padeyas regarding holtorf and cortisol

Discussion in 'Fibromyalgia Main Forum' started by ScottInCalifornia82, Apr 25, 2008.

  1. ScottInCalifornia82

    ScottInCalifornia82 New Member

    Padeyas, in January you wrote: "i wanted to ask scott in california if he ever started adrenal med via Holtorf medical group? i am a patient of theirs and am on cortisol too. do you take their compounded formula? i tried it, but had NO success, but found some benefit with cortef (natural hydrocortisone).. what physician is treating you at holtorf? i have more questions too, but dont want to write too much considering this post might have fizzled out.. well, i'd LOVE to hear from ANY of Holtorfs past/present patients.."

    Hi I just found your post today. I am on the Holtorf cortisol supplement and it has done just a little to help me out. I’ve heard a few people say that the cortef might work better and I’m definitely going to try that because I exhibit all of the classic signs of adrenal insufficiency.

    Let me also take this opportunity to express some of my opinions on the Holtorf clinic. At the moment I am very upset with them. I was put on testosterone therapy and was not told about the numerous potential side effects. I have experienced at least two of the side effects. One is hair loss which is irreversible (it was coming out anyway, the T just sped things up). The other I will most likely need expensive surgery to correct. I asked my Dr. if there were any potential side effects and she assured me that at my dose there would not be. It turns out the dose I was on was very typical for people with true hypogonadism yet my T level was pretty much normal.

    My other complaint is why do they feel the need to compound all of their own supplements!? I found melatonin supplements online that were 9 times less expensive per dose than what they offered at the clinic. They also compounded their own testosterone. Had they not done so, I may have been made aware of the side effects before it was too late. They seem very financially driven. It’s shady.

    Please ask as many questions as you like. I just came to the realization that we’re pretty much on our own. I don’t trust any doctors anymore when it comes to CFS.

    Scott
  2. brainfoggy

    brainfoggy New Member

    Hey Scott

    I'm sorry you've had bad side effects from the meds they put you on. I'd say quite a few people have complained about their protocol... they are only in the business of making money and I'm done financing their "cause". I just had my last appt with Dr Whiteman at Holtorf and am sicker than ever and more broke than ever. Yes padeyas did mention their compounding cortisol was bad for him and I was taking it but they had me stop. I had a brief remission when I first started their program but now am worse than when I first started. I think I'm toxic from the supps or just the illness progressing, and the memory/concentration is bad. I am pursing other approaches/physicians. There is a doc by the name of Dr. Jeffrey Galpin in Tarzana I made an appt with and Padeyas recommended his current doc Dr. Michael Powell in Sacramento. You should also do as much digging as possible- a good website- beatcfsandfms.org get the books they recommend.
    I realized too after this last appt. that we are on our own unfortunately and it's kinda a relief... it will be MUCH cheaper to fix myself! Best way to figure things out is to listen to other people with similar probs and share ideas/treatments. Good luck!

    Mandy
  3. Nimzovich76

    Nimzovich76 New Member

    Well like you said testosterone will speed up the process of hair loss if you have the genetic predisposition, so I guess you were aware of this beforehand.

    In terms of the : "The other I will most likely need expensive surgery to correct" I think I know what you are talking about and to be honest I'm surprised that at therapeutic doses it happened to you (I'm guessing 200mg/week?), it may be something about your metabolism that causes abnormal aromatization of testosterone, however they could've prevented it at the first signs (tenderness, swelling) by using an estrogen antagonist (i.e Tamoxifen).

    I can only tell you that testosterone has great positive effects in many ways other than the common known effects, i.e neuroprotective

    sorry about the experience, hope you do well


  4. ScottInCalifornia82

    ScottInCalifornia82 New Member

    nimzovich76,

    I was actually on 50-100mg per day of the cream. I looked into it and the standard dosages for the cream are either 25, 50 or 100mg per day. Note that this does not mean 50 mg of testosterone, I think it was only a 10% solution but I might be wrong.

    In terms of the other side effect I think you know what I mean. Fortunately it is not serious yet. I went to a plastic surgeon and he said it's present but it's relatively mild. Fortunately it is fixable with surgery, it's just going to be expensive and a major pain.

    To be honest, I don't think I'm going to get another doctor. I'm very lucky in the sense that this condition hasn't effected me as seriously as it has with others. Luckily I can still work and still do moderate exercise and lead something close to a normal life, even though it is far from ideal.

    There are simply too many conflicting medical opinions and I am in no position to decipher them. Even though I do have a science background, I still don't feel like I have the comprehensive knowledge to make medical decisions on my own. It's one thing if I know exactly what the risks and benefits are of a particular treatment. But if the risks and benefits aren't clearly established then you're pretty much just gambling with your health. I’m not willing to do that.

    I think I’m just going to stick with the treatments that I know benefit me and that are relatively risk free and wait and see how things pan out research wise over the next few years.
  5. ScottInCalifornia82

    ScottInCalifornia82 New Member

    Oh I totally agree that the T had many benefits. I loved being on it, I felt great. I wondered why more people didn't use it. Then I found out the hard way.

    It's all a matter of risks and benefits. While T wasn't worth the risk for me, I'm sure it is well worth it for many others, particularly men with true hypogonadism.

  6. Nimzovich76

    Nimzovich76 New Member

    For example Testim is 1% testosterone, the tube itself is 5g which means that you are actually getting approx 50 mg of test (in this example). It is within the normal therapeutic treatment for transdermal delivery (I would think 100mg/day may be to much for someone that doesn't suffer hypogonadism). I thought you were getting it intramuscular which is more efficient and hence less dosage is required.

    I agree, if you don't need to gamble with your health don't do it.

    I forgot to ask you, when they discontinued the testosterone did they give you anything to account for the rebound of estrogen and stimulate endogenous test production? what was their recommendation after you noticed the side effects?


    [This Message was Edited on 04/26/2008]
  7. padeyas

    padeyas New Member

    hey Scott. sorry to hear about the Testosterone side effects. though i am NOT a BIG fan of Holtorf group, i can say my doctor there prescribed me arimadex (anti aromatase enzyme ) that will prevent any conversion to estrogen. its SAD that your doctor didnt prescribe you anything! that is incompetence!! my doc also frequently checked my estrogen levels. as for hair loss, she actually ASKED me if i wanted proscar as a prophylaxis. because i have a full head of hair, i declined. if i were you i would DEFINITELY call them up and ask or demand them prescribe arimadex, tamoxofen or SOMETHING that will prevent any future estrogen build up. just because you're OFF the cream does NOT mean your safe. thats pretty incompetent of them to overlook these effects! i mean, they prescribe hormones by the second. as for hair loss, i would get a DHT inhibitor (proscar, propecia, dutasteride). in this day and age, though there is NO cure for CFS, there is NO reason why anyone should experience hair loss, or gyno. also, if the test gave you energy, i would DEFINITELY think hard about taking the above meds and get back on it.

    as for the cortisol, i would DEFINITELY try pure hydrocortisone and see if you get a better reaction. it helped me MUCH more then their compounding version. it definitely worth a try!!! it helped me MUCH more then the testosterone or thyroid EVER did.

    so what else did Holtorf do (prescribe, test, etc. ) for you?

    dont give up on CFS doctors. i realive that 95% of them are incompetent and should NOT makes claims that can help, but there are a few good ones out there. to be honest, since my journey to get well that started 3-4 years ago, i have NOT seen the progressin i would LIKE, but i still push.
  8. EricaCFIDS

    EricaCFIDS New Member

    I'd like to jump into this discussion on several topics.

    First, I (and my husband - just for general health, he's fine) have both been patients of Dr. Wightman at Holtorf's for a year now. I personally think it's a money driven place, but is also originally about the importance of healing CFS/FM. I believe Holtorf himself knows a great deal and loves research. I trust that part of him. Going off on the tangent of "hormones and longevity" is where I think he has lost his way a bit.

    I was originally a patient of Dr. Powell's but he wasn't helping me. He didn't know anything about supporting the thyroid in a "thyroid challenged" patient, and I was going down fast on his thyroid protocol. It may work for others who have easier thyroids to address, but from all I have learned about the thyroid, I would NOT recommend him for it. I personally found his theories a little "out there" and his protocol very strange and I just couldn't commit myself to it for very long. I was getting far worse, not better. That was my experience, and I spent lots of appts with both him and Michael and had lengthy discussion with Dr. Powell. My Dad and brother both have PhDs in medicine (anatomy and microbiology) and I also have a great understanding. I tried very hard to connect his reasoning and yet couldn't. That combined with the fact that I got much worse on his protocol forced me to find new help.

    That's when I went to Torrance to see Dr. W. I went from probably 25% under Dr. P's care to about 50-75% under Dr. W's care. My main complaint with Holtorf's office is the outrageous cost!! I am now an established patient and buy most of what I need online and decline on supplements from him. He seems fine with it. My other big problem may be (when I get a definitve answer) that he missed my lyme. He tested me for it through IGENEX and accepted the "negative" result, even though according to Dr. Holtorf's revised criteria for lyme on his website - I have lyme. I am currently seeing an LLMD and doing more definitive testing. I took Doxycycline for about a month and can't believe the improvements from it!! I'm sleeping all night, I got mental clarity from it and motivation and I'm able to do some exercise. It didn't do much for my fatigue, but did alleviate my dizziness and sweating.

    I'm very encouraged. I am still a patient at Holtorf's because I have yet to find a doctor that understand hormone replacement like Dr. W. I have increased libido, lost 40 pounds, better sense of well being, better energy and more. The Hydrocortisone didn't help me at all, even though I know I have adrenal issues. I've never tried the Cortef. I used Isocort a few years back and had good success with it. Many of the treatments Dr. W had me do (heparin injections for hypercoagulation, Valtrex, Cipro for a month, Diflucan, oral nystatin, HRT and immune boosting and ATP supplements and more) were also treatments for lyme. I think that's why I've had so much improvement. Now, if I do indeed have lyme, I plan to go the ABX route and see if I can't go to 80, 90 or more %!!

    I am not familiar with arimadex. Dr. W never prescribed it for my husband either, and he's been on 200mg a day of Test cream for the past year, with no problems. What exactly does it do? Thank you!

    I'm very sorry Scott that you had side efffects from the T. I don't understand it. Perhaps you could see Dr. W for more (and better, in my opinion) information. I'm sure you are DONE after what you've been going through, but he is good with the HRT (again, IMO). That was not Dr. P's strong suit at all.

    I do like the compounded HRT but have found other places to get it. I do get my T3 from Holtorf, but that's it. I'm on a high dose and need a pharmacy that knows what they are doing.

    Well, that's my 2 cents. I thought I'd contribute to the discussion. It's so interesting to me the different experiences we each have with the same doctors and offices.

    All the best,
    Erica


    [This Message was Edited on 05/01/2008]
  9. padeyas

    padeyas New Member

    Erica,

    interesting post, i can say i agree/relate to EVERYTHING that you wrote wrica! first, i am not ANTI holtorf. like you, they have given me MUCH more results/benefits then dr. powell. though they are EXPENSIVE, they do care and are willing to try things. my doctor there was willing to listen and experiment and i LOVED that!!!!!!!

    the reason i switched practioners was, first, money. i just could not afford another year with them. second, as i had already tried many treatments and had spent enough time on my hormones, supplements, etc., i thought it was time to focus on the infectious causes. i knew years ago that chronic infections were my root cause, but Holtorf has steps to their protocol. unfortunately, clearing the infectious cause was towards the bottom. well, after about a year into treatment with them they prescribed me an antibiotic, but the dose (500mg/day of zithro is WAY too high) and other things just gave me a strong impression that theyre not 100% competent with infections. that is why i choose Dr. Powell. he is familiar with many microorgansism/viruses

    youre right about Dr. Powell's experience with hormones (thyroid, test, etc..) i can give you multiple things that he said leading me to think its NOT his forte. but thats ok. i didnt go to him for hormones. ive been on them long enough that i know what i do/dont need. as long as he is willing to listen if any revision is needed is ALL i ask.

    i just think dr. powell, with his background (rheum dr.), his patient demograph (CFS/fibro with infectious cause), and the fact he is also a patient (yes, he has a chronic infection and has tried MANY of the things he prescribes) gives me faith. i also love that he stays up to date on immune function research. i dont look at CAP (continuous antibiotics) or anti virals (both of which he prescribes) as a short term fix. taking either of them (if you have an infection) will TRULY make you feel worse before you better. i'm sorry things didnt work out for you with Dr. Powell and i am not saying dr. powell is a better physician then ANYONE at holtorf. i just think he focuses on a different subset of CFS. i would still be with them, but i couldnt afford $300/month phone consults anymore.

    has Dr. W (@ holtorf) checked your hubby's estrogen levels? if so, they might be low enough that its NOT a concern right now. if not, i would HIGHLY recommend checking them. propecia (inhibits 5-alpha reductase enzyme conversion that converts testosterone to DHT-root cause of hair loss) and arimidex (inhibits aromatase enzyme responsible for test conversion into estrogen) are the TWO biggest side effects of testosterone. actually, thost are the two biggest superficial side effects. the biggest physiological side effect is an increase in PSA (prostate stimulating hormone), but propecia or proscar prevent that. proscar (same as propecia just larger dose) is for enlarged prostate. see, keeping your DHT low will keep your prostate small and prevent hair loss.. isnt life great? you might want to look at your hubby's lab work to see what his PSA levels are too. i'm SURE they tested him for that. most physicians wont prescribe test prior to knowing levels.

    erica, i'd love to ask you a few things via a personal e mail. i just had a few questions in regards to treatment. if you're ok with it, drop me an e mail at padeyas@aol.com

    best wishes,
    Keith
  10. ScottInCalifornia82

    ScottInCalifornia82 New Member

    Dr. Shah gave me indole-3-carbinol, a natural supplement that she guaranteed would solve my problem within 4-12 weeks (Has anyone heard of this??). Well it's been two weeks and I haven't noticed a damn thing. I am afraid to go on arimidex or tomaxifen because they can cause other side effects like impotence and they have not been thoroughly studied in men. I don't want take anymore chances. I don't want anymore uncertainty. I'm just going to go with the surgery which is relatively risk free and call it a day.

    After this incident my trust of Dr. Shah has gone out the window. I simply can't work with a doctor I can't trust so I'm done with them. And I'll say it, I AM anti-Holtorf. I know they have helped people, but I also know they have made people worse. Including the psychological damage caused by my side effects I have to say I am worse off than I was when I started. In my opinion, for anyone thinking of going to Holtorf, you're basically gambling with your health. You may win, you may lose or you may break even (minus the loads money you'll spend of course).

    I am sort of considering the possibility of seeking an LLMD. After all, my health problems started shortly after I contracted and was treated for Lyme. But then again, I don't have the classic symptoms of chronic Lyme such as pain. So who the hell knows.

    The truth is, I've been to over 40 doctor's appointments within the last year and I'm just getting f-ing sick of it. I just want to move on with my life and focus more on symptom management and stress reduction.
  11. EricaCFIDS

    EricaCFIDS New Member

    First, let me say that I'm sorry you are so frustrated and miserable and back where you were. I understand all of that. It's so difficult to deal with and incredibly frustrating.

    Is the Indole-3 Carbinol for estrogen dominance? I had someone up here (who isn't very good with hormones) tell me I should take it and I haven't yet. I'm unsure if I really need it, but I believe that's what it's for.

    It's too bad you didn't see Dr. Wightman in the first place. I think he would have been far more familiar with male hormones and really knows them. I understand that you are DONE with Holtorf's group. I don't blame you.

    As far as the "classic" symtpoms of lyme, I don't have a lot of them either, like pain. I do have the hormone deficiencies, the fatigue, dizziness, cognitive problems, etc. How did you know you contracted lyme? And how did you get treated? Wow, maybe that's an answer for you! A person is never cured of lyme, but remission is very possible. If you know that you once had lyme, then try an LLMD again, that's my opinion. The one I am seeing is in So Cal one week-end a month. He's considered an expert LLMD. Go to the California Lyme Group on Yahoo, lymenet, CALDA or others to get a referral.

    I hope you can solve this for you and that your surgery goes well. An LLMD is a good way to go....That's where I'm at! ( :

    All the best,
    Erica
  12. brainfoggy

    brainfoggy New Member

    Where do you buy the supplements from Hotorf online? I would be willing to just pay for the consult if I knew I could get the supps cheaper and just get thyroid med from them.

    Thanks
  13. ScottInCalifornia82

    ScottInCalifornia82 New Member

    Erica,

    Thanks for your support. Yes, the I3C is supposed to treat the estrogen dominane which has caused some of my problems. There seems to be a lot of legit evidence suggesting that I3C accelerates estrogen metabolism and blocks its effects. Arimidex simply haults the conversion of testosterone to estrogen. I’m very wary about taking arimidex because it’s effects have not been studied in men. I’ve also found anecdotal evidence that it can promote hairloss (not that I think that’s the absolute end of the world, I just don’t want to accelerate it).

    In regards to my Lyme, I was diagnosed and treated for it with six weeks of doxycycline in 1991 when I was nine. My Lyme started with the usual symptoms of flu like illness along with some joint pain and this was accompanied by the usual ignorance of doctors who brushed off my symptoms. Thankfully, I developed a symptom that couldn’t be ignored, I couldn’t move the right side of my face (bell’s palsy). This was not a symptom that could be attributed to depression or being bullied at school. It was taken seriously and I was tested “just in case” for Lyme and sure enough it came back positive. After treatment my bell’s palsy went away and things seemed to return back to normal, at least for a little while.

    However, over the course of the next 13 years I developed cognitive problems, tremors, muscle twitches, poor coordination, severe IBS, sleep problems and persistent fatigue. Three years ago I started experiencing hypoglycemia and dizziness.

    I am planning on moving back to New Jersey fairly soon where I know there is generally an increased awareness about Lyme. Perhaps I should seek out an LLMD there. But then again, I may also just wait it out and let all of the controversy and craziness surrounding Lyme/CFS settle down and these conditions are finally accepted by mainstream medicine.

    I think you seeking out an LLMD is a very wise decision. I wish you the best of luck.
    Scott
  14. blakeusa

    blakeusa New Member

    Quote
    _______________________
    "As far as the "classic" symtpoms of lyme, I don't have a lot of them either, like pain. I do have the hormone deficiencies, the fatigue, dizziness, cognitive problems, etc"
    ________________________

    Lyme can cause all of the above symptoms-- with or without pain. There is no single signaturesymptom of lyme. It is different for most. Or it affects each person in different ways-- but fatigue, dizziness, and cognitive problems-- are VERY CLASSIC presentations of lyme. In fact cognitive problems are my #1 issue. I have a well documented case of Lyme and see a LLMD for about a year now. He says that CF/MS/Fibro is mostly lyme.

    Lyme is a CLINICAL DX and not a yes/no blood test. the tests help support the Dx.

    Lyme is very easy to get-- just about anywhere in the US. The ticks are about the size of this ( . ) and you would never know. Until you got sick and could not get better.

    Also many ticks carry other parasitic infections that are =2 or worse than Lyme. Babesia, bartonola etc. Google Lyme Disease co-infections
  15. EricaCFIDS

    EricaCFIDS New Member

    I haven't signed on here in MONTHS! I was scanning through and saw this old post and your reply. What made you reply to it?

    By the way, I agree with you completely.

    Since writing this, I have recieved a "clinical" diagnosis for lyme and have started treatment. I decided to get my husband and kids tested and unlike me, they all 3 tested "positive" for lyme. We are a lyme family and all getting treated. It's such a blessing to know before they got more serious symptoms.

    Thanks for helping to let people understand more about it. So far, none of us appears to have any of the co-infections.

    All the best,
    Erica
  16. Heyygirl

    Heyygirl New Member

    I have been interested in following your experience at Holtorf's. I have been a patient of Holtorf for a little over a year and tested negative for lymes, but my most recient labs show a new test he did last month which shows the possibility of lymes.....or mold. I have been happy with my treatment there, however, like you, I wish he would reverse some of his steps of the protocol...such as the coagulation defect. If I was laying down soluble fibrin monomer, then all the supplements as well as the thyroid was not getting through the monomer in the veins and capillaries hence, a waste of time and money. Nevertheless, I have been better, still brain fogged bigtime, but when I get my "colds" etc, it doesn't lay me out like it used to. Sorry, I am wandering,,how did you find our you have lymes? What test showed that? I was going to have a phone consult with Holtorf in 2 weeks, as I thought it was simply to titrate thyroid meds up, but now that I research this other lab test he had done, I am going to see him in person.
    Thanks for any info!
    Heyygirl


    12/06/08 UPdate.... well, I saw Holtorf, he upped my t3 to 100mgs. HIs response to my high c4a and c3a levels was, "well your fighting something and we already knew that". That's about it. Kinda disappointing. I sure would like to know what I am fighting to keep the immune system and the inflamation levels in such high gear. Not sure what to do next.
    [This Message was Edited on 11/23/2008]
    [This Message was Edited on 12/07/2008]