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I’m not sure if I have those measurements you’ve mentioned in my test results, I will double check but they are not terms I am familiar with.
So, are you thinking people with EDS have naturally lower CD57 scores? Meaning a misdiagnosis of Lyme or that we’re more prone to picking up bacterial infections/not being able to deal with them ourselves? Interesting either way!
MY LLMD explained to me that having a form of EDS means I am more likely to have IBS, which I do so put me on the FODMAP diet which is wroking quite well for me at the moment. She also explained that might mean I was more likely to suffer from Lyme disease than other ‘healthier’ people – what do you think?
Oh, also forgot to mention I had glandular fever too when I was 14/15 – lots of my Hashimoto’s friends have had it too. Might be of note.
Hi Chicken Boo, Your LLMD may know the TNF-alpha and IL readings. Most patients I’ve come across have those as part of their Lyme panel. Hmm. “IL” stand for ‘interleukens’ — maybe that will help. TNF is tumor necrosis factor. EDS and IBS — yes and no. We ARE more prone to IBS and are often suspected of have celiac disease. My IBS became debilitating, but celiac testing was negative as I suspected it would be. After 2 days on mast cell treatment, it stopped, never to return. A GI doctor friend of mine mentioned that he was treating “IBS” as mast cell disease now, and it is undergoing clinical trials. With EDS, our vessels and blood brain barrier is leakier. That may be why we seem to be more prone to having every bug under the sun enter where things should not be allowed in! So, I wouldn’t be surprised (hence this thread) if EDS patients are more prone to chronic Lyme, or the brain effects of same. I believe we eventually develop lower CD57 scores as our immune system drops (once triggered). I watched mine fall over a few years, until it was rock bottom. My hope (and expectation) is that mast cell treatment will help decrease some of the vessel and blood brain barrier permeability — histamine alone will cause that to increase — and mast cells release over 60 chemicals. Because many of us are basically fine until we are “triggered”, I do wonder if your glandular fever was your trigger. It is one of the most commonly known dysautonomia triggers… So much of this is new (and exciting) science. Thank you for helping us put some pieces together! 🙂
Hi Dr Diana,
Do you have any good links/or explanation for what mast cells are and how/why top treat them? A quick search on Google brings up a lot on treating mast cell tumours in dogs :-/I’m currently doing the FODMAP diet which is lactose, gluten and some fruit/veg free – it’s helping my IBS a lot but I still wake up with a ‘stomach ache’ each morning that almost feels like my stomach has been clenched all night, if that doesn’t sound crazy.
I do feel that glandular fever was my trigger – I am almost certain it started my thyroid problems (it’s called GLANDular fever after all) as I’ve had fatigue and less-than-normal energy levels since that happened. I suffered quite badly with it for about 6 months.
Hmm, I have things such as Lymphocytes and Leucocytes if they are of help?
So, were you treated for Lyme or did you decide that something else was at the bottom of it all?
Hi Dr Diana,
Do you have any good links/or explanation for what mast cells are and how/why top treat them? A quick search on Google brings up a lot on treating mast cell tumours in dogs :-/I’m currently doing the FODMAP diet which is lactose, gluten and some fruit/veg free – it’s helping my IBS a lot but I still wake up with a ‘stomach ache’ each morning that almost feels like my stomach has been clenched all night, if that doesn’t sound crazy.
I do feel that glandular fever was my trigger – I am almost certain it started my thyroid problems (it’s called GLANDular fever after all) as I’ve had fatigue and less-than-normal energy levels since that happened. I suffered quite badly with it for about 6 months.
Hmm, I have things such as Lymphocytes and Leucocytes if they are of help?
So, were you treated for Lyme or did you decide that something else was at the bottom of it all?
Hi Chicken Boo, Please check out tmsforacure.org for lots of mast cell info. On this site under “handouts”, you’ll find an article on the latest mast cell protocol. It’s a good one! My kids and I take a double dose of Zantac and Zyrtec (ask your doctor!) and have added Cromolyn Sodium, and are doing much better. We still have break-through attacks, though. I’m working through the steps to get in to see a mast cell specialist. My mom is in the same boat (we like to make these things a family affair. ha) Glandular fever is a big trigger for many of us, I understand. I was tested for Lyme no less than 4 times. I don’t have Lyme, but we have so many overlapping symptoms, my theory is that we may both have stagnation of the fluid dynamics in the brain, causing mast cell degranulation and the immune cascade starts tipping over our dominoes! Comparing notes with our other “family members” — Lyme, chronic fatigue, fibromyalgia, Alzheimer’s, Parkinson’s, etc should help us figure this out sooner. THAT’s my mission. 🙂 Diana
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