I went to see a rheumatologist this afternoon about my recent diagnosis of osteoporosis. I was pretty nervous, ready to do battle about whether I have Lyme Disease, given my previous experiences with rheumatologists. I looked up lots of information about premenopausal osteoporosis, so I could keep the conversation focused on the current problem and also because I like to learn enough in advance to understand what a doctor is talking to me about.
First, a little more background on premenopausal osteoporosis. Usually it is a secondary problem that affects mostly women who have a different primary complaint. It seems that the most common scenarios are women who have taken a lot of steroids (like for asthma, not just athletes), who have malnutrition (from anorexia or inflammatory bowels), or who have experienced endocrine disruption (like missing 12 months worth of menstrual cycles).
According to an article in Endocrinology Today, the treatment of the underlying cause is more important than using osteoclast inhibitor drugs, which have only been approved for premenopausal women who must continue steroids for their primary health problem. Otherwise, dealing with estrogen deficiencies and improving nutrition are the key to halting and reversing bone density loss. The other, equally important factor for all women with bone density loss is exercise of a type that strengthens muscles and builds bones. One final note is that people with bone density loss should avoid smoking and alcohol.
Osteoporosis and Chronic Lyme Disease
As I read through several articles, I thought about what risks for osteoporosis a person with Lyme Disease might face as a result of untreated chronic illness or from the treatments. I found a list of risk factors for osteoporosis, published by the NYS Dept of Health, that has several factors useful to consider:
- Low weight for height. I lost a lot of weight when I first became debilitatingly ill. Then I lost more weight on all the antibiotics which destroyed my intestinal flora. Several other people I’ve met who have chronic Lyme Disease are on the overly-thin side.
- Temporary loss of periods for more than 12 months or infrequent periods for several years. Many women with LD whom I’ve met have had menstrual problems, either temporary cessation, PCOS or other problem indicating hormone imbalance. I had my own such problems starting in 2002 that I didn’t get treatment for until 2008.
- Chronic diseases including: eating disorders, inflammatory bowel disease, malabsorption, neurological diseases, lupus, and rheumatoid arthritis. Anyone on long term antibiotics falls in the category of malabsorption. Then a repeated symptom I had was bowel inflammation (though it was never diagnosed as a separate disease). The last 3 diseases share a lot of similarities with Lyme Disease.
- History of bed rest or immobility for more than 6 months. For many chronic LD patients with neurological problems, joint pain/swelling or severe fatigue, even the mildest forms of exercise may be beyond reach for extended periods of time. My history of bed rest was over 2 years that I couldn’t walk. Then my immobility that lasted even longer, only starting to improve after a series of colonics. Only in the past few months since I started coiling have I had the strength, stamina and neuromuscular control to be able to really walk around.
- Certain medications, including: immunosuppressants, steroids and thyroid medications. Immunosuppressants are sometimes used in LD misdiagnosed as autoimmune disorders. Steroids are used in LD patients who have joint inflammation (not advisable). And many people with chronic illness develop thyroid problems as their bodies go into endocrine overdrive to compensate for the long term dysfunctions, resulting in taking thyroid medications.
There are other risk factors that may apply to some people with LD, but these seemed the most specifically associated with the illness itself.
Osteoporosis Treatment Plan
Back to my appointment with the rheumatologist. He was very friendly and talkative. We discussed my clinical history. He was appalled that it took me more than a year to be diagnosed with Lyme Disease . (What a relief.) Then he said the key issues for me are
- making sure that I get enough calcium and vitamin D in food form (rather than only as supplements) and to keep working on improving the condition of my intestines to increase the amount of nutrients I absorb.
- working up to doing regular exercise, particularly developing a toning program using weight machines.
He suggested finding a gym that I like and a qualified trainer in addition to continuing yoga. He said I could begin cardio exercise if I wanted, but that muscle building was more important. He didn’t think I need drugs or physical therapy. (Another relief.)
He asked me to come back again in a few months to make sure I’ve made the changes in my lifestyle and see if I had further questions after trying all this. And in a year, I should have another bone density scan to make sure the bone loss process has begun reversing itself.
I very much appreciate the conservative approach he took. He seemed to understand that the osteoporosis was from a long term nutritional deficiency, and hormone imbalance. He thought that correcting these problems (including staying on metformin for as long as necessary to keep my menstrual cycle regular) and rebuilding my body as I get rid of the Lyme Disease would be all that is needed. He seemed to trust that at my age, my body still has the capacity to regenerate itself. His attitude was very reassuring.
On a side note, he wanted to know how I’m keeping the Lyme infection in check and asked about the coil machine…
- Babesia, back of legs, 3 positions: butt+heels, calves+thighs, back of knees, 1 minute each location; back of ilium, 1 minute each side; 3 sections of spine, 1 minute each; shoulder blades, 1 minute each side; back of head, 1minute; top of head, 1 minute; liver, 10 minutes
- Babesia, spleen, 10 minutes
- Babesia, top of feet & ankle, 1 minute; shins together, 1 minute; knees together, 1 minute; front of thighs together, 1 minute; front of ilium, 1 minute each side; sides of ribs, 1 minute each side; front of shoulders, 1 minute each; sides of head, 1 minute each; chest, 10 minutes
- Candida, abdomen, 10 minutes; chest, 2 minutes
- Bartonella, abdomen, 5 minutes; chest 2 minutes
- skin brushing
- foot soak in epsom salt
- several hours of rest (but not sleep)
- lots of water (extra compared to my usual grand amount)
Yesterday’s yoga class knocked me out big time. I’ve had muscle pain all day, in my arms, legs and lower back. The fatigue that has accompanied it has me a little worried about how I’ll fare when I go on a trip with no coiling for 2 weeks starting Thursday. I fear that the Bartonella is more active — hand and foot pain this morning, floaters in my vision tonight, extreme fatigue — now that the Lyme and Babesia are more under control. I heard that Lyme bacteria emit a chemical that keeps the other diseases dormant or less active, and that their symptoms become more noticeable when the Lyme load is reduced. Now I’m experiencing it for myself.
I thought I would do something when I got home from the doctor’s office, but I couldn’t. I had to sit with my eyes closed for a long time. I napped a little, drank water, listened to old episodes of wait, wait… don’t tell me!, and rested from 3pm till I started typing this blog. Now I’m off to bed.