Hi Kitty, I picked up a new infection with EBVi [2] after a year into my CAPi [3] for Cpni [4]. My doc put me on Valtrex for 5 months.It took a long time to get over it---about 6 months and it really weakened my already fragile immunei [5] system. I began taking Lysine as it counteracts EBV replication. Also avoiding foods with lots of Arginine (EVB needs it to replicate)such as nuts. You may want to look into Iodoral, an iodine supplement. It is supposed to be anti bacterial and antiviral. If you read my recent blog, I took an extra dose and it knocked out a HSV1 flareup I had very quickly. I order it from this site: https://vvv9.com/iodoral/90/ [6] Have some unrefined sea salt at hand if you begin to take it and experience any bad headaches or other symptoms as this is bromine being de-toxed from your system. Just take a little sea salt in water to help get it out of your body. More about iodine on this site: http://www.drbrownstein.com/ [7] I can't say enough good things about iodine supplementation.It is right up there with vitamin Di [8] as a critically important supplement IMHOi [9]!!! Raven CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFSi [1] Also EBV and HHV6

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Feeling 98% well and going for 100! Still testing + for Cpni [4] since June '08.CAPi [3] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [1]. Also EBVi [2] and HHV6 NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]

HI Kittykins~

 You may want to do some reading at www.hhv-6foundation.org.  This site talks primarily about HHV-6 infectionsi [15], but often HHV-6 and EBVi [2] 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 [4].

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 [2], VZV, and HSV1 6/07. Diagnosed with CPni [4] 5/08. On antibioticsi [16] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [17] bid for Cpn and acyclovir for viruses.

phyllisann...on Stratton protocol since May 20, '06; high ANA for many years; mycoplasma positive many years; fibromyalgiai [18]. Kittykins, My husband is an MD who treated EBVi [2] very successfully with courses of metronidazolei [19] when he was in practice. Dr. Stratton indicated to him that it might have been a concurrent infection with CPNi [4]. Nevertheless, one patient had complete resolution and all antibody studies went to ZERO. If you need more info, I can get him to share the protocol. Amd CPN and EBV can coinfect the same person.

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phyllisann...on Stratton protocol since May 20, '06; high ANA for many years; mycoplasma positive many years; fibromyalgiai [18].

Kittykins,

EBVi [2] is one of the herpes viruses which many healthy folks also test positive for but for those of us with a weakened immunei [5] 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 [4]. 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 [21] 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 [1] 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 [15] 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 [13] or pharmaceuticals or both.

Many of the supplementsi [22] used while on CAPi [3] listed HERE [23] help deal with these co-infections and I noticed some die-off and feel somewhat better now even before I started taking any antibioticsi [16] just from using the natural remedies.

3/08 NACi [11] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [24] 100mg, myco+ CFIDS/FMSi [18], Hashimoto's, Psoriasis, PA, IBSi [25], Secondary Addison's

When I change what I believe I change what I do

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NACi [11] 2.4g, Zithi [26] 250mg/MWF, minoi [24] 200mg, Tinii [27] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [28]/FMSi [18], Hashimoto's, Psoriasis, PA, IBSi [25], Secondary Addisons

Don't believe everything you think!  

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 [2] test I had done in the UK shows an EBNA IgGi [29] of 440 U/ml (normal < 5 U/ml). Do you think it would be worth me treating?

Many thanks
garcia

CFSi [1]. Started CAPi [3] 03-07. Currently: Roxi 600mg + Doxyi [17] 200mg . Tinii [27] pulses 1000mg. Sauna QOD. D 8000IU. Niacini [30] 3 x 500mg. Mel 3mg.

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Hunter: Don't think - experiment

Garcia, 

Have you looked at Dr Powell's treatment info?  HERE's [32] a link (#3a) and you can read what he says to do for viral infectionsi [15] which will give you a little more info as well. 

3/08 NACi [11] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [24] 100mg, myco+ CFIDSi [28]/FMSi [18], Hashimoto's, Psoriasis, PA, IBSi [25], Secondary Addison's

When I change what I believe I change what I do

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NACi [11] 2.4g, Zithi [26] 250mg/MWF, minoi [24] 200mg, Tinii [27] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [28]/FMSi [18], Hashimoto's, Psoriasis, PA, IBSi [25], Secondary Addisons

Don't believe everything you think!  

Reenie thanks for the link.  Very open information costs, durations, agents and amounts, pros and cons.   

Louise      US, CFSi [1]. CPni [4] IgGi [29], IgA Positive. Bb Positive Western Blot. Wheldon CAPi [3] 6/24/07. NACi [11], Doxyi [17], 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 [33] endotoxini [34] sypmtoms.

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Louise  CFSi [1], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [35] & Endotoxinsi [36] PRN, Doxyi [17] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

yes, thanks also reenie, very clear. 

"Only treating your EBVi [2] 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 [1] 20 years, intermittent.  Wheldon Protocol - Started NACi [11] and supplementsi [13] Sept 2007. Doxyi [17] and Roxy full dose by Dec '07.  First Flagyli [19] pulse January 2008.

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M.E./CFSi [1] 20 years, intermittent.  Wheldon Protocol - Started NACi [11] and supplementsi [13] Sept 2007. Doxyi [17] and Roxy full dose by Dec '07.  First Flagyli [19] pulse January 2008.

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 [1]. Started CAPi [3] 03-07. Currently: Roxi 600mg + Doxyi [17] 200mg . Tinii [27] pulses 1000mg. Sauna QOD. D 8000IU. Niacini [30] 3 x 500mg. Mel 3mg.

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Hunter: Don't think - experiment

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 [2] 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 [16] and the azole.   

 Louise USA.CFSi [1].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [11],Doxyi [17],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [36]. 

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Louise  CFSi [1], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [35] & Endotoxinsi [36] PRN, Doxyi [17] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

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=... [38]

Your EBVi [2] 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... [39]

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 [2], VZV, and HSV1 6/07. Diagnosed with CPni [4] 5/08. On antibioticsi [16] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [17] bid for Cpn and acyclovir for viruses.

 I would be very interested in the protocol if you can get it! Thank you

Kittykins 

 

 

Switzerland/Belgium ME/CFSi [1]/FM since 1995 Hypothyroid Addisons

Mercury poisoning -(Andy Cutler Protocol)

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Switzerland/Belgium   ME/CFSi [1]/FM since 1995   Hypothyroid   Addisons   

Mercury poisoning -(Andy Cutler Protocol)

i would be interested too.  it seems CPni [4] and EBVi [2] do seem often to go together as concurrent infectionsi [15].  in the UK there is no treatment available for EBV, because it is a virus and you are just told 'to rest' to help recover.

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M.E./CFSi [1] 20 years, intermittent.  Wheldon Protocol - Started NACi [11] and supplementsi [13] Sept 2007. Doxyi [17] and Roxy full dose by Dec '07.  First Flagyli [19] pulse January 2008.