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.
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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