Lymphadenopathy common with Me/Cfs?

[Davsey27]

I describe me/cfs as a feeling of being poisoned

Even with antivirals like valtrex,immunovir,ldn it feels like I wake up feeling poisoned each morning

Perhaps some of this is due to air pollution in Phoenix which may excerbating underlying pathogens

Seems that chemicals,Mold,and Viruses are triggers for me

I got sick with ME working at a building near the airport in atlanta 5 years ago where there was lots of pollution.This is when I first started noticing swollen lymph nodes in the neck.

I did a followup with a doctor who is not familiar with ME checked the lymphnodes.He found one in the groin area as well and mentioned because you don't have nightweats and Weight loss they are benign

He said we can do a CBV and if it comes back normal this isn't a concern.I told him it's not worth it since mine typically always comes back normal.

It's the NK cell dysfunction that Klimas group in Florida found to be abnormal [low nk activity]

Mentioned I know you mentioned post viral syndrome and then hinted later on as viruses that we have as children.Not sure if he was trying to knock ebv reactivation.

Recheck ultrasound in a few months he said when the radiologist report says do it in 6-8 weeks.

He said just to be clear I don't do disability documentation.I have been on disability for a couple years now

I got concerned and booked an appointment with oncology and hematology next week to rule out cancer which is my main concern

Perhaps the daily lymph node feeling swollen is just part of the chronic inflammation for the past 5 years ?

I mean I wonder how normal is it to have it every single day for years

Here's a copy of the report attached

Thank you

 

[Rufous McKinney]

Hi..........@Davesy27

I just received a lymphoma diagnosis myself. I"m sorry to hear your having issues with this.

Its pretty common to have swollen lymph nodes, and I have had them for years.

I will be having my birthday, and will be seventy very soon. I somewhat doubt you HAVE lymphoma....but it COULD develop eventually (as was the case with me)

I describe me/cfs as a feeling of being poisoned

Agree. It's very chemical. I feel the poisons go drip drip at a cellular level.

"Good Morning, Vietnam, Rise and Shine".

mentioned because you don't have nightweats and Weight loss they are benign

I have had swollen achy lymph nodes for many years. Some seem to go away, others appear.

My current diagnosis is low grade, indolent b-cell lymphoma. And basically there is no treatment for it. Because it's just a very slow thing, that isn't doing anything rapidly, and I have none of the symptoms that trigger the risky treatments.

All the treatments are risky and come with side effects and can even result in reactivations.

Perhaps the daily lymph node feeling swollen is just part of the chronic inflammation for the past 5 years ?

The lymph system seems really affected by all this, plus I am convinced we aren't getting our brains flushed properly when we sleep.

I had a 'hard" thing form on my parotid over several months, which I Noticed, and didn't know what it was. Not like a normal swollen lymph node. So I got that biopsied.

What is Lymphoma? It's some cells behaving badly, and we try to define all this by putting things into neat and tidy boxes with labels. From what I can tell, this is not a neat and tidy definition.

So I am receiving No Treatment for now: it's Watch and Wait. (also, I don't have the other symptoms, the weight loss and fevers etc)

 

[Rufous McKinney]

I mean I wonder how normal is it to have it every single day for years

I think its quite normal for folks with ME CFS....

What my GP said to me about all this (he is a cool doctor, and far less traditional than most)

He said I have been really stressed; that I need to get out of this inflammatory cycle; that likely pushed my lymph system, and therefore, I need to work on 1) correct my sleep cycle to get in on the antiinfl;ammatory part of the early sleep cycle (I tend to stay up late, and so I am working on moving that back); 2) get myself into the hammock ASAP (but without the margaritas)

yes, these nodes can go away, yes, a lymphoma can go into remission.

 

[Zebra]

Hi, @Davsey27

My experience is that enlarged lymph nodes can first be evaluated by fine needle aspiration (FNA). Super simple, virtually painless procedure done in a doctor's office or dedicated FNA Clinic.

If anything suspicious were found in the fluid, it would make sense to make those appts with the specialist you mentioned above.

 

[Rufous McKinney]

Super simple, virtually painless procedure done in a doctor's office or dedicated FNA Clinic.

thats true.......well, it was simpler than I imagined; but not something I intend to make a habit of.

 

[wolves2626]

Well I have that one from time to time. diagnosed after ultrasound and whole body arm pits neck and groin area. called reactive.
and yes because of hidden infections. they were resolved. however now I feel pain in groin area again.
mine started after prostate infection . yes it's true either chronic hidden bacteria, virus fungi and a broken immune system might be tha reason.

 

[Davsey27]

Hi..........@Davesy27

I just received a lymphoma diagnosis myself. I"m sorry to hear your having issues with this.

Its pretty common to have swollen lymph nodes, and I have had them for years.

I will be having my birthday, and will be seventy very soon. I somewhat doubt you HAVE lymphoma....but it COULD develop eventually (as was the case with me)



Agree. It's very chemical. I feel the poisons go drip drip at a cellular level.

"Good Morning, Vietnam, Rise and Shine".



I have had swollen achy lymph nodes for many years. Some seem to go away, others appear.

My current diagnosis is low grade, indolent b-cell lymphoma. And basically there is no treatment for it. Because it's just a very slow thing, that isn't doing anything rapidly, and I have none of the symptoms that trigger the risky treatments.

All the treatments are risky and come with side effects and can even result in reactivations.



The lymph system seems really affected by all this, plus I am convinced we aren't getting our brains flushed properly when we sleep.

I had a 'hard" thing form on my parotid over several months, which I Noticed, and didn't know what it was. Not like a normal swollen lymph node. So I got that biopsied.

What is Lymphoma? It's some cells behaving badly, and we try to define all this by putting things into neat and tidy boxes with labels. From what I can tell, this is not a neat and tidy definition.

So I am receiving No Treatment for now: it's Watch and Wait. (also, I don't have the other symptoms, the weight loss and fevers etc)

Sorry to hear about this mrs Rufous

 

[Davsey27]

Hi, @Davsey27

My experience is that enlarged lymph nodes can first be evaluated by fine needle aspiration (FNA). Super simple, virtually painless procedure done in a doctor's office or dedicated FNA Clinic.

If anything suspicious were found in the fluid, it would make sense to make those appts with the specialist you mentioned above.

The doctor mentioned that fine needle aspiration wasn't necessary

Thanks for the info.Ill see if perhaps another doctor is willing to do it

 

[Rufous McKinney]

The doctor mentioned that fine needle aspiration wasn't necessary

I"m not trying to second guess what is going on with you....I don't think it's a good idea to be doing biopsies unless you really think something major is up.

The aspiration may not be necessary because you mostly likely do not have lymphoma. You have some swollen lymph nodes. And if you have no indicators in your blood work (easier than biopsies)...and no symptoms of B cell issues...

But I am not an expert, so........I'm merely a recent Victim with a bit of direct experience. And I haven't read about this as much as I would like to....

 

[Springbok1988]

An ENT diagnosed me with lymphadenopathy after an ultrasound of my neck. He thought it could be because of acid reflux but treatment for that didn’t seem to help. He then offered to just remove them but I declined. They can be uncomfortable but not worth removing them.

 

[Tammy]

I describe me/cfs as a feeling of being poisoned

I remember having that poisoned feeling. No longer have that symptom thankfully. It got better once by I got my viral load down. The person that I follow, Anthony William says that poisoned feeling is from neurotoxins that a virus puts out.

 

[Garz]

swollen lymph nodes - especially those lasting long term - or coming and going over the long term are a common sign of Bartonellosis

i have been diagnosed with CFS in the past - and fibromyalgia - and my symptoms are a perfect match with the symptoms surveys on this forum -including hallmark CFS symptoms like PEM,
but i have since discovered what i actually have is chronic Bartonellosis( infection with bacteria from the genus Bartonella)..
my symptoms and ability to get stuff done each day is now finally improving with bartonella focussed treatment.

it was a long road to find the root of my problems - older texts state this is a self resolving febrile illness - and GP's have usually never even heard of it - but it turns out they are simply out of date and more modern papers describe many many cases of chronic Bartonellosis causing CFS type symptoms - cognitive deficits, fatigue, digestive issues, swollen lymph nodes, as well as pain syndromes, sleep issues, GERD, POTS, MCAS and histamine intolerances, auto-immunity, and has been implicated in triggering several types of tumour via the chronic inflammation it causes in tissues.

i find myself posting about this a lot recently - as it seems to me that while Bartonellosis will not be the cause for everyone's CFS - i wasted years pursuing a CFS diagnosis and treatment - and at least some of the people here will be in the same boat - if not with Bartonellosis then suffering with another similar infection ( there are many with overlapping symptoms pictures for CFS and Bartonellosis - eg Q-Fever, rickettsia, Brucella etc - they are all real illnesses capable of becoming chronic and once chronic become difficult to diagnose and treat ).

Bartonella in particular is classed as an emerging zoonotic disease - and where there were only 3 species known in the genus in 1980 - there are now over 30 different species discovered - and over half of these have been found to cause illness in humans. its mainly spread to humans from animals via the bite of an infected arthropod - including biting flies, fleas, lice, tics and even spiders have been documented in the scientific literature. its present in the saliva of infected animals so can also be transmitted by the bite or scratch of an animal ( eg a cat or dog or rodent typically|).
its much more common than people realise - in many developed countries 50% of cats that go outside are seropositive for bartonella - indicating its high prevalence.
contact with animals is a risk factor so, farm workers, abattoir workers, hunters, vets, sewerage workers and even pet owners are all at increased risk - but anyone can become infected
(my partner an i were infected by biting flies on a picnic on farmland)

testing is problematic - as serology is demonstrated to be negative in the majority of chronic cases - that are proven by other methods ( eg culture + PCR - or immunofluorescence of tissue)

specialist labs are developing better tests - but they are currently v expensive

this is the best primer on bartonella - pathology, diagnosis and treatment is by the world leading mainstream bartonella research - and the best known board certified MD who specialises in treating Bartonellosis patients

here is a 1 page symptom graphic for bartonella, babesia and borrelia

 

[Rufous McKinney]

Anthony William says that poisoned feeling is from neurotoxins that a virus puts out.

supposedly the eyes really suffer from the neurotoxins....so after my castor oil session...oh gosh my eyes were awful.

 

[Rufous McKinney]

what i actually have is chronic Bartonellosis

How did you diagnose that?

 

[Tammy]

supposedly the eyes really suffer from the neurotoxins....so after my castor oil session...oh gosh my eyes were awful.

Yes, I would think any part of the body could be potentially affected

 

[Garz]

How did you diagnose that?

i have posted about it elsewhere on the forum in more detail
but basically by using an old WHO approved technique for diagnosing blood borne infections - microscopy of thin blood smears with Giemsa stain

this is an emerging disease- so most of the literature on the subject - including what primary care MD's are trained on is out of date - newer literature lists this presentation as highly distinctive for bartonella - eg the work of Dr. B. Robert Mozayeni - a Yale educated mainstream medical doctor specialising in the treatment of Bartonellosis. No other pathogen or medical condition has this highly distinctive presentation so it is definitive for bartonella.

but - to add to the difficulty - once chronic bartonella is not readily found in the blood as it is mainly living inside cells that line the blood vessels ( where it drives most of the symptoms including inflammation, hypoperfusion, microcirculation issues, hypoxia, immune dysregulation etc ) - and there are only very occasional clumps of infected cells with clear vacuoles in them as depicted below. Even when i was much more ill this was only found in around 1 in 10 slides.

the blue fragments - which are likely amyloid deposits and/or some form of abnormal fibrin deposit - are more numerous and are another useful sign

 

[Davsey27]

swollen lymph nodes - especially those lasting long term - or coming and going over the long term are a common sign of Bartonellosis

i have been diagnosed with CFS in the past - and fibromyalgia - and my symptoms are a perfect match with the symptoms surveys on this forum -including hallmark CFS symptoms like PEM,
but i have since discovered what i actually have is chronic Bartonellosis( infection with bacteria from the genus Bartonella)..
my symptoms and ability to get stuff done each day is now finally improving with bartonella focussed treatment.

it was a long road to find the root of my problems - older texts state this is a self resolving febrile illness - and GP's have usually never even heard of it - but it turns out they are simply out of date and more modern papers describe many many cases of chronic Bartonellosis causing CFS type symptoms - cognitive deficits, fatigue, digestive issues, swollen lymph nodes, as well as pain syndromes, sleep issues, GERD, POTS, MCAS and histamine intolerances, auto-immunity, and has been implicated in triggering several types of tumour via the chronic inflammation it causes in tissues.

i find myself posting about this a lot recently - as it seems to me that while Bartonellosis will not be the cause for everyone's CFS - i wasted years pursuing a CFS diagnosis and treatment - and at least some of the people here will be in the same boat - if not with Bartonellosis then suffering with another similar infection ( there are many with overlapping symptoms pictures for CFS and Bartonellosis - eg Q-Fever, rickettsia, Brucella etc - they are all real illnesses capable of becoming chronic and once chronic become difficult to diagnose and treat ).

Bartonella in particular is classed as an emerging zoonotic disease - and where there were only 3 species known in the genus in 1980 - there are now over 30 different species discovered - and over half of these have been found to cause illness in humans. its mainly spread to humans from animals via the bite of an infected arthropod - including biting flies, fleas, lice, tics and even spiders have been documented in the scientific literature. its present in the saliva of infected animals so can also be transmitted by the bite or scratch of an animal ( eg a cat or dog or rodent typically|).
its much more common than people realise - in many developed countries 50% of cats that go outside are seropositive for bartonella - indicating its high prevalence.
contact with animals is a risk factor so, farm workers, abattoir workers, hunters, vets, sewerage workers and even pet owners are all at increased risk - but anyone can become infected
(my partner an i were infected by biting flies on a picnic on farmland)

testing is problematic - as serology is demonstrated to be negative in the majority of chronic cases - that are proven by other methods ( eg culture + PCR - or immunofluorescence of tissue)

specialist labs are developing better tests - but they are currently v expensive

this is the best primer on bartonella - pathology, diagnosis and treatment is by the world leading mainstream bartonella research - and the best known board certified MD who specialises in treating Bartonellosis patients

here is a 1 page symptom graphic for bartonella, babesia and borrelia

You mentioned bartonella,

Sometimes lyme and Mold go hand in hand

Have you looked into Mold?

 

[Davsey27]

I remember having that poisoned feeling. No longer have that symptom thankfully. It got better once by I got my viral load down. The person that I follow, Anthony William says that poisoned feeling is from neurotoxins that a virus puts out.

I have done some ebv tests that showed elevated titers

Perhaps a reactivation

I'm not sure if there is a difference between chronic ebv syndrome and reactivated ebv

I also get the poisoned feeling from toxic mold and outdoor envirnemnal toxins

 

[Garz]

Sometimes lyme and Mold go hand in hand

Have you looked into Mold?

mold is a really tricky one

whilst its factual that some people can be made extremely ill by mold toxins - even tiny amounts in the air
others are entirely unaffected - and its currently not established why this is the case - or how to objectively tell which people are being made ill with mold and which people are being made ill with something else

and where testing for many of these chronic infections is highly problematic - testing for mold is really the wild west

in the lyme community that i participate in - i would say 9 out of every 10 people who report having done mold testing come back positive or over the reference range for at least 1 mold toxin

then there is the whole discussion of whether these mods can actually infect and colonise the body and then go on to pump out mold toxins

some respected MD's who treat lyme think its actually a multispecies infection - comprising a number of different organisms including spirochetes like lyme, other bacteria like bartonella, protozoans like babesia and even fungus like candida or other mold species -

it is known that ALL biofilms in nature are multi-species and even multi-phylum in nature - so its reasonable to assume this is the case in humans - i think there is evidence for this in sepsis and in surgical implant infections, catheters etc

once the human immune system starts to be come suppressed by multiple chronic infections i think its possible that molds and fungi that would normally not get a foothold in the body could start to colonise

PCR analysis of things like vegetative growths on heart valves in human patients have borne out this multispecies colony theory - sometimes with very unexpected organisms - like soil fungi or marine bacteria species

personally my illness and my partners started while living in a new build home where she had lived for 3 years prior - no prior illness - no water leaks - we worked in different places.
my illness has not been worsened by living in different homes - or benefited from staying elsewhere for weeks - i also do not seem to react to mold in the environment.

it is therefore not something i have pursued further

 

[Garz]

I have done some ebv tests that showed elevated titers

Perhaps a reactivation

I'm not sure if there is a difference between chronic ebv syndrome and reactivated ebv

not many people - including doctors - and even Lyme doctors seem to be aware of the fact - but the scientific literature has many good references for known cross reactivity between antibodies to lyme and ebv

this means that people with raised ebv titres could well in fact have lyme rather than ebv - or they could have ebv - or they could have both - its just not possibel to say reliably using serology

in fact there is in general a lot of cross reactivity of antibodies to many infections that are capable of causing long term fatiguing illnesses - ebv (virus), lyme( spirochete) , bartonella ( bacteria), toxoplasma(protozoan), q-fever( bacteria) - all bacteria in the alpha proteobacteria group - which include many of the arthropod born chronic infections - seem to be prone to this.

so serology is cheap but a very problematic tool to asses chronic infection

there are PCR tests that should be able to detect actively replicating EBV virus if it is in fact present and active enough to make a person v ill