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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do you have other conditions with your CFS

Which statement best describes your CFS?

  • I have one of the following conditions in addition to CFS (SEE FIRST COMMENT FOR THE LIST)

    Votes: 22 78.6%
  • I I have CFS but I do not have any of the specific conditions listed (can still have others tho)

    Votes: 5 17.9%
  • Not sure

    Votes: 1 3.6%
  • I choose not to answer this question

    Votes: 0 0.0%

  • Total voters
    28

vision blue

Senior Member
Messages
1,910
Here is the full choice with the whole list
I have one or more of the following in addition to CFS::


1) autoimmune rheumatological
condition (do not include
fibromyalgia)


,2) cancer,

3) EDS,

4) Lyme disease or other tick borne infection,

5) MCAS,

6) MS,

7) known big chemical exposure

8) dysautonomia (besides POTS)

9) , Autoimmune condition (besides rheum, besides thyroid, besides fibromylagia
) ,
10) Parkinson’s Disease ,


11) POTS,

12) re-activating EBV,

13) shingles more than twice,

14) thyroid condition of any type
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,467
I "had" mononucleosis on four occasions in the olden days. Doctors said that was impossible.

chances are those were reactivations, right?

the rest I just am not good at getting diagnoses.
 

vision blue

Senior Member
Messages
1,910
I "had" mononucleosis on four occasions in the olden days. Doctors said that was impossible.

chances are those were reactivations, right?

the rest I just am not good at getting diagnoses.

Yes, that would def be EBV reactivations. As you know, once upon a time, some though chronic EBV was THE cause of CFS. At least they tried back then... I should have said "chronic or frequently reactivated EBV" but too late to change the poll answer.

Doesn't look like anyone wants to take this poll though, so won't have the data.
 

vision blue

Senior Member
Messages
1,910
Still hoping more people wiill take this overview poll too. (reminder there's a total of 3 polls in the series)
 

Garz

Senior Member
Messages
374
i have done all the polls now and there is very high alignment between my symptoms and co-morbidities and the top symptoms and co-morbidities of all others here who took the polls

the cause of my CFS and PEM is now known and responding to treatment - i have Bartonellosis - a common chronic bacterial infection

the degree of alignment between my symptoms and the general population who took the poll makes me wonder how many others might have this very hard to diagnose infection.

i also found it interesting that EBV reactivation i on the list

not many people know that EBV and Lyme disease antibodies cross react - hence most people who are chronically ill and have a positive serology test for EBV may just as likely have exposure to Lyme disease - its not really possible to reliably tell which from serologic tests.

i find it interesting in this context because a positive serologic EBV test could point to exposure to Lyme and that points to exposure to a vector born disease carrying arthropod - which is also how bartonella is transmitted. so the EBV antibodies could be a proxy marker for things like Bartonella.

high titres of some EBV antibodies is a common finding in persons with vector born diseases - often extremely high numbers - or in an unusual pattern i.e. one antibody extremely high but not the others that are expected to follow - which is unusual - and without exception those i know of who have had follow up qPCR tests for EBV active replication have all been negative.

i became ill 7 months after being bitten by biting flies on farmland - and immediately after a brief viral like illness which may have been the bartonella infection taking hold or it may have been a simple virus which lowered my resistance to the smouldering bartonella infection.

in the interceding time i had some odd mild symptoms coming and going, but nothing life limiting, or even enough to cause me to book a doctors appointment. so, it is not always right after a bite or scratch and it can be very difficult to track where or when you were exposed / infected
 
Messages
49
"positive serology test for EBV" I think that's the test I'm interested in getting, re my suspicion EBV is involved with my ME, although I've never been offered it.

I remember being bitten by a biting fly when I was a child. It's probably not relevant, but the ear I was bitten on had a habit of becoming sore again, just about every year, as there was something still lurking. This was many years before my ME, though, and it hasn't happened for a few years, now.
 
Messages
49
None of those, that I know. I do seem to collect co-morbidities along the way, though.

My first was when started with viral conjunctivitis about a year after contracting ME, which many years later, I've never shifted.
 

Garz

Senior Member
Messages
374
I remember being bitten by a biting fly when I was a child. It's probably not relevant, but the ear I was bitten on had a habit of becoming sore again, just about every year, as there was something still lurking. This was many years before my ME, though, and it hasn't happened for a few years, now.

maybe have a look at an image search for "lyme ear lymphocytoma" its a well known symptom that occurs in lyme - esp in children
1672318549328.png
1672318549328.png
 
Messages
49
No, didn't look like that. More a mattery, creamy crust used to form, it seemed to somehow come out of the skin and then dry and make my ear slightly sore again. But it was always at the location of where I was bit. I didn't really seem to have any other symptoms, either. I can't now remember whether the actual bite made me feel ill at the time, either.

Thanks anyway.
 
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