Oh! The joy of being a zebra!

[GinaD]

First. To those who don't 'get' the 'zebra' thing:

Here's the story/joke.

So, you're on your back in Central Park NYC looking at the night sky (of course, -- my insert here -- if you're in NYC you won't be able to see any stars. Maybe the moon. IF its full.) Anyway. . you're in Central Park, on your back, gazing at the full moon when you hear the sound of galloping hoof beats. This is Central Park, so you "know" its a horse galloping past (hopefully under the control of someone who knows where the horses are and are not allowed so he's not going to be galloping onto you .)

But . . . it just might be a zebra. And the difference between a good doctor and a bad doctor is partly in their willingness to recognize that 1 time in a million it might be a zebra, not a horse. (After all, the Central Park Zoo is near by and on some nights some staff members may have been partying pre work.)

I'm a zebra. As one doctor (in whose presence I have gone into anaphalaxis and, on another occasion, had a seizure,) said "Gina. I do perfectly normal, reasonable interventions with your body. And you react in perfectly abnormal, unreasonable ways!"

(I no longer see this doc as his intonation made it clear he thought these abnormal reactions were intentional.) (And if so, how the h*** do I do that? Think of the fortune I could make if I could figure out how I consciously do this and patent it? All those students looking to postpone their exams? All those accused wishing to postpone their arraignments? )

But last night, which was the "prep" night for this morning's colonoscopy, I developed hives and throat and mouth swelling and itching. This began at 3:45 EST, which is a horrid time to try to phone a doc in the US as the offices staff has stopped picking up the phone so they can leave on time, but the answering service has not yet started fielding the calls.

But eventually, with me and my husband working 2 phones, I eventually got advice indirectly from my GP's office to get me to the ER associated with the hospital where I was to have the colonoscopy.

Which was packed. Mostly, as I judgementally observed, (in this land where we are repeated told has "the best health care system in the world") with patients who really did not have emergencies but were there just to see a doctor for free.

But the triage staff examined me and judged I was borderline anaphalactic and fast tracked me to the ER doc. (we were out in 1:30. Some kind of record!)

. . . with instructions by the doc to discontinue the prep, take benadryl round the clock and to not report to the colonoscopy as "your immune system is well triggered. Like it has drawn its sword and is now looking for a fight. With your multiple drug allergies this makes it more likely that you will react with something your body will encounter and if you're under, you would be in grave danger of having that throat swelling get worse and block your airway."

So, on the way home, after I gulped some benadryl, (my dose was cheap. The hospital's pill would have cost our insurance something like $100. Again -- best health care in the world???) I had a nice burger and baked potato to satisfy the tummy which had been growling all day due to the intake of clear liquids only. (I kept trying to explain to my stomach that we were ingesting all the calories needed for survival, but my stomach was stubbornly ignoring me and demanding solid food.)

So -- back home. Happy tummy. BP back to functional limits so I can stand up and walk. Rash dissipating. Throat and mouth no longer swelling and itchy.

And a message on my answering machine from the gastro's office saying it is "impossible to get hives from the Miralax and that I should continue the prep and report for my procedure on time. (which was, as I type this, 2 hours ago.)

Of course, the fine print on the Miralax bottle says that hives and itching are rare, but can happen with Miralax. And if one does develop hives and itching to stop the prep, and report to the ER.

So . . . I fully expect to have to "blame" the ER doc (as he anticipated.)

Ain't life grand when you're a zebra? (Thanks for reading my rant. I thought you would be a sympathetic audience.)

[MaryF Administrator]

Thank you for writing this, you certainly have not had a systemic sense of humour failure! My own drug allergies are pretty spectacular at times!

urban75.org/brixton/history...

MaryF

[GinaD in reply to MaryF]

Perfect! If zebras were seen in Briton, then there must be some/one in West Virginia!

[GinaD]

This morning's series of doc phone calls: ( how I hate that ' on hold' music!) and. . . Hematologist confirms bridging back to warfarin procedure. Gastro's office tells me to see if the GP still wants me to have the procedure, given that I am a-symptomatic. GP's office wants me to see the gastro to see if he can do the procedure given that I reacted to the dulcolax and/or the miralax and enemas will only half clean me out.

Sigh.

I've got a call in to my insurance company nurse for their opinion. I know that here in the US health insurance companies have a bad rep, but my personal experience is that what is cheapest for them in the long run is also best for my health.

I could call my allergist but that will just spread my frustration to him. He has tried before to tell docs that an allergist should pre-approve meds I take, but he is nearly always ignored.

[Lure2]

Hi Gina,

I do agree with the first sentence of Marys answer! I am only allergic to insects. And myself ofcourse. BUT I am also a zebra. There are not many of them here in Sweden. Less than in the US probably.

Oh how I wish I was English when I am on this site. I had to use my school dictionary and I am afraid that sometimes I miss important things and answer a bit rubbish (wrong word I guess) . I wonder Gina what will happen with your colonoscopy now?

I hope it will be OK with your different doctors. I understand it can be difficult for you. Hope one of them is reliable and that you can talk to him.

Best wishes from Kerstin

[GinaD]

I decided to stop by my GP's office on my way to the grocery and explain my " this doctor or that doctor" question. The receptionist at her office and I agreed that since I do not have any stomach symptoms that I will discuss this , " should I or should I not" colonoscopy issue with her at my next regular appointment, which is in June.

I refused this colonoscopy screening for years as I thought the cost benefit analysis did not make sense given that I would have to temporarily stop the warfarin. But, since I did fine with the bridging for my hip surgery a few months ago, I reasoned I could no longer use this as an excuse to avoid that charming test.

So I guess now I switch to the multiple drug allergy excuse? because, really, since I have no symptoms of any GI disturbance, I really do suspect this procedure fails the cost/benefit analysis.

[designer16]

I am a Zebra also. I feel like I have to apologize for my body being so weird all the time. I have finally got the doctors her in the US to except my diagnosis of APS. It makes me so upset & angry that I don't even want to go anymore. Why don't they just help us & look at things from another perspective.

As far as the colonoscopy I am not able to do it either, so my dr. Gives the little card for a stool test. He said it would detect something abnormal.. Love your story & it is so true.

Designer16

[loretta1106]

I also live in NYC/Manhattan and totally understand the whole problem of the "answering machine" problems with trying to contact a doctor today--impossible. I am, however, impressed that the ER recognized that your autoimmune system was "well triggered." I think the bottom line is that we have to be proactive and recognize that sometimes we can tell that something is wrong despite what the doctor says because basically we may be more educated about our autoimmune system that most doctors!!

[GinaD in reply to loretta1106]

(Irony alert ahead!)

Why Loretta! Are you implying, or outright saying, that sometimes you know more about autoimmunity then whatever doctor may be treating you at the moment?!

We'll I'll be . . . .

[loretta1106 in reply to GinaD]

I do indeed. My internist (temporary) has no clue re APS and never heard of Plaquenil?? Very scary indeed. He said he'd have to research it - oy oy!

[Hidden]

"Of course, the fine print on the Miralax bottle says that hives and itching are rare, but can happen with Miralax. And if one does develop hives and itching to stop the prep, and report to the ER. "

I had a reaction to MoviPrep (prep solution) as well after the procedure was done. Also my gut did not clean out as good as other "normies" (non-zebra) would have done. But the procedure went ahead. I'm not sure if my reaction was from the solution (likely) or from the procedure itself (e.g. gut tissue would be traumatised and tampered with and any substance / bacteria ended up in my blood stream?) Not good!! anyway x

[overnighthearingloss]

I missed this post. The zebra herd is growing.

I recently had to have a colonoscopy as well. OMG if they told us all that was on the cards at the outset I dont know how we would have reacted. I had to attend 3 times before my procedure went ahead. On different meds to you but first time with a home prep for a local anaesthetic, it left me dangerously dehydrated. (With known kidney issues). Abandoned due to major discomfort. They decided it had to be under a general so hospital admittance was necessary. They booked No2.

No2. They didnt start the prep early enough and procedure had to be cancelled at last minute. No3. They again started procedure late, seemingly not learning from 2 failed previous attempts but fortunately were able to proceed this time.

Told all seems normal, so it just seems to have added to my sometimes growing scepticism that we all really understand our own conditions better than 'many' of the 'professionals' who seemingly have lost their altruistic intention to aid patients and have become beaten into submission of doing a job with an unending list of sickos.

Its why i am not closed minded to the often considered wooly holistic therapies. At least they attempt to find a solution for the whole thing

[GinaD in reply to overnighthearingloss]

The zebra thing is more then a joke. I was once "fired" from a practice beecause my LDL and HDL cholesterol levels went from low to very high within a few months -- the months immediately after going on a gluten free diet.

So here I was, feeling better and more energetic then I had all my life -- and the doc wants me to start statins for life.

I was resistent. I suggested that we re-do the test? No, she assured me the results were accurate. I mused that since my tummy was noticibly better with less bloating and gas that maybe --- just maybe -- after years of not absorbing all the fats and omega acids I needed, that my gut had the signel to grab every fat it could, and if I just leave things alone, some undiscovered but probable biofeedback loop would kick in and my cholesterol would return to their former low levels . . "if we just wait, say-- 6 months? And if my levels are still high then I'll go on the statins for life. I'm already on warfarin for life and I really don't want to add another."

She explained that her practice was rated by some organization or the other by how many compliant patients she had who took recommended medicines and tests (such as colonoscopies.) And that if I was not willing to go on statins to treat my high cholesterol levels she was going to refuse to be my doctor. Because, she continued, even i I were right, that would mean her practice would be down graded during the time it took for me to run my little experiment. " and why wait? We can get those levels on their way down tomorrow! Why wait? You're just being stubborn."

So. Bye bye to that doc.

But turns out I was right! 6 months later my cholesterol levels had returned to what the succeeding doctor called "the walk on water" level; that my low LDL and high HDL numbers were associated with the best cardiac trajectories. (But if I had started the statins I woulld have indeed been on them for life.)

So not only do some docs refuse to recognize the existence of zebras,(and perhaps ignorance is scary but ethically excusable,) but other docs may recognize the existence of zebras but refuse to treat them because then they themselves will look unconventionally" zebra-like."

[Hidden in reply to GinaD]

Statin scandal...there's loads online if you care to take a look........x

[GinaD in reply to Hidden]

A HUGE scandle. Big Pharma makes tons of money, but only a tiny treated few actually benefit.

[Hidden in reply to GinaD]

Hi I guess this MD is advised by his / her defence lawyer..it's a legal issue,,,unlikely to be about your health.

[Hidden in reply to overnighthearingloss]

"Told all seems normal, so it just seems to have added to my sometimes growing scepticism that we all really understand our own conditions better than 'many' of the 'professionals' who seemingly have lost their altruistic intention to aid patients and have become beaten into submission of doing a job with an unending list of sickos."

"Its why i am not closed minded to the often considered wooly holistic therapies. At least they attempt to find a solution for the whole thing"

Hi I agree with that.. Hate to say but I think you make a very intelligent observation x

[MariaBanelli]

This is particularly interesting Gina because I'm going through the exact same thing now. A year ago my blood analysis showed good HDL levels and low LDL. I was then diagnosed with Celiac disease and haven't touched glutens for 8 months. As well as that I have taken six months off to be in the southern Alps of France mountaineering, skiing, ice climbing and trekking. I lost 15lbs, weigh in at 115lbs, don't smoke, seldom drink and now I'm back in the UK I'm on my bike every day it doesn't rain.

This morning I got a lecture from my doctor because last weeks blood works show my LDL is now 4.50 mmol/L. 'You need to start making some lifestyle changes' she told me. I told her that I could always start smoking, stop being so active and start eating glutens again (the very poison that made me so ill) and she just ignored me and suggested I took a print out.

To be honest I was worried but after reading your post, which makes a lot of sense btw, I'm going to give it six months and then get re-tested.

Another thing on the test that concerned me is, I have virtually no vitamin D3 in my body. Having just spent 6 months at high altitude and have the tan to prove it, I have to wonder what's going on.

[GinaD in reply to MariaBanelli]

As I mentioned below, you might really profit from "Grain Brain" by Dr. Perlmutter. I don't recall him mentioning cholesterol levels and gluten free diet, but he goes into detail about how gluten and empty carbs trigger this and that hormone response which lead to chronic inflammation which leads to obesity, diabetes, senility.

But I seem to recall on one of the celiac web sites finding posts from others whose gluten free diet resulted in TEMPORARY spikes in cholesterol.

If you can find such posts maybe your doc can read them and then be a little more respective of your zebra-ness.

But good luck with the diet. There are inwardly awkward moments. Trail club friends, gathered with me around a restaurant table after a hike, feasting on the bread brought to our table and apologizing profusely for eating the bread in front of me. I smile, reassure them that "no. Go ahead. I'm fine. I'll wait for my salad." when in reality I'm inwardly SCREAMING," Are you kidding me??? You want me to join you in eating that POISON? No way Jose. Go ahead. Continue on your road to diabetes and dementia. And don't feel bad that I refuse to join you on that road."

Gina

[Hidden in reply to GinaD]

"But good luck with the diet. There are inwardly awkward moments. Trail club friends, gathered with me around a restaurant table after a hike, feasting on the bread brought to our table and apologizing profusely for eating the bread in front of me. I smile, reassure them that "no. Go ahead. I'm fine. I'll wait for my salad." when in reality I'm inwardly SCREAMING," Are you kidding me??? You want me to join you in eating that POISON? No way Jose. Go ahead. Continue on your road to diabetes and dementia. And don't feel bad that I refuse to join you on that road."

Hi Gina

I hear what you say. That's one of the reasons why I would hate to join one of those clubs..they must have a pub meal afterwards loaded with chips, fried eggs, bacons etc! Is there any point in that..? you did your great walk..did some great boost to your immune system! then stuff yourself silly with artery clogging junk and possibly a large slice of cake...x

[GinaD in reply to Hidden]

My trail Club's unofficial motto is " We hike to eat.". We often half seriously joke that we should collectively write a book detailing the best restaurants in West Virginia. there's that Greek restaurant with outside seating north of

Lansing. The Cafe Cimino, also with outside dining beside the Elk River. Gumbos. The Inn at Elk River, -- I could go on. ( Now I'm getting hungry.) But these all have excellent salads and GF main course options. ( some even have GF chocolate tortes.) Also, I have noted; those hikers who fill up on the pre-salad breads, don't have as much room for the subsequent delicious courses which follow!

[Hidden in reply to GinaD]

West V must be so stunning! Please do share some pictures if there are any?

So you do still hike with folks demolishing breads? *Chuckles* I must admit, it's nice to be with other hikers. Lovely social occasions but it sounds like a torture. x

[GinaD in reply to Hidden]

My trail club has a website and here is a link to the page which has some pictures:

kanawhatrailclub.org/blog/

I did not go on any of these hikes as my hip arthritis had just gotten too bad. But I got my new hip this past November, and now that the slick snow is gone, I'm back hiking.

[Lure2 in reply to GinaD]

Hi Gina, I have looked at your Pictures. Oh so nice people there are. I can see I would like those persons and also that country. Is it from West Virginia?

Good luck with your hiking

[GinaD in reply to Lure2]

West Virginia, the Mountain State. Our mountains are not high, but they are everywhere. And the Appalachians are the oldest mountains in the world, with the 2nd most bio diverse ecosystem, ( behind the Amazon.)

[Lure2 in reply to GinaD]

Oh. Did not know! I am going to look closely on the map. Sweden is a Beautiful country. Mountains up in the North. The archepilague is famous. We used to sail a lot. I used to ski also.

Can you hike with your hip already? Kerstin

[GinaD in reply to Lure2]

Sweden/Norway are on my bucket list.

[Lure2 in reply to GinaD]

Welcome! At that photo you look a little bit Swedish girl.

[GinaD in reply to Lure2]

100% American: part English, Welsh, Scots, French, German and American Indian, and possibly Jewish.

[Lure2 in reply to GinaD]

200 years back: only Swedish. I have dark hair though like all my relatives. Now it is grey (blame that on APS, too soon)

[Hidden in reply to GinaD]

Beautiful photos..! Thank you for sharing.

Sorry to hear about the hip. Hope you're recovering well ready to start hiking again. Your friends must miss you.

Photos look utterly divine! x

[Hidden in reply to MariaBanelli]

Answer is simple. You're likely to be a zebra..x

[overnighthearingloss]

I have never knowingly had any gluten intolerance issues, but with so many reporting such issues I am wondering whether there may be such thing as a good starting point to find out about gluten intolerance.

[GinaD]

You can check online references, such as celiac.org and celiac.com. Or, just give a gluten free diet a trial. Wheat, rye are the 2 Main harbingers. But if you want to see if the diet really works you need to go 100% GF and to do that you'll have to read labels and quiz wait staff. MSG is a notable seasoning which harbors gluten. There are web sites, aps and books which can help you navigate menus in chain restaurants.

Of course if you go gluten free know that subsequent blood tests, such as the GTT test, may yield a false negative. I have heard stories about people who need that diagnosis to satisfy insurance or disability issues and have had to deliberately go back to eating gluten, which is poisonous to them , for up to a year before those tests turn positive. Even colonoscopies, supposedly the gold standard when it comes to classic celiac diagnosis, will yield a false negative if your gut has had time to heal itself.( time taken for that depends on age-the younger, the less damage.)

So depending on how easy it is to communicate with your GP you might get that GTT test, and maybe the IGg factors tests, before the diet. But that is only necessary if you really need an authentic, doctor approved diagnosis in your chart,. My GTT, run 8 weeks after starting GF diet, was negative. But all the rheumatoid factors dropped to normal, ( the cardiolipin IG remained mildly elevated for a few years,)AND, for the first time since age 4 my hemaglobin and hematocrit rose to " boring" normal levels. It was that last blood work change that drew the most attention from my rheumy, heme and GP. They all told me to stay off gluten when they saw that change.

Why that change? Well, gluten is the unusable protein, and the cellia in your gut become inflamed and retract as they try to deal with it. ( producing a small intestine that looks like a PVC pipe instead of the shag rug it's supposed to resemble.) since the cellia are responsible for absorbing the larger elements and compounds, like iron and most of the B vitamins, your body develops deficiencies despite how healthy and nutrient dense your diet may be.

A recent book which,( Warning!) will scare the gluten and empty carbs out of your diet is"Grain Brain" by Dr. Perlmutter. Read it if you dare!

Gina