100 tick bites. Would you ignore it?

ChookityPop

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I have seriously had over 100 tick bites since I was born at our summer place. And the percentage of ticks with borrelia is even higher there up to 7% if I remember correctly. 2% carries borrelia on average.

If you had over 100 tick bites would you simply ignore it? What would you do or think if it was you? I have a hard time knowing what to think about it. They say I have had an infection and that it its not the culprit for my sickness. They did test me pretty heavily with lumbar puncture etc to look for lyme.

A very famous norwegian adventurer Lars Monsen got sick in 2013 with very similair symptoms as me, like issues with walking, muscles cramps/twitches and pain. They didnt find anything wrong with him and basically told him he got ME. He is one of the toughest Norwegians out there. He has lived in the wilderness for 1 year at a time many times, walked accross Canada for 1 year straight. If he says he is sick, he is for sure sick. He got well from longterm antibiotics. Like over 2 years.


There was also this police officer in Norway that won in court for the first time ever and the "health officials" admitted that having negative tests cant rule out lyme. She also got well from longterm abx. She first got diagnosed with ME. I remember she said she felt like she slowly lost contact with her legs like I do.
https://www.tv2.no/a/9859981/

So I have the same tests as these two and similar symptoms. You can have only positive igg and no igm but still have lyme. Thats a fact. To me it isnt far out to think that I could potentially have lyme.


What would you do? What would be the arguments against?

: )

EDIT: I have high titers mycoplasma pneumoniae too. Ive read about gulf war veterans with ME getting well from 1 year of doxycycline etc. But, again Idk.
 

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Alvin2

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If the treatment is a couple weeks of antibiotics see if you can find a doctor to prescribe it.
Assuming you don't have adverse reactions to antibiotics.
In my case i tested high for Helicobacter Pylori antibodies but they could not tell if i had a current infection so they gave me the two week antibiotic series. It was a headache, one every 6 hours, one every 8 hours and one every 12 hours but i got through it.
 

JES

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This. Depending on what your test results show, I'd probably request a course of antibiotics and see if I notice anything. This is actually what I did years ago, but the antibiotic had zero effect for me. Nowadays it may be more difficult to get doctors to prescribe anything for post-Lyme though.
 

ChookityPop

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This. Depending on what your test results show, I'd probably request a course of antibiotics and see if I notice anything. This is actually what I did years ago, but the antibiotic had zero effect for me. Nowadays it may be more difficult to get doctors to prescribe anything for post-Lyme though.
Sorry to hear it didnt have any effect. How long was the abx course? These two I talk about took abx for years.
 

ChookityPop

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If the treatment is a couple weeks of antibiotics see if you can find a doctor to prescribe it.
Assuming you don't have adverse reactions to antibiotics.
In my case i tested high for Helicobacter Pylori antibodies but they could not tell if i had a current infection so they gave me the two week antibiotic series. It was a headache, one every 6 hours, one every 8 hours and one every 12 hours but i got through it.
The treatment could potentially be 1-2 years or even more. These two I talk about went on for over 2 years. That sounds crazy but then again, they got their life back.

Did you benefit from it?
 

Alvin2

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The treatment could potentially be 1-2 years or even more. These two I talk about went on for over 2 years. That sounds crazy but then again, they got their life back.
Years of antibiotics is probably not safe.

Did you benefit from it?
Made no difference so apparently i didn't have an active infection. Though my case wasn't Lyme so can't really be compared.
 

Learner1

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@ChookityPop The whole Lyme thing is not full of quackery. Lyme is a very persistent illness and can destroy people's lives.

Given the scenario you presented, it seems likely that you may have been exposed to Lyme. If that is the case, finding a knowledgeable practitioner experienced in treating it would be an appropriate next step. Though there are a few here with a history of Lyme, you might find more experience and recommendations on a Lyme forum.

As for mycoplasma, I had it with chlamydia pneumoniae. Though I took both azithromycin and rifampin orally, they weren't enough, not were botanicals, UVBI, high dose vitamin C or HBOT. Eventually, I was put on 4 months of IV azithromycin, rifampin and doxycycline 3 days a week, which was successful in riffing me of them, but at a cost to microbiome health.

These are difficult infections. Getting knowledgeable expertise is essential.
 

ChookityPop

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@ChookityPop The whole Lyme thing is not full of quackery. Lyme is a very persistent illness and can destroy people's lives.

Given the scenario you presented, it seems likely that you may have been exposed to Lyme. If that is the case, finding a knowledgeable practitioner experienced in treating it would be an appropriate next step. Though there are a few here with a history of Lyme, you might find more experience and recommendations on a Lyme forum.

As for mycoplasma, I had it with chlamydia pneumoniae. Though I took both azithromycin and rifampin orally, they weren't enough, not were botanicals, UVBI, high dose vitamin C or HBOT. Eventually, I was put on 4 months of IV azithromycin, rifampin and doxycycline 3 days a week, which was successful in riffing me of them, but at a cost to microbiome health.

These are difficult infections. Getting knowledgeable expertise is essential.
I used my words poorly. Lyme is for sure not a quack illness, hence the two examples I described which are legit plus they got their life back after treatment.

How much improvement did you get from azithro and rifampin? And then after IV 3 day a week?
And how long did you treat with abx? Ive heard that its important to find the right abx to get the right response from treatment.

This is not the first time I hear people getting better from rifampin which blocks th17 immune reaction and let our body fight. Or maybe I butchered that.. I want to try the same combo actually and I have a LLMD im soon talking to.

This gives me hope!
 

Wishful

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These two I talk about went on for over 2 years. That sounds crazy but then again, they got their life back.
That doesn't necessarily mean that the antibiotics were directly--or even indirectly--responsible for the remission of the symptoms. There would have been a lot of other factors in two years. It's even possible that the body's defense against a certain infection takes two years to build up properly, and the remission would have occurred even without the antibiotics.

Maybe the antibiotics did cause the remission, but I think it would be hard to prove it. Two years of antibiotics sounds like a health hazard to me, so that treatment would be balancing one poorly-defined risk with one poorly-defined potential for improvement. Tough choice. A single negative test result for the bacteria might not be enough to rule it out 100%, but multiple tests--especially with different methods--might help decide whether the treatment is worth the risk.
 

ChookityPop

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That doesn't necessarily mean that the antibiotics were directly--or even indirectly--responsible for the remission of the symptoms. There would have been a lot of other factors in two years. It's even possible that the body's defense against a certain infection takes two years to build up properly, and the remission would have occurred even without the antibiotics.

Maybe the antibiotics did cause the remission, but I think it would be hard to prove it. Two years of antibiotics sounds like a health hazard to me, so that treatment would be balancing one poorly-defined risk with one poorly-defined potential for improvement. Tough choice. A single negative test result for the bacteria might not be enough to rule it out 100%, but multiple tests--especially with different methods--might help decide whether the treatment is worth the risk.
Thanks for your input. That is totally plausible and probably the case in many cases including myself when I first got sick. I got sick in 2014 with mild ME with fatigue and heavy brainfog, light sensitivity, blurry vison and noise sensitivity etc. But I could still walk and run (to catch a bus etc)
even though I got tired afterwards. Better put I could go to the grocery store and buy food for a week at a time and bring them home by foot. Now I cant carry more than 1-2kg and only short distances from my car. I got a lot better to the point I was working. Running and lifting weights up to 15 days of the month. Then I got super sick in 2019 again with trouble walking etc. Now moderate - severe.

The police woman had been ill for 10 years prior to treatment. Both of them say they are 100% sure that the treatment is the reason they are back. I believe both of them but I also believe one can get better again without treatment in the beginning two years of sickness as I did. Though it should be said that I took 2 weeks of Doxycycline a month after getting ill in 2014.
 
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Pyrrhus

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Although Lyme Borrelia is the most well-known tick-borne disease, it is not necessarily the most common.

We are just starting to learn about the flaviviruses and other viruses commonly transmitted by ticks.

Since these are viruses, not bacteria, antibiotics will naturally have no effect.

Just a thought to consider... Hope this helps...
 

Wishful

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I think Learner1's response was the best: get knowledgeable expertise. Some doctors probably aren't capable of dealing with difficult bacterial (or viral or parasitic ore fungal) infections, but if you do have a nasty bacterial infection, the right expert should be able to detect it and prescribe (and monitor) the correct treatment.
 

Learner1

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I used my words poorly. Lyme is for sure not a quack illness, hence the two examples I described which are legit plus they got their life back after treatment.

How much improvement did you get from azithro and rifampin? And then after IV 3 day a week?
And how long did you treat with abx? Ive heard that its important to find the right abx to get the right response from treatment.

This is not the first time I hear people getting better from rifampin which blocks th17 immune reaction and let our body fight. Or maybe I butchered that.. I want to try the same combo actually and I have a LLMD im soon talking to.

This gives me hope!
No worries. I just cringe at the use of quack. I've seen a lot of treatments that have been very beneficial with good scientific evidence bashed as quackery. I do understand the controversies of Lyme.

Please understand that I only had the chlamydia and mycoplasma on top of five viral infections which were also treated. Treating the mycoplasma and chlamydia came after treating the herpes family infections, and so the improvements I got over that period of time of treating all of it were pretty good. By the end of it, cognitive function had improved and physical function improved.

I have been treated in clinics with chronic Lyme patients, and my daughter has had Lyme. It is a tricky disease, and it's not just whichever version of the borelia the beast you have, but most people have one or more of the co-infections, which really seem to complicate things.

So, getting an accurate diagnosis of which infections you're dealing with would be really useful, as from what I understand, the treatment varies depending on which combination you have. It is also useful to get a thorough immune system work up, because of your immune system isn't working, it will be an uphill battle. My immune system was incompetent, so my doctor also got me onto IVIG which greatly helped treat the infections.

Then, you have to look at what's depleted by the infections, particularly becoming hypoxic, depletion of B vitamins, antioxidants, and lipid membranes.

I've also heard good things about dapsone. It might be worthwhile to learn about how Richard Horowitz and other top Lyme doctors treat patients. There do seem to be a lot of charlatans out there, and a lot of people have done things that are counterproductive before being able to find a path that successful, and unfortunately, some never do.
 

duncan

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What kind of tick, @ChookityPop? Ixodes Ricinus? I think I recall a 2% Norway Bb incidence study from a few years back. Where I live it's 50% these days, and I suspect it's higher than 2% in Norway now, too. But who knows? I'd get a Western Blot done if you can....And I'd check for co-infections, although metrics for those are pretty poor as well.
 
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ChookityPop

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What kind of tick, @ChookityPop? Ixodes Ricinus? I think I recall a 2% Norway Bb incidence study from a few years back. Where I live it's 50% these days, and I suspect it's higher than 2% in Norway now, too. But who knows? I'd get a Western Blot done if you can....And I'd check for co-infections, although metrics for those are pretty poor as well.
I know I have borrelia burgdorferi sensu stricto. Yes probably a lot higher. I remember walking through knee high grass at our summers place in 2014 and had 20-30 ticks walking on my legs. A lot more now.

I have positive blot test from Norway. is that the same?
 

duncan

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I hate to assume anything in this area, but maybe blot = Western Blot. You should look into it. While you're doing that, obviously you'll want to know if you're IgM or IgG positive. But more to the point (at least on some level) is what bands you test positive for.

Then you need to decide if you're just testing positive for exposure, or if you think you've an active infection.

Then you have to decide on whether to treat, and how and with what, and how long.

All the while making sure you do your best to find out about coinfections that may be involved, because today, it's alarmingly a package deal, i.e., you get one TBD, you get a couple others..

It's a crappy thing to have to manage. :(
 
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I have seriously had over 100 tick bites since I was born at our summer place
Curious where you are geographically.....

At around 16, I met ticks and have likely been bitten or exposed 100s of times myself.

So Lyme is considered to be at a lower rate...where I am due to the presence of the western fence lizard. Sceloperus occidentalis.

I had a very bad latch on, that escaped attention for some odd reason, so thats the only time I got antibiotics (a 2 week version) for what MIGHT have been a bite (no bullseye).

I don't test positive for Lyme and don't seem to have the joint issues that seem to come with it. So I suspect I escaped something, but I don't really understand how thats possible.

But I agree with whomeever said: Get to a Lyme expert before deciding to spend 2 years on antibiotics.
 

ChookityPop

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I hate to assume anything in this area, but maybe blot = Western Blot. You should look into it. While you're doing that, obviously you'll want to know if you're IgM or IgG positive. But more to the point (at least on some level) is what bands you test positive for.

Then you need to decide if 'just testing positive for exposure, or if you think you've an active infection.

Then you have to decide on whether to treat, and how and with what.

All the while making sure you do your best to find out about coinfections may be involved, because today, it's alarmingly a package deal, i.e., you get one TBD, you get a couple others..
What are bands? I never looked that up. I have positive igg not igm. I can try to find my test results.
 

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ChookityPop

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Curious where you are geographically.....

At around 16, I met ticks and have likely been bitten or exposed 100s of times myself.

So Lyme is considered to be at a lower rate...where I am due to the presence of the western fence lizard. Sceloperus occidentalis.

I had a very bad latch on, that escaped attention for some odd reason, so thats the only time I got antibiotics (a 2 week version) for what MIGHT have been a bite (no bullseye).

I don't test positive for Lyme and don't seem to have the joint issues that seem to come with it. So I suspect I escaped something, but I don't really understand how thats possible.

But I agree with whomeever said: Get to a Lyme expert before deciding to spend 2 years on antibiotics.
Im in southern Norway and where I got bit was in a heavily infested area.
There is no lizards here here at least that is super rare so I guess the ticks can enjoy themself without predators almost.

I actually never got abx from none of my bites. In our family nobody was afraid of them, just take them of and burn them. I never had bulls eye and that only happens in 20-30% I think? Def not a must. But I have had irritated skin almost like a small bulls eye many times.

Idk if the joint issues is a must neither, but dont quote me on that one. allegedgly they call lyme the big imitator or something so I guess the symptoms can range quite extensively.

Ive seen Dr Klemann in Germany which is supposed to be top 3 LLMDs in Europe and he said I had Lyme and co infections.
 

ChookityPop

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No worries. I just cringe at the use of quack. I've seen a lot of treatments that have been very beneficial with good scientific evidence bashed as quackery. I do understand the controversies of Lyme.

Please understand that I only had the chlamydia and mycoplasma on top of five viral infections which were also treated. Treating the mycoplasma and chlamydia came after treating the herpes family infections, and so the improvements I got over that period of time of treating all of it were pretty good. By the end of it, cognitive function had improved and physical function improved.

I have been treated in clinics with chronic Lyme patients, and my daughter has had Lyme. It is a tricky disease, and it's not just whichever version of the borelia the beast you have, but most people have one or more of the co-infections, which really seem to complicate things.

So, getting an accurate diagnosis of which infections you're dealing with would be really useful, as from what I understand, the treatment varies depending on which combination you have. It is also useful to get a thorough immune system work up, because of your immune system isn't working, it will be an uphill battle. My immune system was incompetent, so my doctor also got me onto IVIG which greatly helped treat the infections.

Then, you have to look at what's depleted by the infections, particularly becoming hypoxic, depletion of B vitamins, antioxidants, and lipid membranes.

I've also heard good things about dapsone. It might be worthwhile to learn about how Richard Horowitz and other top Lyme doctors treat patients. There do seem to be a lot of charlatans out there, and a lot of people have done things that are counterproductive before being able to find a path that successful, and unfortunately, some never do.
Can I ask how you treated the herpes viruses first? I thought that was an ongoing thing, like taking antivirals for herpes? Or did you start with that and after a while start treating your other issues?

Dr Klemann in Germany said I had borrelia, babesia, mycoplasma and bartonella most likely. I am contacting a very up to date polish clinic in Gdansk now.

I think my immune system test showed up okey but I havent done igg subclasses. I think I have to try to get it done privately or send it somewhere. And yes, I have to try IVIG too but thats going to be hard where I live. If not I will buy it from Ukraine.

I will look more into dapsone. Thanks!