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Posted 7/3/2023 4:10 PM (GMT 0)
Hello,

I've been suffering for several years from intense fatigue/weakness and at times have violent episodes lasting a few weeks that are accompanied by various cyclical symptoms, including neurological (huge brain fog, depersonalization, etc.).
My first major attack was triggered by a corticosteroid treatment I took for a week for severe pollen allergies in 2019.
Following this treatment, something was turned upside down in my body and I was never well again.

Given that I played a lot in the forest as a child and was bitten many times by ticks, I immediately thought of a Borrelia that might have been inactive in the body, and reactivated itself following this immunosuppressive treatment.
I carried out standard tests in France (Elisa / Western-Blot), which proved negative.

Today, 4 years later, I'm still suffering from the same symptoms and the episodes are becoming more and more violent. So I went to see a doctor who claims to specialize in Borrelias, and he gave me a standard test (serum) and a lymphocyte transformation test (LTT). Here are the result: https://i.imgur.com/inddild.jpg

As you can see, the standard tests were again negative, but the LTT tests were highly positive, with values well above the reference values. So, in the doctor's opinion, I have Lyme disease. And I'm wondering about the standard tests... Why are they negative if the others are positive?
I've also read that the LTT can be positive for Borrelias if you actually have another, more or less similar infection, or an autoimmune disease...

I don't know who to believe anymore. Is the LTT reliable enough to say that I have Lyme disease?
I'm afraid of starting treatment for the disease if it's not that, and letting another underlying disease develop in parallel...

Thank you in advance.

Post Edited (Noxon) : 8/9/2023 4:26:34 PM (GMT-8)

Posted 7/3/2023 7:16 PM (GMT 0)
Hello and welcome to the forum Noxon

sorry to hear of your struggles - but you are in good company here - many have similar stories to your own

thank you for posting your test results - they do indeed read as highly positive for multiple species of borrelia that cause lyme disease ( which lab did those tests ?)

the two types of test work by measuring different things :
the test that were positive work by measuring the activity of your white blood cells towards proteins from borrelia
the tests that were negative work by measuring the levels of antibodies your body is making to borrelia.

actually in lyme disease it is not at all uncommon for people who have been ill with lyme for years to test negative via antibody based tests.

many people here have had similar experiences
for this reason some high profile LLMD's do not even use testing for lyme - instead they rely on histories and symptoms pictures - and tests to rule out other conditions.

my own lyme tests performed by the UK NHS were negative ( C6 ELISA and Immunoblot - which are both both antibody based tests) but then specialist tests by Armin labs in Germany were positive - and i have responded positively to lyme treatment.

in general testing for lyme is extremely problematic
all tests currently available miss a significant portion of patients
many patients here get a mix of positive and negative results when they test with multiple methods
so your experience is not at all atypical
the main reason seems to be that most tests do not detect the bacteria directly - but instead measure reactions of the immune system - however all chronic infections are known to disrupt the immune system - and when disrupted it may not react in the expected ways to lyme, and therefore tests can be negative even when a person is infected and symptomatic.

in general in lyme testing, the false positive rates tend to be much lower than the false negative rates ( sensitivity is the main problem of most test types for lyme - so getting a positive result at all in persons that are infected is often a challenge ).

the LTT is thought to be less prone to false positives (cross reactivity and auto-immunity) than antibody based tests - and the fact that your test was highly positive to all strains tested - rather than just one - is much less likely to happen by chance - so would tend to decrease the chances this is a false positive

also your history of known multiple tick bites and onset after immunosuppressive steroids certainly fit with lyme.

your options are:
1, try to firm up the diagnosis with further testing and other means - the issue here is that you will likely never get a totally black or white answer - more tests could be positive - more could be negative.

all answers are typically more probabilistic in nature ( this enables you to reason some probability assessment type calculation of having lyme or not having lyme) - rather than deterministic ( simple black and white answers )
-other test labs and other tests
-other doctors and second opinions
-symptoms checklists and scores ( eg a well known one by Horowitz et al)
-all fall into this category

2, push forward with treatment as a "therapeutic trial" to see how your respond
strong reactions to treatment - then feeling somewhat better is a classic response for those with lyme - its called a herxhiemer reaction and is typified by worsening or new symptoms for a time after abx administration - typically followed by some degree of lessening of symptoms for a while

without wishing to overload you with input
because you report multiple tick bites - and because ticks are often able to transmit more than one infection
you may wish to consider testing for or treating for additional infections

some of these require different drugs than Lyme - and so it is useful to know if they are present
the more tick bites one has the more likely other co-infections are present
some LLMD's believe all chronic patients have more than one infection - often several
many people here have tested positive for multiple ( 4 or 5 infections )

in your shoes, if all the other regular things had been ruled out by my primary care doctor - i think i would be pursuing treatment.

hope this helps

feel free to ask questions
Posted 7/3/2023 11:03 PM (GMT 0)
Hi Garzie,

First of all, thank you very much for all these information.

I indeed sent a medical file to the infection department of my hospital to try to get a second opinion, but your answer comforts me in the idea that I may have found the right disease this time.
I am nevertheless afraid for the other potential infections you mention, I didn't know that ticks could transmit others than Borellia.

It was also a real fight for me during those 4 years, I've had all kinds of tests (MRI, organ scans, electroencephalograms, cardiac and neurological tests, etc.), and I've eventually been told it's psychological, that I'm anxious, but the symptoms didn't fit. That's why I find it hard to trust medicine anymore...

As you say, I think that whatever happens, the best thing would be to try medication and see what happens.
I hope it will work, I've also read that in the tertiary stage of the disease, there's a chance of never being cured unfortunately.
Posted 7/4/2023 11:30 AM (GMT 0)
the 3 most common tick born infections seem to be
-bartonella
-babesia
-lyme

there can be considerable variation from person to person - but here is a graphic that illustrates some of the typical symptoms of these three
https://learn.invisible.international/wp-content/uploads/2023/06/babesiosis-bartonellosis-and-lyme-borreliosis-symptom-reference-updated-06.07.23.pdf

there are several others that come up quite often either here in test results of other patients - or in scientific studies on lyme patients or ticks.

Tick Borne Relapsing Fever
ehrlichia
anaplasma
RMSF - or other rickettsia
Brucella
Q-Fever

be aware that when researching this topic - the older mainstream medical literature often states things like this state or "this country does not have this infection or that infection" - or "the incidence is exceedingly low", or "only affects immunocompromised individuals".
but while there are some year to year and geographic differences in prevalence of all of these, since we now know infected ticks can be carried long distances by migrating birds(including common garden birds and sea birds ) - and all have now been demonstrated to affect immunocompetent individuals - these seems to be a set of outdated assumptions.

there is a lot of symptom overlap in the symptoms patterns with many of these infections - so it can be very hard to tell which are present from symptoms alone. but having one tick born infection is evidence of risk of exposure to other tick born infections - especially if you recall multiple tick bites - so it may be worth testing to see what else might be present - and to help guide treatment - while bearing in mind that testing is currently far from perfect.

should you wish to go this route
-Igenex in the USA
-Armin Labs - in Germany
are both respected tick born disease testing labs

alternately - many LLMD's tend to design protocols that cover multiple infections.

good luck - and do keep us posted
Posted 7/6/2023 2:19 AM (GMT 0)
Hi there,

I will talk about the co-infections Grazie mentionned at my next appointement.
For the moment I wondered, does someone ever experimented such symptoms with Lyme or co-infection? I'm afraid it is hidding something else. I even wonder if I'm not mad...

- Depersonnalisation/Derealisation, weird state like if you don't exist
- Feeling of inescapable close death (this is probably the worst one)
- Reduced vision like before a vasovingal syncope
- Head pressures
- Weird pressures around/behind eyes
- Brain zaps (like electric shocks)
- Nystagmus
- Brain fog
- Feeling of lack of oxygen
- Bradychardy
- Muscle weakness
- Gastric acid reflux
- Huge dark circles
- Random burn-like pains in organs/muscles
- General discomfort at night, almost fainting...

I passed a brain RMI two years ago that showed nothing, so I don't think it is something related. But some of these symptoms don't sound really specific to Lyme.

It's really hard to live like this...
Posted 7/6/2023 6:06 AM (GMT 0)
“Depersonalization/Derealisation, weird state like if you don't exist
- Feeling of inescapable close death (this is probably the worst one)
- Reduced vision like before a vasovingal syncope
- Head pressures
- Weird pressures around/behind eyes
- Brain zaps (like electric shocks)
- Nystagmus
- Brain fog
- Feeling of lack of oxygen
- Bradychardy
- Muscle weakness
- Gastric acid reflux
- Huge dark circles
- Random burn-like pains in organs/muscles
- General discomfort at night, almost fainting...”

From your list I had the following similar symptoms:

- depersonalization - I would say to my husband - “I don’t know who I am anymore.

- head pressure
- brain zaps
- severe brain fog
- muscle weakness
- pain
And my short term memory went to sh/t.

I really thought I could die from it.

Hang in there - I got through it and you will too!

Life is good again!
Posted 7/6/2023 10:50 AM (GMT 0)
from your list

- Depersonnalisation/Derealisation, weird state like if you don't exist altered mental states - especially Depersonnalisation/Derealisation are very common - particularly with bartonella - but also lyme

- Feeling of inescapable close death (this is probably the worst one)

- Reduced vision like before a vasovingal syncope eye issues common in bartonella - including retinal nerve inflammation

- Head pressures

- Weird pressures around/behind eyes eye issues common in bartonella - including retinal nerve inflammation

- Brain zaps (like electric shocks) electric shock type sensations common in bart patients - also lyme

- Nystagmus

- Brain fog

- Feeling of lack of oxygen

- Bradychardy heart rythym issues v common in bartonella - but also lyme

- Muscle weakness

- Gastric acid reflux bartonella is the second most common cause of gastritis after H.Pyori - ref Burrascano - see the 2008 guidelines in "start here" post in top of this forum

- Huge dark circles

- Random burn-like pains in organs/muscles

- General discomfort at night, almost fainting... - bartonella is highly associated with various pain syndromes.

all of the symptoms you describe are actually very typical of Lyme disease and associated co-infections
while there is a high degree of overlap in symptoms - as you will see from the graphic i posted above - your symptom picture aligns particularly well with lyme and bartonella

when you say you don't think your symptoms line up with Lyme disease very well - may i ask where you are getting your information about Lyme disease and its symptoms ?
Posted 7/6/2023 2:39 PM (GMT 0)
Alright thank you again Garzie and Girlie for the insights.

Garzie said...
when you say you don't think your symptoms line up with Lyme disease very well - may i ask where you are getting your information about Lyme disease and its symptoms ?

Yup, I get them from this list: https://www.healingwell.com/community/default.aspx?f=30&m=1606610
And also various testimonials / websites.
Posted 7/6/2023 5:59 PM (GMT 0)

Noxon said...

Yup, I get them from this list: https://www.healingwell.com/community/default.aspx?f=30&m=1606610
And also various testimonials / websites.

that's a fairly comprehensive list - and seems to match your symptoms very well
what was it you felt did not fit ?

in any case - bear in mind that the underlying processes of inflammation, neuropathy and encephalopathy - together with energy metabolism issues, muscular-skeletal issues, autoimmunity, endocrine disturbances and gut issues - are pretty much common across all patients - but the exact symptoms driven by these processes will vary from each person to the next - so there can only ever be general patterns - not perfect matches to symptoms lists for any individual patient.
Posted 7/17/2023 8:16 PM (GMT 0)
Well! As planned, I had my appointment today with the infection department at my local hospital, for a second opinion. According to the doctor I consulted, the chances of me having Lyme are almost zero.

In her opinion, the LTT tests I made are not validated in my country (France), only the Elisa/Western Blot test is, and apparently this last one "is 99.99% reliable". It could potentially produce false positives, but is not likely to produce false negatives according to her.

On the other hand, the absence of symptoms typical of the disease would be clear proof that I don't have Lyme:
- No skin rash/redness
- No arthritis
- No facial paralysis/dysfunction
- No tingling in the extremities
- No neuropathic disorders

The symptoms I mentioned in my first message would not be symptoms specific to Lyme disease, after that I kind of suspected she'd say so...

So once again: who to believe? sad

I'm getting really fed up with this medical errancy. It's been 5 years and the doctors are telling me all sorts of things about my state of health. No two agree on a same diagnosis...

I'm still thinking of trying the Minocycline treatment, but I'm afraid that it's going to be another flash in the pan. Like all the drugs I've been fed for the last 5 years, which are useless...

Post Edited (Noxon) : 7/17/2023 12:22:55 PM (GMT-8)

Posted 7/17/2023 10:26 PM (GMT 0)
you will not get satisfaction from conventional medical doctors i am afraid

they are simply ignorant about the disease

if you read papers by reputable researchers into lyme disease, its symptoms and the efficacy of testing - on PUBMED you will find all of their statements of what rules it out etc to be entirely ignorant and false.

its shocking - but in a day of reading you will have learned more than these so called experts actually know about the disease

i had exactly the same type of thing from ID doctors in the UK

unfortunately there is no treatment that can successfully treat chronic lyme in a few weeks

treatment needs to be a well thought out long term plan - with not just abx - but lifestyle changes - diet optimisation - exercise - detoxification - sleep etc

treatment durations are often over 1 year - or even several years
but a year is a reasonable expectation if you have been ill for some time ( over 12 months )

there are lots of people here who have experience and can help so feel free to ask questions
Posted 7/18/2023 4:36 AM (GMT 0)
Don't bother taking ELISA. It throws out 92-95% cases using false case definition and 40% sensitivity.
Posted 7/18/2023 4:42 AM (GMT 0)
Of course its good being critical. Also I have similar Symptoms. I would Look into lyme while ruling Out other issued If thats possible with your insurance.
Posted 7/18/2023 4:46 AM (GMT 0)

Noxon said...
Well! As planned, I had my appointment today with the infection department at my local hospital, for a second opinion. According to the doctor I consulted, the chances of me having Lyme are almost zero.

In her opinion, the LTT tests I made are not validated in my country (France), only the Elisa/Western Blot test is, and apparently this last one "is 99.99% reliable". It could potentially produce false positives, but is not likely to produce false negatives according to her.

On the other hand, the absence of symptoms typical of the disease would be clear proof that I don't have Lyme:
- No skin rash/redness
- No arthritis
- No facial paralysis/dysfunction
- No tingling in the extremities
- No neuropathic disorders

The symptoms I mentioned in my first message would not be symptoms specific to Lyme disease, after that I kind of suspected she'd say so...

So once again: who to believe? sad

I'm getting really fed up with this medical errancy. It's been 5 years and the doctors are telling me all sorts of things about my state of health. No two agree on a same diagnosis...

I'm still thinking of trying the Minocycline treatment, but I'm afraid that it's going to be another flash in the pan. Like all the drugs I've been fed for the last 5 years, which are useless...

This statement alone makes her u qualified to treat Borreliosis, though if we follow the legal Lyme semantics game of hyperactive immune response (15% of patients) and one swollen knee, then maybe.

https://truthcures.org

^ ^ ^ Has all the answers!

To claim that the ELISA test (which was never validated by the FDA) is "99.99% reliable," is not only idiotic but criminal!

It not only doesn't "potentially produce false positives," it was designed by a criminal racketeering group using a falsified case definition to produce 95% false negatives to pass an endotoxic Pam3cys OspA 'vaccine' for
'Lyme,'

They raised the antibody cutoff standard to throwout 85% of the sickest immunocompromised patients, who will prodice very few antibodies. They found this out by looking at population groups and their genetic responses to borrelia burgdorferi. They discovered that 15% produce hyperactive immune reponse usually w/ swollen knee, while 85% do not, and prodice very few antibodies against proteins they test for. They knew this, and raised the cut off standard to THROW OUT 85% of the sickest patients to pass off their Lymerix 'vaccine.' They sill use this test and cutoff standard!

A test that throws out 85% of cases by raising cutoff standard, and is 40% sensitive is a test that throws out over 90% of cases. So the person you saw is dead wrong in every way !!!
Posted 7/18/2023 4:50 AM (GMT 0)
Most physicians don't read pubmed, or very rarely do they, and when they do, they forget and nothing changes. One spirochete can tolerize your immune system and cause anergy. They've known for 100 years that spirochetal infections cannot be eradicated only controlled, and symptoms masked. They will lie to you and tell you otherwise, and use a fraudulent test that throws out 90%+ of cases to tell you your're wrong.

Again: https://truthcures.org

Unredeemable bunch.
Posted 7/18/2023 6:30 AM (GMT 0)
Depersonnalisation/Derealisation, weird state like if you don't exist
- Feeling of inescapable close death (this is probably the worst one)
- Reduced vision like before a vasovingal syncope
- Head pressures
- Weird pressures around/behind eyes
- Brain zaps (like electric shocks)
- Nystagmus
- Brain fog
- Feeling of lack of oxygen
- Bradychardy( i have Tachykardia)
- Muscle weakness
- Gastric acid reflux
- Huge dark circles
- Random burn-like pains in organs/muscles
- General discomfort at night, almost fainting..

I want to add that i have almost every single Symptom you have + some more. And i am diagnosed by officials Not even the other labs ...

That is really crazy that your Symptoms are so similar.
Posted 7/19/2023 2:02 AM (GMT 0)
Alright, thank y'all for your answers.
I will try to treat it as if I had it then. But I'm still in doubt inside me. This situation makes me feel I can't trust anyone anymore... I hope you are right, because I don't want to stay in this ill state for the rest of my life. And of course I hope that the abx will help.

I saw that some of you are exercising here, and it seems to be recommended. But how do you manage to practice? When I make any effort, on the moment it is fine, but some minutes after, everything goes wrong in my body. I feel like I'm on the verge of fainting.

At the doctor's office, she asked me to do a series of sit-ups to test my blood pressure. My blood pressure remained intact and I was almost fine, but even so, when I left the appointment 10 minutes later, I had to lie down in the car. I felt very dizzy and I had big pressures in the head, I couldn't even answer my father's questions. I felt really bad.
Posted 7/19/2023 5:54 AM (GMT 0)
Its very simple. Many people Here worked there self Up through months and years of Treatment to be able to Work Out again.

For me as example i cant do anything. Taking a shower and going for a small Walk in the Yard is my Maximum workout.

You are in the Beginning. Hang in there, it will get better months after months.

I have doubt too because as a Bachelor i am so used to the Classic Mainstream medicine and i Had so much Trust in it. And yet they failed me. So Here i am. This is my only Chance left.

Best wishes
Posted 7/29/2023 4:25 PM (GMT 0)
hi Noxon
i wrote a post a while ago about how to start exercising with lyme etc - i will post it below
the key is starting out below what you can manage - and gradually working up to find your limit:

the stronger your body is the healthier your immune system will be

Exercising safely with Lyme

obviously exercising with Lyme is not a straightforward proposition
many will feel they cannot possibly exercise at all - and overdoing it is all too easy, and can actually set you back with more fatigue and adverse symptoms.

i didn’t think exercise beyond maybe walking was a possibility for me despite exercising most of my life - due to feeling so ill with Lyme.

however, i have been surprised to find that even when feeling pretty weak and awful - i can not only start to exercise (if done carefully) but actually gain strength and physical capability - despite how uncomfortable exercise feels now - vs before i got Lyme.

not only does this give me all the benefits that exercise normally gives people:
better mood, sleep, overall health, self-esteem etc
but it has actually increased what i can get done in a day - vs before i started
in other words, it has helped me move my recovery forward in measurable ways

i thought i would post a few words i put together on how to exercise with lyme (as someone who experienced chronic fatigue, PEM etc)
much of it is in line with Dr Burrascano's guideline
but adds a bit more specific guidance.

========

Dr Burrascano talks about this in his 2008 guidelines for Lyme treatment - see the sticky post at the top of the forum page - i think it’s in there somewhere - it’s well worth a read

basically, we each have an ideal window to exercise in - whether sick or elite athletes

the bottom of the window is defined by the minimum amount we need to do to send a signal to our system to repair itself stronger in preparation for the next challenge
the upper end of the window is defined by the level beyond which we do more harm than good

the issue is that with lyme, especially in the beginning the lower end of the window is very close to the top end of the window- and such there is a very narrow margin between doing enough and doing too much.

also aerobic activities (activities like jogging or HIT) seem to trigger much worse responses than anaerobic ones like resistance training. Dr Burrascano highlights this also - and it has been my experience too.

he also says it’s the strength exercises that are the most important for the immune system and essential to get better from lyme - so it’s good that you are looking into it.

as an example, I can walk 3-4 miles at a fast clip and be fine the next day - but if i try to run for even 100yards i will have ill feelings and extra fatigue the next day. yet I can do resistance exercises - like press-ups and dumbbells as long as i am careful. i had to build up very gradually at first though.

my advice:
-keep up the walking - its a great basic form of exercise and doesn't seem to trigger PEM unless you overdo it

-add in gradually some form of resistance training (strength training)
- so, weights, isometric etc - whatever works for you

-work out where your tolerance is - deliberately do too little to begin with and work up to find your limit - then back off a little.

-be systematic - keep records and have a target for each workout - make only v small increments each workout to avoid PEM reactions

-you will likely need longer recovery periods to begin with - so - esp if you have issues with PEM maybe only exercise 1x per 5-7 days

-later aim to gradually bring this down to 2-3 days in-between - and eventually every other day

-it will be slow at first - do not be discouraged - momentum will build

- focus on recovery as much as the actual exercise part

---diet (your body needs good nutrition when fighting this thing and exercising) to recover well

---sleep - this when your body rebuilds itself best - the better you sleep, the better you will recover from exercise and the faster you will progress

-----------

i am following the above plan and am now able to work out 45mins every 3rd day and am getting stronger almost every workout (something that hasn't really happened consistently since my mid 20's) - despite also treating lyme with antimicrobials at the same time.

i'm not saying exercise will feel good - it will not to begin with - but stick at it - be systematic - increment slowly - and you will be surprised how much you can do.

good luck!!
Posted 7/30/2023 4:44 AM (GMT 0)
I may have a LLMD listed in France…. Or Belgium if you’re able to travel
If you email me I can give you the information.
Posted 7/31/2023 2:16 PM (GMT 0)
Hi,

I’ve come to give some news. Several things happened again since I posted my last answer.

As it turned out, my girlfriend knew the head of the analysis laboratory at the local hospital.
I chatted to her over an aperitif, and she took my case seriously because one of her friends has Lyme. As it happens, he has all the typical symptoms and responds positively to conventional tests (Elisa/WesternBlot).
I sent her my lymphocyte transformation tests (LTT, which are not recognized in France). She contacted the research center, which said the strangest thing: that Lyme disease is exclusive to Burgdorferi, and that in this case, my LTTs don't prove anything. Reactions may also be due to the fact that, as a child, you're exposed to lots of bacteria of this kind for a long time, and your antibodies can react.

However, on the internet, we read everywhere that the syndrome is more commonly triggered by Afzelii in Europe.
So that alone is a contradiction in terms... So again and again... Who to believe...

For the past 4 days, I've been in a terrible state.
I'm completely depersonalized/derealized, to the point where I don't even feel like living anymore. I feel absolutely nothing, I'm losing the very concept of life.
I'll be honest at this point, it's intolerable. I fall asleep to escape this reality, I wake up only to suffer. I've reached a point where the hope of recovery is dwindling and giving way to the hope of dying to end this condition.
My brain is completely gone. I've seen that Lyme can eventually cause psychiatric symptoms similar to severe depression or dementia, so I think if I have Lyme, I'm at that stage.

I started my antibiotic treatment this morning. I've got nothing left to lose.
But deep down, I have no hope of remission anymore.

Post Edited (Noxon) : 7/31/2023 6:19:04 AM (GMT-8)

Posted 7/31/2023 2:29 PM (GMT 0)

Noxon said...
She contacted the research center, which said the strangest thing: that Lyme disease is exclusive to Burgdorferi

Hi Noxon,

The above statement made by the research center is not accurate at all.

Lyme disease is not just the Burgdorferi strain, that's just the most commonly "spoken" of strain, but it's not the only one.

B. burgdorferi, B. afzelii, B. garinii and several more are all called Lyme disease.

There are many things being debated in Lyme disease, but the terminology itself is actually not something that's even being debated. That's simply not an accurate statement.

From Harvard University: https://web.archive.org/web/20160821071927/http://portal.mah.harvard.edu/templatesnew/departments/mta/lyme/uploaded_documents/nejmcp1314325.pdf

"Lyme disease, a zoonosis, is transmitted by certain ixodid ticks and is the most
common reportable vectorborne disease in the United States, where it is caused only
by the spirochete Borrelia burgdorferi sensu stricto (hereafter termed B. burgdorferi).1-3
In Europe and in Asia, B. afzelii, B. garinii, and other related species, in addition to
B. burgdorferi, cause Lyme disease.2"

As Garzie pointed out above, I would get a lab test by a reputable laboratory. Like the immunoblot by IGeneX.

Take care!!

All the best.
Posted 7/31/2023 4:49 PM (GMT 0)
yep - many Borrelia species cause Lyme disease - i think around 17 total now - but the 3 main ones Rainy listed are the most common in Europe - this is very well established science in dozens and dozens of peer reviewed papers in the most respected journals.

unfortunately there are man so called experts who confidently state all sorts of things that are simply untrue. they often believe them themselves - but are typically just ignorant of the actual facts - often just repeating something they have one been told.

if in doubt ask the people making statements for a reference for what they state.

that said - absolute black and white answers are usually simply not possible with this disease and a person can cause themselves huge amount of stress looking for this type of absolute certainty.
this makes it different to a lot of conventional infectious diseases - where there is a test that is better than 99% accurate - and so you can treat it as a black and white answer.
so a different apprach is needed

with lyme its much more effective and appropriate to think in terms of probability and build a picture from several different sources to reason what the chances you have lyme are
- rather than an all-or-nothing approach
do i definitely have lyme or do i definitely not have lyme - and i can't decide so i cant move forward

testing is one such source of information - but its far from perfect
history and lifestyle are a key piece
symptoms are another
how you react to treatment is another

you will not get satisfactory answers or treatment from conventional doctors i am afraid
looking for such there will just lead to frustration - they have been mis-educated about lyme disease

treatment is entirely possible though
there are lots of resources

websites like Dr MR's Treat lyme - has useful information, videos and protocols
books like Horowitz - How can i get better
ILADS Guidelines - by Burascanno etc

these are all free resources provided by full board Certified Medical Doctors who do understand and treat chronic Lyme and co infections

i know its overwhelming at first - but people can and do get better - even after decades of suffering

you can too!

learning about the disease is the first step
if you can access a LLMD - that will likely shorten the process considerably - and take the load of you also - but they do tend to be expensive - so not all of us can afford or access one where we live.
Posted 8/10/2023 12:19 AM (GMT 0)
I'm here to give some news.

I finally started my treatment 10 days ago, following my last post.
This is what I take currently:
  • Minocycline (ABX): 200mg/day
  • MetaClear: Detox/Support for liver function
  • MetaRelax: Glycerophosphate-based dietary supplement
  • Vitamins B/C/Mg/Zn


My condition has really worsened since I started ABX...

The practice in which I'm being treated is made up of three doctors, the main one being the oldest.
They don't call themselves LLMDs, but they are well known in the border region for detecting and treating Lyme disease and co-infections.
They have patients from Luxembourg, Germany, France, and Belgium.

When I first went there, I bumped into a young doctor he had trained, she is the one that made me undergo the LTT. She told me to contact her again 10 days after the start of my treatment.
As she was away this month, this time I was greeted by the older doctor.
He consulted my analyses, and told me that in his entire career, I'm the first patient he's seen to have had such high stimulation indices on LTT.
Patients usually hover around 4 or 5 and are confirmed positive. Personally, I'm at 16 on certain borellioses...
He told me "it's total war in your body".

I worry a lot because, at times, I have strange pseudo-illnesses, a sort of disconnection, black spots in front of my eyes, as if my brain were going to stop.
I have constant headaches, strong pressures, sometimes even nausea. I have to take NSAIDs every day...
Still a big brain frog, difficulty expressing myself verbally, accouphenes, slight depersonalization.
Three days ago, I managed to feel faint while stretching (stretch syncop ?), I saw everything black for a few seconds, I couldn't hear anything, I felt myself leaving, it was terrifying.

I was afraid of developing intracranial hypertension, because this syndrome is a serious side effect of Minocycline, and I'm supposed to stop the treatment immediately if it happens.
But the doctor tells me it's okay...
But in my feeling, it seems abnormal. Especially since my neurological symptoms have been going on for a while now and aren't really typical of Lyme or any notable co-infections.

I still have to have an X-ray of my spine on Monday to see if there's anything there.
I'm a bit afraid that my Lyme disease is also hiding another pathology, and that we'll blame it all on the borellias.

I'm sorry to tell you about my life, but maybe it helps me a little inside to cope with this state.
Posted 8/10/2023 5:43 AM (GMT 0)
I am worrying a Lot too, because my Symptoms are 99% Heart related and that makes me Freak Out aswell. High Heart rate, intense chest pain, Low HRV, you Name it..

I also have the concern that my doctors miss something aside lymes, but as far as i can Tell we did every Test. Heart Mri, Heart Echo, MRI of Body, blood Tests, etc and it all comes Back negative... I think lyme has to be the smallest Common denominator....

As far as I can tell scholar medicine has us brainwashed very badly.
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