Thursday, March 31, 2011

It's Official

It is official.  I have Chronic Fatigue Syndrome.  I saw my cool new doctor today.  He is half regular medicine half holistic doctor.  He went through the CDC criteria with me and we decided together that I had CFS.  I've known this since last year I've just never had a doc that was willing to admit it, particularly in writing.  He just looked at me and said that I have all of the symptoms used to diagnose it and also many of the CDC 'extras' (symptoms that are common with CFS but not used to diagnose it).

He is tweaking my supplement list.  He said that my chiropractor did good putting me on the FM supplement protocol.  Between my supplements and meds I have not gotten as sick as most of the CFS patients he normally sees.

He is also having me consult with an infusion specialist at the same center.  This means I have to make the one hour trek back the office in a week and a half.  I also have to pay out of pocket for any IV treatment I decide to go forward with since insurance doesn't pay for any of it.  Since I've heard good things about this from other patients I'm willing to give it a go.

Thursday, March 24, 2011

Hammock Cam

video

My Trip To The Alternate Universe

Today I got to go to the local Social Security office.  It is two towns over from where I live.  A short trip which would save me the postage on the phone book sized ream of papers I needed to give them for my disability application.  I should have known that this was going to really be a trip into an alternate universe.

It started out innocently enough.  Hubby was driving and was sure he knew where it was and took me to the rather large official looking brick building in the middle of town.  We had to park on a side road since all the handicapped spaces were occupied which meant he had to push me up a hill in my wheelchair and I'm not light.  A fact he very quickly reminded me of.  He parked me under the directory while he went off to use the facilities.  This building looks very official.  Very cold.  Very brickie.  Even the inside is covered in brick.  However, even though this is indeed a government building it is the local government and not the federal government.  The Social Security office was somewhere else so it was back to the car.  My husband had to walk me backwards down the hill so that he didn't remove all the tread of the tires of the wheelchair with the brakes.  Not exactly handicapped friendly. 

After going around the block a few times we end up on the right street.  Of course this was after me holding the map upside down and not being to figure out where we were supposed to be going.  I think I'm going to have to turn in my navigator pin.  My brain fog is playing havoc with my map reading abilities.  Anyway, we are driving down the road looking for 192.  I'm calling out the numbers on my side of the car, "90", "150".  I look to the left and bingo "214".  Hey what happened to the last 75 numbers?  We doubled back which was hard to do in the heavy traffic.  I'm trying to find numbers on the buildings.  Most of them don't have any.  Then both of us look ahead at the strip mall.  No.  It can't be.  Am I in an episode of The Simpsons?  Yes, the Social Security office is in a local strip mall sandwiched between the Super 88 Asian Market and a Dunkin Donuts shop.  I was on the floor of the car I was laughing so hard.

Hubby dropped me off at the front door and I toddled inside.  I found myself standing in a medium sized foyer with customer windows all around the perimeter.  All but three had corrugated metal shutters locked down over them.  There were large red signs that said "All Visitors Must Sign In First"  with arrows pointing to an electronic kiosk.  To my left were rows and rows of empty chairs.  To my right a couple speaking was speaking rapidly in Spanish to someone behind one of the open customer service windows.

As is typical of a goverment facility we were surrounded by signs:
"You are being watched on CCTV"
"No Admitance"
"No Cell Phones"
Some were more fun though:
"No Yelling."
"Do Not Use Offensive Language." 
"This is a Federal Facility and Federal Laws Apply."
"No Standing While Talking with the Service Representative."


I wandered over to the kiosk feeling kind of the like the guy that is refused service until he takes a number even though no one else is in the store.  I got through the overly simple menu choices to which I had to opt for "Other" since "Dropping Off Paperwork" wasn't on the menu.  The kiosk then printed out my number "A71" and hubby and I got to choose our seats in the waiting area while the screen informed us that they were currently serving customer "A70".  Can you see the irony in this???  I kept thinking I really really wanted "The Boy From Ipanema" to play over the intercom and my life would be complete.





If I weren't so tired I would still be laughing hysterically.

The Spanish couple finally finished and left.  Hubby and I sat and watched the TV screen for a while.  Suddenly the number flipped to "A71" and a loud male voice came over the intercom "Will customer number A71 please come to Reception Window number 2."  So we walked 50 feet to our right, past the guy who was sitting by himself behind Reception Window number 1 and sat down.  I told Receptionist #2 I had already applied on line and was just dropping off my paperwork.  He was a young man but I could already see the zombiness of government work had already started sucking his brains out.  He looked at me with a completely expressionless face and asked for my social security number and then my name.  He then asked if this was my 'medical evidence' which I told him yes.  It was more but you don't want to disturb these guys.  If you don't play by the rules things get weird fast.  So I lied and didn't tell him about the video and letters I had included.  I'll let the reviewer worry about that.  I slide the packet over to him.  He told me he would give it to the right person and that they would send me my originals back.  I didn't need them but hey don't upset them.  There are rules you know.  He told me I was all set and I thanked him.  If he has a working brain cell left in there he would make a great poker player.

We got out to the parking lot and I burst out laughing again.  This was so surreal.  It was so government issue.  Don't let them hear you laugh though.  The government zombies might come after you.  They need your brains after all.

Monday, March 21, 2011

Phoenix Rising

Phoenix Rising is one of my favorite information sites for CFS and XMRV.  It has been down on and off for a couple of weeks now.  I finally managed to look at it again today only to discover it has been totally redesigned.  It looks fabulous.  If you have some time and want to read some informative articles go check it out.

Friday, March 18, 2011

Target Practice

It dawned on me this week that I had lost my way.  I feel like that cow that keeps wandering over to the next grass patch and then another and another and when I finally look up I can't figure out where the barn got to.  I need to find my way back.  To use some tattered old phrases: I need to keep my eyes on the prize, keep my goals in sight, keep reaching for the brass ring.

To what am I referring, you might ask?  In the effort to prove myself ill to the doctors, to prove that I'm not lying to the insurance company, to show the world that I am indeed sick, I forgot that my first and foremost goal is to get better or at least not make myself sicker.

I've become so caught up in my battle with lawyers and insurance companies, so worried about finances and specialist referrals and too emotionally involved with cranky doctors that want nothing to do with a patient with a chronic unfixable illness never mind a patient with a legal case pending, that I forgot that my main goal, NAY, my PRIMARY goal, is to do things to take care of myself and help me feel better.  There may not be a cure but there sure as hell is a way to make myself worse.

I have been eating crappy.  I have been sleeping crappy.  I have been tolerating too much pain.  I haven't been doing enough nice things for myself.  I haven't been resting enough.  I haven't been making myself comfortable enough.  I am much too angry.  I have been doubting myself.  I have even been doubting my own reality.

So I decided this week that I'm going to beat this thing or at least work towards a more functional Ms Baffled.  This is going to be a slow process.  It is going to take a while.  I have to loose some of my ego.  I have to let go of toxic people particularly if they happen to be doctors.  Despite what anyone says I AM sick.  If they don't want to take care of me, then I will have to take care of me.  I need to let go of being a 'good wife'.  I am sick and hubby is going to have to make peace with this new reality without taking it out on me or the family.

So what is the plan so far?
Eat organic food.
Eat at least one piece of raw fruit every day.
Eat at least one vegetable every day.
Eat whole grains.
No wheat.  No cheating.
Get help balancing my daily food choices from a nutritionist.
Get help with my supplements from my new holistic doc.
Get more help dealing with cranky pants hubby.
Get out in the sun as much as possible without getting a sunburn.
No cleaning, picking up or cooking if I'm pooped.  Even if hubby has a hissy fit.
Learn to crochet.
Take up drawing again.  I want to do pastels.
Take a break from whatever I am doing at least every hour if not more often.  Set a timer if need be.
If I'm tired stop and go lie down.  No pushing.  Its not worth it.  It will still be there later.
Find some medication to help improve the quality of my sleep.
Let go and let God.  I can't control most things in life.  I should know this by now.
Take pain meds when in pain.  I don't need to suffer.
Make my bed more comfortable.
Make my desk more comfortable.
Look into getting myself a laptop.
Watch something funny before I go to bed.
Do something each day to intentionally take care of myself.  Be selfish.

So what did I do today?
When I got tired I stopped typing up the document for the lawyer even though it wasn't done.  I saved it as is and moved away from the desk and lay down on the couch for a well deserved rest.

I made a new friend over a pot of tea.  She is a friend of a friend and we had been talking on Facebook for months now.  We finally decided that we had to get together and have a good chat.  She came over for an hour so that I wouldn't get tired out from the visit.  And she brought scones and Irish butter.  We had a delightful time.

After she left I was tired but it was the first warm sunny day here in New England after a dreary overly long winter.  So I went out in the yard and laid down in the hammock in the sun.  I even took my top off so that I could have more skin contact with the sunlight.  I figured that I'm having so much trouble with low vitamin D levels I would treat myself to an old fashioned sun bath.  It was delicious having the sun warm my skin.  I could feel it sinking in and warming my joints.  Even my hands and feet were warm for a change.

I also got to deeply relax.  I watched the crinkled brown leaves of last year tenaciously hang on to the branches of the old maple tree as they rustled in the afternoon breeze.  I heard the call of the first red wing blackbirds returning from the never never to reinhabit the neighborhood for the summer.  I watched as the pair of local hawks found a thermal and circled ever higher until they were smaller than the period at the end of this sentence.  And much to my delight I spotted the first Robin of spring.   It is official.  Spring has arrived.  When I finally arose from the hammock I was in a good mood.  Finally happy with the day.

Wednesday, March 16, 2011

Turning Point

I am crossing my finger and hoping that this post doesn't jinx things but I think my medical care might have just taken a turn for the better.  I visited my primary today and he is going to try several things to help me out. 
  • He is writing me a letter for my SSD case stating that I'm too sick to work and also the plans for future treatment. 
  • He gave me some samples of one of my meds after he found out I no longer have prescription coverage so I don't have to pay for so many pills.  The med I'm on is $5 a pill!  Ugh! 
  • He is loath to put me on antidepressants because, in his words "you have a reactive depression" (translation: you're bummed out cuz you're ill) and you are having bad reactions to medications.  So another talk with my shrink but I think meds are going to be off the table for the immediate future. 
  • He is going to contact the MDVIP centers of excellence and see if he can hook up with someone at Mayo or Cleveland to help him with my diagnosis and treatment. 
  • He is also putting together a packet of information to send to Dr. Anthony Karmoroff.  Yes, The Dr. Karmoroff!  One of the most well known CFS docs on the planet!  Turns out he is taking new patients.  Not sure when I'll actually get to see him and I have to go through a screening process first.  But hey, my doc is willing to give this a try!
Even though I'm still cooked from this weird crash I'm happy again.  I have some small smidgen of hope that someone out there will help me or at least listen to me and take me seriously.  I didn't realize how much the blows from the rheumatologist and the neuropsych testing had hurt me.  How can I let these people affect me so much?  I don't think they realize how much they are screwing with people's lives.  I'm so sick that I just spent the last three days asleep in bed and both of these people said that they didn't see why I shouldn't be able to work.  Okay.  I'm still pissed off about that.  This was supposed to be a happy post.

I'm feeling so much better this evening mood wise.  I'm still baked.  I still can't think straight.  I'm still so tired my vision is blurred.  But I have hope again.  Maybe things will start improving.  I'm also looking forward to seeing my new doc at the Marino Center.  I should be getting a follow up with him soon.  Yay!

Tuesday, March 15, 2011

Ms Bobblehead

I could model for a CFS bobblehead.  It was a another bad day today.  I slept most of the day and spent a lot of time in bed with my eyes closed listening to the radio.  Despite all of this when I got up at 6pm in search of food my head started bobing almost immediately.  I'm tired and brain fogged and wondering if I'll be able to shower before the doctor tomorrow.  At this rate I'll be going there all stinky.  About time really.  He still hasn't seen me at my worst and with my specialists all telling me that I should be fine to work I should go there totally messed up.  I'm getting annoyed with this whole thing.  I'm sure the stress of my legal case isn't helping my health at all.  I'll be glad when it is all settled and I can get back to getting better.

Monday, March 14, 2011

A Day of Bliss

I watched a wonderful documentary last night on Netflix called The Nature of Existence.  I loved it and already want to watch it again.  It is about one man's search for meaning.  He travels all over the world asking all manner of people about the meaning of life and the search for the divine.  Apart from this being a perfect movie for a chronic chick one phrase stuck with me. 

"Just surrender." 
It has been bouncing around in my head since I heard it.  Today I surrendered to my crash.  I finally stopped fighting my body and climbed into bed with a pile of pillows, my prayer shawl, my wristies and turned the radio on.  Although I was freezing cold I cracked the window open so that I could hear the wind in the trees and the birds that are finally returning from their warm adventures in southern realms.  The sun started breaking up the clouds so I just laid their enjoying the sun, the clouds, the birds, the wind and the slow drawl of NPR.  I was happy.  Since I was propped up I got to see a slightly different view out of my window which was an added treat.  I spent a wonderful afternoon just being and it was glorious.

Sunday, March 13, 2011

One of Those Days

Yes, it has been one of those days.  I thought this might happen since I did too much yesterday.  I'm having a PEM (post exertional malaise) day. 

It all started out innocently enough.   A shower (a luxury these days), a trip to the chiropractor for an adjustment.  I was supposed to just go home and throw dinner in the crockpot and kick back for the afternoon.  That was until I received an email from my lawyer.  This needed to be answered.  And of course since I'm a perfectionist and I want to make damn sure I get my story straight (the insurance company accused me of changing my story) this meant I had to dig out all of my notes.  And I do mean all.  I had date books, symptom lists, file folders full of clinical notes from my various doctors (yes, I have all of the clinical notes from every single doc I've been to for this) scattered all over the desk.  Of course with my brain messed up this also meant I got distracted and went off on tangents.  Tracing notes of symptoms when I was supposed to be finding dates and vice versa.  It took me three hours to compose this email.  I should have stopped at two.  By the time the third hour hit I could no longer type.   I had to write and erase, write and erase, ....  over and over and it still wasn't coming out right.  I finally gave up.  Added in an apology paragraph and let the typos roll. 

It wasn't a particularly long email.  I've written longer blog posts.  I was probably already cooked from my 'very busy' morning.  I was crashed by the end though.  I couldn't even focus my eyes anymore.  And then?  Hubby pitch a fit because I hadn't made dinner.  I told him that I had to email the lawyer and that took precedence.  He went out in a huff to get take out.  We ate dinner in silence. 

So what happened today?  I slept most of the day.  I could only stay awake for 2-3 hours at a stretch and then I had to sleep again.  I'm tired now and this is early for me.  It is only 1am and I'm usually up until 3am.  At least I'm finally sitting up again and able to focus and type.  Meh.  And I woke up in such a good mood and now I'm cranky and have a sore throat.  Wish I had some good news.  I just don't.  I'm looking forward to when all this LTD crap is over with and I can get back to trying to get better.

BTW, weird side note: I've been taking my temp for my new doc every day.  It has gone up by several tenths of a degree since I had that cortisone shot the other day.  Also my night sweats have shown up again.  Curiouser.  At least I'm sleeping better.  It is amazing how well I sleep with the right pain meds in me.

Friday, March 11, 2011

Depression and CFS

I got into a discussion with my shrink with regards to depression.  I flat out asked her if, in her professional opinion, I was depressed (I know I'm having issues trusting my own inner voice but that is for another post).  She told me that from her viewpoint the symptoms of CFS and depression overlap too much for her to make an accurate diagnosis.   In her eyes I have a lot of the symptoms for depression. 

Anyway, we got into the semantics of tiredness vs lack of energy.  I told her that in my experience so far I spend most of the day not tired.  I just can't do anything.  I don't have the energy to move my muscles or body around but I'm not tired and don't wish to go to bed.  I don't do the things I enjoy because I can't not because I've lost interest.  I still love watching movies, reading books and surfing the net.  I'm also still interested in skating and even got a subscription to icenetwork.  I would love to socialize but I've missed several events because I've been crashed the day of or it is at the wrong time of day for me.  It isn't like I'm hiding in my house as a choice.  I'm stuck here because if I go out I end up in bed for days recovering. 

I'm also not upset most days.  I have the occasional blue mood but I never can tell if that is mental or some weird chemical reaction since my body chemistry is so out of whack.  It won't be the first time I have a couple of depressed days right before my period starts (turns out it is due to low vit B levels).  This has plagued me for years long before I came down with CFS.  I was even on B6 for a while to help with this and of course the B vitamins are typically low in CFS patients so why wouldn't my mood be a body chemistry thing and not a brain chemistry thing?  The CDC even warns against antidepressant use for CFS patients due to side effects that often make the CFS worse than it already is. 

I keep telling my doc that I'm in a foul mood because I'm in pain.  The pain keeps me up at night so I'm extra tired as well as having no energy.  I have always been grouchy when I'm tired.  So in my humble non medical doctor opinion I'm in a bad mood because of pain not because of depression.  Give me some pain meds and I'm betting I'll be in a much better mood.

So how can CFS and depression be differentiated?  I'm not sure I have a good answer for this.  To my mind I am fine most of the time with some occassional bad days thrown in, which I can fully understand since this is a thoroughly horrible illness.  However, I now have my doc, a cognitive psych person and my own shrink telling me that I must be depressed to some degree.  I don't have a good argument against this other than telling them "No. I'm not depressed".  At that, my shrink started asking me what my resistance is to the diagnosis.  Talk about a catch 22.  I recognize this as some sort of logical trap but I can't remember the origination.

I don't want to cave on this one.  I'm in a happy mood today now that my shoulder pain has subsided.  I can even use my arm again.  I am not depressed, damn it!!  I just can't seem to find the words to convince the docs.  I feel like the uppity women who used to get locked up in the asylums when they didn't behave in a way that was socially acceptable but were told they had mental illness.  Why are these people so hell bent on slapping this label on me? 

On another note, when I read through the CDC entry on depression it said that the diagnosis depends upon the patient's self reported symptoms.  What irony!!  My LTD won't take my word for it that I have CFS but they will if I have a diagnosis for depression even though they are both self reported.  WTF?!?

And in case you are wondering, according to the CDC website on CFS "Research shows that CFS is not a form of psychiatric illness or depression. "

BTW, I just found the Beck Depression Survey which is a self assessment tool and guess what?  I'm not depressed!!  I'll print this out and take it to my shrink next week.  Put that in your Freudian cigar and smoke it!

Thursday, March 10, 2011

The Shot Heard 'Round the World

That is a bit of an exaggeration but hey I wish I could have screamed that loud.

I went to my wonderful orthopedist this morning.  My right shoulder has been horribly painful and my arm is getting to the point where it is almost useless.  If I apply any sort of pressure, such as trying to dress or towel myself off after a shower, pain shoots down my arm into my hand.  The shoulder is in constant pain and I have to be very careful how I move it.  It can not under any circumstances be bumped! 

It took three weeks but I finally got in to see him.  Of course he took x-rays.  Turns out the calcium deposit in my right shoulder has reappeared and the left one has gone away completely (we'll get back to the left shoulder later).   I also have spurs and calcification of my cervical vertebrae (over the course of my life I have done much injury to my neck including several cases of bad whiplash and getting hit in the head with a tree - yes you read that right a whole tree but that is another story). 

His immediate evaluation is that the calcium deposit has caused inflammation in the rotator cuff and bicep tendon and the neck issues are causing the nightly numbness and pain in my right arm, hand and fingers.  We then discussed having a cortisone shot in the shoulder joint.  I had these before and they aren't pleasant.  I was also concerned with side effects since I am now horribly sensitive to medications.  After talking about CFS and the treatment I just said F^&* it.  "I want the pain to stop.  NOW!" 

I do remember this shot not being pleasant but with the FM flare and CFS joint pain active holly crap did this hurt.  I had to bite my lip so that a string of expletives weren't heard in the next county.  I don't remember this hurting so badly last time.  I remember pinching and heat but I tolerated the pain okay.  This time was torture.  I hope the dam shot lasts more than three weeks this time.  I think I'm going to try and get a lot of massage in the area to try to get the inflammation down while the pain killer is still working.

As for the left side, I guess the pain I have there is only from the FM/CFS, which is a bummer.  It means that the Celebrex is limited in its effectiveness.  I wonder if I can double the dose.  I wonder if my tummy can handle it.  I think my doc is trying to get me off the stuff.  I just need something so that I can sleep.  My hips and shoulders hurt so bad some days they all keep me awake.

Anyway, I have to get off the computer now.  My right shoulder is screaming at me.  It is not happy with me at all today and I don't blame it one bit.

Sunday, March 6, 2011

Too Much Information

My blog underwent a little redesign today.  Note the tabs along the top edge of my blog!  I've moved useful links and paper references to the other pages.  There were just too many links along the left edge of my blog and I wanted a better way to arrange them so I've moved the sciency stuff onto the other pages.  The main page is devoted to blogalishousness.

I've added lots of paper references and even a video from the Opportunistic Infection Conference that was just held here in Boston.  I'll be moving Dr. Komoroff's lecture over there as soon the Mass CFIDS site is working again.

I just want to mention that I am very pro XMRV but I've included an anti XMRV link because it is from the aforementioned conference.  I want you to be able to see for yourself what people are doing with the research money.  When I started watching the video of the conference I knew we were in trouble when the section was hosted by a guy from London (UK is the source of PACE trial and is pushing for CBT/GET therapies).  Hopefully the tides will turn soon.

Please check out Dr. Deckoff-Jones blog, X-Rx.  She has written a scathing review of the conference and brought up some very disturbing allegations.

Saturday, March 5, 2011

Newsflash!

Great articles in the Wall Street Journal on CFS:

http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html?mod=wsj_share_facebook

http://online.wsj.com/article/SB10001424052748704507404576179031979295592.html?mod=wsj_share_facebook

http://blogs.wsj.com/health/2011/02/17/xmrv-study-shows-virus-can-cause-persistent-infection-in-monkeys/

Apparently there is also an article in the NYT on the definition of CFS but you have to log in to read it so I haven't seen it.  I refuse to sign in to read news articles.  Here is the link if you want to take a look:
https://myaccount.nytimes.com/auth/login?URI=http://www.nytimes.com/2011/03/08/health/research/08fatigue.html&OQ=_rQ3D1

Addendum: Here is a working link to the NYT article: http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?_r=4&hpw

I just found a great Wiki site on XMRV
http://www.mecfsforums.com/wiki/Main_Page
tons of information burried on this site.  Great list of papers.  The case definitions need a bit of work.  Don't forget this is a Wiki site so the accuracy of the information isn't guaranteed.

This talk on XMRV was just given last weekend during the conference on retroviruses in Boston:
http://app2.capitalreach.com/esp1204/servlet/tc?c=10164&cn=retro&s=20445&&dp=player.jsp&e=13744&mediaType=podiumVideo

The first issue of FM-Chronic Pain Report by the National Fibromyalgia Association:
http://www.nfmcpa.org/media/newsletters/issue1/

Fighting Back

My poem The Blizzard was just published at FightingFatigue.org!  And they published a lovely winter photo along with it.  Thanks!!

Friday, March 4, 2011

The Marino Center

Turns out even though I live near Boston, which is one of the medical hubs of the universe, there are almost no medical doctors (MDs) that treat CFS.  I have found four total.  One of whom is the famous Dr. Anthony Karmoroff.  I actually called his office to see if I could get an appointment.  I have to submit a referral letter from my primary along with my primary's observations and why he thinks I have CFS.  The grand doc will review this information and determine if I am worthy to be seen by him.   They have no idea when this actually might be but my guess is at least six months but hey I'm not in a rush or horribly sick or anything. 

The second most famous person around here is Dr. Don Goldenberg who is actually a fibromyalgia specialist.  Again at least a six month wait and I heard it is one of those talk to my interns first and I will only see you for ten minutes afterwards things.  Is that worth a six month wait?

The other two docs aren't famous and probably have equally long wait times for visits.  Hence I ended up at the Marino Center.  It is an alternate healing center that specializes in Integrative Medicine and has an excellent reputation. 

The doc I visited Tuesday not only has an MD but is board certified as a holistic medicine practitioner and an examiner (I'm guessing this is post mortem).   He had an impressive array of certificates on his wall. 

Weird visit though.  I was cooked by the time I got there for my appointment.  I had done too much that morning, ate, showered, dressed all in the same day and then traveled on top of it.  So between my now encroaching ADD with a side of brain fog and his penchant for interrupting, the conversation got derailed more times than I could keep track of.  I know I left important stuff out but hey that is why I take a packet along with me that includes my monthly symptom lists, all prior docs notes, all test results and a current med/supplement list.    If he really reads this stuff he'll get a good idea of how my symptoms have progressed and changed over time and what I've been tested for so far despite my brain failing to follow our convoluted conversation.

The Marino Center is a collection of practitioners that actually talk with each other and coordinate care.  This includes traditional western medicine, nutrition, supplements, chelation, IV therapy, acupuncture, massage, and probably stuff I've never heard of yet.  After talking with him for an hour and then the exam during which my notorious head bobbing started, he recommended that I see my neurologist in addition to his running a cortisol panel for stress and more blood tests to see how I was metabolizing vitamin D.  I'm also supposed to be taking my temp twice a day every day for a week but I keep forgetting.  I will be meeting with him in a couple of weeks once all the test results are in.

My husband loves this guy.  I've become cynical after the last couple of disasters with the endocrinologist disappearing off the face of the planet for over two weeks and the rheumetologist refusing to diagnose me on paper.  Between my cynicism and my brain fog, I'm waiting to see what happens before I decide I like this guy. 

I forgot to talk with him regarding his thoughts on XMRV.  I would like to get this blood test done.  I just heard that Quest labs just developed a 2 hour PCR that accurately detects XMRV.  This is a huge improvement over the current method that takes over 30 days.  However, I don't know if it is available yet.  I believe they just applied for a patent.  I'll have to check and get back to you on that.  However, I digress.... back to the Marino doc

He does believe in CFS and FM.  People tend to come to him after they can't find anyone else to treat them.  I still don't quite know what to expect from him either in his treatment method or even his belief system regarding this illness.  He was talking about stress causing my adrenals to crap out and making my body susceptible to this illness.  He was also talking about my body not metabolizing vitamin D correctly.  However, I'm not sure how he is going to treat either of these issues.  I'm venturing into new territory here.   He even mentioned behavioral ophthalmology which I am still researching. 

Anyway, I left five more vials of blood in his lab.  I have four test tubes I have to spit into at specific times of the day and then freeze and then post via FedEx.  And, I have to take my body temp 3 hours after I get up and then six hours after I get up for five days running and send him the numbers.  I have no idea why.  I guess I'll know more when I see him again.  This time I'll rest up first so that maybe our conversation will go a little smoother or at least I can attempt to keep it on track.

Thursday, March 3, 2011

Quote of the Day

Me:  "The virologist I saw doesn't believe in chronic fatigue."
My new doc:  "This isn't a religion."

Tuesday, March 1, 2011

F##ked Again

Once again I have been fucked over by a doctor.  This time it is the high ranking, top of the line, rheumetologist at Tufts.  My lawyer called her today.  Turns out she is back pedaling on my Fibromyalgia diagnosis. 

When I was in the exam room with her, she tested all of my tender points and put me through the roof with several of them, most of them were sore but tolerable and a few had no reaction.  She looked at me and said "you have fibromyalgia."  My husband was there he witnessed this so I'm not making it up or having to rely on my faulty memory.  She then proceeded to tell me that she didn't do CFS so couldn't comment on that.  She also told me that she wouldn't be taking me on as a patient and that I would have to find another rhuemetologist to treat me.  I asked her if she knew any CFS doctors in the area and she told me that she would check.  When we talked on the phone she told me my lab test results: low D and no parvovirus and that she didn't know any CFS docs.  When I got the letter there was this wishy washy statement:
"Based on the constellation of signs and symptoms, she has some features that are consistent with fibromyalgia.  As far as chronic fatigue syndrome, some of her symptoms can be associated with this.  There is some overlap between the two and the treatment is usually mutifactorial.  It is a diagnosis of exclusion."
The letter was your basic "cover my ass" variety.  She had included stuff in it that didn't happen, such as claiming she went over all the side effects and hazards of taking Celebrex (never happened), messed up some of my symptoms and then no solid diagnosis of FM.

Today suddenly she says that she can't tell if I have fibromyalgia from just one exam.  She would need to see me over a course of time to come to that diagnosis but she won't take me on as a patient.  She told my lawyer that she doesn't get involved in legal cases.

So the trip in to Boston, the wait for the appointment, the wait for the diagnosis all was a colossal waste of time.  I now have to find another rheumetologist that will actually keep me on as a patient, properly diagnose me and be willing to write a letter saying that I have fibromyalgia.