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.

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!

Wednesday, November 18, 2009


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

Sunday, November 15, 2009

Lyme Is An Anti-Social Disease

It's amazing what an anti-social disease Lyme is. You not only don't have the energy to go out but you don't feel like being social. It's just too much work and socializing (even small groups) can be overwhelming. For over a year I did not answer the phone, return emails, and avoided saying "Hi" to people.

I recently met a doctor who was studying Lyme and I asked him what we (Lyme patients) were like. He said, "Well Lyme patients seem normal at first, but after about 5 minutes you can see them get quiet, withdrawn and wilt." Sound familiar?

For me if I am at a social event and I start to get like this I just know to get out of there as it is usually a warning that I am overstimulated and within minutes can feel like an emotional and even irrational mess.

Now I must say that I am now soo much better on Lamictal, and having done a lot of Bartonella treatment. But, I can still find myself quieter than usual when socializing. People don't get it. They still have a hard time understanding why you just don't feel like being out in crowds or social gatherings.

Promise to blog more on my IV protocol (weeks 7 and onward) soon. It's hard to believe that I am about midway through Dr J's IV protocol.

I am happy to report that I am having more and more "normal" days and starting to actually look forward to the holidays.

Monday, November 9, 2009

Week 6: Dr J's Protocol

So this was the second time I had a week without antibiotics. It was for the most part, GREAT!!! I don't think I could ever go back to daily medications. I had energy and did things like shop for clothes (first time in a year!), invite people for dinner, and well just woke up happy.

Last time off antibiotics I felt pretty well (except for some persisting shoulder and joint pains) for about 4 days -then sweats, fatigue and noise intolerance set in. This time I made it to 6 days. By the 6th day I was more fatigued, more noise intolerant, and feeling more withdrawn and moody.

The 6th night we had guests over for dinner and I was okay but as the night wore on I could feel myself getting quieter and more withdrawn. I became very noise intolerant and asked people to keep their voices down. Suddenly, I just had to leave the room and started to feel "crazy" and tearful and paranoid (like I used to feel before Dr J and Lamictal).

I had just hit the wall and done too much. Oh well, now onward to a week of pulsed (oral) Mepron and Artemesinin, with IV Levaquin/Zith....

Thursday, November 5, 2009

Female Hormones and Lyme

Lyme and co-infections affect ALL hormones by interfering with the parts of the brain that control hormone production, the hypothalamus and pituitary gland. All hormones (thyroid, adrenal, growth hormone, melatonin, ADH (anti diuretic hormone), and sex hormones are often deficient.

In addition to low hormones, hormone receptors can be affected- so blood tests may be "okay," but you feel like your hormones are low (see my women's health website, for lists of low hormone symptoms). In addition to low hormones our liver can have problems activating and breaking down (metabolizing) hormones. So what does this mean?

Well, we infected ladies can become raging lunatics- particularly those of us still cycling (thank God I am 53 and done!). You can expect worsening Lyme symptoms during PMS weeks, (highest hormone levels) and during (or right after) your period (lowest hormone levels). To complicate this further, Lyme has its very own 4 week cycles......

So what's chronically infected woman to do? Two things: (1) support your liver and (2) support your sex hormones.

Liver Support

The liver is where hormones are processed, activated and broken down. There is a saying in Chinese medicine,"happy liver, happy woman."

In Lyme our liver is already overwhelmed clearing away dead bacteria, and processing antibiotics/medications and hormones. It's no surprise that liver nutrients become depleted, leading to a "congested" liver. This can cause us to feel sluggish, irritable and depressed. We may also have headaches, nausea, breast swelling, menstrual cramps, abdominal bloating, constipation or diarrhea, and nipple itching. Add to this hormone fluctuations and Lyme, Bart,and Babesia toxins and its a mess.

Things that help the liver:

1. Avoid alcohol, caffeine, dairy, sugar as much as possible (I know we are doing this most of the time so let’s not get too hard on ourselves- my opinion, this diseases is hard enough). If you have to cheat do it before ovulation!

2. Supplements like milk thistle and Lipotropic Complex (I like the one made by Integrative Health). Talk to your doc about these. At first use them daily (start slow to avoid nausea if your liver is particularly sluggish) and after you are doing better you can use them in the 2 weeks before your cycle.

3. Liver nutrients are important and can be taken anytime of the month, but run them by your doctor! The most important supplement for the liver is probably vitamin C, 1000 mg 2-4 times/day (too much and your bowels can loosen), lipoic acid, 100 mg twice daily, B vitamins- particularly Folic acid (many of us need methyl folate (Deplin prescription, or Folapro, by Metagenics), methyl B12, NAC, 500-1500 mg/day, Calcium -D glucarate, 1500-3000 mg/day (I talk about this in my book), reservatrol (expensive and I don't use it much but popular in Lyme books), pycnogenol (another expensive one use a little here and there). CoQ10 is great and can be measured- but it interferes with Mepron action so has to be used at the right time.

4. Acupuncture is great for Lyme and if possible schedule appointments in the 2 weeks before your cycle.

5. Food: wheat grass, green vegie drinks (see my juicing blog below), ground flax seeds (must be ground to work), sprouts (all of them and so cheap to do yourself),legumes (beans and lentils), dark greens (kale is best!!), cruciferous vegies (bok choy, broccoli, cabbage...)

6. Exercise. I know must of us can barely get out of bed many days but what ever you can do helps. Gentle movements can help the liver. Whatever stretching you can do helps. Yoga is great and helps the immune system.

7. Detox such as body brushing followed by infrared sauna or detox baths and colonics all help

Supporting Your Hormones

Natural hormone support is safe and can help you deal with Lyme. At any age, the stress of chronic infections lowers progesterone, (a precursor to cortisol). I like to think of progesterone as a "luxury" hormone because she is only made during "good" times ie times suitable to make babies (no infections, stress and lots of food). Lyme and chronic stress are not such times (maybe nature's way of protecting us against getting pregnant while infected). Also our infinitely wise body will always make cortisol over progesterone. Evolution does not care if we are a little crabby or bloated, while fighting wild beasts and infections.

Low progesterone can cause: heavy bleeding, short cycles (every 26 days of less), skipped cycles, headaches, insomnia, PMS/moodiness/sadness, bloating, or bowel upset, all before the period.

If you suspect your hormones are off, these blood tests (on days 19 to 21 if you are cycling) can help:

-Progesterone (it should be over 11).
-Thyroid (TSH, free T3 and free T4). TSH should be over 2.0

If needed, use natural progesterone (orally or skin cream) on days 15- 25 of your cycle. (Details of how to do this are in my book, The Natural Hormone Makeover)

If your ovaries are forty years old (or older), know that you no longer make progesterone reliably and your estrogen may be starting to drop also.

Estrogen normally starts to fall a few years later than progesterone, but Lyme can speed this up. It is not uncommon for infected women to show signs of low progesterone and low estrogen in their late thirties.

Signs of low estrogen are headache, fatigue, hot flashes, sweats, lack of sex drive, vaginal dryness, urinary frequency, hair loss, dry eyes, dry skin, dry throat, dry everything- all worse during and after the period. These symptoms are a lot like a bad Lyme day, so if in doubt, measure an estradiol level. It changes day to day but, if its under 60, consider using natural Estradiol, (skin lotion, gel, or patch).

Vaginal discomfort (dryness, pain, and itching) can be hard to tell from yeast overgrowth. Estriol vaginal suppositories (made by Bezwecken and available online) are great. I alternate these with yeast suppositories as needed. Let your doc know if you start these (Estriol). Estriol vaginal suppositories are safe (they can be used by women with breast cancer). Start with one/per day for a week, then one every 3-4 days as needed.

Transdermal (topical) testosterone is sometimes needed and can even be used vaginally. I only give it after I have supported a woman's DHEA (DHEA-S above 120), as most women make testosterone from DHEA. You have to be careful with Testosterone as it can cause hair loss (use Saw Palmetto to avoid this). Be sure to have your doc check a free testosterone level.