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!
Two deaths in her family in a couple of weeks added up to alot of stress for Christine
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.
Inosine
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.
Christine started on Inosine only to be hit with flu-like symptoms – which Dr. Chia, suggested, was a good sign.
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.
Tinkering…
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.
The tinkering – a common need when dealing the complex immune system – continues.
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
Christine
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.
I’ll be curious to see how Inosine continues to work for you. Dr. Rey at the Klimas Clinic had me try it but just a part of the lowest dose would put me sound asleep so I couldn’t take it. And what a generous doctor you have. They now take Medicare at Klimas or I could never afford it since they left U Miami.
My deepest condolences on your losses. A loss by suicide is especially painful.
The inosine has the opposite effect on me but taking it a couple hours before I got to bed has helped. I forgot to mention that at one point the inosine was making me shaky, but I’m not having that problem now fortunately.
Glad your insurance is working out to see Dr. Klimas!
Thank you for your condolences.
Christine
Immunivor almost killed me. Dr. Klimas gave it to me; had me keep increasing it even when I had chest pain and very high blood pressure, then severe anxiety.
Ends up I was having Prinzmetal Angina – coronary spasms from a mast cell activation event from the Immunivor. I then began having heart attacks as it got worse, EVEN THOUGH I STOPPED THE MEDS. I now have constant mast cell activation since the Immunivor (three years later) and poorly controlled hypertension plus angina (along with my CFS/ME and hyper A POTS).
ALL FROM IMMUNIVOR that I took THREE YEARS AGO.
Again, it’s been three years since I took Imunivor and I still never recovered. Worse of all, Dr. Klimas totally ignored the entire situation with me, not even calling me back or helping during the heart attacks and ICU hospitalizations – INEXCUSABLE.
Take Immunivor at your own risk; Dr. Chia is playing with fire to tell those that react to the natural Immunivor to increase its use with side effects.
Well that’s a cautionary tale! I didn’t know immunovir could activate mast cells but I guess that’s a risk of using any immune activating product. Now you’re system seems to be reset……..Wow! That really says something about watching your symptoms and if they’re getting worse to back off even if you’re getting advice otherwise.
Have you been able to control the situation at all?
WOW! Sorry about that for you! I had a problem with mast cells attacking my heart too. It’s called Kounis Syndrome. (It can appear to be Prinzmetal Angina when it’s Kounis Syndrome.) I spent a very scary time in the hospital with this attack. It looked like a heart attack, but there wasn’t actual muscle damage. The treatment for this is massive antihistamines, IV’s and nitroglycerin. This is what pulled me out of it. I was put on a mast cell stabilizer after this – GastroCrom. That has really helped me with MCAS. You might ask about adding that to your H1 and H2 protocol, if you aren’t already on it. (FYI, I also have HyperPOTS with higher bp’s.)
We never know what may trigger a mast cell degranulation. Meds can for sure do it.
Issie
Oh my. Christine, my heart breaks for you. I can imagine many things and have experienced more than I care to say but I shudder thinking of losing my brother this way. Saying that I’m sorry seems completely inadequate, but I am deeply sorry. You now have another prayer added to those of your friends. I hope, in the midst of all you’re experiencing, you will find ways to care for yourself as you’ve cared for others.
I am currently without a doctor, since I’ve moved to another state to be closer to family. But, when I was under the care of a wonderful doc in NC, he felt that an initial bout of diverticulitis was perhaps at the root of my illness. Like you, I have experienced several bouts wth diverticulitis, the first of which (looking back) led me on a downward spiral until I completely broke. Reading the connection to enteroviruses is new, I wouldn’t have known this. Also like you, I question the effect of antibiotics if it is viral in origin. Can a virus set the stage for bacterial infection, it seems a logical possibility.
As for dark days, there have been many. Coming to terms with being ill without a seeming end took some doing. There were times I’d wonder if there was value to my life. I now know, without question, that there is great purpose still!
Indeed, we press on. Thank you for your courage in sharing this time in your life.
Sharon
Thank you so much, Sharon, for your kind words and your prayers.
My diverticulitis has only hit in the last two years, though I was diagnosed with diverticulosis (a pocket in my intestine) several years ago. It hits right on the point of the triangle of hot spots Dr. Chia says enteroviruses take up residence. It is very interesting that your doc said diverticulitis may be the root of your ME. Dr. Chia’s research would certainly agree with that.
I am so glad you have come through the dark days with the belief that your life has purpose that supersedes this illness. I will be praying that you find the perfect doctor for you in your new home town.
Thank you again for expressions of sympathy and your prayers,
Pressing on…
Chrisitne
I’m so sorry Christine for your loss. Thank you for the reminder we are all invaluable. I am bedridden and it is good to remind myself I am important to my family even if I am so limited. I also tell people I love how important they are to me including my fabulous carer!
May I ask about inosine? Does Dr Chia intendfor you to stay at 3 x 500mg of inosine now indefinitely. Also my understanding is some docs pulse inosine I take it Dr Chis doesn’t? Does he too think it is just as effective as immunovir? Sorry lots of questions!
How lovely of him to charge you only a quarter of the bill as you lost your insurance. A man of compassion indeed
Annie
Thank you for your kind words Annie.
Dr. Chia didn’t say how long he plans for me to take inosine. When I began treatment with him a year ago with Equilibrant, he said the treatment plan would take about two years, and that some stay on a low dose of Equilibrant after their immune system has become balanced again. That is the hope anyway.
He isn’t having me pulse the inosine but does have me split the daily dosage. I have been taking a half dose in the morning, the other half at night, being sure I have something in my stomach.
Though he mentioned inosine is the active ingredient in Immunovir, he didn’t say if he thought one was better than the other. That’s a good question. Since he uses it alongside Equilibrant, maybe it has something to do with the ingredients in Equilibrant, but I’m just guessing. I’ll make a note to ask him that at my appointment next month.
Please feel free to ask all he questions you wish!
So glad you have a good care giver…a huge blessing…and it sounds like your carer is blessed by you : )
Thanks again for your kindness.
Blessings…
Christine
Sorry Christine it has taken me a few days to thank you for helpful reply and kind words. Sorry I didn’t word my question very clearly about does Dr Chia intend for you to stay on 3 x 500 mg inosine indefinitely. What I meant was do you know whether he wants you to increase the amount of inosine even further, say to four tablets or more, or whether you know the 3 tablets will be the maximum?
Also regarding feeling worse when taking the inosine, is the idea that after taking the tablet feeling worse is temporary and after a few days on being on one tablet the flare in symptoms should subside at which point you then increase to two and then to three? As I think what happened to you? Many thanks
Dr. Chia has told me to stay on 3 inosine tabs at this time. I assume this is the maximum he will have me go, but I do see him again the first week of November and am to have blood tests before then, so it is possible he will adjust my dosage further at that time.
Yes…Symptom flare after starting inosine then improvement, then raising dose and having same reaction. I believe this is because it jolts the immune system then the immune system adjusts. When it either doesn’t cause symptom flaring or their is no improvement after the flare it means the dose is too high. It’s a lot of trial and error…and hopefully success!
Keep pressing on!
Christine
Thanks Christine for your very helpful reply
I am sorry for the loss of your brother too, Christine.
When a good friend & ex-work colleague took her own life many years ago. 3 mutual friends and I gathered together after the funeral to chat & remember. At the time, we couldn’t understand why our dear friend took her own life. We couldn’t understand why she didn’t ring one of us at that low time in her life.
I understand a lot more now having been through many year of chronic illness & pain physically, as well as deep distressing emotional lows, mentally.
People don’t take their lives because they want to die.
People (like me, or how I was) take their lives because they don’t want to live (in their deep suffering, mentally, physically or both).
It’s a gentle, but distressing, reminder of how important it is to offer support and understanding to those who suffer.
Hi Victoria!
I recognize your name and picture from. Phoenix Rising. It’s like meeting an old friend in a new place!
I appreciate so much your kind words regarding the loss of my brother. Your statement that people take their own lives because they don’t want to live in their pain and suffering resonates with me. Though I’m glad to know my brother is free of his emotional emotional battles, the most difficult thing in all of this is watching the devastating affect on my parents who are in their 80’s.
I hope you are doing well these days.
Christine
I too am so sorry for the loss of your brother. It’s fortunate you could be of help to others in the midst of such stress and sorrow, and that you found such compassion from Dr. Chia. Good luck with the new regimen and with efforts to restore your health insurance.
Thank you, Carol. I realize more and more how blessed I am to have Dr. Chia in my backyard…and on my side in this health battle!
Keep pressing on!
Christine
Hello Christine,
So glad to read about your journey one more time. I haven’t spoken with you for a while so I hope we can soon. You have done so well in spite of all you have been through of late. How wonderful that this treatment is helping. I agree with you that it is easy to forget the value of life if struggling and in pain for long periods of time. I remember many days stuck in bed thinking that if I could just say a prayer for myself or others, and let it ride on my breathing for the day, that was enough to feel worthy. I still suggest it to fellow patients when they feel that there is nothing we can do. Breathing is enough and a good thought riding on it is powerful as you know.
Thanks again for reading and commenting. It was great to catch up with you on the phone today!
Praying with you in the HHS crisis.
Love,
C
Dear Christine,
Appreciate your impressive documentation of extraordinary detail with treatment protocols from Dr. Chia. Was wondering how do you measure improvements, i.e. ability to exercise, perform basic self care, concentration, pain levels, brain chemistry/mood, etc. I have read many studies on meds/supplements/devices but not adequate quantifiable summary of results. Dr. Chia is extremely committed to helping CFS/ME patients and is one of few local physicians who attempt to actually cure a patient. Any comment to address this issue? Thank you.
Thank you for your kind comments, Georgiana.
Don’t you just hate it when that nice nurse asks, “On a scale of 1 to 10, what is your pain level today?” Too much pressure!!
Since there are a variety of ways to measure our health, i.e., how we feel each day…and some are quite complicated…I put together a very simple scale, pretty much based on Dr. Bell’s Activity Level scale. Here is what I am using now as a basis for talking with Dr. Chia…
0 – Bedridden constantly
1 – Mostly bedridden
2 – Leave house once/week – Concentrate 1 hour/day
3 – Leave house several times/week – 2 hours work/activity at home/day
4 – 3-4 hours work/activity per day
5 – 4-5 hours work/activity per day
6 – 6-7 hours work/activity per day
7 – Work full-time but with difficulty
8 – Near-normal activity level but still symptomatic
9 – Normal activity level with mild symptoms
10 – Fully recovered
I average between 2 and 6 on this scale. I add a weekly comment regarding any specific symptoms, other illnesses, and stressors. I also keep track of my Equlibrant and Inosine dosage when there is a change. When I first began to see Dr. Chia I kept a specific graph of my Equilibrant dosage, activity level, and pain level (based on my Vicocin amount each day 0-1-2).
I realized after talking with a friend with ME that when we operate at 30% that does not mean 30% of the time we are perfectly normal. It means we are functional at some level 30% of the time. She put in a nutshell what I’ve been attempting to think through. Seems obvious now : ) But it makes me think I should re-think my scale.
I am guessing none of this is much help to you since you were asking about clearer, more specific criteria. If you check quixoticmeblog.blogspot.com, Patrick has a very specific chart in one of his articles. I will see if I can find the specific entry and will post it here for you.
Dr. Chia doesn’t hold out the possibility of a cure but of being able to tamp down the replication of enteroviruses and re-balancing the immune system, then maintaining this with a reduced dosage of medications. This is more than I thought possible! And you’re right, he does seek to treat the illness itself!
Hope something here will be of help to you as you press on,
Christine
As ever, your courage shines out. I am so sorry for your loss. Thank you for continuing to share your journey with us. My thoughts are with you and your family.
What an encouragement! Thank you, Sian!
For me the flu-like symptoms you\ get when you start Inosine is very interesting, because those are the symptoms I get when I use something that raises my energy. I feel better and then the flu-like symptoms hit and I’m always afraid to stick with the treatment.
Hi Cort : )
After my first few increases when I began Equilibrant, the hit came a couple days after I raised the dose rather than a few hours. All of this was a good sign, according to Dr. Chia. I always have stayed on a dose at least one week before raising it and only raising it if my symptoms improved…backing off again if the symptoms worsened. The specific chart I kept at the time helped me see that clearly.
Actually, to have no reaction is, apparently, a sign that it will not help you…that your body either doesn’t need it or it’s not targeting the problem. Also, Dr. Chia continues to caution me about overdoing just because I feel better…not that I listen to that!
Hope this helps. Thank you for always pressing on for us!
Christine
I’m so sorry for your loss and inspired by your bravery. Things like this help me know that I can carry on also. May you be blessed to continue to walk the valley without collapsing!
Thank you so much, Darlene, for the encouragement.
Blessings to you as you press on,
Christine
Please accept my condolences on the loss of your brother.
Thank you!
Well you have been through a time of low bit with CFIDS, and RSD I have learned to see the glass as half full. It is a blessing that Dr,Chia is so considerate.At the new Office Klimas openend there is no discounts for patients and they only take open Mecare or PPO’s. I had an appointment with my primary and he is well aware of the doughnut hole many patients are in.
I took insosine and It did nothing for me. I find a very strict diet with lots of green leafy vegetables helps me.
My condolence for your loss and i hope you get the insurance you need.
Thank you, Maria. I hope your insurance situation will work out too.
Pressing on…grateful for blessing, big and small,
Christine
Hi Cort,
l have the same happen to me when l try to increase vitamins or treatment for energy that l get the flu symptoms flare up. It is very frustrating as people just think that is a cold. If only it was understood that this a very important fact of M.E and still not widely recognised. l don’t get it, how come this happens to us and yet find it so difficult to treat.
My thoughts are that it is a flu-virus in the mid brain, perhaps acquired after the immune system goes down and it makes its way into places of the brain and changes the way the brain works. Does this sound too bizzare? l don’t think so my self because l have been monitoring my brain now for 15 yrs with this illness. Maybe the virus is in different places of the brain that could be why so many different symptoms and why no-one is the same.
Kooky? Well not for me as l would like to try even some kind of radiation to the brain! You get this way when no-one listens you. Dr Chia doesn’t think it is a flu virus either but he is not really sure l think. On my CTScan l have a bright spot-UBO and it looks like it is in the pineal gland area? No-one knows what it is.
@Christine, l am trying Equilibrant myself this week. l had purchased this product last year but retrying again after rereading this blog. l will do the same as you have done and increase each week by one and go back if symptoms increase. l have reduced a lot of previous other things l had been taking before just to see what was doing what and l found that digestive enzymes really can mess with the brain too much and l have reduced my probiotic to only 1 a day and take a prebiotic instead. Who knows we can only try! If l take too much stuff l cannot sleep and feel that it just winds me up too much.
Cheers and will look forward to your next blog.
Ros
Ros,
Very interesting. Dr. Chia told me during my first appointment that my sleep issues were most likely due to enteroviruses infecting the hypothalamus, which controls sleep. Enteroviruses replicate rapidly and spread to anywhere in the body. As I mentioned, he believes my diverticulitis attacks are due to enteroviruses as well. So it stands to reason that they also can infect other parts of the brain. I believe they have invaded my nervous system since I have neuropathy and, I believe, anatomic nervousness system issues.
If you haven’t already, you may want to read my first blog regarding my visits with Dr. Chia. When I began Equilibrant, I started with a half pill, tirtrating up 1/2 pill every 1-2 weeks, depending on my body’s response to it.
I hope to have a new blog up in the next week about my last visit and my failed Inosine trial. I am still taking Equilibrant which I truly believe has made a significant difference in my health. I wish you the best. I would encourage you to take it slowly and remember it is a roller coaster ride which will, hopefully land you on the upswing!
Thanks for reading and commenting!
Pressing on…
Christine
Hi Christine,
Thankyou for your reply. l ranted and raved on but only because of the weird symptoms l have drive me crazy sometimes. l can read at times then not depending on how much l do using my brain but l will go back and look at what has been discussed previously.
l also agree that the nervous system has been “invaded” and l too have neuropathy at times and ANS is not working as l have Orthostatic Intolerance.
l am tolerating 1 a day of the Equilibrant, the 1st morning l awoke with aches all over but that has gone and l will just continue slowly as you say.
Will have to leave it at that as my (L) eye is starting to close.
Take Care,
Ros
Christine;
I am looking forward to your next blog entry.
Thanks,
Joyce
@Christine
As above.