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New, Interesting Twist Just Adds to Lyme Confusion

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Posted 11/14/2020 2:47 AM (GMT 0)
A third blood test test I took about a month ago came back positive for a form of Borrelia I had never seen - Borrelia Miyamotoi. It, apparently, is related to the relapsing fever form of Borrelia, which I had tested positive for twice before. All three tests were sent to a lab in Belgium and performed by PCR.

Symptoms, according to the CDC include
Fever
Chills
Fatigue
Severe headache
Muscle or joint pain
Dizziness, confusion, vertigo (uncommon)
Rash (uncommon)
Shortness of breath (uncommon)
Nausea, abdominal pain, diarrhea, and anorexia (uncommon)

A recent feature in the New York Times discusses a difficult case where a patient tested negative for Lyme and many other conditions. Medical detective work by Dr. Brian Fallon of the Columbia Lyme and Tick-Borne Disease Center eventually determined that she suffered from B. Miyamotoi.

The symptoms, obviously, are very common with Lyme in general. And only in the last year have I experienced body pain to the level I have.

This just adds to the confusion of what is going on as, according to several articles I read, B. Miyamoti is not found on other Lyme tests, be it PCR, IFA, or Western Blot.

Also, best treatment for it includes azithromycin and Doxycycline. Ironically, or coincidentally, I started back on zith about 8 days ago, and my anxiety and depression have lifted by a significant amount.

Has anyone else come across this or know more about Borrelia Miyamotoi? Maybe it could help others who have had trouble, or maybe I'm grasping at straws.
Posted 11/14/2020 4:04 AM (GMT 0)
Some old forum posts on Borrelia Miyamotoi can be found at https://bit.ly/3f0evjx
Posted 11/14/2020 5:40 AM (GMT 0)
there are hundreds of strains of borrelia! we've only named and test for a handful...shoot ..even the mayo clinic has one named for themselves. my sister has 2 types at least . we know all borrelia are 3 phase multi-form spirochetes with a toxic osp that can burrow into any soft tissue . and the they all fall the same :one needs a killer for ketes and Lform and we know only a few earthly compounds kill cystic borrelia . there is also frequency for miyamotoi on my rife fwiw
Posted 11/14/2020 7:59 PM (GMT 0)
This strain of lyme has been mentioned bt lots of.ppl don't have much info on it or talk about it. I heard before they didn't know which meds to use bt then said doxy was effective as it's very similar to other strains of borellia. As for herbs or buhner protocol idk haven't read anything. If anyone has heard of any herbs will someone pls let me know
Posted 11/14/2020 11:19 PM (GMT 0)
The first LLMD I saw tested me for various tick-borne diseases through IGeneX and LabCorp, and my only positive tests were Borrelia hermsii and Mycoplasma pneumoniae. He said with certainty, "So you have Lyme disease!" He believed that someone with one or two tick-borne disease positive tests probably has multiple others, since the rate of false positives is so high, and there's so much symptom overlap. Because there are dozens of species of Borrelia known to cause disease in humans, and because ticks carry so many things at once, he was not at all surprised to see a less-common strain, a strain of which I had no symptoms, a strain prevalent in an area of the country where I'd never been.... (I did eventually test positive for strains of Boartonella, Babesia, various viruses, and Borrelia bergdorferi through other labs.)

If I am remembering correctly, B. miyamotoi is a common strain (the most common?) in Europe.

It doesn't strike me as odd that you have a Borrelia strain other than Borrelia bergdorferi. I think a lot of us probably do. I'm glad you can treat it and perhaps see some symptom relief!
Posted 11/14/2020 11:45 PM (GMT 0)
runningwild - hoping for the zith to help you. Can you add doxy to it (they are a good pair for “regular” lyme) ... or is doxy hard in the kidneys?
.... or perhaps two abx of any kind would be too much?

Hoping you can get some sustained improvement.
Posted 11/15/2020 12:18 AM (GMT 0)
God to see all your responses/thoughts/information on Borrelia Miyamotoi . I also searched this site and found a lot of old posts on it.

This is what is confusing: When I first had symptoms many years ago, I didn't have fever or bad body pain. No chills either. But now I have had a fever each until (until recently), and joint/body pain is really getting worse. Same goes for migraines.

As far as how common it is, seems it is becoming more common in the United States over the last 7-8 years. Symptoms for me started 18 years ago. But then you add in that PCR is considered pretty accurate in detecting Borrelia Miyamotoi and I had two other positives before this latest for Miyamotoi that indicated Borrelia with "relapsing fever," which is closely tied to Borrelia Miyamotoi. And saraeli made some good points about less-common strains. Then you have the PCR testing, which I don't think I had done before going to Biologix. They are the ones who sent out for the three tests I just referenced.

My hopes are this may help others who have been at a loss on tests and steer them toward PCR testing. B. Miyamotoi is common in a number of countries in Europe and, as mentioned, is becoming more common in the United States. But why the change now, and has anyone experienced changes like that in symptoms years later?

And Girlie - I can take Doxy and still have some here. It is not contradicted by kidney disease, nor is zith.
Posted 11/15/2020 7:19 AM (GMT 0)
I tested positive for b miyamotoi last year when I visited Columbia Lyme. Test was run by Imugen lab. Evidently, miyamotoi is more common in California, where I am, than is Lyme.
It's really too bad more folks are not tested for miyamotoi ... especially those who have some Lyme WB bands positive but not enough for a CDC positive test. I think I remember Columbia said their is cross reactivity between the two.
Posted 11/15/2020 3:43 PM (GMT 0)
mareish - I also read it is more common in California but is now becoming more widespread. What treatment were you placed on and did it help you?

The thought by doctors, with today's travel and changing populations of animals in different regions, that Lyme or other bacteria can only come in a certain region is antiquated. I had, at least, four doctors tell me I can't have Lyme Disease because I live in the south. This was years ago before I finally got a diagnosis.

Miyamotoi was one I had not seen in years of looking at different information. Now I can see it is more common than I thought. Trusting tests has become hard for me.
Posted 11/15/2020 4:45 PM (GMT 0)
running wild, Columbia suggested 8 weeks of Doxycycline 200mg twice a day and if that did not work, Ceftriaxone 2 grams daily via IV. Both Columbia and my LLMD recommended against the IV route because of infection and clot risks.
I did the 8 weeks of Doxycycline and saw no benefit/improvement. LLMD has had me on different combos of antibiotics since. In total I've been taking different antibiotic combos for almost 4 years. Some days I am able to go for a walk. Still gimpy and tippy but joint pain is not too bad.
In 2018 I felt the best I've felt since this all began many years ago. There were only a couple of months in '18 that I didn't feel almost "normal". This might sound odd, but going through my notes I noticed that in the spring of '18 a doc had me taking pretty high doses of Vitamin D after a very low test result. The Vitamin D was the only change at that time. So ... about 6 weeks ago I began taking 2,000 to 3,000iu of Vitamin D daily. It seems to be helping with joint issues.
When this all began I had unbearable headaches and neck pain, high fevers that came and went, drenching sweats and chills, migrating joint pains, and the dozens of other symptoms that these nasty buggers cause. Years later when finally tested by a rheumy and an ID doc, tests came back positive for Lyme, Bartonella, and Ehrlichia. Both docs told me they had to be false positives as "we don't have Lyme and Ehrlichia here". Same old BS.
Evidently, TBRF/miyamotoi, etc cause significantly worse headaches and neck pain than Lyme. I'm thankful Columbia tested for miyamotoi. I've since tested positive for it through Igenex, as well. Unfortunately, because it was first diagnosed in the U.S. in 2013, there is still little known about best treatment options, so it is usually treated the same as Lyme.
I had a CDC positive Lyme test in 2017 which I think has helped me with some doctors.
There are probably many tick borne infected folks out there without the CDC positive Lyme test who, if they had the benefit of further/more detailed testing, would find they have miyamotoi or one of it's close relatives. It is such a shame that there is not a greater awareness of the possibility of miyamotoi infection. Think how many people could receive adequate treatment as a result.
Sorry to have given such a long winded response. Glad to hear your recent antibiotic combo is of some help.
I plan to ask my LLMD about trying the Horowitz dapsone protocol. I've heard many folks are not able to tolerate it, but at this point I'm game for just about anything.
Hang in there.
Posted 11/15/2020 5:27 PM (GMT 0)
Your mentioning the "unbearable headaches and neck pain." That matches exactly what I feel. They always happen in late afternoon or early evening. I can knock it out with Excedrin Migraine, but kidney issues limit that. Not supposed to take it at all, but there are times after about 4-5 hours of being unable to function I use it anyway. Never have had drenching sweats and limited chills, but the joint pain has really come on.

I thought it had become autoimmune, but I've taken many, many tests for all different types multiple times- RA Factor, CRP, sed rate, individual anti-body tests Lups tests,,, you name it. This diagnosis of miyamotoi could make sense, but odd it took so long to find it.

Sorry to hear all you have gone through, and that is interesting about vitamin D. And yes, you heard the same old BS so many on here can relate to.
Posted 11/17/2020 4:05 AM (GMT 0)
I recently got diagnosed with miyamotoi also.

I just started the Horowitz protocol. The dapsone I didn’t start yet. I had to get blood work first to make sure I am a candidate for it. There was some kind of gene that the dr had to check for. It’s a g6pd test.
I hope this protocol works fast because I’m at my worst.
Posted 11/17/2020 4:09 AM (GMT 0)
aphysicalwreck - hoping you'll keep us posted on how you do with the Horowitz protocol. Sorry you're doing so poorly.
Posted 11/17/2020 4:19 AM (GMT 0)
Mareish

Thank you. Will do!!
Posted 11/17/2020 3:27 PM (GMT 0)
mareish - I remember why I stopped Doxy before. The last couple of days I have taken 100 mg or less (open it and lower dose) so I could ramp up. My stomach has been very unhappy since yesterday afternoon. And what you mentioned above - just thinking of the CDC and it's ignorant approach to Lyme frustrates me to no end Trying to find a way to keep taking Doxy without stomach issues (also have had a fever, which could be a herx).
Posted 11/17/2020 3:35 PM (GMT 0)
runningwild, I, too, have had stomach issues with doxy. Very common problem. My llmd prescribed a doxy that has an ingredient to make it less hard on stomach. Unfortunately, I don't remember the name.
The doxy I took after Columbia visit was not the same as prescribed by llmd, and I think that is why I had greater difficulty with it.
Posted 11/17/2020 4:20 PM (GMT 0)
runningwild, The doxy that is easier on the stomach is Doxycycline Monohydrate.
Posted 11/17/2020 6:29 PM (GMT 0)
Thanks, mareish. I had not heard of that and will check with doctor. I'll also make sure it is still good on kidneys. Do you ever still get headaches/stiff neck?
Posted 11/17/2020 8:08 PM (GMT 0)
runningwild, No, I no longer get those HORRIBLE headaches and neck pain/stiffness. They stopped when I started antibiotics.
Posted 11/18/2020 9:58 PM (GMT 0)
That is what throws me - there seems to be no answer to the stiff neck and migraines. That leads me to believe there is also something else at play, like autoimmune or kidneys. But I am glad to see your neck stiffness and headaches have stopped. Always good to see when someone has something positive happen.
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