Borrelia miyamotoi anyone?

[Jenc]

I'm a patient of KDM's (De Meirleir) for a bit over a year now.

My bloods went off to RED Labs for what he said is their new Borrelia test, which is a qPCR. It came back "positive, suspect b. miyamotoi".

Frankly, I've never heard of this, but I have spent oodles of time in Lyme tick infested areas in the US so it isn't impossible that I've gotten it.

The CDC has a view on treatment, but before I start antibiotics, I'd rather be sure that is what I have.

Has anyone else tested positive for this? If so, where were your labs done?

I reside in the UK and Public Health England is behind the times, particularly since this infection isn't native to the UK.

 

[Hip]

Borrelia miyamotoi infection I believe results in relapsing fever symptoms. Do you have those symptoms?

 

[Jenc]

You are right, I don't really think I have the symptoms.

https://www.cdc.gov/relapsing-fever/miyamotoi/index.html

I've gotten trigger happy with lab results w/o considering that...

 

[Spiderbaby]

Hi Jenc,

I havnt been tested by this method yet, but it has been suggested I undertake it.
Id be very interested to know how this test result was reported and what options
KDM has outlined to you in terms of treatment either antibiotics or herbal alternative?

 

[Jenc]

I spoke to KDM today. I mentioned that I don't have the symptoms. He said that it is now chronic, the infectious cause of my problems and that the PCR test is 92% reliable. I did not ask how he can validate the accuracy.

When I get his letter with the treatment protocol, I will post.

However, it feels to me like this is such a weird one and that there isn't a whole lot of info about a 'chronic' form of it. I don't really understand how PCR testing works. https://redlabs.be/phelix-phage-borrelia/

 

[Spiderbaby]

Thanks for your reply Jenc, Id be very interested to see what treatment KDM recommends on the basis of this test.
"Chronic" Lyme is a very controversial subject as you know, and a lot of people on here have been down the road of treatment on the basis of previous tests which were heralded as being evidence as for chronic Lyme, which ultimately proved to be next to worthless as diagnostic tool.
I have read the information you provided in that link, as well as presentations conducted by the lead academic scientists responsible for developing this way of testing.
It all seems great on the surface in terms of sensitivity and specificity of the test, however until there is peer reviewed publications into the research behind it, any information coming from the labs, the scientists and any other parties with a vested interest has to be taken with a large pinch of salt.

 

[Jenc]

I agree totally with your comments! If anything I may try to have the results validated by another lab and find (if I can) a doctor who specialises in this/tick borne illnesses if I decide that an infection by this agent is relevant.

 

[Jenc]

I got KDM's letter. It says "protocol for Lyme'

--Disulfiram 250mg , 2x 1 a day
--Serrapeptase, 500 mg , 2 x2 a day
--Lauricidin, 1/2 scoop 2x day
--oregano oil, 2 x 1/day

First of all, I don't have lyme so I don't know if he has taken his lyme protocol and given it to me, or if it is a typo by his assistants.

I am already taking ADP which is oregano, so I don't know why I need oregano oil also

At this point, until I can find a doctor who has dealt with multiple cases of B miyamotoi and / or reconfirm that I have an active virus, I am staying away from this. I don't know that my body can deal.

 

[Katka]

I got KDM's letter. It says "protocol for Lyme'

--Disulfiram 250mg , 2x 1 a day
--Serrapeptase, 500 mg , 2 x2 a day
--Lauricidin, 1/2 scoop 2x day
--oregano oil, 2 x 1/day

First of all, I don't have lyme so I don't know if he has taken his lyme protocol and given it to me, or if it is a typo by his assistants.

I am already taking ADP which is oregano, so I don't know why I need oregano oil also

At this point, until I can find a doctor who has dealt with multiple cases of B miyamotoi and / or reconfirm that I have an active virus, I am staying away from this. I don't know that my body can deal.

Hi @Jenc ,thank you for posting the protocol. Im curently waiting for the test results and a following protocol from Himmunitas. What is encouraging for me is that in his lyme protocol there is no antibiotics. It looks good to me.
do they also prescribe the disulfiram? it is very hard to get. Now it is a huge discovery in the "lyme treating" world. you just have to start low and slow. 250mg at the beggining sounds pretty rough to me.
I would encourage you to get back to them and request the protocol for your diagnosis. The tests were pretty expensive and they promised that on the basis of the tests they will prescibe the protocol.
good luck!

 

[Jenc]

Hi @Jenc ,thank you for posting the protocol. Im curently waiting for the test results and a following protocol from Himmunitas. What is encouraging for me is that in his lyme protocol there is no antibiotics. It looks good to me.
do they also prescribe the disulfiram? it is very hard to get. Now it is a huge discovery in the "lyme treating" world. you just have to start low and slow. 250mg at the beggining sounds pretty rough to me.
I would encourage you to get back to them and request the protocol for your diagnosis. The tests were pretty expensive and they promised that on the basis of the tests they will prescibe the protocol.
good luck!

Thanks for your thoughts .I did go back to KDM's office via email and the docotor's response is that I have the correct protocol.

 

[erizo]

I just got my results back from REDlabs and they were positive with B. Miyamotoi as well! I'm also wondering how reliable these results are. A bioresonance testing in Germany came back with B. Miyamotoi negative and B. lusitaniae positive, so I don't know what to think!

 

[Jenc]

I just got my results back from REDlabs and they were positive with B. Miyamotoi as well! I'm also wondering how reliable these results are. A bioresonance testing in Germany came back with B. Miyamotoi negative and B. lusitaniae positive, so I don't know what to think!

B. lusitaniae is a new one to me! Sometimes things cross react (eg it shows positive for a similar infection). However I have not heard of anyone who was tested at RED labs for B. Miyamoto that came up negative. Good luck with whatever treatment path you follow

 

[Spiderbaby]

B. lusitaniae is a new one to me! Sometimes things cross react (eg it shows positive for a similar infection). However I have not heard of anyone who was tested at RED labs for B. Miyamoto that came up negative. Good luck with whatever treatment path you follow

I have been tested twice at RED Labs by way of the Phage tests and both results came back negative (blood/urine).
As you said it depends on what treatment path is outlined for treating B. Miyamoto. Did you ever pursue a treatment for your positive result Jenc?

 

[unicorn7]

This phage test is a very new test. There are youtube video’s of Louis Tulieres who invented the test, on the website of red labs. That gives more information about how it works.

Of course this test is not validated yet and very new, but I have a lot of trust in this test. It’s a PCR test, so it’s very sensitive. It can actually tell which kind of borrelia you have. I have spoked to a lot of people who tested positive for myamotoi, but also people who had normal borellia or other ones. On the youtube video he says that they find a lot of myamotoi in patients with a late stage illness, they don’t know yet why that is. I personally think it because the regular test for borellia are negative when you have myamotoi, so these people are treated too late.
The positive thing about this test is that it actually tests negative when the borellia is gone. I have spoken to a lot of people who were negative after the antibiotic treatment. I personally was still positive after antibiotics, so I am now taking disulfiram and hopefully that will do the trick.

 

[Eliza]

I spoke to KDM today. I mentioned that I don't have the symptoms. He said that it is now chronic, the infectious cause of my problems and that the PCR test is 92% reliable. I did not ask how he can validate the accuracy.

When I get his letter with the treatment protocol, I will post.

However, it feels to me like this is such a weird one and that there isn't a whole lot of info about a 'chronic' form of it. I don't really understand how PCR testing works. https://redlabs.be/phelix-phage-borrelia/

as I understand it, they don’t look for dna of the pathogen itself, but rather dna of the phages (hunters). Every phage has a specific pathogen or hunts for. After qPRC for phages they add sequencing to rule out false positives.
It makes sense, though I would like to know more too before I go any further with this.

 

[max_yazhbin]

I'm a patient of KDM's (De Meirleir) for a bit over a year now.

My bloods went off to RED Labs for what he said is their new Borrelia test, which is a qPCR. It came back "positive, suspect b. miyamotoi".

Frankly, I've never heard of this, but I have spent oodles of time in Lyme tick infested areas in the US so it isn't impossible that I've gotten it.

The CDC has a view on treatment, but before I start antibiotics, I'd rather be sure that is what I have.

Has anyone else tested positive for this? If so, where were your labs done?

I reside in the UK and Public Health England is behind the times, particularly since this infection isn't native to the UK.

https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/, please let me know if this is helpful

 

[newbie_85]

@Jenc have you started this treatment, did it help you?