Luctor et Emergo

This is me in the image above. It's a Dutch saying; swimming against the tide.

On Saturday Nov. 9th I met Professor dr. de Meirleir, I already knew him from all his videos. After a clinical exam he diagnosed me with late stage Bartonella, Babesia and Borreliosis. Apparently I have a mask on my face and a typical rash on my abdomen with large red and white stripes that are typical for these infections. To say I was shocked is an understatement. I went to see him in the hope on new insight for treating my ME, never in a million years did I expect to come away with 3 new infections. Well, not really new, in fact the are old but new knowledge to me. He warned dme that oral antibiotics will not help in my case, the late stage will not react to oral abx, he said he was probably going to recommend abx infusions. He took about 1/3 of what I have in my veins to have it tested in what I assumed WPI's lab. He said we would do a phone follow up in 6 weeks after the results of the lab would be in and discuss treatment.

First sign something was not quite right was that in begin December I received a notice from my credit card for an alleged fraud attempt of over $5000. And did I know the marketing company Red Labs from Europe. No, I did not but the name sounded vaguely familiar. After a search online I found out is was dr. de Meirleir's lab in Belgium. He had taken my blood samples to Belgium to have it tested there without notifying me of such and presented me with a bill of $5000. Not that I had received an invoice, no, they just attempted to charge my credit card which I had given to pay dr. de Meirleir for the consult. I expected to receive an invoice from an American lab(WPI) so I could submit it to my insurance.
No way in hell is my insurance going to pay for a blood test from a foreign lab that could have been done here for a fraction of the price. I waited, I knew they would contact me because the charge was declined and yes the next day I received an invoice with a request to pay. I protested the fact that I was unaware that my blood was tested in Belgium plus I wanted them to remove the 25% Belgium tax that they added. As American citizens we do not have to pay European taxes. But no dice. They said if I didn't pay they would not release the results. So we paid. Too much stress to argue. We will file a form at the US tax office to get that tax back.
I was not a happy puppy.

After the 6 weeks were up I emailed and asked for a phone appointment. I got one. At 5:00 am. Not doable for me. My brain doesn't work at that time and I would not be able to ask questions let alone remember what he said. They forgot I was 9 hours behind them. I suggested 11:00 pm, midnight or even 1:00am Which would be 8, 9 or 10 in the morning their time. No, could not be done, that was prime time when they would see patients. WTF? Am I not a patient? No, because it was so problematic(?????), the phone consult was even off the table. I would now receive a written document with his interpretation of my test results and a treatment proposal. No opportunity to ask questions. Period. That was December. It's now end January and I'm still waiting.
I email every few days and I have read that he usually writes reports during the weekends so I could expect it on Monday, I waited till Wednesday and emailed again. Radio silence. Than this Monday I received an email that no they had not received my files yet and the Professor was out of town and was expected back next Monday. Meaning he will not be able to write that report coming weekend either so it will probably be the weekend after that or who knows maybe later. That will be about 3 months after I saw him, 14 weeks, 8 weeks later than the original phone consult was promised.

I'm depressed, grieving and livid at the same time. He said he thought I was very ill. One would erroneously think that if one is so seriously ill a treatment would be started quickly so the patient doesn't have to suffer any longer or even might get worse if we wait longer. Nothing can be further from the truth in my case.
It is and feels to me like they don't care anymore. I saw it in dr.P practice and now dr. de Meirleir, I feels like I am too old and too sick to book a success, to be worth it to bend over backwards for to get me the treatment I so long have waited for. I'm a mess, a too complicated case with a million of infections, viral and bacterial. It feels like they have lost hope for me. If that is their attitude then there must be some truth in it right? Maybe I am too ill to improve and is it just a matter of time. Who knows? They might be right.

I still think he is an excellent physician, and I know all he wants it get people well. What is going wrong in my case I have no clue. It's not that he is not used with dealing with seeing people in other countries, after all he travels to Norway to see patients there. Maybe it is the time difference that is playing a role. I can only hope that the patients he is planning to see this month or next in WPI will have a better experience than I have. And I hope he informs them that their blood will be tested in Red Labs, at a price.

Stay tuned for the next episode in where I will tell you how a flea product will help me get rid of my Systemic Yeast Infection.

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Going up or down? Is the title of another beautiful image of my friend Vlad @ Vladstudio. His wallpapers and images are free to use. Amazing artist.

The image seemed fitting for a new blog period. I know I have been absence for half a year, too much sadness and grief was going on in my life and while blogging is a good outlet you can't keep rehashing the same issues day after day, your readers will get fed up with it quickly. So I stuck to journaling for that time being and chose to keep my thoughts and rants quiet.

However lately I had to urge to blog again, couldn't find time. Isn't that an oxymoron? A chronic ill person, at home all day with nothing other to do than staying alive has no time to blog. I know! I was amazed and irritated with myself too. What no time? How is this possible? What on earth do you do on a day that you can't make time to blog, a 'friend' asked me.

So I started thinking about that and well, let me enlighten you, here is an account of my daily day activities.

I have a reversed sleep cycle(thank you adrenals) that I'm trying to correct, so I usually fall asleep at 5 or 6 AM. Now daylight is peeking through the curtains at 6:00 AM it's even more difficult to fall asleep. Trying to correct the sleep cycle mans I do go to bed at a reasonable time at 1:00 AM even though my cortisol is than sky high I try to ignore that and try to sleep in the hope that one day it will stick. I will wake around noon and will try to get out of bed. This means I had only 4 or 5 hours of non-restful sleep. Plagued by numbing pain in my joints I wake up frequently and need trips to the bathroom too because I suddenly seem to have the bladder the size of a peanut.

After I dragged myself out of bed and sit on my chair next to my desk that also serves as my medication station, I start by taking part of my meds(Hydrocortisone, supplements, heart homeopathics) and inject Heparin that I had prepared the night before, after that I inject my Growth Hormone and recover from this activity and shuffle to the bathroom. Sit down to wash face and other necessary parts of body that need cleaning, gurgle with special mouth water to kill bacteria that giving me a sore throat, need to be careful not to choke on mouth water and ingest it. Does not go down well. Brush teeth, pull on yoga pants and shirt and am more than exhausted by all this. Wonder if I should go back to bed, assessing my spoons for the the day, I decide to make the trip to the kitchen and be careful not to trip over the dogs who are excited to be left out of their crates and need to go out. Manage to get them to the yard where they turn around and stand before the door looking at me and why I don't come outside in the rain and play as well. Silly dogs. Now on to my frist aid to get my head cleared a bit, espresso!
In the meanwhile it is 1:30 AM.

I have a hospital bed in our family room so I can lie down there and still be part of the activities or watch tv. My small laptop(MacBookAir) is there and the dogs keep me company.
Check email, let puppy out to pee, go back to email, get up again to let pup out to pee. Good grief her bladder seems even smaller than mine! I get enough exercise today!
Get up to take rest of medication and another espresso. Because I can not stand at the counter to make breakfast I have a protein shake with special supplements for breakfast/lunch.(Thorne Research - MediClear Plus Formula).
Give dogs treat balls filled with their breakfast/lunch so they are busy for a while. Go back to laptop on the bed and do some shopping like new supplements, pet food, medication, food. I have been so lucky to have found a cook that cooks home style meals for the price of take out and I order each week healthy menus so W. only has to put them in the oven when he comes home.
Am exhausted, it's 3:30 by now.

Am irritated that it is 3:30 PM, need to be in bed by 4:00 PM to rest in order to be able to get up around 8:00 PM and have dinner and some conversation with husband. Had planned to do some blogging, work on my photos, take at least one photograph a day, start the design of a new prayerbead for a dear friend, write an email to my daughter and work on pup Miss Molly's blog. Who the hell am I kidding? Only myself.
Decide to go at least to the yard and sit on the bench and throw the chuck-it ball for the pups, no need for them to suffer from this illness as well, I suffer enough for half the world population as it is. Take phone with me to get the daily pic. Dogs are excited and run back and forth with the ball. Good, means they will be ready for afternoon nap. They know the drill though and are totally tuned in with my schedule. The days they do not go to Doggy Day Care to play with friends they will sleep in their crates till noon after W. has let them out before work. I'm truly blessed with 2 such lovely canines. They never ever wake me up or whine to be let out and play in the morning. After 20 minutes of some good exercise(for them) we go back inside and off to take a nap.

Gheez I'm exhausted as I lay my hurting body back down in my bed, grateful for the soft and comfy mattress toppers that relief some of the pain in my hips. As I drift off in my meditation and visualization I remember to say thanks for this being a good day. I was able to be up for 4 hours, partly lying down in the family room but still, awake for 4 hours. There are days that I don't even manage 1 hour.

Awake with a startle, confused, is it day or night? Do I have to get up or get back to sleep? Look at phone, it's 8:00 PM time for dinner and to get up. Pups are already out of their crates because W. is home. I didn't notice because I sleep with earplugs in deep deep silence except for the screaming sirenes in my ears because of the tinnitus.
It's always a struggle to wake up because I sleep so deeply in the afternoon, it's like a regular person would be woken up after 3 or 4 hours during their REM sleep and are forced to stay awake. W. knows he should not speak to me for the first 20 min or so because I and non-communicado and will rip his head off. After same meds cocktail as before only now added to the bunch a lovely B12/Gluthatione injection administered my the even so lovely W. in my butt, I start to come around a bit. Time for dinner, it's around 9:00 PM now, and some socializing and more puppy pee trips to the yard(W. not me)
Together we drink a wonderful espresso after dinner and if I feel ok we watch some tv. Around 11:00 PM W. goes off to his room for a good night sleep and takes the pups with him. I go to my room and either fall into bed or read some email and need to catch up on new research. I can not let a day go by without looking at research and blogs of fellow patient friends.

Use the Chi machine for half an hour, if I'm in much pain I might use the far infra red lamp as well. Do some acupressure, listen to visualizations stuff on my iPod or books on tape. Too exhausted and too much sensory overloaded to be able to blog. Not looking forward to the night. Take cocktail meds that should knock me out but it don't. At least it creates a sense of peace in my mind and body and I'm okay with that. Go over the things I am grateful for today, having medication is always one of them. Happy that I made it through another day.

And that was an account of a good day for me, hope you had a good one too!

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