one doctor at a time (and maybe more)

[David Staup]

the following is a responce to a post on a mitochondrial desease forum that I thought you all would find interesting:

" Great information by reputable sources! Wow! As a doctor who has prescribed
a lot of stains, reading these was very enlightening, actually I have to admit a
bit shocking. How can it be that this info. Is not getting out there???? Do
you know that docs are often given financial incentives to get cholesterol
levels down really low? I used to receive a monthly scorecard with one of the
"quality" indicators being how many of my diabetic patients had their LDL
cholesterol down to less than 100? This was part of how my bonus was
calculated. Obviously makes no sense. Too many administrators with nothing
better to do! The more I think about it, the more wrong it seems. I am not
practicing right now, but I am going to think about this more and consider
trying to impress this information on my colleagues. I don't think statins
should be withdrawn from the market, but we need to reevaluate why and to whom
we are prescribing them. "Do no harm.""


this was my post that got this responce:

> > OH yes
> >
> > see here:
> > "http://www.spacedoc.com/
> > left side list of menues select statin drugs, then statin side effects, then
mitochondria. there are several articles.
> >
> > and here:
> >
> > Statin Adverse Effects: A Review of the Literature and Evidence for a
Mitochondrial Mechanism
> >
> > "*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2849981/
> >
> > well clearly some are more suseptable but there is also a much higher
incidence of adverse effects than the drug companies would have you believe just
as the percentage of people who benifit from statins is much lower and they only
benifit from the anti-inflamatory effect of statins..not from lowering
cholesterol.
> >
> > see here:
> >
> >" *http://www.mayoclinic.org/medicalprofs/statin-intolerance-clinic.html
> >
> > and here:
> >
> >
"*http://mayoresearch.mayo.edu/mayo/research/ker_unit/upload/StatinDecAid_AVG_Mayo\
.pdf
> >
> > the drug companies avertise the "relative risk" reduction which in the
example shown would be 20% while only 2% benifit actually!
> >
> > as for the rhabdo...been there done that, treated myself with fluids and
electrolytes which I continue to this day.
> >
> > David


David

[Nancy W]

Bravo, David!

[gladaralyn]

Having grown up around Mayo MN, and received their nursing ed, I returned there from my now WA home 2 yrs ago. In fact, my primary MD there is a cardiologist [my mother's primary as well]. But he didn't mention this 'Statin Intolerance Clinic'. The hepatic MDs verbally mentioned "the event of 2004", but didn't mention that 'event' [my wk of statins] in their written report.

I took 40mg zocor for only 1 wk in 2004; stopped due to severe rhabdo and LFTs >500. Weakness began to develope thereafter, but I kept working as an ICU nurse. Then, in 2008, I had MRSA UTI, which flattened me out. Due to my liver status, vanco was not an option. Infectious disease docs and nuturopathic docs had me on bactrim and high-dose grapefruit seed exract, with clean urine cultures within a week.
However, the weakness persisted and advanced. I haven't been able to work since Feb 2008, due to frequent falls, unable to hold my head up > 1hr [myasthenia gravis tests negative], and can't feel my legs if sitting or standing for > 15min.
Liver continues to flare if any HFCS, tylenol, etc. Most importantly, am now bedridden with upper and lower ext. neuropathy, severe weakness, and severe bone pain.
Thus: Dr. Gravelly's testimony/symptoms is the ONLY explanation which sheds any light on my predicament.

BTW: was unable to get the Mayo pdf. cited in your/David's note to load.
Any ideas on how to get it,
and re when this Statin Intolerance Clinic was started would be appreciated.
Also: Dr. Gravelly mentions 'receiving multiple emails': any idea how to reach him?
I'm not sure I'll be around much longer, in that I can't seem to find any MDs who will even consider 'mitochondrial damage', etc. All claim statins taken 7yrs ago couldn't be implicated.
Would also like to ask Dr. Gravelly if he thinks his recent improvement might have something to do with trying the 'PQQ'.
I tried it for 3 months -Jan-Mar 2011- , but actually seem to have become much worse. So am wondering if the 'mitochondrial regeneration' is necessarily a good thing IF the DNA has been damaged: ie, might PQQ simply speed up the 'early aging'?
I'm new here, with this being my first posting. Please forgive me if asking too much.
Just that I had hoped to turn this demise around: only 59, with a single child dtr: really hope to stick around for her.
Thnx for any feedback/ideas.

[David Staup]

gladaralyn

sorry it took so long to respong but I spend most of my time on a mito board. I suggest, first, that you don't mention the statin connection to doctors and go mainly from the mito angle...you get less resistance.
first read on the main site here about the mito connection

then join this group:
"http://health.groups.yahoo.com/group/mitoldies/

remember to remove the " at the beginning

as for the pdf make sure that you have the most current adobe reader:

"http://get.adobe.com/reader/


as for when the statin intolerance clinic started the first post here about it was june 2010 I suspect it was not to much before then

Dr Graveline is getting older and experiencing more and more the effects so is not actively corresponding with new victims

your best hope for (partial) recovery is a multi-step approach that includes rest and recovery, supplimrnts (search this site with the search function), and then very slowly rebuilding your stamina.

I myself suspect that pqq may help but only if taken at peak condition, after recovery and while working an stamina.

to make it easier in your search I suggest the following suppliments at least

ubiquinol
d- ribose
vit b6, b12, folic acid, niacinamide (not much niacin) plus a good b100
vit e, a
high dose Vitc ( 6-10 grams split into 3 doses per day)
plus mineral suppliments

those make a good start.

also make sure of all other factors that effect metabolism such as thyroid and adrenal function.


David

[David Staup]

one more thing about statin mito...it can be relapsing-remitting like MS which has mito at root and ME/CFS also mito

see this google search for plenty on that

"http://www.google.com/search?source=ig&hl=en&rlz=&q=relapsing+remitting+mitochondrial+disease&oq=relapsing+remitting+mitochondrial+disease&aq=f&aqi=&aql=&gs_sm=e&gs_upl=3484l31109l0l33484l41l41l0l30l11l0l219l1189l5.5.1l11l0

[gladaralyn]

I will proceed as soon as i can.
Heading to yet another naturopathic doc:
Many supplements seem to make the chronic nausea worse.
BTW: I also was given Zometa, the IV strongest bisphosphonate for sudden-onset of osteoporosis with vertebral compression fractures within 6mo of stain trail/tragedy.
The zometa was full cancer dosage, but only annually 3 yrs in a row, 2004-2006.
Now a major issue in that such drugs [from weaker oral fosamax on up to zometa] 'work' by refusing to let old bone be removed, and thus prevent new bone from forming.
Recent issue is sudden crumbling of my teeth! Most dentists wouldn't touch them; some say only option is mouth-wide root canals;
whereas naturopathic dentists say NO ROOT CANALS, citing root canals leave dead tissue in the body, which induce tiny 'L-form' bits of aneorobic bacteria, which can/usually do travel around and also cause mitochondrial damage.
But: if we try pulling these teeth, high likelihood of osteonecrosis.
Some [oral surgeon assoc.] say zometa effect should be wearking off; but no one can come up with any other reason for my long bone pain than zometa persistent effect...
so what to do.
At least naturopathic dentist knew right away that my teeth were indicative of my systemic cellular/mitochondrial status. He stopped any dental work until if/when we're able to affect the celullar demise.
Thus the new well known naturopath in Tacoma WA.

[David Staup]

I'm sure Nancy will offer some suggestions she went naturopathic and is pleased with the results.