Any ideas for Lyme/Morgellons?

sorry to hear you are going through this

this lady seems to specialise in treating Morgellons https://gingersavely.com/
she has some papers and publications that are worth reading

as far as i have been able to determine - it seems to be a manifestation of lyme and perhaps bartonella when they are combined - so if it were me - i would pursue treatment directed at those.

i think bartonella is involved as it is one of the few bacteria that are able to insert DNA into the host cells - and it seems like something has interfered with the cells instructions - which is a likely explanation for the keratin fibres ( there is non-sense out there on the internet about them having insect DNA etc - but they are made of the same substance as our hair and finger nails).

Treatment typically needs to be sustained long term - as borrelia in particular has a tendency of coming back - and bartonella is hard to turn around.

i hope its of some help
all the best

When I had morgellons I found the piece that turned it around was seeing a biological dentist even though I didnt think I had dental issues. Have you had dental work?
After that-many rounds of meds like you did

Sun exposure, environmental irritants (from gardening), and hot tubs are common triggers of mast cell activation syndrome, which can cause rashes and be tough to calm down once the condition has developed. MCAS is common with tick-borne disease and some other chronic illnesses (including long COVID). I understand that you probably have multiple things going on, but perhaps treatments aimed at stabilizing mast cells could help?

Generally people find it helpful to avoid triggers, follow a low-histamine diet, and take supplements and drugs that stabilize mast cells until a flare has passed (and also sometimes indefinitely until whatever triggered the MCAS has been addressed - infections, trauma, limbic system dysfunction, anxiety, a strong allergic reaction, etc.).

Triggers: Sun, pollen, mold, chemical irritants, strong sensory input, stress, high-histamine foods and beverages, exertion, heat and cold, hot showers and saunas, friction, herxing, toxins in body products and cleaning products, infections, etc.

Mast cell stabilizers: curcumin, quercetin, bromelain, stinging nettle, DAO, cromolyn sodium, montelukast, ketotifen, H1 blockers (like Claritin), H2 blockers (like Pepsid), etc.

High-histamine foods and beverages: ferments (yogurt, vinegar, kombucha, kimchi, sauerkraut, kefir, sourdough, beer, wine, other alcohol, etc.), tomatoes, citrus, high-histamine probiotic strains, lion's mane mushroom, chocolate, coffee, etc.

Mast cell activation symptoms: digestive upset, brain fog, anxiety, tingling, burning, peripheral neuropathy, twitches, itching, dizziness, flushing, POTS and other dysautonomia symptoms, tachycardia, temperature dysregulation, rashes, hives, allergy-like reactions, runny nose, scratchy or sore throat, lung irritation, eye irritation, and many other things.

Another treatment that I found immensely helpful was limbic system retraining, which basically "trains" the brain to stop sending signals to mast cells that they need to over-react to stimuli.

Just some ideas for you, in case these might bring any relief!

Probably well worth seeing a biological dds-at least get a dental thermography=cheap and easy.
You should also have knowledge of the dental meridian chart=was spot on for me

MyJourney101 said...
Thanks Garzie…I will definitely check that link out.

just a heads up

i saw Ginger Savely got some bad press a while ago - but my guess is she got into trouble with the medical board for doing things to try to help her patients - this type of thing happens a lot with LLMD's - as medical boards do not understand these diseases and don't like doctors using extended antibiotic treatments. some states pursue them aggressively.

so, it may be to her credit - rather than a black mark against her
past famous and well respected LLMD's have been dragged through this process

all the best

In response to this:

bongomongo said...
There is no "morgellons disease" That took off bigtime after a nurse in Texas started the CEHF and Ralph Stricker who was fired from Stanford for lying on studies sent to NEJM. Stricker was president of ILADS for 4 years and promoted the heck out of that junk science.

What people are suffering from is skin cancer caused by a bartonella infection and the fibers are a common symptom in a lot of different cancers , that's called Filament Reorganization and it involves mutations in the genes that control the Keratin Intermediate Filaments.

https://www.mdpi.com/2073-4409/8/5/497
"Intermediate Filaments as Effectors of Cancer Development and Metastasis: A Focus on Keratins, Vimentin, and Nestin"

"However, there are also characteristic alterations in IF gene expression and protein regulation."

IF means Intermediate Filament and what happens in cancer is that they depolymerize.

https://pubmed.ncbi.nlm.nih.gov/23359593/

"Depolymerization of cytokeratin intermediate filaments facilitates intracellular infection of HeLa cells by Bartonella henselae"

This happens because Bartonella causes Cancer and cause a lot of different mutations.

https://academic.oup.com/femsre/article/36/3/563/634924?login=false

"Persistence of Bartonella spp. stealth pathogens: from subclinical infections to vasoproliferative tumor formation"

Bartonella causes mutations by transferring DNA.

https://pubmed.ncbi.nlm.nih.gov/21844337/

"Conjugative DNA transfer into human cells by the VirB/VirD4 type IV secretion system of the bacterial pathogen Bartonella henselae"

"The sole bacterium known to naturally transfer DNA into eukaryotic host cells via a T4SS is the plant pathogen Agrobacterium tumefaciens. Here we demonstrate T4SS-mediated DNA transfer from a human bacterial pathogen into human cells. We show that the zoonotic pathogen Bartonella henselae can transfer a cryptic plasmid occurring in the bartonellae into the human endothelial cell line EA.hy926"

There is no "Morgellons" that was created by people who didn't know how to diagnose what they were looking at. A good Oncologist would know all about Filament reorganization in cancer because it is a common symptom in a lot of different cancers.

So what did the "Charles Holman Foundation" and Ginger Savely actually accomplish? they took a well defined type of skin cancer which is Basal Cell Carcinoma (BCC) and Squamis Cell Carcinoma (SCC) and turned it into a mystery disease so sufferers would be misled and not seek proper care.

The nurse in charge of that foundation even made a movie about herself that made a lot of money for her. It amounts to nothing more than fraud and many people have been misled by her, Me included until I figured it out.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5364536/

"Intermediate filament reorganization dynamically influences cancer cell alignment and migration"

bongomongo are you implying that people with Morgellon's have cancer? I don't believe that's accurate at all.

Don't you think that would have been widely observed by now, given that in that hypothetical situation these patients would all have ignored their own cancers?

Pretty easy statistic to observe given the most likely outcome of not treating a cancer....

but Bongo

Rainy makes a fair point - Keratin fibrils inside cells in healthy people are on the nanometre scale - and the reorganisation in the paper quoted is as far as i can see still at that nanometre scale.

yes cancerous growths can include fibres - and hard bony tissue - and may other substances resulting from the runaway mutations in the DNA in the cancerous cells

but the reverse is not necessarily true - ie all cells making fibres are not necessarily cancerous

even if bartonella is modifying the cells instructions in such a way that much larger fibres are formed - that does not not necessarily qualify as cancer in the normal sense of the word - as in, an out of control replication of cells forming a tumour.

from what is documented in case reports, the people who have this condition can have many many fibrous growths coming out of their skin - i have even seen "bird nest" style growths half an inch across that one person dug out of their own arm - and yet when successfully treated with antibiotics - not anticancer drugs or radiotherapy - their skin ejects or re-absorbs these fibres and they heal.

had that been a person with dozens of skin cancers all over them - wouldn't we expect at least some of them to die, without chemo or similar treatment, from rather obvious terminal metastasis.
we know the vast majority are not getting anti cancer treatment - as most are turned away from doctors offices told its all in their head.

are you perhaps using a different definition of "cancer" than most of us here would recognise, for extra impact ?

I personally know someone who had Morgellons - she treated Lyme and Bartonella extensively and no more Morgellons