Today I went for my blood test. I had 9 vial of blood taken. I'm kinda chuffed abt that. Last month, there were 13 vials taken. Maybe that means they're honing in on something?
I've tried various kinds of medicines over the years - anti-depressants, anti-migraine pills, anti-epilepsy pills. I've tried
allopathy, homeopathy, ayurveda, acupuncture, herbal supplements, vitamins, minerals you name it. And I know that this is the case with almost all CFS patients.
But last month I tried something new. I went to the Holtorf Medical Group, which specialises in fatigue syndromes. The founder Dr. Kent Holtorf suffered from CFS himself. He has now opened a center for "natural, 
prescription Bioidentical Hormone Replacement, Complex Endocrine Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Infectious Diseases, Fatigue Syndromes and Neurological Illnesses".
prescription Bioidentical Hormone Replacement, Complex Endocrine Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Infectious Diseases, Fatigue Syndromes and Neurological Illnesses".It's just been over a month since I started treatment at the Holtorf center and over the years I have learnt not to get too excited about a possible treatment for my CFS, but I have to admit, I am "cautiously optimistic" about this.
Some of the reasons for my optimism are as follows:
I have been tested for hypo-thyroidism time and time again, but I was only tested for T4, and never for reverse T3. Holtorf prescribed a number of tests for me, which, in 7 years, had not been tested by any of the doctors (endocronologists, neurologists, GPs, gastroentologists) that I had visited. And some of these tests, including the reverse T3, are positive.
I know it sounds kind of whacky, but any CFS patient will understand why I whooped for joy on learning that some of the test results were positive. This was the first time I had physical proof that something was actually wrong with me! It wasn't "all in my mind"!
I don't think that the mild hypothyroidism or the other deficiencies they found are responsible
for my CFS in it's entirety. However, I do believe that curing these will help my overall health and energy levels.Till now, I couldn'y fight my illness because I didn't know what to fight. All the causes seemed invisible. But now that I have somthing to focus on, well, just let me at it!
P.S - In case youre wondering, I got all the tests and medicines given to me by Holtorf, double-checked by my GP as well as another doctor. Both doctors agreed that the diagnosis and treatment seemed correct & logical.
Update - sorry for the long delay in writing this update, but you know how it is when you have CFS - nothing is ever done on time :)
So, to answer some questions below:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone below put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. What has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt Holtorf, you can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html
All the best!
So, to answer some questions below:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone below put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. What has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt Holtorf, you can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html
All the best!
Hi,
ReplyDeleteWe have been trying to find someone to talk with regarding their treatments at the Holtorf Clinic (Torrance). My son has tried "everything that conventional medicine" has to offer regarding his CSS (Central Sensitivity Syndrom)and FM. Which, by the way are terms that many of his neumerous Dr's have mentioned-BUT has still never Dx'd him with.
It looks like you have been using their protocal for about 6 weeks? Have you seen any improvement?
Please advise us of your progress.
Sorry to bother you again I am sure you are busy after your big trip.
ReplyDeleteWe are deperate to hear from you regarding your health condition since your visit to the Holtorf Clinic.
1. Has it helped at all?
2. Which Dr.did you see?
3. Was it a scam? $$$?
4. Is there really any hope out there?
All we have to go on is the Testimonials on the Holtorf web page and they are all positive-hand picked?
Please respond if at all possible we would appreciate any information you could provide.
"The Momma"
Hello,
ReplyDeleteWhere is this Holterf medical clinic? I am really interested in the same questions that the previous person posted in comments here. Did they help you much? Thanks for your time in advance.
Bluebirdy
Hello,
ReplyDeleteI am also curious about these same questions concerning the Holtorf Medical Group. Have they been answered somewhere else on your site? or did Holtorf Medical Group pay you to post this (another positive testimonial)? Any further info would be greatly appreciated!
I was a patient of the Foster City Holtorf Medical Group. My issues are adrenal fatigue, low thryroid and candida. I looked carefully into their treatment and decided to give it a try (last October till about 2 months ago). It is good to hear that many people have been helped by their 'system' (yes, it does seem like a system and that most people will get similar treatment) but it hasn't helped me. The doctor there overcorrected my thyroid so that I had heart arrhythmia, unexplained anxiety, and my hair loss and thinning got worse. My family doctor and another doctor I saw recently were amazed by how much thryroid medication I was given (50 mcg T3 and the Holtorf doctor actually wanted to take 75 mcg). When I told him about my symptoms with the thyroid medication he said he could give me another medication for arrhythmia! The last thing I wanted was another medication. I also disagreed with their philosophy of trying to get all hormone levels up to what they were in a 20 year old. I am almost 60 and it doesn't make sense to me to have the hormone levels of a 20 year old. The DHEA I was given made my skin break out as well.
ReplyDeleteHowever, some of the medication was helpful -- the bioidentical estrogen and progesterone and the D Ribose have made a difference in my depression. Fatigue, brain fog, and other cognitive difficulties remain.
i too was given excessive thyroid medication by this group, and my hair is falling out. Can you tell me if yours grew back after you discontinued the medication?
DeleteHi everyone, I just wanted to share my thoughts and story after reading this story and comments. I am 46 years old and have faced a variety of health problems. For most of my adult life, my problems with hypothyroidism remained undiagnosed. I had nausea, headaches, constipations, hot flashes, and muscle cramps. I have been to countless physicians and clinics with no relief in sight. To sya the least, my life was a t point where it needed some drastic changes. I found out about Holtorf clinic from a friend of my wife, who had previously been a patient at Holtorf. She was diagnosed with Fatigue and Fibromyalgia and had received a hormone therapy from Holtorf medical. So, I did some research on Holtorf Medical, talk to some people and they seem legit enough so I decided to give them a try. Here I am now, it has been a little more than a year and the changes I have seen of my symptoms has been amazing.
ReplyDeleteAt the beginning the treatments weren't working as intended and symptoms persist but with my family and friends supporting and with the devoted staff from Holtorf, who I can't stress enough about their willingess and dedication (did not give up on me like other physicians) to help a lost cause like myself, I have overcome my illnesses and am proud to say I took the road to recovery at Holtorf medical. My road to recovery is never 100% guarantee AND it is tough but if you have the willpower to fight, and with the right people supporting, anything is possible.
Were you on T3 therapy only at 50mcg or were you also on T4
ReplyDeleteWas it a timed release or normal straight T3
Did you take it in one dose
I am trying to find our more anbout T3 therapy as I can not Take T4 replacement
We didn't go to Holtorf for FM, but because my daughter was diagnosed with Graves (hyperthyroid). Our first endo referral from our GP didn't even talk to us. He walked into the exam room with his head down looking at the lab results and said, "You have Graves. I'm prescribing this medication." The problem was, I didn't understand why she had most of the symptoms for HYPO thyroid - note HYPER. Found Holtorf. It took months for us to get the right combo for her, but she's great now. I'm happy we didn't go the traditional route. And yes, they don't accept insurance so it is difficult, but her health is worth is.
ReplyDeleteI am also a patient of the Holtorf Clinic in Foster City CA. About a year prior I had a "small" stroke deep in the white matter. It affected my left side with weakness and stamina problems. It also affected my speech and swallowing. My neurologist sent me to therapy and said some of my symptoms could get better but not all the way. After months of therapy, I still could not walk more than 20 yards with a cane, before my leg gave out. One year after the stroke and a year of therapy I had very little improvement. The neurologist said to expect that this was how I would be from now on. I refused to believe that if the brain can reroute a little, why did it just stop? It's not like there wasn't enough viable neurons to take the task all the way. I decided to do my own research on the reasons the brain would only go so far and none farther. I soon realized that there were direct relationships of testosterone levels and it's effect on brain function http://en.wikipedia.org/wiki/Testosterone . This article http://www.nytimes.com/1985/07/30/science/new-evidence-points-to-growth-of-the-brain-even-late-in-life.html?&pagewanted=all made me think I was on the right path. Then I read about TBI and treatment for improvement "# The endocrine workup for AH includes serum hormonal assays, such as cortisol (0900), testosterone, triiodothyronine (T3), thyroxine (T4), thyrotropin, follicle-stimulating hormone (FSH), luteinizing hormone (LH), and estrogen (females). Insulinlike growth factor-I (IGF-I) is a screening assay for growth hormone (GH) deficiency. Advanced provocative GH testing may be necessary to confirm this diagnosis. Also perform a complete blood cell (CBC) count and serum electrolyte evaluation.
ReplyDelete# Treatment involves multiple hormonal replacement therapy, as well as monitoring of the patient's serum levels and clinical response. The patient usually responds with improved vital signs, improved constitutional symptoms, and increased endurance for participation and progress in the rehabilitation program. The hormonal replacement therapy usually is required long-term" From this article http://emedicine.medscape.com/article/326123-overview . None of my doctors felt that hormone replacement would help and refused to prescribe. Long story short, after a year on Bioidenticle Testosterone, from the Holtorf Medical Group and I can walk at least one mile without a cane or chair. I also feel better emotionally, mentally, and physically. If anyone wants to see my medical records pertaining to this, I would be happy to show them.
The cost of their supplements are ridiculous! They will go over your blood work over the phone for $295, and then recommend, it seems at the minimum $600-$800 in supplements. Plus htey will recommend you use their compounding pharmacy on site. of course, they don't accept insurance. The thing is, it works. Holtorf is making beaucoup bucks though. Each patient a minimum of $1000 a visit! i'm grateful my thyroid was diagnosed with a reverse T3 test but now I'll switch to a doctor that accepts insurance and have him run the same blood tests. Financially, this place is just too expensive.
ReplyDeleteDrs. in this practice are far better informed about latest national/international medical and hormone treatment protocols verified in respected professional medical journals. Doctors, be they Family Practitioners, OB/GYN, Endocrinologists, etc. are generally 17 years behind current medical research and thus tend to cast doubt on treatments different from those learned in medical school. Holtorf Clinic's correcting and renewing your body's cellular chemistry takes time and it works. I feel 100 % better and have a life again! Most of their recommended supplements I buy online at VitaCost.com (reliable supplements/super prices/free shipping)
ReplyDeleteUpdate - sorry for the long delay in writing this update, but you know how it is when you have CFS - nothing is ever done on time :)
ReplyDeleteSo, to answer some questions above:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone above put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. what has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt holtorf, yu can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html
All the best!
I was diagnosed with Fibromyalgia January 2010. With it comes chronic fatigue. I found an M.D., Dr. Paul St. Amand, who treats only Fibromyalgia -- with guaifenesin. He claims a 90% success rate in reversing the symptoms if one follows his protocol correctly, but it's not easy. If the fatigue is not going away, perhaps you have undiagnosed Fibromyalgia. According to Dr. St. Amand, it's hereditary, and one has it since birth. Sometimes the symptoms don't show up until later. For more info, visit www.fibromyalgiatreatment.com, and read his book.
ReplyDeleteRegarding Holtorf Med Group, I'm seeing Dr. Laufer. He changed my thyroid, and now the heart palpitations are pretty much gone. He also found an active Epstein Barr infection, and prescribed an anti-viral med. I'm starting to feel better, but it's taken a bit over six months. There's a video on the Holtorf website that claims around 90% symptom improvement in around 90% of patients after 12 visits, (if I remember correctly). That's about two years. So hang in there. Everyone is unique and heals at a different rate.
I have been seeing Dr. Moses Laufer for apx 5 years now. He is the most compassionate doctor I have ever seen!! When I started seeing him I was in terrible shape. I have fibromyalgia, CFS and other issues. I started with IV therapy for a few months every week..Yes it is expensive and my insurance hardly paid anything. But it was sooo worth it.
ReplyDeleteThe first visit he tested me extensively which regular doctors don't do. Like someone said above, they are "antique" doctors and behind which Holtorf doctors are up to date.
I had seen an endocrinologist who said my thyroid was fine. Dr. Laufer found that I have an underactive thyroid. He got me on a regime of bioidentical hormones, testerone, thyroid, progesterone and I can say that not my flareups are nothing like they were then. I would be in bed for 5 solid days with a flareup..Now I can function through the flareups (get up and actually do some stuff). Yeah at first they want you to get on the supplements which are great but costly and insurance doesn't pay for them, but you dont have to take them.
I have recently moved out of state so the drive to see Dr. Laufer will be a long one and I'm looking for a similar doctor where I reside and think I might have found one, and I hope they will have at least half the compassion as Dr. Laufer.
What I'm saying is yes!! give it a try!!! You'll be amazed!!!
Amazing results, they found my daughter had leptin issues. She lost all her weight, brain fog gone and she is doing amazing. You cant just go for 6 mo, it takes a little more than that, and yes, I am going too. My hormones were way out of wac. I do agree with having the hormones of a 20 yr old. The environment is sucking our hormones out of our bodies, so we should have them. You don't HAVE to buy the supplements, but they are fantastic and they are not pharmaceuticals, which are horrible for you. I should know, my husband works for a pharm company. Take my advice, this group gets you back to health the correct way, testing that no other doctor does, which is the correct testing!! Expensive , yes, worth my daughters suffering heath after five years of even yales head endo checking her out, WAY WORTH IT. once your established, its once a year, and you can bill your insurance. People with out of network get coverage. Lifesaver. They found I would have had diabetes in about three years, because of high sugar, from a three hour glucose test, they are preventative, unlike current docs, who benefit from pharmaceuticals. I would tell anyone to do it. How much is your life worth to you??
ReplyDelete