Wednesday, November 30, 2011

Pt. 8. Dr. Holtorf (Fibro and Fatigue Centers)

I can't believe I haven't written anything since August!!!! So sorry to have left any followers high and dry. I'm back though. If you haven't read any of my blogs, please start from the bottom of the page from part one. 

So, I think I have kind of mixed up my time line, but it's not that important. Sometime about 4-5 years ago I found The Fibro and Fatigue Centers which had doctors offices in many states around the U.S. The president back then was Dr. Kent Holtorf and his office was in Southern California. His specialty was the endocrine system and because he developed fibromyalgia and he layed his focus there.

 I found him through an internet search and did a bit of research on him. Made an appt., which took a number of months. He unfortunately  doesn't take insurance  but does give you a super bill to give to your insurance. I never bothered, plain too lazy and back then we could afford it. I knew the insurance company would just give me the run around and then not pay for any of it. Each visit cost us anywhere between $1500- $2500 for visit, lab, and meds (natural supplements and prescription)

He ran a truck load of blood tests on me. Many of them were tests that regular doctors don't do and when you show it to them they toss it in your face and say, it's all bullshit from a hustler who just wants your money.I disagree! There may be charlatans out there, but there are also practitioners and doctors who are not run by the drug mafia. Who are trying to make  a difference but are constantly being bulldozed by big pharma and their doctor goons.
"Don't listen to the quacks out their that just want your money," they say. "Just spend your money on insurance and all the pills we are pushing down your throat. It will make you forget all your woes....."

Anyway, after the test results came in, Dr. Holtorf sat me and my husband down and went over them with us. HE WAS THE VERY FIRST AND ONLY DOCTOR THAT EXPLAINED MY CONDITION SCIENTIFICALLY THAT MADE SENSE!!!! He even drew me diagrams on how my ATP system wasn't working and how when the body cannot produce energy, it tries harder to work and gets more run down. (Well he described it much better than that but this was the basic idea) He told me that I didn't have the right amount of Killer Tcells, that my thyroid seemed fine on regular tests but wasn't REALLY working well enough. He tested the thyroid for t3 and t4, tests that doctors just don't bother to do because they say the total thyroid is the most accurate and all that matters.  He said that even a low normal is abnormal since the 'normal' thyroid range is so wide. He told us about about mytochondrial disfunction,  also that my adrenals were over stressed and that they kind of over reacted. This made complete sense! I am so jumpy. Whenever I am startled or shocked in anyway, my fight or flight kicks in but does not immediately calm down. Even though I get mentally calm, my body goes into panic mode as if  I'm having a small heart attack.  When I have tried to explain this to any 'regular' doctor after this, they again dismiss it or ridicule it saying that there is no test that shows that kind of adrenal function.  That there is no such thing as adrenal fatigue or hyper adrenals. When I ask them how they explain my symptoms they have no answer

I taped our second appointment because it was so much explanation. I should find that tape and listen to it again. He explained very well and for the first time a doctor told me that I had an actual medical condition that could be explained. I mean that he could tell me some of what was malfunctioning in my body to make me this miserable.

He gave me loads of supplements to take as well as shots of human growth hormone to inject into myself. I think that visit cost us something over $2500.
Anyway, to make a long story short, I think he just over did it with all the supplements. I tried them for a few months but it all got to overwhelming for me to remember all the stuff I had to take from  morning to night.

The next visit which was a few months later I didn't feel any different so he added more supplements. I think it was our 3rd visit that he moved to an new updated fancier office and the name changed to Holtorf Medical group. I was chatting in the waiting room with one of his patients who really liked him but had yet to see any results. She had been seeing him for 3 years and jokingly said that she helped pay for his "fancy car and new office."
This kind of disillusioned me. Was I going to be someone coming in for another few years with no results?

The whole trip down to L.A. and staying at a hotel everytime was very costly. Dr. Holtorf told us of his new clinic opening in Northern California.  So my husband and I decided to wait for his new clinic that was an hour away from  our house to open and then continue with a doctor there.  I even made an appt to be one of the first patients there.  My appt was to be in  May of 2008. They called and said that there was a delay in their opening and had to cancel my appt. They said that they would call when they were ready but never did.
Meanwhile, it was 2008 when the economy started to crash. My husbands business went belly flop and by the time Holtorf Medical Clinic opened, I could not afford to go there anymore. So that never happened.

Anyway, over the next few years I visited an immunologist, endocrinologist (who didn't even want to see me, just told me that he couldn't help me over a phone appt...Kaiser....) and a couple of rheumatologist. All of who ridiculed everything I told them about Dr. Holtorf's findings, one even to the point of calling his type a charlatan and looking at me with pity. Saying that there were no such things as proper tests for atp or Killer T cells. That I should watch my money and how we are the poor victims being taken advantage . That if anyone had a cure for fibromyalgia the would not be keeping it to themselves.
I stopped arguing with him. You can't do so with such closed minded people.
I wanted to tell him that he was the one that was brainwashed by the FDA and the drug companies running everything.  But I didn't have the energy and you can't change a persons mind with mere words that he just ridicules.

I think if I could have afforded to continue w/ Dr. Holtorf or one of his associates, it probably would have helped me. It would have helped a heck of a lot more than Kaiser anyway!  Kaiser, the pill pushers.  I would recommend anyone who can afford him to give him a try.

My biggest issue with their practice is that I called and try to get my records from them to show to other doctors what he'd said about me but they said that they would not give those out.Very strange and upsetting.

The biggest problem for us fibro sufferers or  anyone suffering from any chronic problem in this country is that you need a lot of money to find the right doctor. It's trial and error. You will run into a lot of people that have good intentions but can't help you, some who are just scams and many one dimensional doctors who have been trained to disbelieve anything their professors didn't teach, especially anything natural, having to do with nutrition or  anything different from what the drug companies (funding the med schools) want us all to think. Not having insurance in this country can cost you everything you own. Having it only helps with the handful of diseases they can treat with drugs or surgery or if there is an emergency.

I'll be back soon. Thanks for reading. I appreciate any input you may have. Be well. Gentle hugs, Sheri


Lee said...

I do agree and I am in Australia, the whole medical round about is very confusing. I have tried so many things and got disillusioned. Acupuncture helped a little but after 6 months of treatment and no further improvement I gave up that. I just think it is so hard trying to be your own advocate etc when you are not well and also can't even think straight!!
Waiting to hear the rest of your story. glad your back to blogging.

The Wellness Coach said...

Interesting post and story. Thank you for sharing. I would agree with mitochondrial dysfunction, yet I also agree that it is technically not the adrenals, but the hypothalmus that gets out of whack (but the adrenals are affected). Yet, supplements still seem to be the main solution for alternative practitioners, just as mainstream doctors prescribe pills too. The problem can be that so many of us with these conditions don't detox all that well, and both supplements and p.drugs have to be detoxed by the liver. I have had the best results from altering my diet and lifestyle, with some key supplements assisting, of course. He should have given you your records too.

Clarry Kane said...

Hi, where a re you? Would love to hear the rest of your story. Hoping you are okay.