A Trip to the Holtorf Medical Center – From Cort Johnson
The Patient - Higher functioning ME/CFS patient with high sensitivities to chemicals,
plants, some foods etc. Main symptoms - stiffened, tightened , painful muscles
particularly after exercise, fatigue, racing mind, problems relaxing, some
muscle and joint, neck and head pain, some IBS, some heart racing, unrefreshing sleep, heavy feeling limbs, anxiousness, cognitive problems
more evident during speaking, low libido. Meet the tender point criteria for
fibromyalgia but fatigue is the major problem. Sensitivities have kept me from
working for the past five years. React very well to most treatments but
higher energy levels are met with increased sensitivities, jitteriness,
anxiousness, aching joints and ultimately, if continued, flu-like feelings
and fatigue.
Prior tests show low normal aerobic capacity, blunted cortisol response, no
growth hormone response to exercise, delta intrusions during sleep, high
sleepiness during day, two gut parasites (pathogen-free otherwise - never
tested for Lyme), altered blood CO2 levels, very low sed rate., low
glutathione. Universal reactor to substances. Neuropysch tests show several
moderate abnormalities.
Background -
I don’t get to see doctors very often – the last one was about five years
ago. That was a rather short term trial with Dr. Cheney that ended with me
going bankrupt at about the time he was getting a heart transplant. Before
that there was one about five years earlier.
This time I tried out one of the hot new approaches to ME/CFS. I went to Dr.
Holtorf’s clinic in Southern California. This is the clinic that spawned the
Fibro Fatigue Centers that have spread across the country. I wasn’t able to
see Dr. Holtorf – he wasn’t accepting new patients – so I saw another
doctor.
The Hormone Question - Dr. Holtorf and the Fibro Fatigue Centers cover many different aspects of
ME/CFS; they look at infection, the immune system and metabolism and so
forth but they are known for their emphasis on the endocrine system. Both
they and Dr. Teitelbaum, who is now director of the Fibro-Fatigue Centers,
often treat small hormonal irregularities (or sometimes none discernible at
all) fairly aggressively.
So far as I can tell this is something of a minority viewpoint amongst
ME/CFS physicians. The only argument the physician experts on a panel at the
PANDORA Patient Conference in 2007 got into
regarded how aggressively to treat the thyroid. It ended with most of the
experts stating they didn’t give ME/CFS patients thyroid unless there were
obvious abnormalities.
I believe this is because over treatment of the thyroid (or I assume any
other gland) can turn it off permanently and leave you dependent on hormone
supplements. Hormonal treatments can also accelerate the growth of hormone
sensitive cancers. In fact, significant recent drops in breast cancer deaths
have been entirely due to reduced estrogen use in women who’d been taking it
to fight problems associated with menopause. The estrogen did and didn’t
work; it did make many women feel better but it also killed some of them -
hormones are obviously nothing to mess around with.
(In his latest version of From Fatigued to Fantastic Dr. Teitelbaum stated
he believes the breast cancer problem was due to the kind of synthetic
estrogen used. He asserts there is no evidence that the bio-identical
estrogen he uses would cause that kind of effect; in fact he believes the
opposite may occur.)
Dr. Teitelbaum, however, reports quite high success rates with his protocol; higher
than I have seen before and Mary Shomo has written several books
highlighting how effective hormonal treatment was for her and can be for
others. So there is good evidence that hormonal treatments can help. It’s
encouraging, as well, that Dr. Teitelbaum believes you only need to be on
hormone treatment long enough to lift your body out of the cycle of
dysfunction it has gotten into.
Still I am very leery about hormones. Both my father and uncle have had
prostate cancer – a hormone sensitive cancer - and I’d had extensive thyroid
tests about 15 years earlier. My tests had bounced around enough that my
physician had sent me to a thyroid specialist who - using the best
technology known - found nothing abnormal. Still he recommended a
trial of low dose thyroid – which I’d tried – and had made me jittery.
I’d looked at symptoms of low thyroid before I came in; I had maybe forty
percent of them; dry skin (since birth), low temperature, trouble staying
warm, etc. But then again I had a lot of symptoms – and I wondered if I’d
fit a good portion of any profile – the fact that I fit some of those of
those thyroid didn’t impress me at all.
Visit #1 -
I watch these doctors like a hawk and while we’ve generally gotten along
fine my relationship with them has not always been good. I walked out of one
doctors office 30 minutes into my first appointment (without paying) and I
got almost got dismissed from Dr. Cheney’s practice at one point after I,
with my financial status deteriorating, vociferously complained about some
tests he’d had me take.
So here I was, skeptical as always and on edge regarding this hormonal
issue, but excited about seeing a physician again. The Fibro Fatigue Centers
boast of the extra time they spend on their patients – and they do relative
to most physicians; this was an hour appointment ($395) – but it still flew
by. It seems like it’s impossible to satisfactorily fit an exam, a long
questionnaire and a disease like ME/CFS into an hour appointment. But by the
end of the appointment I got the feeling that an hour was probably
sufficient for this approach.
This was because I got the sense that the doctor was more interested in
whether I fit a profile than the ins and outs of my cases. From a personal
perspective this was a bit disillusioning. I had a list of things I wanted
to cover; my strange reaction to energy inducing treatments; my
post-exertional fatigue – in particular the stiffened muscles I get; the
positive parasite tests I’d had done, the painful spots on muscles and bones
I had all over my body, and more. True to form I’d left my cheat sheet in
the car but I still managed to hit most of them but none of them really
elicited any reactions. (I left the cheat sheet in the car because I was
racing to get the appointment early because I’d left the 26 page
questionnaire at home.)
He flipped through my old tests quite quickly. Looking over my old
(negative?) thyroid tests he said “Oh I know you have thyroid problems’. He
re-iterated that during the physical exam. My feeble comeback that ‘I tried
thyroid and it didn’t work’ didn’t phase him at all. Nor did my comment
about not having all the symptoms – that wasn’t necessary he said.
He was interested in the high mercury readings in one test (90th percentile)
stating this could be a big problem. (They were high in relation to people
with no mercury fillings in their mouth. Relative to the rest of the
population they were normal). He was also interested in an episode in which
I’d experienced increased well being after have a gold crown lifted off a
hidden filling. (More about that in another blog).
The physical exam confirmed his supposition of thyroid problems; I had dry
skin, vertical ridges on my nails, low body temp (98.1), lot’s of cracked
skin on my heels and probably more.
I only had enough money to get a minimum number of tests done. He was
definitely not enchanted in my budgetary difficulties but drew up a minimum
list of tests we could start with; several thyroid, testosterone, heavy
metal, cortisol, fibrinogen, a metabolic panel, cholesterol, and PSA test.
Interlude - My central problem is not finding something that will help me; I
have lots of things that will help me. My main problem lies in tolerating
the energy boost that each of them bring. I can usually use a treatment just
a couple of times before it gets my energy flowing well, my mind feeling
clear and my muscles feeling loose and supple and then I fall apart; I
become anxious and jittery, can’t concentrate, feel fluey, etc. and have to
stop.
It’s been hard to get physicians to wrap their minds around this problem and
this doctor, given his time constraints and who knows what else - clearly
had no desire to do so. Even Dr. Cheney – the only physician I knew of who’d
actually spoken of it – pushed this problem aside saying “Well we’ll have to
give you something that doesn’t give you energy”. (What an idea!) Even
though I reiterated again and again that it was my sole reason for seeing
him a year later he seemed to lose track of it completely.
I bring this up because even after I tell these physicians that I’ve tried
everything under the sun and they all cause this problem they continue to
push their standard treatments at me as if they will be different. I went
through Dr. Cheney’s three part standard beginning protocol registering the
same reaction to everything when we got to the recommended supplements here
we went again – out rolled the same old stuff. With money limiting my
ability to get tests done I wasn’t about to spend a substantial amount of
money on supplements at this point.
Supplement Recommendations - He recommended I try D-ribose (tried that –
same outcome), Dr. Teitelbaum’s Energizing Formula (tried many formulas – no
effect), melatonin (tried once – no effect) and something called Oncozyme
(broccoli derivative – never heard of, never tried) and he proposed I take a
B-12 plus shot – something he felt could be quite significant for me.
I declined yet another multi-vitamin/nutrient formula ($65! - $39 at
Prohealth.com) and took the melatonin ($15 – $7.00 at Prohealth.com) and the
broccoli derivative ($34!). I was curious about the B-12 shot; it seems to
help a lot of people but the only time I’d tried it I’d had one of my very,
very few negative reactions to supplements. I’d had to self administer it,
however, and I’d always wondered if I’d done something wrong.
A Failure. Apparently I’d hadn’t as the B-12 shot first
made me nauseous and then disoriented. Afterwards at the testing lab when
the receptionist told me to go to Room One behind her I walked out of the
office and wandered up and down the hallway looking for it. When I came back
into the office she pointed at the door leading into the lab. Then I followed an
assistant into his room (not Room One). After she took my blood and pointed
the way out I said thank you and walked into the bathroom. I think I was
lucky to make it back to my car – B-12 shots do not work for me.
A Success. The melatonin surprisingly enough did. I’d tried it before with
no results but this brand – a sublingual one from Prohealth was quite
potent. I can probably count the days I’ve woken up relaxed and refreshed
over the past 25 years on one hand – and the next day was one of them. And
it worked again and again – I didn’t sleep more – I still woke up at about 5:30
am but I felt relaxed and calm – and what a nice feeling that was. It even
helped with my libido a bit. After a couple of days, however, as with
everything else – my reaction reared its ugly head again and I had to stop
it on a consistent basis.
Conclusion - I was not particularly encouraged by
this visit. Even though I believed the physician when he said he’d helped a
lot of people my case is somewhat unusual with my negative reaction to
energy inducing treatments and my strong sensitivities. Since my bad
reaction to ‘energy’ limits me from progressing on any treatment it is my
essential problem but he paid little attention to it. I would have been more
encouraged if he’d understood my focus on this issues and tried to address
it more fully. He, like other physicians, essentially pushed it aside as he
outlined his protocol. He did say he thought that it was due to a system out
of balance which I've heard before and does make sense.
It was nice to have such a nice reaction to melatonin and I’ll put it in my
bag of occasionally used but useful tricks against ME/CFS. The markup on the
supplements, while small relative to the total bill was somewhat unsettling.
Will the highly touted and apparently highly successful Holtorf system work in my case?
This is just the beginning - we have a long way to go. Only time will tell.
Next appointment is in February.
1/06/08
A Trip to the Holtorf Center: Session 2
I sat down at the doctors desk and waited chilled in the office.
To my right was a plaque advertising the benefits of mesotherapy (fat
injections!) - not a great start but then again I was in Southern
California. I was on my way to grab another sweater when the doctor swept
in; he advised I skip the sweater because we only had so much time. I agreed
and we were off.
I told him the B-12 injection made me worse and the melatonin was great
except that as soon as my energy rose I had my usual reaction to
energy - painful joints, jitteriness, trouble speaking, flu-like
feelings. He suggested
that the melatonin was not causing that and to keep taking it. This raised
my hackles a bit - and made me
wonder if he'd read my file before I came in - this reaction was, after all,
the reason I was seeing him. I went over this strange
reaction with him and later we agreed to pulse the melatonin. He said that
getting good sleep was really critical and many people had been helped with
the sublingual melatonin from Prohealth (Prohealth.com)
Laboratory Followup:
We got down to my tests; He told me that PSA/metabolic panel/lipid
panel/heavy metals/CBC panels/ fibrinogen were all normal. (Red blood cell
count, hemoglobin, hematocrit were just barely high.)
He said based on my symptoms and lab results (T3-402/T3, reverse-21) that I
just had a little thyroid issue but I had a big issue with my adrenal glands
(total cortisol was 'in range' but at at the very lowest (6; 5-21). The free
cortisol was 'in range' as well but instead of .21 (range .07-.93) he wanted
it about 1.0. if I understood him correctly.) He said it was very, very low
and seemed a little concerned about it; he said it was hard to get it up
with my low levels and that his goal was to get me off of cortisol. He
recommended a low dose that would not cause side effects.
My testosterone was somewhat low as well. This was confusing because the
test said my testosterone total and free were both high but I was clearly
missing something (probably a decimal point or two!) since it wasn't anyway
near normal (440; range 2-45, 65.6; range 0.1-6.4). He scribbled over one of
the reference ranges and put 35-155. I assume my first testosterone reading
was actually 4? and the second was at the low end of normal. In any case he
thought I needed some but not alot.
He recommended Diflucan and an anti-yeast diet for yeast (white appearing
tongue and throat). Later I asked him about dry eyes and the constant nasal
drip and he felt that was probably due to yeast as well and he added fish
oil for the dry eyes.
I had had a parasite test done several years ago; it was positive for an
entamoeba and giardia. I had been unable to tolerate the medication (flagyl,
something else) but it had boosted my libido dramatically. He said the tests
were less than reliable particularly regarding giardia (false negatives) and
recommended a short term trial of tendonax.
I wasn't able to afford the NK cell test but he was sure I had immune issues
and for that he recommended myatake D.
Given my money situation we settled on an appointment in three months rather
than two. We set up several hormone tests to check on how my body was
responding to them.
Cost: The visit cost $395. The supplements were another matter; over $400 in
supplements for three months, almost half of it taken up with something
called adrenal repair. Given my financial problems I decided to take one
bottle of adrenal repair and look for the rest on the internet from a
reputable company (probably Prohealth). The hormones cost another $300; the
treatment package for three months was about $750 or almost $200 a month and
there's still the anti-yeast and anti-parasitic to get.
Conclusion: I thought it was a good visit. I didn't feel rushed and I got
all my questions answered to my satisfaction. The hormone issues were new to
me and he provided a comprehensive treatment plan designed to address them,
the yeast and parasite infections and immune problems. I was happy at the
way he was able to accommodate me financially. I reflected that Dr. Cheney
had documented lowered cortisol levels after an exercise test years early
and had done nothing about them and wondered if they were a key. Of course
only time will tell. Thus far the Holtorf approach
seems like a good one.
They have a compounding pharmacy at the facility and I asked the pharmacist
why the compounding? He said they could produce lower doses than the
pharmaceutical companies do.
I asked someone in the Lobby what their experience was. This woman had had
terrible fatigue. The doctor had bumped her hormones up to no avail. Then a
heavy metals test indicated her mercury levels were off the chart. She had
done the same thing I had - eaten alot of fish. Going off the fish and
having some fillings replaced had helped enormously. For her the problem was mercury!
She was very happy with her experience at the clinic.
I plan to wait at least a month before starting the program. I'm doing the
Ashok Gupta's Amygdala Retraining program and having some success with it. I
want to give that program more of a shot before I add something else. You
can
read a blog
on on how my Amygdala Retraining program is going.
Aug 1-7, 08 - I'd put off doing Holtorf's
protocol for 6 months but when I realized I had $300 of medications
(thyroid, cortisol and testerone) that were about to expire I started giving
them a try. It was just a wee bit of thyroid (he said), a low amount of
testerone and a pretty strong shot of cortisol I believe. I rubbed that
testosterone into my shoulders, took the thyroid and I was up! Later I took
the cortisol with a meal and I pretty much stayed much improved all day
long.
Exercise has been a real problem for me since I got to LV; it seems that
when I start walking around I run into my difficulties immediately; the
physical sensations, the shortened breath, the rushing thoughts. I took those
pills and all that stuff diminished greatly (!) and stayed that way for most
of the day - a very nice first step with Holtof.
Repeat courses of the Holtorf protocol, however, have not been as effective.
This is a standard pattern for me; a very good early result following by
diminishing results over time - often ending in negative consequences. Today
I started getting the jitters - a common problem for me when I stay on
medications that help. I'll probably cut down on the thyroid and
testosterone and see what happens.
I also started the anti-parastic drug - something that's of real interest to
me since my one stab at it years earlier really increased my libido until
negative side effects stopped my course with it. I didn't notice any
substantial increase in libido today but my energy levels were definitely
increased and I actually felt really good. This came on top of a day when I
woke up at about 5 am and couldn't get back to sleep.
For people who wonder how I could have such a quick result - that's just
basically been my pattern for the last 15 years. Around 1991 I went from
seeing no results to anything to very fast results from just about
everything - my system seems to react very quickly to low levels of anything
I try.
Anyway a good week for Holtorf. I'm pulsing the cortisol - probably
unnecessarily - because I'm worried about adrenal suppression. I'll keep on
course with the anti-parasitic and probably add the anti-fungal next week.
6/28/08 - the thyroid didn't work out - made me
jittery. I'm now trying the cortisol regularly. I actually noticed some
diminuition in chemical sensitivities after starting the anti-yeast
medication (fluconadazonale??) a very unusual thing to happen with me. It
was quite noticeable. I've only taken the testosterone intermittently
- not much happening with that.
I noticed a definite increase in energy and calmness after taking the
anti-parasitic drug (Tindamax). I hope to do another round of Tindamax and
should make an appointment to redo the program - and do it right - as the
life span of the bioidentical hormones is over (!) (About three months!).
(I have not with my intermittent attention towards it given this
program the shot it deserves obviously).
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