Does my daughter have ana negative neurophyschiatric SLE? Cyclophosamide side effects?

[Vickysmum]

My 16 year old daughter has been ill since September 2016 following an insect bite which didn't disappear, before then she was a bright, happy, healthy and active young girl. Ana negative neurophyschiatric SLE is suspected but no firm diagnosis yet. She suffers from memory loss, a constant headache, recurring all over head to toe rash which swells up each part of the body as it travels downwards, swollen lymph glands, swollen and bleeding lips, swollen tongue, strawberry tongue, difficulty understanding and speaking, aphasia, slow processing, difficulty eating or eating too much, difficulty sleeping, hair loss, stomach pain, vomiting, diarrhoea, brown and orange wee, hepatitis, incontinence or not going at all. Consultants believe she has an autoimmune condition which affects her whole body in particular the brain. She's had 3 relapses and intially treated with antibiotics, steroids, immunoglobulin, plasmatheresis, followed by rituximab then more immunoglobulin and rituximab in August 2017. She started Mycophenolate Mofetil in October 2017 but had another relapse in January 2018 and has been in hospital for most of this year. She is currently having further plasmatheresis following methlprednisolo in January 2018. Ogliclonal bands and raised ESR indicated twice, all EEGs, CT, SPECT, PET, MRI scans have been clear. Is there anyone on this site with similar symptoms? Consultants considering treating her with cyclophosphamide, I am concerned that the side effects will be worse than her illness.

[happytulip]

Has she been tested for Lyme's disease?

[happytulip in reply to happytulip]

Just a thought

[Minnskimoo in reply to happytulip]

My thoughts too! 👍🏼

[Treetop33 in reply to Minnskimoo]

Mine too. Note that the test the docs use is a bit basic, I've been told, and there are a range of blood tests for it which are more accurate.

[Vickysmum]

Yes been tested for Lyme disease a number of times.

[Hidden]

What an awful worry for you. I can’t really offer much insight from a personal perspective but I do have neurological symptoms despite clear tests - apart from matched oligloclonal bands - which are now thought to be related to my Sjögren’s Syndrome. I believe, looking back, that I’ve had Sjögren’s and Hashimoto’s thyroid disease since I was about 8 years old and I’m now 55. My symptoms aren’t nearly as severe as your daughter’s but i just wanted to say that things can often change/ improve very dramatically sometimes as hormonal changes occur. So I just hope that your daughter finds her symptoms disappearing as she grows.

[Vickysmum in reply to Hidden]

Thank you.

[Erchesw22]

Has she been tested for Lymmes Disease?

[Vickysmum in reply to Erchesw22]

Yes a number of times.

[Angelamarston1963]

Goodness me you must be at your witesend . Your daughters lucky to have your wonderful support . It’s always difficult to make treatment decisions but with all Of her current symptoms anything is worth a try . Good luck to you both

[Vickysmum in reply to Angelamarston1963]

Thank you. Whatever she has, consultants say it's very rare, it would be wonderful to have a diagnosis, I am hoping there is someone else with similar symptoms who will get in touch. Consultants say they believe it's a systemic vasculitic autoimmune condition which affects her brain, they suspect it is lupus.

[Ladyuponthelake]

To reply to your query on Dr Hakim and his knowledge of your daughters illness on my post... if something is discussed during the session that may be of ANY help, I will surely pass it on to you.

I hope aging makes a difference for her. It sounds like a very unique situation.

I pray you are directed to a doctor with the answers your daughter so badly needs.

xx

[Ladyuponthelake]

Has she seen an endocrinologist?

🌻🌻🌻

[Vickysmum]

Thank you, not seen an endocrinologist, had test re thyroid which was ok. Ovaries scanned a number of times. Seen a number of consultants from neurology, neurophyschiatry and a neurophyscology, metabolic, infectious diseases, dermatologist, rheumatologist consultant.

[chrisjake]

You can test negative for lyme disease and still have lyme. The test are not 100% accurate. Here in US, lyme literate doctors treat based on symptoms. There is a lab in US called igenex where you can learn about false negative test.

[Vickysmum]

Thank you. Yes already aware re lyme disease and false negatives etc. Consultants say my daughter would be getting worse with the autoimmune treatment if she had lyme, however, she is improving but keeps relapsing.