New Updates on LC Diagnosis and Treatments!

To repl —

Thank you for the link to the scientific article. I’m reading it now. It’s packed with information, presented in concise, logical way. So, it’s a slow read, but written in a style that I can readily follow.

— friedrich

lol! I wouldn’t say here in the US it’s acknowledged as different types of LC. This paper isn’t considered “standard practice” by any stretch of the imagination! Research and clinical practice are years apart.

Majority of doctors dismiss you - they don’t know what to do for you. And finding ANY doctor who sees patients with LC here is like finding a diamond in the coal mine- rare and precious!

I’ve had to get SUPER creative in finding help. I read the research and then have finally found doctors who will assist me. But this has taken years of commitment and calling and seeing MANY doctors where 1/10 finally listens and is willing to “trial” based on research I give to them.

It’s really hard when brain fog makes finding words difficult and people treat you like you’re an idiot because you can barely communicate! I know, been there!

What’s helped me, especially brain fog has been a process of trialing various medications and herbs. I have gut, brain fog/dizziness, whole body swelling, heart palpitations, and breathing issues, muscle weakness, difficulty sleeping and controlling my body temperature.

Here’s what’s helped over the last year:
Paxlovid (took for 6 months, it cleared my brain fog and took the edge off of my other symptoms but also gave me mild medication induced liver damage-that reversed once stopped taking. Also only was truly effective for like 4 months)

Antibiotics helped a lot too! Helped my heart palpitations, fog, energy. I’ve tried Cipro/flagyl, and doxycycline. But the real game changer for me has been Rifaximin with Berberine, Cinnamon, Resveratrol, CoQ10
I’m going to be adding Adipogenin too.

I have EBV reactivation and gut dysbiosis so these herbals and antibiotics have really worked.

Here’s a great article to try for herbals if you can’t get meds:
https://www.mdpi.com/1999-4915/16/1/124
But this is mainly for EBV reactivation. However many are antiviral and antibiotic so can hold some promise for Covid too.

I have MCAS as well so I don’t tolerate many herbals and have had to pick through to find ones I’m not allergic to. (There are more potent ones than the ones I’m taking)

Best wishes!

Wow - that is a great article! It covers all of my symptoms, except thermoregulation, which was not mentioned specifically. Thanks for letting us know about this!

Many thanks for the long reply…yes I have since done some research on Dr Patterson and see his work has divided opinion…it is difficult to tell if sufferers have really found a ‘cure’ or whether time helped them. After 4 years 9 months LC I am getting rather jaded! As I said where I live not offered Paxlovid, antibiotics etc…just had over 6 different hypertensive drugs for symptoms , been left on 5 simultaneously for 2 years until the TTT specialist removed the beta blocker. I have tried some of the supplements like Nattokinase, anti histamines, Benfotiamine for many months/ years without obvious change. I am also been diabetic, hypothyroid and have fibromyalgia for decades pre LC and have a routine for topping up ferritin, B12, vit D and folate to optimum , higher, levels, but very wary of herbs…not that they don’t work but that they interfere with these existing diseases too. I recently read in a UK National newspaper of a osteopath named Dr.Perrin who was ‘curing’ ME now LC sufferers with a simple head exercise that is supposed to stimulate a blockage in the lymph system…I’ve been doing it for about 5 days and oddly my blood glucose level has changed at the same time needing a rare reduction in insulin by 20%+, might be purely coincidental, but…. Worth a try!

Hmm, interesting. And great the head exercise is helpful. There’s definitely autonomic dysfunction and neck work can assist in this area, so maybe that’s helping you.

You might want to check out others in the UK who are treating LC. Here’s a link of 2 on YouTube and Dr Been addressing diabetes:

I'm so grateful to be receiving IVIG for my long Covid and the assortment of autoimmune diseases it has awakened and created. It has saved my life. I would probably be doing somewhat ok if my thyroid were not hyper.