Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


Waywrd1 last won the day on September 17 2016

Waywrd1 had the most liked content!

Community Reputation

49 Excellent

About Waywrd1

  • Rank
    Advanced Member

Profile Information

  • Gender
    Not Telling

Recent Profile Visitors

1,341 profile views
  1. Waywrd1

    Muscle atrophy on one side? Misdiagnosed?

    I lost 30lbs effortlessly in the first 5 months of treatment on C/L- 25% of my body weight. I'm still off about 20-25 depending on the week, and how effective the anti-histamines and compounded c/l is working. It's not been an even exchange of compounded medication versus the commercial stuff.
  2. Waywrd1

    Pharmacy refuses to fill prescribed generic

    If you get an antibiotic at retail, for an infection, how are you reimbursed by your insurance? If I go to retail, my insurance applies the cost of retail medication to my deductible and/or coinsurance exactly as if it were a doctors office charges, or lab studies. So, I can get whatever I want at retail and the insurance company can't tell me no. And, ultimately the plan sponsor can make an exception to cover whatever they want.
  3. Mark, Hope you are totally healed up!! Is there a way to find out who makes the raw ingredient Carbidopa and levodopa for Mylan, versus Teva or Actavis Elizabeth? The !(&%)# companies won't tell me... I currently take 15mg carbidopa and 150mg of levodopa- 1/3 is compounded, and the rest is a commercial 10-100 from mylan. I ask because the carbidopa and/or the levodopa used in my capsules are giving me some wicked side effects if I replace more than 1/3 of each dose with compounded versus commercial... This is making the switch to compounded for my MCAS impossible. I'm stuck on stage 1- identify your triggers.... My compounder can buy ingredients from anyone, so it might as well be from the same companies we already know work better(Mylan) than anything else thus far. And, as a complete aside- the docs said I might try the branded sinemet. Just to see what that does. Other than that, they're out of ideas. Thanks! Waywrd1
  4. Waywrd1

    Stomach acid and meds

    How would a high acid state in my stomach influence a compounded capsule of Carbidopa and Levodopa? Wouldn't the absorption and effect be even faster/harder than normal commercial meds- no cellulose to slow it down? I know I run toward the acid side of things- ulcers from stress at work at 24 lasting about a year, and I've taken a course of acid reflux a time or two in the last 15 years. Combine that with a strange electrolyte disorder (high calcium, low potassium) it makes me wonder if part of my medication issues is my stomach but overall blood and body ph.
  5. I've had nothing but problems with the meds! It took almost 4 months of increasing the dose and decreasing the duration to "find my dose", and the dyskenesias showed up about 6-8 months. I take 1600mg a day, in 6 doses. I had immediate reactions to C/L. Mayo told me they'd never seen side effects so bad. The goofy part is that the C/L works perfectly, and I also have every side effect except the black box warnings. The dyskenesias showed up about 6-8 months. In the first 5 months of C/L I lost 30 lbs, wicked vertigo, dizziness, orthostatic hypotension, constant sneezing, stuffed up sinuses, headaches, earaches, increased heart rate/BP, bloated, gassy, upset stomach, severe insomnia, Throat fuzzy, irritated. Constantly clearing it, Throat dries out even if sticky, coughing, any sensation of hunger totally disappeared. My voice is dry, hoarse, rough, gravelly sounding. I get crazy easy bruises which last forever and any wounds are very slow to heal. Lost 65% of my hair, massive fatigue and weakness, cardiac issues... It was nuts. I took the the yellow 25-100 for a year, but the switched to the 10-100 which helped the intensity of the symptoms. I've been on the10-100 ever since, and I'm not 2.5 years in. I've always been medication sensitive but it wasn't until January of this year that I finally knew why it was so bad- I have Mast Cell Activation Syndrome, most people know it from Asthma or hot spots in dogs. In MCAS your immune system is hyperactive, and doesn't identify what to do with medication properly. The mast cells (which are in every cell of your body) flood your body with histamine in an effort to get rid of it. It can be just as dangerous as a classic Ig-A or Ig-E allergy- you get the same anaphylactic response. My mast cell triggers are the yellow and blue dyes in the meds, along with some of the other fillers and binders. So, I now have custom compounded medication and trials to figure out what exactly in the C/L is also an issue. My Neurologist said in 35 years of practice- he'd seen one other patient who couldn't tollerate the yellow 25-100s, but did fine on the blue 10-100. He'd also seen one European patient who took Madopar in Europe (which uses beneserazide) who couldn't tolerate the American version with Carbidopa.
  6. Waywrd1

    New to Sinemet

    They could also do pharmacogenetic testing to see how you metabolize drugs- One Ome, and some others do it. They don't specifically address carbidopa/levodopa but they do a whole lot of other meds PWP end up on. Nice to know if you metabolize it so quickly that it doesn't have the chance to work, or you don't process it at all so it just builds into a toxic soup. I never needed daily meds before PD, and was known to be hypersensitive. My testing has literally saved my life three times since starting C/L. Insurance typically covers it and it's only $350 or so if you have to pay for it out of pocket.
  7. Waywrd1

    Muscle atrophy on one side? Misdiagnosed?

    Dr. Okun- I had a good bit of muscle atrophy on my left side (and PD) side prior to my diagnosis of YOPD- mostly in my left hand and foot. The muscle mass has mostly returned with being able to take C/L, and move more effectively. Does effective C/L therapy rule out hemi-atrophy hemiparkinsonism? On another note: the bizarre weight loss has been sustained- it takes 15mg of mirtazapine to keep any weight on me at all. I'm still floating around 125 (down from 147). I've finally gotten permanent exceptions for compounded C/L so I can now do trials to see if the weight loss is due to disruption in my gut from the Mast Cell Activation Syndrome. My hair started to regrow, so the working theory is that once I finally get through H1 and H2 antihistamine trials, lower overall blood histamine/histadine levels will stop overheating my metabolism and eventually lead to some weight gain. There are some shockingly similar problems in the gut of PD and MCAS. Dr. Afrin has a book- Never Bet Against the Occam. Thanks!!
  8. Waywrd1


    Mark- I was digging around and found this on long QT and thought you may like to see just how many PD drugs are on the list. I've got the electrolyte imbalance, bradycardia, gender, some of these drugs and occasional ectopic beats but nothing "official" is wrong. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110870/ www.qtdrugs.org
  9. 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
  10. 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.
  11. 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
  12. Waywrd1

    Mylan C/L On Back Order?

    I was told that CVS uses a different wholesaler than Walgreens and Costco, so check them out.
  13. 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.
  14. 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
  15. 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!!