Today we went to the Hunter Hopkins Clinic, which specializes in Chronic Fatigue Syndrome. It was a very long appointment and we are both exhausted from it. The appointment started at 9AM and we didn’t leave until 1PM! So this will be a short summary!
We started the appointment with a cognition test, and that nearly wiped Brad out! Then Dr. Black came in and she was very nice. We talked with her for about two hours, telling her Brad’s extensive medical history. After talking, she started a physical exam on Brad. After listening to his breathing etc, she started assessing his muscles. She had him lift up his arms and press upward while she pressed downward on them. He was able to do it the first time. She did a few other things, then had him do the arm thing again, and then a third time.
Well this was entirely too much for Brad’s body! Each time he lifted his arms, he had more and more spasms, and by the end of the third time, he couldn’t talk, was spasming all over, and was having trouble breathing. Thank goodness she decided to stop the physical exam there! Due to Brad’s response to the physical exam, she decided not to give him the tilt table test or exercise test, for which we were very grateful!
She told us that Brad meets the criteria for both Chronic Fatigue Syndrome and a condition called Chronic Inflammatory Response Syndrome, which further lab testing might help confirm. She is quite hopeful that he can improve, which was great to hear. She wants him to start on some supplements to help him detoxify and to help the muscle spasms. Here are the supplements she wants him on:
probiotic that includes saccromyces boulardii
magnesium citrate, glycinate or other chelated magnesium
topical magnesium (to stop spasms when they are occurring)
progesterone cream (to prevent spasms)
At the end of the appointment, the very nice nurse named Mimi took about 15 vials of blood for various testing. Poor Brad, he hates needles! This was really tough for him. We have a follow up appointment via phone next month to discuss his test results.
When we got home, I fell asleep almost right away! We were exhausted! When we woke up, we called Brad’s parents. Brad’s mom told us that kombucha has the probiotic yeast in it that the doctor recommended, so Brad is going to start drinking kombucha, too! I already drink it every day. Kombucha and fermented foods (which also have the right probiotic) have much higher quality probiotics than anything you can buy in the store, so I am really excited about that and Brad’s mom is too.
Brad’s mom is also going to give us some of her magnesium pills so that Brad can start them right away while we are on our trip! I am really really hoping that we start to see some improvements quickly.
And now I must rest some more, because I have to facilitate NAMI tonight. What was I thinking!
I got a pic of Brad and a pic of Hestia during the appointment with my cell phone, so it’s not of the usual quality. Enjoy anyway!
Rest well, all of you!
Rest easy you two. Glad the appointment brought some hope.
At least you have a direction to go and advice on ways to help his condition. I’d say that was a win. It will be so wonderful to see him regain some strength and stamina. We are sending SPOONS and HUGS.
I go to HH as well. Have the supplements helped? I am also very interested to see if the progesterone cream has helped the spasms, I am suffering with the same symptoms.
Did you get your lab work results back before she left the practice? I see Dr. Lapp but saw Dr. Black a few times and really liked her. However, since she left I am not sure what to do about my abnormal results. I would love to compare. Thanks! Shannon
Please feel free to email me.
It’s hard to say if the supplements and cream have helped or not. Sometimes it seems he’s doing better, sometimes it seems he’s doing worse. And it varies so much depending on what we’ve had to do in a particular week. But we’re sticking with it! HH did mail us the test results, here is a blog entry where we talk about what they say: http://www.doctorv.xyz/2019/11/01/theres-something-wrong-with-brad/ . We have a follow up with Dr. Lapp in December, so we will hopefully get a prescription or two to deal with some of what the results found.