Author: Margo4 (---.dsl.intrex.net)
Date: 08-18-04 21:23
Katina,
I just returned from a vacation, or I would have answered your post sooner. I, too, have a child (now 13) with anterior uveitis. We have a diagnosis of presumed sarcoidosis, as all of the blood tests support sarcoidosis.
She has not had a biopsy because there is no clear place to biopsy. Some of her doctors would like to do a gallium scan to look for a likely area to biopsy. However, since the results of a biopsy would not affect their treatment recommendations, we don't think a biopsy would be of real benefit.
She has had scans, x-rays, and lung function tests, and has seen numerous specialists. The uveitis has been the most serious problem. In addition, she had unrelenting headaches for a year and a half (which got much better with the Marshall Protocol), extreme fatigue (now much less of an issue) and lack of stamina, irritability (now gone), stomach pains and nausea (also mostly gone), frequent urination (which comes and goes), sore throat, and some breathlessness.
The uveitis has been such a serious problem because of its association with eye damage. She has anterior uveitis (also sometimes called iritis). The eye inflammation, steroid eye drops, and oral steroids she was treated with early on caused cataracts to form in both eyes. Both uveitis and steroids (including steroid eye drops) are associated with cararacts and glaucoma.
The best way to avoid these complications is to clear up the uveitis. The steroid eye drops are probably necessary to help protect the eye from possible damage from the inflammation. I would also consider the Can-C drops.
The overall Marshall Protocol(MP) has helped my daughter the most. She was being treated with other medications before we learned about the Marshall Protocol. It has been difficult to get the doctors' support in stopping these other medications. If your daughter has not begun using other medications, you are in a very good position to begin the MP. Patients with diagnoses other than sarcoidosis (other diseases with a similar cause) have also benefited from the MP.
Here is a summary to starting the MP:
1. Request the tests of the vitamin D metabolites (See the information at the top of the page about the tests.) There are a lot of medical articles that discuss abnormal levels of vitamin D metabolites in sarcoidosis patients to show your doctors, if necessary. Get a hard copy of the test results and share the numbers with Trevor. Most doctors are unfamiliar with the vitamin D ratio, so will have trouble interpreting the test results.
2. Start avoiding all dietary sources of vitamin D. (See the threads on this site about vitamin D in foods.) While this may be hard, there are lots of good foods without vitamin D. In the US, milk and butter are supplemented with vitamin D, as are many cereals and soy milks. Egg yolks and seafood are also high in vitamin D. (This step can be taken on your own. We found our daughter immediately felt better.)
3. Seriously avoid sunlight. Order a pair of NoIR sunglasses (See the link at the top of the page.) Cover up the windows, stay out of the sun, don't go walking in the daylight, etc. The uveitis may already be making your daughter sensitive to the sun, so perhaps this won't be a big change.
4. Begin using Benicar. We had to add a new family practitioner to the roster of doctors at this point. He was willing to write the prescription for the Benicar for a short while, then wanted us to get the Rx from one of the specialists. The ophthalmologist was willing when she saw some medical articles supporting the use of Benicar and related ARBs in helping to prevent diabetic eye disease. Our daughter adjusted easily to the Benicar, and immediately felt much better. (The doctors had us begin with 20 mg three times a day for several weeks, then agreed to switching to 40 mg three times a day.) Benicar has a very good safety profile, which is especially impressive when compared to the drugs commonly given to treat sarcoidosis and uveitis.
5. Begin the antibiotic regimen. The doctors agreed after seeing the medical papers about the use of minocycline in treating sarcoidosis. Since minocycline is viewed as a very safe drug, frequently given to teens to treat acne, they were not very worried about it.
Let us know how things are going this week.
Margo
Tatiana,
My daughter has had a very tough time. She has not been well enough to be in school. She is much better now, and was able to have a lead role in a musical play this summer. She never had a biopsy, but she had many tests that were hard to tolerate. We always try to do something special after a tough test, which helps a bit.
Margo
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