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Showing content with the highest reputation on 08/07/2021 in Posts

  1. @AlanK, the so called "normal range" on the 25 hydroxy D test is 30 to 120 ng/ml, however, the sweet spot for most seems to be in the 80 to 85 ng/ml range. I'm unaware of the values for the other tests Batch reccomends but I imagine that info is included in the D3 document in our Files section Dallas Denny
    2 points
  2. I find the excuse that servicing a cluster patient's O2 needs has been suddenly deemed "unprofitable" due to the virus situation absurd. While the situation has caused many true supply chain issues, I just can't buy this one. I'm thinking sometimes the virus is just a convenient excuse...... I really have a problem with a business acting like they are doing me a favor by taking my money for a product or service. No matter.... The links posted above will have you (hopefully) aborting in record time.
    2 points
  3. I see the Methyl folate is crossed out, so I do not need it? I don’t have CH, but NDPH. So basically same headache for 4 years with varying degrees of pain on a daily basis. Been under control at anywhere from a 1 to a 4 on my scale since February using LSD every 10 weeks or so. Do u guys think the regimen is the same? I never get a full day of pain free but enough very low levels to live. You guys gave been great since I started posting this week. Really appreciate the knowledge and compassion you all show for each other and towards me. Thank you ✌❤
    1 point
  4. agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you.
    1 point
  5. ....consider a welding hobby in your future if you get the boot....same stuff, different provider.... ....covid has messed with clusterheads O2 possibilities worldwide. besides the universal ignorance of CH already existing, it's a definite supply/regulatory issue in many places. in the US, it's likely not a supply issue. having difficulty believing it is unprofitable (a sale is a sale no matter what the use is for. whether insurance covered or self-pay (50/50 my "career") they made the exact same amount of money off me...shoot, i even picked up/returned tanks myself to save them $). more likely an excuse to avoid the hassles of dealing with folks who are not respiratory patients: we confuse them with our different needs, usage, erratic usage, and weird ailment in general. i don't know what the regs are for a valid script presented in an appropriate manner...but have seen the refusal so many times, in so many places, for so many reasons, that if present it doesn't seem to matter. if there is anyone out there who knows how to call bullshit on this, please share. rant over.... ....re the script for lpm....it really don't matter what the script says, BUY your own regulator (O2 shop leasing is exorbitant) and crank that puppy to exactly what you need. nobody else will know...or care! i wouldn't make a big deal about it with the O2 store if they are providing O2 with your current script....just make sure to keep a script up to date...one less reason to bump you (Lincare required yearly re-cert)... ...abso-friggin-lutely !.....the Clusterkit O2 mask is a Cadillac non-rebreather...which i whole heartedly endorse.... mine is a treasured possession. also have 3 or 4 Amazon purchased regulators of my own that cost less than $150 total. while we recommend 15-25+ lpm, and you might need even more, the specific number is less important than keeping the flow at whatever level keeps the bag full for the next breath... w/o wasted blow by....
    1 point
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