1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
Discuss the article on the Forums.

23andme & Chronic insomnia and family history of psychiatric/CNS disorders

Discussion in 'Genetic Testing and SNPs' started by xptriado, Feb 12, 2014.

  1. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    Hi everyone,

    I am on the verge of ordering a 23andme kit.
    I live in Europe and the damn thing will cost me around 150€...which is quite a lot adding to all the money I put into my chronic insomnia issues recently.

    Long story short:

    - Been suffering from insomnia (initial and late, as well as unrefreshing sleep) which started with a stress episode at 23years old - I'm now 30. I know people who passed similar things but they recovered and are normal now. Coincidentally or not, one year after having taken finasteride for one month and quit due to gyno which reversed..for the most part.

    - Insomnia is worse during the working days, better during weekends, much much better on holidays and a few times I achieved remission to around 80-100% of my former non-insomniac self but never while under stressful situations or while working..

    - If I rest more I start sleeping better, it's a cycle. And I seem to get better overral with more and more rest but for that I need to quit my job which I am considering at the moment, and I 've done in the past too.

    - Feeling more loved and wanted makes it better as sleeping with someone next to you (independently of having or not sexual relations)

    - Living abroad makes it far worse.

    - Stressful events make it far worse.

    - Around 5 epilepsy crisis throught my life and been medicated two years pre-puberty with phenobarbital as I was diagnosed with epilepsy. Since 18 years old I don't have a fit. Coincidentally the first fits happened the night after I took a medication.

    - Mother had a few epilepsy crysis. Sister once had a weird numbing feeling in leg and had to be taken to the hospital. One uncle from mother side also had fits (but none was medicated like me), his brother had chronic insomnia just like mine and confessed me before he went into colonial war he suffered already from depression (from age 14 until 45) and got worse there and led to PTSD - now he is fine,sleeping great and happy; Grandma from Motherside is a nervous person too; Daughter of PTSD uncle was medicated 5 years for anxiety with Lexapro as she couldn't even leave the house (now she is fine). All in all the family is very united and happy but we suffer from what seems to be a TENDENCY towards anxiety, insomnia and depression.

    - Twitchy eye lids.

    - TCA's, Tetracyclics, 1st generation anti-histamines lead to Sleep Myoclonus. Clonazepam handles it. Doctor thinks it might be closely related to Periodic Limb Movement Disorder but I don't want to take dopamine agonists.

    - Tendency towards depression...but it's manageable through sports and surrounding with people.


    I am on the verge of ordering 23 and me kit but:
    - I would like to know if you think it makes sense to order it seeing my history...
    - I am afraid to become obsessed about diseases once I run my genes through the analyzer. Is it possible to analyze only MTHFR and COMT genes and skip everything else? I could care less at the moment if I have a tendency towards diseases other than MTHFR, COMT and related, and I don't want to open a can of worms. This issue was raised by a friend of mine who is a PhD in biology and he said he would only do the specific tests for MTHFR, COMT and related and nothing else...

    Also:
    - Is there anyone else around here with a similar problem?


    Thank you so much for all your help.
    Last edited: Feb 12, 2014
    merylg likes this.
  2. minkeygirl

    minkeygirl Senior Member

    Messages:
    1,212
    Likes:
    692
    Left Coast
    I'm like you. I have a tendency to worry about everything. I had a zit inside my nostril and I swore it was a tumor! LOL.

    When I got my 23andMe results, I didn't look at anything else and only used the MTHFR stuff. The findings for serious diseases are locked so you have to really want to see them.
  3. Snowdrop

    Snowdrop Senior Member

    Messages:
    270
    Likes:
    347
    Toronto
    @xptriado

    Hello

    If it were me I would order the kit. I say that not having ordered yet myself but I hope to soon.
    I do have a similar history for myself and my family.
    I started being medicated with phenobarbitol and dilantin when I was pre school age and stopped when I was in my teens.
    My family is riddled with anxiety and other autoimmune type illnesses. I have children and they have some general anxiety as well.
    My condition has deteriorated every time I was under a great deal of stress. I now have had many neurological issues and qualify for a ME diagnosis and fibromyalgia.

    I don't have many solutions as I should have started trying to solve this sooner but did not.
    There are resources here I didn't have then and it's good you found this site and are looking for help.

    Although I haven't done much I can say that I received benefit from Vitamin D3 Starting with a dose of 4 or 5 tablets for a week or so and then lowering the dose as I felt benefits. Although the benefits of this were cognitive mostly

    Also Magnesium. The benefits of this were physical functioning, an ability to relax. Start low go slow. I use a bisglycinate formula with Taurine. I have also used magnesium in footbaths. You can get too much magnesium so read up and keep track of what you do. Writing things down and remarking on how I feel it has helped sort things too.

    Now that I have gone down the rabbit hole into more neurological disfunction I found reducing/eliminating gluten helpful. I am finding the Methyl protocol helpful also. These things I've tried without benefit of gene analysis but I still think it would be useful.

    I have no solutions for anxiety. I wish I did.

    I hope for you that you find something helpful for your situation. don't despair. Don't give up. There are some things that you can do. You already know that rest is good so maybe some meditation relaxation exercises could be useful too.

    Good luck to you in your search for answers,
    SD
    merylg and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,763
    Likes:
    5,087
    Amersfoort, Netherlands
    Your problems almost certainly are not caused by MTHFR or other methylation problems, hence I'd think it's a bit of a waste to buy the kit if you only check for those. It'd be cheaper to just (carefully) try a basic methylation protocol to see if anything happens.

    I don't think 23andMe is listing their mildly increased risk factors anymore, so there's no danger in getting caught up in those. And if you do happen to see something, it's important to keep in mind that they're still representing tiny risks - such as going from a 1 in 10,000 chance of developing a disease in the general population, to a 2 in 10,000 chance with a certain SNP.

    But there are also known pathogenic SNPs which actually cause disease, instead of just slightly increasing the risk. Knowing about those can be extremely useful, especially in a case like yours where a genetic component is very likely: it can assist in finding an accurate diagnosis and useful treatment.
    merylg and SOC like this.
  5. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    @Snowdrop do you feel like yuo got diagnosed ME and fibromyalgia because you ignored your health problems before? do you feel it would have never happened if you treated it earlier?

    @Valentijn , why do you so quickly discard the MTHFR? Thanks
  6. Snowdrop

    Snowdrop Senior Member

    Messages:
    270
    Likes:
    347
    Toronto
    It's a good question of course and I'll answer but I'm guarded as to how accurate I can be.
    Because of the medication I was on (the Phenobarbitol) and because of my personal brain wiring and chaotic family history I have a very disorganised thought process. Although I've had decades of trying to correct for that. I also have an abysmal memory.

    This is relevant because many here understand ME as attributable to an acute illness usually viral.
    I was sick as a young adult with pneumonia and I remember being bedbound for several months (not with Pn and I can't remember if before or after the Pn) I thought it was depression. I had no ability to get up and do anything Although I wanted to. I is really hard to put the pieces together.

    I tend to think now that it doesn't matter as to the how I got here so much for me.

    But for you, I think starting now to grapple with this may help keep you from the worst harm. Never underestimate rest. Including mental/emotional rest. If I were where you are now I would follow epilepsy research as well as research here into neurological problems. You may be doing this already. Not all research is equal and this is a good site to discover issues regarding that as well.

    To answer your question more directly though, I'd have to say yes my initial neurology lead to this. Many with epilepsy don't get ME so I'm not suggesting that. But perhaps it's a matter of understanding epilepsy better and types of/reasons for seizure activity.
    Genetics is of course relevant.

    Also as time went on after childhood I experienced more symptoms than epilepsy. I had PMS from hell, then migraines, reynauds syndrome and insomnia. These were before/by the time I was in my early thirties. Also, you might want to research POTS/OI (orthostatic intolerance) I've had it to some degree for decades but had no idea until it got very bad.

    mental illness issues are always interesting when other associated and poorly understood illnesses are involved.
    That is to say that I thought I was crazy early on and it turns out I was very much mistaken. And I have raised two very psychologically healthy children (except some anxiety). I expect that some family 'mental health issues' aren't (mental health issues).

    SD
    merylg likes this.
  7. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    I don't think I have orthostatic intolerance.
    But when you said that, I reminded I do seem to have something weird: sudden weather changes affect my mood, even if I'm not visually aware of the change. It's like I sense it. I think it may have to do with pressure drops.

    I am giving again more importance to rest, because like you say, it shouldn't be underestimated. I don't want to end up with some sort of autoimmune disease because of this. life is too much of a gift to be wasted because you got some chronic disease from not having followed the recommendations.
    I have already talked with my employer and I will probably be quitting my job soon, once again for the same reasons as
    before. I feel sad that I can't deal with this problem... not even with meds.

    I did this 2 other times in my life in the past 6 years. i can't hold a job. or i can't hold this kind of job (becuase it's always been the same kind - programming). 1st time i did it i achieved remission of my symptoms for a long time, almost one year. Second time i did it I got worse and was medicated for insomnia. And 3rd time? let's see.

    I have done and am doing extensive research. I am buying some books in biochemistry and molecular biology too because along the way I found I like very much this subject.

    Some things start to make sense, but it's a slow, painful and expensive process:
    - I managed to understand that my sleep myoclonus, are activated by blockade of Muscarinic receptor and blockade of receptor binding of acethylcholine was involved in it. Which was in line with the observatino made by a doctor that I may have PLMD:
    - I also managed to pick the receptor that mirtazapine was blocking 5HT2A Serotonin receptor, which made me sleep better...at the same time it gave me sleep myoclonus for the reasons above mentioned...
    - So with these two analysis I went to the doctor and asked for Trazodone, which I had tried before in a higher dosage and gave me side effects, but I tried it again at 12,5-25mg it helps me withouth any sides. It's not a magic bullet though.

    I though my problem lied in gaba/glutamate imbalance, favouring glutamate, and wanted to try the Pregabalin I have around which I asked specifically to my doctor too after researching, until I found out about MTHFR and COMT, and I now want to order the 23andme. Maybe it will give me more clues to what's happening with me and my family.

    The doctor who I asked pregabalin too is one of the best neurologists in my coutnry, specialized in sleep and epilepsy. I talked about my problem with him for nearly 50minutes and he was listening all the time, answering my questions and discussing with me...in the end he told me I have a very advanced level of knowledge in sleep medicine. I have been to many docs, tried lots of medications, and this guy even told me this, which leads me to think I'm barking at the wrong doors: conventional medicine has no solution for me at the moment.

    I am trying to put pieces together and I thought the MTHFR would made sense, and maybe also a CFS diagnosis, initial stages, would make sense... so i joined this website.
    Last edited: Feb 12, 2014
    merylg likes this.
  8. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    by the way, I had pneumonia too has a child.
    Congratulations on your healthy children :)
  9. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,396
    Likes:
    4,280
    USA
    What makes you think CFS makes sense given your symptoms? CFS or ME/CFS is not a good diagnosis to have in your medical record in many places, so you don't want to go down that path without carefully eliminating the many other possibilities.
    Valentijn likes this.
  10. merylg

    merylg Senior Member

    Messages:
    741
    Likes:
    447
    Sydney, NSW, Australia
    I'm not sure of the cost of this but you could go down the track of doing an epilepsy screen panel, a Mitochondrial genome test & a test of the Nuclear DNA that affects Mitochondria. You may find one or two things you can address in some way eg a deficiency of CoQ10 or one or more of many other metabolic errors.

    http://www.courtagen.com/test-menu-genetic-test-episeek.htm

    The fact sheets there on epilepsy are interesting & the links are on the left for the Mitochondrial tests. This whole area is becoming highly competitive & cheaper. Need to evaluate if whole exome or whole genome testing would be worthwhile instead.
    Last edited: Feb 12, 2014
    Valentijn likes this.
  11. Critterina

    Critterina Senior Member

    Messages:
    480
    Likes:
    167
    Arizona, USA
    Hi @xptriado ,

    Welcome here. I'm sorry for all your issues, but I'm sure that with determination and persistence, you'll make progress. Lots of people here will offer their opinions - sometimes contradictory. But they can clue you in to different research that can really help. I find that I can only go so far and my brain needs a break, but then just pick it up again in a day or two, and eventually you'll see the pieces start to come together. Me, I don't have ME or CFS, but my life is much better and I'm going to get the medical attention I need because of people who have helped me on this forum. I have histamine intolerance and adrenal insufficiency (panhypopituitarism, I suspect,) from a tumor on my pituitary. I would certainly not have a diagnosis, been able to avoid emergency rooms, and have the referrals I need without this help. Just stick with it.

    One of the people I seem to almost always agree with is @Valentijn , so having read your post and formed my own opinion, I was really surprised that she didn't think you had methylation problems. My first reaction was that I would put money on you having MTHFR A1298C, probably +/+. The second reaction was that the OCD tendencies may be supported by the genetic tendency toward it, also possibly MTHFR A1298C. And that tryptophan was never going to work for you if you didn't also supplement with methylfolate, (another A1298C thought). And I wonder what a saliva cortisol test would show, regarding your insomnia and the relationship with stress. Have you ever tried phosphotidyl serine supplements in the morning? Did they help? You talked about Pregabalin; did you ever just try OTC GABA? You have too much going on for me to begin to understand or make recommendations about what to do. Please don't take my comments out of context and just go take some methylfolate, tryptophan, GABA and PS just because of my stray thoughts.

    Ok, so having said that, the rest of Valentijn's post was spot on. So, my vote is to do the test. Run the methylation part of Genetic Genie when you get the results so you only look at that, and when you're ready, run it through Valentijn's rare gene program. Maybe try a methylation protocol meanwhile; it's not that huge an investment. The big question would be which - Rich's or Freddd's. If you think you're COMT, maybe start with Rich's. If you have ever tried methylB12 and it was OK, then maybe Freddd's.

    The fact that reduction in stress helps you - to me that's a big clue that some of this can be fixed. And good for you for making rest important! Best wishes!
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,763
    Likes:
    5,087
    Amersfoort, Netherlands
    I wouldn't completely disregard it - treating any methylation problems can certainly be helpful. But I think it's unlikely that a simple methylation problem would cause so many serious symptoms in yourself and your family members, such as epilepsy. Problems with eye muscles are also involved in various genetic disorders, but don't particularly sound like a typical B12 or folate issue.

    It's also unlikely that a typical methylation problem would affect so many people in one family, since the yasko/heartfixer type SNPs can often be compensated for by diet. Hence if one of those relatives is a big veggie eater, there probably wouldn't be a noticable folate issue. And all of your relatives with related problems who you have listed come from one side of the family, which again is an indicator of a more significant genetic component.

    It's also interesting that all but one of the people you've listed (uncle's daughter) would have exactly the same mitochondrial DNA: mutations in mitochondrial DNA are responsible for various mitochondrial diseases which might be capable of causing your symptoms.
  13. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    @SOC Well let me rephrase what I said: I'm afraid this what I have could in the future lead to something like CFS, since I'm constantly tired, even if I sleep enough hours like I do on the weekend.

    I checked and I already have some of the symptoms on the list:

    • inability to sleep properly
    • wired but tired fatigue
    • unrefreshing sleep
    • intolerance of weather extremes - could this be the sensitivity of sudden weather changes I was talking about?
    • anxiety
    • hypersensitivity to sound
    • difficulty making decisions
    • myofascial trigger points
    • brain fog
    • irritability
    • fatigued
    • muscle twitching

    Why do you say it's "is not a good diagnosis to have in your medical record in many places" ?

    @Critterina
    I'm glad you made lots of health related improvements. It also gives me hope. I also think something will show up on MTHFR and related things.

    It's funny you mentioned OCD even if I didnt explicitly mention it. I always thought I had not full blown OCD but a tendency towards it. I am writing some more data that I didn't mention.

    I am actually already trying since 5 days a MTHFR protocol: I bought methylcobalamin, metafolin and p5p. I seem to get along with the metafolin and p5p but I'm not sure of the methylcobalamin.... seems to get me more fatigued and anxious, but could be my impression. So yesterday I took p5p after methylcobalamin and it seemed to take away a bit of the fatigue and anxiousness.

    I haven't tried GABA as I read it doesn't cross BBB. I was more into trying nicotinoyl-GABA (picamilon).

    I think the tryptophan slightly helped my sleep. But if I took it during the day I would be a bit spaced out.

    The phosphatidilserine is something I always wanted to try but I haven't yet. I will eventually buy it. What about phospharilated serine?

    The cortisol test is also something I want to do. I read once in the morning ACTH and it was 17, [range 10-60]..so not very high. I have always thought I had low cortisol but I'm wondering if it's in fact, not the opposite.

    Indeed the stress thing is a big clue and I am willing to put money (150€ to get the test done) on that I have the 1298, just by looking at this chart. I think I'm homozygous.
    There's no history of heart disease though so maybe not 677.

    @Valentijn
    I think we have a very good diet. I wouldn't say it's immaculate but it's very good. We are from a small town in Portugal, meaning we only eat fresh fish and fresh veggies, as well as many times eating meat that is raised in the local rural areas. We all eat lots of vegetable as part of the traditional food style and because in fact we like veggies.
    That being said I identified that there's also some excesses in my country's nutritional culture. For once we eat too much sugar..so now since 3 months I have substantially reduced sugar: I think I may have eaten 2 cake pieces in the last month...I have 100% eliminated sodas and I honestly can't drink coca-cola anymore, I tried it...it's just too sweet!!
    There's also some other problems since many people in portugal have high cholesterol I think, and also high blood pressure (which many times are related and my mom suffers from both).
    My cholesterol was intermediate-risk, at 218, and I just lowered it to acceptable levels by cutting down the sugar and intaking flax seed oil and eating hemp seeds..lowered from 218 to 195. I have to get it retested though..that was 1,5months ago.

    Could you give me a bit more info on this? It's the first time I hear about mitochondrial diseases.
    Also, why do you say "all but one"? I think we pretty much all share common ground for neurological diseases, in my family, on my mom's side.


    Some more data:

    For now I take:
    25mg Trazodone at night
    1g VitC
    800mg Metafolin
    50mg P5P
    75mg zinc
    I am trying the methylcobalamin but I think I'll drop it.
    I have 5000IU D3 to try at home.

    When OCD was mentioned I remembered:
    • I have tendency to ruminate on situations that worry me, especially if I'm not sleeping properly for a few days. It's difficult to move away my thoughts. In fact, this I think was what triggered my insomnia in the first place.
    • I bite the skin of inside of my lips since I was a child. Only when on a year of mirtazapine+clonazepam this has disappeared. I tried many times before to stop it, to no avail, it seems an automatic, unconscious reaction that I can only stop when I'm focused on stopping it.
    • I move my leg a lot while sitting down, like when you have the urge to urinate...but withouth having the urge to urinate :) I can't explain it any better,sorry
    • - I find myself repeating movements. It's much better now, I learned to handle it and eliminate it around to 80-90%, but when I was a kid I would pick up a glass, then put it back on the table, then pick it up again, then put it back..etc etc..
    • I over analyze many situations, especially emotional ones. Good thing is, at some point I manage to step out of the over analysis...but it may take one full day.

    More about family:
    • My uncle who also had fits, seems to have a tendency to other neurological diseases: he buys and buys stuff, which he doesn't use, and when you get in his bedroom everything is disorganized. Its like he has the WORLD inside and he knows it, and he recognizes everything is disorganized and pilled up...yet he does nothing to fix it. He's 50years old and lives with my grandma. Only since a couple years ago I have seen him with a girl. I hope it's not too late for him. Attention: this is unrelated to my uncle's looks, he's always been and still is (though less) good looking, I just never had seen him with a girl...I think I am following his footsteps, and it's because I'm constantly fatigued to go out and meet people (which I love to do, by the way)
    • My grandma is putting everything into plastic bags and she's a keeper. You can't throw ANY of her things away...but ok, my grandma is 91...
    Last edited: Feb 13, 2014
    merylg likes this.
  14. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    @merylg I missed your post somehow. Now it makes sense why @Valentijn was speaking about DNA and mitchondrias. I will have a look at that once I have time today!!:)
    merylg likes this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,763
    Likes:
    5,087
    Amersfoort, Netherlands
    A high veggie diet would likely compensate completely for any problematic MTHFR and related issues. At least, every study I've read which looks at disease risk factor associated with those SNPs finds that the extra risk disappears if the patients eat a lot of veggies or supplement folate.
    http://en.wikipedia.org/wiki/Mitochondrial_disease has a list, with links to the descriptions. But both epilepsy and eye muscle issues are a bit of a common theme in those, as well as various neurological and muscular/pain issues.
    Mitochondrial DNA is passed from mother to child. Hence you, your mother, your maternal grandmother, your siblings, your maternal aunts and uncles, and your maternal aunts' children would all have identical mitochondrial DNA. But your uncle's child would get her mitochondrial DNA from her mother, not from the same mother/grandmother that everyone else is getting it from.
  16. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    Ok, I understand now.

    Well, I can only relate to:
    • Delayed growth but not poor growth: I was the person who grew up the latest from all my friends. At 17-18 years old I was still growing taller. I ended up being taller than most my friends who grew up earlier until 14years old or so...
    • The uncle who had PTSD is short...so maybe there can be some poor growth there.
    • Grandma definetely has beginnings of dementia...but then again, she's 91!!
    • visual problems: mom and one of the uncles wear contact lenses since very early age, uncle with ptsd and dad wear glasses for reading, just recently. My grandma had cataracts but they have been removed. I should be wearing glasses too. But honestly this is a very common symptom and i don't think it should be used to screen for something.
    • Neurological problems: well..most definetely lol
    • hearing problems: I do have tinnitus since at least 11years old...but it's very low-mild...doesn't bother me...it seems to either have started or got worse with phenobarbital because i remember telling my mom to disconnect the fridge because it was making a zoom-zoom noise, to which she would reply that it was already disconnected...
    • autonomic dysfunction: I don't know wether or not the epilepsy crisis i had could fit here but i don't think so...

    I definitely don't relate to:
    • No heart,liver or kidney disease in the family...that I know of..I need to double check it with my mother..no respiratory disorders
    • loss of muscle coordination, muscle weakness, heart disease, liver disease, kidney disease, gastrointestinal disorders, respiratory disorders, autonomic dysfunction
    • Learning disabilites: this I am sure no one in my family has because everyone has a very high level of cultural knowledge, my uncle with ptsd was a teacher and was a guitar player in a covers band, i'm an engineer, the other uncle is also very smart, my mom, grandma and grandpa ran their own business...we seem to share though that we all read A LOT...when I was a kid i used to be able to play alone and have fun...but i also enjoyed company of others. but i had lots of imagination and i was very interested in specific subjects like mithology, dinossaurs and space...later i focused all the interest in computers, from a very early age. but i had friends, so if it was autism, it was very light autism..


    Could mutations related to mitochondrial DNA damage show up in my genetic results from 23andme?

    @merylg that website indeed looks very interesting. do you know if 23andme also analyses the genes from that test? i can't imagine a genetic test cheaper than 99$ so i'm assuming those are a whole lot more expensive
    Last edited: Feb 13, 2014
    merylg likes this.
  17. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    I was talking with my mother on the phone.. I'm really into this.

    So, more genealogical info on my mom's side:
    • Grandma had 1 sister and 2 brothers.
    • Sister died as a child. In portugal a lot of children died at that time, it was fairly common...only in the past 3-4 decades we lowered the infantile death rate. So this isn't helpful data.
    • One brother emigrated to Australia and is already deceased. He was very old when he died >90years old and was not any sort of vascular accident. He was a happy, young in the head, person, who loved to write and cite poems at the kitchen table, I remember him doing this very well. He had two children, a couple. His boy, died of cancer. They both had kids and their kids, I know them personally, are healthy physically and mentally. This means there is not heart related, kidney or liver disease on the side of the family that was generated from a man (my grandma's brother).
    • The other brother died of some circulation problems and he was a bit crazy in the head...my mom didn't explain so well but turns out he had meningitis when he was young (18years old) and he got crazy since then. He also didn't have any kids. So maybe he's not useful data either.
    • My grandpa died of cerebral vascular accident.
    • My PTSD uncle's daughter is very fit and healthy, except for the anxiety issue she had, which seems to be cured now.
    @merylg and @Valentijn , you may not be too far off with the mitochondrial disease.
    Last edited: Feb 13, 2014
    merylg and Valentijn like this.
  18. Snowdrop

    Snowdrop Senior Member

    Messages:
    270
    Likes:
    347
    Toronto
    I wouldn't rush to conclude anything. You could have a look at this link for mito disease:
    http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7929671.

    You can eliminate many of the types straight off because they are fatal in childhood or have mental retardation as a symptom. There are others. The good thing is they give a list of genetic markers for mito mutations relevant to the disorder.

    When I came to this site I realised that my symptoms (at least some of them) could be explained by other similar illnesses I also became aware that I might have discreet illnesses that could be thought of as co-morbid conditions.

    It can be complicated.

    You also might want to consider another frequently mentioned condition on this site, mast cell activation syndrome, see:
    http://forums.phoenixrising.me/index.php?threads/mcas-primer-for-physicians.19931/

    Another thing I offer as a possible help is that if you are having trouble with methylation don't be afraid to try hydroxoB12 instead of the methyl. This is what I use and it has helped. The methylB12 is the proper choice but the hydroxy can work too.
    And whatever diagnosis you do have methylating will probably help anyway. I read somewhere that phenobarbitol depletes the bodies stores of B12.

    You might want to consider diet modifications as well. There are many threads here for that too. I mentioned gluten free.
    Although I went gluten free/reduced I got to thinking about it and it may be a good idea not so much with regard to gluten as it eliminates ingesting the fortified B vitamins that get added to gluten products. The cyanocobalamin and folic acid which are not bio active forms of these vitamins. But this is supposition on my part. I'm just throwing things out there for your consideration.

    At the end of the day what matters is what works to relieve your symptoms and helps you feel better.
    SD
    merylg, xptriado and Valentijn like this.
  19. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,396
    Likes:
    4,280
    USA
    "CFS" essentially means hypochondria to most doctors (they're wrong, but that doesn't help) and in some medical systems that means you can't get any reasonable medical treatment because they don't want to encourage your so-called imaginary illness. You are better off seeking treatment for each symptom, one at a time, than getting an umbrella CFS diagnosis and having all your symptoms ignored.

    The symptoms you have described can occur as the result of a number of conditions including the psychiatric and CNS conditions you say run in your family.

    The ME/CFS we are generally talking about here is defined by the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC).

    To meet the ICC definition, you must have:
    Post-exertional Neuroimmune Exhaustion (see below)
    3 neurological symptoms in 3 of 4 categories
    3 immunological symptoms in 3 of 5 categories
    1 energy production/transport symptom

    Post-exertional Neuroimmune Exhaustion:
    There is a nice summary of the ICC definition here is you want to know about what ME/CFS really is. It is NOT just fatigue and neurological/psychiatric symptoms, although those can certainly be a part of ME/CFS.
    merylg and Valentijn like this.
  20. xptriado

    xptriado

    Messages:
    16
    Likes:
    14
    @SOC thank you for the information, although I am not really trying diagnose myself with CFS, I was just trying to get more information about 23andme, how helpful it has been for you and how helpful it could be for me, because this is prob the community online that I found people do more genetic testing. In addition the forum is a very well organized place where I could get more insight from the very knowledgeable people here like yourself. But it is very good to know I don't respect the current ICC for CFS/ME!

    @Snowdrop your advice is very good. I will discard from that website the disorders that can't be related to myself.
    Regarding the methylcobalamin, indeed I was thinking of trying some other type of B12 like hydroxi...I will see in the coming days if I find a need for this.
    Mast cell activation is also something I never heard of. I have much reading to do now..
    I've been thinking of more diet modifications too. I have eliminated cow milk now and replaced it with coconut, rice or soya..althought I must say i hate it!

    So again, decided to ask more questions to my mother:
    • The night I had the first fits I took a medication called Metoclopramide for some gastrointestinal thing...I just read it can lower seizure threshold and lead to fits! As the EEG's I did after the fits came back positive for epilepsy and because apparently the days after the fits I could sense I was going to have fits again..they decided to medicate me 2years with phenobarbital. I'm not a doctor, but honestly if I had fits the night after a medication they gave me and if I the next days I am acting all weird and sensing more fits...couldn't they just give me an anticonvulsive for a few days until the medication that cause this is out of the system? I don't get it...
    • My grandma said before she had problems with anesthesia, like CNS problems too... So maybe it comes from there.
    I'm gonna order the 23andme tonight, now I'm curious to see if something shows up.
    :)
    merylg and Valentijn like this.

See more popular forum discussions.

Share This Page