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Everything posted by Drummergirl

  1. Drummergirl

    PD and immune system response

    Dave, Thanks for your input on this. There needs to be more awareness given to this topic. We often read of PD patients who ultimately pass from complications such as infections, not directly from PD symptoms themselves. For the last 4 years I have had swings of flu-like symptoms, feeling run down, had strep 2-3 times a year. This is abnormal for me. After journaling these symptoms and such, it revealed that I felt great when I was on an antibiotic, (Specifically Amoxicillin) I would decline again post antibiotic. Upon my suggestion, they tested my immune system and it was low. I was referred to an Immunologists who ran numerous labs for 6 more months as she was stumped with the low and continued declining immunoglobulins levels. She ordered more detailed labs, some of these labs were mailed to the Mayo clinic. Their findings revealed my B cells are high, which typically points to a blood type cancer. specifically my CD19 cells, which are double the normal. Again thinking (Lymphoma). I was referred to Hematology/Oncology. They didn't have me under go a bone marrow because the CD19 cells were the only alarming number, and all my other blood labs are in the normal range. They too had no explanation for this. I have ben researching this a bit over the last several months. I have found other Pub med sites supporting that long term use of Carbidopa damages the immune system and should be replaced. Im saying this next part cautiously, as many on the forum take Clonazepam. I was also told by two physicians that long term use of Clonazepam suppresses ones immune system also since it effects every organ in the body. Stump, getting tested sure can't hurt. It's a simple blood test. Another interesting note; when I'm taking an antibiotic, I average 4 LESS doses DAILY of Carb/Levo which for me equals- 2 less 25/100 a day, since I take a 1/2 tablet.
  2. Drummergirl

    PD and immune system response

    Hi Stump, It's the carbidopa- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595290/ I have now have hypogammaglobulinanemia, Low IgG and IgM. I've been on a roller coaster of low grade infections and now Lyme's Disease...
  3. Drummergirl

    Cogentin for tremors

    Years ago I was rx'd Cogentin by the second Nuero. I was already taking a low dose of Carbo/Levo when he started me on Cogentin. We couldn't determine its effectiveness due to the other meds, so I discontinued taking a med w//o a known benefit. The second Neuro said if I had seen him first he would have started with Cogentin. His past patients had success using it early on.
  4. Does anyone have akathesia in their off? If so, how do you manage it?
  5. Drummergirl

    Akathesia, is this present in your off?

    I don't "sway" or rock when seated, there is still a movement tho, it goes to my feet and doesn't include my upper body. This may be a me thing because my tremors are in the legs, not arms. Thanks Sherrie for the info.
  6. Drummergirl

    CBD Oil

    I use CBD oil for sleep. I have had more success with it, then not. I can't say it works consistently. Like tonight, but worth trying. As far as tremor reduction; yes, if tremor is bought on due to stress, anxiousness rather then just "off time". But not so, if used in place of C/L.
  7. Drummergirl

    Where to get the best quality of Mucuna puriens?

    Marle222, Are you or had you been seen and treated by a Lyme's specialist before PD diagnosis?
  8. Drummergirl

    Akathesia, is this present in your off?

    I agree, I think the swaying is "mandatory". When I focus and think about every movement before I move, I can stop it, but it is so overwhelmingly just there, I can't sustain the non sway focus for too long. DG
  9. Drummergirl

    Akathesia, is this present in your off?

    The swaying I experience can occur when I'm washing dishes, standing in line at the store. I do believe this is a direct result of long time use of C/L. I would say dyskinesia. Akathisia for me is having to walk non-stop, & leg stretching, during my off time to relieve the pain in my shins. My tremors are lower legs. This also includes, rapid pulse, elevated BP, which is normally low and sweating. Many times I can hardly take a deep breath. I resemble someone experiencing the DT's... Gotta luv these drugs...
  10. Drummergirl

    Duopa Pump Users-

    I am scheduled for the Peg-J procedure June 14, with the titration programing starting a few days later, in case of stomach discomfort. Can you share your experiences and which carrier do you use most, what limitations, if any do you have when it comes to hiking, biking and swimming? Feeling overwhelmed after receiving the box of info from Abbvie, Thanks
  11. Drummergirl

    Duopa Pump Users-

    Hi Mihai, No, Insurance and big Pharma couldn't come to an agreement/contract for the med gel.. I tried the shot, Apokyn, to use as a rescue, but, I had an allergic reaction to it. I'm looking forward to the inhaler...can't get here soon enough.. Thanks for checking. Are you still pleased with it? will you go to the smaller, under the skin pump once it's available? Enjoy!
  12. Drummergirl

    inhaled levadopa

    I hear yah MM....I have to eat constantly just to maintain, let alone gain weight. Ive been trying to gain for 2 1/2 years, but mo can do....
  13. Drummergirl

    inhaled levadopa

    YAHOO!!! Finally.....
  14. Drummergirl

    CBD Oil--Does This Work?

    Thank you Peace!
  15. Drummergirl

    Music and Parkinson's Disease

    Drummer here....that's how I noticed my first symptoms. My right foot, using the bass drum pedal wanted to double or triple beats... I feel better mentally and physically when I listen and play.
  16. Drummergirl

    CBD Oil--Does This Work?

    Where did you order it from Bill BRNC?
  17. Drummergirl

    CBD Oil--Does This Work?

    Murray, Where did you purchase the CBD oil from? I just tried some today that is 0%THC. It is oderless and tasteless (like me). I feel great already at only a half drop. I reduced my C/L by 1/3 just because I feared taking too much in combination. I think I am going to like this
  18. Drummergirl

    Akathesia, is this present in your off?

    Not yet....
  19. Drummergirl

    Akathesia, is this present in your off?

    Thank you all for your replies. Even after 22 years, I still find it interesting how different we all can be and to what degree. I’M DISMAYED THAT DOC’S RARLEY DISCUSS THIS SYMPTOM WITH THEIR PATIENTS, ESPECIALLY THOSE OF US experiencing these disabling sx. It’s an area they do not fully understand or do not want to. Here is how I found out I have SEVERE AKATHISIA. A couple of weeks ago I went to my Neuro appt. in my off state. This was the first time he had seen me in my off. During my prior visits, my leg tremors were not present, or barely, had some dyskinesia. My walk has always been a quick pace. His comments have been: "you respond incredibly well to Levodopa! in small dosages" but frequent, as I can become over med easy. My complaint has been, "how do I go from almost no sx, to such severe leg to full body tremors, nothing in between.. or (quaking) that consumes my entire body. So bad that I cannot sit, lie or even stand still. During this 3 ½ hr off time appt. several attemps were made to take my BP, but I couldn’t stand still long enough. As I started to return to on state; they were able to get a very high BP and high pulse. Sweat drips from my face, I can hardly catch my breath. I have no choice but to walk/pace, this is the only way I can tolerate it or get some relief. I lost 2 lbs. in the 3 ½ hours I was there. This has been my off for the last for 2 + years. Needless to say, I hate OFF time!! Neuro's summary following my visit; SEVERE Akathesia...He is the first doc, out of 5, (4 at one time to determine what I was experiencing, and none reported this) that put a name to my debilitating sx. I must say, I was alarmed by this, but yet releived that finally I knew what I am experiencing. I still have many questions for him; will it always be my off, does akathesia differ in pwp than those w/o PD and many more….. My research on Akathisia is; it may or may not be a component of PD, whether or not that component is from PD meds remains uncertain. It can also be from other medications, the “older anti-psychotic drugs and others. I have never been on those. However, I was on Clonazepam .5mg for 9 years. Tapered off 21/2 yrs. ago. With months of withdrawal..however, it can be used to help akathesia, but not long term as it has it’s own dependency issues. So more questions for him on that as well. PD...always a challenge~
  20. Drummergirl

    A great site for PD information...

    This is a great PD site! Dr Laurie Mischley's video on nutrition is awesome! Her health care practice is the model of how health care should be.... https://scienceofparkinsons.com/2017/09/18/food/
  21. Drummergirl

    Water quality

    I also have a Big Berkey filter. It's great!
  22. Drummergirl

    The Importance of Copper in Neurological Function

    Concentrace trace mineral drops contain 72 trace minerals that include copper. They are used by most natural path MD's. https://traceminerals.com/concentrace-trace-mineral-drops/
  23. Drummergirl


    Hi Italy, I have been researching stem cell for PD for a while now. There are reputable physicians/clinics, not all are frauds. Here is one my PT met during a seminar she attended and I spoke with them. http://qigenix.com/ There also is a website that list stem cell clinics/physicians, as well as a blog. www.ipscell.com. I think the main reason stem cell hasn't been discussed or supported is, the cost, and the long term results of treatment haven't been yet been available. Seems like the majority of people have good results for several months, but info isn't there beyond this. Also, depending on the stem cell process, which there are many, it may take up to several treatments for results. At 10K plus, the average person can't afford the treatment. If it was 80% + guaranteed to work , it would be worth it to me! They will get there in time....
  24. Drummergirl

    Duopa Pump Users-

    Hi Mihai, Accredo and my insurance company do not have a contract in place, the pump was approved, but not the medication. Doesnt make sense, and it's been a roller coaster trying to get all the players to agree. Disappointing...so at this point it's on hold. Im glad it's going well for you now. Why was the tube kinking at night? Your sleeping position? Thank you,
  25. Drummergirl

    Duopa Pump Users-

    Hi Beau's mom, Thank you for responding. I don't think many forum members are using the pump. Not sure why... I have talked with one current user. She is a frequent traveler, but not active physically. The other person I chose was active, but not available to participate as a mentor for awhile. The Abbvie case manager nurse is very helpful. I had not heard of the two pharmacies either. I ended up with Acreedo, I've had 2 good experiences (communicating )and 1 not so good with them so far. Which pump carrier do you use?