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I Don't Have a Diagnosis. Someone Help, Please! Freddd?

Discussion in 'General Symptoms' started by Mary Jane, Apr 16, 2012.

  1. Mary Jane

    Mary Jane

    Hello all,

    I wish I was here under more pleasant circumstances. :( Any information anyone can provide me with, I will greatly appreciate.

    Here's my story:
    I began taking vitamins B6 (100mg) and Folic Acid (400 mcg) on approximately September 6, 2010. On September 11, 2010, I was rushed to the hospital and was diagnosed with having had a Grand Mal Seizure. I informed the ER doctor that I knew it was the vitamins because they were the only change to my routine medically. I don't have a history of seizures, in my family, etc. I was 35 when this happened.

    I went to see my primary physician who then referred me to a neurologist, who then sent me for several tests, and he agreed with me that the seizures were caused by the pyridoxine in B6, or so he thought. I've had 3 MRI's and 3 EEG's. All negative.

    I had another seizure 4 months later in January 2011, then a 3rd seizure in March 2011. I then began taking seizure medication and had several more tests conducted to determine a cause. I had a vitamin D deficiency(11.8), a high sed rate(28), and a high TSH Thyorid Level(6.040). Those are just a few of the tests I can think of off hand. The past few years, I've been experiencing some lactose intolerance. After reading Freddd's information, I thought I may have a B12 deficiency because of my symptoms below:

    I already had a few symptoms that seemed to be unrelated: tingling in my fingers and toes (for over a decade-off and on), ezcema, tinnitus. The aformentioned symptoms have gone on for years, but the symptoms below mostly came about after the first seizure. And it seems like they come one after the other. It's scary because I don't know what's going to happen to me next.

    1.) Dizziness/Blurred vision
    2.) Headaches
    3.) Eye Spots
    4.) Tinnitus
    5.) Seizures
    6.) Tingling on the tip of the tongue, tingling on the tips of the fingers, and tingling on the back of the thigh.
    7.) Eczema
    8.) Thyroid disturbance
    9.) White spots on skin
    10.) Genital pain
    11.) Popping Joints/bone pain/shoulder pain/arthritic pain
    12.) Thumb pain from palm to wrist
    13.) Difficulty swallowing sometimes
    14.) Striations in fingernails
    15.) Myclonic jerks right as I fall asleep
    16.) Dyspepsia-previously upset stomach, nausea, and vomiting-on rare occasions
    17.) Irritability
    18.) Thick, jellied, sticky mucus
    19.) Poor hair condition
    20.) Metallic taste in mouth
    21.) Splits/sores at the corners of mouth
    22.) Abdominal pain
    23.) Dj vu experiences
    24.) Swollen glands (lymph nodes)-ENT performed a biopsy to rule out cancer
    *Gastritis/Acid Reflux/occasional heartburn-caused malabsorption.
    *Unexplained cysts-may not be related at all

    I have seen 3 neurologists (one at the Mayo clinic), an endicronologist, a gastroenterologist, a hematologist, an ENT, (a toxicologist looked at my records, but said he couldn't help), and my hematologist is going to refer me to a rheumatologist, even though I've been checked for several autoimmune diseases and other ailments:

    1.) Check B12 and homocysteine and methylmalonic levels

    2.) B6 level.

    3.) Anemia-pernicious, macrocytic, Iron deficiency anemia

    4.) Calcium, Iron, Vitamin D (25OH) test.

    5.) Mercury (Amalgam) poisoning.

    6.) Celiac Disease.

    7.) Lyme Disease (Western Blot assay antibody test).

    8.) Crohns Disease.

    9.) Parasite (H pylori organisms).

    10.) Graves Disease.

    11.) Lupus.

    12.) MS.

    13.) Arthritis.

    14.) Gastritis-Atrophic or Erosive and low stomach acid.

    All were negative. In July 2011, my Vitamin B12 level was 826 and my Folate (Folic Acid) Serum was 16.5. A little after that, I started taking sublingual B12 Cyanacobolamin, until I realized I should take Methylcobolamin. My doctor finally approved my UMMa test, but that was after I already had about 2 B12 shots--don't know if that mattered or not. The UMMa had different results, so I don't know what I would need to include in this post to help me.

    I also know that the seizure meds I'm on (Lamictal-300mg) can decrease my B12 as well. As of a week ago, my blood serum B12 is over 1999 ((because I have been getting Hydroxocobolamin shots every month and taking Jarrows Methyl B12 (5000mcg) daily)) so my hematologist told me to stop taking it. And he told me to stop taking Iron as well, even though my iron level was 235. He said that the total iron was normal and I didn't need a supplement. **sigh** I can't remember everything else I needed to mention right now.

    I'm so confused and scared. Can someone please help me? Doctors won't listen. Symptoms are becoming more frightening. And my husband and I would like to actually have children. I've never been sick in my life before this(I didn't even get headaches!) and I don't know what to do.

    I know there are some very smart folks on here that can help. Thanks!
  2. Sushi

    Sushi Moderation Resource Albuquerque

    Hi Mary Jane,

    So sorry to read your story. Most of us here can identify though, though our symptoms vary.

    I don't think you mentioned your general energy levels, ability to work and carry on normal day-to-day activities, whether you find standing or walking difficult, whether you have checked for changes in pulse and blood pressure when doing different activities. Also whether you have been checked for different viruses and had a comprehensive gut/stool panel (not just parasites).

    As we are focused on ME/CFS, these are the kind of things we might ask. Also, do you feel worse after activity or exercise--not immediately usually, but say the next day?

    You might also like to sign into chat (lower right hand corner) and join others in the chat room and compare notes. You can also open a chat with any individual on the chat list and talk to them if they have posted something that interests you.

    I hope you get some good ideas and information here. There are lots of knowledgeable people here who have tried most every type of treatment and means of diagnosis.

    Best wishes and welcome to the forum,
  3. richvank

    richvank Senior Member

    Hi, Mary Jane.

    I'm very sorry to read about what you have been going through. In addition to the things Sushi mentioned, I would suggest that you be tested for Lyme disease (because you have neurological symptoms and symptoms involving the joints). I would also suggest that you ask your doctor to order the methylation pathways panel to find out if you have a partial methylation cycle block and glutathione depletion. In my view, these are hallmarks of ME/CFS. Contact information for this panel is pasted below.

    The standard Lyme disease tests miss too many cases. The tests offered by www.Igenex.com are better. There is also a new Lyme culture test that may turn out to be the most reliable. It is available from http://www.advanced-lab.com/spirochete.php

    Best regards,


    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinicians letterhead.

    Available from:

    Health Diagnostics and Research Institute
    540 Bordentown Avenue, Suite 2300
    South Amboy, NJ 08879
    Phone: (732) 721-1234
    Fax: (732) 525-3288

    Email: lab@vitdiag.com

    Lab Director: Elizabeth Valentine, M.D.

    Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone, or you can use the interpretive guide below:

    March 25, 2012

    Interpretation of Results of the Methylation Pathways Panel

    Richard A. Van Konynenburg, Ph.D.
    Independent Researcher

    Disclaimer: The Methylation Pathways Panel is offered by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. I am not affiliated with these laboratories, but have been a user of this panel, and have written these suggestions at the request of Tapan Audhya, Ph.D., Director of Research for the Health Diagnostics lab, for the benefit of physicians who may not be familiar with this panel. My suggestions for the interpretation of results of the panel are based on my study of the biochemistry involved, on my own experience with interpreting panel results as part of the analysis of a fairly large number of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) over the past four years, and on discussion of some of the issues with Dr. Audhya. I am a researcher, not a licensed physician. Treatment decisions based on the results of applying this panel and its interpretation to individual cases are the responsibility of the treating physician.

    Application: In addition to being useful in analyzing cases of ME/CFS, this panel can also be usefully applied to cases of autism and other disorders that involve abnormalities in glutathione, methylation and the folate metabolism.

    The panel includes measurement of two forms of glutathione (reduced and oxidized), S-adenosylmethionine (SAMe), S-adenosylhomocysteine (SAH), adenosine, and seven folate derivatives.

    According to Dr. Audhya (personal communication), the reference ranges shown on the lab reports for each of these metabolites were derived from measurements on at least 120 healthy male and female volunteer medical students from ages 20 to 40, non-smoking, and with no known chronic diseases. The reference ranges extend to plus and minus two standard deviations from the mean of these measurements.

    Glutathione (reduced): This is a measurement of the concentration of the
    chemically reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. The reference range is 3.8 to 5.5 micromoles per liter.

    Glutathione plays many important roles in the biochemistry of the body, including serving as the basis of the antioxidant enzyme system, participating in the detoxication system, and supporting the cell-mediated immune response, all of which exhibit deficits in CFS. The level of GSH in the plasma is likely to be more reflective of tissue intracellular glutathione status than the more commonly and more easily measured red blood cell or (essentially equivalent) whole blood glutathione level, which is about three orders of magnitude greater, because red blood cells are normally net producers of glutathione. Also, knowledge of the level of the reduced form, as distinguished from total (reduced plus oxidized) glutathione, which is more commonly measured, is more diagnostic of the status of glutathione function.

    In order to be able to approximate the in vivo level of reduced glutathione when blood samples must be shipped to a lab, it is necessary to include special enzyme inhibitors in the sample vials, and these are included in the test kit supplied by these two laboratories.

    Most people with chronic fatigue syndrome (PWCs), but not all, are found to have values of GSH that are below the reference range*. This means that they are suffering from glutathione depletion. As they undergo treatment to lift the partial methylation cycle block, this value usually rises into the normal range over a period of a few months. I believe that this is very important, because
    glutathione normally participates in the intracellular metabolism of vitamin B12, and if it is low, a functional deficiency of vitamin B12 results, and insufficient methylcobalamin is produced to support methionine synthase in the methylation cycle. In my view, this is the mechanism that causes the onset of ME/CFS. This functional deficiency is not detected in a conventional serum B12 test, but will produce elevated methylmalonate in a urine organic acids test. In my opinion, many of the abnormalities and symptoms in ME/CFS can be traced directly to glutathione depletion.

    Anecdotal evidence suggests that PWCs who do not have glutathione depletion do have abnormalities in the function of one or more of the enzymes that make use of glutathione, i.e. the glutathione peroxidases and/or glutathione transferases. This may be due to genetic polymorphisms or DNA adducts on the genes that code for these enzymes, or in the case of some of the glutathione peroxidases, to a low selenium status.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. The reference range is 0.16 to 0.50 micromoles per liter.

    Normally, oxidized glutathione in the cells is recycled back to reduced glutathione by glutathione reductase, an enzyme that requires vitamin B2 and NADPH. If this reaction is overwhelmed by oxidative stress, the cells export excess GSSG to the plasma. In some (but not all) PWCs, GSSG is elevated above the normal
    range, and this represents oxidative stress. It is more common in CFS to see this level in the high-normal range. This value may increase slightly under initial treatment of a partial methylation cycle block.*

    Ratio of Glutatione (reduced) to Glutathione (oxidized): This is not shown explicitly on the panel results, but can be calculated from them. It is a measure of the redox potential in the plasma, and reflects the state of the antioxidant system in the cells. The normal mean value is 14. PWCs often have a value slightly more than half this amount, indicating a state of glutathione depletion and oxidative stress. This ratio has been found to increase during treatment of a partial methylation cycle block, but other types of treatment may be necessary to bring it to normal.*

    S-adenosymethionine (RBC): This is a measure of the concentration of S-adenosylmethionine (SAMe) in the red blood cells. The reference range is 221 to 256 micromoles per deciliter.

    SAMe is produced in the methylation cycle and is the main supplier of methyl (CH3) groups for a large number of methylation reactions in the body, including the methylation of DNA and the biosynthesis of creatine, carnitine, phosphatidylcholine, coenzyme Q10, melatonin and epinephrine. This measurement is made in the red blood cells because the level there reflects an average over a longer time and is less vulnerable to fluctuations than is the plasma level of SAMe.

    Most PWCs have values below the reference range, and treatment raises the value.* A low value for SAMe represents a low methylation capacity, and
    in CFS, it usually appears to result from an inhibition or partial block of the enzyme methionine synthase in the methylation cycle. Many of the abnormalities in CFS can be tied to lack of sufficient methylation capacity.

    S-adenosylhomocysteine (RBC): This is a measure of the
    concentration of S-adenosylhomocysteine (SAH) in the red blood cells. The reference range is 38.0 to 49.0 micromoles per deciliter.

    SAH is the product of the many methyltransferase reactions that utilize SAMe as a source of methyl groups. In CFS, its value ranges from below the reference range to above the reference range. Values appear to converge toward the reference range with treatment.

    Sum of SAM and SAH: When the sum of SAM and SAH is below about 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathionine beta synthase (CBS)
    enzyme, though this may not be true in every case. For those considering following the Yasko treatment program, this may be useful information.

    Ratio of SAM to SAH: A ratio less than about 4.5 represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity, because they affect the rates of the methyltransferase reactions.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. The reference range is 16.8 to 21.4 x 10(-8) molar.

    Adenosine is a product of the reaction that converts SAH to homocysteine. It is also exported to the plasma when mitochondria develop a low energy charge, so that ATP drops down to ADP, AMP, and eventually, adenosine. Adenosine in the plasma is normally broken down to inosine by the enzyme adenosine deaminase.

    In some PWCs adenosine is found to be high, in some it is low, and in some it is in the reference range. I don't yet understand what controls the adenosine level in these patients, and I suspect that there is more than one factor involved. In most PWCs who started with abnormal values, the adenosine level appears to be moving into the reference range with methylation cycle treatment, but more data are needed.

    5-CH3-THF: This is a measure of the concentration of 5L-methyl
    tetrahydrofolate in the blood plasma. The reference range is 8.4 to 72.6 nanomoles per liter.

    This form of folate is present in natural foods, and is normally the most abundant form of folate in the blood plasma. It is the form that serves as a reactant for the enzyme methionine synthase, and is thus the important form for the methylation cycle. It is also the only form of folate that normally can enter the brain. Its only known reactions are the methionine synthase reaction and reaction with the oxidant peroxynitrite.

    When there is a partial block in methionine synthase, the other forms of folate continue to be converted to 5L-CH3-THF by the so-called methyl trap mechanism. Some of the 5L-CH3-THF is broken down by reaction with peroxynitrite, which results from the condition of oxidative stress that is usually concomitant with glutathione depletion.

    Many PWCs have a low value of 5L-CH3-THF, consistent with a partial block in the methylation cycle. Most methylation treatment protocols include supplementation with 5L-CH3-THF, which is sold over-the-counter as Metafolin, FolaPro, or MethylMate B (trademarks), as well as the newer Quatrefolic (trademark) and in the prescription medical foods supplied by PamLab, including Deplin, CerefolinNAC and Metanx. There are some others on the market that include both racemic forms (5L and 5R) of this folate.

    When methylation treatment is used, the level of 5-CH3-THF rises in nearly every PWC. If the concentration of 5-CH3-THF is within the reference range, but either SAM or the ratio of SAM to SAH is below the reference values, it suggests that there is a partial methylation cycle block and that it is caused by inavailability of sufficient bioactive B12, rather than inavailability of sufficient folate. A urine organic acids panel will show elevated methylmalonate if there is a functional deficiency of B12. I have seen this combination frequently, and I think it demonstrates that the functional deficiency of B12 is the immediate root cause of most cases of partial methylation cycle block. Usually glutathione is low in these cases, which is consistent with such a functional deficiency. As the activity of the methylation cycle becomes more normal, the demand for 5-CH3-THF will likely increase, so including it in the treatment protocol, even if not initially low, will likely be beneficial.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. The reference range is 1.5 to 8.2 nanomoles per liter.

    This form of folate is involved in reactions to form purines, which form part of RNA and DNA as well as ATP. It is usually on the low side in PWCs, likely as a result of the methyl trap mechanism mentioned above. This deficiency is likely the reason for some elevation of mean corpuscular volume (MCV) and mean corpuscular hemoglobin (MCH) often seen in PWCs. This deficit may also impact replacement of cells lining the gut, as well as white blood cells.

    Rarely, 10-formyl-THF is found to be much higher than the normal reference range. If this is found, the patient should be examined for cancer, since cancer cells upregulate this form of folate in order to make purines more rapidly to support their rapid cell division.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma. The reference range is 1.2 to 11.7 nanomoles per liter.

    This form is not used directly as a substrate in one-carbon transfer reactions, but it can be converted into other forms of folate, and may serve as a buffer form of folate. Most but not all PWCs have a value on the low side. It is one of the
    supplements in some methylation protocols. It can be converted to 5L-CH3-THF in the body by a series of three reactions, one of which requires NADPH, and it may also help to supply other forms of folate to the cells until the methionine synthase reaction comes up to more normal activity.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. The reference range is 0.6 to 6.8 nanomoles per liter.

    This is the fundamental chemically reduced form of folate from which several other reduced folate forms are synthesized, and thus serves as the hub of the folate metabolism. THF is also a product of the methionine synthase reaction, and participates in the reaction that converts formiminoglutamate (figlu) into glutamate in the metabolism of histidine. If figlu is found to be elevated in a urine organic acids panel, it usually indicates that THF is low. In PWCs it is lower than the mean normal value of 3.7 nanomoles per liter in most but not all PWCs.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. The reference range is 8.9 to 24.6 nanomoles per liter.

    Folic acid is a synthetic form of folate, not found in nature. It is added to food grains in the U.S. and some other countries in order to lower the incidence of neural tube birth defects, including spina bifida. It is the oxidized form of folate, and therefore has a long shelf life and is the most common commercial folate supplement. It is normally converted into THF by two sequential reactions catalyzed by dihydrofolate reductase (DHFR), using NADPH as the reductant. However, some people are not able to carry out this reaction well for genetic reasons, and PWCs may be depleted in NADPH, so folic acid is not the best supplemental form of folate for these people.

    Low values suggest folic acid deficiency in the current diet. High values, especially in the presence of low values for THF, may be associated with inability to convert folic acid into reduced folate readily, such as because of a genetic polymorphism in the DHFR enzyme. They may also be due to high supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic acid in the whole blood. The reference range is 9.0 to 35.5 nanomoles per liter.

    See comments on 5-formyl-THF above. Whole blood folinic acid usually tracks with the plasma 5-formyl-THF concentration. They are the same substance.

    Folic acid (RBC): This is a measure of the concentration of folic acid in the red blood cells. The reference range is 400 to 1500 nanomoles per liter.

    The red blood cells import folic acid when they are initially being formed, but during most of their lifetime, they do not normally import, export, or use it. They simply serve as reservoirs for it, giving it up when they are broken down.

    Many PWCs have low values of this parameter. This can be caused by a low folic acid status in the diet over the previous few months, since the population of RBCs at any time has ages ranging from zero to about four months. However, in CFS it can also be caused by oxidative damage to the cell membranes, which allows folic acid to leak out of the cells. Dr. Audhya reports that treatment with omega-3 fatty acids has been found to raise this value over time in one cohort.

    If anyone finds errors in the above suggestions, I would appreciate being notified at richvank@aol.com.

    * Nathan, N., and Van Konynenburg, R.A., Treatment Study of Methylation Cycle Support in Patients with Chronic Fatigue Syndrome and Fibromyalgia, poster paper, 9th International IACFS/ME Conference, Reno, Nevada, March 12-15, 2009. (http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf)
  4. nanonug

    nanonug Senior Member

    Virginia, USA
    Get yourself tested for MTHFR mutations (C677T and A1298C), especially if you are planning on having children. Meanwhile, throw away any supplement that has folic acid in it. Supplements with methylfolate are the way to go.

    What made you start the vitamin B6 and folic acid? Were you trying to address any particular health issues?
  5. hixxy

    hixxy Senior Member

    This is very interesting. I'm yet to see a neurologist (waiting to get in), but I've had this same problem for about 1 1/2 years now. I had no idea what it's called though.

    Also this started after b6 supplementation (a long with the worst of my neurological problems) as well. I also developed severe dietary intolerance of glutamate almost over night.
    futuritycarpaccio likes this.
  6. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    Hi Mary Jane,
    I relate to your story and have been through something similar. Having seizures can be very scary, and doctors don't do well with atypical seizures, even neurologists.

    I have a guess about your situation based on my own experience. I can share details in private if you like, just message me. The summary is that I started having seizures suddenly on a long road trip. What happened over the next few years was a very bad and scary series of working with doctors, taking drugs I reacted to (one nearly killed me), and eventually giving up on traditional medicine and working with integrated/functional medicine doctors, one of whom had recovered from CFS himself (he probably saved my life).

    Anyway, my guess is that you reacted to the Folic Acid and not the B6. If you study folic acid, seizures are a possible side-effect for epileptics. What type of diagnosis do you have? I was given a 'partial-complex epilepsy' diagnosis. But as of now, many years later, I don't have seizures anymore and believe the epilepsy is latent and the seizures were being driven by some type of methylation cycle block as Rich has explained above. So in your case the task would be to figure out what and how your metabolism is being altered. The tests Rich mentioned might help.

    One other point, with complicated metabolic problems like CFS patients have, taking one or two vitamins can overdrive an already weak system to the point that something 'breaks'. I do much better by taking a LOT of nutrients, I follow both Rich's and Fred's protocols here on the forum, plus add a few additional items that have been important in my particular case and also support methylation.

    Solving this type of situation takes time, there will not likely be a quick fix like many other medical conditions, where you can just take a pill. I think it is important to slow down, particularly with doctors, because they tend to panic when a patient does not respond to drug after drug and some doctors then start using high-risk treatments that can be VERY bad for CFS patients.

    Hang in there, it does get better, but you have to work through the complexities of this situation.
  7. Ema

    Ema Senior Member

    Midwest USA
    Hi Mary Jane and welcome...

    Many of those symptoms sound like untreated hypothyroidism...with a TSH of over 5, I'm surprised that even a traditional endocrinologist wouldn't have diagnosed you with hypothyroidism. Did you ever do a trial of thyroid meds? Did you have FT3/FT4/RT3 tested along with the TSH? Seizures, tinnitus, dizziness, eye spots, etc etc all go along with your elevated TSH and a diagnosis of hypothyroidism. Were your last thyroid tests done in 2011? If so, I would re-run them. Getting thyroid right will also make all the difference in the world with getting pregnant once the time is right and these others issues are sorted.

    I'm confused about your iron level...serum iron is usually considered good at 100-110 in a traditional range of 35-155. What range was given for your test?

    Do you know which lab did your Lyme test? I agree that that should also be looked at more closely along with the methylation panel suggested.

    I would also make sure to do a saliva cortisol test in your position because one needs to have supported adrenals in order to tolerate thyroid treatment. Adrenal dysfunction often goes right along with thyroid problems and needs to be treated first.

    Are you supping Vit D now?

    Try not to be scared! It sounds like there is lots of room for improvement and we can help you chart a path to getting the best treatment from your doctor.
  8. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I would like to add something about folic acid. Its been shown in recent years that unmetabolized folic acid accumulates. This means it can cause problems with normal folate metabolism. Its important to know what forms of folate are in the blood. A recent study showed four out of five post-menopausal women have elevated folic acid. It gets worse with age. As Rich pointed out we need NADPH to metabolize it. Even with no genetic issues in folate metabolism many with CFS or ME or any other disorder that lowers NADPH could be vulnerable to elevated folic acid, particularly if they take it in supplements or eat a lot of cereal or bread.

    This elevated folic acid is tentatively linked to neurological and immunological symptoms, including dementia and NK cell dysfunction. Its only been a few years since this problem was recognized, but its worth checking out if you are running lots of other tests.

    I also agree that you need your iron status checked. High iron can be even more dangerous than low iron.

    Bye, Alex
  9. rlc

    rlc Senior Member

    Hi Mary Jane, interesting reaction to Folic acid and B6, which may help you get a correct diagnosis, provided that the seizure wasnt just a coincidence, which is unlikely.

    B6 and folic acid are not to be taken by people with certain conditions because it will make them worse, this site http://www.ksl.stanford.edu/people/....webmd.com_content_dmk_dmk_article_58947.html

    Says Vitamin B6 (pyridoxine)

    Diabetics should use B6 only under the supervision of a skilled practitioner, since it may affect blood sugar levels. Vitamin B6 may affect the actions of anticonvulsant medications, so epileptics should take it only under skilled supervison.

    Have you been checked for diabetes?

    Folic Acid

    Folic acid supplements may reduce the effectiveness of methotrexate (Rheumatrex), colchicine (Colbenemeid), trimethoprim (Trimpex, Bactrim, Septra), pyrimethamine (Daraprim, Fansidor), trimetrexate (Neutrexin) and phenytoin (Dilantin). If you're taking any of those drugs, consult your physician about using folic acid.4 High doses of folic acid may increase seizure activity in epileptics.5 Folic acid can mask symptoms of vitamin B12 deficiency (pernicious anemia).

    Possible Adverse Effects
    People at risk for pernicious anemia should use folic acid supplements only under medical supervision. Risk factors include a family history of the condition, as well as some autoimmune endocrine diseases such as type 1 diabetes, hypoparathyroidism, Addison's disease, hypopituitarism, testicular dysfunction, Graves disease, chronic thyroiditis, myasthenia gravis, secondary amenorrhea, vitiligo, and candidiasis.

    Again diabetes comes up, have you been tested for Addisons? because that would explain a lot of your symptoms and High TSH, I dont see tests for this amongst the ones youve had, cortisol, serum ACTH and Aldosterone should be tested, if there is any remaining doubt about it then a ACTH stimulation test should be done, there is several thyroid conditions on this list, have you been given a reason why your TSH was so high because it shouldnt be, modern research says a healthy TSH level should be under 2.5, have you received treatment for hypothyroidism? Of the conditions on these lists, Diabetes, hypoparathyroidism, Addisons, hypopituitarism, Graves disease, thyroditis and myasthenia Gravis can cause seizures, and taking B6 and/or folic acid which you are not supposed to take if you have any one of these conditions may have aggravated one of these underlying conditions and caused the seizure, All of these conditions produce symptoms similar to what you are describing and are often misdiagnosed as CFS.

    In my opinion if there are any diseases on these lists that react badly to B6 and/or folic acid that havent been ruled out, then they are the most likely cause of your health problems and need to be investigated in case you have one of these.

    Your B12 levels are high which rules out B12 deficiency and Pernicious anaemia .

    You say you had low vitamin D has this been treated, vitamin D deficiency will only be making things worse for you if it hasnt been treated, however hypoparathyroidism has to be ruled out before treatment as vitamin D makes it worse, I see you have had calcium tested but have you had PTH (parathyroid hormone tested) as well?

    Although you have told your doctors that taking B6 and folic acid was what put you in hospital, they seem to have forgotten this and that they should therefore be looking for conditions that are made worse by taking B6 and folic acid, and that they should be looking for something that explains all your symptoms. Instead they have been looking at things like celiac which is not made worse by taking B6 or folic acid, and focusing on things like epilepsy that doesnt explain all your symptoms. Hopefully there is something on these lists that your doctors have missed and you will be able to get them to investigate it and find your correct diagnosis. These lists are not necessary 100% complete if you do Google searches for B6 and folic acid contradictions you may find some other conditions that are not on these lists that may need to be investigated.

    Hope you find the answer soon! Be very careful taking any vitamins and minerals until you have a correct diagnosis a lot of them are very dangerous when people have certain undiagnosed medical conditions!

    All the best
  10. Googsta

    Googsta Doing Well

    My absolute sympathy for anyone who has had seizures, I have had three requiring hospitalisation & they are terrifying.
    Where you concious during the seizures?
    I am a similar age & no family history.

    I had 3 seizures, one in May 2010, and two more within 30 hours of each other that July.
    I have had extensive testing for Epilepsy but to no avail. I had seizures when I was both taking & not taking Anti-epileptics.
    I was at around level 6 activity when they occurred.
    I was not taking any supplements etc
    My Neurologist say's they have no idea why people have non-epileptic seizures.

    Regarding your MRI & other tests that were considered 'normal' get your own copies. Doctors do not always inform patients of slight abnormalities including lesions & bright spots etc.

    Please note that many epilepsy meds can cause symptoms such as severe double vision (not saying that's what is causing yours ;) ). I discontinued my meds as I haven't had anymore seizures, I do sometimes get 'auras' though. I have a button by my bed just in case so I can call for my husband, it helps me feel safer.

    The term Myoclonic jerks is correct. They are considered completely normal by Neurologists. Particularly if they occur as you fall asleep. I had them during my week-long EEG & they were reported normal.
    My opinion is that may be true, but the frequency & severity of the jerks in M.E patients is often ignored & should be addressed.

    I think trying Rich's protocol would be an excellent idea. Hope you find some answers soon!
  11. Mary Jane

    Mary Jane

    Hi Sushi,

    I haven't checked for blood pressure or pulse changes while engaged in activities. Shortly after having the first seizure, I did experience fatigue. I slept longer than normal, was just tired all the time, etc. I don't really feel that way now, but sometimes I do, and I don't know if it's normal or related to everything else.

    And I have not checked for viruses or the gut/stool panel. I thank you so much for your information, your welcome and your response!
  12. Mary Jane

    Mary Jane

  13. Mary Jane

    Mary Jane


    Hi. After the folic acid in 2010, I got rid of a lot of things. I was freaked out.

    I took the B6 because of tingling and numbness. It was recommended by my doctor years ago for those problems, and since they returned, I picked it up when I picked up the folic adic. The folic acid was recommended by my OB/GYN and my GP because we wanted to start a family, but I stopped that once I had the seizure and other symptoms.:sad:

    Thanks for the test recs!
  14. Mary Jane

    Mary Jane


    My myoclonic jerks got worse after the seizure. They are a normal response to have like when you nod off at school, home, a boring meeting, etc. But I've never had such intense jerks, like I do now. And the frequency has increased as well.

    I hope you get your answers as well.
  15. Mary Jane

    Mary Jane


    I'm glad to have found someone with really similar issues; not that I want either of us to be sick, but it's good to know that someone can relate and not think I'm crazy like the doctors do. I always mention the folic acid and get ignored.

    I was diagnosed with epilepsy--focal seizures in the left temporal lobe with no known cause. I read that folic acid lowers the thresehold for seizures, even if there is no history of seizures.

    So far, the only med I'm on is the Lamictal--as far as treating the symptoms go; not including anything I was on previously. Oh, and I took predinisone to get rid of the swelling for the glands, but that was only about two weeks. I told all of the docs that they can't just treat my symptoms because I'm not taking medication unless it's necessary; like it is for the seizures. I tried to stop taking them in January while I was monitored in the neurology unit in the hospital, but I had a partial seizure, so I'm still on the meds.

    I will definitely PM you tonight. Thanks. :hug:
  16. Mary Jane

    Mary Jane

    Hi. As for the thyroid, my endocrinologist tested me again. Sorry, I should have clarified. The test I listed was done by my primary doctor, who then sent me to the endocrinologist. He did say I had hypothyroidism and tested me again (last summer), but this time, the number went down in December. So, now it's about 3.0, I think. I can't find that result since I have so many papers on my desk right now. He does want to check me every so often to be sure it stays around the same levels. And this doctor specializes in thyroid, so that's why I went to him because I thought I had Hashimoto's Encephalopathy.

    My iron level (Iron Bind. Cap.-TIBC) was 235, and the range for that lab was 250-450. The blood serum level was 50, and the range for that was 35-155. I mentioned the TIBC since the lab said it was low.

    I don't know which lab performed the Lyme test, but I'm going to try Rich's recommedation and get that test.

    I'm taking vitamin D, and that level of 11 has gone up to 35. So, I'm getting there.

    Thanks for the care and concern.
  17. Mary Jane

    Mary Jane


    Thanks for your input. My iron was low, but my hematologist said it's in a good range and he checked my complete iron levels.

    I've read lots about folic acid since my problems started. It's as if doctors don't want to believe that it can be harmful.
  18. Mary Jane

    Mary Jane


    Hi. I've been checked for diagnosed for diabetes several times, and I'm in a perfect range.

    I haven't had my PTH tested. I didn't know I had a vitamin D deficiency until months after the seizures, while all kinds of tests were being performed. I am taking vitamin D.

    I have been telling doctors about the folic acid and B6, to no avail. Only my primary doc acknowledges it. So, that's why I've been researching since I first got sick and finally made it here. Thanks for the article.

    I have put the supplements down; all except Vitamin D. I'll check for the PTH asap. Thanks for the information!
  19. Mary Jane

    Mary Jane


    Hi. I was diagnosed with epilepsy, but of course they couldn't explain my other problems. I have copies of all of my tests. I have copies of all 3 MRI's, EEGS, labs, etc.

    When I tried to stop my meds during an observation--for a week like yours--I had a partial seizure, and they put me back on the meds. I don't have them with the meds. Well, I have "auras" like you described. Scary.

    My myoclonic jerks are more frequent and rougher than before I had those seizures.

    And I'm listening to Rich's advice, and the suggestions of the others too. Thanks for chiming in.
  20. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    IF you are also hyperflexable in places... look into Ehlers-Danlos Syndrome http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome to make sure you dont have a kind of that causing the above symptom. EDS people often have popping joints and pain in joints, it can also cause other symptoms too depending on what kind someone has.

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