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Waywrd1

Plain Old Levodopa- Still Available Anywhere?

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Mark-

Noticed something unusual at my last haircut.  I've been taking the blue 10/100's since Christmas, as a dye allergy test.  Weirdly, I tolerate the 10/100 better than I ever did the 25/100.  And, my hair has started to regrow.  This made everyone suspicious of the Urea Cycle possibility but also that I'm allergic/can't process the carbidopa.  Does anyone still sell plain levodopa anymore, in the US or even Internationally?

Waywrd1

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As far as I am aware there is no pharmaceutical company producing Levodopa anymore. After a quick search the only products I could find were via Amazon in the form of Pure Levodopa Mucuna Pruriens available through a variety manufactures. Since this is not considered a prescription is does not have to go through the rigorous testing of prescription medications. Also, the amount of this product needed to obtain the end result of relief of symptoms is umknown and will vary from person to person. It is also unknown if any, or all, of this product is able to cross the Blood-Brain-Barrier and work on the Dopamine stores in the Substantia Nigra portion of the brain.

I hope this helps and please keep me posted.

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Quick update- still looking into this.  Weight loss continues, 20-25 lbs.  Right Atrium is still enlarged. Not allergic to Carbidopa, onto Mayo Gastro (Unintended Weight Loss practice) to see if it's a liver/enzyme/neurotransmitter metabolites problem.

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Waywrd,

As always, thanks for the update because you know I am your Pharmacist. By chance did the check your QT Wave in your heart? I have been trying to piece together some information about a possible link between prolonged QT wave and Parkinson's Patients, which can cause them to faint.

as always, I hope this helps and please keep me posted.

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The C/L saga continues.... and I'm still overachieving with side effects.  Weight is still off  20-25lbs.   As of September 2016,  I was in full menopause at the age of 41 and 65% of my hair had fallen out- that's how hard it is on my body.   By March on the lower dose, my hair started regrowing and my hormones are totally back to normal.  At Christmas I stopped the 25/100 and taking 10/100's, and immediately 70% of the side effects are greatly reduced.  Still have extreme fatigue though.   Cannot tolerate Comtan with the 10/100 to get more C/L through.  Caused yet another ER attack on new years eve no less.

Holter in March confirmed my bradycardia but I also now have tachycardia! HR is still up to 70-100 all day every day, when it never used to go over 70.  I've got my EEG's pre and post PD if you want to take a peek. Echo had originally indicated right ventricle. Cardiac MRI confirmed an enlarged right atrium, but no QT wave.  Specialist at the best heart hospital in the state (who only deals with right side heart issues) said they are always, always because of a functional issue/obstruction/drug intolerance affecting the lungs, liver, heart, kidneys or endo system.  He also didn't like my off kilter electrolytes, chronically low/ultra low potassium, high /very high chloride and amino acids which are also imbalanced. 

Saw Mayo drug allergists last week.  They said it's acting more like a hyper sensitivity/toxicity than an allergy.   Tomorrow I go back to Mayo to see Gastro for weight loss/liver review (which has all been "normal" with local specialists.)....  if not them, then I'm onto the Endo, Kidney people.

 

 

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oh, and I still have not energy in the muscles themselves.  My legs are always like after a hard run- quivering.

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Waywrd,

I am sorry to hear about your current situation. I know you are a fighter and will always find the brighter side of any situation. One of the things that has impressed me the most is that you are taking this step by step, organ system by organ system. That is hoe it needs to be done.

If there is ant thing I can do, please do not hesitate to contact me.

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Mark- I must thank you for encouraging me!  Your support is one of the things that's kept me going through the last 18 months, and to keep forcing the big M here in Minnesota do their d*amned job! 

I had an interesting experience today.  My internist is an MD but he's got his boards in integrative medicine, so he's a thinker. He gave me beta-blockers- he said the anxiety might also be reduced simply because it would slow my HR.  He wants to see if they make me feel better.  So, I started them today and felt 95% normal for 6+ hours!!  The C/L is definitely seriously screwing with my metabolism/heart rate.  Interestingly, the extreme muscle fatigue was also 80% reduced. I'm going to continue to take 1/2 pill for a week so see if I still get the same effect.

Obviously, I need to follow up with Endocrinology (who refused to give me the beta blockers a YEAR ago (because it was unlikely that the meds could cause this extreme of a reaction.  Let me tell you, I now have a major issue with those people....) and will continue the diagnostic with Gastro for unintended weight loss/rt side heart.  Do you think I need to continue with kidney?

Waywrd1

 

 

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Waywrd,

I discussed with someone in one of my forums about the use of Beta Blockers (Inderal-Propranolol) for use in PD patients for those exact reasons. I thought it was with you many moons ago, but I could be wrong. Like I have mentioned in past posts, many medications (ie. antidepressants in particular) can have multiple uses besides the use for depression. They can be used for anxiety, racing heart rate, nerve pain, OCD, phobias, PTSD, essential tremors, and bulimia to name a few.

Please keep me posted. I to am a thinker and one who does not even see the box.

Good luck.

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Hey, so the Beta Blockers ended up making me feel poopy by day 4.  Bummer.  It was nice while it lasted.  And, for me, remeron is useless for sleep....  Gave some some sub-Q fat, so that helps a little but that's just a bandaid.  On the Sleep front I need a hypnotic as strong as ambien, but without the active/violent dreams and horrible withdrawal.  Any ideas?

Gastro appt next next week to start looking into my issues- upper and lower GI.  Not worried about them at all, done both before.  I also got a referral to the kidney area for my chronic low potassium.  Luckily got assigned to the head of the clinic for Electrolyte and Hypertension Disorders down at the big M.  Hope they find something.....

And, I saw this and thought of you. https://news.mayomedicallaboratories.com/2017/07/20/large-scale-study-outcomes-long-qt-syndrome-patients-treated-specialty-center-better/?linkId=39950877

 

 

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I also saw that article and I believe I may be on to something. I have asked several Neurologists and Movement Disorder Specialists to have the test run to check for prolonged QT wave issue. So far, even though the sample size if very small, it has shown that about 80% of the PD patients tested had a prolonged QT wave issue. I will keep pushing because this could help us find out if it is truly a fall that ends a PD patients life or, if they pass out and then hit their head causing death. Choking and falling are the 2 top causes of death in PD.

As far as the sleep issue, it is one I am very close to. After years on hypnotic medication, I have tapered my self off of them (with the help of my Neurologist) about 3 months ago. After I tapered down to a low dose hypnotic I started on a low dose of Trazadone. Of course the dose had to be increased after I was completely off of the hypnotic, but the Trazadone has really helped. I am able to get a full night sleep and not feel groggy or foggy the next morning. Trazadone is classified as an antidepressant, but most of the prescriptions I see are for the use of sleep.

Another medication that I tried, but failed, was Seroquel. It did take care of the running mind issues, but did not help much with sleep.

I have been using meditation to help clear my mind before bed. It is something that I have had to work really hard with a therapist to bring me to the "here and now." I realized that the running mind had mostly to do with things that were out of my control and so meditation and positive thoughts, mainly bringing me to think of just this point in time, has worked wonders.

I have also added a breathing technique that has been proven, in some people, to put them to sleep in less that 5 minutes. I am not sure if I have achieved that yet, but this breathing technique can also be used to help with anxiety. It is called the 4-8-7 breathing technique. You have to inhale deeply through your nose for a count of 4, hold that for a count of 8, and exhale through your mouth for a count of 7. It does take a little bit of time to achieve, but this technique does bring you to a point of focus on the breathing and it will also lower your blood pressure and heart rate.

I hope this help and, as always, keep me posted. 

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