Today was Brad’s phone appointment with his new Chronic Fatigue Syndrome (CFS) doctor, Dr. Lapp. Dr. Lapp founded the Hunter-Hopkins Center where Brad is being seen. He is in partial retirement, but has come back more to take over from Dr. Black. Dr. Black is the doctor that Brad saw in person over the summer, but she had to leave the practice due to a family situation. So all that is to say that Dr. Lapp is very experienced in dealing with CFS!
We started out by going over Brad’s testing that he had done with Dr. Black. His blood tests are all normal, which is good. While he does have a defect in his body’s ability to convert the thyroid hormone T4 into the active version T3, he is not deficient in either right now so no supplement is needed.
Brad has some mutations in his MTHFR system which affect his absorption of B12 and folate. This means that he needs methylB12 and methylfolate instead of regular B12 and folic acid.
Other than that, all his supplements are good ones and should be continued. While we did get his vitamin levels tested from his general practitioner and the levels were within “normal” ranges, Dr. Lapp said that Brad actually needs more of these vitamins. He needs his B12 in the 2000s range, the folate greater than 20, and the D3 in the 50-60 range, for example.
Brad had many tests done to assess if he has mold toxicity. The testing showed that while genetically he is somewhat sensitive to mold, he doesn’t have a mold toxicity right now. This is a good thing!
Two out of the four tests for mold toxicity came back positive, but those two tests also come back positive for people with CFS. All other mold toxicity signs were not there. So the diagnosis of CIRS is probably not right. It is just a diagnosis of CFS and MCS (multiple chemical sensitivity). He’s had the MCS diagnosis for many many years now.
This means that Brad doesn’t have to continue taking the oils every day that he had been taking, too. This is very nice because the oils have a lot of calories so Brad wasn’t able to eat as much of other healthy foods. He will be happy to be off of them!
For the MCS, Dr. Lapp said that continued avoidance to fragrances and chemicals is key in keeping up Brad’s ability to tolerate them in small amounts when he goes out in public and can’t get away from people wearing them.
Interestingly, Dr. Lapp also talked with us about one of Brad’s more peculiar symptoms that has always confused most of his other doctors. Brad has good balance and can stand still, even on one foot, for a rather long time. It’s walking, though, especially tandem walking where you put one foot right in front of the other, that makes him so extremely fatigued and fall over. Dr. Lapp said that he has seen this in several other CFS patients. So it’s nice to know Brad is not alone!
He is sending us a binder of information and a DVD about CFS for us to peruse, which will be nice.
As to treatment, he wants Brad to exercise some to prevent too much loss of muscle tone. So he wants Brad to move his arms and legs some every day to keep them from deteriorating too much.
In addition, he is prescribing gabapentin for Brad. This is a drug that will help with muscle spasms, muscle jerks, pain, and sleeping. At least hopefully it will!
We have a follow up appointment in March, at which point we may discuss adding Skelaxin to his medication list to help with spasms and pain.
All in all it was a good appointment! It was just very tiring for Brad to be talking so much for an hour and thinking so much. So he’s taking a nap right now.
Progress! It’s so encouraging and positive, and so very good to hear. I love you Brad.
Linda
I’m so glad you are getting some help finally. First step is always a diagnoses. Love you both.