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Drummergirl

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Drummergirl last won the day on September 21 2017

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About Drummergirl

  • Rank
    Advanced Member
  • Birthday 09/06/1960

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  • Gender
    Female
  • Location
    White River Jct. Vermont
  • Interests
    Spending time outdoors, hiking, snowshoeing. My dogs, my FAMILY, working out, drumming.

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  1. Drummergirl

    For those that think C/L causes Dyskinisia ?

    My sister is a respiratory therapists and works in the sleep lab. She has seen non-PD patients taking C/L for restless legs, some have developed uncontrollable movements, (Dyskinesias). I was on C/L for 20-21 years before dyskinesia began. Everyone's different, diet plays a significant role (meds absorption in the gut) and there are different types of PD as well.
  2. Drummergirl

    Lymes Disease Mimics PD Symptoms

    Superdecooper, yes I still drum! Hey Bobbie, LD can be really difficult to dx. So many docs do not believe in chronic LD. That's why it is key to seeing a Lyme's doc. Initially, differentiating between PD and LD symptoms was challenging, but now not so. I now know the triggers for LD, such as damp days that bring out molds, any insect bites, sweets and alcohol are some of those. With LD treatment, most of these symptoms lessen or go away. When LD is flaring, it worsens PD symptoms. I've also found that the LD treatments have lessened my PD symptoms, which results in less PD meds.
  3. Drummergirl

    For those that think C/L causes Dyskinisia ?

    No doubt in my mind that c/l can cause dyskinesia.
  4. Drummergirl

    Lymes Disease Mimics PD Symptoms

    HI Bobbie, I have Lyme's as well as PD. Have had PD for 24 yrs, Lyme's 4 yrs. and have had 2 Lyme re-infections. I am currently being treated by a Naturopath Lyme Specialist. The symptoms for me are quite different. However, when Lyme's is flaring, my PD tremors increase with intensity. The neurological Lyme's symptoms for me are: repetitive eye blinking spells, tinnitis, repetitive thinking, full body shivering tremors, vision is fuzzy, one or both eyes can have floaters. Trouble talking, finding words. Sleep is difficult, my body can't get comfy. The physical part: pain in my shins, knees, wrists, feet, and feet crack,(noise) bottoms are sore, tender glands, sore throat, GERD, stomach pain and bowel issues. Muscle twitching. Increased thirst. Thats the bulk of symptoms. Take care,
  5. Drummergirl

    CBD Oil

    Lahdedah, I agree with you on the Rytary drunk is ok, but not so with the marijuana.
  6. Drummergirl

    PD and immune system response

    HI guys, Sorry for my delay in responding. I haven't been on here consistently in the last few months. Stump- The lab costs was $1600. This probably varies from one hospital to another. It should be an annual test done as preventative for those with PD. It seems we are "forgotten" when it comes to preventative/long term side effect care. I feel anyone diagnosed with PD should also see a PD nutritionist as part of the normal care. Afroney, that is scary #13....I am avoiding having the pump because of the increased chance of infection, and NO surgery for me unless it's dire need.....
  7. 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.
  8. 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...
  9. 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.
  10. 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.
  11. 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.
  12. 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?
  13. 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
  14. 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...
  15. 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!
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