My treatment for Borrelia miyamotoi

[newbie_85]

After almost 10 years I have been finally diagnosed to have Borrelia miyamotoi. My plan will include 6 weeks of I.V. antibiotics (Ceftazidim, Flagyl, Doxycycline) followed by Disulfiram. I am looking forward to see if I feel better after it. I will write updates once I start. I also read in Buhner book (2nd edition) that andrographis is effective for Borrelia miyamotoi so I may try this as well before I can start with treatment. Pray for me please.

 

[lateM98]

I would suggest you wait and try testing again, perhaps in a different lab. The thing is, If you repeat a test enough times you will eventually get a false positive. I suggest watching this video by an MD surgeon (If money was no object, should you run every medical test?)

 

[newbie_85]

I don't understand your logic. Basically you are suggesting me to test in different labs with unreliable methods so many times until I don't get false negative.

The test I took is currently the most accurate, it is very specific and the lab says they don't have false negatives. The test doesn't rely on antibodies but on DNA of “phages”. From what I understand there can not be wrong phages, phages are specific to their host. It is not like antibodies which are not necessary absolutely specific to disease. This is why 40% of patients with Lupus and other rheumatic diseases test positive on the first tier ELISA test.

So it could be only lab technical or human error to show false positive, they also perform a double check. Sure you will say that errors are always possible, but if there are 99.9% chances that the test is accurate I think I will take a chance to the therapy. It is more safe than risking to not take it just because there is only 0.1% of chance for the error. If there is 99.9% against 0.1% which one will you take? Number 99.9 is just as example, I don't have actual number. At least this is how I understand it. If you have any evidence about phage tests showing otherwise I would appreciate it.

 

[Cipher]

@newbie_85 Have you asked Red Labs what percentage of healthy controls test positive?

 

[newbie_85]

My friend asked Red Labs if there are any false positives and they wrote him that they don't have any false positives because they perform a double check on them.

 

[Judee]

Please keep us up to date. I'm excited for you. Just know that I have heard you may feel worse before you feel better.

 

[Alesh]

There is nothing like "chronic Lyme disease", only "post Lyme syndrome" exists. Taking antibiotics is futile and preposterous.

 

[Cipher]

There is nothing like "chronic Lyme disease", only "post Lyme syndrome" exists. Taking antibiotics is futile and preposterous.

There's an overwhelming amount of research that has been done both in vitro and in vivo that contradicts your statement:

• Berndtson, Keith (Apr 23, 2013). "Review of evidence for immune evasion and persistent infection in Lyme disease". International Journal of General Medicine. doi:10.2147/ijgm.s44114. PMC 3636972 
  
  . PMID 23637552.

• Stricker, Raphael B.; Johnson, Lorraine (Apr 22, 2013). "Persistent infection in chronic lyme disease: does form matter?". Research Journal of Infectious Diseases. 1 (1): 2. doi:10.7243/2052-5958-1-2. ISSN 2052-5958.

• Sapi, Eva; Bastian, Scott L.; Mpoy, Cedric M.; Scott, Shernea; Rattelle, Amy; Pabbati, Namrata; Poruri, Akhila; Burugu, Divya; Theophilus, Priyanka A. S. (Oct 24, 2012). "Characterization of Biofilm Formation by Borrelia burgdorferi In Vitro". PLOS ONE. 7 (10): e48277. doi:10.1371/journal.pone.0048277. ISSN 1932-6203. PMC 3480481 
  
  . PMID 23110225.

• Caskey, John R.; Hasenkampf, Nicole R.; Martin, Dale S.; Chouljenko, Vladimir N.; Subramanian, Ramesh; Cheslock, Mercedes A.; Embers, Monica E. (2019). "The Functional and Molecular Effects of Doxycycline Treatment on Borrelia burgdorferi Phenotype". Frontiers in Microbiology. 10. doi:10.3389/fmicb.2019.00690. ISSN 1664-302X. PMC 6482230 
  
  . PMID 31057493.

• Lacout, Alexis; Hajjam, Mostafa El; Marcy, Pierre-Yves; Perronne, Christian (Jul 1, 2018). "The Persistent Lyme Disease: "True Chronic Lyme Disease" rather than "Post-treatment Lyme Disease Syndrome"". Journal of Global Infectious Diseases. 10 (3): 170. doi:10.4103/jgid.jgid_152_17. ISSN 0974-777X. PMC 6100330 
  
  . PMID 30166820.

• Middelveen, Marianne J.; Sapi, Eva; Burke, Jennie; Filush, Katherine R.; Franco, Agustin; Fesler, Melissa C.; Stricker, Raphael B. (Jun 2018). "Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease". Healthcare. 6 (2): 33. doi:10.3390/healthcare6020033. PMC 6023324 
  
  . PMID 29662016.

• Sharma, Bijaya; Brown, Autumn V.; Matluck, Nicole E.; Hu, Linden T.; Lewis, Kim (Aug 1, 2015). "Borrelia burgdorferi, the Causative Agent of Lyme Disease, Forms Drug-Tolerant Persister Cells". Antimicrobial Agents and Chemotherapy. 59 (8): 4616–4624. doi:10.1128/AAC.00864-15. ISSN 0066-4804. PMID 26014929.

• Feng, Jie; Auwaerter, Paul G.; Zhang, Ying (Mar 25, 2015). "Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline". PLOS ONE. 10 (3): e0117207. doi:10.1371/journal.pone.0117207. ISSN 1932-6203. PMC 4373819 
  
  . PMID 25806811.

• Locke, Jonathan W. (Jun 2019). "Complement Evasion in Borrelia spirochetes: Mechanisms and Opportunities for Intervention". Antibiotics. 8 (2): 80. doi:10.3390/antibiotics8020080. PMC 6627623 
  
  . PMID 31200570.

• Wagemakers, A.; Visser, M. C.; de Wever, B.; Hovius, J. W.; van de Donk, N. W. C. J.; Hendriks, E. J.; Peferoen, L.; Muller, F. F.; Ang, C. W. (Aug 2, 2018). "Case report: persistently seronegative neuroborreliosis in an immunocompromised patient". BMC Infectious Diseases. 18 (1): 362. doi:10.1186/s12879-018-3273-8. ISSN 1471-2334. PMC 6090844 
  
  . PMID 30071836.

• Rudenko, Natalie; Golovchenko, Maryna; Kybicova, Katerina; Vancova, Marie (May 16, 2019). "Metamorphoses of Lyme disease spirochetes: phenomenon of Borrelia persisters". Parasites & Vectors. 12 (1): 237. doi:10.1186/s13071-019-3495-7. ISSN 1756-3305. PMC 6521364 
  
  . PMID 31097026.

• Aslam, Bilal; Nisar, Muhammad Atif; Khurshid, Mohsin; Farooq Salamat, Muhammad Khalid (Sep 15, 2017). "Immune escape strategies of Borrelia burgdorferi". Future Microbiology. 12 (13): 1219–1237. doi:10.2217/fmb-2017-0013. ISSN 1746-0913.

• Maloney, Elizabeth L. (Nov 2016). "Controversies in Persistent (Chronic) Lyme Disease". Journal of Infusion Nursing. 39 (6): 369–375. doi:10.1097/NAN.0000000000000195. ISSN 1533-1458. PMC 5102277 
  
  . PMID 27755213.

• Cabello, Felipe C.; Godfrey, Henry P.; Bugrysheva, Julia V.; Newman, Stuart A. (2017). "Sleeper cells: the stringent response and persistence in the Borreliella (Borrelia) burgdorferi enzootic cycle". Environmental Microbiology. 19 (10): 3846–3862. doi:10.1111/1462-2920.13897. ISSN 1462-2920. PMC 5794220 
  
  . PMID 28836724.

• DeLong, Allison K.; Blossom, Barbara; Maloney, Elizabeth L.; Phillips, Steven E. (Nov 2012). "Antibiotic retreatment of Lyme disease in patients with persistent symptoms: A biostatistical review of randomized, placebo-controlled, clinical trials". Contemporary Clinical Trials. 33 (6): 1132–1142. doi:10.1016/j.cct.2012.08.009. ISSN 1551-7144.

• Sapi, Eva; Kasliwala, Rumanah S.; Ismail, Hebo; Torres, Jason P.; Oldakowski, Michael; Markland, Sarah; Gaur, Gauri; Melillo, Anthony; Eisendle, Klaus (Dec 2019). "The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease". Antibiotics. 8 (4): 183. doi:10.3390/antibiotics8040183. PMC 6963883 
  
  . PMID 31614557.

 

[Hip]

There is nothing like "chronic Lyme disease", only "post Lyme syndrome" exists. Taking antibiotics is futile and preposterous.

According to this paper, Borrelia miyamotoi disease (BDM) is not the same as Lyme disease. And BMD is successfully treated with oral doxycycline.

 

[duncan]

According to this paper, Borrelia miyamotoi disease (BDM) is not the same as Lyme disease. And BMD is successfully treated with oral doxycycline.

Oh dear. Well, there you go. One is supposedly relapsing Borrelia; the other - despite patients reports - is not.

And STARI?

Some say, focus on Borrelia and compounding infections. It's the stew, not the ingredient by itself.

Whose name is NOT amongst the authors? Hint, he used to be the world's foremost authority on Babesiosis, but he gave up much of that luxury for research into the lowly Borrelia....

 

[JES]

My friend asked Red Labs if there are any false positives and they wrote him that they don't have any false positives because they perform a double check on them.

There is no way to get rid of false positives by doing a double check or at least I'm not aware of. If there is, test labs all over the world would surely like to know about that methodology, as false positives are for example a concern with coronavirus antibody tests.

I assume by "double check" they mean performing a similar test again. This something called two-tier testing that is done in traditional Lyme testing to improve the specificity (sensitivity = the proportion of positives that are correctly identified, specificity = the proportion of negatives that are correctly identified). So if a patient tests positive using ELISA, they repeat with Western Blot. This improves the specificity, but doesn't get rid of false positives.

 

[duncan]

So if a patient tests positive using ELISA, they repeat with Western Blot. This improves the specificity, but doesn't get rid of false positives.

Nor false negatives. But we are talking miyamotoi, not Bb. One has been characterized as a relapsing fever; the other - so far at least - not. So the 2-T is a disputed metric "agreed" to for Lyme back in 1994. But prior to the Dearborn concensus, researchers and clinicians were testing for Lyme all the way back to the mid '80's. Testing for miyamotoi only recently became available.

 

[Hip]

The test that Red Labs use for Borrelia looks very interesting and clever. This new test was developed at the University of Leicester.

As @newbie_85 mentioned, instead of detecting Borrelia genes, the test instead detects the genes of the bacteriophages which can infect different species of Borrelia (bacteriophages, also called phages, are viruses that infect bacteria).

I am guessing that various bacteriophages are added to the patient's blood sample, and if a certain species of Borrelia is present, the appropriate bacteriophage will infect the Borrelia bacteria in the sample, and like any virus, the bacteriophage will make thousands of copies of itself inside the Borrelia bacterial cells. These copies will then burst out of the cell. Having so many bacteriophages in the blood sample makes it much easier to detect by PCR.

 

[unicorn7]

I think they are testing with PCR on the phages. Because there are 1000 phages for one bacteria, the chance of getting a positive PCR is a lot bigger, than when you would do PCR on borrelia itself. Also because the borellia bacteria is in the tissue and not in the blood. The phages are apparently in the blood.

They are actually able to test on the different kinds of Borellia, have already heard from different people that they had different subspecies (borellia hermsi or myamotoi).

PCR tests can be false negative is the sample doesn’t have the DNA if the virus or bacteria in it. In this case, it’s apparently pretty sensitive, so not many false negatives. I know that they have tested on a lot of other species, to see if there was cross-reaction, but I don’t know exactly how specific the test is. Every test has false negatives and false positives.

I always tested negative on every lyme test, even though it seemed very likely that I would have lyme.
This test tested me positive on borellia myamotoi. I was very sceptical, but decided to do the lyme treatment, so I would never have any regrets later.
I have just finished the last treatment (did the 6 weeks of antibiotics, followed by 3 months of disulfiram). It took me 11 months in total, but I have no regrets. I am so much better at the moment, I don’t know yet for sure if it’s going to last of course, but I would definitely do it again.

 

[Hip]

I am so much better at the moment, I don’t know yet for sure if it’s going to last of course, but I would definitely do it again.

Would you be able to quantify that improvement in health you obtained from antibiotics and disulfiram, in terms of where you were before treatment on the ME/CFS scale of very severe, severe, moderate, mild, remission, and where you are now on that scale after treatment (see the link for a description of the scale).

 

[duncan]

Ever since miyamotoi showed up in New Jersey several years back, treatment recommendations have mirrored those for Lyme. Curiously, the spread of the former could eclipse the latter since miyamotoi is transovarial, whereas Lyme purportedly is not.

 

[unicorn7]

Would you be able to quantify that improvement in health you obtained from antibiotics and disulfiram, in terms of where you were before treatment on the ME/CFS scale of very severe, severe, moderate, mild, remission, and where you are now on that scale after treatment (see the link for a description of the scale).

Yes, so I still wanted to do a post about my complete treatment. In short, gut and immune treatment got me from, i think, in between moderate and severe? On my worst, I got out once a week and had to recuperate for 5/6 days after. Mostly housebound, with lost of sleep and resting in bed, but not bedbound.

Before lyme treatment, I had just started working again for half a year. I work 10 hours a week and had given up pretty much anything for that. So two workdays, complete restday before and after and on a good week I could go out once or twice other than for work.

After treatment, I would say I am between mild and remission, but it has just been this good for the last two months, so of course, it can still be a fluke or I can have a fall back.
For example, this week I have worked about 20 hours ( at home of course, so that makes easier), went grocery shopping once and went out four times to do a few hours of fun activities!
Definitely not remission yet, but maybe I just have to build up from doing nothing for years?

 

[percyval577]

There's an overwhelming amount of research that has been done both in vitro and in vivo that contradicts your statement:

Thanks for the literature.

The crucial question is though, if removing the borrelia would lead to the free of symptoms.

And the answere may be, no, at least abx don´t seem to help.

Symptoms may well arise from manganese, which can be hugely found in them, at least shown here:
Aguirre et al 2013

I tested positive, and I have slow but steady success with a low manganese diet (I also improved the regime in a neurological thought respect, though it´s work in progress). I don´t mind about the bacteria itself, they probably already have gone after five years, I guess.

 

[Cipher]

I am guessing that various bacteriophages are added to the patient's blood sample, and if a certain species of Borrelia is present, the appropriate bacteriophage will infect the Borrelia bacteria in the sample, and like any virus, the bacteriophage will make thousands of copies of itself inside the Borrelia bacterial cells. These copies will then burst out of the cell. Having so many bacteriophages in the blood sample makes it much easier to detect by PCR.

From what I understand from their patent, it seems like they don't actually add phages to the blood sample, but analyze if any phages exist in the sample. It seems like they mean a high percentage of people infected with Borrelia ssp. will "acquire" the specific phage for that particular pathogen, even in the early phase. I have a hard time understanding how this is possible, but what do I know.

Finally, this test is also the very best choice for the early detection (remember that antibodies need several weeks to show up….).

(source)

My friend asked Red Labs if there are any false positives and they wrote him that they don't have any false positives because they perform a double check on them.

According to some presentations I've found online, 48 % of healthy controls test positive using this phage Borrelia test:

Source:
Presentation 1
Presentation 2

Either the test got a massive false-positive rate, or 48 % of healthy people have a chronic, but asymptomatic borrelia infection. Either way, it seems like a positive test result doesn't tell you very much.

 

[Cipher]

The crucial question is though, if removing the borrelia would lead to the free of symptoms.

And the answere may be, no, at least abx don´t seem to help.

Well, most antibiotics have a hard time killing off the antibiotic-tolerant persister cells. However, disulfiram for example have been shown to exhibit effective activity against B. burgdorferi persisters both in vitro and in vivo. There are several case-reports of people getting remission from chronic Lyme disease after being treated with disulfiram.