Beating Morgellons in Bournemouth, UK

Hi Craig - welcome to the forum

i am in the UK and have Morgellons like symptoms - Lyme positive and suspected Bart

also improving on buhner herbs - but it has been a long road for me - 6 years in total - taking buhner lyme herbs for most of that time - but improving over the last 2 years with a more comprehensive herbal program incl sida, houttuynia, teasel, Cryptolepis, alchornea and mahonia.

i am also trying Methylene Blue and Ivermectin ( which seems to act as an immune modulator)

i recently started drinking cistus tea also - so we seem to be on a v similar path

good luck with your continued recovery!

Hi CKelt welcome to the forum!

lymedisease.org had an article on morgellons a few months ago.
I'm not sure if it's helpful, but I thought I'd share:

https://www.lymedisease.org/links-morgellons-lyme-disease/

I hope you stick around on the forum!

- Rainy

Hey Craig - I'm in Gloucestershire at present - about to move to the Midlands

i will list my co-infection herbs below - but i am also still taking the Buhner lyme herbs - which i think do help a little - so will list those too - i'm taking all as tinctures - which i make myself according to the Buhner recipes

the numbers to the right are dose in ml - 4x per day

lyme herbs
Chinese Skullcap root - 2
Uncaria Rhynchophylla - 4
Cordyceps Mycelium - 3
Salvia Miltiorrhiza root - 3.8
Uncaria tormentosa bark - 3
Kudzu root - 3
Licorice root – 0.5

bartonella / coinfection herbs
Mahonia 1:5 tincture 2.0 (a berberine containing herb)
Houttuynia 1:5 tincture 2.8
Sida acuta 1:5 tncture 1.0
Teasel root 1:3 tincture 0.8
Alchornea leaf 1:5 tincture 1.2
Cryptolepis root 1:5 tincture 1.0

ref your dosing - is that powdered herbs you are taking directly ?

how many 5g doses do you take per day?

did you have full on fibres coming out of your skin - as per Morgellons?
(i just have granules and lots of skin abnormalities - sores mainly - not seen any big or coloured fibres)

mine seems to get worse when treating initially - then slowly improve - i have heard that a lot with Morgellons
did you find that also

any idea when or how you became infected ?

Good to have another member in the UK - most here are over the other side of the pond

interesting

wow - those are pretty hefty doses - compared to tincture doses am taking - but a little hard to compare due to the different forms.

i had to start with v low doses as the herx like reactions were really strong at first - including neuropathy like symptoms - took over 1 year to work my way up to the doses above

like you its very hard to know with any certainty where it came from - both my partner and i became ill at the same time - a few months after being bitten around a dozen times each by horse flies while on a picnic in the Cotswolds. but looking back we both had fatigue in the intervening time - and my partner had severe radiculitis ( common lyme sign) a few weeks after the incident and then a kidney infection after that - so we think that was the source of it

other than that we had cats and dogs while i was growing up and grew up in a rural area always outside playing in the fields and woods all day - bitten by spiders, could have been ticks - we were not aware back then. I was even bitten by a feral cat!
have had occasional bouts of unexplained fatigue since my teens - but really looked after myself and was v fit prior to getting ill.


BTW - so far from what i have read i think the fibres are inert - latest research on the topic i have read seems to point towards morgellens being associated most with bartonella or bartonella and lyme. and Bartonella having a v unusual ability for a human bacterial infection - in that it has the ability to inject segments of its own DNA into the human cells - causing them to behave in odd ways and make stuff they would not normally make - or forms that they would not normally make - eg fibres. so my best guess is Bart is the main cause. maybe lyme needs to be in the picture also in order to supress the immune system enough - or maybe lyme is just there by coincidence as a kind of marker of arthropod borne infection.

the fibres that have been analysed seem to be keratin - so the same stuff as the outer layer of or skin is made of - nails and hair too - but its getting produced in errant ways in the skin of people with Morgellons - presumably from some kind of cellular disruption caused by the infection.

couple more questions:
-on starting treatment - did your skin get worse before it started to get better ?

-where are you buying Sida etc - i have tried a few places - but use Lymeherbs.eu for most stuff now

thanks for the input

yes i am considering gradually raising the doses - i seem to have had the most benefit at the higher end where i am now. but i am a little concerned over long term risks and its hard to work out what might be safe as the dosing between powders and tinctures is not a straight apples for apples comparison

ie you might think that taking 5g of 1:5 tincture is around 1/5th the dose of taking 5g of powdered herb
but there are a few other things going on
the alcohol / water mix as a solvent is often many times better at extracting the active components from the herbs compared to the human digestive tract - so this pre-extraction often makes tinctures more potent than you would otherwise expect due to the bioavailability.
however because each chemical component of each herb is differently soluble in the alcohol/solvent vs the human gut - there is no linear way to make equivalent doses

in many cases this has been deduced empirically over the centuries - and you can often see it reflected in the dosing in buhners books - eg knotweed - 30g of powder or 30ml of 1:5 tincture

anyway - i have mostly been sticking to his recommended max doses for tincture and a little cautious to go higher for any period of time - as you say - especially with crypto and sida

i agree - certainly many many people report massive herxes from bart - myself included - in fact some of the most sensitive people seem to have bart in the picture

interesting you skin also got worse for a time - that's reassuring

i have used Bristol botanicals - but generally prefer the products and prices from LymeHerbs.EU
i also bought sida powdered leaf from Mount Eagle herbs - quality was very nice - but price was super high
thanks for comparing notes

i know many people on the forum have lots of odd skin symptoms - but i dont know of any very active members discussing it recently - the forum has lots of people who come to read but don't post though so perhaps there are more than we think - perhaps they are just not comfortable posting about it because it seems to be so associated with delusions etc

actually, i don't know anyone with diagnosed lyme/Bart/ Morgellons in real life - just via this forum and others like it - perhaps there is some kind of UK support group on Facebook or such like - but i don't like the platform very much - just doesn't seem to lend itself to reasoned discussion. i just did a quick search and found this https://www.facebook.com/groups/2156293478015882

good luck with your ongoing treatment and stay in touch!

I second the website Garzie mentioned, in regards to buying supplements and herbs.