Viral onset (newbie) lots of questions

[Rhon-1956]

I have cfs. SS. Hashemotos.

I have Chronic Lingual tonsilittis. I had paletine tonsils removed at 5 ) The pain is not controlled by tramadol. I am waiting to see Rheumy at monash vic using public health as i need to acess other specialists. Bloods show low immunity

Q when u get a cold. Or infection with SS does it last a long time

I am very sick for approx 12 weeks or more. I used cortisone which helped a bit for a week

I also have tongue problems. Use biotene products

[Megansheart]

Hello Rhon-56,

Sorry to hear of your many health issues.

Have you had your IgG's and IgA's tested? It is possibly you have an immune deficiency - (hypogammaglobulinaemia), which causes you to be susceptible to infections. (Oh yes I just noticed you said you had low immunity).

Usually once someone has Sjögren's Syndrome the opposite happens and their immune system goes into hyperdrive and their gammaglobulins become higher. For me this has meant that I now rarely get sick in the sense of colds and flues.

It's certainly worth mentioning to the Rheumatologist at Monash that you get prolonged and frequent infections. Hopefully s/he will be astute enough to order you gammaglobulin testing again and if low implement some treatment like IVIG, which is VERY expensive and can only really be done through a public hospital, if you don't want to get into the poorhouse! 😉

[Rhon-1956 in reply to Megansheart]

thanks I will show your reply to my gp if that is ok. ?

I have the blood test for Sjorgrens. one is border line .. the rest are in.

I do have low Natural killer cells. which came with the CFS diagnoses. they think that is auto immune. my ANA is extremely high. in CFS ESR is low . mine is high.

low other things.. I cannot remember. HOW TO BOOST Immune system ????

oh illness is costing me a fortune.. it always has. we are both retiring soon. well cutting down for 2 years I work from home. then my son will take over.. I was hoping my dil would do the books. my husband is learning. he can see I am too sick.

the reason I asked. .did you watch the lady that runs this group. Australian lady. her videos on Sjogrens.. She mentioned about getting sick.. but did not say.. why she said that. my wait will be long.

in the mean time I am at the pain clinic at different hospital. ah that is why my doctor said to go to Public hospital. probably. she said .. you have teaching professors and they can refer u to another specialist.. etc.. I will have Disability in next two years. when I stop working. and health card which will give me cheaper meds.

I have used cortisone when I had the cold. that lasted 12 weeks. we are not sure why.

the idea was my immune system is stuck on. I also have pancreatitis. and problems with food. swallowing. but the chronic lingual tonsillitis. is rare.. pancreatitis is rare

I had a rare cancer.. I had been tested for Lupus over and over.. as that is what both gp and CFS doc thought I had. but this time I am so tired.. never was with CFS. it has been two years of this.. and I did not want the lip biopsy. but I will.

thanks for reply

Rhonda Melb Australia ( Ronnie or Rhon )

[Rhon-1956 in reply to Megansheart]

I know they wondered if my immune system was attacking my tonsil at the back of tongue. but the tongue is a mess.. so that rubbing on the lingual tonsil. is causing pain.

nobody knows what to do. I did get better after the prednis.

[Hidden in reply to Rhon-1956]

Hi there. I'm same as Megansheart and have very overactive immune system - presently being dampened quite aggressively with Mycophenolate.

Mostly I never get colds or flu or tummy bugs or chest infections. But I will have episodes of the opposite - on or off drugs - when I go in the opposite direction and get everything going about severely. In 2015 - while off all meds - I had flu, pneumonia, pancreatitis and two lots of sepsis - all in the space of 6 months.

My IgG is elevated and my doctor explained that this concentration of IgG causes high levels of inflammation - meaning that my body is battling inflammation 24/7 so high levels of inflammation in my blood are not reliable in monitoring disease activity as they would be for Lupus or RA.

My IgA is high too - as is ESR/ PV and CRP - plus my ANA is a clear positive. I was diagnosed by +lip biopsy - most of my problems are neuropathic or autonomic. In common with many with Sjögren's I struggle horribly with swallowing, burning lips and gums, rancid taste, loss of smell, numbness and tingle all around my face and get spasms in my oesophogus with cold foods. So you aren't alone at all with swallowing issues or sore throat and mouth although the causes may be very different.

I do know people with Sjögren's who have immune deficiency which can skew the results of bloods etc significantly I believe. Good luck getting all this diagnosed and managed.

[Rhon-1956]

high esr can mean inflammation and so can

IgG and IgA are also markers for allergies. so it is hard to tell.

the immune markers are quite different. my gp just wants to know what is what and I think we will need to wait on the public health specialists to look at it all.

Does the lip biopsy hurt ? cause any further problems.

interesting about cold foods. I can only eat food at 60 deg. so my tea decaf is cold. I am struggling to ever feel not thirsty.

it is school hols and I am just having a break from doctors for two weeks. I am going to spend a day with my grand daughter on Friday.(and I am baby sitting my sons dog which means I have 4 dogs in the house ). as I am so sick of medical appointments and how complex it is all getting.

is there one person who has sore throat.with chronic lingual tonsillitis. I know gerd/ gord is common. I have had a series of UTI's that I have never had before. but I think it has settled.

but what to drink. ideas please.. but not bubbly - not cold. I think I will miss soup weather.

I have had some soft drink with ice in it. and it is flat for FUN.. how sad is t hat. haha