Trying to get a diagnosis

Did you get your gallbladder checked? My doc usually thinks problems that get worse with eating are often caused by that.

hi Cignet

good to see you back

good ideas above - worth checking gall bladder - but i had that and its a very characteristic pain normally.

i would describe it as like someone is trying to inflate your insides with a foot pump till they burst - waves of pressure and pain - definitely nauseating - but most people describe it as one of the most painful things they have ever experienced - the nausea is therefore secondary - still its a non invasive test via ultrasound so quick and easy to do - if you tell them its after eating esp fatty foods they will likely offer it.
eggs were the most likley trigger for me - also happened more when i was stressed.

gone now - no surgery - natural methods

food allergies also worth checking out also - can do strange things - but i would have to say i dont know much about the testing for them - my view so far is its seems a bit hit and miss - but that may just mean like with a lot of testing you have to choose well - others here may know more.

the other thing that occurs to me is Bartonella ( i think every symptom can be bartonella though - so take that as read ) i will try to explain why:

bart can have these odd effects through the small vessel disease it causes having effects like starving organs and nerves or particular parts of the brain (especially white matter areas) of sufficient blood and oxygen and causing odd neuropathies - also to nerves in the autonomic and sympathetic nervous systems - not just the ones that sense pain etc. so it can cause just about any symptom imaginable
- dependent on which bit of the brain or body organ or muscle or joint is starved of oxygen etc
it can also cause overt and subtle forms of Mast cell activation syndromes are often present in bart also - which leads to odd reactions to foods that are not immune related so i don't think they will show up on food intolerance panels ( not 100% sure but think its a separate mechanism to antibodies) - but are an intolerance none the less.

BTW - i have had much milder but similar reactions to food like chocolate before - like going for a walk - sitting by a lake and eating a little picnic trying to enjoy a bit of the outdoors - finishing with some nice quality organic dark chocolate - and immediately becoming tired and thick headed and finding walking really hard work. i don't know why or by what mechanism - but nuts could also do this to me - a few other things too - maybe pastries.

bart is also known for causing lots of general gut issues - including gastritis, motility issues, food intolerances in general, colitis too.

it would also explain why there is a poor response to abx - i had 9 months of doxy, azithro and rifampicin and was worse for a couple of months and then by the end only partially improved

i think i would check them out in that order

1, ultrasound for gall stones or thickening of gall bladder wall - colonoscopy/ gastroscopy is a good idea too just to rule out and overt physical problem ( the procedures themselves are a breeze - only the prep for the colonoscopy is unpleasant - stay v close to a WC!!)

2, food intolerance testing - but do your research first to get one that has value

3, bart testing is generally very tricky - or v expensive in the best lans ( galaxy)
not worth doing the common or market antibody tests - only around 20% sensitive in chronic cases
igenex has a bart western blot which is probably a half way good test ( maybe 50% sensitive ) and lower cost than galaxy

good luck and keep us posted

The food thing could be allergies or severe MCAS.

Cignet - i know what you mean about the health system and doctors giving you the brush off - i have had it myself - especially in the UK NHS - some appalling treatment.

i wish i were closer - as i could offer to be an advocate for you.

they are not all the same though - i changed GP surgeries because of the poor attitude of the one nearest to me that i had joined when moving to the area by default.

the new one were at least decent human beings - they were still stumped but at least trying to help

there is a website run by the Care Quality commission - where the GP surgeries ratings and audit results are displayed - where you can search by postcode - i moved from an average one to a good one and it was well worth it.
https://www.cqc.org.uk/what-we-do/services-we-regulate/find-family-doctor-gp

the other thing i have kind of deduced over the years is that - firstly the GP's are tasked with controlling costs - and so they have a kind of "computer says no" attitude to additional investigations and tests - unless you say the key words that they are looking for.

i think what's going on here is while they need to control cost on the one hand - if a patient says they have x+y symptoms and the guideline says they should test A +B in those cases and they don't - then they can get into trouble for negligence

sometimes you can look up or figure out what those key words are

eg for gall stones ultrasound it was pain after eating anything fatty

the NICE care guidelines are on the NICE website

if you are going to refer to a private consultant - then the Dr certainly shouldn't be blocking that - as its not their cost. So they are usually v open to it. if they are not defo change GP.

sometimes i helps to have a little script to go in with - explaining why you think its important to have X test done - i find if i am persistent and patient and just keep stating my case - they usually will refer me - eg referral - for infections disease doctor.

the real problem - is that although they are useful for ruling out any of the obvious things - and i still think that's worth doing - after that if they don't find anything the NHS are just not equipped to help.

drop me a line via email if you want help with a game plan for a particular outcome.

magoo2 said...
Something sounds systemic.

Have you been checked by a biological dentist?

do you have dental work? root canals?

I work with a doc in St Louis who treats many mystery illness folks-often dental and parasites are main issues/

Worth a check-many docs start with dental

Hi Magoo please can I ask you a question. I've read a lot about Dr Simon Yu work and wanted to ask about your experience with dental issues and parasite medication. So I've been going through a parasite cleanse for this year an in the later stages. I just wanted to ask how long did you wait after your dental surgery to continue your parasite medications. I heard Dr Simon Yu gives it to his patients straight away. Be Im wondering how long to wait.. I waited about 10 days after my cavitation surgery and now i'm wondering what will impact healing more the parasites or the killing of the parasites.

Please could you tell me how long you waited before taking parasite medications after dental surgery

Just an fyi - Cignet hasn’t been on the forum for 5 months - you may not hear from him/her