. Slowly I started to feel more "normal," though I still had some trouble falling asleep and eczema remaining on my face.

My shoulder pain, which had been significantly worse on Levaquin- particularly at night, gradually improved. By Thursday I began to enjoy very good energy, less shoulder pain. For the first time since becoming ill, I had NO noise intolerance, NO sweats, and a good appetite. I no longer suffered hand or foot pain, my skin was better, and I had stable moods.

By Friday on the 1st week off antibiotics I began feeling great and was able to enjoy full days and felt more and more like my old self, (everyone was noticing this).

On the days off antibioitcs I infused one liter of Lactated Ringers solution. To this, I added magnesium sulphate, methyl B12, B complex, and vitamin C (all on alternate days). In addition I did glutathione intravenous "pushes", 2-3 times/week (1500 mg at a time).

Week 10 was my second week off antibiotics. I continued to feel well but by the end of this week, (by around day 12-14), I experienced more fatigue with more emotional ups and downs. This was better than my first time off antibiotics, when symptoms developed by day 6. Dr J explained that feeling better and then worse,off antibiotics, was not a relapse, but rather it was a herxheimer reaction to the body's immune system kicking in and attacking organisms- similar to what antibiotics do. For this reason, one can expect to feel worse as the immune system becomes more active and more "targeted."

Tuesday, December 29, 2009

Week 8: Dr J Protocol

This week was a repeat of last (IV Levaquin/Zith with Mepron/Art on M,W, and F) in addition, Flagyl was added on last 2 days (Th, F).

I upped the Lamictal in anticipation of more die-off (25 mg am and 100 mg bed time with Lyrica still 125 mg at night). Despite this, the regimen made me feel revved up and I was unable to sleep at night (up till 2 am). In addition fatigue worsened, as did dizziness and nausea. The intravenous Azithromycin made me feel as if could sleep all day. I lacked ambition, had no patience with people, and felt uninspired and progressively down and depressed (like I used to all last year i.e. I felt like a failure, jealous of others, felt ugly with no ambition, or direction. In fact I wanted to quit the IV protocol.

Mid week (Wednesday) I still a lot of nausea, dizziness, moodiness.

Thursday I added Flagyl, which caused sweats (worse in the night) and more nausea. Joint pain also seemed worse. Mood became more depressed (felt ugly, hated the protocol, felt discouraged).

I also had significant weight gain (8 pounds in 3 wks!) on the Lyrica. On the weekend I changed the 125 mg Lyrica to 200 mg Neurontin and started to use Motrin for my shoulder and hand pain. I write this now on week 14- so please understand that it gets better- but the protocol is tough.

Sunday, December 13, 2009

Week 7: Dr J Protocol

This was the first time I had ever been on Levaquin (see below).

Almost immediately when the Levaquin (IV) was started, I developed hand, arm, and foot pain and some nausea. I also felt briefly emotional.

I had some hallucinatory experiences within hours ie.stairways were moving and I felt as if I was walking on marshmallows. I was at times paranoid of strangers and had the feeling of watching myself (dissociation). That night, I had strange, unpleasant dreams (eating animals while they were alive/jelly-fish-frogs that slipped between my fingers…). When I woke up the next morning I was hyper, with OCD/ADD but I got a lot of things done! I cleaned bedroom drawers, kitchen drawers, my daughter’s bookshelves, washed toothbrushes, kitchen appliances, sorted a lot of mail, sorted a lot of bills. I literally could not stop myself from doing/cleaning. I later heard that other people have felt this way with Bartonella die-off.

My shoulder pain seemed better the first few days, in fact, everything seemed better and enjoyed myself. I seemed to have boundless (somewhat manic) energy. I felt like dancing and was energized but hard to stay focused. I can so understand why manic bipolars do not want to medicate themselves. I enjoyed this altogether too much. It was hard to sleep. So I didn’t.

As this week progressed I developed increasing shoulder pain. It felt as though someone had "shot" me in my arm. Aside from this, I felt good but by Saturday evening I started to crash and felt tired, nauseated and moody.

Sunday it was hard to wake up- felt very out of it. I was fussy and my arm pain was horrible. I was depressed and unable to fall asleep easily. I had to increase Neurontin (up to 400 mg) and increased my Lamictal (150 mg)- which helped.