▲ 0 r/ADPKD

Has anyone in stage 1 pkd with perfect kidney function had to take prednisone taper for anything?

Just curious if it had any negative impacts or positive impacts? I know prednisone can impact blood pressure and blood sugar. I have to soon to do a 6 week taper so wanted to see everyone's experienes before I start it.

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u/Independent_You7902 — 1 day ago
▲ 1 r/iPhone13ProMax+1 crossposts

What to do when my touchscreen completely unresponsive for iphone13 promax?

I dropped my phone in water and now my iphone 13 promax touchscreen is completely unresponsive. This is my only Apple device. I tried to restart it but I am not able to "slide to power off" because the touchscreen doesn't work.

Will they be able to help me at apple store?

Even if I buy a new iPhone, I am not even able to do the 2 step authentication so I am completely blocked right now.

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u/Independent_You7902 — 2 days ago

Drive from West Dublin to UCSF Mission for Wednesday morning appointment at 9am?

Hi guys any tips on what time to leave assuming that I need to be at UCSF Mission by 9am? I assume the traffic would be a nightmare so want to gauge how early I should leave?

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u/Independent_You7902 — 10 days ago

For teaching hospitals like UCSF and Stanford, have you been able to ask to see the doctor only and request no trainees?

My preference is to see the doctor only in my appointment and I am not sure if they will allow it. The phone assistant said that is not possible but the doctors usually have been ok with it in the past from my experience.

Even more importantly, if there is procedure/surgery, can we ask that the doctor drives it fully? I am aware that they sometimes need help and that is understandable but would prefer the main doctor doing the bulk of the procedure/surgery?

What have people's experiences been on this?

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u/Independent_You7902 — 14 days ago

For teaching hospitals like UCSF and Stanford, have you been able to ask to see the doctor only and request no trainees?

My preference is to see the doctor only in my appointment and I am not sure if they will allow it. The phone assistant said that is not possible but the doctors usually have been ok with it in the past from my experience.

Even more importantly, if there is procedure/surgery, can we ask that the doctor drives it fully? I am aware that they sometimes need help and that is understandable but would prefer the main doctor doing the bulk of the procedure/surgery?

What have people's experiences been on this?

reddit.com
u/Independent_You7902 — 14 days ago

Ideas for Covid and Covid Vaccine Detox?

I'm 38 year old male and I got a vitreous hemorrhage completely out of the blue after the covid vaccine in 2021. My ophthalmologist and retinal specialist says it may or may not be related to the vaccine and that long term covid and vaccine side effects are currently being further researched. However, I personally believe it is linked because I also got neuropathy in the feet and brain fog since. I believe the spike protein has most likely caused me these issues since they are all blood vessel related and microclotting has been associated with covid vaccine for some and is being researched more.

From what I can find so far the best vaccine spike protein detox are the following: Nattokianse, Bromelain, Curcumin, Lumbrokinase, Serrapeptase, Green Tea Extract.

Is there any other ideas that I might lookk int for detox? Has anyone had issues and successfully detoxed and seen their symptoms resolve?

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u/Independent_You7902 — 16 days ago

Protocols on Covid and Covid Vaccine Detox?

I'm 38 year old male and I got a vitreous hemorrhage completely out of the blue after the covid vaccine in 2021. My ophthalmologist and retinal specialist says it may or may not be related to the vaccine and that long term covid and vaccine side effects are currently being further researched. However, I personally believe it is linked because I also got neuropathy in the feet and brain fog since. I believe the spike protein has most likely caused me these issues since they are all blood vessel related and microclotting has been associated with covid vaccine for some and is being researched more.

From what I can find so far the best vaccine spike protein detox are the following: Nattokianse, Bromelain, Curcumin, Lumbrokinase, Serrapeptase, Green Tea Extract.

Is there any other ideas that I might lookk int for detox? Has anyone had issues and successfully detoxed and seen their symptoms resolve?

reddit.com
u/Independent_You7902 — 16 days ago

Developed a vitreous hemorrhage after Covid Vaccine

I'm 38 year old male and I got a vitreous hemorrhage completely out of the blue after the covid vaccine in 2021. My ophthalmologist and retinal specialist says it may or may not be related to the vaccine. However, I personally believe it is linked because I also got neuropathy in the feet and brain fog since. I believe the spike protein has most likely caused me these issues since they are all blood vessel related and microclotting has been associated with covid vaccine for some and is being researched more.

From what I can find so far the best vaccine spike protein detox are the following: Nattokianse, Bromelain, Curcumin, Lumbrokinase, Serrapeptase, Green Tea Extract.

Is there anything else I can do to detox? Has anyone successfully detoxed and seen their symptoms resolve?

Thanks!

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u/Independent_You7902 — 16 days ago
▲ 1 r/ADPKD

Did the Covid Vaccine trigger any issues for you?

Did any of you have new symptoms or side effects after the covid vaccination? Around the time of the covid vaccine, I developed some retinal issues including inflamed retinal blood vessels and retinal vein occlusion. It may or may not be linked but there have been reports of patients with underlying disease being more vulnerable to vaccine side effects.

My ophthalmologist is 50-50 if these issues are related to ADPKD but I personally think it is - could the vaccine have been a 2nd hit in the 2 hit model manifesting in new issues?

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u/Independent_You7902 — 1 month ago

What is the best supplement to remove lipopolysaccharide that might leak into the blood?

I have minor brain fog and IBS and I suspect both are linked to leaky gut and LPS in the blood.

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u/Independent_You7902 — 1 month ago

Have you had any benefits in trying to address leaky gut and LPS leaking from GI in the blood to reduce migraine frequency?

If so, could you share what was your approach? Any supplements?

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u/Independent_You7902 — 1 month ago

What is the best supplement to remove lipopolysaccharide that might leak into the blood?

I have minor brain fog and IBS and I suspect both are linked to leaky gut and LPS in the blood.

reddit.com
u/Independent_You7902 — 1 month ago
▲ 1 r/ADPKD

What is the best supplements to remove lipopolysaccharide that might leak into the blood and aggravate ADPKD?

what is the best supplement to remove lipopolysaccharide that might leak into the blood?

I have minor brain fog and IBS and I suspect both are linked to leaky gut and LPS in the blood.

reddit.com
u/Independent_You7902 — 1 month ago

what is the best supplement to remove lipopolysaccharide that might leak into the blood?

I have minor brain fog and IBS and I suspect both are linked to leaky gut and LPS in the blood.

reddit.com
u/Independent_You7902 — 1 month ago
▲ 1 r/ADPKD

Have you ever had inflammation in retinal blood vessel causing tiny lines of blood in the vision?

Is it a common thing? I am in early stage adpkd with normal kidney function but I have been seeing an ophthalmologist and retinal specialist for lines of blood in the vision. They said it could be related to PKD but they are not sure and they are making me do more testing which so far is revealing nothing.

If you had something like this, did it resolve on its own? It seems it might be due to fragile blood vessels due to pkd and then being susceptible to injury/inflammation.

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u/Independent_You7902 — 1 month ago
▲ 4 r/ADPKD

Farabursen clinical trial admission for those with ADPKD in very early stages?

From what I can tell from the clinical trial requirements, ADPKD patients with perfect kidney function cannot yet join at this time. I really believe the Farabursen is the most exciting of all the upcoming pkd medications that I have seen.

I am 41 years old with perfect kidney function but I know that based on my parent's trajectory, my kidney decline will likely start at any point now. I have a ton of cysts and once decline starts, it can go fast. Does anyone know if the clinical trial will be opened up to someone like me despite normal function or if I just have to wait for FDA approval and get it through my doctor? Its a terrible feeling to know that I cannot do much (other than blood pressure control) to slow this disease when this medication is out there.

I wish there was a way to apply or request for compassionate inclusion to the trial or something.

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u/Independent_You7902 — 1 month ago
▲ 2 r/AskSF

Anyone done a vitrectomy at UCSF?

I will be soon going there for my first appointment with retinal surgeon and I believe I may one day need a vitrectomy. Just wondering if there are any questions that you wished you asked early on that you could advise me to ask my doctor?

One thing I plan to ask is if the surgeon can be the one driving my operation instead of a trainee.

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u/Independent_You7902 — 1 month ago
▲ 2 r/ADPKD

Farabrusen only for ADPKD1 splicing mutation?

I was reading that Farbrusen, which is in clinical trials to fix the polycystine levels, might only be impactful for patients with a specific ADPKD 1 splicing mutation?

Is this your guys understanding? I know I have ADPKD1 but I am not sure if my mutation is splicing or not.

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u/Independent_You7902 — 1 month ago
▲ 2 r/kratom

Which kratom strain/color do you use for sleep?

Kratom gives me very good mental energy and I am able to think more clearly and energetically. However, I need something for night at sleep. I've seen drinks with kratom and kava but I do not familiar with kava

Any suggestions? I also don't see a difference between the leaf color (red, green, white, etc.) - I get the same subtle mental energy. I want something so I can sleep at night and I came across this drink. Maybe its the Kava that makes it sleepy?

Outside of this, any other ideas for something natural that can help me sleep at night? I have tried melatonin, apigenin, glycine and l-theanine with mixed results.

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u/Independent_You7902 — 2 months ago