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18 years old, NYC, CFS all life, in need of suggestions

Discussion in 'Lifestyle Management' started by Dmitri, Oct 13, 2012.

  1. caledonia

    caledonia

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    I believe the anesthesia was another straw in a whole bag of straws. After that, new industrial carpet at work caused anxiety and concentration problems bad enough that it affected my work. Then I sort of recovered from that. Then a change in jobs (at the same place) and a move to a newly remodeled building is what finally did me in.

    A few years prior to the anesthesia, I worked with industrial solvents for a couple of years. Add in some mercury fillings and poor methylation cycle genetics, and voila.
     
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  2. merylg

    merylg Senior Member

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    Dmitri and taniaaust1 like this.
  3. merylg

    merylg Senior Member

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    Hi Dmitri,

    I have found this site useful for information on mitochondrial dysfunction, now thought to be involved in many diseases:

    http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934637

    It's worth getting checked out for some of the commonly known mitochondrial diseases & that involves seeing a Neurogeneticist. Not all mito diseases have been characterised. Not all are inherited through the mother (mito DNA mutations). Some are due to nuclear DNA mutations that affect mitochondrial function, so can be inherited from either parent.

    http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934629

    Some of these show up in childhood. Some of them are triggered later in life. I'm going to get investigated for mito diseases, but still waiting for my appointment in Nov. I was told by someone who "knows" that "nothing moves quickly in the field of genetics" :(

    Many here are mindful of what may prevent mitochondrial damage & some take supplements to support mitochondrial function. Read Dr Sarah Myhill's thoughts on mitochondria & CFS here:

    http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
     
    Dmitri likes this.
  4. Dmitri

    Dmitri

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    Thank you for all these posts, I am very grateful. This information may save my life if my choices become limited in dental surgery.

    My mother's first CFS onset was in teenage years after a doctor irresponsibly applied large amounts of iodinol to her throat, some of it reached stomach. It caused dizziness, liver symptoms etc. but she was not disabled by a large degree. Drugs also affected her, but she really became debilitated after taking antibiotics 2 years ago.

    I am still awaiting a 23andme sale in order to start exploring the genetic aspect of this. Very helpful links, looks like humans only scratched the surface of DNA studies...

    Another question for those who are on mastocytosis mailing list: is my message visible? I sent a message a while ago using yahoo's group page and I'm not sure if I did it correctly.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Dmitri,

    I'm not sure if this has already been suggested, but have you considered acupuncture for dental anaesthesia?

    Sushi
     
  6. nanonug

    nanonug Senior Member

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    What name did you use? I could not find any message sent by Dmitr...
     
  7. Dmitri

    Dmitri

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    I am actually looking for acupuncturists, Sushi. I hope to see the visceral therapists you suggested this week btw, you helped me verify information about him :)

    nanonug: my email is legion7708 at yahoo . com
     
  8. nanonug

    nanonug Senior Member

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    I didn't find any messages from legion7708 either...

    Did you get any answers? If not, repost and tell me so I may check.
     
  9. CAcfs

    CAcfs Senior Member

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    I will give my brief thoughts because I'm really tired......

    ...if you have never been able to have a job, which is what I would guess based on your post, you would apply for federal SSI. Google "how to apply for ssi." If you are a U.S. citizen. Gotta be a citizen, i think. It's for those who have been disabled before they were old enough to work. If you have worked, you'd apply for SSDI (I believe), which is similar but they decide what to pay you monthly, based on your past wages you earned. With SSI, it is a flat rate, you end up getting like $800 a month, it keeps going up with inflation every year. And once you are awarded SSI, it is never taken away your entire life, unless you start working. Then you notify them and they stop the payments. But then if you get sick again and stop working, you notify them again, and they restart the payments. I *think* that is the case, so don't take my full word. Then the only other way it will go away is if you marry someone with an income. That is the situation I"m in. But if I get divorced, they would start paying me again and I don't have to reapply to be considered "disabled" because I proved it once. I believe with SSI, you only gotta prove it once. The basis of SSI is that you show you have a disease that is not expected to improve. Very few people end up even able to apply for SSI, because very few people qualify for it, since most people have worked a job before something disables them to the point that they can't work. So it is kind of the government's safety net for people born too ill or disabled to work, or those disabled in childhood.

    Anyways, apply now, they will probably deny you the first time, then just reapply, just keep sending them more and more info, keep jumping through all the hoops they ask you to jump through. Every time you get denied, appeal it. You don't need a lawyer to do it, if you keep sending them tons of info from a doctor who truly believes you are disabled, each time they ask. My mom did all that for me. She just sent them tons of info, everytime they asked....at the risk of sending way too much. She sent any bloodwork that was abnormal, any info she had on X disease or Y disease. And if those in charge send you to one of their doctors for analysis, and that doctor decides you are not disabled, just keep apealing and apealing the decision. Send something stating that that doctor is not well-versed in your condition (chronic fatigue syndrome) in your appeal, and include a letter from another doctor saying that that is your diagnosis and that it causes X, Y, and Z symptoms that make it unable for you to perform any useful occupation, even while sitting at home in a chair.


    THEN, when you have SSI (and it will probably take over a year or more to get.....but if you get it, they will also pay you a lump sum based on the money you would have gotten if you got paid every month from the day you applied, in addition to then paying you monthly)....anyways, once you have SSI, it is easier to then get things like food stamps or Medicaid (state healthcare for the under 65 yrs old and disabled), both of which you get from the state, not the federal government. But my experience was that when I applied for those things at the local offices, they saw I had SSI, and thus was disabled, so in some states, that helps the state not pick you apart too much when deciding if you qualify for food stamps.

    In other words, get everything that you deserve, from the government. I applied based on some other conditions.....i won't say what....but my guess is you can list your condition as things like dysautonomia, or other fancy diagnosises that us CFS people generally have, that can be proven (dysautonomia with tilt table test). Just list ALL conditions you have. Like if there is a fancy name for B12 deficiency and you can prove it, etc. Do some research online....if you read that they deny chronic fatigue syndrome a lot, use other diseases you fall into as what you list as the reason. Like find out if you have certain autoimmune diseases, like I think I saw Bechet's listed. I am not sure on that, like if they deny CFS a lot, so I'd ask someone, like ask on this site. Maybe you could list cfs too though, or maybe it's not an issue. I am remembering that my mom listed like 6 diseases for me, because pretty much any abnormal blood result you get can correspond to a disease's name (Within reason). You'd be surprised how many things you technically have. Include psych diagnosises too like idiopathic hypersomnia, which means sleeping to much, etc etc. Normally sleep specialist or psychiatrist could diagnose that? You get the idea.

    Aside from that.......if you can get your whole family to move, warm climate does help me. Especially the sunshine. However, you may want to look into states that do not have long lines for gov assistance for things like food stamps. In general, I hear Indiana is good. Just google it. Things probably change yearly. I think California is one of the worst though, because their budget is so awful. I think even the disabled cannot get into the healthcare program there, there's a long waiting list. I would avoid states not doing well financially, like California, and Illinois, possibly Ohio.

    Also, a state where it is cheap to live. Cost of living! Maybe Texas would be better for you. Cost of living is so low. If you are on gov assistance, you could maybe swing TX and actually afford to live, esp if you have family. Maybe AZ? Maybe parts of FL but I don't know what their budget is like. Gotta be better than CA and IL. Maybe a cheap state in the southeast, but I dunno who's best for assistance. Maybe GA.

    Just listening to your story, it sounds like there could be something fungal going on, yeast, or otherwise. Trigered by the antibiotics. I actually think that that could have been the cause for my sudden onset too. I didn't get triggered by antibiotics, but I was eating a lot of sugar, and there are indications that I am very fungal, yeast or something very similar, and I hear that can cause sensitivities like what you describe, food, chemical, etc. though I"m sure there is a genetic component as well that would play into it too, but you can't change your genes. So you could try Diflucan one day, but be prepared for MAJOR die off, headaches like you've never had. Will have to go slow. Or try natural anti yeasts like olive leaf extract. Nystatin is a drug, you'd have to start wayyy slow, but it doesn't go into bloodstream, so that's an option that could help and might be better based on what drugs you tolerate. Diflucan seems to help me..... I actually have too much die off on Nystatin. Even though nystatin should be easier on the body, theoretically.

    I am also getting help from Perque brand hydroxy B12 sublingual tablets, TMG by Now brand. Acai capsules, 2 at a time, from Now brand are also good. Those all help my energy. Coffee does too, but have to use in moderation.

    Anyways, best of luck! Try to get some kind of assistance with finances. It is not easy, but worth it. Then, try not to spend alllllll your money chasing down cures that are not proven. Trust yourself more than anyone trying to scare you into something theoretical. Make very choosy choices with treatment, while we are talking about finances. Tens of thousands of dollars later, and I'm still sick, and I do best choosing my own treatments with vitamins from iherb.com, or just taking breaks from it all. Avoid anythign expensive unless its proven. Try anything your health insurance will cover.

    For the OCD, try something like Zoloft. Trust me, I get it. Sometimes SSRI's can help the gut too. You'll have to google that. There is some kind of theory called depression of the gut.....i'll look for the study. Basically the SSRI actually helps the gut function.

    I also like high doeses of Carlson's The Very Finest Fish Oil (not their concentrate), has to be "very finest" in name, for my anxiety, maybe it'll help your OCD. I get it on iherb.com. It's pricey though, so wait till you have a little money to try stuff. No shame in trying psych drugs, they can really help. Lamictal is good if you have moodiness and you don't react well to SSRI's...i saw improvement of OCD symptoms with it, and I only needed 100 mg which is low dose. Sometimes they will use Lamictal off label, meaning for things other than what it's intended for. OCD is rough rough rough so get help if you can. I find mine comes and goes in phases, depending how my overall health is. I actually think the illness is causing my OCD, though of course I must have the genes for it too.
     
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  10. CAcfs

    CAcfs Senior Member

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    Also, look into getting a sleep study. Large tonsils or adenoids (not sure if doc can even see those on throat exam, keep in mind) can cause obstructive sleep apnea, which can cause you to feel HORRIBLE during the day. It can cause psych issues. Believe it or not. I do have apnea, and feel better when I use my CPAP. I think all the infectious crap could be causing my tonsils or adenoids to be too large.....they say my tonsils look okay, so something else down in throat or palate could be infected.

    But when you say this started after an illness as a child, maybe you have had swollen tonsils and/or adenoids since then and apnea began. Again, you can't see your adenoids. Children can def get apnea, and it is normally caused by somethign swollen and inflammed, whereas for adults, its usually because they are overweight so the fat inside their throat is causing it. But you and I both got sick as children....so tonsils, adenoids, etc etc.

    You may not know you snore....and/or...may not be aware you stop breathing suddenly at night. You can still stop breathing without snoring. I wasn't aware I had this! Someone litereally would have to watch you sleep for 8 hours, and even then, they might not notice it if it's subtle? Even if you don't fit the classic definition, you might be amazed. The fact that you've had this so lifelong, makes me think could be obstructive apnea from a real anatomical obstruction (not weight gain) that started in childhood. Because lets face it, most transient things do get better, but obstructive apnea never would. So use your fatigue as a reason to push a doctor to send you to a sleep specialist to order an "Overnight sleep study". Don't get the cheesy one they do at home. That one stinks and only measures oxygenation. My oxygenation was fine yet i still have apnea and have improved with CPAP therapy. And even with my oxygenation at night being high, my sleep was still disturbed enough to make me tired during day.
     
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  11. Dmitri

    Dmitri

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    CAcfs I couldn't respond because my computer stopped working. Thank you so much for the detailed response, I read it several times and will respond when I get the chance. I post this because I want you to know that your post wasn't ignored.

    Now I will have to look to purchasing a new PC = stress
     
  12. vli

    vli

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    Dmitri, just wanted to let you know i am leaving nyc. i am also VERY sick, relying on my mom to pack all my stuff, arrange for shipping abroad, etc. so i'm sorry i won't be able to meet u, but i'll happy to add you on skype when u get a new computer.
     
  13. taniaaust1

    taniaaust1

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    thanks meryl. Its another thing in the huge list of things which supports I probably have a mito issue as well as ME. Even before I got ME/CFS ... I had issue with anaesthetic and couldnt take the laughing gas at all, one breath of it and its instant extreme sickness (even when turned right down) during childbirth as it made me spew my guts up and made me feel very very ill.
     
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  14. CallieAndToby

    CallieAndToby Senior Member

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    Hey we've already talked on healkick a lot. But there is a disorder PANDAS that causes sudden onset of ocd and is treatable. Only a select few neuros can test for it. Anyways, I am going to get tested this upcoming year.
     
  15. Dmitri

    Dmitri

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    CAcfs thanks for the big response. I have made no progress whatsoever in diagnosis or getting welfare, these are overwhelming tasks for me. On some weeks the IBS is not as bad, I will have to choose carefully. I really appreciate the step by step instructions, it makes everything easier.

    I won't survive Florida. Suffocation or heat exhaustion is probable because of the wet, hot air. During Summer in New York; an air conditioner is the only protection against this, but it brings other problems. A hot and dry climate (AZ) is certainly an upgrade, since shelter can be enough and the atmosphere won't be an oven due to the heavy moisture in the air. California has the best climate from what I've seen, but you are right about it being a mess economic wise therefore an unrealistic choice for me

    I have repeating memories of a day from age 7. I was watching a documentary about wildlife and the animals were so lively. Children my age moved so fast and effortlessly too, all people do, plus when they speak it's so fluent and effortless. I had pounding headaches that day and was always sick (like I am now). Questioning all life, I was unaware that everyone else felt so much better, thus I didn't understand their joy and fluidity of movement, how freely their necks turned, etc. I thought everyone feels the same pain.

    I still don't quite know how a healthy person feels, only having fantasies about relief, my nerves being released from the pain. Those without CFS don't know how CFS patients feel...

    At least I can still, with my limited brainpower, think about how life would have been if I weren't unfortunate enough to receive such persistent and stupid doctors in the first place, or maybe if my parents weren't gullible enough to comply with them. On one hand, it's so good to know the potential I started with and how well everything could have been, but thinking about this brings sadness. I rarely get the chance to think deeply at this point, only when the pain and brainfog slightly eases its grasp. If anything, I most likely have a genetic sensitivity to toxins since my mother has very similar symptoms due to other prescription drugs, including antibiotics forced on her when she had anemia. This hypersensitivity would probably be dormant until a severe shock (in my case, antibiotic + diuretic)

    My mother said I was very healthy until that point, that I was able to do advanced movements right away which surprised hospital staff, and smiling too. I looked at photos of myself as an infant yesterday and it made me very sad.

    Interesting that you mention fish oil. I add cod liver oil (with no additives and the least processed I could find) to bread. The feeling of impending dread got reduced and I have a little more energy for walking without breaking down, but I can't attribute this to the CLO with absolute certainty. It doesn't aggravate IBS-D to my surprise. I use Sonne's,. I stopped purchasing Carlson's because they began to replace the naturally occurring vitamins with synthetics. I will have to try fish oil too. CLO is the only realistic way I can treat vitamin D deficiency.

    I am getting prepared for wisdom tooth extraction, with anesthesia sadly. It's getting worse, and left untreated might even make me suffer more than the anesthesia. I hope it doesn't injure me badly. If it's successful, I want to get braces to fix my overbite so I would finally be able to close my mouth properly. If the anesthesia does hurt me significantly like all drugs did in the past, I might have to take the easy way out.

    vli That's unfortunate, meeting someone with CFS is probably one of the few desires I had in life. We should have done it before winter. I didn't get a new computer yet and I'm still looking, it's hard to find the right one. We will definitely skype

    CallieAndToby I am trying to remember when my OCD started. I can remember being compelled to do rituals at age 10-11. Also a problem when music or sounds in my head keep replaying, which I think started a bit earlier.
     
  16. CallieAndToby

    CallieAndToby Senior Member

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    Dmitri I have an appt next week with the PANDAS specialist, if anything, I fit this disorder to a tee. It usually starts in child hood with strep but can continue into adulthood. I hear the beginning is problems with tonsils, throat, and sinuses. Here is a very interesting article about it: http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html . I will let you know more after my appt. The primary symptoms are: ocd, tourettes, tics, anorexia and or other eating disorders, depression, sleep disturbance. It is also a neuroimmune illness, it is related strongly to bacterial infection but also viral and autoimmunity attacks on CNS. For me, because I had sudden onsets of anorexia and then ocd, I think it's important to at least be assessed for this, if nothing to rule it out. I TOO have the constant music in my head, especially beats and rhythms, so I am obsessively tapping my fingers all the time. Treatment is: IVIG, antibiotics, removal of tonsils, specific medications like wellbrutrin, and they try to identify the infectious agent and treat that. It was only discovered in 07 and only a small amount of neuros and psych's know about it and can test for it, my consultations will be by phone only. We'll see.
     
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  17. Dmitri

    Dmitri

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    I got the dying tooth removed 2 days ago after a crippling pain attack at home. Rather than wisdom teeth, this one and 3 of the other improperly positioned are molars who barely fit in my undeveloped jaws. Thankfully, local anesthetic didn't have a severe effect on me. Traces of it were swallowed and caused stomach spasms, however. The pain was severe with endless bleeding and flu-like symptoms for the next 10 hours or so, and I only fell asleep deep into the night after much struggling. I hope I won't need to have another one pulled out, my teeth are so jagged with worn enamel. A few of them already have deep holes. The next dosage of anesthesia may be reactive.

    I will think about at least fixing tooth alignment with orthodontics, maybe they will bless me with the ability to close mouth..
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sounds horrible. Are you doing better now?

    GG
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    Aww...this makes me so sad. After reading all of this, I realized....WOW..this young girl is so smart! You really are. Intelligence has not been drowned by CFS. You are young and I was 18 when I became ill.

    I JUST WANT TO GIVE YOU A BIG HUG. :hug:

    I don't have too much to say because so many others covered it. I so want you to get better, being so young.

    I had severe teeth issues that made me sick. I am hoping having this awful wisdom tooth removed will help. Also, give yourself some time to heal. That was hell for me and I too had that removed at 18 and was sick. Later, I became quite ill again with teeth. Teeth are a huge stress on the body when something is wrong.

    And mold is MAJOR. Mold makes me nuts and so many in NYC get sick. However, I am not going to tell you to pick up and move as it is not always a viable option and I moved to CA to get better and the healthcare system is completely different, many doctors do not take medicare, which you are not even on but also the expense of CA is out of this world, but then again, so is NYC...but there are more medical choices in NYC. California, I had to pay everything and I do mean everything up front. It was crazy. Then...maybe my insurance would reimburse me.

    My teeth caused mucus to run down my throat and I was so sick with infection from my teeth. I have left my family's home in Vermont due to mold...picked up and driven back home because mold made me OCD. Yup.

    Anyway, I just want to say, "Hi" and keep on writing so that we know how you are. Welcome.....
     
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  20. Dmitri

    Dmitri

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    ggingues The tooth was remove at about 6:30 PM. The pain became strong after anesthesia wore off, since I cannot take pain medication like the usual procedures prescribe. The bleeding was also strong. I went to bed at about 10:30 PM and struggled to fall asleep until about 4:00 AM (The bleeding and pain were still persisting) I think I woke up at around 10:00 AM, bleeding halted by then. Flu-like symptoms continued throughout the day, I felt extremely drained due to blood loss. On second day now, flu symptoms aren't so severe but I got an IBS attack which made me feel much worse.

    IBS-D went down in severity over the last weeks, allowing me to reintroduce foods like potatoes, chicken, etc.

    The Spitfire Thank you for compliments and hug, they changed my mood for the better :) I always check if I have enough intelligence remaining to communicate. I think I was smarter in the past when symptoms were less severe, but never to full potential. I often fear of growing stupider. Even if all ailments magically clear up, I wonder how degenerated my brain compared to how it naturally should be, since all of its development took place during extreme cripplement. My ribcage and jaws are most noticeably undeveloped. Also I'm not a girl, but I can understand why you thought so :)

    I am definitely underestimating effects of mold. Do you find the OCD symptoms to subside slowly after escaping moldy locations? I wonder if my OCD, mouth breathing, or another symptom may be linked to the mold exposure here. So many variables....it is too late, regrettably, to effectively correct the ones that already took a toll on development. Mucus in throat is a repeating problem for me... if a draft attacks or if I place my feet on a cold surface, a wad of mucus forms in my throat momentarily.

    It always feels good to read these posts, thank you!
     

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