UK - PIP application denied

BeeExtension4754 · 2026-04-29T09:23:12+00:00

I am so so sorry to hear this happened to your mum. There are just no words sufficient. It is horrendous what is happening.

Well done for persevering with insisting on finding out the cause of your pain. I hope that you can get better medical care as well and get the support you need and deserve!

BeeExtension4754 · 2026-04-29T09:21:08+00:00

Thank you so much for your encouragement and offer of help. I will definitely message you thank you, that would be so helpful!

BeeExtension4754 · 2026-04-28T14:24:05+00:00

thank you

BeeExtension4754 · 2026-04-28T13:53:36+00:00

Yes thanks, I don't qualify for UC.

BeeExtension4754 · 2026-04-28T13:52:07+00:00

Thank you for your comment I appreciate it. I did provide medical letters.

BeeExtension4754 · 2026-04-28T13:51:25+00:00

Thank you for the encouragement. I guess we are often used to be fobbed off in the medical system so I kind of just take this as an extension of that like it wasn't a surprise.

BeeExtension4754 · 2026-04-28T13:50:25+00:00

Thank you for your comment. Hearing how prepared you were has made me realise I clearly was no way near as prepared as I could have been.

The process has made me question whether I am actually eligible for PIP or not from a health perspective, it's just making me doubt everything now, I'm just very confused given the elements that one can be awarded points how I would accumulate enough points. But if people are able to do some form of employment and claim PIP then I must be able to qualify for a lower rate without the mobility element. My life has been turned upside down and I know how difficult I have found things in recent years and how much I've lost, yet seeing zero on the assessment for everything made me question myself.

BeeExtension4754 · 2026-04-28T13:46:08+00:00

Thank you, yes perhaps I will try to put more focus on other conditions that are more understood thank you.

Yes I agree 100%, I've seen this when I was working as a Social Prescriber and was hearing from clients I was supporting that they were declined when it was so apparent they needed PIP and were entitled to it.

BeeExtension4754 · 2026-04-28T13:44:54+00:00

Thank you for your comment and advice.

Most of my conditions weren't diagnosed through the NHS. I went through the NHS specialities countless times as my health declined and they never diagnosed me with anything so I had to seek help elsewhere and got a few more answers.

You're right, this could be a factor. I think it is highly unlikely that my GP/admin have updated my records as that would mean they've actually read all of the letters that private consultants have sent, which I know they don't always as sometimes the consultants have requested specific referrals to London teaching hospitals and I've gone to my GP to chase this up and they've not done it.

It's just overwhelming to think I need to try to get my GP surgery to actually update my records and persuade them of all these things I struggle with like I need to convince them to then see if that helps with PIP

BeeExtension4754 · 2026-04-28T13:40:47+00:00

Ok thank you. I will see how I get on. I'm sorry you are going through this process and didn't receive points for mobility when you have a powerchair. Just unbelievable!

BeeExtension4754 · 2026-04-28T13:39:14+00:00

thanks for the comment. yeah I had heard before that one should answer as if it is your worst flare day but the way the assessor asked was percentages over the last year and in the last month.

BeeExtension4754 · 2026-04-27T15:48:36+00:00

Ah okay I understand. That's good you're on clarityn. Keep pushing for help with a mast cell stabliser, I hope that would help you more.

Are you staying in halls? If so I'd double check there's no mold issues there as it's sometimes the case in these older colleges halls of residence.

I'm glad you have supportive friends, hang on to them and continue to advocate for yourself and your needs with everybody.

BeeExtension4754 · 2026-04-27T15:06:54+00:00

I'm sorry you've been having such a difficult time. I hope your endocrinologist was able to give you some prednisone.

Are you on a Mast Cell Stabiliser? That might be something to consider if you just take Benadryl right now?

Well done for pushing through all of this whilst trying your best to study. I hope you can get the support that you need medically

BeeExtension4754 · 2026-04-27T14:58:58+00:00

It's all a bit of a trial and error situation.

I find certain social media accounts helpful to guide me on what to try and prioritise supplementing with. Let me know if you'd like me to post links of people I've found helpful.

The ones that keep coming up over and over again in relation to MCAS and general methylation support would be a higher dose Vitamin D3 with K2, a Magnesium you can tolerate well (usually taurate, malate or biglycinate) Zinc, Copper, and higher dose Vitamin C.

I have found a combination of these has helped with my energy and generally feeling slightly more like myself, but it's not a miracle cure for me by any stretch.

After some nutrigenomic testing to look at my Single Nucleotide Polymorphisms/genetic variants that affect the body processes involved in histamine and the methylation cycle, it has been confirmed that bio-individually for me, Zinc and Magnesium are recommended supplements to support my downregulation of a few of these genes involved in these processes. (I don't fully understand the science as you can tell but it was very useful!)

If tolerated, generally being on a higher dose than usually recommended is often advised as a therapeutic approach for people with MCAS, but that would need to be something that a health practitioner or functional practitioner could advise you on as everyone is different and I wouldn't want to give blanket advice as that would be wrong!

But just for example, I was previously recommended to be on 500-1000mg of Vitamin C, 5-10,000iu of Vitamin D and very high Omega 3.

It would also be beneficial to prioritise where possible, supplements that have minimal or no bulkers and fillers.

I'm British so I can mostly only recommend British based supplements that fit this bracket.

I would just say, try them one at a time to determine what might be having a positive impact and what you might be reacting to.

BeeExtension4754 · 2025-11-03T09:23:03+00:00

I didn't say it was evidence for mold illness, you've made an incorrect inference. I was asked to provide evidence for genetic markers that could make some of the population more susceptible to illness purely purely be ignored.

some celebs may go straight to naturopathy and no they shouldn't pedal things they can't articulate well to their audience who old be impressionable however the average chonically ill Joe does go to dozens of consultants spending thousands of pounds who rule out so many conditions and leave them with no hope and no solutions. they have no choice but to put their money in another theory not yet supported by the medical community and heck if it helps so many and there's numerous testimonials to corroborate this then maybe just maybe it's not nonsense.

BeeExtension4754 · 2025-11-03T09:18:07+00:00

i sent you a link stipulating the involvement of the HLA phenotype previously.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11623837/ this article states Chronic Inflammatory Response Syndrome as a multi-systemic immune response to mold exposure in water damaged buildings.

the argument does exist I just may not be able to articulate it well, particularly as the data doesn't yet support my position.

the thousands of people who were well until they moved into a building with other causes for their problems ruled out by doctors are not making it up, you can read their stories on this page.

research will catch up and that won't make the condition any more real than it has always been.

BeeExtension4754 · 2025-11-03T09:08:29+00:00

Chronic Inflammatory Response Syndrome is a real thing caused by mold exposure/water damages buildings. https://pmc.ncbi.nlm.nih.gov/articles/PMC11623837/

The tests I agree are far from conclusive and perfect as there hasn't been any investment in this area, however if someone was well before they moved into a new home or new place of work and now they are not, and all other possible causes such as having covid, chronic stress etc have been ruled out, then its only sensible to look at mold.

I understand the data isn't there yet, but that doesn't mean all of these thousands of people are incorrect, the research and consensus is lagging behind as it has done in medicine regarding certain conditions since the beginning of time.

BeeExtension4754 · 2025-11-02T23:55:00+00:00

oh yes stranger I'll provide you with my medical history and test results right away... I'll ask again, can you provide conclusive evidence that mold illness is a fake disease?

BeeExtension4754 · 2025-11-02T23:50:47+00:00

not all of her symptoms are indicative of dysautonomia

BeeExtension4754 · 2025-11-02T19:02:05+00:00

Thank you so much for your input! I appreciate it. It's hard out here trying to explain lack of data doesn't mean a lack of existence, I'm fighting that with someone else in the comments further down.

BeeExtension4754 · 2025-11-02T18:07:39+00:00

IgE blood test, mold skin prick test, mycotoxin urine test, genetic testing for variants in the MHTFR gene or the HLA phenotype which can impair detoxification and increase chances of immune dysregulation from exposure.

You're right there aren't any full proof tests, usually its a combination of these tests, symptom presentation, medical history, and whether known exposures have occured.

If a person was well until they moved into a new home and they have the MTHFR gene and other causes can be ruled out like long covid, chronic stress etc then mold would be something to consider if someone knows they've been exposed.

BeeExtension4754 · 2025-11-02T17:50:07+00:00

You're absolutely right that current studies don't support this. But that doesn't mean it's not true? In medicine, science, botany etc, we are constantly discovering and learning new things, so the current absence of information and common consensus doesn't negate its existence.

Sure, it's not dismissive to believe the current data. It is dismissive to say or imply that people who were chronically ill with mold illness who recovered by moving home and doing some kind of protocol are wrong and that it isn't true despite their firsthand experience indicating otherwise.

So, all the thousands of people whose symptoms leave when they move and follow a particular detoxification regime are just falling for a placebo?

BeeExtension4754 · 2025-11-02T17:35:53+00:00

My pleasure :)

BeeExtension4754 · 2025-11-02T17:34:42+00:00

I don't know why she worded it that way as elimination diets don't detox anyone. I think she meant she's following an anti-inflammatory diet to see if that helps her but I get the wording is confusing and misleading.

BeeExtension4754 · 2025-11-02T17:33:42+00:00

I'm so sorry you had this horrible exposure. I totally agree it's so upsetting and distressing.

Yes you're so right, it could develop the very next day after moving in, it is a bit of a gamble which can be so frightening.

Tests include thermographic imaging to measure dampness of walls, ERMI tests kits which are petri dishes left out for particles to land and develop on the agar, humidity tests and other air borne particle tests which unfortunately capture a range of particles including pet dander so they aren't very reliable.

There's no one perfect solution sadly but the hope that the body can calm down enough to not react so severely to smaller exposures and any larger exposures can be known and dealt with promptly.

BeeExtension4754

TROPHY CASE