Home Dental Extraction SUCCESS (#2)!

Another One Bit the Dust

I survived my second home extraction on the weekend. It was a very infected tooth, an upper rear molar, one that I had somehow managed to retain a year longer than expected. It was actually the first one to get infected last year, but then the other tooth went ballistic, and by the time that extraction site healed, this tooth had calmed down enough to be very useful for eating with.

In hindsight, waiting so long may not have been such a great idea, as in the end, the infection was nasty. Very nasty. It put me into a terrible funk that was really difficult to push my way through, similar to the depression some kinds of mold can cause, and created the same challenges MCS/ES exposures cause, like brain fog, difficulty thinking and doing things, and a real lack of energy. And it stank when pulled. Really stank.

I am so grateful for the home visiting dentist in this area. Not only is he fragrance-free, but he is willing (and able!) to take other precautions to make things safe for me.

Last year, before my first home extraction, we discussed everything that was needed for the procedure, and what was necessary to make it as safe as possible for me.

This year I couldn’t find my old list (despite seeing it a month or 2 ago) and hoped he remembered his. This is what I do remember, and what we did:

Citanest Plain is a local anesthetic that is tolerated better by many with MCS/ES.

Last year I asked for smaller doses as I wasn’t sure how well I’d do with it, but then ended up asking for more (since I didn’t keel over right away, I figured less pain would be better). This year we started out with more. I am just not as brave as the amazing Amelia Hill, who also had a molar pulled at home, but with NO anesthetic at all!

Dentists can prescribe oxygen, but it isn’t covered by the dental plan here, so was an out of pocket expense that a few online friends chipped in to cover last year, and I had enough left to use this time (although this time, the dental oxygen system I rigged up with safe tubing and old dental mask somehow jammed and wasn’t letting much oxygen through, so a lot was wasted).

The oxygen really helps with the airborne exposures during the procedure, and it also helps recover from the chemicals in the anesthetic after.

NOTE: Medigas really needs to start carrying the tygon tubing that is so much safer for people who have to avoid PVC and the chemicals most tubing is made of.

I have an old wing-back chair that isn’t really safe for me to sit in for any length of time (the synthetics aggravate my fibromyalgia), but it’s ok for short periods. It works great as a dental chair when I’ve propped the front legs up while leaning the chair back (in a solid way) to provide an angled chair that provides firm support for my head while the teeth are pulled. (Only drawback is that the dentist has to watch his toes as it’s not all open space below with the propping)

He takes extra steps to avoid contaminating the gauze with fragrance exposures. Last year we discussed using some from the middle of a brand new box.

I place foil on the table for him to put his supplies on, the ones used for the procedure  (and a sheet of mylar in the foyer for his bigger tool-kits that have absorbed 2nd and 3rd hand fragrance residues, so that my floor doesn’t absorb them).

He puts on a tyvek suit, even though he is fragrance-free, to contain the 2nd and 3rd hand residues he’s picked up during his day.

He washes his hands very well with my dish detergent and some baking soda, instead of using the gloves made out of materials that I don’t tolerate.

I have a bowl for spitting, and a glass of lukewarm water for rinsing as the anesthetic tastes nasty if a drop gets spilled in the mouth.

I have a towel to cover my chest and the chair with in case of squirting blood, and a small one as a bib.

I sign a waiver relieving him of responsibility should anything go wrong. I feel comfortable signing one for him as it’s obvious to me that he does his best to be as safe as possible for me.

I also realize that in normal circumstances, people have medical doctors and procedures they can follow to deal with potential problems, access to interventions which I do not have.

He should not have to bear the responsibility for this systemic discrimination on his shoulders, especially as he is going over and beyond what others in his profession do to make a positive difference in people’s lives. Like he said last year, he takes his oath to “do no harm” seriously, and not as an excuse to do nothing.

If I was dealing with a dentist who was not taking my MCS/ES needs seriously, and who was not able to grasp the sources of potential problems and the need to avoid them in every way possible, I’m not so sure I would sign such a waiver, or even if I would consent to “services” from them.

People are without access to dental care because of toxic fragrances and lack of knowledgeable (or willing to learn) dentists where adverse chemical effects are concerned.

Since I didn’t have safe or appropriate access to dental care for so long, my teeth are almost all loose now, in fact, the next tooth that will have to come out let itself be known tonight with the excretion of some extremely foul tasting pus, similar in vomit-worthiness to what the one that just came out reeked of. Pardon my graphicness…

dental home extraction 2

And another compassion award to the dentist for silently putting up with that vile stink! Even though I have serious congestion (rhinitis? sinusitis?) I had to get that stinker wrapped in foil, as it was going to make me sick, and “natural” smells usually don’t bother me at all.

This time at least  I was able to give him a small token of appreciation and gratitude, an aloe plant that had even grown some babies since I planted if for him last year, after our discussions then had somehow brought it up, perhaps as a source of natural healing.

As much as I like him, I wish I wasn’t going to have to see him again so soon, that this new puss-stinky tooth would have waited until the other one fully healed over (having no stitches makes for a longer healing time – last year it took about 3 months for all trace of the extraction site to be gone). I suspect that using that side exclusively, even just for soft chews, left some food residues in the gums and irritated it beyond repair.

What would likely be best for me now would be to have some x-rays of the roots and get all the loose teeth removed at once in a hospital. I only have a few front teeth that aren’t loose. I may as well have everything out so I can work on my toothless grins.

I do not relish the thought of going through a year or more  of one nasty infection and mind-numbing pain episode after another, each one lasting weeks at a time, while waiting for the previous extraction sites to heal enough and for new appointment openings to have them extracted at home (without x-rays) and still be able to eat somehow.

But, to do that would mean a medical system that accommodates people with severe MCS/ES, and our current medical system does not. I would need the assistance of an advocate to train every person who would be involved, and to go through every moment of the process from stepping foot into the building to leaving afterwards.

Living without a safe washer and dryer and spare non-toxic clothing to wear to leave home with is another obstacle I have not been able to solve. I only have a few pieces of safe clothing to wear at home. I cannot wear them elsewhere as they wouldn’t be safe to wear at home afterwards. I cannot detox/decontaminate new clothing from their new chemicals without a safe washer and dryer, and I haven’t found anyone or any service  to help make some safe for me.

What might be my biggest concern now is my need for a safe (one that emits no VOCs when running) heavy duty blender to puree all my food with. I need a glass or SS container with no plastic contact with the foods, and minimal plastic elsewhere. Most motors are made from plastic with flame retardants and other off-gassing chemicals that totally disable me. For some reason, the manufacturers don’t make them with enclosed motors, they  all seem to be vented = blowing the fumes into the air.

I have to make (now puree) all my own food from scratch due to allergies,  sensitivities and chemical contamination issues with prepared foods.  I may never be able to get replacement teeth due to materials incompatibility and cost issues. Having safe equipment is essential so that I can feed myself the foods I tolerate.
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I realized tonight that if I ever do recover enough to be around other fragrance-free people in a social setting (we’re all so different even with laundering tolerances), dinner or lunch events will never be the same, nor will I be able to have any more pot luck parties. It would have to be purees only. I’d need those SS food trays, the kind with separate areas for each food.  Mmm… pureed toast side dish anyone? Puree parties? Fun times. I wonder if anyone has an Organic Purees For Life Cookbook out yet?
For those of you who don’t understand why I am having trouble finding safe appliances:
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A STUDY ON THE VOC EMISSION RATES OF HOME ELECTRICAL APPLIANCES

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Benzene and toluene, among others… from everyday technology…

http://www.inive.org/members_area/medias/pdf/inive/iaqvec2007/nozaki.pdf

Another thing, since so many things are interconnected, would be about that  Death With Dignity movement. Why is it that I could qualify for assistance to kill myself when life becomes unbearable, but I can’t get appropriate assistance to LIVE WITH DIGNITY in this country?
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I would rather live, please and thank you.
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I would rather be able to have my teeth taken out at once, in a hospital, safely, without making it impossible for me to half-decently look after myself for months or longer afterwards, and I would rather be able to have my teeth taken out at once in such a way that wouldn’t make me want to die from the debilitating effects of the exposures that they would currently subject me to.
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I would rather be able to make my own food that is safe and healthy for me to eat, than be subjected to appliance fumes or  food products that make me sick and disable me so much and in such a way that will make me want to die before they outright kill me, slowly.
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There is no safe, fragrance-free home help from what I hear from others. The PCWs all have fragrances on them.  I am on my own here, as I have been.
 Imagine this 1
I want everyone to have their basic needs met when they are unable to meet them themselves. I want everyone to live with dignity, to receive appropriate assistance and support with the things we cannot do for ourselves.
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Is that really  too much to ask for?
So many people with MCS/ES need safe access to dental and medical care. Please do something to help make it happen. Perhaps one thing that would help get things moving would be to support the OCEEH.
Please. Even if you are not an Ontario resident, ask them to make this project happen.  Take action.
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You can make a difference
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And if you know of an advocate who could help me get MCS/ES-safe access to hospital dental care (and transportation) in Ottawa, please let me know. While I am so grateful to have safe home emergency extractions available, this is no way to live. There has to be a better way, there just has to be.
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30 responses to “Home Dental Extraction SUCCESS (#2)!

  1. Morning Linda, take that other tooth pronto! Once you get that infection out of your system this will allow you some healing you will not achieve with this infection. Your teeth very much rule your body…teeth to stomach….blood stream. Heal well!!

    This is from denny’s iPhone

    >

    • Thank you. I left a message for the dentist.

      New oxygen won’t arrive till end of the week so it probably won’t happen till next weekend at the earliest.

      This will be happening one after another until all my teeth are out. The gum disease and bone loss is bad.

      There are glutathione issue connections with MCS/ES and periodontal disease, I’ll see if I can pull up some of the research in another comment

  2. Effect of dental metal ions on glutathione levels in THP-1 human monocytes.

    http://www.ncbi.nlm.nih.gov/pubmed/10888278

  3. Dental adhesive compounds alter glutathione levels but not glutathione redox balance in human THP-1 monocytic cells

    http://onlinelibrary.wiley.com/doi/10.1002/jbm.b.30257/abstract

  4. Hi Linda, I’ve been trying to get some legal advice on claiming for some compensation (at least to cover my treatment) from this heavymetal poisonig that was inadvertantly inflicted upon me by ‘drilling down my amalgam filling to fit a denture’ and consequently have been under attack by someone hacking my e-mail again! I found your last e-mails in the spam section! I was getting worried and wondering about you as it had been so long since I recieved any news : (
    Glad to hear you’re getting rid of the focals of infection in your mouth! Not that your loosing your teeth of course, I know what it feels like and what your going through, me too! It’s not something that you ‘get used to’ easily, and when you have so little possibility of ‘tolerating’ the materials that they make dentures out of this just seems impossible. I have a denture that I can’t wear, I’ve tried and tried but it makes me sick and I get these actions of throwing up (mostly nothing comes out but the contractions and all are horrible!). I’ve even tried to use it while sucking on mints, that helps a bit or for a short while but you can’t be constantly sucking mints just to keep something in your mouth that you’re reacting to : (
    I’ve heard of dentures made from natural rubber (you know from the Gum tree) maybe you could ask your dentist if he could find this out for you. Have you done a test to find out if there are any compatible dental materials you can use? I have the same probs as you : ( I only have my one canine on top to use to (chew?) break up any little bits of anything. This situation doesn’t help our health much, until you learn to nourish yourself properly on a liquid/mushy diet there is some severe malnoutrition going on : (
    Bear with it, it’s not nice at all but it’s possible to survive this way at least. Reminds me of the lions and other ‘big beasts’ that some arab sheiks keep in the gardens of their palaces, they remove their teeth and claws and feed them ground meat.
    On the positive side I have to mention that I did a heavymetal urine analysis in november that came out with ‘high concentration of heavymetals’, then I started taking this safe chelation therapy (no chemicals just natural micronized Zeolite Pure which is a naturally occuring mineral you can read about if you look for ‘Zeolite Pure’, not other types as they can be synthetic versions! ) and now a few months later my analysis show low concentration! I promise you this really relieves symptoms and effects of toxic exposures greatly (for me at least) and I’ve got high hopes of recovery of my health from this♡♡♡ I’ve even found a biological dentist that may be able to help finally (if I can find a way to afford it ! : ( Well they have a multi-professional clinic that sounds really good so I’m going to make an appointment for a first visit (more or less 3 hours, costs 150 euros) to get an assesment. They do a bio-compatability test to check for intolerances to dental materials etc…. also.

    Stay strong (or strong willed at least) and remember that even in this unjustified forcefull home-arrest you are not alone!
    Big hug & God bless you Linda ♡♡♡

    • Thanks Therese,
      Sorry about your computer troubles.

      I hope you can find what you need too ♡

      Maybe someday we’ll be able to get some compatibility testing done for materials, and find funding in case there is something we will tolerate in our mouths long enough to chew with… A girl can dream, eh?

      One good thing about losing these teeth is that a lot of mercury is getting out of my mouth too! The old dentist used to like to pave the teeth with amalgam instead of doing spot fillings… Then perhaps a bit of detox would help. I’m not sure if I was tested for mercury, I know they did lead… I haven’t really been up to looking at those results (and it’s been a few years).

      Sending strength and blessings to you ♡

  5. They really need an alternative button to the “Like” for occasions like this where I really feel for you, am amazed by your fortitude, am frustrated by the system that has made it so difficult, but obviously don’t like anything about the situation!

    • Thank you.

      I have less time than expected to prepare for the next one, but I really hate the effects these infections have on my abilities to function…

      And yes, the social media designers really does need to create a “that totally sucks, hope things improve” (or similar) button

  6. Made it through another extraction and scheduled the next… I was more nervous this time, but it came out well… the infections are pushing them half way out so they are a lot easier to pull out…

    Now to get over the ordeal and give the skin a chance to heal a bit before the next one… in a week and a half…

    Then after that, there will be one more (for now, unless others flare). There’s a chance the others will settle down then, with these infected ones out, so that I may be able to fully heal from these extractions before the next round…

    It’s kind of odd to me that this is happening so suddenly, but then again, I’ve been in such a severe brain fog for so many years, that I probably just couldn’t feel the other signs (or remember them long enough to do anything about them, not that I found other options when I did try).

    It would be so nice if no-one else ever had to go through anything like this again.

  7. Wow, well done for managing this – I know you had no choice, but you managed incredibly well. Thank you for sharing the details – it will be really useful for others in the same situation. Thank goodness you’ve found such a great dentist.

    • Thanks Nicki!
      Two of the 4 teeth I need out now have been taken out, the others will go soon.
      I am very fortunate to have this dentist be completely fragrance free in his home life, it makes so much difference.
      For people with severe MCS, going f-f for a day or a week still isn’t enough to remove all the chemical residues.
      It’s making such a difference in my recovery time, and ability to figure out all the extra work i need to do to manage foods… It’s no longer about just opening the fridge and snacking on something, it all has to be cut, cooked, mashed, pureed…

      • Thank God for freezers (if you can tolerate it somewhere)! I make up big batches and freeze everything in jam jars.

        • I use wide mouth 500mg nut butter and mason jars for the thick soups I make, cooling overnight in the fridge first, and leaving at least 1/2″ of headroom from the curve or top of the jar so the contents don’t expand and explode the jar when freezing.

          My challenge here is being able to do it early enough to use my old and very noisy blender before my neighbor goes to bed – she is a very early person, and I am a very late person, and she complained to the property manager that the blender sounds like a chainsaw, so I can’t use it after 10pm.
          I usually start cooking at 9… it’s not enough time… and changing my body schedule isn’t easy…

  8. Hang in there♡ you will eventually find a way to prepare food for yourself that you will still enjoy and savour.
    I really missed eating salads, muching away on all those healthy vegetables, etc…
    You can use a food processor, or a ‘chopping’ type accesory to a little hand blender (stainless steel arm) and chop your salad up very fine, in tiny little pieces, so its not completely mushy if you prefer, and have it with an organic home-made corn or chickpea tortilla or pancake. The pancake helps to mush it around in your mouth savoring all the fresh tastes of the salad and to chew a bit with your gums (where they are healed of course) so you can still enjoy the tastes and almost chewing it. I do some fresh spinach with an apple, a finely chopped advocado and mix it up with some fresh lemon juice, olive oil and a bit of parmesano…. mmm so good!
    You can imagine…. it takes some time to get used to and to find the accesories that you need but you will find a way to enjoy your favorite tastes again and have healthy snacks ready for you in your fridge♡

    • Some of us will have to write “the gourmet purees with all the nutrition you need for people with MCS/ES book”!

      I need to find new appliances that are quiet and aren’t toxic. The ones I have tried in recent years all spew out toxic fumes.
      Also large SS pots without nickel. The large pot I have has too much nickel to leave things in overnight. I’m ok to cook with it, but I want to puree things before I put them in the jars and freezer, instead of having to thaw, heat and puree them when I need to eat.

      Once I can get what I need, it’ll be a lot easier.

  9. Hi Linda, I’m sorry you had to go through this ordeal. Reading about the compassion of your dentist makes me want to cry. It shouldn’t be like this for anyone. I truly think you will feel a whole lot better once those infections are out of your mouth and body. Smoothies and soups are in; I basically live on them because of digestive issues. Yes, we need a cookbook for these recipes!

    🐰Hugs🐰

  10. Ugh, so sorry, I wish I could find you a complete set of compatible new teeth as well as a stainless steel blender for when you weren’t in the mood to use the new teeth. You are really handling this whole thing well and it sucks that you have to handle it at all. Hopefully having these infected teeth out will help your other symptoms. Bleh. Hugs! 💚💚💚

  11. I have now had three extractions (at home) in 3 weeks, and survived to tell the tale. There are three more that have to go (for now). That makes for a total of 7 pulled teeth so far, with the 3 more to go it will be 10.
    This is what can happen from a systemic lack of access to MCS/ES safe dental and health care.
    The dentist said i was handling it real well though.

  12. Update:

    I had 6 severely infected and loose teeth removed at home over the course of 5 weeks in April and May.

    The extraction sites are slowly healing, but I still can’t chew with my gums, and am having to puree everything with my 35 year old blender. I am suspecting I have some nutritional issues as a result, but haven’t found help to deal with them.

    When the sites heal over, I will have one chewing molar left on top. The molar below it (on the bottom) may need to be removed sometime, as the gum is away from the tooth due to bone loss, and when that goes, I’ll only have some front teeth left to chew with (for however as long as they last).

    There’s another infected lower rear molar with a blackened mercury filling on it, but it’s a really big tooth, and it isn’t loose yet.

    Due to the size of that tooth, and the amount of mercury in it, I think it would be really difficult to extract intact (without spilling the mercury) until it does become loose, so I have to keep it in for an unknown amount of time.

    I had a difficult extraction at a dental office, where it took almost an hour (or what seemed like an hour) and that was with a room full of professionals and a very wise friend to take care of my needs should something happen.

    I don’t have any such help here, so under the circumstances, waiting seems like a better option. Not that blackened mercury and dental infections are fun to live with… I may need some professional advice on this dilemma, but from who?

  13. Sheesh, that was a LONG post! Written under the influence of exposures and infections…
    Thought I’d comment here now that the tooth I mentioned in the previous comment, the big one with the blackened filling, is coming out.
    Hoping that after it heals a bit, I’ll feel better.

    Summer was awful with all the pesticide drift and other VOCs and heat..
    Thanks to the donations received, I’ve ordered 2 of the 3 filters for one of my air purifiers, but when they arrive, I won’t be able to lift them for a few days after the extraction, so I don’t know when I’ll be able to change them (the canister with 18lbs of carbon is heavy for me now, and changing requires flipping the machine, taking the old filters out and putting the new ones in = something that should be simple is a lot of work for me that isn’t often possible to do)

    Anyway, I derail again…

    Less teeth in my mouth = less infections and less mercury… So eventually things will improve, right?

  14. Thank you for this link
    https://www.ncbi.nlm.nih.gov/pubmed/10888278
    good information is important to have. I have had two teeth pulled the last couple of wks both infected done in a dental office with a drug called ultracaine… which I believe caused a seizure. The dental surgeon thought it was “just my movement disorder” I don’t agree. That makes three bad reactions I have had to “caine” based freezing and all dentist so far make out it is the only game in town. I have made a note of “Citanest Plain” will I be able to find it when I need it … not my strong point.
    I also had a wk on and off antibiotics… amoxacillin and the movement disorder I have had for 8 months seemed to stop… 9 days later it came back… more antibiotics 7 days both time… it stopped again.
    Today I talked to my doc about this and she seemed overwhelmed can’t blame her… really I am not an easy patient to treat. We did some testing to see if we can find an infection that could cause a movement disorder… the rest is bad enough but when I have to stay in bed cause I can’t walk it is more bad.
    I have had several cbc done in the past couple of years as I have what seems to be an infection…but nothing ever shows up.
    So far I have not talked to any other mcs person that has a movement disorder tho I have found references to it… I think I am not thinking very well messing up a lot of things but well enough to attempt some things… like keeping a doc apt… it is a big deal to me and all I actually accomplished today but I did it.
    Linda did you find any type of false teeth you can tolerate?
    I am back to jerking especially when exposed or tired. I have more teeth that need attention a dentist that comes to you seems a stroke of luck that is likely to happen less than winning the lottery. I think you may be blessed in this instance… and I am glad you are.

    • Hi Sandy ❤ Wish you weren't having so much trouble finding safe and appropriate health care.

      Regarding "movement disorders" and MCS, one of the people Alison Johnson has filmed definitely develops uncontrollable movements from exposures.

      She is in this new video about MCS and the need for fragrance-free spaces. The video features doctors and people with MCS, and shows examples of some of the adverse effects people suffer from everyday chemical exposures.

      Have you ever been tested for Lyme Disease and related co-infections by a Lyme literate doctor? I don't have details on all that, but know the regular testing, at least in Canada, shows mostly false negatives, and long term infections are often said not to exist… sighs… hence the need to hook up with Lyme literate people.

      I haven't done anything about false teeth because … $… lack of assistance … no way to get blood drawn for tests without home health care… not well enough to deal with exposures…

      I hope things change soon and that we will all be able to receive safe and appropriate health and dental care.

  15. Thanks for the video Linda I will watch it. I have had lyme testing I think at the womans college… dr Kerr did testing showed I am EBV positive but not active said take some vit C… lot so blood taken that was all that came back.
    I am waiting to see if it flares again I don’t think it will right away… I have had this before many times we never get to the bottom of it is my feeling but maybe I am wrong.
    I am certainly more apt to jerk when I am hit with chemicals on top of many other symptoms I have to go to bed because I can’t stay upright…lay and jerk put on my respirator and wait, however long it takes. I am not sure the mask I use is problem free but it is way better than not having a mask… I wear it when it go out… could you go out if you had one? I use a half face respirator by Safety Works with GMP 100 filters..I talked to a representative at sw this is the best filter for product they have for people like us. It took some time to air out I soaked it many times in baking soda and water… had it about 6 months now I would not go to a store without it. I have a few others I am testing out…one by 3M made from a different material suggested by some person online I can’t recall who or where online.
    I am jerking again.. not near as bad as I was and it is not constant… scent voc induced I believe. Still can’t get out of my mind the antibiotic how well it seemed to work.. but can’t take away the jerking was 100 times worse with infected teeth doc which makes sense body was especially taxed. It did not just slow down it stopped on the antibiotic but I had laid in be a few wks and laying in bed has all but stopped it in the past .. in bed with the mask.
    I had more testing at my doc and have not heard back yet… she asked me if I minded being tested for std… I laughed it has been years said no test me for anything you can think of it if helps I don’t care test me for it. No word yet… an infection that could be cured or treated would be a God send…she is skeptical thinks it was the rest.
    Do you have a doctor in Ottawa?
    There is a clinic there that treats this..I am sure you know of it… they test then treat with small doses of what you react to… have you tried it? Are you on the waiting list?
    I am going to watch the video… and thank you for responding.
    ps
    did you have antibiotics after your infected teeth were removed?

  16. Ok Linda I got thru the video feel asleep on the first attempt but soldiered on after waking. I see Jenn Duncan and yes this is the same sort of movement disorder I have. It also varies like hers does…. I notice she keeps her back to the couch during her interview that is to hold her up.. she says as she tires out that she rides the wave… it is the same. The video the day after seeing a doctor is the same as me too lay and jerk… what has turned that around somewhat for me is the mask I use to be exactly like that after a trip to Toronto to see a doctor and it could take a wk of laying in bed jerking to recover. Sometimes longer all depends on what else might hit and what supplements you take … I take a lot of supplements and I will keep trying seeking what helps as long as I can.
    I don’t know much about her I would like to talk to her.. I noticed she has a walker and a wheel chair… a walker and a scooter were two things my doctor suggested to me… both terrified me. I don’t want to go there and I will fight it as long as I can. I made it as far as going to the medical supply store to look at them and set up an apt with the occupational therapist who does the initial assessment… I was too sick the day she was suppose to come and I cancelled. I have not rebooked and I fear if I do that will be me giving up any hope of ever being independent… that is not me… or the me I will tolerate being. I am not at all surprised by the suicide rate given in the video who would want to live like that… I keep thinking there are answers and I am looking for them.
    The Ottawa clinic I was asking if you had been to is this one
    http://www.oehc.ca/

    what do you know of it.. it is close to you.
    I am on the waiting list I have no idea how I am going to get there or work out the particulars but my guts says it is the only game in town that I have a chance at.

    To me it looks like parkinsons… to my doctor huntingtons… to any person it is something wrong.. it is obvious no way I can hide that one.. add the mask and you have a lepore.

    This is my thought on it at this point.. there is a connection between a some herbicide and parkinsons… that is the closest connection I have found to a smell..chem agent causing a movement disorder…
    oh crap it sounds too far fetched… I will get it for you…
    then I am taking a long rest…

    Research conducted by The PI and the National Institute of Environmental Health Sciences (NIEHS) has found that exposure to Paraquat, one of the most widely used herbicides in the world, may dramatically increase the risk of developing Parkinson’s disease. Study findings were published online today in the journal Movement Disorders. Lead author of the paper is The PI’s Associate Professor, Samuel Goldman, MD, MPH.

    What we found
    Risk of Parkinson’s disease was doubled
    in people who worked with Paraquat.
    Strikingly, the risk of Parkinson’s disease was increased
    11-fold in people who had a common genetic variant
    (defective GSTT1 gene) and worked with Paraquat.

    I have not looked too much at it yet I am a slow worker depending on how I feel… and how much internet I can stand that day…

    wishing you well…
    Sandy

    • I wish I had answers and the ability to create the solutions. The health care we need is not being funded. Pesticide poisoning could definitely contribute to major problems.

      I don’t know what the Environmental Health Task Force has been discussing, their updates only tell us they had a meeting and will be having another one, but no details of the discussions. I know they are under industry pressure to maintain the status quo, to keep us disappeared, so don’t know how much they will be able to do, despite the huge need for change.

      I lost all access to health care by not being able to renew my OHIP card. I couldn’t go in for a photo and the only exemption is with a doctors letter, but being housebound and not finding any doctors who do fragrance free home visits, I haven’t had a doctor since I left Toronto. Not that the OHIP card was any use, as no health care is safe for me, but it was symbolic.

      The clinic you linked to is said to be good, but the wait list was full when I moved here. I asked to be put on the wait list for the wait list, but I don’t know if they did. Plus, we need to have a primary care dr to see her, and I don’t have another dr. Not sure if she does house calls or not anyway, so I haven’t called in the last couple of years. It could be a 30 minute drive from here, I don’t know.

      Maybe the Task Force can pull off a miracle. They will be updating people at the annual MEAO event at Queen’s Park in May. So in another month or so, we’ll hear if we have anything to look forward to or not.

  17. Me again.
    I have another dental infection and am on antibiotics I got at a clinic after waking in severe pain over the wkend. I have been to the dentist and been referred to the same dental surgeon office I went to last time. When I talked with them about the reaction to freezing my apt went from a wk or so away to a few wks away as I now need a consult on meds before I can have this tooth extracted. I keep hoping there will be a simple answer like pull the tooth and the movement disorder goes away. I am not sure if I said this last time and am not up to reading even my old posts… sorry I am just not up to it. I came to find the name of the drug you can use …but since I am here…
    When I was on amoxicillian last time the movement disorder stopped… it did.. I thought it was a fluke then got all excited it was just an infection now it is gone walla I will be healed… but it came back.. so did the swelling this is all post extraction. I went back on the AB and the md stopped again. Then it came back and it all felt like a fools game again.
    I was dx with chronic fatigue fibro.. in 94 and have been searching all places for answers so I said all the above at a site called phoenix rising normally I would supply a link.. but not today. I just want this out there in case I never come back here and some other person happens to be like me … so they can have a clue. As I find the searching is endless and a bit of help is a God send… (thank you Linda)
    On the PR site I learned that glutamate is lowered by some antibiotics and the amoxicillin is one of them. So thought maybe I had the answer as to why the jerking stopped…the drug lowered glutamate and that effect stopped the jerking. It seemed to be a decent clue I then sought other things to lower glutamate… sorry I can’t recall details just now.
    Since the wkend it is only Tues today I am back to maybe it is a tooth infection causing all this ..but I know it is not causing all this.. some of it maybe movement disorder… is affected some if not totally by maybe infection maybe lowering glutamate. That is where I am now there and trying to find the name of the drug which you used… thanks I got it. I suggested to the dental office there was a safer drug… and said I would find it. I am not sure if they are going to take the word of an internet poster as something they can rely on or if they will want to do some other sort of seeking… investigation ect. I do want rid of this tooth asap… but since I was a problem patient and insisted my last reaction was more seizure than movement disorder it looks like it could be quite awhile.. my consult now if the end of the month so I have 3 wks with this tooth at least and the antibiotics will run out long before then.. as will the pain pills at the rate I am taking them.
    I am wondering Linda is you have had any genetic testing to see what drugs may be less of a problem for you?
    There was a time a decade back where I could not seem to tolerate any drugs my body rebelled now I can take some. I am not sure why but I have some ideas and I would like to talk to you about this in a more private way if that is possible.
    How did you come to learn of the citanest?
    I had the idea that I was going to have trouble with all caine type drugs and this seems to be another caine type drug..
    4% Citanest Plain DENTAL (prilocaine HCl Injection, USP)
    https://www.dentsplysirona.com/en-us/…Citanest-Plain…USP/…/1000227.html
    Citanest plain is contraindicated in patients who are hypersensitive to local … Citanest Plain Dental is available in boxes of 50 cartridges of 1.8 ml with your local 4% Citanest Plain DENTAL (prilocaine HCl Injection, USP)
    https://www.dentsplysirona.com/en-us/…Citanest-Plain…USP/…/1000227.html
    Citanest plain is contraindicated in patients who are hypersensitive to local … Citanest Plain Dental is available in boxes of 50 cartridges of 1.8 ml with your local
    It may well be this is the type of drug which has been used on me for a number of years already. No epi as at first it was thought that is what I was reacting to…later I reacted badly to epi free caines.

    I am now wondering if there is a reason other than genetic I can’t think of one but I don’t know that much about this.

    Back to infection and trying to find answers.

    As for the clinic in Ottawa maybe it is time to try again to get on the wait list last time I checked they were booking 2.5 years away.. the time is going to pass anyway and maybe it is a chance for some recovery at some level.

    There is a treatment place in Nova Scotia I am sure you have read about it…

    Do you know of anyone from Ontario who has gone there for treatment? Do you know of the logistics in being treated there if OHIP will pay for it?

    I have watched on tv how some patients are treated in the USA for this or that disorder or disease and OHIP pays for it as the services needed are not available here in Canada. For some reason Lyme is not on the list of disorders I guess as people are travelling and paying for that that themselves… it is all very confusing.

    One thing is covered and another is not…

    do you have any enlightening ideas to pull me out of the weeds on this one…

    is it is a dead end to try to get treatment in NS..or elsewhere… if so why is it that way..for us and say lyme patients… do you know?
    ps I am not getting notifications to responses tho I have checked the box to get notified… could you check that for me please…
    Sandy

    • Hi Sandy,

      I can only skim and reply briefly now… You mentioned Lyme, as I was reading your comment I was wondering if you’ve been tested for that? Antibiotics help with that…

      I came across Citanest Plain in online groups where others said they did ok with it. I haven’t had a bad reaction to it like I did with some others (that I don’t know the names of). I also take oxygen after to recover. Oxygen makes a difference.

      I haven’t had any testing done for anything except what they do at the Environmental Health Clinic in Toronto. I don’t have anyone who can do blood draws at home… and the testing itself (for the kinds of things we need) is also not covered by OHIP.

      I don’t think the NS clinic does a lot of treatment, EHC in Dallas does more, but Ontario doesn’t want to pay for any of it anywhere as far as I know. There have been legal battles over the last 3-4 decades about that…

      I don’t know why dentists won’t pull teeth that are infected. Maybe they don’t like the smell of pus or something. Maybe ask your dentist why? I think all of my extractions have been done with active infections. I don’t tolerate antibiotics.

      I signed a waiver for the dentist who does home visits that if anything goes wrong, I won’t hold him responsible, because I saw that he was taking every precaution in HIS power, doing everything he could to be safe for me, and that if anything were to happen, it was the failure of others not doing their jobs in ways that accommodate our needs.

      As far as treatments that can help us (not cure us) they are all out of pocket expenses and as I am housebound and poor, and have no access to them, I have not focused on learning everything about them. 10 or so years ago I read about the Pall Protocol, similar to the Ziem Protocol, and incorporated a lot into my routine and improved, but that was before a series of exposures I couldn’t get away from or have the resources to address.

      Anyway, I am sorry I am not more help in this regard. I recommend people join groups (lots on fb) and ask people there to get a variety of ideas, some of which might be helpful.

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