Treatment with Dr Holtolf? Or UK treatment options?

Discussion in 'Fibromyalgia Main Forum' started by Atlanta8, Sep 19, 2008.

  1. Atlanta8

    Atlanta8 New Member

    I know there are a couple of threads on this already, but notice they're a year or two old - I need some info on how effective his protocol is. I live in the UK and there don't seem to be many actual treatment options over here, just managing your condition (pacing, CBT, GET etc etc). I found out about the Holtorf clinics a couple of weeks ago and have been considering flying over, as it seems such a new and different treatment - and far ahead of us.

    However since reading your forum Ive discovered he's not quite as popular as I'd thought!

    Can I have your opinions on whether you think it's worth my flying out for it, if there are any better docs around, or if you know of anything in the UK? I've heard of Sarah Myhill in Wales so going to contact her, and possibly a thyroid specialist here too.

    I'm basically looking for the right treatment for me (aren't we all!) and because my CFS was triggered by EBV I'm interested in something like Holtorf's protocol, where they'll try and find all the underlying causes and treat them. I'm not bothered WHERE the doctor is - US or UK - just as long as they're good and stand a chance at helping me!

    As some background on me: I am 22, female and had CFS for over 1 year after coming down with mono/ glandular fever last July. I'm about 30-40%, and have a BIG history of low thyroid in my family (although my TSH is normal so doc doesn't want to investigate that further).

    Any help will be very much appreciated!!

    [This Message was Edited on 09/19/2008]
  2. consuegra

    consuegra New Member

    You should find someone to help you investigate your thyroid.

  3. Atlanta8

    Atlanta8 New Member

    Yep that's the first thing we're going to do! Just need some help on where to go after that...
  4. goofgirl

    goofgirl New Member

    Hi Steph,

    I just went to the Holtorf Medical Group in Torrance, CA which is only about 80 miles from where I live. I have had symptoms of Chronic Fatigue for about two years, and started out with having my Hashimoto's Thyroiditis treated by first my primary care doctor and then an endocrinologist.

    After recurring infections and ongoing fatigue, I found Dr. Holtorf's group. I thought they were great. I saw Dr. Koftan, who was very nice and thoroughly reviewed my 30 page questionnaire I had to fill out as well as my past labs and medical records I brought with me. He did a brief physical examination, relflexes, etc. As well as a couple of tests in house, to measure my thyroid function and iodine levels. He seemed to think my thyroid was still not being treated optimally, but also didn't rule out other possible hormone inbalances or underlying viruses.

    He gave me a lab order to have done, and when I went to the lab the lady drawing my blood said I was only the second person she had ever drawn blood from who needed so many viles (I think it was about 12 total...) So that told me he was very thorough in what he was checking for. I received a B12 shot, which apparently included other supplements. I was also given three supplements to start, "Ribomax M" which is a D-Ribose powder with malic acid and magnesium; "Adrena Repair" which contains some vitamins as well as bovine adrenal concentrate, and some various herbs; and "MitoNT" which is supposed to support mitochondrial function. My next appointment was scheduled in three weeks, which I can do by phone rather than make the trip in. That will be in about a week and a half from now, and I can give you an update as to what that appointment entails.

    Hope that gives you an idea about what kind of treatment you would receive there. It's a really nice office with a great, welcoming staff. They don't take insurance, so you have to pay out of your pocket, but they give you a bill to submit to your insurance company for reimbursement. It was definitely worth it for me, because they were able to give me a diagnosis and give me some hope that they will try to treat the underlying causes of my infections, pain and fatigue.

    You might do well to find a good endocrinologist in the UK first who will test not only your TSH but also your free T4 and free T3 and reverse T3. A "normal" TSH doesn't really give you the whole picture of what's going on with your thyroid. Once you get treatment going on that, if you don't improve, you could go to Holtorf. So far, in my experience, I'd reccomend them.

    Good luck to you. I hope you start feeling better soon! Let me know if you have any questions I didn't answer about my experience there.

  5. Atlanta8

    Atlanta8 New Member

    Thanks for your reply! I have 2 appointments booked with Dr Koftan too, in November! (We may cancel these, but thought it better to get them booked in now; as they don't have a cancellation fee)

    I'm glad he's nice (he looks scary in his picture on the website :p) and so thorough. That has reassured me a lot, but I will be interested to hear your experiences of the second appointment and the meds they suggest. I think that's the main problem with the group - they're far too free with the meds they dish out and any severe side effects we experience are "normal".

    I'm looking into treatment with Dr Gersten too - he sounds like he has a very similar protocol but without the commercial side.

    Do let me know how you get on though! If it's easier for you, my email is bob_and_dave 'at' hotmail . com
  6. Atlanta8

    Atlanta8 New Member

    Wow, I just emailed Dr Gersten about possible treatment with him and 15 mins later - a personal reply! I am impressed! (see below)

    He thinks it will be possible to arrange tests over here, then get them sent to him!! If that is possible that would be great (although a little sad that the trip to LA would no longer be 'essential' - hehe!)

    Only trouble is, every time I go onto his website my computer gets hit with a virus?! I don't really want to go clicking any more links on there - can someone copy and paste his '3 step health map' for me please?


    Dear Stephanie,
    I have worked, over the phone, with people in the UK and Australia.
    I do most of my lab work through Genova Labs in North Carolina, USA
    and, even though I work rarely outside the US, to my memory we've been
    able to have Genova testing done in the UK and then samples are sent back
    to Genova in North Carolina.

    I cannot prescribe anything for someone in another country.
    My success rate is 80% with CFS with a 50% cure rate, meaning that half of that
    80% are cured or very close to it.
    I'm happy to answer any questions. Right now I only have time for a brief letter.
    It is important to read and understand the 3 step Health Map at

    The Map and explanation are at:

    I can recommend medications, and they should not be difficult to obtain in the UK,
    if testing shows that you need it. The 2 kinds of drugs I prescribe the most are anti-fungals
    for systemic candida, which is truly epidemic....and anti-parasitic drugs.

    More later.
    Dr. Gersten
  7. GoWest

    GoWest New Member

    Before you fly to the western US and pay a lot of money I can send you the name of a doctor in the UK who I would fly to the UK to see if I didn't have a good doctor here. Please email me off list and I will send you his name. I don't think it is a good idea to post doctor's names here.

    Paula Carnes
    Las Vegas, NV
  8. getwellgirl

    getwellgirl New Member

    Hi Steph

    I live in the UK and I also have CFS/ME. Because I have practioner status I can order Genova tests but I will charge below recommended prices cos I understand how difficult and expensive it is finding out what is actually wrong with us. You could always pass the results onto a qualified doctor to help you deal with the results though I understand the staff at Genova will always help me with individual test results.

    I am going to order the Comprehensive Stool Analysis for myself this week cos I do think its a good one to start off with.

    You can contact me at if you would like any further info.

    The details of all their tests are at -

  9. Atlanta8

    Atlanta8 New Member

    Thanks for that! I may well take you up on the offer! I'm going to see a nutritionist (and ex nurse who recovered from ME through diet) on 8ths Oct, so I'll talk to her about it and see what I need.

  10. thecatswhiskers

    thecatswhiskers New Member

    ............ are excellent in my experience!
  11. hensue

    hensue New Member

    I have never heard of this that is why i am asking, now is this for fibro or chronic fatique or both. He is and endoconolgist
    just checking
    see if i might need to call what do they give yu and does it help
  12. goofgirl

    goofgirl New Member


    Their website is if you want to check it out. So far I'm feeling a little better. Will probably have more success after they get my blood test back. The doctor I saw was an internal medicine doctor, but they know a lot about thyroid function and treat it to help with CFS. I was diagnosed with CFS and FM, but I have more of the symptoms of CFS. Hope that helps.

  13. tamrin

    tamrin New Member

    I have been going to the Holtorf Med Center since March 2008 (5 months) for Chronic Fatigue, I see one of the (approx) 5 doctors there who follow his protocol(Dr. Holtorf no longer accepting patients) As others have posted, they do not accept insurance and unless you have an excellent PPO your insurance may not reimburse you. The first visit is $395. and $295. for follow up, must have appointment every 2 months, you must have lab work done, can cost between $500. - $1000.(insurance may cover)Labs are done before every appointment, lab test show the doc how the supplements or bio-idetical hormones are working. Hormone Scripts cost around $40-$60 per month I am on 5, supplements $30-$70 per month, they have me on about 8. They also offer IV Therapy the one I had cost $165 per treamtment, vitamin shots AMP (Adenosine Mono-phosphate), NADH coenzyme, Glutathione, Vitamin B-12, approx $40. per shot. So far I don't see much change in my health, but I have committed myself to atleast 12 months. Hopefully this will be the doctor who will help me get my life back. I don't have any more options left.
  14. tamrin

    tamrin New Member

    I get a virus message when I go on his site as well.
  15. annade

    annade New Member


    I have the unique opportunity of having seen by the Holtorf doc (Dr. Whiteman) and Dr. Gersten in person as I live in San Diego, CA. I saw Dr. Whiteman for seven months and he had me on thyroid meds (T3), heparin shots (anticoagulation), Diflucan (yeast issues) and countless supplements. After seven months and two trips to the ER physical symptoms resulting from too much thyroid meds I decided this approach was not working for me. My initial hope after reading all those positive testemonials was that I had found the doctors that wouldhelp me, unfortunately that was not the case for me. Several people have posted their experiences with the Holtorf Group more than half are unfavorable, although several did feel it benefitted them. I certainly don't want to discourage you from seeking their treatment, but be cautious and don't expect miracles.

    As for Dr. Gersten, I have seen him twice and been following his protocol (to the best of my ability) for almost three months. He has me on Nyzoral for systemic yeast and 21 other saupplements (only ten of which I can tolerate right now). I am by no means cured, but have noticed an improvement in the following symptoms: no more brain fog, more attention/concentration and my moods are more stable. Unfortunatley I still have considerable fatigue and he is recommending that I consider doing Ozone Therapy in Tijiuana Mexico. I am not sure I want to do this, but am considering other, less drastic ways of trying to rid my body of the underlying active EBV that is probably a real culprit in my ongoing fatigue. I am considering taking MMS (Miracle Mineral SUpplement). It is one of the supplements that the medical group in Tijiuana uses to irradicate viruses, fungi, etc...

    Good luck in your search. Sure hope you find a reatment protocol that works for you. Keep us posted. I am happy to answer any questions you might have about the treatment I went through and and continuing to go through.

  16. Atlanta8

    Atlanta8 New Member

    I'm sorry to hear Holtorf's protocol didn't really work for you. I think it's hard to compare statistics from message boards, because people who have got a lot better probably don't feel the need to use them anymore. It has made me reconsider though. Do you prefer Gersten to Holtorf? From everyone's comments, it sounds that Holtorf is unnecessarily aggresive a lot of the time, instead of treating a couple of things at a time and seeing how much you improve, and gradually building it up... I've not heard about the ozone treatment - I'll look into that now.

    I think a lot of the [Holtorf/ Gersten] protocols I can get over here. I'm going to see a thyroid specialist soon called Dr Gordon Skinner. In the past he has also worked lots with CFS patients/ viruses and helped develop a Herpes vaccine, so I think he's the guy to ask about the HHV-6/ EBV treatments too.

    I have a big history of hypothyroid in my family, so if that needs treating it'll probably make a big difference!

    As I mentioned in a previous post, I a going to see a nutritionist next month - I'll talk to her about Candida, and whether it's likely I have it. So, I want to get these things sorted out first and then see what's left that I need some help with. I would seriously consider Valtrex if I was +ve for active EBV, and for that I would need a trip to the US.

  17. annade

    annade New Member

    Hi Steph,

    I prefer Dr. Gersten's approach because he first starts off by testing for everything (stool sample, urine, hair analysis, amino acid profile, blood tests) and not just relying on blood samples as was the Holtorf protocol. Dr. G found some things about how my system is working/not working that the Holtorf group would never have found out (eg. I have a protein deficiency, leaky gut syndrome, high levels of Uranium and low levels of cortisol at different times of the day). I feel like these are important pieces to putting together a more comprehensive treatemnt plan. Dr. G has me taking many supplements and only one prescription med which I am happy about although I still feel quite fatigued going into my third month of treatment. By the way, Ozone Therapy is not approved in many countries and even in only a handful of states in the US. Mexico, Canada and a few other countries do these treatments so I am still on the fence about pursuing this treatment right now.

    This is only my opinion, but this is where I am at after seven years of pursing a diagnosis and a treatment plan. Doesn't seem like there is a cure-all yet, but we each have to pursue what seems to best fit our current underlying issues. Glad to hear you have a very open mind and sounds like you are on the right path with the nutritionist and thyroid specialist. At least it is a place to start. Getting an EBV test is also wise since so many of us have active EBV that we are trying to address. By the way I am taking 500mg twice a day of Valtrex which I have been doing for the last three weeks. So far I still feel about the same with a slight increase in fatigue. I will continue this for another month and then re-evaluate.

    Good luck to you and keep us posted.


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