1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Teitelbaum on Low Blood Volume....Teitelbaum

Discussion in 'ME/CFS Doctors' started by Cort, Aug 27, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I really don't know what to think about Teitelbaum. He really seems like he knows what he's doing - he seems very smart and creative - but he always seems to have the answer and that worries me. Does his package work? I don't know but he's just come out with his protocol for low blood volume - which studies show that most of us have. They also show that 'fixing' it with erythropoietin doesn't have that much effect - which indicates it's just one factor; still it is a factor.

    Much of it seems like his standard protocol for ME/CFS.

    The Bottom Line First

    He says there are several key things that you can do to treat the low blood volume and low blood cell levels that will leave you feeling better:

    He ends it saying:

    Give the above treatments 6-12 weeks to see the effect. But by one month, most of you will be feeling a lot better with these treatments. In addition, if you have not already done so, do the free Symptom Analysis Program to tailor an overall treatment protocol to your case. Although you do not need to have your blood tests results, if they are available the program will also analyze the more important tests.

    In addition, I recommend that you see physicians at the Fibromyalgia and Fatigue Centers nationally — they know how to help you recover from your CFS and fibromyalgia.

    Will most of us be feeling a lot better with this treatment after 6 to 12 weeks?
  2. Jody

    Jody Senior Member

    Messages:
    3,995
    Likes:
    498
    Canada
    Cort,

    You have piqued my curiosity.

    Why don't you want to think about Teitelbaum?
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Whoops! Meant to say 'don't know what to think' about Teitelbaum. He's very upbeat - says he has the goods - I just wonder how often it all works out.
  4. Jody

    Jody Senior Member

    Messages:
    3,995
    Likes:
    498
    Canada
    LOL

    Glad I checked on what you meant, then. :D

    I understand the questioning, so many of these guys sound really great, seem so confident ... but it takes more than that to heal someone.

    There's an awful lot of that going around it seems...
  5. InvertedTree

    InvertedTree Senior Member

    Messages:
    157
    Likes:
    5
    I saw this article also.

    I wonder if his treatments work better with people who have milder versions of ME/CFS.

    For those of us with severe ME/CFS his treatments don't seem to put a dent in improvement. At least not for me and several others.

    He has a lot of good information but I agree with you Cort. It makes me wonder if his marketing is targeted towards the milder versions of ME/CFS.
  6. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    I'm with Jody on this one!. He talks a good talk and I even beleive he has as much of an understanding of the disease as most people, BUT not the ones that will take us to the finish line. At the end of all his articles, it will ultimately steer you toward something he has to sell. I'm not saying it will not make you feel better, but cure this disease. I don't think so.
  7. Jody

    Jody Senior Member

    Messages:
    3,995
    Likes:
    498
    Canada
    August,

    Sad to say, this is how it seems.

    I am becoming more convinced as time goes on, that there will be doctors who are a help (some who are a hindrance) along the way, but ultimately for many of us, we're going to have to take our healing into our own hands.

    Just my thoughts.
  8. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    54
    ...

    I suspect (or, maybe, want to suspect) that he has a lot of the pieces right but that there is something missing, something important. I also suspect that he set up the "business" too early.

    I wouldn't be at all surprised if a lot of what he says wasn't right on the money, so to speak :rolleyes:
  9. Andrew

    Andrew Senior Member

    Messages:
    1,960
    Likes:
    1,222
    Los Angeles, USA
    The way Teitelbaum writes you get the feeling like he's the man in the know, he's got the answer, and if there is something out there that works, he knows about it. But then I talk to people who go to his centers, most don't get better. Some get worse. And of the ones that do get better, it's not by much.

    FWIW, I'm seeing a doctor now who received training from Teitelbaum. I didn't know this when I started with him. When I started asking more questions, I found out that my doctor's other CFS patients only have moderate improvement. And they are not as bad off as me to begin. But I'm staying with him because he's open to looking at whatever I bring in regarding CFS, and he's very practical in his approach. So I figure we can go beyond what Teitelbaum has to offer. Besides, I don't know who else I would go to. Despite that fact that Los Angeles is a big place, we don't seem to have any CFS experts here.
  10. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    The thing he and other doctors often leave out...

    ...especially if he's talkling about adrenal exhaustion, is 'pre-emptive' or 'active' resting, and getting to bed "early" and getting at least 9 hours sleep (although I'm sure he mentions that elsewhere, plus how difficult it is for many of us to get decent sleep).

    Cort -- do you have a link to the Klimas study?

    d.
  11. Amelia

    Amelia Guest

    low blood volume - low iron - supplements

    Hi, I'm a pro, I've been at it for some 14 years and been to hell and back a number of times, new at this forum and putting in my ten cents worth re low blood volume - low iron and supplements and my experience of doctors knowledge about our 'discomfort'.

    With regards to Chronic Fatigue which off course is a symptom and not an illness, a tiny little detail which most drs seem to overlook and obviously need educating about. Well with regards to CFS, for one it sucks big time and secondly the management of it can drain whatever tiny resources, energetically and financially any one may have. For that reason I talk about it as little as I can and at the moment manage (with a reasonable amount of success) it as follows.

    Rest as much as possible always, (orthostatic intolerance)
    drink as much filtered water as possible with himalyan rocksalt (brine chockers with minerals 84 of them) this is re blood volume (very low blood pressure) Also as much herbal teas as possible.
    3/day yoghert with 2 large tablespoons of fresh (refrigerated) flaxseedoil (or olive/safflower/cocunut) thoroughly stirred in, (chockers good oil/probiotics) keeps the pancreas happy which can't tolerate oil at the moment but sneak it in this way gets absorbed into the yoghert, IT WORKS! (Dr Budwig)
    three times a day fresh wheatgrass juice (chockers with vitamines)
    Pain management ext rapigel (horse med) eucalypt oil, internally white willow bark
    Antiviral/bact/fungal organic Oregano oil/tea tree oil/garlic powder/
    Immune function especially organic tumeric powder in food.
    Gut apart from lrg quantities of yoghert, organic barley and cinamon powder.
    For low iron I have a daily portion of spinach with my vegs.

    All of the above can be bought on the internet for very reasonable price which most people can afford. For none of these supplements one has to visit a dr or pay some drug company exorbitant amounts, none of it is patented, all is God's good affordable and easily obtained medicine.

    I came to this after hugely going into debt listening to drs, getting sicker and sicker from ill advice and ill advised medical drugs. Stay away from antibiotics, they ruin your pancreas and appendix. I know mine ruptured because of it.
    Stay with the easy and simple and affordable. After you've got lost in the medical world of greed and possibly(?) well meaning but thoroughly uninformed advice. you'll be pleasantly surprised how good God and nature is.

    Remember Eve and the tree and what profession that symbol of a snake wrapped around a stick (tree) is associated with.

    God bless

    Amelia
    SunnyInside likes this.
  12. Mercy

    Mercy

    Messages:
    22
    Likes:
    3
    In his defense, Teitlebaum does not receive any profits from his formulations so that there is no issue of a conflict of interest. On his website he does offer some products but mostly they are ones that are either difficult to find, or of a specific brand such as Integrative Therapeutics, which is only available through a health care provider. If you read his book he also describes all of the dosages of recommended products and emphatically encourages people to purchase whatever brand they wish.

    I have also found his approach to be fully inclusive of any new information and techniques that arise. Does he have all the answers? Of course not, but he does provide a great deal of useful information and advice.
    EnduringAngel likes this.
  13. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    741
    Hypothesis for origin of water loss in CFS

    Hi, all.

    I would like to offer my hypothesis for the origin of the water loss to the urine in CFS, leading to the low blood volume, which in turn contributes to the low cardiac output and the orthostatic intolerance.

    I agree with Dr. Teitelbaum in that the problem traces back to the hypothalamus, which is not producing enough antidiuretic hormone (also called arginine vasopressin). But the more fundamental question is why isn't the hypothalamus putting out enough of this hormone?

    This hormone is part of a class of substances in the body called the secretory proteins. These are proteins that are made inside cells, but are exported from the cells to do jobs outside the cells, in this case, to travel to the kidneys in order to tell them how much water to extract from the blood and excrete into the urine. This particular hormone works backwards; in other words, more of the hormone causes less excretion of water. So if there is not enough of the hormone sent to the kidneys, they dump too much water, and the person becomes hypovolemic (i.e. they have low total blood volume, compared to normal). They also become thirsty, and they tend to keep drinking fluids, but they usually aren't able to catch up with the water loss, and they continue to run somewhat hypovolemic. This contributes to the orthostatic intolerance (together with HPA axis dysfunction and diastolic dysfunction of the heart).

    Among the secretory proteins, some are made with cystine double bonds. These help to maintain the shape of the protein molecules, which is important for their function, since they operate by a "lock and key" mechanism with their receptors, and they have to have the right shape to "fit."

    In order to form the proper cystine double bonds, which are made between two cysteine molecules at different locations in the string of amino acids that makes up the protein, the correct partners have to be joined together. If the wrong partner cysteine molecules are joined together, the protein will have the wrong shape and will not do its job well.

    In order to put the proper partners together, the cell needs to control the process of protein synthesis carefully. First, it strings the appropriate amino acids together in a chain, based on the pattern in the appropriate messenger RNA molecule that gets its pattern from the DNA in the nucleus. Some of these amino acids are cysteine molecules.

    These cysteine molecules have to be restrained from forming partners with each other before the proper time (sounds like teenagers, right? :)-)
    In order to to this, the cells have to control what's called the redox potential, which is sort of the market value of electrons in the cell in energy currency terms. If the redox potential becomes too oxidizing (i.e., electrons less available than they should be), the cysteines will form cystine double bonds prematurely.

    O.K., we finally come to the critical substance--Glutathione! The glutathione in the cell is what controls the redox potential, by the ratio of reduced to oxidized glutathione. This ratio has to be high enough to keep the cysteines from joining together until the proper time. So the cytosol, which is the fluid inside the cell that is not contained in any organelles, is normally kept in a reducing state, and that keeps the cysteines apart so that they can be used to form the amino acid chain. As it is formed, the chain is passed into an organelle called the endoplasmic reticulum. The redox potential is maintained in a more oxidizing state inside this organelle. There are also special proteins called "chaperones" (yes, the analogy continues. That's really what they are called.) The chaperone molecules bring the proper partners together, so that the protein has the right shape, and it is then exported from the cell in a regulated way to do its job, in this case to regulate the water lost to the urine.

    By now you probably know where I'm going. If the reduced form of glutathione becomes depleted, this mechanism does not work right. The result is that the quality control system in the cell detects some of the misshapen proteins and sends them to recycling, so that they don't leave the cell. Others make it out, but they aren't able to do their jobs well, because they are deformed. Note that some good ones are still made, because the glutathione is only partially depleted. That's why the resulting "diabetes insipidus" (D.I.) (not the same as diabetes mellitus, which involves blood sugar and insulin) is usually a "mild" case in CFS. I know it doesn't seem mild, but severe D.I. really is severe. Doctors often don't diagnose these cases of D.I., because they are trained to look for more extreme cases.

    So the fundamental cause of this problem in CFS, in my hypothesis, is glutathione depletion in the hypothalamus. The longterm fix for this is to lift the partial methylation cycle block, which will allow glutathione to come back up automatically. Direct efforts to raise glutathione usually only work temporarily, and one has to keep doing them, in order to hold the glutathione levels up.

    There is specific information in the files section of the cfs_yasko group's website about how to lift this partial block. Cort's website also discusses a lot of the background of this hypothesis.

    Incidentally, this same mechanism explains a lot of other features of CFS, according to my hypothesis. These include the HPA axis dysfunction (from faulty production of ACTH), the low activity of natural killer cells (resulting from low perforin production), low growth hormone, and low oxytocin, among others.

    I hope this is helpful.

    Best regards,

    Rich
    SunnyInside and nanonug like this.
  14. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    glutathione depletion in hypothalamus

    Hi Rich,

    My Spectracell indicates a excellent glutathione level. And your post just made me confused. Is it possible I might not have enough of this antioxidant in H while having such a good intercellular level? I really appreciate if I get some answer to this question.
  15. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    741
    To SaraM re: Spectracell test

    Hi, Sara.

    On the Spectracell test, how was your total antioxidant function? If it was in the normal range, and your glutathione was also in the normal range, the situation involving glutathione in the cells of your hypothalamus is probably O.K.

    On the other hand, if you had normal glutathione function on the Spectracell test, but your total antioxidant function came out low, then my current interpretation of that is that there is a problem with the glutathione peroxidase enzyme. It could be due to low selenium, or it could be due to a genomic polymorphism in the gene that codes for this enzyme.

    If this second case applies to you, then you could have a problem in your hypothalamus cells as well as other types of cells, because glutathione and glutathione peroxidase have to work together to cope with oxidative stress in the cells.

    If you don't mind, here are some questions to try to help sort out how well your hypothalamus is making antidiuretic hormone:

    Do you suffer from POTS or orthostatic hypotension?

    Are you able to stand up for a few minutes without feeling faint or having your heart start pounding?

    Can you take a warm shower standing up without feeling faint?

    About how much water do you drink each day?

    Is your 24-hour urine volume more than about half a gallon? If so, can you estimate how much it is?

    Best regards,

    Rich
  16. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    spectracell test

    Rich,

    Sorry for the late reply. I could not find this thread for some time .Brain fog as usual.My Spectracell antioxidants level was in the normal range.Here are my answers to your other questions:

    1.No
    2. Yes
    3. Yes
    4. around 6-8 cups (sometimes more)
    5. I do not know if it the urine volume is more than a gallon, but I urinate frequently and the volume is usually high.

    I also exfoliate a lot of dead skin every day just by using a loofah. I am not an expert in this area, but I feel there is either extra oxidation going on in my body or the antioxidants don't do the job for some reason, if such things can happen at all.

    Bests,
    Sara
  17. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    741
    Hi, Sara.

    Based on your answers, I would say that you don't have a serious oxidative stress problem, that your hypothalamus likely has enough glutathione, and you are not likely suffering from diabetes insipidus.

    I don't know what's going on with your skin. Are you sure you are exfoliating more than normal? Other than the exfoliation, does your skin appear to be in good condition?

    Rich
  18. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    skin

    Hi, Rich.

    I can clearly say that I am exfoliating 20 times more than what I used to do. The skin of the inner part of my feet has aged dramatically, to the extent that people question me about that.

    Sara

See more popular forum discussions.

Share This Page