The Infectious Mononucleosis / Glandular Fever Poll for ME/CFS and Fibromyalgia

[Lissa]

I was diagnosed with IM twice - first in 8th grade and then again a couple of years later. But Mycoplasma Pneumonia four years ago (at age 62) was the infection from which I haven't recovered.

Ditto for me, IM once in high school and then again as a senior in college. Also had pneumonia twice, once in high school and then again when I was 25. Roller coaster ride of good/poor health for a couple decades and then hit with full blown CFS after a pneumonia-like respiratory infection at age 42.

 

[Justarose123]

I was 13 when I wAs diagnosed with severe mono, I had it for weeks with a enlarged spleen and liver, my liver test over the years since then are mostly abnormal.
I've been tested for every kind of hepatitis only to come up negative each time.
One of my doctors thinks it was damaged some when I had the mono.
I was 52 when diagnosed with hypopitituary problems and EBV. My doctor said to me EBV what's this about?? Like I knew anything at the time about it?

 

[Cort]

Ditto for me, IM once in high school and then again as a senior in college. Also had pneumonia twice, once in high school and then again when I was 25. Roller coaster ride of good/poor health for a couple decades and then hit with full blown CFS after a pneumonia-like respiratory infection at age 42.

You guys are such classic cases - I'm jealous! No IM for me...
No infections either - no triggers at all - ..just a gradual slide probably over a month into ME/CFS in college...

 

[Cort]

I was 13 when I wAs diagnosed with severe mono, I had it for weeks with a enlarged spleen and liver, my liver test over the years since then are mostly abnormal.
I've been tested for every kind of hepatitis only to come up negative each time.
One of my doctors thinks it was damaged some when I had the mono.
I was 52 when diagnosed with hypopitituary problems and EBV. My doctor said to me EBV what's this about?? Like I knew anything at the time about it?

Well, I got a good laugh out of it.

 

[Lissa]

You guys are such classic cases - I'm jealous! No IM for me...
No infections either - no triggers at all - ..just a gradual slide probably over a month into ME/CFS in college...

Cort- have you had any back or neck injuries? Even mild... Anything that has affected posture? There have been some very intriguing threads here about possible correlations! I don't mean to imply that THAT is the cause or answer to it all.... It's just extremely interesting that there seems to be a commonality amongst some of us. Just curious if that might resonate for you?

 

[Cort]

Cort- have you had any back or neck injuries? Even mild... Anything that has affected posture? There have been some very intriguing threads here about possible correlations! I don't mean to imply that THAT is the cause or answer to it all.... It's just extremely interesting that there seems to be a commonality amongst some of us. Just curious if that might resonate for you?

I had a concussion when I was a teenager - otherwise nothing...

 

[justME]

so never sore throats or lymph nodes Cort?

 

[Cort]

It funny. I never had sore lymph nodes. (I do have sore areas below my ears but I think those are sore salivary glands. I had a constant sore throat for the first ten or fifteen years and then it disappeared.

 

[justME]

then you have/had EBV, she stubbornly typed snogged a pale-looking collegegirl somewhere that first month, by any chance?

also the earlier concussion could've made it go straight for the brain, as it seeks out nerves & weak spots, in my experience

 

[TigerLilea]

I had mono in grade 12 in May of 1977. There were about 25 of us students who all got it at the same time, plus two of the teachers. I recovered fully within a month of getting it.

 

[Carollynn]

My son (now 10 years old) and I contracted EBV from my niece (a sophomore in high school) when we shared a berry cobbler (in 2010). We both have CFS/Fibro. My aunt contracted EBV from her 5 year old son 43 years ago. She was diagnosed CFS, then fibro, pre-lupus and now severe lupus. Her son also suffers from CFS/Fibro. We (my son and I) have co-infections (mycoplasma pneumonia, Chlamydia pneumonia). We have been on antibiotic therapy, supplements and immune boosters for 6.5 months. My son is also on antivirals. We have both improved significantly.

Hi Kizmit--It's nine months since you posted about the antibiotics, supplements, and immune boosters. How are you and your son dong now? Has anything dropped out of the regimen, and anything been added? Is your doctor measuring pathogens to see if their loads have gone down? I look forward to your reply.--CWB

 

[kizmit]

Hi Carollynn,
We have both improved leaps and bounds! We are functional now--I am home schooling him (something I thought would NEVER be possible). My brain fog is gone. I still have trouble with my memory, but I can create a schedule and complete it now. I can go to the grocery store as apposed to ordering online. I can drive (at night also). My frozen shoulder (had this for 10 years) has cleared completely and my thumb joint is almost fully functional. I made homemade cookies, several pies and even dinner for the first time in many, many years. My son can play, he can complete his homework. His sore throats, infections, muscle pain, sinus infections.....are gone. We are both off of our inhalers and all allergy medicine. We were able to go Christmas caroling and participate in other holiday events.
The Rheumatologist we are seeing initially diagnosed me as possible "pre-lupus", but some of my previously positive tests are now coming back negative. He is monitoring our pathogens and YES the loads are steadily going down. We draw 7 vials every three months--he watches EVERYTHING!
We have added diflucan for systemic yeast. I read about this and thought --"Really???!!!"--I don't have that--but, I was wrong. Six weeks later my cognitive functioning has come up to a new level and my stamina has improved again. My son's herx reactions have always been much worse than mine so we start him at very low doses and gradually build up. I am starting antivirals next week. Antivirals were key for my son--he is now on--Valacyclovir 1 gram am, 1 gram pm--I cut them for him as I saw a partially digested one in his stool. I will be starting Celecoxib 200mg 2x/day with Famciclovir 500 mg 2x/day--I believe another doctor uses these together, but I cannot recall his name. We are currently taking Z-pac 250 everyday, but started taking it at 3x/week.
I highly recommend everyone to be tested for pathogens--finding a doctor to do the testing is difficult. Our doctor has been fabulous--he mails our blood draw kits to us. We take them to a Quest draw station and Quest draws and then mails them off for us. Quest runs some of the tests, the doctor runs some of the tests at the lab in his office and others are sent out to specialty labs.
I can post a list of supplements if anyone is interested. My address is; lori.serpa@hotmail.com if I can be of help to anyone!

 

[6String]

I had infectious mononucleosis twice - in the 8th grade and again in high school (in the 60's). I don't know if it's a universal nick-name, but here in New England it was also called the Kissing Disease. I've also had pneumonia twice - normal bronchial pneumonia at age 33 (I'm now 66) and Mycoplasma Pneumonia (an atypical pneumonia) 5 years ago - the illness from which I've never recovered. I also was exposed to off-gassing of toxins in a newly constructed office (Sick Building Syndrome) in 2010 and had four fairly significant head injuries at ages 3, 10, 13 and 16. I think I've seen all of those - Mono, Mycoplasma PNu, exposure to toxins and head injuries as correlates / suspected causes of ME/CFS.

 

[Lissa]

I had infectious mononucleosis twice - in the 8th grade and again in high school (in the 60's). I don't know if it's a universal nick-name, but here in New England it was also called the Kissing Disease. I've also had pneumonia twice - normal bronchial pneumonia at age 33 (I'm now 66) and Mycoplasma Pneumonia (an atypical pneumonia) 5 years ago - the illness from which I've never recovered. I also was exposed to off-gassing of toxins in a newly constructed office (Sick Building Syndrome) in 2010 and had four fairly significant head injuries at ages 3, 10, 13 and 16. I think I've seen all of those - Mono, Mycoplasma PNu, exposure to toxins and head injuries as correlates / suspected causes of ME/CFS.

I can totally relate! Multiple instances of varied "suspected causes"... It makes your head spin trying to figure it all out!

 

[HurricaneTexas]

I just stumbled on this thread, and since I'm pretty new here I'm still learning the lingo - more acronyms than the military.

I was diagnosed with mono my senior year of high school while recovering from having all 4 wisdom teeth removed. (We called it the kissing disease, too 1986).

I was out of school for a month and couldn't go back to work for 2 months. Afterward I was extremely healthy and active again for 20 years, but I have always had chronic sinus infections all of my life.

When I was 39 I had a complete pelvic prolapse repair, which it was later discovered was due to Ehlers-Danlos. I never did come back from that surgery.

It was a major surgery done at Cleveland Clinic in south Florida. I did come out with a nice MRSA which I battled while living in my house that I later found out had a black mold infection.

Eventually I quit work and applied for disability. I ended up at Nancy Klimas' clinic at univ of Miami, seen by Irma Rae (I really miss seeing her, she was so awesome after several years of idiot Dr's) and she diagnosed CFS & FM.

Unfortunately, I had to move out of state not too long after and have been lost as to where to turn to for help. We are considering flying me back there a few times a year to see Dr Irma Rae again.

 

[HurricaneTexas]

Done. I hope this helps.

 

[Carollynn]

Hi Carollynn,
We have both improved leaps and bounds! We are functional now--I am home schooling him (something I thought would NEVER be possible). My brain fog is gone. I still have trouble with my memory, but I can create a schedule and complete it now. I can go to the grocery store as apposed to ordering online. I can drive (at night also). My frozen shoulder (had this for 10 years) has cleared completely and my thumb joint is almost fully functional. I made homemade cookies, several pies and even dinner for the first time in many, many years. My son can play, he can complete his homework. His sore throats, infections, muscle pain, sinus infections.....are gone. We are both off of our inhalers and all allergy medicine. We were able to go Christmas caroling and participate in other holiday events.
The Rheumatologist we are seeing initially diagnosed me as possible "pre-lupus", but some of my previously positive tests are now coming back negative. He is monitoring our pathogens and YES the loads are steadily going down. We draw 7 vials every three months--he watches EVERYTHING!
We have added diflucan for systemic yeast. I read about this and thought --"Really???!!!"--I don't have that--but, I was wrong. Six weeks later my cognitive functioning has come up to a new level and my stamina has improved again. My son's herx reactions have always been much worse than mine so we start him at very low doses and gradually build up. I am starting antivirals next week. Antivirals were key for my son--he is now on--Valacyclovir 1 gram am, 1 gram pm--I cut them for him as I saw a partially digested one in his stool. I will be starting Celecoxib 200mg 2x/day with Famciclovir 500 mg 2x/day--I believe another doctor uses these together, but I cannot recall his name. We are currently taking Z-pac 250 everyday, but started taking it at 3x/week.
I highly recommend everyone to be tested for pathogens--finding a doctor to do the testing is difficult. Our doctor has been fabulous--he mails our blood draw kits to us. We take them to a Quest draw station and Quest draws and then mails them off for us. Quest runs some of the tests, the doctor runs some of the tests at the lab in his office and others are sent out to specialty labs.
I can post a list of supplements if anyone is interested. My address is; lori.serpa@hotmail.com if I can be of help to anyone!

Hi again Kizmit--Thank you for your detailed reply. How wonderful that you and your son are feeling so much better! I hope the progress continues and holds.

I am fortunate in that Dr. Chia measured pathogens in me early on, and re-tested since. My "cocktail" includes Chlamydophila pneumonia, HHV-3 (zoster/shignels), HHV-4 (EBV), HHV-6, Coxsackie B5 (an enterovirus), and an echovirus. We have observed together how when one is more dominant, the others are less. As soon as we treat the more dominant one, symptoms shift and reveal that another is more dominant, and on and on. So it doesn't surprise me that your pathogens are changing too.

I'm curious about your doctor and his protocols. My GP as well as Dr. Chia are responsive to trying things with me based in well-documented studies. Are you able to footnote the protocols your rheumatologist has prescribed for you? You may well have figured this out together based on information you gathered--which would make it easier tons hare with us. If not, I understand and don't want to put you to any trouble.

Thank you again--Carollynn

 

[HurricaneTexas]

Not to hijack this thread but @HurricaneTexas

Good comments on Dr. Salvato

Dr. Patricia Salvato, in Houston is a long time HIV and CFS/ME M.D.

This guy does peptide shots. I know someone if Fl who also sees Dr Rey who got this and they helped him immensely. He thinks they got him back to work

http://www.comp-health.com/allergy.html

n Austin, Dr. Kendal Stewart at the NeuroSensory Center. He's helped me tremendously with CFS and fibro.

Dr W L Cowden

Thank you so very much for this info! I sincerely apologize for not responding to this until now. I only just figured out how to find my past posts, and any replies.

I will definitely look into these. Thank you, again!

 

[HurricaneTexas]

Don't worry. I didn't even remember posting this. I mean it's 4 months ago. I don't even remember what I posted 5 minutes ago. Lol

Well that's good, at least! I hope you're doing well.