Mystery illness for 10 months - has anyone else had this with tonsil stones?

[Terribletonsils]

I've been getting a recurring mystery illness for 10 months. Every 2-4 weeks, I feel completely run down with body aches, exhaustion, and an upset stomach. A day or two later, a one-sided sore throat with white dots on my tonsil, swollen glands, and ear pain kicks in. This has happened over 15 times.

GPs and two ENTs are stumped. Antibiotics, glandular fever, and allergy tests were all negative. One ENT suggested tonsil stones but said my full-body symptoms were unrelated, which feels wrong given how consistent the timing is. My blood work shows some signs of infection, but nothing specific.

Has anyone had a similar experience with recurring illness and tonsil stones? The ENTs don't think a tonsillectomy would help the full-body symptoms, so I'm hesitant to have the surgery. Any advice on what this could be or what I should do next?

Bump. Sorry, I really need help!

Have you considered histamine related symptoms or MCAS and/or nervous system related symptoms? This potentially could account for all of the things you mentioned from fatigue, aches and even reduced immune function.

generally one would know if their nervous system was overworked (burnout) through a combination of symptoms (diverse and non exclusive list: chronic pain, fatigue, food intolerances or allergies/IBS, poor immune function, sleep issues, anxiety, depression) and behaviours such as perfectionism, people pleasing, dissembling/mask wearing, attachment issues etc

Perhaps seek out a functional medicine practitioner, being as allopathic medicine has not yet helped?

Thank you for your reply @MinnieJumbo , I will do some further research in these areas. My nervous system was overworked when the problems started. I have addressed this but the symptoms, whilst often less severe than when it started, are still happening frequently.

Do you know how I could ask the GP to look into these things? Would it be an immunologist I would need to see for example? Aside from this I am looking into private food sensitivity and hormone testing in case either of these things are having an impact.

I get tonsil stones all the time. I used to get recurring sore throats/tonsillitis - at least 5/6 times a year. I haven’t had a sore throat for about 5 years now though. I’ve been brushing my teeth first thing when I wake for the last 5 years. I brush them before I swallow.

I know it sounds ridiculous but I’ve often thought I must have some type of low grade, undetected infection seeing as I haven’t had a sore throat since I’ve been brushing my teeth first thing in the morning.

I had this and was diagnosed with adult onset PFAPA

@Pmteepee do you feel physically unwell at all when you have tonsil stones? I will have to try the early morning tooth brushing! You could be onto something there!

@mynannygoat7 I'd never heard of PFAPA before but having googled, it sounds a lot like what happens to me! Do you mind me asking how they came to the diagnosis and is there treatment?

@Terribletonsils With regard to your GP, it’s unlikely they can test much. MCAS is not widely recognised in the NHS.

They perhaps could test your homocysteine levels and serum tryptase (both in and out of flare). Also would be useful to look at B12/B deficiency which can lead to high homocysteine. They can refer to an allergist/immunologist, of course.

Food intolerance testing can be good, but often nutritionalists (that I’ve met) disregard these in and are more in favour of observing reactions.

Functional medicine is not yet available on the NHS but I’m happy to give some recommendations of practitioners. Please DM if you’re a interested.

@Terribletonsils sorry I didn’t see your question til now. Yes, I feel queasy with an upset stomach.