New test

[janeb15]

If you have made the connection between Hashimotos, thyroid dysfunction generally and Lyme Disease you may be interested in this new test. news-medical.net/news/20181...

Jane x

[Hillwoman]

Hi Jane, I hope you're well. Thanks for the update.

I've mentioned before, I think, about the recommendation I've had from Dr SM to consider testing for Lyme and co-infections. This is such a minefield though, I don't really know which tests to choose (leaving aside the sheer expense), so this development might make the decision a bit easier for people considering what to do next.

[janeb15 in reply to Hillwoman]

I agree. It really is a minefield and the only sure way of getting an accurate diagnosis is to see a Lyme literate doctor and there are none in the UK. Dr. SM is the closest probably, but without the NICE sanction for diagnosis and treatment it is very difficult for a UK doctor to act outside the box. You might also be interested to read this brilliant new book:

"Toxic - Heal your body", by Dr.Neil Nathan. I was in tears after reading only a few pages. They described my daughter's battle so accurately it was as though he had been a fly on our wall for the past 26 years. I can really recommend the book. Jane x

[Hillwoman in reply to janeb15]

Thanks for the recommendation. I'm having a look at the book just now.

How is your daughter doing these days?

[janeb15 in reply to Hillwoman]

Thank you for asking. That's very kind. Because she had mycotoxin illness as well as Lyme Disease this had to be treated first. We were warned this might take up to 5 years because it was so deeply seated (this is explained in Dr. Nathan's book), and she is one of the 25% who cannot remove the mycotoxins from her body without specific medication. Thankfully that is now done. She has just begun her Lyme Disease treatment and because of Herxheimer reactions it's hard to get a handle on how she is. Last week she had two FANTASTIC days, but this week has been very hard. She grabs the good days when they come and lives her life to the full, and thankfully she is a VERY positive person. One of the hardest things to explain to people is that when she feels a little better and is seen out and about she doesn't look ill at all. She will have a good story to tell when she is well again. Hope you enjoy the book. Jane x x

[Hillwoman in reply to janeb15]

It's good to hear she's now having some better days. But I share the frustration experienced when people make judgements based solely on how people think you look. 🙄

Very few doctors seem to know anything about mycotoxin illness, so I'll be interested to read more when the book arrives. I live in a cold, damp area, with persistent mould in parts of my old stone house. Not sure how I can deal with this... 🤔

[janeb15 in reply to Hillwoman]

I haven't been able to get anyone here interested in Mycotoxin illness. I wrote to PHE and the reply I received stated that "it doesn't exist in the UK". What baloney! We live in North Devon right by the coast and it's VERY damp here. The first rule of dealing with mycotoxin illness is to deal with any moulds in the house apparently, but Caroline has managed to get hers under control so I'm not so sure it's that big an issue. I doubt whether there are many houses in the UK that are mould free anyway. We live in a very damp part of the world. There are companies in the USA that will go into a house and remove all the moulds, but I don't think that's the case here. Sadly the test for mycotoxins is very expensive and has to be done in the USA, but the treatment is very cheap. Since we discovered that Caroline had this problem I've noticed on countless occasions that black mould is frequently mentioned as a threat in US TV programmes. Jane x

[Hillwoman in reply to janeb15]

What is the treatment for mycotoxicity?

I had a look on SM's website and she recommends a diagnostic fortnight's holiday in a very dry climate - it doesn't matter whether it's cold or hot. You can also holiday by the sea in a dry climate, as long as the prevailing wind is onshore (no mould in salt winds). Apparently, people often mistake the cause when they feel better on holiday, and put it down to rest, warmth, sunshine, a change of scene, etc.

[janeb15 in reply to Hillwoman]

That makes a lot of sense, but unfortunately it's not enough. Certainly my daughter is MUCH better in a dry climate, but sadly everywhere in the UK is damp. It is a very complicated illness and treatment has to be individually orchestrated. It involves binders to remove the toxins through the gut, and anti-mould medications to kill any colonies that are growing in the sinuses and gut. That is an extremely simplified explanation, but Dr.Nathan has a comprehensive explanation in his book about testing and treatments. Treatments have to be made very slowly and carefully so as not to over toxify the body's elimination systems (gut, skin, liver, lungs). It can be done reasonably quickly in some cases, but may take some years depending on the sensitivity of the individual. Jane x

[Hillwoman in reply to janeb15]

Crikey, I didn't know it was complicated! Nothing comes easy with chronic illness... I look forward to reading about it in the book.

I think SM meant that the fortnight's holiday should be sufficient for diagnosis. I don't think she considers it a treatment though. She recommends some form of desensitisation therapy since, as you say, we'll never get away from mould in our temperate maritime climate. From what you say about Dr N's approach, desensitisation might not be enough for someone like your daughter.

xx

[janeb15 in reply to janeb15]

I hope you enjoy the book. It should be compulsory reading for all GP's. Jane x

[Pamanda]

Can’t thank you enough for this!