My last post detailed weeks 9 and 10 of Dr J's protocol. This post is long overdo for a couple of reasons: (1) I've been on the challenging part of the protocol, pulsed IV Tigecycline (Tygacil, 50 mg), and (2) (the best reason of all), I am so much better on my days and weeks off antibiotics that I've been "doing life," and not living through a computer!!! Remember some of the doses mentioned here are high as I am pulsing drugs, M, W, and F.
After nearly 2 years largely "in bed," I am coming back! This protocol is working and I am doing better than ever.
To summarize the last several weeks: a lot of nausea and vomiting on Tigecycline infusion days, with oral Mycobutin (Rifabutin), high dose Artemesinin (1000 mg twice daily, M,W,F), ending with 2 days of Metronidazole (Flagyl) and many herxes, such as joint pains, (mainly at night), persistent, but improving R shoulder pain, oscillating body temperature, and hyper even manic moods coupled with classic OCD, (obsessive compulsive disorder). Fortunately the OCD has improved my (previously nonexistent) sex drive and greatly helped with organizing and house cleaning. The exuberant, almost euphoric feeling of mania is a welcome change to nearly 2 years of moody depression.
On my drug holidays I have been feeling, for the most part, "normal." I am slowly becoming social, feeling more connected, and enjoying my days instead of barely tolerating life and hiding out in dark, quiet corners. I am making breakfasts, driving carpools, shopping at noisy clothing stores with my kids, following recipes and shopping lists, and cooking meals. It's so nice to hear my daughter say "Wow, Mom is back."
I am about to start my 3rd, 2 week cycle of pulsed Tigecycline. Dr J says that my improvements are ahead of schedule, which he attributes to my adding vitamins to intravenous Lactated Ringer solutions, in addition to IV pushes of Glutathione, and detox work (amalgam removal, infrared sauna, salt baths, Chlorella, NAC and EDTA.
The nausea and vomiting from Tigecycline is very tough, but this drug has been a "game changer" for me. My immune system and general health is returning (remember I have had Lyme since age 12 with bone, liver, lung and brain involvement (Limbic Seizures, with spasticity on my left side).
I am now in my 19th week, having completed 2 cycles of Tigecycline. My how time flies in Lyme world!
Monday, January 25, 2010
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."
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.
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.
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.
Saturday, November 28, 2009
Levaquin, Even with Shoulder Tendonitis
My presenting symptom of chronic Lyme was shoulder pain. I spontaneously awoke one morning feeling as if my shoulder had fallen out of its socket. This symptoms has persisted for the past 18 months despite PT, MRI's, orthopedic and rheumatology consults. Levaquin was never used in my Bartonella therapies because of this shoulder problem.
Levaquin is given a bad wrap on many Lyme forums. People are all about worry and fear of its tendon rupture potential. Yes, this is a known (serious) side effect from all Quniolones, (Cipropfloxacin or Levofloxacin). But it has an important place in the treatment of Bartonella.
When Dr J mentioned using Levaquin I was frightened. I want give you the highlights that Dr J recently gave me. His Levaquin talk went something like this: "Bartonella infects bone- particularly the periosteum (outer covering of bone). I suspect that Bart is causing your arm pain, which may be impossible to differentiate from tendonitis. Levaquin is the drug of choice for Bartonella and giving it IV is the only way to get high enough doses to penetrate bone. If you need shoulder reconstruction after your Lyme is in remission we will do it, then and only then. Until that time, no steroids or surgery, and we treat your infection."
He adressed my fear head on. He warned me that my shoulder pain would probably get worse on the Levaquin, temporarily. So my week 7 of his protocol began with intravenous Levaquin and intravenous Azithromycin (in addition to Mepro/ Artemesinin)- all M,W, F.
Levaquin is given a bad wrap on many Lyme forums. People are all about worry and fear of its tendon rupture potential. Yes, this is a known (serious) side effect from all Quniolones, (Cipropfloxacin or Levofloxacin). But it has an important place in the treatment of Bartonella.
When Dr J mentioned using Levaquin I was frightened. I want give you the highlights that Dr J recently gave me. His Levaquin talk went something like this: "Bartonella infects bone- particularly the periosteum (outer covering of bone). I suspect that Bart is causing your arm pain, which may be impossible to differentiate from tendonitis. Levaquin is the drug of choice for Bartonella and giving it IV is the only way to get high enough doses to penetrate bone. If you need shoulder reconstruction after your Lyme is in remission we will do it, then and only then. Until that time, no steroids or surgery, and we treat your infection."
He adressed my fear head on. He warned me that my shoulder pain would probably get worse on the Levaquin, temporarily. So my week 7 of his protocol began with intravenous Levaquin and intravenous Azithromycin (in addition to Mepro/ Artemesinin)- all M,W, F.
Thursday, November 19, 2009
I Am Addicted To My PICC line
Okay, this is maybe for those of you out there who are thinking "I will NEVER do IV therapy." I was one of you. I was certain that I would get better quickly with oral antibiotics and herbs and supplements to detox and nourish my liver. I did acupuncture and inspirational tapes, and restorative yoga. I had conquered Lyme in the past, quite nicely with alternative therapies. I vowed that I would never have a PICC line in my arm.
Well one day, 9 months into oral antibiotics and holistic therapies (for Lyme, Babs and Bart), my best Lymie friend (an internet chick who has helped me navigate this illness more than any doctor/healer before), basically yelled at me, "P, this is not a life! You are living between the hours of 10 am and 2 pm."
She was right. It was that message that made me seek another opinion and get started on IV therapy. Was it hard? Yes. Was it worth it? Yes. Is it working? Yes. Maybe it is working too well.
I am seriously addicted to my IV. I enjoy the fact that when I infuse I can NOT do anything else and after it is done, if I am sleepy, people understand. I enjoyed being treated as a patient, instead of a malingerer, who couldn't seem to get better. I enjoy the sympathetic, kind looks I get from the airport screeners when they ask me to roll down the sock on my arm. They (the airport people) let me bring extra size liquids and always wish me love and good health. We Lymies don't get much of that.
I enjoy doing Lactated Ringer infusions early in the morning. They make me feel better and give me an excuse to sleep in, or if I do it later, an excuse to watch trashy television.
Can I do all of this without my IV? After my IV is out will I still get loving stares and some recognition that what we go through is hard? I don't know. All that I know is that for the first time (for over one year), I can add numbers, follow recipes, shopping lists and write medical blogs. I feel like retuning phone calls, having sex, and eating food. I can tolerate loud laughing (better) and don't get overwhelmed and teary when things go wrong. Keep posted as sooner or later it will be coming out!
Well one day, 9 months into oral antibiotics and holistic therapies (for Lyme, Babs and Bart), my best Lymie friend (an internet chick who has helped me navigate this illness more than any doctor/healer before), basically yelled at me, "P, this is not a life! You are living between the hours of 10 am and 2 pm."
She was right. It was that message that made me seek another opinion and get started on IV therapy. Was it hard? Yes. Was it worth it? Yes. Is it working? Yes. Maybe it is working too well.
I am seriously addicted to my IV. I enjoy the fact that when I infuse I can NOT do anything else and after it is done, if I am sleepy, people understand. I enjoyed being treated as a patient, instead of a malingerer, who couldn't seem to get better. I enjoy the sympathetic, kind looks I get from the airport screeners when they ask me to roll down the sock on my arm. They (the airport people) let me bring extra size liquids and always wish me love and good health. We Lymies don't get much of that.
I enjoy doing Lactated Ringer infusions early in the morning. They make me feel better and give me an excuse to sleep in, or if I do it later, an excuse to watch trashy television.
Can I do all of this without my IV? After my IV is out will I still get loving stares and some recognition that what we go through is hard? I don't know. All that I know is that for the first time (for over one year), I can add numbers, follow recipes, shopping lists and write medical blogs. I feel like retuning phone calls, having sex, and eating food. I can tolerate loud laughing (better) and don't get overwhelmed and teary when things go wrong. Keep posted as sooner or later it will be coming out!
Wednesday, November 18, 2009
Attitude
I recently found this quote and thought it so true of all of us dealing with Lyme.
"The longer I live the more I realize the impact of attitude on life. Attitude is more important than education, than money, than circumstances, than failures than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for the day.
We cannot change our past.
We cannot change the fact that people will act in a certain way. We cannot change the inevitable.
The only thing we can do is play on the one string we have and that is our attitude...
I am convinced that life is 10% what happens to us and 90% how we react to it."
By Charles Swindoll
"The longer I live the more I realize the impact of attitude on life. Attitude is more important than education, than money, than circumstances, than failures than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for the day.
We cannot change our past.
We cannot change the fact that people will act in a certain way. We cannot change the inevitable.
The only thing we can do is play on the one string we have and that is our attitude...
I am convinced that life is 10% what happens to us and 90% how we react to it."
By Charles Swindoll
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