Martin aka paused||M.E.
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That describes the situation I'm in.... Even if I don't remember any tivk bite
I may have Lyme, need advice!
- Thread starter Wanja
- Start date
I think Lyme is kind of an umbrella diagnosis .and the bacterias are only a trigger on an already damaged and weak immune system just like the trigger mold,toxins,medications,pesticides ,trauma etc etc .They all cause the same range of symptoms.and they all reactivate and multiply viruses like EBV,Herpes .but that's just my thought.Also why don t all the animals in the forest don t get sick from Lyme ?
uglevod
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Lyme is one of those pathogens(other includes EBV CMV) suppressing VDR(vitamin D receptor):
https://mpkb.org/home/pathogenesis/vitamind/metabolism
Another one is Mycobacteria and 15..30% of the world population is already chronically infected with it (latent intracellular undiagnosed form).
Wanja
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i remember that i had a tick bite years ago, several times at least.... i had a strange rash when i was in bolivia but i dont know.
Martin aka paused||M.E.
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Several times? Ok then I would not give up this theory.
5vforest
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If you remember several bites and a rash, it is probably worth trying some sort of treatment. For a case like that, it is my opinion that you are not likely to find any other treatment with as good a chance of success 
Wanja
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If you remember several bites and a rash, it is probably worth trying some sort of treatment. For a case like that, it is my opinion that you are not likely to find any other treatment with as good a chance of success
So what is the treatment? Antibiotics?
Martin aka paused||M.E.
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Azlocillin, perhaps Disulfiram.
But search for an Borreliose expert or go to a Tropeninstitut of U clinic
Aidan Walsh
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Hey friends!
so my autoimmune-encephalitis panel came back negative.
I am going to get checked for Lyme next week as the symptomps of heavy chronic neuro lyme pretty much describes my situation.
https://forums.phoenixrising.me/threads/i-dont-think-i-have-cfs-anymore.84255/
i find this whole chronic infection thing rather confusing and i am not really sure what are the tests to take and treatments recommended and if they are reliable.
I would like to try some naturals first and then meds to treat my possible chronic lyme infection.
can you recommend supplements, meds, treatments, protocols which are know to help, things to keep in mind and the most effective tests?
Many of you are much more experienced than me and i dont have the power for that much research lately...
I would get checked for any types of 'Porphyria' especially the 3 of 4 Acute Hepatic types AIP VP PC forget about ADP type it is so rare about 10 people to have this worldwide
5vforest
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Martin is correct; this is really complicated and ideally you can find an expert who can help guide your treatment. Unfortunately as we've discussed there are many people who pass themselves off as "experts" but in fact use dangerous, speculative treatment methods.
Disulfiram seems like a good option. Ceftriaxone is the most standard IV antibiotic for late-stage Lyme, so that might be worth a shot too.
I think some of the herbal protocols can be effective as well if you are reluctant to try abx.
Honestly if you have never tried antibiotics, there might be a lot to learn from how you respond to them.
frozenborderline
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I did a pretty in depth episode that covered the origins of lyme, and the controversy of it and idea of persistence, along with stuff about the lake Tahoe cfs outbreak, and viral infections combined with environmental immune suppressants. You may or may not like it but it's got lots of information on lyme and audio narrative format that could be easier for some people
Listen to Lyme Wars ft. @AllegedlyZo by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/U3Ywu
Listen to Lyme Wars ft. @AllegedlyZo by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/U3Ywu
@Wanja, How was your experience with DEDIMED? I'm an American living in Berlin looking for Lyme testing, and I couldn't find much else by way of English-speaking labs around here.
I just visited Cape Cod, got bitten by ticks, tested negative for Lyme once and positive once, started antibiotic treatment, and want to test afterwards to make sure they worked. (Or whether the positive result, just days after the bite, was potentially a false positive.) DEDIMED is willing to test me but they seem trigger-happy with diagnosis, not to mention expensive (120 EUR *not* including tests, private pay only). I've wasted a lot of money on useless treatments for mysterious illness (I'm in the fibromyalgia realm) and I'd rather my remaining assets not go the way of Martin's car!
i have been studying Lyme and other tick born infections in depth for a number of years - the topic is complex and only some of the answers exist at this point in time - however there is a good deal we do know - but there is also a huge issue with misinformation and out of date information.
making sense of thsi is a mine field to the newly initiated / diagnosed
i can tell you:
1, serological tests are highly insensitive in the first 4-6 weeks after tick bite. this results in many false negatives as the body need around 4 weeks to start to make the antibodies the test looks for. for this reason most authoritative sources advocate for treatment based on clinical signs rather than based on testing.
2, there is, so far no test, that can tell you you are no longer infected. people are working on this type of test but so far nothing concrete has emerged. be aware that it is common for people with confirmed lyme disease to test and have a series of different results on western blot tests - sometimes these bands - sometimes some other bands - sometimes only IgG bands - sometimes only IgM - sometimes no bands. the borelia burgdorferi s.l. spirochete is known ( multiple papers on this) to repeatedly change the outer surface proteins expressed in its outer membrane - this are the proteins that the human immune system recognises and makes antibodies to - so the types and amounts of antibodies inside the host vary over time in response to these changes.
3, all serologic testing is flawed and unreliable - even after 6 weeks - many, many studies find sensitivity of anywhere between 20 to 70% at best ( manufacturers all claim much higher - but independent studies repeatedly find a big difference between the manuf claims and reality)
4, alternate test technologies are of as yet limited value - eg -
*PCR - so few spirochetes are in the blood at any one time that PCR of blood has proven to be only around *50% sensitive ( misses half of true cases)
*LTT - may be better than serology - but also flawed - / sensitivity issues - especially if immune function compromised or CD57+ counts low
*CD57+ tests - often low in Lyme - but sometimes actually high in lyme - and can be low in other diseases
*various nanotrap antigen / metabolite tests - so far none have proven universally effective
*phage based testing - finds much higher positive rate than any other method so far - interpretation difficult
regarding the lack of or slow / partial response to treatment as evidence for chronic Lyme being a non existent disease - a short study of the immune evasion techniques the spirochete is armed with gives ample explanation for the poor or incomplete response to conventional antibiotic treatment
-intracellular infection - organism can reside inside cells - a protected environment vs outside / between cells - much lower abx concentrations exist inside cells -
-biofilm formation - the Lyme spirochete lives mostly in micro biofilm colonies sequestered inside tissues - biofilms forms are up to 1500x more tolerant of abx vs free swimming forms
- host immune disruption - borrelia quickly colonise and damage germinal centres of the immune system, they also dysregulate the immune system, making it harder for the host immune system to function properly to eradicate it.
-antigenic variation - as described above - the organism is able to change the proteins it expresses in its outer surface to fool the immune system - hence its able to go about its business unhindered - until the immune system tries to catch up - by which time its changed its outer surface again
-co-infection - many studies show a high degree of co-infection exists in human lyme patients - in particular bartonella, babesia - but also anaplasma, erhlichia, rocky mountain spotted fever or other Rickettsia's, relapsing fever and many others - all of which may be transmitted by the same tick or picked up by the now immune-compromised patient elsewhere. co-infection typically causes a more severe symptom picture and more difficult treatment path.
people who have been sick for years with lyme often take years of systematic consistent treatment ( 1-2 years is perhaps typical) to fully recover but it is possible.
i struggled with diagnosis for 6 years - and was given diagnosis of post viral fatigue, fibromyalgia, CFS etc before finding lyme and bartonella - and am now 60% recovered - can workout 3-4 times per week and go hill walking, and i'm improving gradually month by month. in my case treating bartonella was key to moving forward.
i'm not suggesting everyone with a CFS diagnosis has lyme - but given the way the medical profession steer away form chronic Lyme, due to the controversy around it - and label people with just about any other diagnosis they cannot be pulled up in front of a board for - its safe to say that a fair number of them are.
in surveys of patients in the UK by Lyme advocacy groups - the majority of patients later diagnosed with Lyme - were first given a CFS diagnosis by UK GP's - i wonder how many stop there and just accept it. if i had my life would have been just about over.
for those interested in lyme support, info on diagnostics and treatments - i can recommend a knowledgeable and helpful group here https://www.healingwell.com/community/default.aspx?f=30
from studies i have read
*around than 50% of Lyme patients do not remember a tick bite
*around 50% of cases describe a rapid onset of illness after a "summer flu" or similar acute febrile illness of some sore
*the other 50% report a gradual descent into illness with many symptoms accumulating over time
bartonella on its own can present with a huge array of lyme like symptoms, pain, fatigue, mood issues, POTS, PEM, autonomic nervous system dysfunction, musculoskeletal issues, circulation disorders, digestive issues, arrhythmias etc etc
the test for it are even worse than those for Lyme - typical serology is less than 20% sensitive
the UK NHS has actually recently withdrawn its serological bartonella test for this reason
the medical text books are haplessly out of date and all still describe it as a "self resolving febrile illness"
and that's likely all your GP knows about it ....
but this is absolutely not the case for many many people
individual reactions are dependent on 2 things
1, the species or strain you are infected with
2, the variable host response phenomenon ( each person can have a completely different symptoms profile from the next)
in general most of the manifestations are a product of something called small vessel disease - where the organism infects and causes inflammation in small blood vessels in the body - and that results in a non acute disease typically presenting as moderate reduction of function, reduction in organ function, reduction in blood flow to regions of the brain etc etc.
domestic cats that are allowed to go outside carry infection rates of up to 50% or more in many countries - including in the developed world - as its is present at high prevalence in their prey animals eg voles, mice etc. Cat fleas are an important vector and can transmit it to humans very easily. other biting arthropods / flies are also valid vectors. cat bites or scratches are another well known mode of transmission.
this is about the best primer on bartonella out there
its by the worlds most respected researcher in the field of bartonella - and the best known clinician who treat bartonella in the USA.
(They are not internet quacks- they have 40 years dedicated to the subject and stick to the facts )
https://youtu.be/NJYwMMPJIkU
not everyone with bartonella gets it - but if you do this rash is better than a positive blood test - as nothing else is known to cause these very characteristic purple streaks in the skin - or "striae" as they are known
https://tinyurl.com/2g23heag
common positions are
-lower back ( esp in males)
-flanks,
-join of armpit/shoulder chest,
-belly
-thighs ( esp females )
they are not stretch marks - but a separate skin manifestation - typically red / purple and zig-zagging pattern
its a disease that flies under the radar - and having suffered with it for several years - lost my job, my fiancé, my house etc - i wanted to raise awareness
i hope this mini primer on Bartonella is of some help to someone here
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HI @Martin aka paused||M.E. How are you doing? I don't follow your site but do think of you and wonder how life is treating you? Also, what is your site address?
You've taken so much action and I admire your tenacity. At one time, I was like you and yes, it helped get us to the point of having some treatments. We truly were pariahs, no question of it....but not so much today. Going worldwide helped that immensely, but there is still so much to do, so much. Everyone from patients, to researchers to doctors need to join in what is happening. Better health to you (and I hope you find it soon).
For all affected: Reading, even early books is helpful in understanding exactly what has transpired over the years, the attitude of the NIH in the U.S., the "solution" in the UK, etc. I have many books on this illness so know they're out there and some aren't too complicated. Some researchers and doctors have put their careers on the line (thank-you to people like Ron Davis, father of Whitney). Yours, Lenora
You've taken so much action and I admire your tenacity. At one time, I was like you and yes, it helped get us to the point of having some treatments. We truly were pariahs, no question of it....but not so much today. Going worldwide helped that immensely, but there is still so much to do, so much. Everyone from patients, to researchers to doctors need to join in what is happening. Better health to you (and I hope you find it soon).
For all affected: Reading, even early books is helpful in understanding exactly what has transpired over the years, the attitude of the NIH in the U.S., the "solution" in the UK, etc. I have many books on this illness so know they're out there and some aren't too complicated. Some researchers and doctors have put their careers on the line (thank-you to people like Ron Davis, father of Whitney). Yours, Lenora