Dr Patterson on Long Haul Covid vs ME/CFS

[GillianS]

I talked to 8 ME/CFS patients that had this surgery done, none improved but some went off even worse

Yes I’m aware of potential regression from stories I have read previously of others experiences. It wouldn’t stop me continuing.
I am being poisoned by mine and there is nothing more clear to me in the world that needs to happen. I will put in the safety measures I need to, to hopefully get a good outcome. People often share the pain and devastation more than the joy. I hope to report back with joy eventually.

 

[mitoMAN]

That's interesting.

How did you find these 8 ME/CFS patients with jaw bone cavitations? Is there a Facebook group or similar? I believe these cavitations are not very common.

I read that jaw bone cavitations can be caused when the wisdom teeth are removed without cleaning out the periodontal ligament from the bone cavity (it's this ligament which then prevents the bone from healing properly, so you get a hole).

yes a German ME/CFS group. There is a doctor specialised in this operation in Germany, very famous, so lots of ME/CFS put hope in recovering. None did so far.

IMD Berlin has their own page about it:
https://www.imd-berlin.de/fachinfor...ionen/rantes-bedeutung-bei-nico-osteonekrosen

Dr. Johann Lechner made studies about it.

 

[deeterm]

you can add me to the unsuccessful cavitation surgery list. No worsening though

 

[GillianS]

you can add me to the unsuccessful cavitation surgery list. No worsening though

That’s a shame, how come unsuccessful?

 

[deeterm]

no improvement in symptoms

 

[mitoMAN]

That’s a shame, how come unsuccessful?

as said before, noone I talked to ever had improvements with this surgery on ME/CFS symptoms

 

[pattismith]

F@ck

some other studies suggest interleukine 1β is involved in ME/CFS.

Exosome-associated Mitochondrial DNA is Elevated in Patients with ME/CFS and Stimulates Human Cultured Microglia to Secrete IL-1β | Phoenix Rising ME/CFS Forums

There is another way to check if you have a problem with interleukine 1β neuroinflammation: doing a short trial with Colchicine which is a Caspase 1 inhibitor.

Caspase 1 is necessary to activate pro-IL-1 beta to active IL-1 beta:

Exosome-inflammasome crosstalk and their roles in inflammatory responses (thno.org)

 

[Zahr82]

how does he know it's not ME/CFS? (seems like a good descriptor of what I have) seeing as we don't really know what ME is yet how can he say what it's not?

I'm of the opinion LC is ME, about 80 percent of the time. But extra things like clotting , chest and lung stuff

 

[Martin aka paused||M.E.]

some other studies suggest interleukine 1β is involved in ME/CFS.

Exosome-associated Mitochondrial DNA is Elevated in Patients with ME/CFS and Stimulates Human Cultured Microglia to Secrete IL-1β | Phoenix Rising ME/CFS Forums

There is another way to check if you have a problem with interleukine 1β neuroinflammation: doing a short trial with Colchicine which is a Caspase 1 inhibitor.

Caspase 1 is necessary to activate pro-IL-1 beta to active IL-1 beta:

View attachment 48249

Exosome-inflammasome crosstalk and their roles in inflammatory responses (thno.org)

Yep it’s always elevated in my blood

 

[pattismith]

MCP-1 is my issue!

I don't know if you already discussed it but Thiamine may be usefull against CCL2

Dysregulated Th17 cells and IL-17 synthesis in the skin, synovial space and endothelium promote synthesis of pro-inflammatory cytokines namely IL-1β, TNF and IL-6 and neutrophil chemoattractants such as IL-8, CCL20 and CCL2 as observed in psoriasis.
.....
However, both clinical and in vitro evidence collectively support the potential of thiamine as a therapeutic agent in attenuating the Th17 proinflammatory response.

Frontiers | Repurposing Treatment of Wernicke–Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile (frontiersin.org)

 

[Spiderbaby]

For those of you interested and want to compare Patterson's cytokine profiles to another. IMD Berlin now appear to be offering sCD40L as part of their Covid Inflammation Panel.

https://www.imd-berlin.de/fileadmin.../Anforderungsschein_COVID-19_Selbstzahler.pdf

Along with VEGF, Rantes and other interlukins offered in their Specialised Immune Diagnosic testing, it should offer some piece of mind to those of us who have done Patterson's tests but are still on the fence about trying things like Maraviroc.

My Patterson results showed high sCD40L (26k < 2086), VEGF (91 < 8), but CCL4 (18 <8), CCL5 (RANTES) 17k <10k) were only somewhat elevated. However I have long term Lyme so who knows how that influences the results, certainly not their CCTC "physicians" who freely admitted he didnt know much about Borreila during a tele consultation.

Even though I did the testing on the back of a vaccine induced setback, I am still quite suspicious of the results and some of the reference ranges used. Ive had CCL4 (MIP-1Beta) done 6 months ago with Redlabs, results: 18 Incell, 9 Redlabs, but Incell's upper reference range is 8, where as Redlabs is 155.

I know different labs use different ranges, but they are mostly all reported in pg/ml, so I wonder are Patterson's ranges very conservative to get people showing positive on his cyokine panel and then on his gravy train.

I would certianly like to get my RANTES tested independently elsewhere before shelling out crazy money for Maraviroc. I have access to a supply of Atorvastatin and I am trialing that, which from what I have researched should lower CCL5 as well as the other vascular markers which are high, even if they could be more related to Lyme than post vax/long covid.

 

[Kafka82]

For those of you interested and want to compare Patterson's cytokine profiles to another. IMD Berlin now appear to be offering sCD40L as part of their Covid Inflammation Panel.

https://www.imd-berlin.de/fileadmin.../Anforderungsschein_COVID-19_Selbstzahler.pdf

Along with VEGF, Rantes and other interlukins offered in their Specialised Immune Diagnosic testing, it should offer some piece of mind to those of us who have done Patterson's tests but are still on the fence about trying things like Maraviroc.

My Patterson results showed high sCD40L (26k < 2086), VEGF (91 < 8), but CCL4 (18 <8), CCL5 (RANTES) 17k <10k) were only somewhat elevated. However I have long term Lyme so who knows how that influences the results, certainly not their CCTC "physicians" who freely admitted he didnt know much about Borreila during a tele consultation.

Even though I did the testing on the back of a vaccine induced setback, I am still quite suspicious of the results and some of the reference ranges used. Ive had CCL4 (MIP-1Beta) done 6 months ago with Redlabs, results: 18 Incell, 9 Redlabs, but Incell's upper reference range is 8, where as Redlabs is 155.

I know different labs use different ranges, but they are mostly all reported in pg/ml, so I wonder are Patterson's ranges very conservative to get people showing positive on his cyokine panel and then on his gravy train.

I would certianly like to get my RANTES tested independently elsewhere before shelling out crazy money for Maraviroc. I have access to a supply of Atorvastatin and I am trialing that, which from what I have researched should lower CCL5 as well as the other vascular markers which are high, even if they could be more related to Lyme than post vax/long covid.

You can't compare different labs - I tested both twice with incellDX and IMD berlin. IncellDX use Flow Cytometry for their tests while IMD use ELISA assays. Ref ranges and sensitivity are quite different between these two tests. For example my Rantes has been consistenlty high at 2 different labs suing FLowCYtometry but it comes normal range at IMD Berlin with ELISA assay.

I am currently on statins and used IVM before with some mild success but now going to add some Maraviroc.

 

[Spiderbaby]

You can't compare different labs - I tested both twice with incellDX and IMD berlin. IncellDX use Flow Cytometry for their tests while IMD use ELISA assays. Ref ranges and sensitivity are quite different between these two tests. For example my Rantes has been consistenlty high at 2 different labs suing FLowCYtometry but it comes normal range at IMD Berlin with ELISA assay.

I am currently on statins and used IVM before with some mild success but now going to add some Maraviroc.

Thank you for the reply. Where did you get the second Rantes test done by flow cytometry?

 

[Spiderbaby]

For anyone still interested the IMD Berlin comparative tests for sCD40L, VEGF, and RANTES all came back within normal ranges. I had taken a statin for 8/9 weeks when those bloods were taken so who knows whether that influenced the reduction in levels, or whether they would have been within IMDs ranges from the get go.

Either way the RANTES test was unremarkable, and not something I plan on rushing out to spend 800e per month on Maraviorc for.

Regardless of whether the methods of testing were different, there has to be some replicability between the panel offered by Patterson and those similar tests are offered by different labs.

As for referecnes ranges, I have seen three different sets reference of ranges from labs used by Patterson for his cytokine panel. I dont know how they can ensure conformaity between them, if you might be positive for RANTES at one lab and negative at another.

Good luck to anyone that wants to try Maraviroc, I think my dwindling finances will be spent better elsewhere.

 

[Garz]

i could be wrong - but i thought the whole premise of IncellDX was single cell testing - rather than testing circulating cytokines ?