SWAlexander
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Not finished searching yet. I think it is more like a mast-cell problem.
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Question about Petechien
- Thread starter SWAlexander
- Start date
And here's another possibility , calcinosis cutis, deposits of calcium phosphate crystals in the skin ;
Two cases of vaccine induced calcinosis cutis ;
https://www.sciencedirect.com/science/article/pii/S0929664614000990?via=ihub
"Calcinosis cutis results from deposits of calcium and phosphorus in the skin. We report here for the first time two cases of calcinosis cutis following the local injection of influenza vaccine."
There are many causes and treatments ;
https://dermnetnz.org/topics/calcinosis-cutis
The images are usually of extreme cases ;
https://www.dermis.net/dermisroot/en/37886/diagnose.htm
Here's an image in the case of a child , it's less extreme ;
https://www.journalagent.com/tjh/pdfs/TJH_22_3_151_154.pdf
Two cases of vaccine induced calcinosis cutis ;
https://www.sciencedirect.com/science/article/pii/S0929664614000990?via=ihub
"Calcinosis cutis results from deposits of calcium and phosphorus in the skin. We report here for the first time two cases of calcinosis cutis following the local injection of influenza vaccine."
There are many causes and treatments ;
https://dermnetnz.org/topics/calcinosis-cutis
The images are usually of extreme cases ;
https://www.dermis.net/dermisroot/en/37886/diagnose.htm
Here's an image in the case of a child , it's less extreme ;
https://www.journalagent.com/tjh/pdfs/TJH_22_3_151_154.pdf
SWAlexander
Senior Member
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- 1,670
Thank you Crux. I will read the links with very much attention and compare them to my situation. I will report back.
SWAlexander
Senior Member
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Nothing I read in the links fits my symptoms. Back in 1972 I had a one-time flu vaccine and became very ill for 6 weeks.
My skin became suddenly very dry and thin like parchment paper, old-looking the time the red spots appeared. Further observation revealed that the crystals are sitting on top of nerve cells. As soon as I remove one crystal there is a little electric reaction to other nerves.
My skin became suddenly very dry and thin like parchment paper, old-looking the time the red spots appeared. Further observation revealed that the crystals are sitting on top of nerve cells. As soon as I remove one crystal there is a little electric reaction to other nerves.
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Hi @SWAlexander.......You've certainly had a lot of reading to do about this, thanks to people like @Crux, for example, and it's a very unusual outcome from your vaccine.
Separate from the crystals: Have you ever been checked for Ehler-Danlos Syndrome? The thin skin makes me wonder....perhaps check it out and see if you feel you have any other symptoms.
To the best of my knowledge, nothing can be done but at least you'd have an explanation.
I've never known anyone who has had the "crystal" problem before. I know what you mean about the feeling of electricity....but to actually remove one and feel it must be quite unique. I've had pain that's like electricity shooting through the body and that was certainly different also.
Some doctor somewhere (and researchers, I'm sure) would love to actually see this and try to help you as best they can. The human body and how it can "shed" things is really quite remarkable and fascinating. It's just that we don't want to be Exhibit 'A' do we? Yours, Lenora
Separate from the crystals: Have you ever been checked for Ehler-Danlos Syndrome? The thin skin makes me wonder....perhaps check it out and see if you feel you have any other symptoms.
To the best of my knowledge, nothing can be done but at least you'd have an explanation.
I've never known anyone who has had the "crystal" problem before. I know what you mean about the feeling of electricity....but to actually remove one and feel it must be quite unique. I've had pain that's like electricity shooting through the body and that was certainly different also.
Some doctor somewhere (and researchers, I'm sure) would love to actually see this and try to help you as best they can. The human body and how it can "shed" things is really quite remarkable and fascinating. It's just that we don't want to be Exhibit 'A' do we? Yours, Lenora
SWAlexander
Senior Member
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Lenora, thanks. Yes, I have asked, back in 2021, my oncologist and rheumatologist to test EDS, since I have a genetic mutation in diff. genes especially chromosome 9 (COL5A1, LOC101448202). Neither one of the doctors deemed a test necessary, because I don´t have joint dislocations, and my spine curvature "is not too bad" they said.
I realized quickly that my question about EDS busted their willingness or even their knowledge about it.
As you may know, it is a lifelong struggle to find qualified doctors while suffering meanwhile.
SWAlexander
Senior Member
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Today in a phone call to my hematologist I learned there is a male replacement.
So, I asked him if he would support a spherocytosis blood test or if his lab would look at the crystals.
No, he said, that is not necessary and too expensive.
Unbelievable. This is the reason I agree with GinaMcGalliard
So, I asked him if he would support a spherocytosis blood test or if his lab would look at the crystals.
No, he said, that is not necessary and too expensive.
Unbelievable. This is the reason I agree with GinaMcGalliard
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Hi @SWAlexander....A surgeon (a very good one) I once used years ago, absolutely would not touch patients until the symptoms of the patient match what he saw on the tests. Smart man and as I've grown older, I believe he's totally right. He did operate on me but not until 5 years later. The only thing gained was no more neck pain, and slowing down of all other symptoms. So I do take a thoughtful doctor seriously...they're around but hard to find.
Many tests are too expensive to run and unless other symptoms occur they aren't allowed by insurance. . It doesn't seem right, but as long as your doctor knows, you're aware of the cause and other matters, (such as is it getting better?) then not much is gained and some of these tests are super expensive. Once that was explained to me, I understood the problem. That's what seems to be missing...an easily understandable explanation that a nurse or even someone in the office filing insurance could explain.
As far as your EDS goes, you will have to go to a Scoliosis specialist (and yes, they do exist). I have what I have (I'm now old) and I wouldn't want them fixing anything at this point. When I was recently in the hospital I was given a brace for my scoliosis and broken pelvis....ah, no one could possibly wear this thing and my insurance has already been billed. I thought the old braces were bad, but they have nothing on this "less intrusive" model.
Fortunately my curves aren't very obvious, but I suspect that will change with the forthcoming years. We'll see,
I hope your leg will improve over the new few months...and things will return to a relative normal for you. I truly do. Yours, Lenora.
Many tests are too expensive to run and unless other symptoms occur they aren't allowed by insurance. . It doesn't seem right, but as long as your doctor knows, you're aware of the cause and other matters, (such as is it getting better?) then not much is gained and some of these tests are super expensive. Once that was explained to me, I understood the problem. That's what seems to be missing...an easily understandable explanation that a nurse or even someone in the office filing insurance could explain.
As far as your EDS goes, you will have to go to a Scoliosis specialist (and yes, they do exist). I have what I have (I'm now old) and I wouldn't want them fixing anything at this point. When I was recently in the hospital I was given a brace for my scoliosis and broken pelvis....ah, no one could possibly wear this thing and my insurance has already been billed. I thought the old braces were bad, but they have nothing on this "less intrusive" model.
Fortunately my curves aren't very obvious, but I suspect that will change with the forthcoming years. We'll see,
I hope your leg will improve over the new few months...and things will return to a relative normal for you. I truly do. Yours, Lenora.
Last edited by a moderator:
SWAlexander
Senior Member
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Selective inhibition of miRNA processing by a herpesvirus-encoded miRNA
Abstract
Herpesviruses have mastered host cell modulation and immune evasion to augment productive infection, life-long latency and reactivation1,2. A long appreciated, yet undefined relationship exists between the lytic–latent switch and viral non-coding RNAs3,4. Here we identify viral microRNA (miRNA)-mediated inhibition of host miRNA processing as a cellular mechanism that human herpesvirus 6A (HHV-6A) exploits to disrupt mitochondrial architecture, evade intrinsic host defences and drive the switch from latent to lytic virus infection. We demonstrate that virus-encoded miR-aU14 selectively inhibits the processing of multiple miR-30 family members by direct interaction with the respective primary (pri)-miRNA hairpin loops. Subsequent loss of miR-30 and activation of the miR-30–p53–DRP1 axis triggers a profound disruption of mitochondrial architecture. This impairs induction of type I interferons and is necessary for both productive infection and virus reactivation. Ectopic expression of miR-aU14 triggered virus reactivation from latency, identifying viral miR-aU14 as a readily druggable master regulator of the herpesvirus lytic–latent switch. Our results show that miRNA-mediated inhibition of miRNA processing represents a generalized cellular mechanism that can be exploited to selectively target individual members of miRNA families. We anticipate that targeting miR-aU14 will provide new therapeutic options for preventing herpesvirus reactivations in HHV-6-associated disorders.
https://www.nature.com/articles/s41586-022-04667-4#disqus_thread
Abstract
Herpesviruses have mastered host cell modulation and immune evasion to augment productive infection, life-long latency and reactivation1,2. A long appreciated, yet undefined relationship exists between the lytic–latent switch and viral non-coding RNAs3,4. Here we identify viral microRNA (miRNA)-mediated inhibition of host miRNA processing as a cellular mechanism that human herpesvirus 6A (HHV-6A) exploits to disrupt mitochondrial architecture, evade intrinsic host defences and drive the switch from latent to lytic virus infection. We demonstrate that virus-encoded miR-aU14 selectively inhibits the processing of multiple miR-30 family members by direct interaction with the respective primary (pri)-miRNA hairpin loops. Subsequent loss of miR-30 and activation of the miR-30–p53–DRP1 axis triggers a profound disruption of mitochondrial architecture. This impairs induction of type I interferons and is necessary for both productive infection and virus reactivation. Ectopic expression of miR-aU14 triggered virus reactivation from latency, identifying viral miR-aU14 as a readily druggable master regulator of the herpesvirus lytic–latent switch. Our results show that miRNA-mediated inhibition of miRNA processing represents a generalized cellular mechanism that can be exploited to selectively target individual members of miRNA families. We anticipate that targeting miR-aU14 will provide new therapeutic options for preventing herpesvirus reactivations in HHV-6-associated disorders.
https://www.nature.com/articles/s41586-022-04667-4#disqus_thread
SWAlexander
Senior Member
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- 1,670
Your post was very revealing and helpful. Thanks.
All these questions the hematologist could not answer.
I sent the crystals to a lab. No results.
These crystals may be the result of getting Heparin shots at the time.
i have a very similar skin symptoms - tiny red spots that produce hard little cores inside them as they heal
i have also been diagnosed with CFS - but have recently found that i actually have a chronic bacterial infection that is driving my symptoms - which are very similar to yours.
i have spoken with several other people with this infection and they report the same tiny red spots or blisters in the skin that have hard cores of material like in your photos inside them.
the infection is called Bartonellosis - after the bacteria that causes it - various species of the genus Bartonella
it is mainly zoonotic - being spread from animals to humans from the bite of biting insects or other arthropods - like biting flies, fleas and ticks.
Pet owners ( cats and dogs in particular carry it) , those with outdoor lifestyles, farmers and vets are at increased risk.
it causes a host of different symptoms -and they tend to be different in each individual infected person - but they are mostly caused by its ability to infect and cause inflammation in the blood vessels ( vasculitis ) in particular small vessel disease - which effect blood flow in all tissues and organs - leading to an array of symptoms.
the type of symptoms you mention are pretty much stereotypical of Bartonellosis - in particular
-fatigue
-weakness
-POTS
-allergies and food sensitivities/ chemical sensitivities
-vision problems
-skin rashes of many varying types ( a particular type with stretch mark like streaks is highly diagnostic but typically only occurs in a fraction of patients )
-mood issues like anxiety, depression and even rage are v common - esp in younger people
-blood clotting issues are also very common - as the organism causes inflammation in the cells that line the blood vessels that in turn trigger fibrin deposits --fibrin is part of the clotting system - but rarely show up on standard tests like ESR
this pattern of many seemingly unconnected symptoms and negative tests is very common in sufferers
very few doctors know anything about it as its am emerging zoonotic disease and it is very difficult to detect in regular blood tests - so much so that serological tests ( test looking for antibodies have been withdrawn all together in some countries (the UK NHS for instance)
i also had spherocytosis' on blood smears - the infectious disease doctor could not find an infection so sent me for genetic testing for 40 known gene variants that can cause hereditary spherocytosis - i was negative for all known genes associated with the condition
i later found i was infected with bartonella - via Giemsa stained thin blood smears - a old WHO approved technique for testing for blood born pathogens.
i have however been improving with treatment focussed on this infection - but it is a long haul after being ill for many years
a very good primer by one of the worlds foremost mainstream researchers on bartonella is here
the group at that university have tested large groups of vets, and sewerage workers and people with rheumatic diseases and found a very high incidence of infection. so its much more common than is commonly recognised. CFS and Fibromyalgia are both considered rheumatic diseases in my country - so i suspect there is a pretty high incidence in this population also. so i try to raise awareness.
there is a support group for people with these infections here
(in this thread i describe how i was able to find it in my blood smears by teaching myself microscopy)
https://www.healingwell.com/community/default.aspx?f=30&m=4268122&p=4
i am not on this forum too much - but i am available on the healingwell one most days
all the best!
i have also been diagnosed with CFS - but have recently found that i actually have a chronic bacterial infection that is driving my symptoms - which are very similar to yours.
i have spoken with several other people with this infection and they report the same tiny red spots or blisters in the skin that have hard cores of material like in your photos inside them.
the infection is called Bartonellosis - after the bacteria that causes it - various species of the genus Bartonella
it is mainly zoonotic - being spread from animals to humans from the bite of biting insects or other arthropods - like biting flies, fleas and ticks.
Pet owners ( cats and dogs in particular carry it) , those with outdoor lifestyles, farmers and vets are at increased risk.
it causes a host of different symptoms -and they tend to be different in each individual infected person - but they are mostly caused by its ability to infect and cause inflammation in the blood vessels ( vasculitis ) in particular small vessel disease - which effect blood flow in all tissues and organs - leading to an array of symptoms.
the type of symptoms you mention are pretty much stereotypical of Bartonellosis - in particular
-fatigue
-weakness
-POTS
-allergies and food sensitivities/ chemical sensitivities
-vision problems
-skin rashes of many varying types ( a particular type with stretch mark like streaks is highly diagnostic but typically only occurs in a fraction of patients )
-mood issues like anxiety, depression and even rage are v common - esp in younger people
-blood clotting issues are also very common - as the organism causes inflammation in the cells that line the blood vessels that in turn trigger fibrin deposits --fibrin is part of the clotting system - but rarely show up on standard tests like ESR
this pattern of many seemingly unconnected symptoms and negative tests is very common in sufferers
very few doctors know anything about it as its am emerging zoonotic disease and it is very difficult to detect in regular blood tests - so much so that serological tests ( test looking for antibodies have been withdrawn all together in some countries (the UK NHS for instance)
i also had spherocytosis' on blood smears - the infectious disease doctor could not find an infection so sent me for genetic testing for 40 known gene variants that can cause hereditary spherocytosis - i was negative for all known genes associated with the condition
i later found i was infected with bartonella - via Giemsa stained thin blood smears - a old WHO approved technique for testing for blood born pathogens.
i have however been improving with treatment focussed on this infection - but it is a long haul after being ill for many years
a very good primer by one of the worlds foremost mainstream researchers on bartonella is here
the group at that university have tested large groups of vets, and sewerage workers and people with rheumatic diseases and found a very high incidence of infection. so its much more common than is commonly recognised. CFS and Fibromyalgia are both considered rheumatic diseases in my country - so i suspect there is a pretty high incidence in this population also. so i try to raise awareness.
there is a support group for people with these infections here
(in this thread i describe how i was able to find it in my blood smears by teaching myself microscopy)
https://www.healingwell.com/community/default.aspx?f=30&m=4268122&p=4
i am not on this forum too much - but i am available on the healingwell one most days
all the best!
SWAlexander
Senior Member
- Messages
- 1,670
Finally, I got it.
What a diagnosis Oddisee!
These are NOT Petechien.
I have a combination of 2. DNA and blood tests confirmed:
Henoch-Schonlein Purpura and X linked Ichthyosis.
# 1 Henoch-Schonlein Purpura What is the disease HLA DR4?
HLA-DRB1 rs i717497 chromosome 6 mutation in rheumatoid arthritis?
Henoch-Schonlein purpura is a disease that involves inflammation which causes blood vessels in the skin, intestines, kidneys, and joints to start leaking. The main symptom is a rash with numerous small bruises, which have a raised appearance, over the legs or buttocks. Other symptoms can include joint and abdominal pain as well as kidney impairment. HSP most commonly occurs in children and in boys more than girls. Adults who develop it generally experience more severe cases.
#2 :
What diseases are related to ichthyosis vulgaris?
Acquired ichthyosis vulgaris has a different cause. A disease usually triggers it. Diseases that can trigger it include long-term kidney failure, different types of cancer (especially lymphoma), sarcoidosis,
Now with the help of others, we are searching for the trigger in both cases.
Is it herpes or Covid or even something else? I don´t know yet.
What a diagnosis Oddisee!
These are NOT Petechien.
I have a combination of 2. DNA and blood tests confirmed:
Henoch-Schonlein Purpura and X linked Ichthyosis.
# 1 Henoch-Schonlein Purpura What is the disease HLA DR4?
HLA-DRB1 rs i717497 chromosome 6 mutation in rheumatoid arthritis?
Henoch-Schonlein purpura is a disease that involves inflammation which causes blood vessels in the skin, intestines, kidneys, and joints to start leaking. The main symptom is a rash with numerous small bruises, which have a raised appearance, over the legs or buttocks. Other symptoms can include joint and abdominal pain as well as kidney impairment. HSP most commonly occurs in children and in boys more than girls. Adults who develop it generally experience more severe cases.
#2 :
What diseases are related to ichthyosis vulgaris?
Acquired ichthyosis vulgaris has a different cause. A disease usually triggers it. Diseases that can trigger it include long-term kidney failure, different types of cancer (especially lymphoma), sarcoidosis,
Now with the help of others, we are searching for the trigger in both cases.
Is it herpes or Covid or even something else? I don´t know yet.
i do not wish to distract you if you feel you are on the right track but
i just read you post about back surgery with unusual growth - bartonella is known to cause infection in and growths in the bones - especially spine and pelvis.
it is also associated with antiphospholipid syndrome. That condition is due to the body creating antibodies to the lipids that the hosts red blood cells membrane is made from. Bartonella infects the red blood cells of its hosts - causing the hosts defences to attack the infected red blood cells in an effort to clear the infection - over time antibodies to the red blood cells membrane lipids can develop
IV vancomycin is active for bartonella - but long courses are often required - relapse is common
i also read a case report the other day about co-infection of bartonella and COVID 19 causing exacerbated illness and confusing array of symptoms putting the patient in hospital
heparin or other fibrinolytic often agents help patients with symptoms as their blood is typically in a hyper coagulable state - even though ESR is typically low
v few doctors treat this disease - but those that do often use corticosteroids to try to reduce inflammation and help the hosts immune function during treatment
again - only you can direct your diagnosis odyssey - and i do not wish to intrude on that - i have been through my own such journey for many years so i know what it like - but if the path you are currently on does not work out , given how many things seem to a line up, perhaps keep the possibility of Bartonellosis in mind.
if you did wish to try and rule it out
testing is problematic - especially in the main stream labs as serology is v unreliable for bartonella
PCR also difficult because the bacteria are not evenly distributed in the blood - so its hit and miss
but
-Galaxy diagnostics have about the best test at the moment - a DD-ePCR test - but it is expensive
-Igenex have a multi-species bartonella immunoblot - which is probably the next best - and less expensive
good luck!!
i just read you post about back surgery with unusual growth - bartonella is known to cause infection in and growths in the bones - especially spine and pelvis.
it is also associated with antiphospholipid syndrome. That condition is due to the body creating antibodies to the lipids that the hosts red blood cells membrane is made from. Bartonella infects the red blood cells of its hosts - causing the hosts defences to attack the infected red blood cells in an effort to clear the infection - over time antibodies to the red blood cells membrane lipids can develop
IV vancomycin is active for bartonella - but long courses are often required - relapse is common
i also read a case report the other day about co-infection of bartonella and COVID 19 causing exacerbated illness and confusing array of symptoms putting the patient in hospital
heparin or other fibrinolytic often agents help patients with symptoms as their blood is typically in a hyper coagulable state - even though ESR is typically low
v few doctors treat this disease - but those that do often use corticosteroids to try to reduce inflammation and help the hosts immune function during treatment
again - only you can direct your diagnosis odyssey - and i do not wish to intrude on that - i have been through my own such journey for many years so i know what it like - but if the path you are currently on does not work out , given how many things seem to a line up, perhaps keep the possibility of Bartonellosis in mind.
if you did wish to try and rule it out
testing is problematic - especially in the main stream labs as serology is v unreliable for bartonella
PCR also difficult because the bacteria are not evenly distributed in the blood - so its hit and miss
but
-Galaxy diagnostics have about the best test at the moment - a DD-ePCR test - but it is expensive
-Igenex have a multi-species bartonella immunoblot - which is probably the next best - and less expensive
good luck!!
SWAlexander
Senior Member
- Messages
- 1,670
I truly appreciate your encouragement. Thank you.
Since I´m living now in Germany I had to find a lab here and I hope this is the right one. https://www.arminlabs.com/en
I will drive directly to the lab, which is 86 km away, but I need someone to take me since my skeletal muscles are too weak for long distant driving.
I have a question regarding vancomycin. In 2016 was given vancomycin via PICC line for over 8 weeks (sepsis). If in fact, I have had multi-species bartonella shouldn't the problem be solved?
I would like to hear your opinion.
Thanks.
Armin is a good lab - but they only use approved tests from recognised manufacturers
and so far there are no generally available tests for bartonella that are very good at detecting it
i had been sick since 2015 - and i was tested by Armin labs in Germany for bartonella in 2019 -
and the results were negative
however, this turned out to be a false negative - as here are some images from my blood smears slides stained with Giemsa in 2021
only bartonella causes these rings of pale vacuoles in infected red blood cells - so the finding is definitive for bartonellosis. - you can also see the same abnormal blue fragments and pretty sever platelet aggregation in my blood as in a confirmed Bartonellosis patients blood
the leading expert in Bartonellosis believes standard serological tests are probably in the region of only 25% sensitive
this paper by Breitschwerdt and team shows how poor most test methods are ( the papers comparison is in dogs - but its works the same in humans )
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308881/
this is where specialist labs come in
i believe igenex is accessible from Germany - possibly Galaxy also - blood samples can be fedex'd - but you could contact them to ask for teh specifics
the igenex test is a multispecies immuno blot or western blot - it is still a serology based test - but it uses many antigens from multiple species - thereby increasing the chances of detection
the galaxy test is the most advanced - it uses a special culture medium based on insect lymph fluid that bartonella likes, to culture the patients blood samples in to multiply any bacteria - and then runs digital droplet PCR test on the resultant culture - they also sample the patients blood 3x to increase the chance of getting bacteria to culture ( you can see the lengths they have to go to to get enough bacteria in the sample to be reliably detected ) they did also publish a peer reviewed validation study for this test in one of the medical journals.
unfortunately 8 weeks of even IV drugs is not guaranteed to cure Bartonellosis
doctors specialising in treating this disease often do so with combinations of antibiotics - minimum 2 diff antibiotics - like Clarithromycin and Rifampicin - and up to 4 different antibiotics for up to 2 years (more in complex cases)
8 weeks of a single IV antibiotic might well be enough to knock back the infection and gain some symptom relief - but the infection is prone to relapse if not treated enough - so if you do in fact have bartonella - its quite possible if not likely that this has happened
as another example - i took 6 months of combined oral doxycycline, azithromycin and rifampicin the year before the slides above were taken - i had some improvement - perhaps 25-30% more function than before abx - but relapsed over the following months.
this paper from Johns Hopkins university goes some way to explaining why bartonella is so hard to treat -
after logarithmic growth the bacteria forms persister type cells that are in a very low metabolic state - so not taking in nutrients etc from their surroundings - and this makes them very hard to kill with standard antibiotics - and the ones that work for growing cells tend not to work well for persister cells / stationary phase growth
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6628006/
bartonella are also intracellular - and the concentrations of abx that get inside the cells membranes are lower than outside - so again this gives the bacteria a survival advantage
in my case i also tested positive for lyme at Armin - which is common in people with bartonella - so treatment is more difficult.
testing for lyme or other tick born infections is worthwhile if you find bartonella - as having one arthropod born infection increases the probability that you may also have another - as it is very strong evidence of arthropod born bacterial transmission - and many of these biting things carry more than one infection. It also affects treatment decisions. The lyme tests are actually better than the bartonella ones !
its a rabbit hole into another world - but so far i am around 50% recovered to my former high functioning self - better on some days.
the youtube video i posted is a great primer on the topic - you will see those guys are proper medical professionals - not cranks pumping out clickbait.
sorry for the brain dump - i know its a lot to take in - and i feel its important not to simply proffer opinion as everybody on the internet has one of those and they are not always helpful, so i try to present authoritive sources to support what i am offering
hope this is of some help
and so far there are no generally available tests for bartonella that are very good at detecting it
i had been sick since 2015 - and i was tested by Armin labs in Germany for bartonella in 2019 -
and the results were negative
however, this turned out to be a false negative - as here are some images from my blood smears slides stained with Giemsa in 2021
only bartonella causes these rings of pale vacuoles in infected red blood cells - so the finding is definitive for bartonellosis. - you can also see the same abnormal blue fragments and pretty sever platelet aggregation in my blood as in a confirmed Bartonellosis patients blood
the leading expert in Bartonellosis believes standard serological tests are probably in the region of only 25% sensitive
this paper by Breitschwerdt and team shows how poor most test methods are ( the papers comparison is in dogs - but its works the same in humans )
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308881/
this is where specialist labs come in
i believe igenex is accessible from Germany - possibly Galaxy also - blood samples can be fedex'd - but you could contact them to ask for teh specifics
the igenex test is a multispecies immuno blot or western blot - it is still a serology based test - but it uses many antigens from multiple species - thereby increasing the chances of detection
the galaxy test is the most advanced - it uses a special culture medium based on insect lymph fluid that bartonella likes, to culture the patients blood samples in to multiply any bacteria - and then runs digital droplet PCR test on the resultant culture - they also sample the patients blood 3x to increase the chance of getting bacteria to culture ( you can see the lengths they have to go to to get enough bacteria in the sample to be reliably detected ) they did also publish a peer reviewed validation study for this test in one of the medical journals.
unfortunately 8 weeks of even IV drugs is not guaranteed to cure Bartonellosis
doctors specialising in treating this disease often do so with combinations of antibiotics - minimum 2 diff antibiotics - like Clarithromycin and Rifampicin - and up to 4 different antibiotics for up to 2 years (more in complex cases)
8 weeks of a single IV antibiotic might well be enough to knock back the infection and gain some symptom relief - but the infection is prone to relapse if not treated enough - so if you do in fact have bartonella - its quite possible if not likely that this has happened
as another example - i took 6 months of combined oral doxycycline, azithromycin and rifampicin the year before the slides above were taken - i had some improvement - perhaps 25-30% more function than before abx - but relapsed over the following months.
this paper from Johns Hopkins university goes some way to explaining why bartonella is so hard to treat -
after logarithmic growth the bacteria forms persister type cells that are in a very low metabolic state - so not taking in nutrients etc from their surroundings - and this makes them very hard to kill with standard antibiotics - and the ones that work for growing cells tend not to work well for persister cells / stationary phase growth
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6628006/
bartonella are also intracellular - and the concentrations of abx that get inside the cells membranes are lower than outside - so again this gives the bacteria a survival advantage
in my case i also tested positive for lyme at Armin - which is common in people with bartonella - so treatment is more difficult.
testing for lyme or other tick born infections is worthwhile if you find bartonella - as having one arthropod born infection increases the probability that you may also have another - as it is very strong evidence of arthropod born bacterial transmission - and many of these biting things carry more than one infection. It also affects treatment decisions. The lyme tests are actually better than the bartonella ones !
its a rabbit hole into another world - but so far i am around 50% recovered to my former high functioning self - better on some days.
the youtube video i posted is a great primer on the topic - you will see those guys are proper medical professionals - not cranks pumping out clickbait.
sorry for the brain dump - i know its a lot to take in - and i feel its important not to simply proffer opinion as everybody on the internet has one of those and they are not always helpful, so i try to present authoritive sources to support what i am offering
hope this is of some help
SWAlexander
Senior Member
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- 1,670
I´m very thankful for every word in your "brain dump". You open another window to a long-standing problem.
I´ll contact Galaxy and ask for their procedure.
False negative results are very common. Sad.
Would you allow me to share "some" of your information with some of my ME friends?
of course feel free
one further piece of information that could be helpful to you or others
there is a skin symptom that occurs in something like 25% of chronic bartonella patients -
its called "Bartonella Striae" and is often mistaken for stretch marks - but is typically a vivid red/purple zig-zag or linear set of marks in the skin - they differ from stretchmarks in the fact that they can occur in people who have not gained weight suddenly and in the direction
the can appear anywhere - but common areas are -
-join of armpit/chest/shoulder area
-upper thigh / groin
-belly
-lower back
the significance is that if these are confirmed - its essentially better than a blood test in terms of confirming Bartonellosis - as bartonella is the only infection known to cause this skin manifestation ( unfortunately, as i mention they only seem to appear in a small fraction of all infected persons - so not having them doesn't really signify anything). A google search brings up some representative examples (but this presentation is in the scientific literature also)
if bartonella does turn out to be the cause of you - or your friends issues - some support resources are:
as i mentioned a Lyme and tick born disease support forum here:
https://www.healingwell.com/community/default.aspx?f=30
i am not a fan of Facebook - but there is a well moderated patient support and education group called "breaking down bartonella" with many members getting treatment from respected doctors ( mainly located in the USA i think)
https://www.facebook.com/groups/1104493829902071/
finally - there are some closely related organisms that can cause v similar disease symptoms - mainly Brucella, Rickettsia, Q-fever - generally regarded as more rare compared to bartonella - and older text books tend to say they cause only acute febrile illnesses - but there is evidence that some of them may cause chronic illness in humans - v much like bartonella.
all the best!!
SWAlexander
Senior Member
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I appreciate your information.
I have been sharing now, mainly in Germany. However, it is difficult for people to adopt the Bartonella idea. In addition, there is no lab that could perform highly qualified tests for Bartonella in Germany.
EBV/Herpes is easier but how do I know if the results are valid?
In addition, I suffer now from enormous collagen reduction and epidermis pealing.
These are my tests from 2021.
yes, i understand
i think the problem originates in mis-education of our medical practitioners - who are basically 30 years behind the current research as that what is in the medical books they are taught from today - so this gap always exists.
Then having spent 6-7 years studying - most come out of the establishment believing they know more than they do - and that what they know is "the truth" - dogmatic rather than open minded.
but in fact once doctors are in general practice - few have time for ongoing training in what they perceive to be rare diseases - so its a self perpetuating cycle of ignorance.
this paradigm - that bacterial infections are easy to diagnose and easy to treat then trickles down to the general population - as that's what we are told by our doctors.
but take Tuberculosis for instance - a growing problem worldwide - that is also not tested for with serology because its known to be unreliable for TB( chronic infections in general) - and 1-2 years of antibiotic treatment is common - so in the main stream we already know of chronic bacterial infections like this - there are many more examples
i do get that it can be hard for people to accept - it has the surreal quality of a bad dream (layers and layers of worrying details -multiple species, variable symptoms, hard to detect, resistant to treatment etc etc ) - and that makes it something unsettling, i.e. something that we really do not want to be true
but that does not make it wrong - and personally i am committed to dealing with reality, however unpleasant - as that's the only way i think i can get my life back - its just unfortunate if you happen to be infected with one of these under recognised infections.
i do notice that not all but a lot of people in the CFS/ME population seem to be particularly resistant to the idea they could have a bacterial infection - i am not entirely sure way that is.
Perhaps by identifying as a ME/CFS people are somehow self selecting for those people that have already discounted that possibility ( in other words if they did believe that or were open to believing that - they would probably be somewhere else trying to find a treatment or cure - rather than on a CFS forum).
i empathise with everyone with this dilemma - what to believe? - what direction to go in? - as i have been on this search for diagnosis for 8 years myself - and i don't mind admitting that have been down many wrong roads myself - so i know what its like - but i can only raise awareness and provide links to reputable sources of information - and people have to then make up there own minds.
for what its worth - i think that these chronic infections, do things like messing with the gut where 70% of the immune system lives - and they dysregulate the immune system - and when the immune system is confused and dysregulated this may give things like old viruses, that we all have and keep under control most of the time, a chance to be activated to some degree - but i don't think they are the root of the problem for most.
there is also the issue with cross reactivity between bacteria in the proteobacteria phylum and viral infections like EBV - so again serology, though cheap and easy, is just very problematic for chronic infections. that's why we really need new better tests.
there are more links to reputable studies and material in some of my other posts on here on bartonella if needed
again - all the best!
i think the problem originates in mis-education of our medical practitioners - who are basically 30 years behind the current research as that what is in the medical books they are taught from today - so this gap always exists.
Then having spent 6-7 years studying - most come out of the establishment believing they know more than they do - and that what they know is "the truth" - dogmatic rather than open minded.
but in fact once doctors are in general practice - few have time for ongoing training in what they perceive to be rare diseases - so its a self perpetuating cycle of ignorance.
this paradigm - that bacterial infections are easy to diagnose and easy to treat then trickles down to the general population - as that's what we are told by our doctors.
but take Tuberculosis for instance - a growing problem worldwide - that is also not tested for with serology because its known to be unreliable for TB( chronic infections in general) - and 1-2 years of antibiotic treatment is common - so in the main stream we already know of chronic bacterial infections like this - there are many more examples
i do get that it can be hard for people to accept - it has the surreal quality of a bad dream (layers and layers of worrying details -multiple species, variable symptoms, hard to detect, resistant to treatment etc etc ) - and that makes it something unsettling, i.e. something that we really do not want to be true
but that does not make it wrong - and personally i am committed to dealing with reality, however unpleasant - as that's the only way i think i can get my life back - its just unfortunate if you happen to be infected with one of these under recognised infections.
i do notice that not all but a lot of people in the CFS/ME population seem to be particularly resistant to the idea they could have a bacterial infection - i am not entirely sure way that is.
Perhaps by identifying as a ME/CFS people are somehow self selecting for those people that have already discounted that possibility ( in other words if they did believe that or were open to believing that - they would probably be somewhere else trying to find a treatment or cure - rather than on a CFS forum).
i empathise with everyone with this dilemma - what to believe? - what direction to go in? - as i have been on this search for diagnosis for 8 years myself - and i don't mind admitting that have been down many wrong roads myself - so i know what its like - but i can only raise awareness and provide links to reputable sources of information - and people have to then make up there own minds.
for what its worth - i think that these chronic infections, do things like messing with the gut where 70% of the immune system lives - and they dysregulate the immune system - and when the immune system is confused and dysregulated this may give things like old viruses, that we all have and keep under control most of the time, a chance to be activated to some degree - but i don't think they are the root of the problem for most.
there is also the issue with cross reactivity between bacteria in the proteobacteria phylum and viral infections like EBV - so again serology, though cheap and easy, is just very problematic for chronic infections. that's why we really need new better tests.
there are more links to reputable studies and material in some of my other posts on here on bartonella if needed
again - all the best!
SWAlexander
Senior Member
- Messages
- 1,670
I agree with you since I had to learn about the limitation of medical knowledge even among some doctors.
Having experienced 3-time sepsis, in 1980 and 2004 I had C-diff. The last was in 2016 (L 4 and 5 surgery), where the hardware was contaminated “GS/CX”: very rare growth: bacteremia: Staph epidermidis, Peptostreptococcus, Peptostreptococcus, one colony Staph caprae, and Corynebacterium.
It is not only ME/CFS community, I was surprised when a German doctor asked me about Corynebacterium bacteria. So, I send her this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688358/
The next big problem is the excessive treatment with fluoroquinolones, a drug that has a “black box warning”. So much is not known or overlooked by the medical profession. For this reason, I search for answers and request specific tests or medication, which of course, they don´t like when the patient has some knowledge.