Is there anyone here who is treating Epstein Barr only or has knowledge of testing and treating this condition?
My CFSi began after "a glandular fever type illness" in 1995 and I still get months long bouts of swollen neck and throat glands, sore throat and generally feeling crappy.
Is there a valuable test to see if this is part of my problem?Are there any Docs in Europe treating this condition?
Kittykins
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Switzerland/Belgium ME/CFSi/FM since 1995 Hypothyroid Addisons
Mercury poisoning -(Andy Cutler Protocol)

Hi Kitty, I picked up a new
HI Kittykins~ You may want
HI Kittykins~
You may want to do some reading at www.hhv-6foundation.org. This site talks primarily about HHV-6 infectionsi, but often HHV-6 and EBVi go hand in hand, so it is best to get tested for both.
I had high antibody titers to HHV-6, EBV and VZV. They have all decreased to normal with valcyte treatment.
Now I'm treating the high antibody titers to Cpni.
It is good for you to get tested for EBV. In the U.S., Focus Diagnostics lab is a good one to use, as one can have some idea of what is a "high" titer based on research being done at Stanford University.
If you go to the HHV-6 website, you will see a link to the conference that is going to be in Baltimore in June. Check out the names of the doctors speaking. That will give you a clue as to what doctors may be in your area (Europe) that can help you.
Best, Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
phyllisann...on Stratton
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phyllisann...on Stratton protocol since May 20, '06; high ANA for many years; mycoplasma positive many years; fibromyalgiai.
Kittykins, EBVi is one of
Kittykins,
EBVi is one of the herpes viruses which many healthy folks also test positive for but for those of us with a weakened immunei system due to a chronic bacterial infection, it wreaks havoc. Dr Jacob Teitelbaum, author of Fatigued to Fantastic says that if the titers for past infection of EBV, CMV or HHV6 (all herpes viruses common to pwCFIDS) you most likely have a reactivated past infection that your immune system is still trying to deal with.
This is similar to what Dr Stratton says about testing for CPni. If the titers are higher than for an average healthy person, you have that as well although if your immune system is compromised due to an infection you might also not be producing enough antibodies to show up in a test! What a conundrum!
Dr David Wheldoni refers to the viral titers as "the henchmen" being present at the scene but not the cause of the main problem of the chronic (bacterial) infection which is weakening you and making you more susceptible to these viruses. I've often heard that by researchers and Drs that treat CFIDSi so this wasn't a new idea. Only treating your EBV won't make you well but it might make you feel a little better while you heal the root cause.
I also take L-lysine which helps immensely in the way I feel and it helps the body handle the herpes type viruses. There are other natural remedies which aid the body to handle these viruses as Raven suggested to you and another one I've used when I had my worst symptoms of nerve pain feeling like shingles (caused by herpes zoster) is Citricidal, a grapefruit seed extract also with antimicrobial effects. Vit D and iodine are also helping me deal with these symptoms now.
To surmise, having a bacterial infection such as Chlamydia Pneumoniae will weaken and damage your immune system to all sorts of other viral and bacterial infectionsi including mycoplasma.
You may test positive for these infections or you may not but you can still use many of the natural treatments which won't harm you and see how you feel even if your Dr says "everybody tests positive for these things." So, depending on your Dr's attitude towards these tests and your own immune system at the time, the tests may or may not be a waste of time and money.
Once you get rid of your chronic bacterial infection which I would say you would have if you're having viral symptoms, then the immune system will handle the viruses and keep them in check and you'll feel much better. In the meantime and during treatment of CPn these herpes viruses may flare or continue to affect you and so it's a good idea to treat them whether it be with supplementsi or pharmaceuticals or both.
Many of the supplementsi used while on CAPi listed HERE help deal with these co-infections and I noticed some die-off and feel somewhat better now even before I started taking any antibioticsi just from using the natural remedies.
3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, myco+ CFIDS/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do___________________________________________________________
NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doHi Timaca,I just wanted to
Hi Timaca,
I just wanted to ask, have you improved clinically from treating the viruses? Also how long were you on valcyte for?
The EBVi test I had done in the UK shows an EBNA IgGi of 440 U/ml (normal < 5 U/ml). Do you think it would be worth me treating?
Many thanks
garcia
CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.
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Hunter: Don't think - experiment
Garcia, Have you looked at
Garcia,
Have you looked at Dr Powell's treatment info? HERE's a link (#3a) and you can read what he says to do for viral infectionsi which will give you a little more info as well.
3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do___________________________________________________________
NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doReenie thanks for the
Reenie thanks for the link. Very open information costs, durations, agents and amounts, pros and cons.
Louise US, CFSi. CPni IgGi, IgA Positive. Bb Positive Western Blot. Wheldon CAPi 6/24/07. NACi, Doxyi, Roxi, Tinidiazole Pulses. VitD-3 4000 IU. Intermittent Cholestyramine,1-2 packets, at bedtime, most often with pulses,and as needed, for Phorphoria and LPSi endotoxini sypmtoms.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
yes, thanks also reenie,
yes, thanks also reenie, very clear.
"Only treating your EBVi won't make you well but it might make you feel a little better while you heal the root cause. "
For this reason, treating EBV/HHV6 is something I am in the middle of looking at now (awaiting energy levels). My health history sounds an awful lot like yours kittykins, almost exact replica ...
M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
Reenie,thanks very much for
Reenie,
thanks very much for that info. It was very useful. Interesting that Dr Powell prefers to use Valtrex rather than the much more expensive Valcyte. I wonder if people have gotten major improvements from Valtrex as some have with Valcyte (e.g. those in the Montoya study)?
CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.
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Hunter: Don't think - experiment
Garcia, from what I see
Garcia, from what I see there in print is that it may be because it needs less oversight due to some of the untoward side effects of the Valcyte. It didn't say what the undesirable effect was nor the cost of test to keep track of it's event which could be considerable for folks self paying.
And then there is that cost factor. 5 month at was it $300? is less than a month of Valcyte, hope I am remembering the figures correctly.
I know from my initial EBVi and HHV6 that were drawn one year ago this week, that at that time they were non-active and negative respectively.
And have improved steadily during this past year of treatment, even with the late starts on the second abxi and the azole.
Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
Kittykins~ Here's a link to
Kittykins~
Here's a link to a recent post of mine on the HHV-6 forum, which gives my progress. I'm Timaca there too...
http://hhv6foundation.proboards101.com/index.cgi?board=antiviral&action=...
Your EBVi test does look elevated. I'm not a doctor, but I would pursue further testing for that and other viruses, so you know what you are dealing with. There is good info on the HHV-6 forum on testing for viruses, both as a link, and in the patient's forum.
http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=26
http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=di...
I apologize in advance for the widened posts....there's probably a way I can avoid that...but I don't know what it is at this particular moment...
Best, Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
I would be very interested
I would be very interested in the protocol if you can get it! Thank you
Kittykins
Switzerland/Belgium ME/CFSi/FM since 1995 Hypothyroid Addisons
Mercury poisoning -(Andy Cutler Protocol)
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Switzerland/Belgium ME/CFSi/FM since 1995 Hypothyroid Addisons
Mercury poisoning -(Andy Cutler Protocol)
i would be interested
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.