An Unexpected Death – Of the Worst Kind
Since I last wrote about my experiences with Dr. Chia, I have been walking through a valley. Walking…not collapsed –amazingly, given what’s happened.
When I headed to Dr. Chia’s office the first week of August, I was in the midst of helping my parents and family through the sudden loss of my brother who took his own life in July, four days after the burial of my mother-in-law, and eleven days after my last posting. One of the blessings in the midst of this valley is my ability to hold up through four solid weeks of caring for others and planning a family memorial. I am so grateful for that!
Not surprisingly, the day after my brother’s memorial, and four days after seeing Dr.Chia, I got hit with the second bout of diverticulitis in two months. Dr. Chia has explained to me that diverticulitis is very likely caused by the enteroviruses that he believes led to my ME. However, when I see him in November, I am going to ask him why diverticulitis responds to antibiotics if it is viral. I’m wondering if it starts out viral and then as other bacteria invade it flares up.
But I’m getting ahead of myself…back to my August appointment…
I almost cancelled the appointment since I did not have medical insurance at the time. But Dr. Chia’s receptionist assured me that if I told him I was without insurance he would give me a discount. Fortunately, I was able to get the expensive blood work done before I lost my insurance.
After I gave Dr. Chia a simplified list of my weekly activity levels for May through July, he went over my blood tests with me, as he always does. He said my Rheumatoid Factor was down from my last blood test in May, that my T Cells were calmer, and that my C-Reactive Protein level was down. All of this was good news.
He told me to start on Inosine, which is the active ingredient in Immunivor, and is obtained as a supplement. I was to begin with one 500mg tablet per day and could expect to be hit with increased flu symptoms 2 to 3 hours after taking it which is a sign that it will be effective for me, as it is with one-third of his patients who have tried it. He told me if I had flushing, I was to separate my Equilibrant dose from the Inosine by two hours. He also said that if I was better after about a week, to lower my Equilibrant dose by one (I was on 5 at the time) and add another 500mgs of Inosine. He cautioned me to continue to watch for joint swelling, a sign of possible autoimmunity.
He also mentioned that improved ATP cell function would give me greater energy. I cannot remember if this is connected to the Inosine. I’ll ask him when I see him at my next appointment. I told him I had experimented with B1 (after reading the article here), but it had not helped me. He said that vitamins do not help enterovirus. When I asked if the statins I take for cholesterol could be causing muscle pain he said that the pain is due to Interleukin 12 and Interferon.
He suggested I take CoQ10 for muscle pain. I have just added this to the fist full of medicines I take twice-a-day!
Dr. Chia concluded my appointment with the usual exam, checking lymph nodes and “hot spots” where enteroviruses tend to take up residence (a triangle in my abdomen).
My hot spots are still hot. When I told Dr. Chia that I currently had no medical insurance, he told me to have blood tests again 4 to 6 weeks after I begin the Inosine, but only if I have insurance by then. When he handed me the paper to take to his scheduler, I saw that he had discounted his fee by three-fourths! I was so grateful I had not cancelled the appointment! He had me make another appointment in three months. Dr. Chia continues to impress me with his concern for his patients.
Since I got hit with diverticulitis four days after seeing Dr. Chia, I postponed beginning the Inosine regimen until I was finished with the antibiotics and doing better. I began it at the end of August.
About 3 hours after taking my first dose, I was hit with intense pain throughout my body. This continued for four days, growing less intense the fourth day and much less on the fifth day.
I had also lowered my Equilibrant to 4 on the fourth day, continuing on one 500mg Inosine per day for another week, waiting to increase it again until I was better from a major sinus cold. When I increased my Inosine to 2, taking the second one before bed, and lowered my Equilibrant to 3 per day, I was hit during the night but was able to go back to sleep with pain medicine.
I have also found adding the second dose right before bed seems to hinder my ability to get to sleep despite the fact that I am on sleeping medications. I’ve started taking it a couple of hours before I go to bed and this seems to be helping.
I stayed on this dosage a week, then I checked with Dr. Chia to ask how far I should raise and lower these two medicines. He said to take Inosine to 3 and stay at 3 Equilibrant.
I added half of the third dose in the morning and half at night and got hit very hard for five days. But now I have leveled out. During this whole process I had some better days than I had been experiencing on just the Equilibrant. I am hoping as my dose is now level that my body will stay somewhat level for a while. I still am experiencing the pain I normally live with, some days are better than others. But I also am experiencing more days with better energy.
The Hidden Cost of Suicide
The fact that I am seeing any improvement at all is an incredible blessing since my parents and other family members continue to need encouragement and I am working through my own grief over the loss of my brother. It is a great comfort to know that when I was most needed, my body cooperated. I know this was due to the prayers of my friends.
I was saddened to read Cort’s article about the loss of his “Brother by Choice” due to suicide. Having been near the epicenter of that bomb going off in my family, and having some idea how far and wide the shrapnel has impacted others, it causes me to pause in the valley and realize that no life is without value and is of immensely greater value than the one suffering, who contemplates taking his or her own life, realizes. I wish I had more often let my brother know how valuable he was. I pray that you know how valuable you are and that on your darkest days others will affirm that to you. No life is without purpose, even if we can’t see what that purpose is.
Until next time…we press on…believing there is light at the end of this valley because there have been glimpses along the way.
Like this blog? Make sure you don’t miss another by registering for our free ME/CFS and Fibromyalgia blogs here..