Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Feb 24, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. as most of you know, i did 6 months of valcyte, had no improvement, and am now back on it under dr. lerner's care.

    i had an adrenal test from a company called neuroscience with my old doctor which showed many abnormalities. it was a saliva and urine test, where they made me send frozen saliva samples collected 4 times in a day, and urine.

    my doctor at the time told me that my adrenal function is "flat". i have had CFS for 15 years. he told me to take various supplements such as AdreCor. (i saw a copy of the test results and it was indeed abnormal). i took the supplements for a few weeks.

    dr. lerner told me not to take them (he said i am not to take anything not prescribed by him). he did his own test...a corticotropin stimulation test, which came out normal.

    i am now worried as to how my "flat adrenal function" will impact my treatment. why do some doctors measure only cortisol? the test done by the old doctor measured other hormones as well.

    any information would be appreciated.

    thank you

  2. springrose22

    springrose22 New Member

    I also had the saliva cortisol test done, and my adrenal function was also flat. This test just confirmed my suspicions at the time. So I started treating with adrenal glandulars, New Roots Adrenal, to be specific, as well as Vit C, Pantothenic acid, and a few other things as recommended by Dr. Wilson who wrote a book on adrenal insufficiency. And, I have definitely improved. But, I was so sick, I didn't notice an improvement for 3 - 4 months. Not cured, but improved. Once your adrenal function is impaired, it takes patience and some time to improve them, but it can be done. I'm not familiar with AdreCor. Is that adrenal glandulars?

    Those of us with ME/CFS often have many problems, but if adrenal insufficiency is one of them, then that must be treated first, otherwise, other treatments could make you worse or not work at all. Now, I don't know why on earth Dr. Lerner said not to take anything that he didn't prescribe, I guess he wanted to maintain some control which I understand. But, I have to assume that although he is considered a ME/CFS expert, he certainly is as close minded about adrenal insufficiency as most other Drs. are. Which is not a great recommendation in my opinion. I know that if I had followed ANY of my Drs.' advice, I would definitely be worse or dead by now.

    What happened to your old Dr.? Sounds like he was possibly the better choice. Can you go back to him? Take care. Marie
  3. grace54

    grace54 New Member

    and I believe it is imperative to regain health. Dr. Lerner did a diservice with his comments. Any DR. should respect another Dr and should work together. For what you are paying him he could afford to call your previous DR and get his imput to help you. I see an ego problem here.Any good Dr who treats these syndromes looks at the adrenals seriously. I don't see how a person could get better especially in light of what Valcyte and other meds can do to stress /harm our bodies. I really think he made a bad call.
  4. Waynesrhythm

    Waynesrhythm Member

    Hi Sue,

    As someone who has been helped immensely by supplementing with low-dose cortisol (Cortef) for adrenal insufficiency, I see a big question mark regarding Dr. Lerner. He seems to be unaware of the prevelance of adrenal insufficiency in the ME/CFS population and/or is unable to discern that the standard blood tests are highly unreliable and open to a variety of interpetations.

    I have to wonder if he considers himself an expert in ME/CFS, or if he just happens to have a particular interest in doing Valcyte experiments on the ME/CFS population.

    Dr. William Jeffries, a now-retired doctor (M.D.) who pioneered low-dose cortisol therapy for adrenal insufficiency, and who spent an entire career specialing in treating a variety of illnesses that were affected by low cortisol levels, feels there is only one sure way to test our adrenal glands functionality. And that is to do a trial cortisol supplementation.

    He has little confidence in any of the current tests to measure cortisol levels, including the Cortrosyn Stimulation Test or the Adrenal Stress Index test. He says our cortisol levels fluctuate too much to get an accurate snapshot of the true status of adrenal function.

    He instead relies primarily on a patient’s response to a trial supplementation. He starts out at 20 mg/day for about 1-2 weeks. If no improvement is noticed, he increases it to 30 mg/day. If there is still no improvement in symptoms, he usually determines that adrenal insufficiency is not the problem, and takes another 2-4 weeks to gradually withdraw the supplementation. In other words, if you don’t need it, your body won’t respond to it.

    Best to you as you try to figure out how to address this.

    Regards, Wayne
    [This Message was Edited on 02/24/2008]
  5. ladybugmandy

    ladybugmandy Member

    thank you everyone.

    i would like to think that its a signaling issue...but i feel like i would like to try cortef.

    however, i will not.

    dr. lerner does seem very rigid and i do feel guinea piggish...but my old doctor had only one patient on valcyte: me. dr. lerner has hundreds...he has helped hundreds....

    i am really sick and, to put it bluntly, am at his mercy.

    thanks again:)
  6. romalaw

    romalaw Member

    Hi Sue, I take prednisilone which is a cortisteroid like cortef. It has improved my functioning more than anything I've taken. Dr. Lerner does not want his patients on steriods. He said steroids suppress the immune system and work against the valcyte. He wanted me off of them but kind of backed off when I told him it helps control my asthma too.

    I don't know why he doesn't want you on adrenal supplements except that he really doesn't seem to want his patients on any supplements. I don't believe this is because he is concerned about interactions as much as it is because he wants to keep his research "pure" and eliminate as many other variables as possible. This makes it hard on his patients who depend on them to help function.

    I have followed your posts and I know you really researched Lerner and had a gut feeling about seeking his treatment. I think it's really important for you to follow Lerner's protocol and give it a real chance to see if it works for you. Otherwise you'll always wonder. You have already invested a lot of time and money in it. If it works, wonderful. If not you, you are still very young and can always try the adrenal support and other treatment options later.
  7. ladybugmandy

    ladybugmandy Member

    thank you. i do believe dr. lerner does not want to deal with other variables and thus frowns on supplements.

    the core of his beliefs about the illness are the same as mine (except i am sure that CFS is primarily a brain and CNS infection) so i will follow his directions.

    i don't feel young..i feel 98! lol

    dr lerner says this will be "a lot of work" but there is "more than hope." hope is all i have and he does help me with that...and that keeps me going from day to day.

    all the best,

  8. meganp

    meganp New Member

    I noticed this thread on adrenals and thought I would post my experience.

    I have had CFS for 5 years following epstien barr and my adrenal tests (saliva) show my DHEA is well below the normal range.

    At the urging of my doctors I have twice tried DHEA supplementation and both times I felt that it made me worse. I have subsequently stopped taking it. I know that many people claim success with it but that is not my experience so I do not think it is clear cut.

    It is interesting to hear Dr. Lerners comment about suppressing the immune system. One of my doctors has since said that Trevor Marshall has also claimed the same thing (not that I want to open a debate about him).

    I don't know if adrenal supplements help or makes the immune system worse but my sense is that the medical community have no agreement about what some of these hormones do. From what I can tell there is likely a significant interaction between the endocrine and immune systems which is very poorly understood. For this reason I think we need to be careful about 'normalising' some of these things, perhaps our bodies are altering these hormone levels for a reason?

  9. ladybugmandy

    ladybugmandy Member

    hi kelly. i couldnt read ur entire post...i have immunocal but i cant stand to take it...the makes me gag. i just cant do it. but its supposed to help antivirals work better.

  10. ulala

    ulala New Member

    tried numerous things, i.e. cortef, cortisol, Vit. C., Isocort and many other supplements. i recently started taking low doses of iodine. I have been feeling a lot better. I actually almost feel like I'm on speed. I'm talking a lot more and talking really fast. Yahoo groupus has a lot on iodine supplementation. Also you can read a website called

    I can understand why Dr. Lerner doesn't want you to take cortef. If you get an improvement you won't know if it's the Valcyte or the cortef that's bringing about the improvement.

    I've read that the adrenals should be treated before the thyroid, but I've also read that once the thyroid is working properly then the adrenals should follow. So far for me the iodine seems to be having a good effect on me.

    I've posted a question and answer below. The answer has a little about iodine. Best wishes!

    Dr. David Derry Answers Reader Questions
    Brought to you by Mary Shomon, Your Thyroid Guide
    Index of Q&As with Dr. David Derry


    Topic: Low Adrenal Function and Thyroid Problems

    A Reader Writes:

    I have seen many Doctors and am confused as to why I am not feeling better. I was diagnosed as having low adrenals for which I was prescribed Cortef and that gave me heartburn and general aches and pains. I then took a natural adrenal complex formula for one month without much notice of improvement. I also have been diagnosed with thyroid antibodies which came back positive >60 and then just recently came back negative??? I have all the signs of hypothyroidism (average daily temp 94.6, hair loss, low libido, depression, severe constipation, fatigue) and have been prescribed Armour thyroid starting with 30mgs x2 a day then will be increased to 120mg. I have so many symptoms that I won't go into depth about, but also have a hormonal imbalance, allergies, candida for which I take Diflucan and have been diagnosed with chronic fatigue which I am hoping is just hypothyroidism. I am trying to tackle one problem at a time, however due to multiple diagnoses here, I am confused. I have a question about treating hypothyroidism if one also has an adrenal problem...I understand that if one does not take care of the adrenal problem first, that taking medications for thyroid might not be advisable. Since my ob-gyn doesn't know much about adrenals, she prescribed Armour thyroid and has chosen to try this first. I am taking Armour thyroid now (just for one week 30mgs 2x per day, which will be increased to 120mgs)and I seem to be more depressed--I wondered if there could be any correlation between the medication and my moods? Could this possibly not be effective due to my adrenal problem and if so, why and what can I do?

    David Derry Responds:

    Dear Patient

    From your description and temperature, clinically you are low thyroid and dead in the water. As the thyroid controls adrenal function it might be the reason your adrenals are not functioning normally. (1) Under normal circumstances, as the thyroid is corrected the adrenal function correspondingly rises at the same time. If you truly have low adrenal function and therefore the adrenals cannot respond correctly as the thyroid is given, then problems arise from this lack of adrenal hormones. Adrenal failure however, is quite uncommon.

    From the experiences of patients I can guess you will have difficulty obtaining thyroid hormone in adequate doses to make you feel better. This is because the TSH test is quite sensitive. When the TSH was introduced in 1975 for diagnosis and treatment monitoring of thyroid diseases, it was a decision made by consensus of endocrinologists. No studies were done then or since to compare the TSH approach (Laboratory) to the clinical approach used for 83 years before that.

    Unfortunately the TSH test approach to diagnosis and treatment lowered the dose used to treat patients considerably. The effective dose physicians used by clinical judgment and experience before 1975 was around 2-3 times higher than the dose used by TSH blood test monitoring. So everyone's dose of thyroid after 1975 was decreased by about two thirds of well established clinically effective doses. It is my personal view that the change in 1975 from clinical assessment of the patient to laboratory testing for thyroid diseases was a mistake. But perhaps this is because I was trained in the 1960s to do clinical assessment for thyroid diseases. However there is no doubt whatsoever that the higher doses are better for the patients and there are no side effects what so ever (short or long term) when these higher doses are used. (Toft) Patients get their lives back and carry on with the need for constant physician monitoring. Once a good effective dose of thyroid hormone is established which makes the patient feel good, cope well and get on with their life, medicine had accomplished what I call a cure. The patient has much reduced need for a physician.

    Physicians before 1975 found the minimum clinically effective dose for hypothyroid patients was about 180 mg of desiccated thyroid or 180 micrograms of eltroxine (T4). (2) Physicians of the 1960s had great difficulty detecting any effects clinically or by laboratory tests, for patients on doses lower than 180 mg. Therefore your dose of 60 or 120 mg is not likely to work. At the same time that dose of thyroid will likely turn your thyroid off. This means you will only feel the benefits of the 60 mg of thyroid you are taking. But if your thyroid gland beforehand was putting out 100 mg of thyroid then you have just lowered your thyroid levels. This could account for feeling worse when you started on the medication. Likely a desiccated thyroid dose around 180-300 mg will solve your problems.

    Part and parcel of the thyroid system is your dietary iodine intake. If it is not adequate there are many iodine functions in the body for which you need to make sure you have enough in your diet. (3) The prime function of iodine is to make thyroid hormone in the thyroid gland. Therefore if you don't have enough iodine in your diet you will tend to become hypothyroid and or develop swelling of your thyroid (goiter). But there is evidence now that iodine has important other functions throughout the body including the getting rid of abnormal cells which are pre-cancerous. (3) Whether a low iodine intake is contributing to your problem is unclear but it is smart to make sure you do get iodine in some form. The commonest form is in table salt. If you do not eat salt then you will most surely have an inadequate iodine intake. This phenomenon is being seen often in adults and children now.

    Although it appears that you have multiple problems, really, they could all be due to low thyroid. The problem of your adrenals may need to be addressed if you are unsuccessful with thyroid. If your physician watches you carefully then any problems can be avoided.

    I hope this helps you sort out these problems.

    Dr. David Derry


    [This Message was Edited on 07/17/2008]