New lab work shows viral and bacteria markers, insights/info welcomed!

[soulfeast]

Early Antigen EBV (64.1. positive is over 10), EBV ab VCA, IgG (> 600, positive is . 21.9), EBV Nuclear Antigen Ab (259.0, positive is .21.9)

Coxsakie IgG A7, A9, A16, A24 all except A16 are 1:1600 and A16 is 1:800 (negative is under 1:100)

HHV-6 IgG (7.49, positive is .0.99) I am reading from here:

http://hhv-6foundation.org/patients/hhv-6-testing-for-patients

Myco Pneumoniae IgG 155 high (this keeps popping up and then disappears then comes back up, positive >320, Indeterminate 100-320)

Chlamydia Pneumoniae IGM titer (1:80, positive is , 1:16) IgG titer is negative...

Looking here:

http://www.cpnhelp.org/

*****************

I see more labs need to be drawn for HHV-6...

I am suspecting that EBV results indicate chronic infection but not sure.

Not sure what to make of Coxsakie results.

Not sure what to make of mycoplasma p results..

Not sure what to make of CPN results with no IgG???

I have markers for systemic scleroderma with lung involvement. I know some people do well on a abx protocol which is very similar to the CPN protocol. Interesting.. My last CAT scan was ok.. but I am to have one again and know something has been going on in my lungs.. like maybe a chronic infection (bacterial and or fungal) or just inflammatory activity due to RAD, mast cells?

Pulmonary did aspergillis labwork.. that's waiting for me and my appt.

I also have burkholderia complex (only seen in immune compromised people or people with cystic fibrosis and rarely for normal people in sinuses) and trichosporon asahii (also immune compromised or people on long term abx... now how the heck to handle THAT with long term abx if need to treat for CPN? .. or lyme for that matter).

MCAS, EDS, POTS, mycotoxin illness, virulent (deadly if more than sinus involvement) fungus and bacteria in sinuses (at least), now all this. What the heck?

 

[heapsreal]

Myco and CNP can be treated with the same antibiotics eg doxy and azithro, maybe go after the ebv as well with famvir. Dropping this infection load might free up your immune system to knock down hhv6 and or mabe famvir could help lower hhv6 levels. coxsakie is generally treated with immune mods like immunovir and the herbal med/sup chia recommends called equilibrant.

I wouldnt start them all at once, maybe antibiotics for a few weeks then add famvir and a few weeks later the immunovir, once stabilized on that and if still required then add the equilibrant. If after all these measures and hhv6 still high then look into valcyte. I would leave valcyte till last as it can knock down neutrophils which you need to help fight bacterial infections.

Hopefully you have a good doc to work with you on this??
You definately copped enough bugs, how long have you had cfsme for?

 

[minkeygirl]

I've been to that CPN website and an earlier protocol recommends starting NAC before ABX.

Also, if you can't tolerate Equilibrant, which I can't, you can get Oxymatrine, the White Tiger Brand.

 

[soulfeast]

Myco and CNP can be treated with the same antibiotics eg doxy and azithro, maybe go after the ebv as well with famvir. Dropping this infection load might free up your immune system to knock down hhv6 and or mabe famvir could help lower hhv6 levels. coxsakie is generally treated with immune mods like immunovir and the herbal med/sup chia recommends called equilibrant.

I wouldnt start them all at once, maybe antibiotics for a few weeks then add famvir and a few weeks later the immunovir, once stabilized on that and if still required then add the equilibrant. If after all these measures and hhv6 still high then look into valcyte. I would leave valcyte till last as it can knock down neutrophils which you need to help fight bacterial infections.

Hopefully you have a good doc to work with you on this??
You definately copped enough bugs, how long have you had cfsme for?

Thanks so much! This makes sense. I have felt so lost. Thank you..

It sounds like it's not uncommon to treat for multiple pathogens at once.. virus and bacterial infection for example? I also have a yeast in my sinuses that is common mostly with people who have had long term abx or have compromised immune systems. It can be deadly if it goes systemic.. so got to factor that in. I have to have info prepared and consolidated to present to my doctor here.. he's very helpful but it required teamwork and work on my end. Thank you so much.

 

[soulfeast]

I've been to that CPN website and an earlier protocol recommends starting NAC before ABX.

Also, if you can't tolerate Equilibrant, which I can't, you can get Oxymatrine, the White Tiger Brand.

Thank you! I am new to the CFS related infections (except Lyme) and this is just over my head at the moment and overwhelming. I do have a question for you and Heapsreal...

It sounds like it's not uncommon to treat for multiple pathogens at once.. virus and bacterial infection for example? I also have a yeast in my sinuses that is common mostly with people who have had long term abx or have compromised immune systems. It can be deadly if it goes systemic.. so got to factor that in. I have to have info prepared and consolidated to present to my doctor here.. he's very helpful but it required teamwork and work on my end. Thank you so much.

 

[minkeygirl]

I'm on Famvir, LDN and I cycle immune modulators. I just started on Doxycycline to see if it will help my brain fog which could be inflammation, infection or who knows what? I will probably start on the oxymatrine just to add another layer.

I know @heapsreal has chronic sinus problems and is always on and off ABX along with A/V's and immune mods. I don't know about the yeast going systemic (Is that what you meant?)

He's the better one to ask about that aspect of it.

 

[heapsreal]

Thanks so much! This makes sense. I have felt so lost. Thank you..

It sounds like it's not uncommon to treat for multiple pathogens at once.. virus and bacterial infection for example? I also have a yeast in my sinuses that is common mostly with people who have had long term abx or have compromised immune systems. It can be deadly if it goes systemic.. so got to factor that in. I have to have info prepared and consolidated to present to my doctor here.. he's very helpful but it required teamwork and work on my end. Thank you so much.

I was told my sinus issues were probably yeast but when i was tested for yeast i tested very low. My doc has done research into sinus infection in cfs and he said the most common cause is staph infection, he said a nasal swab just isnt accurate as it doesnt really tell you whats in the sinuses itself.

I have used a few things that have helped but when i stopped treatment they would just return but i think this was because my immune system was down from the valcyte which can effect neutrophils. So coming of the valcyte helped as well as the immune mods which improved my immune function. One day i just finished a course of abx and it didnt return which was how it normally pans out.

You may have done this but sinusitis is common also with low immunoglobulins, so getting this tested may show you low which could be a cause? There is a few nasal spray that may help , one was called the BEG nasal spray, you find info if u google it, contains 2 abx and another substance to break down biofilms. It was quite irritaing to the nose, another person i was in contact with had issue with this irritation and he watered it down 50% with saline and this reduced irritation but kept working on infection. Doxycycline worked initially but eventually stopped working, i found augmentin and bactrim the best abx to take for my sinusitis. But as i mentioned nothing got rid of it until i improved my immune system.

If u google the pharmacy that make the BEG nasal spray i think they also made sprays for yeast infections also. Email them with questions as they are happy to help you out too.

 

[minkeygirl]

@heapsreal BEG spray is prescription here because of the ABX. I found this pharmacy before I started seeing my NP. I'm not sure if they need an RX

http://www.woodlandhillspharmacy.com/beg_nasal_spray.html

I used a nasal spray that Dr. Teitlebaum uses and it did nothing for me so I'm not sure if my stuff is sinus or not. Time will tell with the Doxycycline.