One Sick Mother

(Meno)Pause for Thought

In case you haven't guessed by the title, this post talks about Women's Stuff. My male readers will be forgiven if they bail out now.  

So early last year, our family was invited to join a relative at their fancy timeshare for a week. A good friend arranged to house/pet sit and all four of us went away on our first vacation all together in some years. 

As most of my readers know, food is a big issue for me. Big meals trigger seizures and there seems to be some kind of magic combination of proteins, fat and starch that will prevent this from happening so much. Unfortunately, I can't quite figure out what that combination is.  Also, I have gained a lot of weight in the past few years, so I do try to watch what I eat. Especially carbs, which like to bypass my digestive system and apply themselves directly to my ass. 

Except for this trip. For this trip, I made a decision to let all my hanguops go and enjoy myself. If I wanted to sit by the pool all day with a cocktail in one hand and a chocolate cake in the other, I would. 

After the first day, I didn't need my cane for the whole trip. I didn't have a single seizure, either. I attributed this to lack of stress; being on holiday or whatever.  But I had a sneaking suspicion my new "eat what the fuck I want" diet was a contributing factor. So I kept it up after we got home. And felt a lot better. Fewer seizures and I rarely needed the cane.

Except right when I got home, I started to have a huge problem with hot flashes. Problems on the "I need a change of clothes" level. And the "flashes" were badly named. They weren't just a sudden blaze of heat that dissipated quickly. They hung around for thirty, forty minutes or more. I was waking several times per night. One evening, Himself found me standing in the bath fully clothed. I had chucked every ice cube in the house into the bath and was standing in the icy water, holding two handfuls of ice cubes (which I was rubbing on my head and neck)  and crying, because I still couldn't cool down.  

After that incident, which I decided was NOT normal, -even for me- I took myself to the gynecologist. Tests, tests, tests; went back for the results.

"Remind me of your symptoms, again?"  

I reminded her.

"And you are ...43?"  

"Yes"

"Hmmm. well, based on your symptoms and this bloodwork, you are definitely in menopause."

"Perimenopause?" 

"No" she said, as she indicated the results again. "Post. Post menopause  (and I think she saw my face, which must have been a picture). You are very young for this, and normally I would wait until you hadn't had a period for a year, but these numbers are VERY low and combined with your symptoms, definitely indicate post menopause"

And then we had a long talk about hormone replacement therapy, due to my young age ("I don't want you to live the next 40 years without estrogen") and the severity of my symptoms.  

We also had a discussion regarding my seizures and if she thought they might be related to hormonal shifts. The timing fits right in there. She didn't know, but recommended a particular neurologist.

So that was a bit of a shock, let me tell you.  My perception of a post-menopausal irishwoman is a slightly less extreme version of this.

...definitely not me.

And while I had no intention of ever having more children, it was still a bit of a shock to know that the option had been removed without my prior knowledge or consent. More of a shock in my case than some: My sister, who is just a few years younger than me, had just had a baby.

It took awhile to get the HRT all sorted out. The doc needed more tests and a letter from my neurologist (#25)  saying he was OK with me taking hormones and I wouldn't die. 

In the meantime, I saw my rheumatologist, told her all this and she was all "you know, I thought it might have been a hormone thing..."  (funny how you always remember right at the end, Toby).

So I have been replacing hormones for a few months now. Most (not all) of the horrible hot flashes are gone and I am sleeping a lot better at night. I have NOT been seizure free, more's the pity (see the bread post) but the seizure frequency didn't seem to change when I started treatment. I have stuck to my "eat when I feel like it" plan, which has done nothing at all positive for my ass, but has definitely been rendering me more functional on a daily basis. 

Is my early and uninvited menopause related to my sudden onset of  atypical seizures (also uninvited) at the age of 39?

I don't know.  I can't think it's unrelated, but my gut tells me if there is a hormonal link, it is related to how hormones effect some underlying condition, and not a direct 'cause and effect' thing.

Whatever it is, it's not normal. That much I do know. Story of my life, lately.

Brown Bread Adventures

Recently, I have been craving brown soda bread, like we used to get at home in Ireland when I was growing up. Not a bad thing to crave; soda bread is very healthy; whole grain, low fat, delicious.

This craving started with a combination of a few things. After the Stove Woes of Thanksgiving (a story for another day) I finally -after 12 years in this house- have an oven in which I am willing to bake something a bit more involved than packaged brownies. And I found out that a beloved aunt had died back in Ireland, which made me sad, nostalgic and craving comfort food.

So I determined to bake myself some soda bread.  I have great memories of Mother Francis in the convent orphanage mixing up large industrial batches of brown bread by hand; apparently weighing and measuring nothing, but the bread came out perfect each time.  Those afternoons in the big convent kitchen where she baked, a few of us kids keeping her company and helping in small ways, are some of the warmest memories of my childhood.  

And I have a great book 

Which I got on sale when Borders was closing. I highly recommend it, BTW.  The French Onion Soup is to die for. There are a few recipes therein for brown soda bread (and yeast bread, homemade butter and .....loads of interesting stuff). Darina Allen advocates using sour milk in brown bread. Not milk that has lemon juice added, but spoiled milk. She says it is the old-fashioned way and that it gives a better flavour than buttermilk (which is the common substitution). I remember this clearly. I remember Mother Francis reserving the "gone off" milk for use in the soda bread ("Waste not, want not. There are starving children in Biafra"). OK fine.  Spoiled milk it is.

I found some half&half that had been bought for Thanksgiving and only half-used lurking in the back of the fridge. The expiry date was  December 16th. I found it on December 27th. Great! I took a whiff. It smelled perfectly fine; fresh, creamy delicious. Not a whiff of sourness. I left it out overnight. The next day it STILL smelled great. And the day after. At that point I posted a rant on Facebook, and several of my friends left comments to the tune of "Are you out of your mind? You'll poison yourself!". But of course, I knew better. I had eaten bread made with spoiled milk in Ireland in the 70s and I was FINE (mind you, that milk only took a day or two to spoil). The bread would be baked in a (working!) 400 degree oven, which would kill any unpleasantness, anyway. Right?  

What could go wrong?

On the third day out in the warm kitchen, kept  close to the radiator, the half&half was finally starting to whiff and separate. So I made me bread. It rose beautifully, smelled gorgeous, was a bit crumbly from the extra fat in the half&half, but tasted delicious! I was so proud of myself! I had gotten up early to jab the cat, and had stayed up to bake bread. It was 9:30am, I had fresh bread from the oven for breakfast and the whole day ahead of me.  

And then I had the biggest  seizure I have had in a long time. Five hours blown. And when I came back, I felt horrible; weak, tired, shaky and running a fever of 101.5. 

"BUT IT WASN"T THE BREAD!" I insisted, while banning the other family members from trying it. "Mind you, I'm afraid to have more, in case I seze again" I admitted to Himself. "Have some more at bedtime", was his unhelpful reply, which to my addled brain made perfect sense. That way, if it did make me seize again, it was while the Monsters were sleeping, and I would lose no more of the day. He caught me eating it at bedtime and was all "WTF? I was JOKING!", but by then most of the slice was down me gullet, anyway.

It did make me seize again. Not fun. The next morning, I threw that bread out. 

And I thought about what I learned from this:

I learned that American commercially-produced milk of today, is a lot different than Irish commercially- produced milk of the 1970s, and indeed, different to Darina Allen's Irish organic-farm-produced milk of today. Which makse sense if you think about it (as I did after the fact); these days, cows are given a horrifying amount of antibiotics, so there is no bacteria in the milk to spoil it quickly. Therefore, the stuff that is going to hang around and eventually spoil it for you, is probably the really, REALLY nasty shit -that is probably antiobiotic resistant. 

I'm lucky I only seized.

The other thing I learned; -and I don't know how useful this wil be- is that I have actually found a single food that will produce a seizure. One of the most frustrating things about this journey has been the inconsistencies. Food makes me seize, yes. But I have never been able to identify any particular food that would do it (except a large dose of sugar after a fast, as in a Gloucose Tolerance Test). A meal I could eat with no consequences one day, would make me seize violently on another. This makes it very difficult to control my seizures via diet. 

And I learned that if intelligent people you respect tell you a plan is stupid, it probably is. OK I knew that already, but apparently I forgot it in my obsessive nostalgia.

There is a happy ending: 

I baked this non-toxic speciman yesterday.  It didn't rise quite so beautifully, but it didn't make me sick, either.

Buttermilk, baby.

 

Slow Progress, Some Good News

Some people have been calling/emailing me about my health, so I guess I owe some updates on that front.

So #30 (who specializes in ..um  ...I forget the name but it has to do with metabolic processes) and I have been speaking for a few weeks. It turns out that he didn't BELIEVE me when I said that my seizures happened when my blood sugar is "high" (for me that means like 104 =bang slap happy normal for most people), and when my sugar is low (mid-40s to 70s) I feel a lot better. I guess repetition worked because he finally started to think about what processes in the brain might be causing this reaction in me. He said that the problem will be testing for these theories, and pointed out that whatever it is, it is likely very rare. I pointed out that if whatever-it-is ISN'T rare, then one of the 29 other doctors -none of which  are stupid, would have figured it out already.  I have wanted to document and chart this blood sugar thing a little better, but I can't find my feckin glaucometer anywhere. I think I put it in a 'safe place', which means my heirs will probably find it after I'm gone and they are cleaning out me house. Or it will immediately show up right after I buy a new one.

So #30  talked to a few colleagues (bless him)  and he wants to do an MRI specstroscopy of me brain. Fine.  I call the MRI peeps. I need pre-approval. OK. I call the insurance peeps. They need to get the request from the doctor, not me or the MRI people. OK I call #30's office and ask about it.

....and hear crickets.

I call back the next week. More crickets (and it's only May!).

Eventually, I call and manage to get the doctor himself. THEN shit starts to happen.  I don't understand why in a top hospital in NYC, a highly respected and highly sought specialist has to do his own administration. Talk about a waste of resources!

So after at least two weeks, we are now close to getting the pre-approval for the MRI. Then I will have to schedule it and actually go have it done. School is out in a few weeks so this is cutting it fine. I asked #30 if I should be in a seizurey state for the test. And he said something like "I didnt' know you had such control over it. Well, yes. I can get them to start no problem. I usually just have to eat a large meal or in take a big chunk of sugar, fast. It's getting them to stop or -better yet-  not occur that's the trick.

I am curious to see what shakes out of this test, if we can ever make it happen.

Good News

I saw Matinee Idol Doctor the other week to check on the early Glaucoma he had said was there back in 2006. I am supposed to go back every six months and it had been over two years. I got my wrist slapped for that. However, the good news is that my eyes have not changed at all since then and I can go to yearly visits. Hurray.

It was funny, because this guy seems to have a rather spoiled clientele and he seemed to think I would be put-out leaving empty-handed; no prescription, no Dire Warnings (he likes his Dire Warnings, that guy), no additional tests. In contrast, I  was delighted!  I fairly bounced out of there, unencumbered by prescriptions, Dire Warnings or additional tests. It is a rare doctor's appointment where I leave without at least ONE of those, or else a shrug and an "I-don't know-why-don't-you-contact-X-obscure-specialist?".

So yeah. good news.

...and then George, my favorite cat got sick...

More about that next time.

Doctortutes Part II

I got a lot of feedback on the last piece I wrote on this subject  before; -not here on the blog, but through Facebook and e-mail. A lot of my sick friends were intrigued and thinking about giving it a try.

That had not been my intention.

I had planned to slam the whole practice. However, as my one experience with it had been mostly positive, I couldn't.  I can't report dishonestly and slam something that kind-of worked for me.

But this is the conversation I have been having with my friends:  Say you do ask a question of a doctortute over the internet and you get some suggestions/ ideas:  What are the next steps?  I remember after #29 contacted me through this blog with a suggestion that I be tested for dysautonomia, #25 was VERY suspicious when I  told the story to him and raised (again) the dysautonomia question. "Where did this come from" he asked.

"From you. Remember very first time you saw a (small) seizure, you said that looks like some kind of autonomic dysfunction. Don't you remember?" (and it was exactly what he said).  Isn't dysautonomia the same thing?  He reluctantly  agreed.

And said he would write the referral to the dysautonmia research lab here in town.

And didn't

So although 29 was not a doctortute, the end result would probably be much the same if she had been: 

Nothing happened.

You see, most doctors have largish egos. And if you go to your doctor and say "this random MD on the Internet who didn't examine me suggested I might have X " (which you didn't think of), most doctors will be (in turn):

a. Insulted

b. Skeptical

c. Defensive

d. Stubborn

 

...and will probably refuse to follow the doctortute's advice -no matter how sound-  for one or more of the above reasons.

So really, doctortutes may ultimately add to the confusion and frustration many of us experience in trying to find a correct diagnosis, instead of helping it.

 

Something I forgot to mention in my initial post on doctortutes is the high-class version of the profession. Now obviously, these aren't known as "doctortutes" either (although maybe they should be). They prefer to call themselves "concierge doctors" or  "boutique doctors". They charge an annual retainer plus their time  and deliver sterling and individualized service for those who can afford the thousands of dollars a year they cost.  Reading the articles on these types of practices, see a NYTimes piece here  and another interesting article here, the winning formula seems to be a direct money connection between  the doctor and patient (client?  ...john?).  No insurance. No Medicaid. No medicare. This had many advantages for the doctor:  They can cut down on administration staff for starters.  Also, because they are getting a much higher return per patient, they need much fewer patients to break even. This in turn means even less overhead costs: fewer nursing staff and smaller office space.

Win for the doctor.

 

The patients seem to get what they pay for: No waiting! Fast, individualized service, doctor management of outside players, such as test facilities, specialists and  hospitals. And house calls!

I also suspect if a paying-through-the-nose patient presents with an unusual or difficult to diagnose condition, the doctortute won't say "I can't help" or "see a shrink".  Presumably the doctortute, aware of how his bread is buttered, will actually advocate for the patient with specialists and dig until he gets to the bottom of the problem. This may cost the client big bucks, but I'm guessing most have it to spend.

Win for the patient.

(and so further increases the divide between the "Haves" and the "Haves-nots")

 

Of course one cannot write an article on doctortutes without mentioning the ultimate doctortute of our time: Dr. Conrad Murray.  As everyone in the universe, and probably a few without knows:  Dr Murray was Michael Jackson's personal physician and was being paid 1.8 million per year by the entertainment company AEG Live to take care of their investment: i.e. Michael Jackson.

I was thinking about this today in the shower (I get all my best thinking done in there) and it struck me that the pressure on Dr Murray must have been staggering;  -although it was considerably less than the pressure on Mr. Jackson.  Let's think about the some of the numbers:  50 concerts, 750,000 tickets sold for a (guesstimated) £56 billion, and then all the sales from the inevitable post-concert CDs and DVDs. Huge amounts of money  and livelihoods centered around the ability of a single person to get up there and perform his heart out again and again and again. For fifty concerts. Not to mention the planning, rehearsals,  travel and promotion time.

And it was Dr Murray's job to ensure MJ could do it.  AEG Live, the doctor's employer, paid him well: 150,000 per month plus expenses to keep MJ performing.  I can only imagine they had  him under a fair amount of pressure to perform this mission to their standards.  And they aren't medically trained.

Then, as we all know,  Michael Jackson died. Suddenly a lot of people were out of work or were out huge sums of money. Dr Conrad, for his part,  was immediately under a ginormous cloud of suspicion, which has never lifted and has had his name dragged through the mud in the media.

Over the next few months, AEG Live went into overdrive: They produced the memorial service. They announced the rehearsal concert footage and sold the movie rights for a large sum. They announced refunds for the tickets sold, but also said that fans could choose NOT to request a refund, but instead to request the original ticket sent to them. For the full price.

Genius.  Sell the tickets for full price without putting on a show.  Cash in on fan zeal and grief for the price of a piece of paper (plus P&P).  And NOBODY seems to have questioned or criticized this. There is no released data that I could find on how many fans took the refund and how many chose the world's most overpriced memento.  I would really love to know. Mind you, if only 10% of them chose to receive the tickets, that would have put AEG Live well into the black for their initial investment in MJ (estimated to be about $25 million US dollars -note most  other figures are in Sterling). Add in the insurance (£17 million), the  movie deal (£35 million) and the MJ exhibit at the O2 Area in London (£17.50 sterling for a standard adult ticket, £56.50 for the "VIP package"), and  they are turning quite a nice profit on the whole sorry business, with very little further outlay.

While in the meantime,  Dr Murray has lost his shirt, is unemployable, universally hated and facing criminal charges.  Hmmm.  In retrospect, maybe Dr Murray should have charged more for his services.  Because although he clearly wasn't calling the shots, he was the one left holding the (doctor's) bag.

Let his story serve as a warning to all budding doctortutes out there.

Doctortutes

Doctortutes. I made that word up, in case  you haven't guessed. It is not an amalgamation of  the words "doctor" and  "substitutes".  It is a combination of "Doctor" and  "prostitutes".  Doctortutes:   Doctors who pimp themselves out for money. 

Now it may be argued that pretty much all doctors; -except maybe the ones without borders, charge money for their services, so therefore all doctors could be termed doctortutes. Not so. Charging a fair or market price for a recognized service, and operating out of a regulated environmentt, such as a hospital or private practice,  as most doctors do, is accepted, legitimate business practice, not doctortution. But trawling the streets, classifieds or the Internet soliciting clients IS Doctortution, in my opinion.   And quite a few doctors are engaging in the practice (pun intended):  Some are lone operators with flash, smooth-talking  websites; -the Internet equivalent of acrylic platforms.

But most don't bother with these costly "cheap" tactics.  Most use pimps.

Yes. I said it: Internet doctor pimps.  Who needs science fiction when the real world is right here? 

Here is the story:

Just the other day, I was noodling around the Internet, researching something (probably a scam), minding my own business (sorta), when a pop-up window appeared on my screen (note to self: upgrade pop-up blocker).  The window advised me that there were twenty doctors standing by waiting to answer my medical question, and invited me to type it into the box.  So for laughs, thinking this will stump all 20 of them I typed in  "why do I have a seizure after I eat a meal?"

And then another box popped up, asking me how much I was willing to pay for this answer?  And the term "doctortute" hit me. I started to save screen shots and write this piece...

..and then my feckin computer crashed!  I lost all the screenshots and everything else.  Bummer.

My computer mysteriously came back from the dead a day and a half later after I decided not to finish my cliffhanger story about the beginning of 2010. Apologies to my regular readers, but I took that crash as a sign, even though I know some people may suggest that maybe it was the internet doctor pimps and the doctortutes who might have actually have been sending the "sign", as that is what I was working on at the time of the crash. I don't believe it.  Conspiracy theories  don't impress me any. (while superstition apparently does...  I'm Irish. What can I say?)

So last night I went back on the hunt for the doctortutes. I found some at justanswer.com, which seems to be one of the biggest pimp sites; supporting not only doctortutes, but also plumbertutes, mechanictutes, lawyertutes (OK that's nothing new) and various other "tutes" who will answer questions in exchange for your cold, hard credit card number. 

 
It's actually not a bad gig for a "tute", who I imagine is playing Solitaire or Farm Town in-between answering questions.

I didn't manage to find the popup that had found me the last time (I have no idea what I had been doing to deserve that!),  but on the main site there was a space to input my question, with 24 doctors online, apparently waiting eagerly to answer it. 

 

I couldn't resist. I knew it meant committing funds that I don't have (can you claim blogging expenses on your tax returns? Honestly, legitimate journalists have it so much easier than Sick Mothers), but I really had to see where this would lead. I figured that even if I didn't get a viable medical  answer  out of this (and I didn't expect one), I might at least get a good story for this blog, albeit at rather a high price. And I kind of liked the idea of exploiting a dotortute in order to write about him here -which is probably something I should address in therapy (I'll put it on the list).

 

So I went for it.

I typed in my question:  "Why do I have a seizure after I eat a meal?"  There was a followup question of what I had done about it, and I wrote "tried multiple AEDs, most of which made the problem worse".  And I hit "Enter"

Then we get to the nitty gritty: 

 

I was told "Dr. P "wants to answer my question" and I was asked how much I wanted to pay for this answer? I was given a few price options and  prompted to the middle one, which is  $38.  Would I pay $40 to have that question answered? Hell yes! I would pay a lot more than that.  Of course, I figured their definition of a satisfactory answer might differ from mine. However, the curiousity was killing me, so I continued on.

The site had said that I wasn't going to pay unless I was satisfied with the answer.  It then  advised me that it was going to take a "deposit"  against this answer. OK fair enough. Except the 'deposit' was the entire amount, placed into "my account"  Hmmm.... 

 

Well; in for a penny, in for 38 dollars: I continued on.  I had been  promised that someone called "Dr P" had been standing by to answer my question. Then Dr P was suddenly  gone..

 

...and  Doctor Ozz was looking at it.  I guess he passed it up too. Finally someone called "Mysticdoc" decided to take my question. That was worrying.  I wanted a real doctor, not a mystic!  Then I looked at his profile, and realized that "Mystic" was probably meant in terms of Mystic, Connecticut, as opposed to "Mystic Meg"

 

Thank Christ for that! Because if it was anyone connected to her, that would be downright scary...

 

Mysticdoc actually came back with some intelligent questions.

 

 Do you have any other medical condition?

What medication you are taking currently?

How do you know these are seizures?

Association with any particular food?

Any family history of seizures?

What tests have been done so far?

 

These questions I answered equally intelligently, with the honest facts as best I could remember and summarize  them (what tests have been done? OMG  that's a tall order to remember on the fly!)

There was some back-and-forth. The way the system works is this: the "tute"  doesn't get paid until the client accepts the answer and the client can ask follow-up questions related to the answer (but any questions on a "new" matter would be another chunk of change) . Therefore, the doctortute is incented to give a satisfactory answer. It would be highly unlikely that I would receive the two most popular answers I get from regular doctors, which are

a. "I can't help you"

b. "have you seen a psychiatrist?" (ie. it's all on your head)

Now, although I have argued against this in the past (here and here if you are curious),  these are both considered perfectly legitimate responses in traditional medical practice, where doctors are not actually required to help you and they still get paid for the visit and their time. However in doctortution, the compensation is directly tied to a satisfactory answer. The  "patient" (I have to use this term loosely here. Hey, Let's keep in theme and use the term "john" ) can  refuse to pay if an unsatisfactory answer is given.  Yes, the pimp still has your money, but the john can either go to another doctortute, or can start the process to have the money returned (and I am not sure how easy this process is, but it is there).  It is an interesting change to the dynamic, don't you think?  Much more customer oriented.

"Mysticdoc" gave me two good pieces of information I think I can use:

1. Sodium and calcium (both minerals with which I have had issues  in the past) play a huge role in seizure pathogenesis.

2. A  functional MRI (fMRI) would probably be a good test for me to see what is going on in my brain. I asked him if the MRSpect, the scan that #30 is planning to do as part of his study is the same thing, and he said no. The fMRI would be better. Hmmmm. 

Funny thing is this: #25 had mentioned performing a fMRI a few years ago, them he changed his mind because "nobody would read the paper". Fuck papers! This is about getting my life back, not about papers.

So I figured Mysticdoc had earned his $40 and I paid him (love that they leave space for a tip!) and allowed him to move on.  I declined to leave a deposit against any future questions I might want answered. No free money from me!

 

Then I thought some more: You know,  with the discounts many HMOs and other insurance companies negotiate, a regular visit doctor visit probably pays about the same as one of these internet consultations, but with much higher overhead (offices, staff, insurance). So for the doctors, doctortution is quite a good gig. They can hang out at home in their jammies, with one eye on the telly, picking and choosing which questions to take, getting paid directly for their time.  It's not a bad deal for them. And it answered the question I had when I first saw the site: Expecting people fresh out of med school, I had been surprised to see some of the doctors lurking sported lots of qualifications and years of experience.  I guess if you are a doctor, this  is a handy way to use your qualifications part-time to top up the old income: You know, pay the country club fees, alimony  and your daughter's speeding tickets.

Is doctortution a good thing?

I don't know. I think it is an interesting development in the healthcare system, and it satisfies our need for instant gratification. Of course, an Internet doctortute is no substitute for an actual physical examination or for someone's regular doctor and -needless to say- doctortutes can only advise, not diagnose or prescribe. But I think, as a fresh and unbiased set of eyes  on a case, doctortutes might have their (limited) use. I know my experience has spurred me to go find a new neurologist, a seizure expert this time.

I'm losing count, but I think this will be #31. Maybe that will be the charm?

And Waiting...

Remember that old Diana Ross song, "I'm still waiting"?  Well, that has been going through my head recently, despite the fact that I hate it.  Now don't get me wrong, it is a lovely song and all. You know the story, right?  A little girl has a crush on an older neighborhood kid and he tells her not to bother. And then he moves away and tells her

"Little girl
Please don't wait for me
Wait patiently for love.
Someday will surely come.."

And of course she doesn't listen.  She waits for him. And as far as I know, she is waiting still.

Because - and I realized this years later, -after I grew a clue. He's GAY!  She can wait until Hell freezes over, gets hot again and then freezes AGAIN, and he's STILL not going to be interested.

...and that's why I hate that song. 

So I heard back from #30 about the whole brain scan thingy. It is a study, won't cost me a bean for the scans (which is good because Insurance won't cover), and maybe some of the other stuff is covered (even better).  However, they are waiting for Board approval or somesuch red tape so I need to hang out some more until that comes through. #30 was very apologetic about the waiting, which was nice of him. However, I don't like hanging around when I could be getting answers.  So we had a conversation which went something like this:

Me: "You know, I'm still confused as to why -if this is CFS- do I feel so much better when I eat hardly anything at all? Yesterday I only ate a few crackers every few hours and I felt great. No episodes at all.  Is that normal for CFS? (subtext: unless you rule everything else out, I won't fit the criteria for your study).

#30:  "That's Interesting. I'll tell you what: While we are waiting for the approval to come through, why dont' we go ahead and schedule a Glucose Tolerance Test to get your glucose and Insulin levels.  Because you know; -just recently I had a woman with that very thing..." (Subtext: Good point. I don't want you buggering up my CFS study if you have a metabolic problem.  Let's rule that out before we get started...)

Ahhhh. The old give-and-take of the negotiating table. How I missed it! 

My GTT is scheduled for tomorrow.

I'm Still Waiting

I went to see doctor #30 in September and I didn't hear back in over a month. I was seriously starting to wonder what was going on with this guy. It turns out the doctor got sick, needed surgery and was out for a few weeks. He assured me he is All Better Now.  I'm happy for him. However in the meantime, I am nowhere near better and thoroughly sick of feeling horrible all the time.  I suppose there isn't much you can do if your very highly specialized doctor is sick, except wait until he is better and hope he doesn't die.

So in case you haven't guessed, we finally spoke last week. None of my labs were surprising, according to #30. My Epstein Barr titers are still very high, as are markers for Parvovirus.  He didn't test me for the new CFS virus that everyone has been talking about recently. Nor did he test me for porphyria, which he had specifically said he would do.  I had that abnormal result months ago and no-one is willing to follow up on it.

*sigh*

So #30 seems convinced I have CFS. He said he is getting together with a expert on MR Spectroscopy  on Monday -today actually, to talk about new imaging techniques for the brains of people like me.  I am to call him tomorrow and talk about ...something.  I'm not sure what. I go the impression that they were thinking of putting together a study, but I'm not sure. I'm in two minds about a study.  The last one in which I participated ended up with me getting unnecessary and experimental surgery and being charged for it.

But it also looks like this imaging; -although definitely interesting-  is considered experimental (but non-invasive) and therefore not covered by insurance.

And I'm poor.

AND there is still the whole having-to-trek-into-the-city-three-times-per-week thing which has not been resolved.

Maybe we'll get it all sorted out tomorrow. 

But I'm not holding my breath.

Stay tuned.

Gardasil, The First Frankenvaccine

A friend, a young lady of college age,  recently posted a link to this video on her Facebook page.  It is the story of Gabrielle Swank, who has become very ill after receiving her third Gardasil vaccination.  Aside from the obvious impact such a story would have on anyone; two particular aspects of it struck me very hard:

1. Many Of Gabrielle's symptoms are very similar to mine; although hers are  more severe and sudden in onset.  I checked out some other stories and a similar list of symptoms emerges.  Hmmmm.
2. My daughter, Grace is nine years old. Very soon, I will face the Gardasil decision on her behalf. (Ugh)

 

So I decided to investigate Gardasil. Like you do. And to share my findings with you.  Because there is a lot here and it is interesting, while at the same time; kind of scary:

The first thing I found out is this: Gardasil is the very first of a new breed of vaccine, which is manufactured by a completely different process than traditional vaccines have been.  There are two new vaccines in a similar vein racing through the FDA as we speak: Cervarix, by GSK, another HPV vaccine and a direct competitor of Gardasil, and a new H1N1 "swine flu" vaccine by Novavax.

Hello, Big Red flag!

Traditional vaccines are made using a live virus, which you then put into the embryo of a developing hen's egg. You leave it for three days for the embryo to develop  some more, replicating furiously and making new virus as it goes. Then you crack the egg,  extract the virus, kill or disable it so it won't cause the actual disease, clean off the bits of dead chick, and voila!  One single vaccine dose!  So you can't make a vaccine without breaking some eggs. (idle thought: Do vegans get vaccinated?  Hmmmm.)

Here is a video explaining the process.

There are several problems with this method: It is slow, labor intensive, expensive and is very dependent on the supply of chickens/eggs.  Apparently they prefer to use young hens in their first laying season, then they "sacrifice" them before the next virus season, presumably rearing a batch of their offspring as a replacement. ('nother idle thought: You know, reading all this, I wondered how they would make an avian flu vaccine? What if the flock got infected with the bird flu virus? ...Or would that be a good thing, and save the trouble of introducing the virus to the eggs artificially?).

The Gardisil vaccine is made using a brand new process -long overdue-  using something called VLPs, which stands for virus-like particles.   I know, right:   WTF is a virus-like particle?  Well it is a fancy,  state-of-the art piece of genetic engineering.

Best as I can understand; it works like this (this is my over-simplified and somewhat over-dramatized version, but it is not entirely inaccurate):

You take a virus, remove it's brains, and then put it in a little bath of yeast and nutrients. The virus will reconstitute itself into something mute that looks and walks and like a virus, but isn't technically a virus anymore. Therefore the name "Virus-Like particle".  

 

I prefer to think of it as a Frankenvirus.  

 

With the brains removed, the Frankenvirus  cannot cause that specific illness,
but it can still reproduce  (similar to  many man I know, no brains, but ready to reproduce with anybody not fast enough to get away)!  And so it does just that, merrily making more Frankenviruses without the lab needing to use any hen's eggs at all (and I bet all the vegans reading this are heaving a HUGE sigh of relief and queuing up to get Fraknenvirus injections...).

Because VLPs -or Frankenviruses as I now prefer to call them (it is less cold) LOOK very similar on the outside, the human body reacts to them as it would to a regular virus, generating antibodies and therefore immunity to the original virus. Apparently the process can be further tweaked, adding bells and whistles in the form of protein coatings that may trigger different immune responses in the "host" -which is the drug company's preferred term for "person" in this scenario (it is more cold).

Frankenvaccines are believed to be safer than traditional live or killed vaccines because there is no way they can inadvertently cause the illness for which they were designed. This all sounds very well and good.

But what about causing NEW illnesses?  Did anyone think to check that one out?  -Before Gardasil went into mass production on our next generation of mothers, I mean?

Yes, there were clinical trials, but this is brand new technology. There have been NO long-term trials -intended to be run "post-marketing" (i.e. we'll inject it into all of your little girls and let's see what happens!).  I wonder how many parents were informed that the Gardisil vaccine that was being injected into their daughters was the very first product in a brand new generation of vaccine technology? Because that is information I would want to know, and I think I have a right to know it before I am guilted into making a snap decision in the pediatrician's office

 As a former software person, I know that  "version 1" of any product is usually loaded with bugs (pun intended). Every person in my business knows that you have to get to at least version 3 before they get most of the glitches out of the software. So generally, we install our new code on our colleague's computers befire our own (Really. it's mean, but we make an excuse and we do it).

The big th 
ing about new software code (and presumably new vaccines and Frankenviruses), is that they may work just fine in the lab, but you never know what kind of conditions they may encounter out in the real world. W hen you release them into the world, there can be all sorts of actions, reactions and interactions with other entities and other ...stuff that you could not possibly have predicted under lab conditions.

...not to mention the long-term effects, which have not been studied at all.  

 

 

 

Eventually, we iron out all the little glitches and we release a cleaned-up and safe product in version two or three.

 

 

 

 

Did the FDA, the doctors or ANYONE warn patients or parents that Gardasil is a 'version 1.0' -not just of a vaccine, but of a whole new technology and  processing methodology?  If anyone has been offered this vaccine, I would appreciate them letting me know if they were told this (thanks).

 

OK now to completely change the subject back to me for just a second.

I have been told I might have Chronic Fatigue Syndrome (CFS).  This was based on the fact that my system contains an abnormal number of antibodies against a virus. In my case, it is Epstein-Barr, but other cases of CFS have been linked to the HPV viruses.  I was very struck by the fact -as I mentioned earlier, that many of the people who got sick after the Gardasil shot had very similar symptoms to mine. Scarily similar.

And this got me thinking -funnily enough (in light of earlier descriptions)- of chickens and eggs:  Namely can CFS or a similar illness be caused by an immune response, rather than a viral infection?  In other words, could a Frankenvirus, which cannot cause illness in itself, cause a different kind of illness by triggering an unexpected immune response in some individuals?

Good question, no?  I wonder if anyone with any actual say in these matters has asked it?

..and I also wonder if IVIG or similar might help some of those girls and women who have had their lives destroyed by Gardasil?

Another big question surrounding Gardasil and other FrankenVaccines, -quite apart from the Frankenviruses therein, are the other additives, called  adjuvants, which are  chemicals added to the vaccine, supposedly to make the virus more effective.  The main one used in Gardasil is approximately 225 mcg of aluminum (as Amorphous Aluminum Hydroxyphosphate Sulfate adjuvant).  There have been many questions raised in the medical community, asking if this additive is really necessary?  The Frankenvirus has been shown to work perfectly fine without it.

Gardasil is not the only HPV Frankenvaccine out there. Cervarix, which is GlaxoSmithKline's (GSK) version, has been approved for use in the UK and parts of Europe. Cervarix only contains two Frankenviruses, (as opposed to Gardasil's four) but  GSK have been bragging hugely about their adjuvant,  known as AS04, saying it provoked an even better (i.e. stronger) immune response than Merck's boring old aluminum salt.

'scuse me, but is that a good thing?  Just how much immune response can a body take before it goes into overdrive or starts to shut down?

The one death which had  initially  been linked to  Cevarix, now turns out not to have been linked at all. The 14yo English girl who died had undiagnosed cancer, which had become quite widespread. OK fair enough, but I still think the shot thing was probably a bit more than a coincidence. What else had changed with her?

I don't want to create mass panic here.  I know millions of girls and women have received the Gardasil shot and been fine.

So far. 

But is their long-term health being monitored?  How many have gone on to have babies?  How ha  v  e those babies been?  Really. Enquiring minds want to know: 

What are the long-term effects of Frankenvaccines?

There have been thousands of serious adverse events reported and several deaths have been attrib  uted to Gardasil. I don't think the FDA is looking at this as anything more than just another vaccine. I don't think the FDA has said to itself (as I would if I were in charge) "This is the very first in a brand new generation of vaccine technology and processes. We think we'll follow it up more closely than if it were a traditional vaccine".  No.  The FDA, the CDC, the AMA and everyone looking at the cost of cervical cancer treatment and are pushing hard for us to have our little girls injected with this stuff -which -let's face it- is to prevent against a sexually transmitted disease (it is NOT a cervical cancer vaccine. It is a HPV vaccine. Yes, HPV can and does cause cervical cancers, but HPV is transmitted sexually. How many NINE YEAR OLD GIRLS -other than the abused- are sexually active?).

Several things need to change : The FDA needs to instigate some kind of process to more actively monitor and follow up on brand new technology such as genetically engineered viruses and proprietary adjuvants. Currently, they only audit every two years. I would be more comfortable with every six months in cases like these.   Sorry if that's a lot of extra work on an already-stretched agency, but the public needs to be protected.

But instead, the FDA is pushing through more and more Frankenvaccines. Cevarix is set to be approved any day now and a new H1N1 Frankenvaccine, developed by Novavax in Maryland, is being watched with interest. They were the first to put a swine flu Frankenvirus together after the CDC released the sequence, taking less than a month to do it. This is impressive and could change the whole face of the industry.

But at what potential human cost?

Frankenvaccines  have only been in production for three years. They have NOT BEEN FULLY TESTED. The pharmacutical industry is forging ahead nonetheless. I did a little search on VLP patents which are in development or approved:

Over 3,800 of them, including at least one for HIV.

None of this is bad in itself. it would be great to have a safe and effective vaccine against HIV.   However,  I am reminded of the whole Thimerosal thing in the 90s, where vaccines were tested and approved individually, with no thought given to the overall load of virus and chemicals injected into tiny babies. This meant that many babies were injected with mercury at many times the adult recommended levels, because most of the vaccines contained it and no-one had done the math on the cumulative levels (It sounds unbelievable, but it is true. This is the kind of shit the FDA routinely overlooks).

Who is studying potential Frankenvaccine cumulative load and interactions with other Frankenvaccines, I wonder...?

I remember the 90s and it seems to me the whole Frankenvaccine issue - as it is currently playing out, has a much greater potential for interactions and adverse long-term effects than anyone in the pharmaceutical companies or the agencies that are supposed to regulate them are letting on.

So I won't be giving my kids a Frankenvaccine anytime soon.  -especially in light of my own health problems. I already have some of the reported side-effects of Gardasil already, possibly due to my immune response to a different (non franken-) virus. 

What if whatever I have is genetic?

Therefore, Grace will be "one less" person getting Gardasil.

 

Where Was I? ...Oh Yes: #30

So, in my unrelenting quest to find a diagnosis and treatment for my disabling medical condition, I took myself off to see doctor #30 last Wednesday.  This guy is a metabolic endocrinologist and works mainly in pediatrics. I found him through a buddy of Joe's, interestingly enough (long story). I had called  #30's office, hoping to see him, or at least to get a recommendation for an adult version of him -if you know what I mean (because he is an adult, obviously).  I mentioned before that he had called and after a long conversation, agreed to take my case.  Hurray!  Most doctors who see me coming start crying for their Mommy.

So I packed the kids off to school and undertook the 2 hour walking-and-public-transport commute to the hospital where #30 practices, which is big and internationally recognized. And far away.

What with public transport, hospital red tape and my appalling sense of direction, I was an hour late. #30 is a very kindly mature gentleman and he agreed to see me anyway. He spent a lot of time with me. He had copies of all the stuff I had faxed to him, but no printouts of the documents I had e-mailed. Now, I usually bring copies of all correspondence, but my printer had chosen that morning to run out of ink, and had crapped out right before the most important document: the one depicting the timeline and sequence of events leading up to my first fit (ugh).

Nonetheless, #30 took a detailed history, although he concentrated more on stuff before I was sick than when I was sick -we kept getting sidetracked and I had a few minor seizures, which didn't help with anyone's concentration. So with the afternoon well advanced and no-one fed, he finally sat back and told me what he thought.

"I think you have a variant of Chronic Fatigue Syndrome.."

(whaa...?)

"...and none of the treatments for it work..."  (I nodded, speechless. It is known there is nothing you can do for CFS) 

"...except ours..."

He went on to explain that there are some variants of CFS that present with right-sided weakness, facial droop, seizures and pretty much all of the symptoms I had presented with (except the drug reactions). He invited me to Google it.

I did, of course and I found this piece, which is excerpted below. I have bolded the part that I think pertains to my symptoms:

Research on subgroups of CFS is underway, but is still in very early stages. To date, however, clinical experience and limited data suggest that subgroups of CFS may include the following:

• Post-ADD CFS: Young adults who had attention-deficit disorder as children, who have flipped from hyperactivity to fatigue. Such patients have severe hypersomnolence (sleeping too much, sleeping any time or anywhere). Such patients respond well to psychostimulants.
• Neurological CFS: Patients have more severe cognitive symptoms than patients in the other groups, including trouble thinking, remembering, and paying attention. While cognitive difficulties affect the vast majority of patients with CFS, this group experiences significantly more severe symptoms. Visual-spatial problems are common as are sensitivities to light and noise. Other symptoms in this group include seizure-like episodes and other abnormalities suggestive of temporal lobe seizures. Patients in this group tend to have severe sleep problems in which they never achieve stages 3 or 4 of the sleep cycle, awaken unrefreshed, and respond well to sleep-improving drugs.
• Post-viral CFS versus gradual-onset CFS: According to some experts, an estimated 70% of patients are healthy until a particular illness strikes at a definite time. In gradual-onset patients, however, symptoms develop gradually, and patients are unable to recall any specific viral or infectious illness that initiated the process.

Further delving into my medical records, which I had brought with me, uncovered some unusually high titers for Epstein Barr (AKA infectious mononeucleosis AKA Glandular fever), which #26 had uncovered almost two years ago (but done nothing). #30 said that many people with CFS have antibody profiles that look like mine.

Then #30 went on to explain that their treatment for CFS is a structured regimen of exercise therapy and nutritional support, which would have to be undertaken diligently for several weeks before any results would start to show.

Now I have no problem starting a monitored exercise program. I would love to lose a bit of weight and my response to exercise has been a bit ...um ...unpredictable in the past. I was fired from Physical Therapy for having too many seizures in their office.  But I asked the Big Question anyway (already knowing the answer):

"Could I do this program near my home, or does it have to be in the hospital?"

"It has to be here, in the hospital"

Fuck. I was afraid he would say that.

Here is my problem: Himself and myself are (legal) immigrants with two special-needs kids. We have no family or close friends nearby who can help us. The hospital is two hours away, only accessible via public transport and there is no-one who can accompany me on these trips. Therefore, if I go to the hospital, do my thing and then have a massive seizure on the NYC subway going home (or there!), I am basically screwed. -An epileptic lady I once struck up a conversation with on the subway said that if you have a fit on the subway, they call 911 on on your mobile phone and then take off with all your jewelry and belongings. At least they call 911!

Even supposing I don't have a fit: Grace gets on her bus at 9am and Joe gets off his bus at 3:10pm:

Allow an optimistic two hours to get to the hospital: 11:am

Allow 40 minutes for hanging around, getting registered and prepared etc: 11:40am

Allow 40 minutes to do the exercise program: 12:20 am

One hour (at least) cool-down and monitoring: 1:20pm

Two hours to get home and discover a hysterical Joe on the doorstep: 3:20pm

...and all this is assuming no problems or delays. There is no way I can do it.

Himself has been good about working from home on days when I have to schlep into the city for a doctor's appointment, but he can't do it three days a week for three months. And there is the other question:  What if I am in the hospital, and I get a call from the school, that Grace has dislocated a hip, or Joe has had a meltdown?  I will be two hours away and Himself -if he is at work- will be over an hour away in a different direction. There is on-one locally who would be able to deal with either of them under those or similar conditions.

That won't do.

In a way, I am stressing out prematurely about this. I had seven or eight vials of blood taken yesterday for #30 to review. Maybe he will find something not indicative of CFS therein and will change his treatment plan?

I guess we will wait and see....

Another Day, Another Doctor

I am going to visit a new doctor today. This will be #30 as counted in this blog (but #32 actually, as I left out two in the initial count).

This guy -so far- seems a little bit different: First of all, he called me before the initial appointment, asked many questions about my condition and spoke to me at length. He asked me to send him copies of bloodwork and other tests for review before the appointment.

...and  then  ...THEN he said he thought he might be able to figure out the problem.

WOW!

Most doctors just look at me -like I'm mental (although maybe he was doing that -hard to tell over the phone) and tell me to see ...someone else (doesn't matter who. ANYONE but them!)

But this guy... He said he had some ideas. 

I kinda wish he hadn't said that.

Because now my old stalker: Hope, has been all over me like a rash.

Maybe this guy will be the one to make Hope finally go away?

Or maybe he will have the answer?

I feel right now this guy is my last shot. I know that probably isn't logical, but feelings seldom are.

I will let you know...