Luctor et Emergo

Day 3 was Saturday August 16.
I did fairly well after the first rally of autoimmune attack. I recovered a bit the third day and the fourth day I was feeling back to baseline.
It was on Saturday that I got my second injection and boy did that hit home. After a couple of hours I was sick as I have ever been.
Right after the injection I went to lie down for my siesta before dinner. This is around 4:00 pm and we have dinner around 9:00 pm. 2 hours later I woke up with the feeling of some hot metal was streaming through my veins and slowly making it's way up. Just one side of my body. I went to use the bathroom and looked in the mirror to see that one side of my face was red and the other wasn't. Strange. And that's when the bone pain kicked in. Especially by right side, the side of the injection. I could not move my arms every movement caused excruciating pain. Than my right side started hurting even my neck ribs and bones of my skull. I could not do anything except lie there and cry in pain.

W had to help me up to use the bathroom. Have you ever noticed that the more sick you are and the more it is impossible for you to reach the toilet the more you need to go? What's up with that?

And with W helping me up I mean he had to pull my arms to get me into a sitting position and that hurt like hell. I screamed and he was so brave to just go on and ignore my screaming. I know he hates to hurt me but it had to be done.

After a bathroom shuffle trip he rubbed me with my medical marijuana rub that reliefs the muscle pain but not the bone pain. I could still make small movements like typing on my ipad like now and I send off a note to my doc. Who wrote me back to immediately go back a dose to 0.05 instead of 0.06. Who knew that 0.01 could make so much difference. Take lots of supplements like resveratrol, andrographis, etc and also liver, bile flow and detox medicine. He was happy that it was working, not happy I had such a reaction but that was what we expected so nothing new there.

After 3 days the bone pain became a bit less and I now had trouble walking. My spinal cord is horribly inflamed and it hurts like hell. This is becoming a problem with the bathroom visits I think we will have to start using the camping toilet again in my room.


Day 4 Wednesday August 20
Back to the 0.05ml injection. The reaction wasn't less though. Nope, it was the same and now the bone pain didn't leave me after day 3. it is still here and limiting my movements and making me go through my painkillers at an alarming rate. It's not that you can ask for more painkillers when these are gone. No the law in Oregon is very strict. Someone told me that these bone and muscle pain mimic exactly the late stage Lyme pains. Great. I hope the seizures stay far away from me!

Luckily it was the week that my Medical Marijuana supply was delivered. My growers give me a months worth of strains for free(that's how the Oregon MMJ law works)and if I need more I can buy it. But when you apply for your MMJ card you have to appoint a grower or grow your own. Luckily we have wonderful growers who go the extra mile with growing new strains. I also have a great supply of rubs, body butter, face elixer, those products are made by hand by a wonderful woman and they do help a lot for inflammation and other painful conditions. She also makes tincture that you can put a few drops under your tongue that works fabulous.
If you live in Oregon and want more information about this let me know and I'm happy to pass on email addresses.

I watched a review of the FireFly Vaporizer. I had my eye on it for about 1 year and they improved it throughout the year. So it was time to purchase one. It arrived in 3 days and sits now happily waiting till the battery is charged. If you're looking for a good review you have to read and watch Bud The Vape critic. Don't be turned off by his sunglasses, he actually knows his business.
Here's another review from the Vapor Review Blog.
It comes in 3 colors, gray, red and silver. I got the silver one.


In case you do not know what a vaporizer is, it's nothing like smoking. With vaporizing you are, in case of the FireFly, combusting the herbs and the vapor that it produces you inhale. With smoking MJ like the old fashioned way tobacco was involved, in vaporizing no such thing.
There are many vaporizers on the market, from portables to larger ones for use at home. if you happen to live in California or Colorado they also sell pens that look like an ecig that are already filled with your favorite strains. There are a great variety of strains suitable for a variety of aches and pains.

I prefer the vapor method over the ingesting method. With vaporizing you have more control over how much you will need, faster results. Ingesting can often takes 20 minutes before you notice anything plus if you have a bad reaction to it(like I did once) it can take hours to wear off. The tincture method where you place a concentrated drop under your tongue is also an excellent way of getting relief. There are now many strains around that produce little THC, the stuff that causes a 'high'. People who are in pain will first notice the pain relief and very little of the mood enhancing stuff.
Again if you would like more info let me know in the comments.

I hope I will be able to write some more the coming days. I just had my 5th injection as today it is Sunday August the 24.

Until than, be well and many blessings!

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Well, me writing a post in the second day means there is something to write about. ;-)

Right after I made a comment on FB that I was going to binge watch some old Lauren Bacall movies I was hit with a wave of 'not feeling so good'. I suddenly felt the urge to turn off my iPad, put the fan on high and lie very quiet, with earplugs in in a dark room.

Before I will write about what is going on I will let you in on my daily symptoms so you know it's not something out of the blue.

I have a reversed sleep cycle, meaning I fall asleep at 5 or 6:00 am and wake up at noon. And by falling asleep I literally mean 'falling' asleep. One moment I'm awake and next 'bang' someone turned off my light and I wake up in the same position as that I fell asleep in. Sometimes still wearing glasses and my ipad glaring into my face on the page of the book I was reading. I have an iPad stand next to my bed so I can read without holding it. if you're interested in knowing more about that let me know.

I usually eat some fruit hubby has in the fridge for me like at the moment it is bowls full of cubed ice cold watermelon. That hydrates me and sometimes I go back to sleep more relaxed now until 2:00pm. This is the time that I talk myself out of bed. Unless I'm so horribly ill that all I can so is crawl to the bathroom I demand of myself that I get out of bed even though it's just for a few minutes. It takes about an hour before the feeling that I'm about to die will fade. I'm afraid that if I don't get out of bed I will be in my last stage of ME. I need to get my blood circulation going I have a severe clotting problem. I sit in my wheelchair in my craft room and take my meds, read my email and do what are my responsibilities, paying bills online and shop at Amazon for our monthly delivery.
If I feel okay I might even work on some digital scrapbooking and edit my photos.

Now for my symptoms, everyone is different, my most painful symptom is the inflammation in my spinal cord and the viral stuff that is nibbling just outside my spinal cord. This pain is not even controlled by morphine unfortunately and there will be a time I will need stronger meds. The morphine I get I take in a combo, 1 tablet of Morphine with 1 mg of Alprasolam(Xanax) will put me out, sleep. If the pain is severe I only sleep for half an hour till and hour.
Next up is kidney and adrenal pain. Horrible horrible dull aching pain in the middle of my back. Kidneys and adrenals do not function well and other doctors always told me that adrenals can not hurt, but my current doc was the first to acknowledge that yes they can hurt.
Another pain is a deep down bone pain throughout my lower body which we first thought it had to do with the large lump on my hipbone and were afraid I had bone cancer but the large lump turned out to be bursitis on both hips. Making it impossible at times to find a spot that I can lie comfortable for a moment. When I have a auto-immune reaction, like now, that bone pain travels throughout my body and no bone not even my pinky toe is safe.
Other symptoms are migraines, tachycardia, NCS, which is a family member of POTS but neuro related. It stands for NeuroCardiogenic Syncope. At times when I turnover in bed I pass out. Which always scares the heck out of me because I don't know if I will wake up again.
My what I call minor symptoms are enlarged and painful lymphnodes, rashes(Lyme, mycoplasma, systemic yeast) and whatever virus or bacterial infection is not dormant at that moment in time. They do take turns.

That's enough information for now, maybe even too much.;-)

Late last night my arm where we injected the GCMaf began to hurt, nothing alarming it just hurt to move it. I felt horrible when I woke up this (for me) morning but that is nothing unusual that new or aggravated symptoms show themselves after that hour that I have been awake. I didn't want to think about it too much out of fear of overthinking it and feeling every little thing. But it made itself known this afternoon and while I was laying in the dark I could feel a heat spreading through my bones together with the pain I usually feel during an autoimmune reaction. W.(husband) did a little victory dance, he was happy I had a reaction. I was not so amused. I mean common, even on 0.05ml a reaction? I slowly began to feel more rotten, my ears are firered and feel like when you have a fever only I can't have fevers so this is my way. Slowly all my joints are starting to hurt and get red. My headache reduced itself to a dull ache and now at 11:00 pm I decided to write this while I still feel that I can. Lord knows what tomorrow will bring. Sipping a cup of ginger tea, taking my meds and will be back in bed in a minute.

Patricia asked me if I would do a write up about the genetic make-up that makes you a 'good responder'. I will happily do so when my body wants to cooperate. I can write small blurbs and that piece it together and post it.

Thanks for reading guys and I will write more soon, for now, be well and many blessings.

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We had a horrible last 6 months with lots of personal stress, husband health scares that needed attention and resulted in a sabbatical of 8 weeks in which I just went with the flow. I basically stopped all treatment, and only take my basic medication and supplements to keep me alive. I must say that I feel okay. Being occupied with treatments 24/7 is no way to live. Not for the ones who have severe ME, although everyone should make his own decision of course, for me it isn't. I want to live the rest of the life that I have left, in peace, experiencing joy and contentment. When you are going through hell using the newest fad treatment or fad diet, herxing your guts out every day, for me that is no way of living because I know deep down inside there is no cure or major improvement possible.

What I'm doing now is giving those things a chance that give me the least amount of side effects and hoping it will bring some improvement in the quality of my life. According to me genetic data I should be a good responder to GcMaff. Lets hope that's true. I don't want to go into too much details about the why and how of GcMaff. I know they preform miracles in Europe and wish I was well enough to travel to Swizterland and stay in one of their clinics for 3 weeks. if you want to know more about GcMaff, how it works, how to order it, please check out their website.


I have a few odds against me with taking GcMaff, in my daily medications are Morphine, Heparin and Hydrocortisone, 3 things that do now work well with GcMaff. Also 3 things I can not do without. I will lower the Hydrocortisone to 20mg and inject Heparin every other day and see how it goes. The dose you receive is for 8 weeks unless you start like me on a itty bitty shot first.
It's important to know your Nagalase and VitD level before you start.
Here are my test results. Nagalase was tested by dr. de Meirleir's RedLabs in Belgium so I have no idea how accurate they are but I take them for what it's worth.

RedLabs:
Elastase Espression: 490 0,00 - 150,00 ratio
soluble CD14: 4651 1430,00 - 2800,00 ng/ml
Nagalase Activity: 1.31 0,32-0,95 nmol/min.ml


This is what they write about the ME treatment protocol:
In ME/CFS GcMAF will rebuild the immune system, which will challenge dormant viruses.
They may fight back with a milder “Iris” type reaction.
For that reason start on a 0.03ml dose, and every 4 days increase the dose by 0.01ml.
When you reach a 0.1ml dose, you can go to a 0.25ml dose or more.


I started today on 0.03ml. I always have adverse reactions to any medication I take and just out of precaution I start low and go up.
His hubness did the honors, he already inject me daily with my other drugs of choice so he had no hesitation to put another needle in me, this time in my arm.
That was an hour ago, up to now I feel ok. A few missed heartbeats but that's hopefully out of anticipation. Most likely side effects people experience are the usual flu symptoms.

Speaking of my other drugs of choice that are injected these are the following in case you are interested in what I put into my body to stay alive.
A daily injection with Nexavir/b12/folinic acid/gluthathione. Especially the last is extremely important because I can not detox properly.

My oral list is limited at the moment, methformin(control blood sugar), Nystatin, Hydrocortisone, Advanced Methyl, L-Carnitine, Symbotics Candida Balance with Colostrum and Pro-biotics, Ganoderma, Compound GL(Chinese herbal compound for ME developed by Seven Forests), Ubiquinol, Vit.C 4000 -6000 mg, RX Omega-3 Factors EPA 400mg/DHA200mg, High VitB complex, Ribose.
I also have a HUGE bottle of oxygen that I use on a daily basis to get those gray cells working and improve the overall quality of what I have left. ;-)

There you have it. I will check back in with the next injection on Saturday or sooner if I have something to share about my reaction to GcMaff.

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