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Waywrd1 last won the day on September 17 2016

Waywrd1 had the most liked content!

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About Waywrd1

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  1. Mark- This is pretty stunning, in a good way. The best fail ever?!? Dr. Larry Afrin diagnosed (per current peer review guidelines) that I have primary Mast Cell Activation Syndrome. In addition to that, he identified that two gene's on my pharmacogenetic testing are supposed to remove histamines and other damaging things like cortisol are moderately to severely impaired, which exacerbate the MCAS. So not only do I make to much histamine, I can't get rid of it either. I'm overachieving even in my underachievement. That's why medications, contrast and anesthesia have been such a problem my whole life. And lets just say that the big fancy M medical center here COMPLETELY missed this. UTTERLY and COMPLETELY missed it- in 13 specialties missed it. This is why all of us need to get a second opinion!!!!!So simple, yet so hard to find. Now, onto excipient exclusion testing. If I may, I might need help chasing down ingredients. Big pharma doesn't like to talk to patients about ingredients that might be killing them. Waywrd1
  2. Waywrd1

    Welcome to the club

    Some hand out the Full PD diagnosis right away, some wait until after a positive drug trial on the parkinsons's meds- like Azilect, carbidopa-levodopa. Really just depends on your doctors philosophy, and the very real fact that PD is frequently misdiagnosed in the young but the rate rises to about 85% if you've had a DatScan. If you take the drugs and get a response, you're most in the club. The DatScan shows the architecture of your dopamine uptake system, and by repeating in a year, if it is PD it should so reduced uptake in that time... I got the full PD after the drug trial, and just so you know, the diagosis code doesn't distinguish between Young On-set and Older. It's just G20- Parkinson's Disease.
  3. Waywrd1

    Mylan C/L On Back Order?

    My regular Costco is back in stock. I found out that CVS has it's suppy independent from Costco and Walgreens. Apparently they stockpiled ALOT of stuff for the Target purchase. If you're having supply issues, check with them first. An interesting note about Teva and it's Activas purchase. https://www.wsj.com/articles/teva-pharmaceutical-to-cut-14-000-jobs-1513255533
  4. Waywrd1

    Mylan C/L On Back Order?

    I was told that CVS uses a different wholesaler than Walgreens and Costco, so check them out.
  5. Waywrd1

    Anesthesia and C/L

    I currently take the blue 10-100 and purple 50/200ER: The "Good" generic is Mylan. (Well, make that less reactive anyway.) The "Bad" generic is Activas Elizabeth. (And, is horribly reactive.) My PHD/MDS Neuro said he's seen 2 patients over the years who had issues with the dye, and 1 with the carbidopa. My U of MN MDS Neuro- has an Native American patient who is allergic to almost everything in the pills so they have to take velvet bean supplements exclusively. Tricky as hell but it can be done.
  6. Waywrd1

    Eyesight Issues

    Dr. Okun, The side effects are still so bad on the 10/100 that my insurance company approved a 6 month trial of compounded straight up old fashioned levodopa. Kind of funny to be regressing along the PD meds path. I've never had a lick of nausea on either the 25/100 or the 10/100's, so this will be interesting. If I can't tolerate the levodopa, next step is trialing the European Prolopa/Madopar. If both fail, then the mucuna pruriens. My new neuro has a native american patient who is allergic to everything, so they're stuck with just mucuna pruriens. Said it's tricky, but it can be done. So, tomorrow I start titrating the levodopa into my meds schedule. One dose a day, every 3 to 5 days. Do you have any old school tricks for managing any potential nausea? Waywrd1
  7. Anyone else having problems getting a refill? Mylan told me today that 25/100 and 50/200 ER are back ordered since early Oct, resupply "maybe" the week of Nov 13th. 10/100 has been back ordered since late Sept, resupply in "maybe" mid-Dec. Call your pharmacist now!!
  8. Waywrd1

    Anesthesia and C/L

    This may also explain why I need such a huge dose. My brain is on inflammation overdose. That description is dead on. They know it's not a traditional allergy, but a moderate/severe hypersensitivity that builds over 2-3 months (on 25-100). When it gets to toxic levels, then I get the breathing attack, go to the ER, get a steroid, feel better for 2-3 months but can feel everything building again. Not as bad on the 10-100 but the same basic pattern is now 4-6 months. The ENT diagnosed allergic rhinitus, said my immediate sinus reactions when I started C/L and that all of the symptoms are still with me but lower in intensity, matching the C/L ratio change made him strongly suspect asthma but also mast cell activation syndrome. Said the two tend to follow each other around, and 50% of his hypersensitive patients with one have the other. The U of MN had one of the world authorities on Mast Cells. (He moved to NY. Thankfully, he's 30 minutes from a friends house.) I saw the doc's pharmacist who is still at the U- she said the sinus/bronchial aspect reminds her strongly of the patients she treated with him. The ENT said my immediate sinus reactions when I started C/L and that all of the symptoms are still with me but lower in intensity, matching the C/L ratio change made it more mast cell activation syndrome. My local Neuro is a PHD.MD and he's had a couple patients over the years where it was either the dye or the carbidopa. My ENT and Sleep neuro all said the same thing- it's either carbidopa, dye, a filler or a binder. They also said there are known instances of diabetics being allergic to synthetic insulin so could be the levodopa, but a whole lot less likely than the Carb/PD.
  9. Waywrd1

    Need your opinion...on Retirement disability

    The primary aldosteronism really doesn't help things, and making sure your meds are optimzed between the kidney and neuro worlds is huge. You may need to change docs in order to get two of them in the same medical center/practice who "get" it. I've had to do that dance myself, and it's easier if everyone can see the same set of records.
  10. Waywrd1

    Newly Diagnosed and scared

    Not exactly the club anyone wants to join, but welcome! I was in the class of 2016. Symptomatic since 37/38, unofficial at 40, formal diagnosis a month after my 41st birthday. It takes awhile to wrap your head around this one. Getting your meds dialed in, as does exercise. It can improve your outlook the most, and healthy eating.
  11. Waywrd1

    Official diagnosis today

    I've tested negative for all known PD genes. Women tend to get their diagnosis the hard way- all too often it's chalked up to the "Hysterical Woman" diagnosis, instead of taking patients at face level. I had symptoms since 38, formally diagnosed one month after my 41st birthday. When you're ready, check out "Parkinson's Diva" by Maria de Leon, MD. She's an MDS who was diagnosed with PD. Lots of Dr.s will tell you being a woman doesn't change anything for meds- but that's complete BS. A tiny 100 pound man woudn't respond the same on a meds dosage of anything that a 6'5", 350lb man would, so why would a tiny woman? Your gut instinct was right, remember that!!
  12. Waywrd1

    Newly Diagnosed - Some Atypical Symptoms

    Atypical was on my plate for almost a year, so I know how you feel! It was ultimately ruled out with two things. It took a long time for me to find "my" carbidopa/levodopa dose. What "your" dose is 100% up to you- it's whatever it takes to reduce or eliminate the symptoms (to a level that you are comfortable with. There is no magic dose calculation for anyone. I got 100% of the intended effect of the C/L, and 100% of the side effects but the meds didn't last very long. Eventually, it settled into my dose being pretty big with a short duration (3 hours) so finding it took almost 6 months- 1600 mg a day of C/L, in 8 doses. . Once I had the consistent duration, they looked at how effective it was. I was still at 100% of the responsiveness to the meds and 80% of the side effects. Big doses are more common in Young Onset, and any monthly hormonal fluctuation seem to impact meds in women. Not that there is any large volume of research specific to women... If you can't establish a dose that works for you over a couple of months, you could be tested for autonomic dysfunction. That would help rule out some of the Atypicals. The testing can be less reliable in early stages of the disease, so you'd want to go to a center with lots of experience. Autonomic dysfunction evaluation is not for rookies! I was ruled out of autonomic dysfunction using the tilt table test, and the sudomotor testing.
  13. Waywrd1

    Eyesight Issues

    I switched from the 25/100 to the 10/100 right after this post, and had about a 50% reduction in the intensity of the all the side effects I was experiencing (swollen sinuses, thick white mucus, vertigo, dizziness, eye sight issues, hair loss reversed and started growing again, and intermittent breathing attacks. ) Although the enlarged right atrium, 25 lb weight loss was slowed with 15mg daily of Mirtazapine, the crushing physical fatigue is still with me. The muscles feel like working out on a empty stomach- no fuel to power the muscles with. Now, almost a year later, they're thinking my unusually bad meds reaction is the C/L causing a severe allergic Asthma/Rhinitis or a Mast Cell Activation.
  14. Waywrd1

    Anesthesia and C/L

    I ask because I had a wicked BAD reaction to ativan- granted the fool overdosed me (4mg in 15 minutes) but even so it was unprecidented. As you know, since starting C/L I have had persistent issues with my sinuses- swelled almost completely closed with thick, white mucus that looks like Elmer’s White Glue. Constant sneezing, with a two year headache and earache. Dry scratchy throat, constant coughing, wheezing and weak gravelly voice. The symptoms did reduce but not completely resolve when I went to the 10/100 formulation back in January. Because I’ve been cleared for a classic allergy, I went to an ENT for the constant sinus headaches and ear aches. After the nasal topical anesthetic, the difference was startling. I could breathe freely for the first time since staring Carbidopa/Levodopa. But, my sinuses were still so inflamed the doc couldn’t pass the mini scope through at the first turbinate. He agreed with the recent GI work up- it isn’t an esophageal reflux situation. Ultimately, he feels it is a hypersensitive Allergic Rhinitis caused by the C/L and based off the symptom reduction when I made the dosage change. The interesting part is why Doctor thinks the persistent sinus issues and the serious hyperventilation during my intermittent “attacks” suggest drug induced asthma and that his hypersensitive/asthmatic patients tend to have underlying mast cell problems. The two issues tend to follow each other around. What do you think of the Asthma/Mast Cell theory??
  15. Waywrd1

    Anesthesia and C/L

    Mark, When you go for procedures where some level of anesthesia will be administered, are the anesthetic dosages reduced to reflect the influence of a PWP C/L load? I would think that you'd get less- they tell you not to drink on it for heavens sake, let alone Benzo's.... I take 1600mg of C/L a day: 2- 10/100 6xd 1/2 of 50/200 Cr at 6am 1/2 of 50/200 Cr at 3pm 1- 50-200 CR at bed. Thanks, Waywrd1