Protocol Update

James's protocol has changed practical every month since October. Some months, the changes were minor, increasing dosages, adding one herb. Some months, much more significant. My most complete description of his protocol was in April with and update in June. At that point, I thought his protocol had stabilized somewhat because, although his protocol had changed a lot since his April update, there were no changes from May to June, only the second time since he had begun he had no changes at all. Little did I know that our visit in July would radically change his herbs once again.

To backtrack a little, he had a Prostaglandin D2 test, requested by Dr. Li, in June. The results were normal. Dr. Li was surprised. She was actually so certain that they would not be that when I said we had the test done, she completed my sentence by saying, "and the results were high." She then asked about a string of other tests, which we hadn't had done (she hadn't asked for them). And continued as if he had Mast Cell Activation Disorder. And, I think this is where we will stand. He will have no official diagnosis and if he stays reasonably stable (at this point, he is. He has improved considerably both under her care and since being diagnosed at all and cleaning his diet), I will not pursue further testing. If at some point his health slips, I know the direction to push in.

Current Protocol:

Put on two times a day, after bath and after shower. He is working up to complete coverage after bath, starting with just his legs. Right now, we use about six jars a month. The cream is IgE lowering, as can be seen in this abstract.          


Huang Lian and Niu Bang Zi

Both are bath herbs and he is working up to his full dose of two teaspoons of Huang Liang and two packets of Niu Bang Zi. He does this bath once a day.

He takes ten Mei Huang 4 twice a day. This is half the dose he was taking previously. Mei Huang 4 has some (not all) of the components of FAFH-2. 

He takes five Mu Lian tea two times a day.

He takes five Good Mood tea twice a day and this perhaps has been the most stable part of his protocol.

He takes six  Shi Zhen Tea 1A two times a day.

Finally, he takes six Shu Chuan Tea two times a day. This was the one I was happiest to add, as I know it is used, in part, to help with environmental allergies.

With additions and subtractions, our cost stayed steady this month at just over $1000.

Three's a Crowd?

Balancing Between a Research Allergist and a Local Allergist

Dr. Li does not replace your local allergist and, in fact, on her website under the FAQs, she outlines why she likes to work with local physicians and why they will need to do your blood work. Still, almost from the beginning, I have struggled to decide what issues are a local allergist issue and what are ones for Dr. Li.

An example that worked well

In March, James had hives for about three weeks. When they first began, we treated them ourselves and thought I would mention them to Dr. Li during our regular consult. Hives are not unusual for James.

As the week progressed and they were not under control, it became obvious that they worsened during bath and shower (likely from the hot water). I contacted Dr. Li by e-mail to see if we could eliminate one to reduce his water time. She responded quickly and told us to stop his bath until further notice.

By the beginning of the next week, we still didn't have his hives under control, so I e-mailed his allergist for advice on a protocol to help control the hives. It took a couple of weeks and a few e-mails to get a protocol to begin to work. The hives were improved but he still had daily breakthrough hives. 

During that time, we also had our regular phone consult with Dr. Li. She adjusted her protocol as well. Two days after her changes, the hives stopped and I started reducing his western medicines. It took about a week to return to his previous levels and, although he continues to have mild hives occasionally, for the most part, the issue is resolved.

An example I'm less comfortable with

Dr. Li had casually mentioned mast cells to me a couple times (note to self: Dr. Li doesn't casually mention. If she says something, it is not in passing.). After the second time, I e-mailed James's local allergist asking if Mast Cell Activation Syndrome* was a possibility for James. And he replied yes, but he also sees people that it could be a possibility for that don't have it. So, we agreed to wait until James already needed blood work and run a tryptase* test.

Which we did and the results were normal. And now Dr. Li says not so casually that she is concerned about his mast cells and she wants him tested, but she wants a Prostglandin D2* test. And this puts me in the somewhat awkward position of returning to our local allergist, 'Thanks for the first test. Yes, I know it was normal. Hmm. I would really like this second test, supposed to be better. I hear. Carry on."

This is not a matter of not trusting James's local allergist, because I do, this is a matter of Dr. Li having a more complete picture of James's health. Although we don't talk long, we have had ten consults between October and now (nine planned and one in between). I have attempted to document for her each symptom and improvement. His local allergist has had one consult and a handful of e-mails.

I should add that our local allergist is really supportive of our seeing Dr. Li and told us she was "brilliant." So, this is more about communication and using each of their time and resources wisely.

Have you had any issues balancing doctors? How do you handle it?

*  Definitions available on the Glossary page