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!

# # #

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.

# # #

Living with your limitations......
A couple of days ago I posted on a message board those wise words and how I (try) to live with that. I wrote wise things such as knowing what your limitations are and enjoying the moments that you’re able to see beyond your limitations and being content, or trying to be content with that.
All very inspirational and true, and if I read it know I think ‘oh gheez get of your high horse!’. Little did I know I had to eat my own words a few days later.

Well, I guess I _do_ try to live within my limitations, I mean I have to, what choice do I have? The other one is not to live at all and believe me sometimes that does feel like the better option. Like today for instance.

I don’t know if it’s the weather(22“ of snow and ice), the fact that my husband went out without me and even though the weather is horrible I would have welcomed getting out of the house even if it’s just for a few minutes and a quick coffee somewhere, or the fact this pain from the side effects of the HGH injections is gnawing away at me, or the fact my daughter just send me pictures of her buying her wedding dress with 2 complete strangers(at least to me).

I’m just so freaking mad and upset with this illness, why do _I_ have to live this way, if you will call this living. I’m at that point again that I look with envy at others who are going about their day to day stuff without realizing how privileged they are. I’m mad because I’m not able to hop on a plane and fly to Europe to go wedding dress shopping with my daughter. I mean how many time do you get the chance to do something special like that with your daughter? It’s a typical mother and daughter thing and again I’m absent. I’m mad because I feel I’ve let her down on this special and intimate occasion and so sad that we can’t share this milestone together. I’m jealous because she is sharing it with her mother-in-law instead of me. Not only am I missing out on so many things but so is she, this horrible illness is affecting all people in my life, not just me. When I saw her photos of trying on dresses my heart broke, it was THE one thing I wanted to do with her. I’m happy for her of course, she looks stunning in her dress, and I will have to get over this, it is what it is. Very little I can do about it.

I’m looking out of the window, my limited view of the world, it’s the same as it was 3 years ago when I moved in here, it’s hard to believe I have been living like a hermit for 3 years now. It’s hard to believe the dreams and plans I had when we moved here, drive, travel, swim, go to bookstore, browse little stuffy antique stores, go to cook-offs, see America, get my green card(check, did that), start a small business(ha ha ha, who was I kidding?), go to school, learn new things.

Who could have imagined that the moment we moved into this house the door to the outside would be locked for me and all I would see for the next 3 years would be the house across the street and our yard? Not me, that’s for sure! I was still fairly optimistic when we moved here, after all, I organized the whole move and everything. Hindsight, that probably did me in. When I started fainting and started to have black outs a few weeks after we moved I knew I was in trouble.

Over the years my world has shrunk to these 4 walls and I thank the Universe for my computer and reliable internet connection, it is my connection to the outside, without it I would be lost and probably wouldn’t survive.

Now we 2 days left till Christmas I do not feel ‘the spirit’ at all. In fact I am upset, hurt and more lonely than ever. It has been a rotten year and I sure hope the next one is going to be better.

On days like these I miss my beloved Gwennie, my Border Collie, my heart and therapy dog more than ever. In earlier days she was always there to let me cry in her fur, lick away my tears and give me comfort by molding her warm strong body into mine and we would lay on the bed until I felt better. Now she’s gone and I feel hopelessly lost and alone. The animal communicator told me months ago that Gwen thought I would not be able to cope with the loss of her. She was right, I can’t. I try, I promised her I would try with all my might but it’s so hard. I know a few people who will read this will shake their head and laugh about it, grieving so much about a dog! What a waste of time, get a new one! That’s alright, they don’t understand the soul and spirit connection I had with her.

I think I will take some rest and go to bed, maybe things will look better after a nap.

On the health front; I’m getting now my daily Human Growth Hormone injections which have the nice side effects that my hands and arms are numb and I have RSI in both arms, at night I wake up and can’t feel my arms or am able to open a bottle of water to take a sip or hold a cup. Picking up meds that I need to take is hopeless as well. I’m totally helpless and need to wake W. to give me my meds. But besides the numb feelings it hurts like hell. Muscles and small bones grow(growth hormone) and nerves in those areas get compressed and hurt.
But we hope it’s for a good cause because I need those Natural Killer Cells. Lets hope the other side effect such as LEUKEMIA passes me by. ;-(

That every other day W. gives me my ‘energy injections’ Lord knows why they’re called that they do not give me any energy at all!

Well, off to bed and sleep off this horrible feeling!

# # #

Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is possible.

I try to life like that and every now and than it turns around and slaps me into my face. It lets me know that I might indeed expect too much and that all that dreaming leads to nothing. But I am learning more and more every day how important it is to care myself as if I was my own best friend. And yes, I do risk a lot and no it’s not safe, but what choice do I have?

I have been floating between not conscious living and being aware of what is going on and actually feeling things.
After the test showed why I couldn’t make growth hormone and glutathione, we decided to start with Growth Hormone injections and later in the week ‘Energy’ injections. I put ‘Energy’ between quotes because the name doesn’t cover the work it does. It does everything BUT giving me energy.

W. my beloved mate, has been so brave to give me the injections, a guy who turns his head away as soon as there are needles shown on tv. I owe him big time! The Growth Hormone injections are easy peasy with a pen, the ‘energy’ injections need to be assimilated in a syringe and given with a ‘real’ needle every other day. They hurt like hell, but I will not tell him or show him because I don’t want him to be afraid of hurting me. It has to be done so I’ll just grind my teeth, take deep breaths and play ‘mind over matter’.

A few days into it and I started to have numb finger tips. I didn't think too much of it because I had numb soles of my feet for a while and we thought they were MS symptoms which we never really followed up on.

Than a few days later I started to get inflamed joints, and Carpal Tunnel Syndrome pains, by now my whole under arms and hands are numb, first right and now also left. Did some research(of course) and found that people with HIV and treated with also growth hormone before they start treatment also complained about the same side effects as I have. We need Growth Hormone to enhance the production of natural killer cells to fight of the infections.

Scary part is that these symptoms do not go always once you stop the injections. Your bones and muscles grow thanks to the growth hormone and thus leave less room for nerves and they get compressed. Jay, now I found a logical explanation and I start to wonder why my physician didn't warn me for this???

Seems not everyone who takes growth hormones has the same side effects, some people go up a ring size and a shoe size. That explains the 'growing pains'. Another side effect seems to be that people who took growth hormones developed Leukemia. Scary!

The ‘energy’ injections are Glutathione, B12, B6 and Folinic acid. Normally one would say that B12 and 6 should give energy, not so in my body. I’m detoxing heavily. I’m drinking as much as possible and hope to keep detox damage at bay.

Right now, typing with numb fingers is difficult if not painful. Imagine coming from the dentist with your jaw numb, but than in your underarms and hands... Got the picture?
I emailed dr. V. hope he has some really good ideas about this, at the moment my itty little bit quality of life that I had is going rapidly downwards. I need _someone_ to save me.

The image above is from my talented mac colleague Vlad. Vlad makes wonderful images, the low resolution versions are free for you to download for your desktop/wall paper. Please pay him a visit at Vlad's Studio's

# # #

The photo hasn’t anything to do with the topic, or maybe a little. I notice the beautiful fall colors outside again and that’s a major improvement of the last weeks. The piece of the puzzle that we, that is dr. Vosloo and I found was that tests showed that I had a double chromosome that makes an enzyme that is responsible for breaking down neurotransmitters like dopamine, epinephrine and norepinephrine, plus that I have a gene that makes that toxic accumulation in my body doesn’t get cleared and that explains my adverse reactions to drugs. And why I act so differently and strong to certain medications and supplements

The progesterone that I was taking made me severely depressed and cycling through severe moods. I was up with my thyroid medication to 5.0 mg and after a few days I started to have tachycardia, very rapid heart beats/fluttering up to 160 beats a minute with a low blood pressure. This is a very scary feeling because I know it can cause a cardiac arrest and there’s not much that you can do except wait it out and hope it will slow down. I try meditation and breathing techniques to stay calm and not freak out. I’m used to slow and irregular heart beats but these tachycardia were not good. W. insisted I go to ER but I know if I go to ER they will keep me in the hospital because of all my other symptoms and I will not make it home again.

Luckily it slowed down towards the morning and I was able to get some sleep. Next day I quit the Thyroid meds and gave my system some rest. After stopping the progesterone and the Thyroid meds I felt instantly better, mentally that is. No more crazy mood swings and dark suicidal thoughts, no more waking up crying with that extreme feeling of sadness.

Not that it’s all happy go lucky now, I’m still extremely sad about not being able to go out and have normal social contacts, do a course, go swimming or just out for a coffee with a girlfriend. But I can see the beautiful things again outside my window, my view on the outside world.

I did go out last Sunday, we went for a walk, or W. walked and I rode in my scooter to a beautiful park. The weather was gorgeous, our dog Lotte enjoyed being outdoors as well, she sat on my scooter on the way back, she’s 13 years old and gets tired easily ;-)
By Tuesday I was ill again, shivering with fever and chest pains, problems breathing and wouldn’t you know it, Pneumonia.

Dr.V. told me to use Colloidal Silver in my nebulizer because I can’t use antibiotics, that would wake up and start the kill off of the other nasty viruses in my body and it’s not ready for that yet. I have been using the nebulizer now for a few days and already feel the difference. I can breathe more easily, no chest pains and my thinking is a bit clearer plus the fever is gone.
It’s really a miracle substance this Colloidal Silver
If you ever decide to give it a try make sure you have the purest form that makes all the difference, otherwise you pay for a bottle that is not effective at all. I think that 'Sovereign Silver' is the best brand out there. They're not scared to publish their comparisons and have a really nice informative website. I buy my Colloidal SIlver at iherb.com though because they are way cheaper.

Sovereign Silver: http://www.natural-immunogenics.com
For supplements etc. http://www.iherb.com

# # #

When I started this blog I wanted to use it to poke fun at myself, my illness, a way to reflect on a life that is getting increasingly harder for me to live. It’s a mere existence than living. I do no longer have the feeling of contributing something useful to the world or at home for that matter. I used to get compliments or thank you’s for the small or big things I did even it was just as small as cooking a meal. Nowadays I have to ask for them, how pathetic is that. I do it but at the same time I know it will make me feel inadequate. I always thought it was normal to give each other compliments or thank someone for doing something for each other, it makes the other person feel good and loved. Me having to ask for a compliment or a thank you, what does that mean? Does it mean I’m not worthy of getting compliments or thank you’s or is it that what I do so insignificant that it doesn’t deserve or generate a compliment or thank you?

I wish I could do more, do BIG things, make a difference in someone’s life, have brilliant career, have interesting things to tell in the evening after the day comes to an end, but I don’t, I can’t. I can do small things, like cook a meal, have a cup of tea ready when my husband comes home and I expect the same recognition for that as if I did a BIG thing. I guess that’s were the discrepancy lies. Other people don’t recognize it as a major effort on my part. They don’t know that by doing that small thing for them I have given up the total energy I had available for that day and won’t be able to do anything else. Like writing my blog because I’m zapped of life’s juice.

It’s not that I didn’t mention this to them, it’s that they take something like having dinner at night for granted, it’s business as usual to them while for me it’s a major accomplishment. It has not always been this way, I used to get acknowledged for the little, small things I did, but somewhere down the road it has stopped and with that, a little bit of my self worth. I have been hurt by these little things more than I can tell, it makes me feel so inadequate and worthless. My soul and spirit is longing for that small acknowledgement of usefulness, than I make the mistake by asking for it. Which only makes it worse because I know it’s not freely given and meant but asked for and received on command.

When does a life stops being worth living? This life what I live is increasingly sad, full of grief, frustration, anger, pain, pain and pain and nowhere to escape to. I hate it when people tell me to look at the things that I still CAN do, yes I can still read a newspaper in parts, not that I remember a word what I have read 2 hours after that, yes I can still write my blog, email friends, pet my cats and every once in a while I go out to a place to drink coffee or to a shop.
Is that fulfilling, is that feeding my soul, makes my spirit soar? NO, I crave human contact, a good conversation, a giggle with a girlfriend, a gossip, a shoulder to cry on, a comforting hug, the fun of doing something together, creating, baking, cooking, a phone call just because I was thinking of you. An in depth contact, people my soul connects with. I miss working with people who are like minded, people I don’t have to explain why or what I mean or do, I miss interaction the sparring between friends, the jokes, the laughter, the crying. I’m lonely. Life passes me by, I try to connect with people online as much as possible, I try to help people online as much as I can even though my hands might hurt typing and I make a 100 errors a minute typing I don’t mind if it will make a difference in that person’s life.

But it still makes me feel like a hermit, something society has spit out. It hurts more than anything, it’s no the life I envisioned years ago. Even when I was ill than it didn’t cross my mind that I would become so depended on one person, that I wouldn’t be able to leave my house if that person wasn’t around, I didn’t foresee that I wouldn’t be able to shower by myself, that I would need help putting on my shoes or getting dressed. I always thought I would get a bit better, that my quality of life would improve but it hasn’t.
I never would have thought that I wouldn’t be able to walk around in my neighborhood, or through the park, that I wouldn’t be able to take public transport to get somewhere, that I can’t make a dr’s appointment and go on my own. I never imagined that if I needed something from the store I had to wait for weeks before I was able to get someone to get it for me and not run out to the store to get a roll of tape myself.

Me, the independent feminist, that girl who proudly burned her bra on the barricades in Paris, who took care of herself since she was a little girl, she who has a deep understanding of the universe and who can read people easily, that woman who is a highly sensitive person(HSP) an introvert but still craves human contact. That girl who was so assertive before it even was in fashion for women to be assertive, that girl who could do anything a boy could do. The girl who people loved to be around who everyone was always happy to see, who could dance night after night after night and never got tired of it, who loved to sing, to make music, who was a promising painter.....
That girl.. that woman... who is now depended on another person for her daily needs, where did she go to? I miss her so much, I crave for a little piece of the life that she had.

This life I have now is nothing but an empty shell of what it was before, my life was full, FUN, meaningful and active, filled with people who cared for each other and the world they lived in. If this is all there is for me and if it’s not getting any better I will have to find a way to make it more fulfilling, I will have to find things I can do to make myself feel useful. If not I’m afraid I will come to the conclusion that with all the pain it is not worth living.
Not only has this disease that’s called M.E/CFIDS taken my physical life, it also threatens to invade my mental and spiritual life.

I can not let that happen.

# # #

Just received an email from dr. V(finally, a reply to my email of 3 weeks ago!) that he received more test results from the 21 vials stuff.

The test is C4A level, a specific immune component and it is very high at 34,815 (Normal range is 0-2830).
So it shows my immune system is very active and this contributes to your symptoms.

I understand that part but WHY is my immune system so active? Is it because of the high Viral and Bacterial load?

What worries me is that dr.V says that it does not require immediate action. I wonder where he bases that on. Those figures to me look extremely high. I had nothing to compare my levels with, most studies have been done for Lyme disease and that doesn't generate such high levels.

I came across a poster session that has been done by dr.Shoemaker where he treats CFS patients with high amount of C4A with low doses of a drug called EPO or erythropoietin.
A poster session at a clinical meeting is for attendees who have information they want to share but whose data either were not submitted at all or else may not have been accepted as a clinical paper for presentation. You gather your data and put it on a large sheet of poster board and then exhibit it for a set period of time while other attendees mill around, hopefully reading your poster, all the while you stand there ready to answer questions.

<quote>
Erythropoietin (EPO) its function is a blood volume enhancer, is apparently also very effective at reducing C4a levels in inflammatory diseases. This lead to Dr. Shoemaker giving 60 CFS patients 8000 units of EPO five times over 15 days and then measuring their C4a and symptom levels.

The results had an interesting dichotomy; while the C4a levels in all the patients dropped, about 80% of the patients symptomatically improved while 20% did not. It turns out that the 20% who did not improve had exceptionally high C4a levels. Normal C4a levels are below 2830 ng/ml.

The responders dropped their C4a levels from 8300 to near normal, about 3200 ng/ml.

The non-responders initial levels were so high, about 19,500 ng/ml that even substantial improvement still left them with higher levels than the responders had at baseline (12,500 ng/ml). In short, it appeared that their C4a levels were too high for the EPO to give them relief at the dosage given.

<end quote>

So their levels about 19,500 are considered extremely high, compare my levels of 34,815 they must be enormous than.

What I did read, according to wiki is that C4a is a human gene part of the Complement component 4A. The Complement system is part of the larger immune system that is not adaptable and does not change over the course of an individual's lifetime; as such it belongs to the innate immune system. However, it can be recruited and brought into action by the adaptive immune system.

C4a is a Anaphylatoxin. Anaphylatoxin is able to trigger degranulation of (release of substances from) mast cells or basophils, which is an important part of the immune system in all kinds of inflammation and especially as part of defense against parasites. If the degranulation is too strong, it can cause allergic reactions.

I guess you can say that in my case degranulation is too strong.

Anyway, my body is so much depleted at the moment we need to get it into shape first before I can start treatment for the viral stuff.

For once, for one g*ddammned time I wished I got some medication of whatever that would make me feel a tiny tiny bit better. Just a small lift in my pain or exhaustion would be nice.

I’m sorry to say that I’m really really am getting depressed about it all and have a very negative feelings while I should think happy positive thoughts to encourage my healing.

I’ve got nothing left to pull it from.

# # #

Dr. V. and I made a basic plan to at least get my immune system in good condition. Apparently my ‘reverse’ T3 thyroid isn’t good and that’s why my Thyroid isn’t functioning either. I told him my experiences with taking Thyroid meds even though they were compounded for me, they gave me chest pains, irregular heart beats and even more Orthostatic Intolerance problems. I even tried to open the capsules and divide them up in 3 and fill new capsules but that also gave me the same side effects so I stopped taking them. The pharmacist told me that if I developed cardiac problems I should stop taking them and that’s what I did, against the wishes of my GP. In fact he was angry with me.

These dr’s do not understand that the function of my heart is not something I am prepared to mess with. It’s the motor of my body, if that stops working it’s over, surely they teach them that it med school?

But dr. V told me I was precribed the wrong thyroid meds, it should have been for my reverse T3 and it wasn’t.
We agreed to start at 2.5 mg and work up to 10 mg a day. At this moment I’m at 5.0 mg. It still gives me irregular heart beat, no chest pains at this time. I’m willing to se if it improves when my body is used to it more.

My medication at the moment looks like this:

5.0 mg of TRIIODO-L-Thyronine in the morning, can’t eat for 1 hour.

1/4 or 5 mg DHEA (need to build up to 1 tab of 5mg)

with breakfast:
20 mg Hydrocortisone
10 mg Loratedine
300 mg Aplha Lipoic Acid
4000 FU Nattokinase
80,000 units Serrapeptase
6 tabs Wobenzym
500 mg Quercetin
500 mg Bromelian
5000 UI Vit. D3
6 grams Vit.C
1 caps Probiotcs
4000 mg Super EPA
100 mg Ubiquinol
2 tabs Padma Basics


Before midday rest:
20 mg Hydrocortisone
4000 FU Nattokinase
80,000 units Serrapeptase
1/4 of 5 mg DHEA
30 mg Morphine Sulfate
0.5 mg Alprazolam

before dinner:
20 mg Hydrocortisone
300 mg Aplha Lipoic Acid
4000 FU Nattokinase
80,000 units Serrapeptase
6 tabs Wobenzym
500 mg Quercetin
500 mg Bromelian
5000 UI Vit. D3
6 grams Vit.C
4000 mg Super EPA
100 mg Ubiquinol
2 tabs Padma Basics

Before sleep:
75 mg Pregnenolone(need to build up to 200 mg)
10 mg Progesterone
30 mg Morphine Sulfate
1 mg Alprazolam

All this info is probably totally uninteresting for non-ME/CFIDS people, but for those who do have this rotten illness know how important it is for me to write this down so we can compare notes.

I need to see another physician to get my HGH(growth hormone) injections prescribed. It’s expensive so we’re hoping my insurance will cover it. My growth hormone was very low, it was in the 80’s and it should be in a normal range of 200-350.

Hmm... somehow I remember that someone I knew in the Netherlands lost a bunch of weight with HGH injections. That would be a nice side effect ;-)

I just wish there was something that for a minute would take away my pain, it’s driving me insane. I’m trying all kinds of tactics like zen meditation, visualization, Kabala pain technique, spa, massage, low current massage, heat, cold, nothing helps.

Next on my list is Marijuana, I’m so lucky to live in Oregon where medical Marijuana is free. They even help you find a dr. to get you a card so you can start using it. Since I don’t smoke, a nebulizer would be great. Will have to check that out.

# # #

Unfortunately today did not bring the good news I was hoping for.

The results of my 21 vials of blood were in and they didn’t sound good.

I tested positive for a large amount of bacterial and viral infections.

To name a few:
Cytomegalovirus - highly positive
Myoplasma Pneumonia - positive
Human Herpes Virus 6(HHV-6) - highly positive
Chlamydophila Pneumoniae IGG - very high positive
Chlamydophila Pneumoniae IGA - high positive
Epstein Barr Virus (EBV) the highest positive amount I ever had. Normal range is 1:10 mine is 1:11000!
Candida Albicans AB positive
Besides all this I also had a positive for Lyme.

One small positive was that I had some natural killer cells active, which means they are trying to fight the infections.

My white blood cell count was high as were my RDW’s. My Tromboplastin time was high but that has always been the case.

Cardio CRP was 20.7 were the normal range is <1.0 low cardiovascular risk, >10.0 persistent elevations represent non-cardiovascular inflammation. I guess we can safely say that I have a non-cardiovascular inflammation.

DHEA was not measurable. Normal range is 15-170, mine was <15.

Surprisingly my B12 was high 2000 where the normal upper range is 1100. I guess all those nebulized B12 paid off ;-)

Coagulation test was high at >4.0 H where ref.range should be below 4.0

Fibrogen was 576 H with a ref range of 175-425

IGF-I was low at 88 L with ref range of 92-190

Serotonin was too low but that’s nothing new and there’s now easy way of fixing it as I have serotonin syndrome.

Cortisol was low at <1.0 L. Normal peak should be around 20.6

The viral and bacteria infections scare me to death, I know what treatment lies ahead of me and I wonder if I will be able to survive it.
I know the kill off from the nasty buggers will release a large amount of toxins that will make you really really ill. i might have to look for a doctor with experience in treating multiple life-phase infectious agents.

Now I have to lie down, I came home vomiting after my IV and my heart is racing like it’s participating in Formula One, feel horrible instead of better and will do extensive research on what the heck they put in their cocktails that makes me so ill.

I have the gut feeling there will be a cancelation of my precious vacation.

# # #

This week has been a rotten week, leading up to my birthday and our planned long weekend vacation to finally get some relaxation and change of scenery. We had to cancel our vacation for 2 years in a row due to medical issues, both times it was W. who had the medical problems not me ;-) So I so hope that this year we will be able to have a short vacation. I booked the hotel and made arrangements for a cat sitter to come by and feed the kitties. Keeping my fingers crossed that tomorrow at my new appointment with dr. V all goes well and that I won’t get ill again from the IV.

My nights have been horrible, the pain is too much to bare and when the day comes I often wonder how I’m going to make it through the day. I dread going to bed at night because I know I have to go through the same torture again.

When W. takes me out shopping and we drink a coffee on a terrace I often look at the ‘normal’ people. How different their lives are, how much they take leading a normal life for granted. Putting on a coat by yourself, taking your keys and going out the door to a run to the supermarket are boring normal chores to them. I would give everything to be able to lead a normal boring life like that and not have my days consists out of health and medical issues. From the early morning to deep into the night my times is filled with doing research, writing and comparing notes with others online, discussing treatments etc.

It shouldn’t be necessary, wouldn’t it be great to be able to go to a doctor and say this is wrong with me, it hurts here and he says 'oh I know how to fix that!'. Up till now I always had to do the research while my brain is already fried, there are just too few doctors who are educated and have the knowledge to deal with the complexity of this illness. And I guess it’s not a popular field to be working in, not much money is to be made from us, there are not easy fixes just ongoing trial and error protocols.

I hope that one day I will be able to trust a doctor completely to have the knowledge to treat my illness, up till now I have only come across physicians with limited time and who become impatient if I do not react to a medication like they think I should or a totally other class physician is the one that fakes the knowledge, not knowing I’m fairly educated about my illness and know and read the latest research daily.
Those who fake the knowledge are the worsted, it’s such a disappointment if you can’t have a professional relationship with a physician, someone who you need to have on you medical team to manage your health.

I have had physicians call me a ‘train wreck’, call me ‘too much to handle’, and ‘too complex with too many symptoms’. Makes you wonder why they became physicians in the first place, if they wanted an easy job they should have applied at McDonalds to flip burgers.

# # #

Isn’t that the truth?
I know from experience, lying awake the whole fscking night, not being able to find a spot that does not generate heaps of pain and seeing the hands of the clock turn from midnight to dawn. Right when my despair is the deepest, light starts seeping through the blinds again. Funnily enough that’s not a comforting sight though. It means I have to face another rotten day, exhausted from pain, exhausted from grieving for a meaningful productive life lost, exhausted because all the joy has gone from my life. This is the hour that I often ask myself what’s the use of holding on, to keep on trying. It’s the hour that is the most dangerous, the loneliest hour I have ever experienced. The hour that you realize that in the end you are alone, it’s just you and you will have to comfort yourself or else you will give up and end it all, because all the years of relentless-never-ending pain, physical and mentally is getting to be much much more than you can take.

I know that if I can get past this hour I will pull the shattered pieces of my life together and will try to make it through another day.
Sometimes when earlier in the night my Morphine kicks in and I am able to fall a blissful short sleep, I wake up crying, tears dripping from my eyes, my pillow wet from tears because of the pain. My hip, shoulder, knee, feet every part of my body that touches my mattress is hurting so much, that I rather give natural birth to 10 babies than to face this much pain ever again. My husband, already used to my crying at night, absently half asleep reaches over to stroke my back trying to comfort me. I carefully sit up, taking care not to move too much because I will get dizzy and my orthostatic intolerance also works in bed and I will black out hen turning to another side. I try all relaxation techniques that I know of to fall asleep again, sometimes that works until I wake up again this time biting my pillow not to scream in pain and wake up hubby who needs his sleep because he has a difficult stressful job the next day. I get up, shuffle about, to the bathroom, clean my face and look at the person in the mirror with the haunted eyes and the black circles under her once sparkling blue eyes. She somehow looks familiar, like vague copy of someone I once knew. Who is she and what is she still doing here night after night after night. The soles of my feet are killing me, it is like walking on broken glass, when I finally reach my bed again I ponder on which side to lie on now. Can’t lie on my back because a disc in my lower back is pushing on some nerves that send jabs of burning pain down the back of my legs and so we start again on a side and maybe sleep for a hour until the pain is too much to bare again. I’ve tried to read but my vision is too blurred from exhaustion and my body needs sleep, if only the pain was gone or even less. I try to remember a night that I was able to sleep without waking up from pain, I can’t. Maybe 20 or so years ago when I still had a life, I can’t remember what it feels like to sleep for more than 2 or 3 hours in a row or waking up refreshed.
No-one knows where the pain comes from and even my morphine tablets do not touch the pain, they make me sleepy and make me fall asleep when the pain is still on a conscious level. Once it has reached my sub-conscious level in my sleep, I will notice it in my dreams as well.

Worsted aspect of dealing with so much pain night after night is that my spirit is depleted, my soul is dark and grieving, it’s like that part of my life has already left me and only my physical shell is still here. I noticed it more after my beloved doggy girlfriend died, she gave me a reason to get up in the morning, even though she had cancer she still wanted to be with me and go out. But in the end I saw her feeling like I feel right now. She wanted to be left alone and the pain that radiated from her eyes made me cry, still she didn’t want to leave me. She knew I needed her like she needed me. Now she’s gone, she’s free of pain, lucky girl.

I wonder if doctors know how our nights look like when the talk to us about your sleep habits. Go to bed at 10:00 PM they say. Your body needs to make cortisol between 10:00 PM and 2:00 PM they say, no coffee after 6:00 PM, no TV in your bedroom. Do they know about the monster of pain that haunts our nights? That by going to bed at 10:00 PM you’re inviting the monster to come over earlier so he can torture you even more? Have they ever been visited by the monster themselves? Do they know about the darkest hour before dawn? Maybe they should, maybe that would create more compassionate doctors, because that’s something we do not have enough of in our lives. Compassionate people, wether it be friends, children, spouses, family or doctors are much much needed. A day with a compassionate caring word, a hug, a cup of tea in bed, a pet on the arm or just a caring ‘is there anything I can do to make you feel better?’ is a better day and who knows maybe even a better night.

Well, no I did not feel miraculously energetic and so much better as they other ladies who were there also getting an IV claimed to be. Don’t know what is wrong with me but I obviously do not fit the picture. I was excited about the prospect of feeling better and was looking forward to this IV business.

The IV took 4 hours, I arrived at 9:00 and after taking my vitals, (which is always funny) they got the IV started after a few tries.
it’s funny because I have a set of extra cervical ribs in my neck, they push down my arteries and nerves and often is very painful. Because the squeeze my arteries i do not have a pule on either side of my arms. Nurses always seem to think I’m joking and just go ahead looking for a pulse but have to give up sooner or later. Even in my neck it’s difficult to find.

Halfway trough the I felt a horrible nasty headache coming up but attributed that to the warm and stuffy medical rooms and the bright TL lights. I’m very light sensitive, bright lights quickly give me a headache. Dr. V. came by a couple of times to check on me to make sure I was doing fine and the IV was not going too fast. It went slowly but steady. They provide you with snacks and drinks if you want to, the women across from me ordered a full lunch and their daughter came over and delivered their salads and sandwiches. By this time I was so nauseous that the smell of their sandwiches made me vomit. Do you have any idea how difficult it is to get up from a chair with an IV in your arm and hurry to the restroom?
I felt flustered and hot and my face was looking bright red, *make note to look up what exactly it is they put in these cocktails, could be something like B vitamins like Niacin because of the flustering. By now I was sweating and it felt like hot flashes in menopause! I just wanted to go home and lay down in my dark room and not move for at least 3 days! I admit it probably can be fun to chat with others about your illness and experience but the chatting and constant yapping and laughing drove me insane! Maybe I just not used to being around so many people anymore, after all I have spend almost 3 years home bound without seeing anyone.

I tried to read some but the letters were swimming on the page and a magazine is difficult to hold with one hand I discovered. W. called he was ready to pick me up but my IV was still going and I told him it would be another hour. He wasn’t happy, he had meetings scheduled and did plan for my IV to have a delay. Messed up his schedule. I felt anxious about that, it’s bad enough he needs to be my chauffeur and now I made him wait too. It’s all becoming so embarrassing and frustrating for me, not being able to do anything by myself.

Finally at 1:00 PM I was done, made a new appointment for over 2 weeks, paid my bill of $125 and shuffled after W. to the car.
I have never been so glad to see my home, usually it feels like I’m going back to prison and being locked up again but this time I was actually happy to be home ;-)

I lied down and than my joints started hurting, my eyes burned, I had muscle spasms, my head had a noise it like it had a whole marching band of trolls practicing in it. I took 2 Morphine tablets in the hope to be able to sleep some and maybe be better when I woke up.
I did sleep but didn’t wake up feeling better. In fact it was the same as the few days last week. I will have to discuss this with dr. V. I think there’s something in the IV that I react badly to. I have 2 weeks to recover before the next IV. ;-)

Today was my first visit with the new dr.
I went after much doubt and sleepless nights to the Fibromyalgia and Fatigue Center here in Portland. Why the doubt? Well in the CFS/ME message boards and mailing lists they do not get good reviews and people do not think highly of physicians who promise to cure you within 4 months or that you will see a 85% improvement in those 4 months. They were called charlatans, out to make a quick buck and a lot of other not so flattering names. Granted some of the complaints were legit, they do want you to use their supplements but I see that no different than modern western physicians who are being pushed my pharmaceutical companies to promote their medications. Lyrica anyone?

I decided to go anyway, my insurance will cover out-of-network charges I hope and the rest will be up to me. I will buy my own supplements.
I will take away from it what will be useful to me and ignore the rest. Main reason for changing my mind about the FFC clinic was also that they hired a new physician, a naturopath dr. V. I wanted to see him as they always have a better view of what goes on in a human body than ‘regular’ physician I think who only look at a symptom and how to get rid of it.

Dr.V was all I hoped him to be an more. We had an excellent conversation, he wasn’t put off by my long list of symptoms and he is from South Africa, which gives us a bond, we’re both immigrants and we actually can understand but not speak each others language. ;-)
We only talked about my history and how to start with the very basics and to creat a good foundation, pending my blood tests results.
I will go for an ‘nutritional and gluthatione’ IV coming Thursday. I had a little twinkle of hope when I left his office after a visit of 1 and a half hour.

I did have my blood test right away and I warned them for my low blood volume and ‘sticky blood’ which always results in 1 or 2 vials of very slow dropping in blood. After trying 4 times he finally hit a artery that was willing to give some blood and instead of the 10 vials dr. V ordered(they normally do 37) he even took 21. he was happy he managed to get so much and I was caught up in the moment. I should have protested at 10 but I ‘forgot’ how I feel after only giving 1 or 2 vials.

I barely made it home and have been so ill for the past 24 hours as I have never been. My whole body hurts and I can barely crawl to the bathroom to get a drink or pee. I’m angry with myself for letting my guards down, I should have stood up for myself and told them to stop because I was going to be ill. My body can take only so much abuse. Having low blood volume means your heart has to work even harder to pump the little blood available around and it can’t reach my brain in time and the results are fainting again.

I will tell them coming Thursday and it will NOT happen again. We’ll see how the IV goes on Thursday, will I feel miraculously energetic and happy again?

As you probably will have noticed the protocol I was about to embark on in February has not been an overwhelming success.
In the past few months I have gone through some very traumatic times and still am grieving very much.
The dog I mentioned in my earlier post, my therapy dog, my friend and confident, my sole reason for getting out off bed in the morning was diagnosed shortly after my last entry with Lymphoma cancer.
Her treatment consisted out of keeping her as comfortable and happy as possible because she already was in an advanced stage. Although I cared for her with all my love and it wasn’t any trouble at all it took all the energy I had and I was too exhausted to take good care of myself. I tried very hard to keep her alive and with me but she died on May 8th. I was the hardest thing I ever had to do and that I have ever experienced.

Pets unlike humans will give you unconditional love, no matter what you look like or how ill you are or how much you can or can not do.
She often was my sole comforter, I cried billions of buckets of tears in her fur during her 13 years with me. Shortly after she came to me as a puppy I became so ill that I had to stop working and together we went through a lot. She was always waiting for me when I came home form yet another useless dr’s visit, in tears and disappointed, her tail wagging and so happy to see me. I would make a cuppa tea and we would sit in the yard throwing a ball or frisbee and the world would seem okay for a while again. She kept me grounded and alive.
Now that she’s gone I feel lost, alone and no reason to get up anymore, there are no words enough to tell you how much I miss her. Everything that was wrong in my life she made right, now that she’s gone the things that were wrong present themselves with a raw reality and I have to face them alone, without her her comforting me.

When she was dying I promised her during our many human/dog conversations that I would do all that was in my power to get better, to improve my quality of life. She was holding on to life with all that she could because she didn’t want to leave me, I think she knew how much I needed and depended on her. I promised her and told her it was okay to let go that I would be alright and I would take care of myself.
And than she was gone.....
And I woke up the next day in tears, not knowing HOW on earth I had to take care of myself when there was absolutely no reason at all anymore to go on.

It has taken me almost 5 months to get the courage to see another physician and to give it another try. I’m still full of doubt, I don’t know why I keep trying, afraid to be disappointed again and also fully aware of the fact that this is probably going to be my last attempt to try yet another miracle cure. I’m so tired of all the miracle cures, to start over again and again and again..... But the alternative is giving up and I promised her I wouldn’t do that. So this is for you sweet face, I’m keeping my promise!