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Diagnosed with TBRF

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Posted 5/22/2023 1:44 PM (GMT -5)
Hi, I was diagnosed with Tick Borne Relapsing Fever about 9 months ago and I have been taking antibiotics for a while. First doxycycline which was really hard on my body so that only lasted like 1.5 months and now I've been on Azythromycin for like 3 months and I have to say, I'm not noticing any change in my symptoms and in fact I'm having cycles of herxing I guess or some kind of intense pain in my muscles where everything is so stiff and tight, particularly in my neck and hands. I was diagnosed with 4 cervical disc herniations and the doctors seem super focused on that, but that was 2 years ago and the MRI suggests they are healing but my symptoms don't seem to improve so I'm wondering if it's the Lyme/TBRF.

I was told TBRF is basically a version of Lyme with similar symptoms and treatment. My doctor is really hard to get a hold of and I don't know a better Lyme doctor but I'm wondering if I'm doing the right treatment or if there's anything I need to be aware of? I need to find a new doctor, one who is available and communicative, but in the meantime I need to start understanding if I'm wasting my time or doing the right things for treatment. I am in Colorado if anybody knows a good Lyme doctor out here I could contact.

Thanks a lot.
Posted 5/22/2023 3:24 PM (GMT -5)

PathToHealing said...
Hi, I was diagnosed with Tick Borne Relapsing Fever about 9 months ago and I have been taking antibiotics for a while. First doxycycline which was really hard on my body so that only lasted like 1.5 months and now I've been on Azythromycin for like 3 months and I have to say, I'm not noticing any change in my symptoms and in fact I'm having cycles of herxing I guess or some kind of intense pain in my muscles where everything is so stiff and tight, particularly in my neck and hands. I was diagnosed with 4 cervical disc herniations and the doctors seem super focused on that, but that was 2 years ago and the MRI suggests they are healing but my symptoms don't seem to improve so I'm wondering if it's the Lyme/TBRF.

I was told TBRF is basically a version of Lyme with similar symptoms and treatment. My doctor is really hard to get a hold of and I don't know a better Lyme doctor but I'm wondering if I'm doing the right treatment or if there's anything I need to be aware of? I need to find a new doctor, one who is available and communicative, but in the meantime I need to start understanding if I'm wasting my time or doing the right things for treatment. I am in Colorado if anybody knows a good Lyme doctor out here I could contact.

Thanks a lot.

Welcome to the forum.

Hopefully someone from or near Colorado will see this post and can recommend a Lyme doc for you.

If not - you can email me and I may have one on my Lyme doc list.
Posted 5/22/2023 4:22 PM (GMT -5)
PTH - Which test did you take that showed TBRF (PCR, immunoblot, western blot, etc)? Not doubting but curious.

TBRF does have a lot of different symptoms from throwing up and fever to body aches. I have had that diagnosis with 5 different tests, but my symptoms don’t seem to match up.

Those are the antibiotics that are recommended, but like you mentioned, side effects can be tough, especially on stomach. I’m trying Bicillin again now.
Posted 5/23/2023 11:38 AM (GMT -5)

Girlie said...
Welcome to the forum.

Hopefully someone from or near Colorado will see this post and can recommend a Lyme doc for you.

If not - you can email me and I may have one on my Lyme doc list.

Thanks! I will probably DM you about the list, that would be super helpful!!

running wild said...
PTH - Which test did you take that showed TBRF (PCR, immunoblot, western blot, etc)? Not doubting but curious.

TBRF does have a lot of different symptoms from throwing up and fever to body aches. I have had that diagnosis with 5 different tests, but my symptoms don’t seem to match up.

Those are the antibiotics that are recommended, but like you mentioned, side effects can be tough, especially on stomach. I’m trying Bicillin again now.

Good to hear from someone else going through this! I'm actually not sure what the test is. I've had a few doctors handling this and haven't been happy with any of them so I left that doctor shortly after getting the results and went to another "Lyme" doctor but they're hard to get a hold of and so it's kind of hard to know where I am in the healing process.

Anyway, they did a urine test, as opposed to a blood test they said. I have the results sheet here but it doesn't say anything about PCR, blot or whatever. It just says that it was done by DNA Connexions and I was tested for some bacteria and I was positive for:

B. burgdorferi Osp A - IND (IND means the bacteria is on the line for whether it would test positive or not) and also for Borrelia recurrentis - NPS (NPS means it's way over the line, like a huge amount of this bacteria).

I was told the first one is the classic Lyme bacteria that comes with the second one if you get bit by a tick in the western hemisphere. I was told the second bacteria is the TBRF bacteria. So they diagnosed me with TBRF. If I can share more info about this test, let me know, happy to share whatever.

I would guess I've had the bacteria in me for a couple years, but unlikely for like 10+. Maybe 1-4 years would be my best guess, but it's hard to say. I also grew up on the east coast in tick country in the woods but they say the second bacteria doesn't exist over there so that suggests I got bit on the west coast and I've lived here 8 years. 3 years ago I started weight lifting (with multiple personal trainers) which pretty quickly took an unnecessarily large toll on my body (in the form of muscle tightness and locking up) which is why I think maybe this started around 3-4ish years ago but I suppose it could be longer. So I have no idea how long to expect it to take to heal but 6 months on antibiotics already sounds crazy to me. I don't want to destroy my guts too.

I also do not have relapsing fevers or vomiting or anything like that. My symptoms are primarily fatigue (I was also diagnosed with chronic fatigue syndrome 15 years ago) and muscle tightness. The muscle tightness is the main problem, the one that gives me pain all throughout the day, mainly in my neck. I have several herniated discs in my neck but I see them healing on an MRI and they've been healing for 2 years so it seems like as the symptoms from the herniations improve then I try to get back into working out and being active and then my muscles just say "NO" and lock up and then I back off working out and fall into inactivity and then muscle soreness and pain comes from doing nothing all the time. It's a vicious cycle that I'm desperately trying to get out of. I'm young and feel like I'm 65 already.

Do you mind sharing your symptoms? I have been slightly suspect of the diagnosis this whole time but I don't know what else to do other than trust doctors (which I've had a lot of ups and downs with) but it is a weird diagnosis since the symptoms are so wide-ranging and the main ones don't seem to fully line up. Do my symptoms sound familiar?
Posted 5/23/2023 12:28 PM (GMT -5)
the symptoms of TBRF can be highly variable

there is a great deal of overlaps between lyme symptoms and TBRF symptoms

when the two are present together the symptom pattern may be even less predictable / more variable
for instance one bacteria might suppress the fevers expected from another.

i was concerned about gut issues / damaging mu microbiome etc with antibiotics - becuase i had been interested in functional medicine before i became ill - and so wasvery reluctant to take antibiotics
actually after months of a combination fo 3 antibiotics my gut was better if anything - not worse

lyme and co infections upset the microbiome and cause leaky gut in any case - so you have a lot less to lose than many alternative health sites would have us believe - Lyme is a serious disease that can have life threatening effects short and long term and it needs treating.
the sooner its treated the better the prognosis

there are relatively few studies on treating TBRF alone - but in general the same antibiotic as used for Lyme are used for TBRF - and with lyme in the picture anyway - it would probably be wise to focus on that as the primary infection.

lastly DNA connections is a bit of a tier 2 lab for tick born infection testing
they don't seem to have published a thorough validation report for their tests in a recognised scientific journal - as most test manufactures have.
instead they seem to go to market based on cost - (more tests for the single fee) than most test houses
and based on testimonials

i am not saying the test is no good - just that we have less information with which to base an opinion - compared to some other labs

so i think if it were me i would consider getting tested by another top tier lab like igenex to confirm the diagnosis.

treatment for lyme can be years long - so you want to be sure what yuo are dealing with before getting in too deep

all the best
Posted 5/23/2023 6:32 PM (GMT -5)
“ Do you mind sharing your symptoms? ”

Mine started with excruciating pain down the left side of my neck and around the left shoulder blade, down the left arm and hand. (My pointer finger on left hand is still somewhat numb)
Then after that more and more symptoms:
- sore bottom of feet
- sleep issues - waking up every few hours in a panic - gasping for breath.
- tailbone pain
- pulsatile tinnitus
- rapid weight loss within weeks (10+ lbs)
- I would sway back and forth when I stood
- severe short term memory issues (had trouble finding my car in the grocery store parking lot)
- I had a weird internal “buzzing”
Plus many more ….
Posted 5/26/2023 12:19 PM (GMT -5)
Thanks for everyone's replies, I really appreciate all the info!

I will look into the iGenex test instead and see if I can just get some confirmation. I feel like maybe I need to up my medicine or something because I'm only on 500mg Azythromycin daily which seems like a low dose, which was good at first but the past two or three weeks my body pain, particularly in my neck has come back pretty pronounced. I don't know if it's just an intense herxing cycle but it's stronger than usual and I don't know if it means something.

Thanks for sharing your symptoms, Girlie. The first symptom with the left side of your neck is basically exactly what my main symptom is. It started that when I began weightlifting my right glute started to hurt for some inexplicable reason and when they did an MRI they said I had congenital hip dysplasia, but then said actually it's not that severe, it's more like instability. Which has never been an issue in my life so I almost felt like they found that and misdiagnosed it. Maybe I do have mild dysplasia, but it doesn't really fully explain what I'm experiencing.

Then my neck started hurting on the left side and they did MRIs and said I have 4 cervical herniations and that was why I had the pain. But as the herniations heal my pain seems abnormally consistent. So I feel like we keep finding plausible explanations but they seem to be misdirected when in reality it might be Lyme/TBRF symptoms.

Now I get a lot of pain in my wrists and hands which I use a lot daily for work etc. and that pain has started moving into my forearms. The right side of my neck seems to have more issues lately as well.

Anyway, not sure what to do exactly but any info anyone has is great. In the meantime I need to find a doctor to consult with and potentially talk to my current doctor about maybe changing dosage or something. Hopefully this is just a normal herxing cycle but it worries me that I'm losing ground that I had gained as things had slowly improved in the previous months. Feels like I'm going backwards.
Posted 5/27/2023 5:42 AM (GMT -5)
most antibiotic treatments for lyme, and therefore TBRF, are based on multiple abx that are known to be active

azithromycin is used - but perhaps combining it with other drugs known to be active for lyme / TBRF is a direction you can explore
-doxycycline or minocycline or tetracycline
-a cephalosporin class drug
-rifampicin has activity for lyme - and therefore TBRF
-amoxillin is also used
Posted 5/29/2023 12:19 PM (GMT -5)
Thanks, yeah I think maybe I need to up my dose or change the medicine. It seemed to help for a while and now everything is getting a lot worse out of nowhere.

Does anybody know any Lyme/TBRF doctors in Colorado they could recommend? I reached out to the people I was aware of but haven't made any connections and my symptoms are worsening at an alarming rate lately (which is what prompted me to join this forum). Might be a shot in the dark but wanted to ask! Thank you!
Posted 5/29/2023 12:27 PM (GMT -5)
When trying to get input on finding lyme literate doctor its usually best top start another thread with
"please help me find a LLMD in xxxxxxx" naming your state or nearest city etc

more people will see it there - than will read this thread

Good luck
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