Ataxia

As I have already mentioned, Dr Komaroff my consulting CFS/ME doctor retired last year and my treating CFS/ME left the state.  In my search for a new doctor I was on the Mass CFIDS site and ran into a great page on the new SSD requirements for proof of disability with a CFS/ME diagnosis.  Under the list of things to monitor was 'ataxia'.  I had never heard of this so after consulting Dr. Google I ended up on the National Ataxia Foundation website and EUREKA!!  There was a list of my neuro symptoms!  All of them! With a few extras I had no idea were related!

• Balance and coordination are affected first
• Incoordination of hands, arms, and legs
• Slurring of speech
• Wide-based gait
• Difficulty with writing and eating
• Slow eye movements

The is also overactive bladder, crying jags, heart issues and low blood pressure.  All of which happen to me.

Woohoo!  I have a name!  Even more exciting I discovered that the top Ataxia Unit is near me at Mass General Hospital!  The head of the department is THE Ataxia guy in the US.  They have treatments for the neuro crap I've been dealing with for four years now and they specialize in the treatment of diseases of the brain.  I am SO excited!  I just printed out the referral forms and health history forms.  I also printed out the Stanford study that shows brain inflammation is part of CFS/ME Now I just hope that it won't be a six month wait to get in there.

Twisted Logic

I've been having a really difficult time with my sister for the last two years.  It finally culminated, at my therapist's urging, in cutting off all contact with her for my own piece of mind and general health.  Of course she is still giving my mother heartburn and information wends its way back around to me.
For some reason she doesn't think I want to get better.  I finally found out why, I'm not seeing the type of doctor that she approves of.  She doesn't like the fact that I'm being a "know it all" regarding my illness and doesn't agree with my treatment plan, not that she actually knows what it is. Sis wants me to travel six hours to see the "real" doctor in the Adirondacks because she "cured" herself of CFS and fibro with magnets and aura cleansing.  The world famous CFS doctor and the functional medicine doctor that are treating me that have been treating actual patients for decades obviously don't know what they are doing.  And because I choose to see them instead of her "real" doctor I obviously don't want to get better.

To take this at face value, I would never EVER hired her as a patient advocate.  She never researched my illness, never mind treatments (there are none).  She is taking this holistic doctor's word on her self diagnosis and treatment plan.  She doesn't understand that there are degrees of severity of the illness.  The doctor might well have had real CFS.  People that contract the mild form often go into remission after two years.  The doctor might have treated herself with her magnets etc for two years and POOF she is cured.  My sister really doesn't have a grip on the notion of correlation doesn't equal causation.  She doesn't know that both of my CFS treating docs told me that I was the worst case of CFS that either of them had treated, although via the internet I do personally know of patients that are worse than I am.

I looked into the "real" doctor to see what treatments she offered.  In the same paragraph she has EMF blocking plan along with a mega spectrum photon generator to re-energize your cells.  What the what!?!?!?  The photon generator is basically a lighted neon bulb that you rub on your body giving yourself a mild electric shock, i.e. it generates an EMF field and you are giving yourself an electric shock.  It even says to wear rubber gloves when using it to insulate yourself from shocks.  Talk about quackery.  And I'm supposed to hop in a car and drive six hours to see this shyster?

Never mind the hocky treatment, there is such a thing as respect for the patient, patient rights, etc.  Even if she had picked out the best CFS/ME doctors in the country she has no right to second guess me on my own treatment.  She definitely has no right to say that I don't want to get better just because I'm seeing doctors that she doesn't approve of.  She doesn't have a right to come up with her own treatment plan and then get angry when I refuse it.  This is all sorts of wrong.

However, to get at the core of this issue you have to realize that this is my sister's belief system.  She has swallowed the wishful thinking philosophy hook line and sinker.  That whole If You Just Have the Correct Thoughts Then Wonderful Things Will Manifest In Your Life thing is her core belief system.  Me and my illness flies in the face of that.  I'm not wishing hard enough.  I'm must not really want to get better because I'm still sick.  Chronic illness doesn't fit in neatly with this philosophy.  The patient must have done something wrong to manifest this illness.  They must have thought the wrong thoughts because health hasn't returned.  This is why I walked away from this philosophy years ago.  Something didn't quite sit right with me about it.  Sorry Wayne Dyer.  This leads to blaming the patient for becoming sick and staying sick because they obviously did something wrong.

Buddhism makes more sense to me.  Things change.  Things always change.  Life is impermanence.  We have been given this gift of a body and this life for a brief moment in time.  We are lucky when it works well and even lucky when it breaks.  Wait and things will change again.  Suffering comes from wanting.  Suffering comes from yearning.  Let go of wanting and suffering will end.

As you can see we have a huge chasm between our core belief systems and this underlies her comments.  If she accepts that I have a chronic illness then she has to change her belief system.  No one reacts well to a challenge to their core belief system.   It is the framework with which we understand the world and therefore sacred to a degree.  Some people can alter that framework after much thought and deliberation.  Others can not and will deny reality rather than change their beliefs.  I am coming to believe that Sis sits in the later camp.  Her beliefs are right: reality is wrong.

Because these comments are coming from her belief system they can't be argued with.  She has had a rough life and her belief system is holding her afloat right now.  All be it the wishful thinking isn't working for her either.  There will be no discussion or reasoning with her.  Sometimes all you can do is walk away.

Bad Day in Marriage Land

I hate days like this.  Hubs  is in a foul mood.  Nothing I can do about it.  He is angry that my medical care is interfering with his life.  He is also angry that this all could have been avoided.  His response: "you really need to get a new doctor".


Yup, it was another trip into medical stupid land.  Two weeks ago I developed a very small tic-tac shaped clear bump on my big toe.  It appeared to be full of fluid.  It was tiny.  It didn't hurt.  It didn't itch.  I decided to leave it alone and see what happened.  Last week I saw my doc for a routine follow up for my CFS.  Catch up on bloodwork, symptom lists and meds.  I asked him to look at my toe.  The tic-tac had now resolved into three small lumps that had a dark red almost black centers.  He took out his magnifying glasses and declared that they were bugs bites.  More specifically "breakfast, lunch and dinner."  Cute.  He decided to leave them alone since they weren't bothering me.


Over the course of this past week, more clear lumps showed up until a dime sized patch was covered with them.  The entire area was red.  Hubs said the toe was slightly swollen.  My masseuse, who used to be a dermatology nurse, said it looked like an allergic reaction and asked me if I had been in contact with anything weird.  Why, yes.  I had walked through the garage barefoot a few days back but I'm pretty sure the lump was there before I did that.  Timelines really aren't my thing since becoming sick.  I get events out of order all the time and can never figure out how many days pass in between events.  Anyway...


Yesterday, some of the clear lumps filled with pus.  Great.  Think its time to take care of this.  I call the doc and talk to the nurse.  Doc decides that he wants me to go see a dermatologist rather than go back in to see him.  The nurse emails me the contact info late in the day right as I'm going out the door to see my chiropractor.  There is no way I can call during office hours.  I'll have to wait until tomorrow.


Overnight, I discover a second patch in between my toes.  This one is a vicious red and it looks like some of the lumps have burst and bled.  Can't really tell because it is facing away from me and I'm not enough of a contortionist to really get a good look at it.  All I can tell for sure is that there is a dime sized patch of small bumps there as well.  So today I call the dermatologist my doc wants me to go see.  He is booked until October and his colleagues are booked through the end of July.  Well, the way this situation is rapidly deteriorating that isn't an option.  I call my doc's office back and tell the substitute receptionist that I can't get in to see the dermatologist.  She talked to my doc and then got back to me.  The regular office manager will try and set up an appointment for me with a dermatologist on Monday.  However, she has been out since her daughter is getting married and substitute doesn't think she will get to it on Monday but just call back if I don't hear from by the end of the day.


I promptly feel myself descending into medical hell.  I have a rash that is spreading and probably infected and a doc that wants to foist me off on a specialist rather than reassessing the situation and giving me drugs so that this doesn't get worse.  Next week is July 4th which is a HUGE holiday and poof it is on Wednesday.  People are either taking the entire week off or Wednesday, Thursday, Friday off.  I have my IV on Monday and I'm going to VT on Tuesday night for some unknown period of time.  If I go to a specialist I need 1) a facility that is wheelchair accessible (no kidding this is a problem in lots of places) 2) a driver 3) a person to push my wheelchair.  I also have to schedule the visit around the other doc visits I have and preferably in the afternoon so that I'm not a mumbling idiot when I go see them.  Both hubs and kid are now working full time, my regular ride is going to NH for the entire week and I've already tapped my alternate ride for my IV on Monday.  I'm basically f'ed.


After hubs gets home from work, this idea pops into my head.  Lets head up to the walk in clinic.  It is after hours so they can't call my doc.  The regularly treat skin rashes or at least stabilize them so they don't get worse before you can see your regular doc.  They will prob give me drugs to treat this. If it is really bad they have a podiatrist on staff who might be on call (if it comes to that but I doubt it is that serious).


So already grumpy hubs drives me two towns over to the walk in clinic.  The staff is great but the check-in is kind of stupid.  I have to go back and forth between the triage nurse and the check-in desk.  Hubs goes back out into the waiting room first chance he gets.  For some reason he doesn't like waiting with me in doctors offices.  I get triaged, signed in and make my co-pay.  It is about 30 mins between walking in the door and actually seeing a medical professional.  Not too bad.  It is a quiet night.


I finally see a nurse practitioner.  She used to work for my doc many years ago.  She remembers my name and vaguely remembers me.  I look totally different than I used to and I'm in my wheelchair so I'm not too surprised that I didn't look that familiar.  Anyway, she tells me that yes indeed I had an active skin infection and the patch between my toes looks like a fungal infection.  So I get scrips for cream for the fungal infection and antibiotics for the skin infection.  Woohoo!!  Hurdle number one overcome!  No trips to the ER this weekend!


I check out.  We head over to Walgreens at the end of the road to get the scrips filled.  I have never EVER used them for my scrips before.  I use a local mom and pop pharmacy which of course is now closed.  I give hubs the scrips and my Blue Cross card.  I settle into the truck to read my Kindle.  Much later he emerges and asks me for my ExpressScrips card.  Turns out I don't have it on me.  Of course I'm too muddled up in the head to explain the BCBS covers our meds.  I have an unusual plan.  ExpressScrips is for buying pills through the mail not from the pharmacy.  Now he really gets his panties in a bunch; grouses at me for not having my card and stomps back into the pharmacy to cancel the transaction.


As we get back on the road home, I start telling him the details of our health plan and how every time I go to a new pharmacy they try to use the wrong card because they don't get too many BCBS accounts that cover meds.  They never believe me until they call the companies themselves.  So now Mr. Crankpants decides he wants food.  Screw the pharmacy.  So we stop in Longhorn which is on the way home.  It is another half hour wait.  He plays with his phone the whole time.  He is pissed.  We eat in silence.  Only swapping a few words here and there.  He texts his friends more than he talks to me.  Food done, we head home.


As we leave the parking lot, I tell him that I have accounts at CVS as well as at Smith Drug.  We should be able to go to ether place and they should have my records.  He drives towards our house.  He is in lala pissed off land and drives right by the turn that would take us to the pharmacies.  I say "drugs" and point down the road we just missed and he grunts.  He goes the long way round to a different Walgreens.  When we are parked I ask him to look in his wallet since he should have the drug card himself.  He does.  I tell him if there are any problems just pay for the stuff and I can get reimbursed from BCBS after the fact.  Why in hell he didn't just go to CVS down the road is beyond me.


He goes in and it is a long wait.  I'm too messed up to read by this point so I watch some kids in the parking lot hang out.  One of them lights off a bunch of firecrackers and they scatter.  Next thing I know the cops are there.  The manager is outside.  Everyone is grousing about the kids.  Hubs finally emerges and tells me that Walgreens no longer takes BCBS.  WTF!?!  He just had to pay $50 for my meds.  No biggie really.  If it were car parts he wouldn't even blink.  Instead he is even angrier.  He had to pay FIFTY DOLLARS for that!  OMG!  I would have had to pay more than that if I ended up in the ER over the weekend from the infection getting worse.  But no.  He is in full tilt crank mode.


We get to the house and he has to help me inside.  I can no longer walk and I'm doing a very poor job with my gross motor skills.  Not quite headbobbing but damn close.  He leaves me on the bench in the vestibule and disappears into the garage.  Now I need my walker to get around at this point.  I need someone to get it for me since I can't walk.   I'm not even sure where it is in the house.  He doesn't come back in.  I hear the floor jack.  This means he is fixing cars and won't be back into the house.  I'm stuck on the bench.  I have to sit and wait until I'm able to get up and hobble around until I find my walker.


He spends the next several hours outside.  He is ANGRY.  He finally comes in only to discover the pile of stinky dishes he has been avoiding all week so now he has to do dishes.  Something he hates. I think it has become a symbol of my disability.  He gets really really angry when he has to do housework.  So now he is stomping around the kitchen.


This whole thing reminds me of some horrible YouTube vids called Tourette's Guy.  He is this man who has Tourette's Syndrome and anger issues.  He will do something which gets him angry and then he does something stupid because he is angry which usually results in him injuring himself.  During the entire debacle he is swearing his head off (which is the Tourette's).  CJ often reminds me of him.  He gets angry and acts out of anger or because he isn't thinking clearly because he is angry and the whole situation just escalates until he is walking around swearing.  If he just calmed down and thought things through it wouldn't get nearly as bad.


OMG I hate days like this.  There is nothing I can do about them.  I can't fix him.  This is his own crap he needs to deal with.  I have no idea what to do with him so I ignore him.  He finally tells me that he is going to bed because he is getting up early in the morning.  I ask him where he is going and when he is going to be home.  He has set up a little boys getaway for tomorrow without telling me about it.  He is going out first thing in the morning to get his noisy car so that he can put it on his trailer and take it to a car show tomorrow night.  I'm going to be at home all by myself for most of the day.  I remind him that we were supposed to go to the farmer's market tomorrow noontime.  He explodes.  I HATE going there!  IT is the SAME thing every week!  It is SO repetitious!


I just look at him "you are spending all day tomorrow doing car stuff and you can't spend 45mins taking me around the market?  Besides you like what I cook with what I get from there."


Silence.  He is in bed at this point so he just turns out the lights.  I give him a lame kiss and leave him to stew in his own juices.  I wish he enjoyed his time with me.  Instead I just seem to be a huge inconvenience to him.  I'm in the way.  I have to be wheeled around.  I can't do stuff on my own.  I have to be helped.  Makes me wonder about our relationship.  It also makes me glad that I'm dragging him into my next counciling session.


I've done the best I can.  I've got medicine to stop this infection from turning into something serious. I've managed to do this outside of work hours so that no one has to take time off.  I've avoided a potential trip to the ER.


I will probably still go see the dermatologist since this fungal infection seems to be spreading all over my body rather than going away.  My toe isn't the first place it has shown up but it is the first time it turned into a full blown skin infection.  At least going to the dermatologist is no longer a time sensitive thing and it won't matter if I have to wait a couple of weeks.


Hubs on the other hand is on his own.  I don't know how to fix him.  He is broken.  He doesn't/won't appreciate the fact that disaster has been averted.  He is angry that he had to take me to the clinic.  He is angry that he had to spend money on meds.  He is angry that he has to take me to the market tomorrow.   And to think two days ago he was a happy camper and was actually kind and understanding and willing to help me out....  I just don't get the mood swings.  And you know what the kicker is to this whole thing.  He will NOT ever apologize to me about it.  Don't ya just love marriage!?!

My First Cavity

since contracting CFS.  Yup.  My first trip to the dentist for tooth repair since getting sick.  Needless to say I was scared.  The cavity was in a tooth that is on the side of my head with THE most sensitive nerve in my face.  My tongue tip often tingles and my nose itches from it.  I don't get numbness I get the itchies from it and the dental hygenist has to numb my gums before she can clean my teeth.  Yup.  Hypersensitive nerve plus cavity not a good combination.

I had three things going for me: 1) the tooth didn't actually hurt yet, 2) the cavity was in a tooth that had broken off to the gum line and reconstructed almost 15 years ago (i.e. it was mostly dead material) and 3) lots of friends and resources on the internet that could give me pointers.

So here is how the visit went.

I had selected this new dentist a few months ago based on their website claims that they fully cater to patients' needs.  They have an office that is wheelchair accessible and a staff that dotes on the customers.

I had my teeth cleaned there a few months ago and was treated really well by the staff even after I told them about my hokey illness.  They took every care that I was comfortable, not in any pain and even that I wasn't dizzy or too hot.

Today I went in and explained that my illness was neurologic and that anything that affected my central nervous system would cause problems.  I told them that I shouldn't have adrenaline/epinephrine in the numbing shot which they accomodated without question.  They also gave me additional pain killer/numbing agent so that I wouldn't feel any pain.  I told them about the nerve problem.

The dentist came in and gave me lots of time for the shot to take effect.  Then he told me that he was going to go slow and if I had any pain at all to just indicate that to him and he would stop immediately.  As he drilled away at the tooth, initially everything was fine.  He did hit a tender spot and I winced and he immediately pulled out of my mouth.  He asked me what was going on and what I was feeling.  I told him it was pain.  He gave the shot a few more minutes to take hold and he might have changed to a smaller drill head and started drilling again with no problems.  He accidentally hit the painful place twice more and figured out exactly where the painful spot was and avoided it for the rest of the procedure.

They used a high suction device to continuously remove the debris from my mouth.  I didn't swallow anything nasty at any time during my visit.

The new filling was made out of cosmetic composite so I have a white filling that is indistinguishable from my tooth and no mercury at all in it!  Woohoo!!

He also made sure my dental appliance fit over my reshaped tooth.  The real trick will be trying to wear it tonight now that the shot has worn off.  Honestly, I couldn't really say if the appliance fit well since the right side of my head was numb by that point.

I came home and immediately took several activated charcoal caps to remove any toxins from my system including any mercury from the old tooth.  I will be drinking some clay after I finish this post.  It is hard to time these since they have to be between meals and pills so that they don't interact with the meds rendering them useless.

So now, ten hours later, I'm doing fine.  I'm not too wiped out (but that may change tomorrow).  My mouth doesn't hurt much and I only have a slight dull ache in my tooth.  I don't need pain meds.  I even forgot about it and mistakenly chewed on it when I had my evening snack.  Ouch!  It did hurt but not nearly as bad as I worried about.

All in all not a bad experience.  I'm happy with my new dentist.  They listened to me and were respectful of my needs.  I came away with a filling I was happy with with minimal disturbance to my CFS riddled body.

Pros/Cons Docs

Just had an interesting conversation with my shrink.  The whole thing got started because I went on a rant about my doc instigating the possible revocation of my driver's license.  After I got the rant over with and we got through the discussion of what to do next, we moved on to whether I should keep my doctor or not.  Of course my husband wants me to dump him.  Hubs reasoning is simple: 1) hubs has no tolerance for indecision and the "wait and see" mentality and 2) the concierge service is expensive.

First let me explain concierge medicine since this is integral to the rest of the post.  I pay an annual fee of $1500 so that I get access to my doctor 24/7.  I get half hour appointments often same day.  I always see him and not a nurse.  I can call him directly after hours without having to go through an answering service.  I have his email.  Blue Cross pays for the medical services, appointments and tests.  What I pay for is access and continuance of care.  And yes, it is elitist and classist and I had to really think hard about it before I signed up years ago.

So here is my pros and cons list with regard to my doctor.  This exercise is to help me decide whether I should stay with him or not.

Pros:

• He believes in CFS/ME.  He knows it is real.  He doesn't doubt me or any of my symptoms.  This is HUGE!!!  
• He treats me well and listens to what I have to say (most times).
• He tolerates my use of alternative medicines.
• I always see him even for little problems, which leads to a continuance of care that I haven't had with other practitioners where I get foisted off on the nurse practitioner.
• I have half hour appointments.  Longer if need be.
• I can talk with him on the telephone or via email for off hour care or problems.
• He is good about giving me referrals I ask for.
• He is good about adjusting meds for my weird reactions.
• I've been with him for years so he knows me prior to CFS.  He knows I'm not faking or seeking attention or a slacker.
• He is good about giving me med samples if he has them so I don't have to pay for new meds that may not work for me.
• He is good about filling out forms for work, insurance, legal and anything else.
• He is good about dealing with my lawyer and writing affidavits.
• I can get same day or next day appointments.
• I don't have to wait. He runs on time.
• He is a pretty good physician.
• He is genuinely concerned about my physical and mental health.
• He is part of the Winchester Hospital network which is one of the most highly rated hospitals in my area.  My hospital care has been top notch.
• I have access to Tufts Medical in Boston with some of the best specialist  in the area.

Cons:

• He has a wait and see attitude.  If I want something done I have to push.  It took my husband going in with me for me to get to see a virologist when I first became sick.  This lead to me not seeing the specialist in Boston until I was sick for six months.  This is a BAD problem for me since I tend to not push for things but I know how to deal with this problem and it isn't insurmountable.  I just have to grow a pair.
• He sometimes skips tests that later would have helped diagnose/document problems.
• He always says my gait is fine even if I am using a walker to get around with and can't walk unsupported.  Not sure why this keeps happening.  
• He forgets to set up referrals, particularly if he doesn't think they are important but they are ones I've requested.  I have to call to remind them.
• He doesn't like prescribing pain meds.  I will have to find a pain clinic if things take a turn for the worse.
• He didn't discuss the potential revocation of my driver's license with me first.  I wouldn't be so angry if he had explained his reasoning first, instead of my finding out from the copy of the placard application.
• It costs $1500 to see him.

So I guess I'm staying with him.  At least for now.  The cons aren't that bad and I have work arounds for most of them.  I get to much good stuff by staying with him even if I do have to pay extra.  Hubs is just going to have to accept it.

The Good Doctor

I went to see one of the world's experts on CFS today.  He said I have CFS, they don't know what causes it and there is no cure.

Now normally I would have a very sarcastic response to this.  However, my main purpose in going to see him was to confirm my diagnosis.  That way the insurance companies can go suck it.  I now have three doctors on record saying I have CFS.  One of them being an expert from Harvard Medical School.  So yay me!!

The second reason I went there was to see if he had any other tricks up his sleeve for treatments that my other docs haven't tried yet.  He took blood samples and will make recommendations based on the results.  I have a follow up appointment with him in February and should expect a letter with the test results in roughly two weeks.

However,  by the end of the visit I had the distinct impression that he is not a patient centered practice.  The biggest clue was that he had no idea what veinous insufficiency is and how it might relate to my dizzy spells and almost passing out during the tilt table test.  I've read in the literature that this is common and somehow related to CFS but he didn't know anything about it.  Don't get me wrong.  He is really nice.  He listened to everything I had to say.  He asked lots of pertinent questions but his main purpose in life is research work into CFS markers.  He sees patients so that he can find candidates to donate blood for his research work.

This only mildly bothers me.  I went there expecting this so it wasn't too much of a surprise but I do know of one patient that was infuriated by this.  She had gone there expecting help with her symptoms and didn't come away with anything.  Myself?  I signed a waver and left him with several extra vials of blood and a spit sample for his research work.  Anything I can do to advance the cure.   I'll never go into medicine at this point so giving my blood, spit and filling out surveys are the best I can do.  But, it would have been nice to have a few more tools offered to me to help treat the symptoms of the CFS.

The other cool thing that came out of our visit is that I will probably be asked to participate in the Lipkin study.  Woohoo!!  That is so neat.

We did discuss glutathione and my diet.  He was happy it was helping and we agreed that we couldn't untangle how each piece was helping me and if my improvement was due to one or the other or the combination of the two.  He took notes on my diet and didn't bat an eyelash when I mentioned raw dairy.  Curiouser and curiouser.

One last note: I was really impressed with Brigham and Women's facility but damn they need better signage.  We got seriously lost trying to get to the clinic.

Trip to the CFS Doctor

I went to see my two CFS docs on Monday.  This is partly the cause of my week long crash.  I figured if I had to make a 45 minute car trip I might as well see both of them at once.

Doc #1
This is the diet/infusion doc at the Marino Center.  He is the one that sent me to the nutritionist for the elimination diet (see Diet From Hell) that made me crash for over a month.  This was my first visit back with him since then.  First we went over some lab tests I had done months ago (I have been avoiding him since spring).  Turns out I am free from any yeast or fungal infections.  Which kind of shocked me since I've had some sort of skin rash going for over a year now.  I figured I was full of yeast or fungal overgrowth or both.  But I have neither.  Yeah!!  Small but significant victory.  I won't have to go through hell to kill off the little beasties.

Second we discussed my horrible reaction to the diet.  We decided that my body isn't getting rid of toxins very well.  He needs to get my body functioning better before we try detoxing again.  So I am now supposed to schedule three glutathione infusions.  I will get one a week for three weeks at increasing dosages each week.  We'll see how I do with these and then decide where to go from there.  If they work and I feel better, then a very gentle and controlled detox will be done.

He tweaked my supplement regimen to increase my anti-inflammatories and we ran out of time.

Doc #2
This guy is my primary CFS doc until I see Dr. Komaroff in October.  We went over the same lab tests and also the blood work my regular primary doc ran on me the week prior.  We went over supplements again with some more tweaking.  Then discussed the steroids.  He upped the dose again.  I'm now at 20mg/day but we spent a lot of time figuring out the proper dosing schedule.  He hadn't realized that I was nocturnal and I was taking the pills at the wrong time of day.  He also put me on fish oil so that I could stop taking the Fenofibrate my regular doc put me on.  The stuff gave me horrible chest pain from heartburn so I wasn't taking it daily like I was supposed to anyway.

He did the usual weight and blood pressure check on me.  We talked about my mobility.  He was glad I had a walker so that I wasn't totally restricted to the wheelchair to get around.  More exercise.  Hah, he doesn't know I don't make it past the end of my driveway with the thing.

Then he sent me off for more blood work.  He is checking my magnesium level again.  Apparently my regular doc checked serum levels (blood level) and not cellular level.  Serum level only tells you how much of it got from my stomach into the blood not how much the cells are actually using.  He also checked my B12 again and something else that I've forgotten already.  I still haven't got my test results back.  It takes longer for these guys since the tests are out of the ordinary and have to be sent half way across the country.

Anyway, the action plan is for me to do the infusions, increase my steroid dosage and carefully watch for a reaction, and alter my supplement dosing.  On wards and hopefully upwards.  And I still hate fish burbs!!

Extra! Extra!

I have had a couple of very very good weeks!  Of course you've already seen some of the good news: I was awarded my long term disability case, hubby loves his new job, and I have my old hubby back so the marriage is starting to hum along again.  Yay!!

But wait there's more!  The mailman has been good to me this week.  He has brought me my paperwork for LTD.  I just have a few forms to fill in and I get all my various insurances paid by my old job.  Also they are refunding all the money I paid for COBRA.   Seven months of $1600 payments adds up to a nice chunk of change.  Then there is eight months of back-pay and I can get my meds reimbursed as well.  I just have to find the dozen or so receipts from the last seven months.  Of course I'm socking all the money away so that I have lawyer money for when I have to do this all again in two years.  Blah.  I'm not looking forward to that.  But the next piece of news might help with that....

The mailman also brought me a letter from Dr. Anthony Komaroff.  He has accepted me as a patient!  Woohoo!!  It might be a few months before I get to see him but I am now going to be under the care of one of the leading CFS specialists in the country.  Yay!!

The mailman also brought me a letter from the MBTA (MA Bay Transit Authority).  They accepted my application for the handicapped van so I now have a cheap ride so I can get myself to the doctor after my kid leaves for college.  We are going walker shopping this weekend.  I'm getting one with a seat so I can sit down while waiting for my MBTA Ride to show up.

As for meds, more good news, the steroids seem to be kicking in.  I have way less pain and actually keep forgetting to take my Celebrex.  My sleep schedule is slowly swinging around towards normal.  I'm getting tired earlier so instead of going to bed at 4am, last night I went to bed at midnight!  That hasn't happened to me since I had that shot in my shoulder.  I'm even sleepy now and it is only 2am.  I'm also sleeping very long hours again which also happened to me right after I got my shot.  Last night was the longest, 14 hours.  It should taper off as I catch up on high quality sleep.  When the shot settled down I was sleeping 9 hours from midnight to 9am which is reasonable.  Beats 5am to 1pm which I was doing two weeks ago.  Anyway, the doc just increased the steroid dose again so things should improve a bit more.  I just have to get past this heat wave which so knocks the stuffing out of me.  I'm wondering if I am going to have tons of energy when the temps get more reasonable.  Ah finally some good stuff is happening.

Oh and I'm seeing our couple's therapist on my own instead of attempting to climb stairs to see my old shrink.  He does CBT so I'm looking forward to trying it out and seeing if it helps any.  My attitude can always be improved upon even if nothing changes physically.  It will be a positive thing in my life.

Medical Procedures

Medical procedures are a trial even when one is well. I have found it to be an absolute mine field due to my FM and CFS. Now that I know I have had FM for years it explains my adverse reactions to the various surgeries I've had over the years. I've woken up during a surgical procedure. Yuck! Then found bruises on my body afterwards where the staff apparently had to restrain me although I have no memory of that part. I take months to recover afterwards. I stay weak and fatigued for up to six months post surgery and prior to now no one has been able to explain why. I've also ended up in the ER with my throat swollen shut and unable to breath after a surgery involving intubation. They had to tank me up with prednisone to get the swelling down. Now that I know most of these reactions are due to the interaction of the meds with the illness here are some useful site for future reference:

Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery
ProHealth.com
by Dr. Charles W. Lapp, MD
January 8, 2008

Guidance for Fibromyalgia Patients who are having Elective Surgery
Fibromyalgia Information Foundation

Safer Dental for the Chemically Sensitive

Hospitalization for the Chemically Sensitive Patient

CFS and Anaesthetics

Dr. Myhill
CFS Information for Your Dentist
AMA



I have included a few site regarding dentistry and multiple chemical sensitivity since my friend has both CFS and MCS.  She will be going to a homeopathic dentist.  Yes there are such people.  I knew about them because my sister had a weird dental problem and her regular dentist kept telling her she was fine.  After visiting withe the homeopathic dentist she had surgery to remove a large cyst that had been growing on her jaw beneath her front teeth.

Since I collect links please let me know if you have any additional sites that I could add to the list. 

Excellent News

About two months ago I phoned Dr. Anthony Komaroff's office and talked with his assistant.  I was told I had lucked out and he just started accepting applications for new patients.  However, he gets so many requests I have to go through an interview type process to be considered for becoming his patient.  The first step was for my primary to write him a letter talking about my symptoms and circumstances surrounding the onset of my illness.  My doctor sent him a letter almost two months ago. 

Well today I got a letter from him.  He wants me to fill out a questionnaire and send him my medical records.  I am SO excited.  I spent all day working on the information packet to send to him. 

I didn't think I would be needing any of my records for copying so I haven't done any filing for the last few weeks and as a result things were a bit higgledy piggledy.  After I straightened up my mess and printed out the stuff I had electronically I had already put several hours into the project.  Then I decided I had to write a cover letter as if my medical records weren't extensive enough.  But there is very little information in them covering the initial onset of the illness because my doc and I though this was just some weird virus that was going to go away.  Boy were we wrong.  Anyway, I spent six hours on this and I'm not done yet.  I'm exhausted but oh so happy.

Tomorrow I have to make a trip to Staples to make copies.  Then a trip to the post office to get a flat rate mailer because the packet is so heavy and includes several CDs  (MRIs, X-rays and video of me trying to walk on a bad day).

Yay Me!!!

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!

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.

Quote of the Day

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

Bad News Today

When I got up I thought I might be in for a good day.  My migraine had passed and it was a sunny day.  I was fogged and had the usual migraine hangover (I'm never sure if this is from the headache or all the meds I take trying to ward it off) plus I am detoxing from the Cymbalta so I wasn't in peak physical/mental form.  But I did have hope. 

Then things started going wrong.  First I broke the lid to my favorite blue teapot which I've used every morning to make my tea since I bought it a year ago.  I love that thing.  Then the endo doc office called to move my appointment.  Turns out my doc's son is in the hospital and it is serious so she is going to be out of the office for at least another week if not longer.  My follow up appointment is now in mid March. 

This news resulted in a cascade of thoughts and feelings.  I'm worried about her son and concerned for her.  I'm also scared that I'm not going to get a diagnosis in time for the LTD appeal.  I think if it were just me trying to feel better I wouldn't be so upset about it but I have to win this legal case or I'm financially screwed.  I was also looking forward to working with her, getting this team of doctors together to figure this out and get all the testing done.  I would like a diagnosis for heaven's sake.  It's been ten months now since I got sick and no one is willing to say that I have CFS.  I am so frustrated.  I want this to move forward.  I don't want to wait anymore.

Last night while surfing the net I discovered that Dr. Nancy Klimas, one of the leading CFS docs, has opened a CFS clinic in Miami FL.  I want to go there.  I'm scared that traveling will make me sicker but I want to talk to a doc that knows this illness cold and isn't just guessing.  I have a friend that lives near there so  I would have lodging while going to the clinic.  I would have to pay out of pocket for the visit but right now I've got the money to do this.  I was going to wait until my follow up apt with my endo doc to make a decision regarding the clinic but that is now six weeks away.  I only have until May to get the appeal filed.  Ugh.  I just don't know what to do.

7 More Vials

Going to a new doctor is always such an adventure.  You don't know where you are going.  You don't know where to park.  You have no idea if the office staff is wonderful or a bunch of form Natzis.  Well after seeing three different specialist I think I just hit the doctor jackpot with number four.  Today I went to see an endocrinologist at Lahey Clinic North Shore.  I am in LOVE with this doctor.  The facility itself is quite nice and very clean.  The elevators are too small but hey I'll deal.  She is a petite Asian woman that is smart as a whip and loves her job.  She went through a lot of the papers I brought with me.  Listened to my history.  Quizzed me on all sorts of issues such as my own health, health of my family and generally grilled me on weird symptoms that I didn't even think to put down on paper.  She did a thorough exam and noticed all sorts of stuff my regular doc missed such as my being dizzy, weaving when my eyes are closed, slight swelling in my ankles, etc.  She even tested me for OI without my even asking her!!  Woohoo!!  She then proceeded to tell me her thoughts and her action plan.  Did I mention I love this woman?  I don't have OI but since I have all the symptoms she is thinking that my cortisol levels are totally whacked.  She thinks I've had FM for a while even prior to my getting sick.  Then, when I caught my virus back in May, my thyroid went into overdrive to the point where my immune system started attacking my thyroid (hence the elevated thyroid numbers that showed up during the ID docs blood panel).  As I was recovering from the thyroid problems (the numbers went back to normal within a month) the FM flared due to deconditioning.  She is now the third doc who suspects that some of this is neural so I now have two of them wanting a brain MRI.  So the plan is: ultrasound of the thyroid, lots of blood tests for thyroid and pituitary function, testing of cortisol levels, MRI of the brain and a neuro consult.  She is going to expedite the tests and get together a team of doctors to take care of me including her, a Lahey rheumetologist (the Tufts one said she was only consulting and didn't want to follow up unless needed), and a really really good neurologist (her words not mine).  I am SO excited!!  I mean over the moon excited!  She wants to help me!  She has a plan!  She is getting a team together! This is so awesome!

Another awesome thing that happened was a girl thing.  Since my body got really wacky in September I now cry at the drop of a hat.  Prior to that point I was a stable human being and even though I am a girl I rarely cried.  I mean only once or twice a year tops and it had to be something really horrible.  Now anything will start the tears going and it just gets worse the more tired I am.  I've now cried in my primary docs office and my councilors office.  I came damn close to crying in the lawyer's office and in the ID Doc's office.  Now guys have a universal reaction to this: I get the dumbfound look and then the inevitable "Are you depressed?" question.  Guys just do not get the hormonal thing.  When I burst into tears in her office while I was explaining how stupid and shaky I get she came over, held my hand and told me "what has happened to you is awful and life altering.  I'm going to help you feel better."  She didn't ask me if I was depressed.  She didn't think I was a freak.  I have a patient crush on her.

Oh, in case you were wondering, the blog title refers to the additional 7 vials of blood they took for testing today.  I think I am close to 50 vials now.  And, the first cortisol test requires me sucking on a sponge for two minutes so they can test my saliva.  I just did my first one.  I'm sucking another sponge tomorrow night.  It has to be done at midnight.

Curiouser and Curiouser

Had my physical today.  My B12 has gone up 100 points.  Yay!  Other than being sick and gaining weight I'm in perfect health.  Even my thyroid numbers are back down to normal.  The only abnormality that showed up was low iron.  This is a new one so we are back to a GI workup which they decided against back in October.  They took 5 more vials of blood for iron and Celiac tests.  The Celiac test is going to be useless since I haven't been eating wheat for over 5 years.  Even if I had Celiac the test would come back negative.  I'm beginning to wonder about the IQ of my doc or maybe he is at the point of stabbing at ghosts since I'm still sick and he can't find anything obviously wrong.

Heh, I decided that it would be a good thing for him to see me crashed so I did too much yesterday and again this morning.  By the time I was in his office I had the shakes, couldn't walk straight and was having trouble speaking.  When I get that bad I also cry easily so of course he was asking me complicated questions and when I tried to answer I got so pissed off at not being able to talk properly I started crying.  I was also having trouble understanding him so when he asked what was wrong he got the dumb look from me.  I couldn't figure out what he wanted to know.  Then he asked if I was depressed which I'm not just having a bit of a cry.  I've already forgotten a good deal of the meeting and I was there for two hours.  I'm still baked.  I wonder how many days it will take to recover from this?  I think it was worth him finally seeing me at a bad point instead of my usual chipper self.

Another Alternate Universe Doctor's Visit

The only explanation for this is alternate reality.  One where the use of normal logic and brain cells doesn't exist.

I went to for my annual ob/gyn exam today.  Nothing has changed: I have the same address, same insurance (but new card #), same policy, same primary care doc, same employer, same phone number, etc.  I have been seeing this doctor for almost ten years so I'm not new to the office. 

Okay, so I go up to the window to check in:
receptionist: "Do you live at ## X Street?"
Me: yes
R: Your phone number is ###-###-####?
M: yes
R: Your insurance is blah?
M: yes
R: You work at blah blah?
M: yes
R: Your work phone number is ###-###-####?
M: yes
etc
She is checking all this stuff on her computer monitor and I confirm that everything is the same.  They take my insurance card because for some reason that makes sense to corporate health care the number had to be changed on my card even though the plan hasn't changed a bit.  I guess it keeps some manager's kid employed at insurance headquarters.  The receptionist hands me a pile of forms to fill out.  Apparently they make the patients fill out the lab work forms so they don't have to do them.  However she doesn't mark which boxes I'm supposed to fill out of the thousand on the form.  I manage to pick out name, address, phone and insurance info (which I can't fill out since she has my card) out of the plethora of lines and boxes and I dutifully fill them in.  The next form is a fill-in-the-blank for their office and guess what?  It is the same 20 questions that I just answered at the window.  The same 20 answers that are in their computer system.  The same form I filled out the last time I was here a year ago with the same 20 answers.  I leave half of them blank and use as many abbreviations as possible.  This is STUPID.  It probably gets filed away and no one ever reads the thing anyway. 

She calls me up to the window because they are having trouble with my insurance card.  I don't know who did what but the 20 questions start again: "who is your primary doctor?" (uh did this change since five minutes ago?) , "who is your insurance company?" (like duh I can see my card in your hand from here!  Who do you think it is??).  "Well the computer says you have Amica." (and of course the computer is right??  right??).  "That is my auto insurance," I tell her.  (why in hell does my ob/gyn have my auto insurance in their system?) "But the computer won't let me put in your health insurance number."  (and this is my problem how??  I can't fix this for you.)  "Do you see any other doctors in blah practice?" "No just my primary," I answer.  They look utterly stumped.  I get the deer in the headlights stare from the insurance lady.  (Sorry I really can't fix this for you or even attempt to figure out what you guys did to mess up your database.  I'm smart but not that smart particularly since I am on the other side of the window and not at your work station.  If you gave me an hour I could probably hack your system and fix it for you but I don't think you'll let me do that.)  "We'll have to figure this out."  (ah yeah I'll just go over here, sit down and read my book) 

The receptionist calls me back to the window.  "You have to fill in you DOB on the labwork form and your insurance number and fill in the emergency contact information and insurance information on the office form."  (Your kidding right?  Are your fingers broken?  Does your brain not work?  Do you expect me to drop dead in your office so you will need to call my spouse?  Why am I being punished for not filling out your anal forms correctly?  All this already exists on file since I filled this form out the last ten times I've been here, it is also in your computer system and NONE OF IT HAS CHANGED!!  WTF!?!)  Can you tell I'm starting to loose my patience here?  Then the insurance lady calls from the other work station "Don't worry we figured out the problem with your insurance card!"  She was so happy.  I just mumbled "I wasn't worried."  (which I truly wasn't, after all it isn't my problem anyway so why should I worry?)  I kind of busted her bubble.  Ah my geeky introverted self bursts forth and does something socially inappropriate.  Of course a good deal of my lack of patience has to do with the sheer number of doctor appointments I've had to go to this year, the reams of paperwork I've had to fill out and the fact that the people putting the data into the computers will fight you to the death that the computer is right and the patient is wrong.

I go back to my seat after three rounds of 20 questions and two rounds of anal form filling.  Now, I am the ONLY one in the waiting area.  I've been the only one here since arriving 15 minutes ago.  The nurse comes out and asks me if my name is blah? (You have GOT to be kidding me!  I know they like double checking and such but can't you be a bit more subtle than that? ARGH!) 

The rest of the appointment slipped back into real space.  I was no longer asked what my name, phone number, insurance company etc was.  However, I was now crashing and had a headache and was worried about how in hell I was going to drive myself home as my brain fog started to ooze back in.  Sometimes I swear doctors' offices exist in an alternate reality.

Extra Extra

New serology tests are available to test for XMRV and varients.  The kit itself only costs $65 but there is no word yet about the tests costs.

http://www.fightingfatigue.org/?p=8629&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+fightingfatigue%2FuZPJ+%28Fighting+Fatigue%29

In other words I can go to my doctor and get tested for XMRV whether my insurance will pay for it or not.  Now, what to do with the information once I get the test results back is another matter all together.

What? Me Worry?

Should you worry when the nurse that is drawing your blood has something like this hanging off her id badge??  BTW, I asked her if she ever stuck needles in it and she said yes.  She also calls him a different name every day.

Image scarfed from http://www.etsy.com/listing/54501239/black-voodoo-doll-stitched-scary-face

I AM Worthy

This post is going to be a bit rambling.  I'm still pretty fried from My Big Day in Boston.  I was so nervous last night I couldn't sleep even though I was tired.  I think I got about four hours total so I was already cooked when I arrived at Tufts Medical.  I made hubby follow me around.  This is the first time ever I have needed him at a medical appointment. Usually I am very self sufficient.  Hubby came in very handy.  He read over my papers that I had to fill out.  He remembered stuff I had forgotten.  And generally kept me from having a massive crying jag in the middle of the waiting room.  I was scared they would think I was dumb.  I was scared they wouldn't take me seriously.  I was scared they would think I was lazy/faking.  And OMG I was so very very tired.  I couldn't think straight and needed help walking.

I had my initial interview with a fellow (that is someone who has done their residency and is now studying under a specialist but who isn't a full doctor yet).  After a long interview regarding my history, family history, blood tests and not so much with my current symptoms she disappeared saying she was going to discuss this with The Specialist and would be back in a minute.  I could tell she was tired herself in the normal sort of way.  I kept seeing a thought bubble over her head that said "if you think you're tired you should try being a doctor for a while...." each time she looked at me.

Apparently I was "interesting".  Not only did she show up with The Specialist but he also had another student in tow.  I was worthy of lots of attention.  I had weird symptoms that they couldn't immediately figure out.  (I had the fore thought to type up a symptom list the night before which I had given her with my packet of papers from the doctor.  This was a good thing since she did a bad job of getting a list of my current symptoms.)  I was a medical puzzle.  He went over my history again and it was cool.  He really listened to me.  Made lots of eye contact.  Asked me lots of questions.  Examined me again.  He then rattled off a long list of blood tests he wanted done based on my symptom list, the fact that I have cats and the fact that I traveled to NM the month before falling ill.  I asked him about testing for XMRV.  He smiled and immediately asked the students if they knew what that is.  He then told me not yet.  He wants to try this other stuff first and doesn't want to jump to the conclusion that I have CFS yet.  He said if we get to the point of testing for XMRV he has a colleague at Mass General that is looking for study patients.  That would be cool if I could help the docs understand this better.  I could then contribute to finding a cure.  I've been trying to keep good records of symptoms and the like.  Mostly because my memory has been so bad but it is helping document the course of the illness. 

After waiting some more the nurse came and fetched me and drew 8 vials of blood and then filled a syringe as well.  She then injected my blood into two bottles of liquid which are going to be baked for one to two days.  They then take the guck that grows in them and spread it out on a petri dish and let it grow some more.  When they look under the microscope they will be able to see what is living in my blood and if they are aerobic bugs or anaerobic bugs.  The later being the nastier of the two.

I'm excited.  I have to wait a month before I can see them again.  The docs wanted me back in two weeks but the first available appointment is a month out.  The next one is at 8:30am so I will be toasted again.  But, I'm making progress.  I'm very happy with the way things went.