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Experiences with
D-bifunctional protein (DBP) deficiency
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No more earwax
It sounds weird, but I noticed in last year no more earwax. Does anyone else with PD have the same issue or know why this would happen? Dx 8 years ago, DBS 1/2023, only take c/l
It sounds weird, but I noticed in last year no more earwax. Does anyone else with PD have the same issue or know why this would happen? Dx 8 years ago, DBS 1/2023, only take c/l
Lbi1608
in
Cure Parkinson's
6 months ago
i know this is going to sound weird but…….
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
jeeves19
in
Cure Parkinson's
6 months ago
Iron Deficiency Help!
Hi. Back in January I was diagnosed with iron deficiency anaemia and was put on supplements for 3 months, and then to have a follow up blood test a month after finishing the supplements. My ferritin has come up from 5 to 47 (range 30-148) and I was just wondering what sort of response anyone else who
Hi. Back in January I was diagnosed with iron deficiency anaemia and was put on supplements for 3 months, and then to have a follow up blood test a month after finishing the supplements. My ferritin has come up from 5 to 47 (range 30-148) and I was just wondering what sort of response anyone else who
Hidden
in
Thyroid UK
1 year ago
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B1 Therapy #Case 2 *Andreia Peres
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
6 months ago
Personal insights into late stage PD thoughts
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
beehive23
in
Cure Parkinson's
6 months ago
B1 Therapy #Case 1 * Manuela Correia
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
7 months ago
17 hour flight
I have been invited to a wedding in Louisiana later this year. My RLS is still problematic but manageable at home with Buprenorphine and Pregabalin and walking around / standing up. I am doubtful about the 17 hours flights. I can't ever remember going that long without several attacks of RLS. I've
I have been invited to a wedding in Louisiana later this year. My RLS is still problematic but manageable at home with Buprenorphine and Pregabalin and walking around / standing up. I am doubtful about the 17 hours flights. I can't ever remember going that long without several attacks of RLS. I've
Biscuitface
in
Restless Legs Syndrome
1 year ago
On iron supplements but my ferritin did not increase
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
WhyAmISoTired
in
Thyroid UK
1 year ago
B1 and anti anxiety pills
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
JeanieBeanie
in
Cure Parkinson's
7 months ago
Let's share your DBS settings
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
limcheeese22
in
Cure Parkinson's
7 months ago
Results please
Im taking teva levothyroxine 75mcg and t3, 5mcg at morning with levo then 10mcg afternoon.My symptoms have greatly improved with the addition of t3, but having increasing problems with low stomach acid. Any advice will be most welcome 🌸🌸🌸🌸🌸🌸🌸🌸🌸🌸
Im taking teva levothyroxine 75mcg and t3, 5mcg at morning with levo then 10mcg afternoon.My symptoms have greatly improved with the addition of t3, but having increasing problems with low stomach acid. Any advice will be most welcome 🌸🌸🌸🌸🌸🌸🌸🌸🌸🌸
Geegee777
in
Thyroid UK
1 year ago
Iron tablets and T3 timing?
I'm trying to raise my low ferritin (33 at last test) and am taking ferrous sulphate twice a day (will be testing my levels again soon).I was previously taking my T3 meds once a day but am having a bit of trouble tolerating a recent 5mcg increase (was taking 10, now 15mcg) so I'd like to try splitting
I'm trying to raise my low ferritin (33 at last test) and am taking ferrous sulphate twice a day (will be testing my levels again soon).I was previously taking my T3 meds once a day but am having a bit of trouble tolerating a recent 5mcg increase (was taking 10, now 15mcg) so I'd like to try splitting
Smorzando
in
Thyroid UK
1 year ago
swelling around DBS battery 5 weeks after surgery
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
Nurse7
in
Cure Parkinson's
7 months ago
DBS energy
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
jeeves19
in
Cure Parkinson's
7 months ago
DBS journey
Hey Gang. I thought I’d post something as I’m aware that a few of you are following my story with a mind to seeing how it fits into your own life? So, turned on Friday, felt awful Saturday (as you know) better Sunday. But yesterday and today I had awful issues with my voice. The programmer had asked
Hey Gang. I thought I’d post something as I’m aware that a few of you are following my story with a mind to seeing how it fits into your own life? So, turned on Friday, felt awful Saturday (as you know) better Sunday. But yesterday and today I had awful issues with my voice. The programmer had asked
jeeves19
in
Cure Parkinson's
7 months ago
Foslevodopa-Foscarbidopa (Vyalev)
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
bcjlynne
in
Cure Parkinson's
7 months ago
DBS switch on news.
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
jeeves19
in
Cure Parkinson's
7 months ago
Pregnancy loss, results confusing?
My previous postshttps://healthunlocked.com/thyroiduk/posts/149381508/suboptimal-results-pregnancy-loss?responses=149386968 https://healthunlocked.com/thyroiduk/posts/149405041/recurrent-loss-and-thyroid-more-results?responses=149405541 Bit of a long story - tried to test my blood with monitor my health
My previous postshttps://healthunlocked.com/thyroiduk/posts/149381508/suboptimal-results-pregnancy-loss?responses=149386968 https://healthunlocked.com/thyroiduk/posts/149405041/recurrent-loss-and-thyroid-more-results?responses=149405541 Bit of a long story - tried to test my blood with monitor my health
staceedin
in
Thyroid UK
1 year ago
"BREAKTHROUGH" device approved by FDA for PD
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
PDWarrior1900
in
Cure Parkinson's
8 months ago
latest results please can you advise
Hello all please can you advise me on my latest results and your thoughts before I see my new Doc on the 24/4. I started new dose of Levothyroxine 100mcg on the 9/3 up from 75mcg. T3-4.40pmol/l ( 2.63-5.70) T4-16.20pmol/l (9.01-19.05) TSH-1.36miu/l (0.35-4.94) Vit B12- 236pg/ml (187-883) stopped
Hello all please can you advise me on my latest results and your thoughts before I see my new Doc on the 24/4. I started new dose of Levothyroxine 100mcg on the 9/3 up from 75mcg. T3-4.40pmol/l ( 2.63-5.70) T4-16.20pmol/l (9.01-19.05) TSH-1.36miu/l (0.35-4.94) Vit B12- 236pg/ml (187-883) stopped
Pooty
in
Thyroid UK
1 year ago
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