Just diagnosed with CFS and epstein Barr please Help Me

Discussion in 'Fibromyalgia Main Forum' started by deepcanyon1, Feb 14, 2009.

  1. deepcanyon1

    deepcanyon1 New Member

    I have been sick and tired of being sick and tired since I was 22 I turned 50 in january. I was told all those yrs ago its was anxiety and was put on xanax for it after being on it for 8 yrs they told me they needed to chance my meds cause it was a bad drug so after almost 2 yrs they put my on Klonopin which I have been on ever since. I never got any better and just got though the days tired and wondering what disease I had that made me so tired and sick all the time.I always had thoughts that i was dying and was so afraid to do anything with the panic attacks. After all those yrs. I have went to a new primary and he did alot of blood test and kept ruling things out till he got back a result of a high Immuglobulinm of 230. He sent me out to a hemotologist to rule out things like bone marrow cancer cause I had had a really bad pain in my leg and at times in my arm that they could find no reason for. After she ruled out any cancers and did some other blood work it showed up that I had epstein barr and was told I also had CFS. She told me that it was out of her knowledge to treat me and sent me out to an infectious disease doctor. I went to her last week with my dear hubby and she took one look at me and told me to get over it that 90 something percent of the country is tired and i just needed to get into physical theraphy and build my strength back up from not doing very much for alot of yrs and that I would be fine and to stop being depressed about what is wrong with me that CFS doesn't kill anyone and neither does epstein barr. I sat there horrified and didn't know what to say. She said I needed no meds and she didn't need to see me again. We left her office I was shocked and hurt all at the same time i knew i was sick and i knew my hubby thought all i need to do was go to theraphy and i would be fine.

    I had all but given up when I found this site. It has given me hope that there is a doctor here in florida somewhere and counselors and support groups so I can get some help and understand this chronic disease that i have. I have done alot of researching on google but have all but came up empty handed. They just talk in a circle and say there is no cure,

    I don't know what to do or where to turn. Any help would be so much appreciated. I have alot of symptoms...I am always tired especially if i do much of anything and by the time its time to cook dinner i don't want to even think about it. And try my best to get it done. I homeschool my 17 and 12 yr old. And I feel guilty when I ask my daughter to cook dinner. I feel like I am taking away her teenage yrs when she has things i know she wants to be doing. I feel like I am not a good mom sometimes because i have them do things for me sometimes like sweep the floors and mop them. But we have a big 4 br 2 bath house with a den and I just don't have the energy anymore to do it.
    I also have blurred vision alot and dizziness but am beginning to wonder if that is what brain fog feels like cause its a strange feeling in my head an i cant think sometimes or will forget what i am talking about in the middle of talking. I also have low blood pressure and i am cold most of the time even in florida in the summer if a breeze is blowing at the beach.
    I sometimes think my hubby thinks i am just lazy but he is the best an trying to understand what is wrong with me and he helps out around the house when he can but then i feel so bad cause i feel like it is my job. He works and lots of times comes home and cooks or does some cleaning here. I draw disability its not much but it helps i got that back in 2001 the diagnosis was anxiety disorder with angorophobias and PTSD. I have alot of stress in my life and everyone says i worry to much about things that haven't even happened as yet. But i am the one that has to take care of everyone else. We moved my elderly parents in with us almost 5 yrs ago they are 87 and its hard sometimes when I cant do for them things i want to cause i am to tired. But they are still able to get around and my dad still drives. But I feel as tho I am missing out on so much life like the bike rides our son and my husband take around the neighborhood. And taking the kids to the beach or on a picnic. They have never seen me healthy so they know me no other way an somedays i just lay in bed and cry because i want to go parasailing, jetskiing, dancing an so many other things with the family I sure hope someone on here can help me know where to start and what to do cause i feel like a lost soul.

    I feel that my husband deserves more and better than me. He is younger than me 35 and we have been married almost 13 yrs and he says if i haven't left you by now what makes you think i am gonna now that we know what is wrong with you but he doesn't understand it at all. And i know its very frustrating for him.
    I have read so many threads on here an i dont understand alot of it but i know i am getting worse cause I have alot of pains from the one in my leg to my shoulders back neck ect. and there are some days when i don't hurt at all then a day comes when it comes back and lasts for days or weeks.
    And could someone describe to me what brain fog feels like please?
    I feel like I am rambling on and sorry if i am i just have so many questions and no answers.
    I know I am leaving so much out about what is going on with me but me like so many others would have to write a book to tell it all.
    Thanks for listening
  2. 3gs

    3gs New Member

    Hi Pam and welcome to the board. You will find lots of info here and support.

    Sorry you had to meet one of "those types" of doctors. CFS EBV are real and this doctor is a RICHARD(fav term for bozo).Have you ever been diagnosed with Fibro? Lyme?

    There is no cure but lots of advise on supplements(Grapeseed Extract vit d protein)most folks take some kind of pain meds and some are going with antibiotics. It really does get mind boggling. Everyone is different and responds differently to meds so its trial and error. Read some of the posts. By the way Xanax and Klonopin are both benzodipines.

    There are views on excerise from what I understand don't do it. I have become house and bed bound from not paying attention to what my body was telling me. You push-you pay.Stress is the WORST thing you can be under.

    You pretty much described the symptoms of brain-fog.It's like having dementia. Aniexty all that you have said in your post are classic symptoms of this roller-coaster disease.

    There are some great letters posted how to explain this disease I personally like The Thief Of Lives. These are good to help explain to family and friends.

    Please do not feel bad about what you can't do. Your hubby sounds awesome. You didn't ask for this dd and can only do so much. Also it won't hurt kids to help.

    Read lots and rest lots LOL my reply turned into a book
    brainfog moment I have Fibro CFS EBV the list goes on.childhood to 57 in varing degrees.[This Message was Edited on 02/14/2009]
  3. ladybugmandy

    ladybugmandy Member

    pam......please take my advice and see a doctor who specializes in CFS/epstein barr. there are a few options but i do not think there is anything in florida (i don't think there is any point in seeing dr. klimas).

    if i were you, i would make 2 trips to beverly hills, michigan to see dr. a. martin lerner ASAP. he specializes in what you have and takes medicare and bluecross.

    he will take blood, order an ECHO and Holter, and give you a treatment plan.

    the problem is, you will have to find a local doctor who is willing prescribe the antivirals you will need. if you cannot do this, there are some doctors who are willing to follow you by phone, although this will cost you.

    i do not know your financial situation but if you are OK in that regard, you can also try the nearest FFC clinic.

    if you need help or info please email me: suebackagain123@yahoo.ca

    i have what you have and have been sick for 17 yrs. i am finally getting help.

    you're not sunk yet!

  4. richvank

    richvank New Member

    Hi, Pam.

    Here's something I posted on July 18, 2007 about a new treatment for CFS. In the meantime, we have done a clinical study of this treatment, and the results are very positive. We plan to report them next month at the 9th international conference of the International Association for CFS and Myalgic Encephalomyelitis in Reno, Nevada.


    July 18, 2007

    Simplified Treatment Approach Based on the Glutathione Depletion-Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS)

    Rich Van Konynenburg, Ph.D.

    I first want to note that I am a researcher, not a clinician, and that what I have to say here should not be interpreted as medical advice.

    In January, 2007, in an effort to shed light on the validity of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS), and to help clinicians to develop a practical treatment based on this Hypothesis, I suggested a simplified treatment approach. This approach is designed to lift the hypothesized methylation cycle block and to restore glutathione levels to normal. It was derived from a complete treatment program developed by Dr. Amy Yasko, N.D., Ph.D., for autism and other disorders that are also thought to involve methylation cycle block and glutathione depletion.

    A fairly large number of people with chronic fatigue syndrome (PWCs) have since voluntarily chosen to try this treatment approach, many with the help of their physicians. It now appears to be working well for many of these PWCs, but some serious adverse effects have also been reported in a few cases. Controlled testing of this treatment approach has not yet been done, but early results from these volunteers suggest that this would not only be worthwhile in view of indications of the efficacy of this approach, but also necessary to ensure its safe application.

    I would like to describe the history of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Hypothesis and the simplified treatment approach that is based upon it, and point out what I think the early treatment results mean with regard to this Hypothesis. But before I do so, I want to emphasize the following cautionary statements:

    While in the past I have stated that PWCs should cooperate with their physicians in trying the simplified treatment approach, as a result of experiences with this treatment approach that have been reported to me recently, I have concluded that it must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription nutritional supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it is now clear to me that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges and hazards. I suspect that there is still much more to be learned about possible adverse effects of applying this treatment approach among the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I believe that I have now carried this work as far as a nonclinical researcher can appropriately carry it. I am hopeful that clinicians will apply and test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    As some readers will probably be aware, I presented a poster paper describing the above-mentioned Hypothesis at the most recent IACFS conference in Florida last January. It can be found on the internet on Cort Johnson’s website:http://phoenix-cfs.org/GSHMethylationVanKonynenburg.htm

    This Hypothesis has not yet been published in the peer-reviewed literature. My emphasis up to now has instead been upon addressing questions that remained to be answered before this Hypothesis could be considered for clinical testing and application in the form of a practical treatment approach.

    The history of the development of this Hypothesis is as follows:

    In 1999, I first learned from two public talks presented by Dr. Paul Cheney that many PWCs are depleted in glutathione, and that taking steps to build glutathione can be helpful to many. Dr. Derek Enlander has since reported to me that he began injecting glutathione as part of a complex into CFS patients as early as 1991. I also found that Dr. Patricia Salvato had reported in early 1998 on her use of intramuscular injection of glutathione in 276 patients. Over the years, quite a few CFS doctors have incorporated means of building glutathione into their protocols, either by administration of glutathione itself by various routes, or by oral supplementation with glutathione precursors, such as whey protein products.

    What is glutathione, and what does it do?

    Glutathione is technically a tripeptide, which can be thought of as being like a very small protein, as it is made up of only three amino acids (while proteins are made up of many more). It is present naturally in every cell of the body, as well as in the blood, the bile and the fluid lining the lungs. The liver is normally the main producer of glutathione in the body. Glutathione plays many important roles in the body. Probably the best known are its protection against oxidative stress produced by oxidizing free radicals and other reactive oxygen species, its support for the immune system, and its role in removing a variety of toxic substances from the body.

    When glutathione becomes somewhat depleted, as it does in many cases of CFS, its normal functions are simply not performed well. Many of the symptoms of CFS as well as observed abnormal results on specialized lab tests can be traced directly to glutathione depletion, as I described in an earlier AACFS poster paper in 2004. It can be found on Cort Johnson’s website:


    As I noted in that paper, while direct efforts to build glutathione are helpful to many PWCs, for most they provide only temporary improvement and do not result in permanent restoration of glutathione levels or a cure for CFS. I suspected that a vicious circle mechanism must be involved in holding down the glutathione levels in CFS.

    Then, later in 2004, an important paper was published involving research into autism by S. Jill James and her coworkers: “Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism”
    (Am J Clin Nutr. 2004 Dec;80(6):1611-7). The study they reported showed that glutathione is depleted also in autism, and that this depletion is associated with a block in what is known as the methylation cycle (or methionine cycle).

    Before discussing this further, I want to address the question “What is the methylation cycle, and what does it do?”

    The methylation cycle is part of the basic biochemistry of the body, and is believed to operate in every cell. This cycle includes the amino acid methionine as well as S-adenosylmethionine (SAMe, used as a supplement by some PWCs), S-adenosylhomocysteine, and homocysteine. Some homocysteine is converted back to methionine, thus completing the cycle. There are two parallel pathways from homocysteine to methionine. They are the methionine synthase pathway and the BHMT (betaine homocysteine methionine transferase) pathway. The methylation cycle is directly linked to the folate metabolism and to the transsulfuration pathway.

    The methylation cycle performs many vital roles in the body. First, by means of SAMe, it supplies methyl (CH3) groups to many different biochemical reactions. Some of them produce substances such as coenzyme Q-10 and carnitine, which have been found to be depleted in many PWCs. Methylation also plays an important role in “silencing” certain DNA to prevent its expression, and in producing myelin for the brain and nervous system.

    The methylation cycle also controls the body’s response to oxidative stress, by governing how much homocysteine is diverted into the transsulfuration pathway, which contributes to determining the rate of synthesis of glutathione.

    A third important role of the methylation cycle is to control the overall sulfur metabolism of the body. In this role, besides controlling glutathione synthesis, it exerts control over synthesis of several other important substances, including cysteine, taurine and sulfate.

    When the methylation cycle is blocked at the enzyme methionine synthase, these important roles are not carried out properly. In addition, a methylation cycle block necessarily involves a block in the folate metabolism, to which it is intimately linked, and this interferes with synthesis of new DNA and RNA, among other important effects.

    Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detox system can operate properly. If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body.

    After I read the paper by S. Jill James and her coworkers (referred to above), I began to suspect that the genetic factors and biochemical mechanism they had found in autism are the same or similar to those important in CFS. A block earlier than glutathione in the sulfur metabolism, at the methylation cycle, could explain the persistent glutathione depletion in CFS. It began to dawn on me that other aspects of CFS that did not appear to be explained by glutathione depletion per se could be explained by a methylation cycle block.

    It was difficult for me initially to believe that there was a connection between autism and CFS, given the profoundly different symptoms and different affected population groups (primarily boys in autism, compared to primarily adult women in CFS). However, I knew of others who had publicly suggested such a connection in the past (Dr. Michael Goldberg in the U.S. and Prof. Malcolm Hooper in the UK), and this new study seemed to provide more detailed evidence of this connection at the genetic and biochemical levels.

    I began to look into autism in more detail, and I attended the Long Beach conference of the Defeat Autism Now! (DAN!) project in October of 2005. The more I learned about autism, the more I became convinced that we are dealing in CFS with many of the same issues at the genetic and biochemical levels. The book by Drs. Jon Pangborn and Sidney Baker entitled “Autism: Effective Biomedical Treatments” (Autism Research Institute, September, 2005) provides excellent explanations of the biochemistry of autism, and the parallels with CFS can be seen there.

    I want to emphasize that I did not develop the Glutathione Depletion--Methylation Cycle Block Hypothesis out of thin air. The autism researchers had already provided a convincing basis for this model in that disorder. S. Jill James and coworkers did much of the clinical work that underlies it. Richard Deth and his coworkers had worked out much of the theory of the methylation cycle block and had applied it to autism. Professors James and Deth had been presenting talks on their work at autism conferences. The physicians in the DAN! project (as well as Dr. Amy Yasko, though I had not yet learned of her work when I began to understand the importance of the methylation cycle block) had already been treating autism cases by measures intended to lift the methylation cycle block. What I did was to apply the results of their work to CFS, and to present a detailed biochemical and symptomological case to support the proposition that this model also applies to CFS.

    What is the essence of the Glutathione Depletion-Methylation Cycle Block Hypothesis for the Pathogenesis of CFS?

    This hypothesis proposes first that in order to develop CFS, a person must have inherited genetic variations (also called SNPs or single-nucleotide polymorphisms) in a combination of certain genes that code for enzymes and other proteins associated with the methylation cycle and related pathways.

    The hypothesis further proposes that the person must also be subjected to some combination of a variety of long-term physical, chemical, biological or psychological/emotional stressors that lowers glutathione levels to the point that a block occurs in the enzyme methionine synthase in the methylation cycle, in response to the oxidative stress that is inherent in glutathione depletion. The formation of this block is aided by the presence of the inherited genetic polymorphisms. This lowering of glutathione levels also simultaneously removes the normal protection that glutathione provides to vitamin B12 and allows the accumulation in the body of toxins that can interfere with the utilization of vitamin B12, mercury perhaps being the dominant one.

    This hypothesis further proposes that the result of the above is that the level of methylcobalamin is held too low to support the methionine synthase reaction, and it therefore becomes chronically blocked. This produces a vicious circle mechanism that causes CFS to become a chronic condition.

    Finally, this hypothesis proposes that all the features of CFS can be shown to originate from this root cause. While I have not yet demonstrated this for every feature of CFS, the first paper cited in this article explains a large number of them in detail on this basis. Previous treatments for CFS have dealt with downstream issues in the pathogenesis, but they have not completely addressed this root cause, and, in my opinion, that is why we have not seen many completely cured CFS cases up to now. Note that when I refer to cured cases, I do not mean that the genetic predisposition has been removed, but that the PWCs are healthy from the symptomatic point of view.

    As I became more convinced of the parallels between autism and CFS, I began to point out this connection to some clinicians directly and to others via the internet, as well as to PWCs in internet groups, and I began encouraging them to consider the treatments that were being used by the Defeat Autism Now! project to treat autism, focusing on unblocking the methylation cycle. A small number of PWCs tried this approach, and while some initial benefits were observed from this, it did not seem to be an effective approach over the long term, at least in the way I was suggesting that it be applied.
    I then learned of the work of Dr. Amy Yasko, N.D., Ph.D. in autism. I studied her materials, including the book written by her and Dr. Garry Gordon entitled “The Puzzle of Autism,” joined her discussion forum at
    and eventually attended her teaching seminar in Boston in October of 2006. After considering all of this, I concluded that it was likely that her treatment approach could help many PWCs, so I decided to emphasize it. An important feature of her work is her effort to tie the genetics of individuals to the biochemistry and to do tailored treatment based on genetics, again directed toward correcting the methylation cycle block, but also incorporating support for a variety of body systems and organs. I also learned that Dr. Yasko had had some experience in using her approach in cases of CFS as well as a variety of adult neurological disorders, but that she was currently focusing primarily on autism.

    I wrote a short article pointing out the connection I was seeing between autism and CFS and pointing to these treatments, and it was published in the October 2006 issue of the Townsend Letter. This can be found at the following url:


    Quite a few PWCs acted on my suggestion to try Dr. Yasko’s full treatment approach, and they are currently continuing with it. Many of them participate in the Yahoo cfs_yasko internet group, a group that was specifically formed for them, which can be found at


    Most of them are currently in the first step of this treatment approach, and they are generally reporting that this treatment is producing considerable detoxification of their bodies, as monitored by urine testing. The full Yasko treatment approach involves detailed genetic and biochemical testing, and is rather expensive and complex. While some PWCs are in a position to pursue this treatment and appear to be doing so successfully, it seemed to me that there are many others for whom this approach is beyond reach, either for economic or cognitive reasons or both. Practicing physicians have generally also found this treatment to be somewhat cumbersome to incorporate into their practices because of the complexity and the considerable time and expense required to tailor the treatment to each individual patient.

    In response to these issues and to requests from clinicians for a written description of practical CFS treatment based on this hypothesis, I wrote an article that outlined the full Yasko treatment approach, but also described a simplified treatment approach that incorporated nutritional supplements that form the core of Dr. Yasko's so-called "step 2." This is the step in her treatment program that involves actually lifting the block in the methylation cycle. This article can be found on Cort Johnson’s website:


    When I proposed this approach, I did not know what fraction of the PWC population would be able to tolerate the resulting die-off of pathogens and mobilization of toxins that would result from the consequent ramp-up of the immune system and the detox system after they had been dysfunctional for such long times during the long illness duration of many PWCs. As can be seen in the above-cited article, I was not very optimistic. However, I still thought it was worth a try, since the existing full Yasko approach did not seem to have the characteristics necessary for wide use in the CFS community, and it appeared that lifting the methylation cycle block was the key to recovery for many PWCs. With the help of a woman (name omitted to protect her privacy) who is currently receiving the full Yasko treatment herself, I selected a basic set of seven supplements from Dr. Yasko's step 2, as discussed in the above-mentioned article.

    After this article was presented on the internet, another woman (name omitted to protect privacy) decided to try this simplified treatment approach. As a result of benefits that occurred almost immediately, she reported her experience on the ImmuneSupport.com CFS discussion board. In response to her reports, others began to try this approach. This began in February of 2007, and the number of people on this treatment has continued to grow, the longest duration of treatment now being somewhat more than four months, ranging down to some as short as a few days.

    As experience has been gained, I have shortened the initial list of seven supplements in the suggested simplified treatment approach to five, as described below. The cost of the basic five supplements is somewhat more that two dollars per day.

    After suggesting this treatment approach, I initially attempted to maintain a list of those who were trying it, based on reports I received from physicians and individual PWCs. However, when the number of people I was aware of grew past 60, I no longer felt that I could maintain a complete count. Many have been reporting their progress periodically to the ImmuneSupport board, and a new Yahoo group also has been established recently for PWCs trying this approach, at the following url:


    I will now describe the current version of the simplified treatment approach based on the Glutathione Depletion--Methylation Cycle Block Hypothesis.

    All the supplements used in this approach can be obtained from the http://www.holisticheal.com site, or all but the Complete Vitamin and Neurological Health Formula can be obtained elsewhere. Please note that I have no financial interest in any of the supplements that I have suggested in the simplified treatment approach.

    As I mentioned above, these supplements and dosages have been selected by Dr. Amy Yasko as part of her complete treatment approach, as described in her book "The Puzzle of Autism." Substitutions or changes in dosages may not have the same effect as the combination of supplements and dosages suggested, although it is wise to start with smaller dosages than those given below, and it is also wise to start with one supplement at a time and work up to the total of five supplements, to test carefully for adverse effects. It will take somewhat longer to reach the suggested combination and dosages by this route, but early experience has shown that this is prudent.

    As I also mentioned above, this treatment approach should be attempted only under the supervision of a licensed physician, so that any individual issues that arise can be properly dealt with. It's important to "listen to one’s body" when doing this treatment. If the detox becomes too intense to tolerate, or if significant adverse effects appear, as described below, the supplements should be discontinued, and the situation should be evaluated immediately by a licensed physician. This treatment will produce die-off and detox symptoms as the immune system and detox system come back to normal operation and begin ridding the body of accumulated infections and toxins. This appears to be inevitable, if health is to be restored. It may require considerable judgment and clinical experience on the part of the physician to distinguish between inevitable die-off and detox symptoms and possible adverse effects.

    While die-off and detox symptoms are occurring, there will also likely be improvement in CFS symptoms over time. The intensity of the expected die-off and detox symptoms can be decreased by lowering the dosages of the supplements. These symptoms probably result from the body’s limited rates of excretion of toxins. If toxins are mobilized more rapidly than they can be excreted, their levels will rise in the blood, and it is likely that this will produce more severe die-off and detox symptoms. By lowering the dosages, and thus slowing the rate of mobilization of toxins, their levels in the blood can be lowered, thus ameliorating the symptoms.

    The temptation to try to get better faster by increasing the dosages suggested by Dr. Yasko must be resisted. In particular, the suggested dosages for the FolaPro and the Intrinsi/B12/folate supplements should not be exceeded. Some who have done this have experienced very unpleasant levels of detox symptoms that had momentum and did not decrease rapidly when the supplements were stopped.

    As improvements in energy level and cognition occur, it is tempting for PWCs to overdo activities, which, early in the treatment, can still result in “crashing.” It is wise to resist this temptation as well, because complete recovery will not occur overnight with this treatment approach.

    I am not aware of negative interactions between the five basic supplements and prescription medications used by physicians in treating CFS. However, this treatment approach should not be attempted without considering together with a licensed physician possible interactions between the supplements included in it and any prescription medications that are being taken. This is particularly important if addition of SAMe to the basic five supplements is contemplated.

    When this treatment approach is used together with prescription medications, a licensed physician must be consulted before discontinuing any prescription medications. Some of them can cause very serious withdrawal symptoms if stopped too abruptly.

    If this treatment approach is begun by a PWC who is taking a thyroid hormone supplement for a hypothyroid condition, the PWC and the supervising physician should be alert to the possibility that HYPERthyroid symptoms, such as palpitations and sweats, can occur, even very soon after starting this treatment. The physician should be consulted about possibly adjusting or eliminating the thyroid hormone supplementation if this occurs.

    Here are the five supplements, as found in Dr. Yasko’s book “The Puzzle of Autism,” (p. 49) and as described in detail on her website http://www.holisticheal.com :

    1. One-quarter tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    3. Up to two tablets (It’s best to start with one-quarter tablet and work up as tolerated) Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    4. One softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    5. One sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    The first two supplement tablets are difficult to break into quarters. One of the PWCs who is following the simplified treatment approach has suggested that an alternative approach is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife or single-edged razor blade and a flat surface. The powders can be taken orally with water, with or without food, and do not taste bad.

    Some people have asked what time of the day to take the supplements. A few have reported that the supplements make them sleepy, so they take them at bedtime. If this is not an issue, they can be taken at any time of the day, with or without food.

    Since some questions have been asked about which components of this treatment approach are essential, and since some PWCs appear to be taking augmented versions of the simplified GD-MCB treatment approach that I wrote about in my January treatment paper (cited above), I want to offer some comments to help PWCs and their physicians to evaluate which supplements to include in treatment.

    FolaPro--This is included because many PWCs have a genetic polymorphism in their MTHFR (methylene tetrahydrofolate reductase) enzyme that affects the production of 5-methyltetrahydrofolate (which is identical to the product FolaPro). This form of folate is the one used by the methionine synthase enzyme, which is the enzyme that appears to be blocked in many cases of CFS. If PWCs were to have their genetics characterized, as in the full Yasko approach, they would know for sure whether they needed this supplement, but in the simplified approach I suggest simply giving it to everyone. This should not present problems, because the total folate dose, including the FolaPro and the folates in the Intrinsi/B12/folate supplement, amounts to 400 micrograms per day, which is within the upper limit for folate supplementation for adults and for children four years of age and older, as recommended by the Institute for Medicine of the U.S. National Academy of Sciences.

    Intrinsi/B12/folate--This supplement contains three forms of folate--FolaPro, folinic acid (identical to the drug leucovorin) and folic acid (the most common commercial folate supplement). It also has some cyanocobalamin (the most common commercial vitamin B12 supplement) and some intrinsic factor (identical to that normally secreted by the stomach to enable vitamin B12 absorption by the gut) as well as some other things. The folinic acid is helpful because some people can't use ordinary folic acid well, as a result of genetic issues. Also, this helps to supply forms of folate that will make up for the low tetrahydrofolate resulting from the block in methionine synthase, until this is corrected. This enzyme normally converts 5-methytetrahydrofolate to tetrahydrofolate, which is needed in other reactions. This supplement also has some intrinsic factor and some cyano-B12 to help those who have a type of pernicious anemia that results from low production of intrinsic factor in the stomach and which prevents them from absorbing B12 in the gut. Vitamin B12 is needed by the enzyme methionine synthase, in the form of methylcobalamin, but this supplement has cyanocobalamin, which must be converted in the body by glutathione and SAMe to form methylcobalamin. As glutathione and SAMe come up, this should become more effective.

    Complete Vitamin and Ultra-Antioxidant Neurological Health Formula--This is Dr. Amy Yasko's basic high-potency general nutritional supplement. This is a general foundation for the biochemistry of the body. I suspect that this supplement is better for PWCs trying the simplified treatment approach than other high-potency general nutritional supplements, because it has particular things needed for dealing with a methylation cycle block, including some TMG and sulfur metabolism supplements as well as nucleotides. It is also high in magnesium and low in calcium, and has no iron or copper. As far as I know, there are no other supplements with all these characteristics. I therefore believe that this supplement is important for use in the treatment approach. The TMG helps to stimulate the BHMT pathway in the methylation cycle, and that helps to build SAMe, which is needed by the parallel methionine synthase pathway. The nucleotides will help to supply RNA and DNA for making new cells until the folate cycle is operating normally again.

    Phosphatidylserine complex—This contains various phosphatidyls and fatty acids, which will help to repair damaged membranes, including those in cells of the brain and nervous system. It should help with the cortisol response. It also has some choline, which can be converted to TMG (betaine) in the body, to help stimulate the BHMT pathway.

    Perque B12--This is sublingual hydroxocobalamin. The dosage is fairly large, in order to overcome the blocking of B12 by toxins such as mercury in CFS. As I mentioned above, B12 is needed to stimulate the activity of methionine synthase. Methylcobalamin is actually the form needed, but some people cannot tolerate supplementing it for genetic reasons, and I'm also concerned that people with high body burdens of mercuric mercury could move mercury into the brain if they take too much methylcobalamin. Methylcobalamin is the only substance in biological systems that is known to be able to methylate mercury. (Note that methylcobalamin is the substance used by bacteria to perform methylation on environmental mercury, and the resulting methylmercury is concentrated in the food chain up to the large predatory fish and enters the human diet.) Methylmercury can readily cross the blood-brain barrier. Methylation of mercury by methylcobalamin has been reported in the literature to occur within the bodies of guinea pigs in laboratory experiments. Perque B12 is sublingual to compensate for poor B12 absorption in the gut of many people.

    There are also two other supplements that were included in the earlier version of the simplified approach:

    SAMe--This is normally part of the methylation cycle. Depending on genetic variations (SNPs or polymorphisms) some PWCs can't tolerate much of this, and some need more. If PWCs can't tolerate this, they should leave it out, because stimulating the BHMT pathway, using TMG and choline in the other supplements, will probably make enough SAMe for them naturally. For people who can tolerate SAMe, a dosage of 400 mg per day is suggested.

    Methylation Support RNA Formula--This is a mixture of RNAs that is designed to help the methylation cycle. It is somewhat expensive, and is not essential, but is helpful if people can afford it. Dr. Amy Yasko has since advised me that if a PWC desires to take only one of her RNA Products, she would suggest choosing either the Health Foundation RNA Formula or the Stress Foundation RNA Formula, rather than the Methylation Support RNA Formula, as being most helpful to take the edge off the detox.

    The above suggested list of supplements may not be optimum, and future clinical studies may produce an improved protocol. I think that the forms of folate and B12 are probably essential, because they target what I believe is the root issue in the abnormal biochemistry of CFS. I think the Complete supplement is important to support the general biochemistry and to correct deficiencies that might be present in essential nutrients, as well as to support the methylation cycle and the rest of the sulfur metabolism. I think that some way of stimulating the BHMT pathway is important, also, to bring up SAMe, and the phosphatidyl serine complex provides this, as does the TMG included in the Complete supplement.

    With regard to possible interactions between the supplements in the simplified treatment approach and other supplements that PWCs may be taking, I am aware of two: (1) I would not recommend taking additional folate beyond what is suggested above, since the various forms of folate compete with each other for absorption, and it is important to get enough of the active forms into the body. Also, it is important not to take too much folate, as mentioned above, because this can cause the detox to develop a momentum, so that it will take some time to slow it down if you want to do that. (2) I would also not recommend taking additional trimethylglycine (TMG, also called betaine) or additional forms of choline, such as phosphatidylcholine or lecithin, since that may stimulate the BHMT pathway too much at the expense of the methionine synthase pathway. The betaine-HCl used to augment stomach acid is something that may have to be omitted while doing this treatment, too, since it will contribute to this stimulation.

    Adding glutathione support will help some people, as will adding molybdenum.
    As more things are added, though, one is moving toward the full Yasko approach, which is more complicated and expensive. If this is done, I recommend that it be done with the guidance of Dr. Yasko and under the supervision of a personal physician. The simplified treatment approach appears to work well by itself for many PWCs, but others may find that the die-off and detox (or even adverse effects) from this approach used by itself are too severe. In those cases, the PWCs could consult “The Puzzle of Autism,” sold on Amazon.com, to consider together with their doctors what else discussed there might help them. If the simplified approach seems to help to some degree, and it captures one’s attention for that reason, but it still either does not accomplish all that is desired, or it is not tolerated, then perhaps the next step would be to consider the full Yasko treatment. At least then there would be stronger motivation to look into it. Otherwise, it can appear very daunting to many PWCs.

    The reported responses to this treatment approach have mainly involved a combination of two categories of effects: (1) improvements in some of the common CFS symptoms (some of them quite rapid and profound), and (2) intensification or initial appearance of a variety of symptoms that appear to result from increased detoxification and immune system attack on infections. The former are most welcome, and they are what continue to motivate the people on this treatment, in the face of the detox and die-off symptoms, which are unpleasant but appear to be inevitable, given the large body burdens of toxins and infections that many PWCs have accumulated during their illness, lacking adequate detox capability and cell-mediated immune response during that time.

    In addition to these main responses, a few PWCs have reported adverse effects, some of them quite serious. These are discussed below. A few of those who have started the treatment have stopped it for various reasons, including adverse effects. Some have taken breaks from the treatment and have then returned to it or are planning to do so.

    While this informal testing of the simplified treatment approach currently is not being carried out in a controlled fashion, and while not all the PWCs trying it are using the complete suggested complement of supplements, it is nevertheless possible to state that the treatment appears to be working for quite a few PWCs, though not all.

    The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

    1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
    2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
    3. Termination of excessive urination and night-time urination.
    4. Restoration of normal body temperature from lower values.
    5. Restoration of normal blood pressure from lower values.
    6. Initiation of attack by immune system on longstanding infections.
    7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of “crashing.”
    8. Lifting of brain fog, increase in cognitive ability, return of memory.
    9. Relief from hypoglycemia symptoms
    10. Improvement in alcohol tolerance
    11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
    12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
    13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
    14. Return of ability to read and retain what has been read.
    15. Return of ability to take a shower standing up.
    16. Return of ability to sit up for long times.
    17. Return of ability to drive for long distances.
    18. Improved tolerance for heat.
    18. Feeling unusually calm.
    19. Feeling "more normal and part of the world."
    20. Ability to stop steroid hormone support without experiencing problems from doing it.
    21. Lowered sensation of being under stress.
    22. Loss of excess weight.

    The following reported symptoms, also gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:

    1. Headaches, “heavy head,” “heavy-feeling headaches”
    2. Alternated periods of mental “fuzziness” and greater mental clarity
    3. Feeling “muggy-headed” or “blah” or sick in the morning
    4. Transient malaise, flu-like symptoms
    5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
    6. Dizziness
    7. Irritability
    8. Sensation of “brain firing: bing, bong, bing, bong,” “brain moving very fast”
    9. Depression, feeling overwhelmed, strong emotions
    10. Greater need for “healing naps.”
    11. Swollen or painful lymph nodes
    12. Mild fevers
    13. Runny nose, low grade “sniffles,” sneezing, coughing
    14. Sore throat
    15. Rashes
    16. Itching
    17. Increased perspiration, unusual smelling perspiration
    18. “Metallic” taste in mouth
    19. Transient nausea, “sick to stomach”
    20. Abdominal cramping/pain
    21. Increased bowel movements
    22. Diarrhea, loose stools, urgency
    23. Unusual color of stools, e.g. green
    24. Temporarily increased urination
    25. Transiently increased thirst
    26. Clear urine
    27. Unusual smelling urine
    28. Transient increased muscle pain

    Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and cause—effect relationships are difficult to determine exactly from the available information, I’m hopeful that it will be helpful to clinicians and other PWCs:

    1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: “Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . .” This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: “I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest.” This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

    2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

    3. A third person had a history of autoimmune disease, including Sjogren’s syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced “a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc.” She also experienced a severe flare of Sjogren’s syndrome, with “very dry mouth, dry eyes, and severe eye pain.” Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with “vomiting, vise-like headache, and shaking.” She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogren’s syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.

    There are many questions remaining to be answered about this treatment approach, including the following:

    1. For which PWCs would this be an appropriate treatment approach?
    2. For what fraction of the entire PWC population will this treatment approach be beneficial?
    3. How can PWCs who are likely to experience adverse effects from this treatment approach be identified beforehand, so that these effects can be avoided?
    4. Are there PWCs who are too debilitated to be able to tolerate the detoxing and die-off processes that result from this treatment approach, and if so, will the full Yasko treatment approach be suitable for them?
    5. Will the simplified treatment approach actually lead to continuing improvements over longer times for those who find it beneficial, all the way to cured cases?
    6. Will the simplified treatment approach be effective in cases of "pure fibromyalgia" as it appears to be in many cases of CFS?
    7. How can this treatment approach be further improved?

    And many more.

    However, the results to date seem encouraging. I suspect that many PWCs can be helped by this treatment approach or something similar to it. I also believe that the appearance of improvement in such a wide range of CFS symptoms when this treatment approach is used provides evidence that a block in the methylation cycle does in fact lie at the root of the biochemical and physiological derangements found in many PWCs, or very near to it. The wide range of symptoms that appear to be associated with die-off and detox appear to give evidence that this treatment is in fact stimulating more normal operation of the immune and detox systems.

    I want to reiterate what I wrote near the beginning of this article: This treatment approach must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it must be pointed out that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges. I believe that there is still much more to be learned about the possible hazards of applying this treatment approach to the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I am not a licensed physician, but a researcher. I believe that I have carried this work as far as a researcher can appropriately carry it. I am hopeful that clinicians will further test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    I also hope that physicians or their patients who decide to try this treatment approach will let me know how it works for them, though I may not be able to answer all the emails I receive, as their volume is growing.

    Rich Van Konynenburg, Ph.D.
    Independent Researcher

  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I am very sorry for how long it took for you to be diagnosed. You will find that there are many theories and treatments that are touted. This is not like other illnesses where you go to the doctor, get diagnosed and then given a medicine that helps.

    CFS is so complex. It involves your digestive, neurological, endocrine, immune and other systems. Then there are abnormalities on a cellular, subcellular and molecular, even in the DNA level. Different patients have one part causing more of a problem than another. Then there are stages with different symptoms. So understand that there is no one treatment yet that works for all. And really, your goal should be symptom improvement. Many people do find improvement by some of the treatments offered, or combination of treatments.

    The research now is to trace back all the abnormalities that are seen, to see what the root is. And then see what can fix that. There has been a lot of progress lately. Diagnostic tests by some research labs are estimated to come in the next year or two. Some drugs are now in trials. When a drug company has some test behind it that declares some improvement, then we will see commercials. The commercials will raise awareness and validity of the illness.

    So what do you do? Try everything all at once? This is a case where you must make your own decisions. There is no standard protocol. You must become your own treatment specialist.

    Much of what you will see will be Greek to you. Take it bit by bit. Focus on what your main symptom is at the time.

    Also, since much is still in research stage, there is controversy connected with everything with this illness. The name is controversial, the treatments are controversial, how much is psychological and how much is organic is controversial. So take it all with a grain of salt.

    Another poster recommended the Fibro and Fatigue Center. Some swear by them. Some think they are nothing but a money making scam. Another controversial part of this illness. I am in between. I went to the one in Atlanta. I am better and I attribute it to their treatment. But I think their treatment is way expensive and some of their supplements you can find cheaper elsewhere and I didn't do their intravenous treatment after the first two visits. I question the need for it. But I can't say they don't help. Money is certainly a factor there, but I am glad I went. The test results were extremely valuable.

    Brain Fog. I have had two problems. I define the two differently, but I don't know if I am right. The forgetfulness, missing of details, etc. I call "cognitive problems." Now I had times where I would almost be in a trance. My husband would talk to me and I would look at him, but would only say yes or no. I was not able to dialogue. I was in a bit of a stupor. I call that "brain fog." Others will have a different opinion.

    Besides becoming your own treatment specialist, I can give you the following recommendations:

    Avoid stimulants. They just push your body when your body is needing to heal. Taking caffeine or prescription stimulants is like taking DayQuil when you have the flu. It can cover up the illness so you function, but what your body really needs is what doctors always recommend for the flu- lots of rest and lots of liquids.

    Do not push when you get tired. When you feel tired / fatigued, your body is saying I need to recharge. Our bodies can not store energy like a health person. Think of it this way, when your body is tired, and you push, then your body starts eating itself (I am not saying it does that, I am emphasizing the harm that is being done.)

    Accept the limitations of your new life. You do not and may never have the life you wanted. But that does not mean you can not have an enjoyable life. You may not be able to go parasailing, but you may be able to lay on the beach and watch your family do it. And that has its own joy. Find joy in simple pleasures. Just being outside resting on my back porch and listening to the birds or studying the leaves in the trees, looking at their shape, petting a cat sitting on your lap, find joy in these pleasures.

    Avoid sugar and simple carbohydrates. Americans are taking in too much sugar. Cokes and sweet tea, need to stay away. It does more damage to a person with CFS.

    Value yourself for who you are, not what you can do. If your husband were to suddenly have a stroke and become disabled, and you were able to, then you would stay with him and care for him. And you would tell him not to feel guilty, despite the changes this brings to both of you. Your illness is no different. Your value to your family is in your wisdom, good nature, and character. So reject the guilt. At some point in a marriage, one of them will get sick / disabled or will die. It could happen as a result of a car accident or anything. Just like the other challenges of life, children and death of parents, the sickness is what you handle together. Marriage is not 50 / 50, it is both giving 100% loyally, come what may. So it happens to be you, so what. It could easily have been him. Either way, "in sickness and in health" are not just words, they are a commitment. You are still a wife, mother and daughter. And you can still offer much to the loved ones in your life. Since it isn't energy, then offer other things. I heard on the radio of a woman who had school age children and she was bedridden (not CFS). She was considering taking her own life because she felt like a burden and she felt guilty that she could not go to her daughter's games, etc. The radio host pointed out that her daughter can climb in her bed and the mom can help with homework. The mom can give advice on dating and problems with friends. In other words, she can still be a mom. And if she killed herself, her daughter would not have those things.

    Pace yourself. If you want to do something on one day, then stay home and rest before that. It will depend on your level of illness as to how much you need to rest. I used to have to rest for four days to be active for four hours on the next day. Most of the time, I can store up by resting one day and have four hours of energy the next day. Weather, stress and my hormone cycle can throw that off, sometimes. In fact, you should include some rest time during the day. And rest for someone with CFS, means no sensory input. Depending on your level of illness, you may find it helpful to do complete rest periods, after eating for thirty minutes or an hour at a time. Just remember, our bodies need more nutrition and rest to build up energy than healthy people do. Kind of like a baby.

    Hope this helps.


  6. deepcanyon1

    deepcanyon1 New Member

    I just wanted to take the time to thank everyone for so much info and for taking their time to help me. Its so much to take in right now that I am gonna have my hubby sit down with me later and go through it all and check it all out. All of you are amazing and don't know how you are doing it and staying so positive. The only problem that I have is that with the anxiety problem one of my worse phobias are meds. So not sure how I will get over that one but the docs have given me so much amoxicillin in the last 10 yrs i am afraid that that has something to do with my system to from what i am reading, I am at a point where I cannot get a pill of any kind in my mouth without thinking i am gonna have a reaction and die. My husband asks me why I even take the scripts an have them filled if i am not going to take them but when i red all the side effects i cant get through it. So I just take the klonopin and thats it. When i have a headache or pains in my arms or legs i just deal with it instead of taking anything and it so bad sometimes.

    So not sure how i would get through detoxing my body. Maybe someone can help me if they have the phobias of meds, docs , and dying. But I will be back later to check the site and do some more reading I need to take notes and that way i won't forget what i have read when i am asked something from my husband at times.
    Thanks again for the help

  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    And, I forgot....

    Getting effective sleep is another recommendation, in fact, most important. A few meds help to go to sleep. But a few help get the stage 3 and 4 that people with CFs and Fibromyalgia have trouble with. Xyrem being one of them. No matter what, you need to look into "sleep hygiene". This involves deep breathing, no T.V. or computer an hour before going to bed, taking a warm bath, but not right before you to to bed, stretching, mood music, right temperature in the bedroom, getting in the sun right when you wake up and other things. Google "sleep hygiene" and you will find lots of info. This is very important. You can't heal if you can't get effective sleep. It's not just the number of hours. The systems affected by CFS are healed in stage 3 and 4, and people with CFS may be asleep but not get enough stage 3 and 4. So make sleep a priority. It is the first step.

  8. deepcanyon1

    deepcanyon1 New Member

    Thanks again for all the input from everyone. But I am wondering if with some of you saying that they were misdiagnosed with CFS then how am to know and believe that this really is what i have even tho I have all the symptoms?? And does anyone else have an elevated ImmuglobulinM with this or the Fibro? I just am going crazy trying to except and figure all of this out.
    Thanks again
  9. greatgran

    greatgran Member

    When I read your post you sound a lot like me in many ways. It has been 8 years now since I got a Dx of "I think its CFS". I also was Dx with anxiety and put on xanax and still on them. Went to many doctors, tried many things . The doctors seemed clueless or they didn't give a darn and would send me to another. I feel I have never had the needed test but I am sick of going to them and no answers.

    I do wish I had some help for you as I don't want to sound negative but I can't think of anything that has helped me other than the xanax . I think I would be out of my mind without them. I take 1/4 mg four times a day and more if needed.

    I once suffered with anxiety/depression and agoraphobia but was doing great not on any meds then wham the CFS or I thought I was dying. Since then my anxiety/depression and agoraphobia is soooooooooo much worse.

    I sure can relate to how you feel where family is concerned, i want go into my family situation but I sure do have the guilt of not being able to be healthy for them. I am mostly housebound.

    I have a lot of leg aches , my pain in mostly an achy pain to the bones in different areas at different times. I feel fatigues, weird in the head, sometimes off balance, sometimes a lot of crying and anxiety like I am going completely crazy and can't seem to control it.

    As far as the brain fog goes, I do have time when things just don't register with me, I can't seem to read and understand what I have read but mainly its the weird head feeling I just can't describe it. Like the inside of my head feels weird or dizzy. The only think that seems to help is go to bed and get lots of rest.

    Then far and few between I will have a day I feel almost "normal" and its wonderful but just to have the old feelings return.

    I am never the same from day to day, can't make plans cause I never know how in the heck I will feel , by plans I mean can I take a shower, maybe cook a meal etc. Then I have had days I can actually get out of the house.

    Enough on me, I am so sorry you had such a bad experience with the doctor and wish I could offer you some help but all I can do is relate.

    Welcome, and please come and share how you are doing, good or bad that is what we are all here for.

    God BLess,