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Help! I'm overwhelmed and discouraged.
By Marcia
Created 03/26/2008 - 5:33pm

Because my WBC count was low on several test, my doc ordered some test.  His nurse phoned this morning with results.  I tested positive for EBVi [1] and CMV.  I won't be seeing him for 2 weeks.  He sent a message that he will call in some Valtrax or Acyclovoir-whichever I want.  How in the h--- do I know what I need?  I'm not a doctor!

I requested that she fax a copy of lab results to me.  I don't really know what these numbers mean but it scares me that they appear to be very high.  I think one of these numbers indicates chronic infection and the other acute.  No wonder I feel awful all the time.

EB Anti-VCA, IGG     >750 U/ml  (High)

Ref.  > 22.0 U/ml....Positive 

EB Virus Nuclear AG,  IgG    >600 U/ml  (High)

Ref. >22.0 U/ml.....Positive 

Cytomegalovirus  IGG Antibody  18.0 Units  (High)

Ref. >l.l units....Positive

Just as I'm getting adjusted to 300 mg./day of NAC and trying to restart the Vandy CAPi [2]!  I don't know what to do.  I've spent hours today reading about these but I haven't found anything to really help me understand these numbers-beyond the obvious.  I guess what I'm asking is what do these numbers mean in terms of my clinical course?

I see that many of us have these bugs and I see where Dr. Powell builds his patients up with vitaminsi [3], etc., then puts them on Valtrex, etc. to reduce the viral load before starting abxi [4].  Is that what I should do?

I feel angry-not sure who or what I'm angry at.  Life, I guess.  I suppose I'm having a pity party.  I took a break from researching at lunch, ate leftover pizza, coke  and cookies instead of water or anyt healthy food.  Who was I striking back at but myself? 

Any ideas anyone?

___________________________________________________________
 FMS/CFSi [5]i [5] 12 yrs., IBSi [6]i [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7]i [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]i [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

Marcia, this is ok..the

Submitted by ruthless1 on Wed, 2008-03-26 17:41.

Marcia, this is ok..the anger thing might be a NACi [8] die off reaction!

Your doc wants you to take an anti viral to get that under control.  In my life, keeping the viruses down to a dull roar is a common thing.  I have taken Valtrex & occasionally I take Famvir now when I am low on acidophillus & L Lysine.

These test results are diagnosis which is where you start fixing things.  If you don't know what is making you ill, what do you treat.  Personally, I don't think this need alter your CAPi [2] journey.  See what others & the doc says.

Now about the pitty party, that is fine, but all that junk food is not good for the body healing.  I am sure you won't do that for an extended period of time.  Small amounts of indulging are allowed!

blessings for your journey

CFIDSi [10]/ME 25yrs, FMSi [11], IBSi [6], EBVi [1], Cpni [7], (insomnia - melatonini [12], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8th Pulse 2 X 375 mg 3day,375 2 d

___________________________________________________________

CFIDSi [10]/ME 32 yrs, FMSi [11], IBSi [6], EBVi [1], CMV, Cpni [7], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [13] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [14]/day-3 days

»

Marcia,  My husband Steve

Submitted by cypriane on Wed, 2008-03-26 18:05.

Marcia,  My husband Steve has those bugs too.  He has taken both Valtrex and Acyclovir---the Valtrex is definitely the better choice starting out, 500mg twice a day (or more).  The Acyclovir might be good for a change several months down the road.  Don't panic; it's better to know who your enemies are.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [15]).  CAPi [2] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [1], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

___________________________________________________________

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [15]).  CAPi [2] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [1], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

»

Marcia, my CMV was 18.2

Submitted by sharon on Wed, 2008-03-26 19:18.

Marcia, my CMV was 18.2 (greater than 1.1 is positive), and EBVi [1] 216 (greater than  22 is positive)....doc did not offer me anything..he is never consistent ...anyway, i did a post about this a few weeks back..what i decided to do for now is take l lysine 1000mg twice a day, and fucoidan 300mg twice a day. they both have anti-viral functions. i was going to take these for couple of months to see how i felt. then maybe ask for valtrex. 

if you take the valtrex, please let me know if you can tell a difference. if you do, i'll see if he will give me a script for Valtrex. 

by the way, today, i called and cancelled my 3:00 appt with on for Friday. you maybe able to call amanda and see if the spot is still open.   

 Mphs, TN. CFSi [5], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [7], myco, EBV, CMV. NACi [8] 4000mg, doxyi [9] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [14], tinii [17]<

___________________________________________________________

Mphs, TN. CFSi [5], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [7], myco, EBVi [1], CMV. Capi [2] began in 6/07. NACi [8] 2400mg, doxyi [9] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [14] pulses

»

Marcia - Not to be [18]

Submitted by Daisy on Wed, 2008-03-26 20:22.

Marcia -

Not to be discouraged - getting viral triggers under control can make lots of things go better.  Good for your doctor for checking for these and for prescribing antiviral.  This could well make the antibiotic portion of your treatment go easier - it's possible :)

Re acyclovir and Valtrex - doctor probably asked because of cost - acyclovir is generic and less expensive and Valtrex not generic and more expensive.

All fluff aside on Valtrex and acyclovir  difference- Valtrex is very quickly metabolized in gut into acyclovir.  Most pharm D's will tell you to save your money and go with the acyclovir as almost as soon as you swallow Valtrex it becomes acyclovir. 

If the acyclovir doesn't do the trick you can always pay for the more expensive Valtrex.

Either way - you win !

Daisy - Husband on CAPi [2] 5/07.  Minoi [19], Roxyi [20], Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi [9], Azithromycin, Flagyli [14]

___________________________________________________________

Daisy - Husband on CAPi [2] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

»

 I'm with Daisy on this:

Submitted by Jim K on Wed, 2008-03-26 20:47.

 I'm with Daisy on this: good that your doc thought to test this, as any load on your immunei [21] system, viral or bacterial, just makes it harder. You don't have to stop the CAPi [2], although you might want to give it a little time on the antiviral as you might get some die-off from viral kill. I'd go with the rx for a couple months with such high readings rather than start with herbal methods first, but that's a personal preference. Honestly, you'll feel better from getting the viral load down and freeing energy for dealing with the CPni [7]. It's not unusual for viral loads to increase at first on the CAP, as infected immune cells die off, temporarily suppressing immune response. As new uninfected immune cells get produced the CAP will help with the viral control.

CAP for Cpn 11/04. Dx: 25yrs CFSi [5] & FMSi [11]. Protocol: 200mg Doxyi [9], 250mg MWF Azith, Tinii [17] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

___________________________________________________________

 

CAPi [2] for Cpni [7] 11/04. Dx: 25yrs CFSi [5] & FMSi [11]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [17] 1000mg/day pulses; Vit D2000 units, T4 & T3

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Marcia, I'm not on a CAPi [22]

Submitted by Reenie on Wed, 2008-03-26 21:03.

Marcia,

I'm not on a CAPi [2] at the moment but I've had tests for many of the herpes viruses in the past as well and I recently began to take L-lysine (1000 mg 2/day) once again as a natural remedy for the sxs I get in the form of nerve pain much like shingles.  It does help me feel better.

Dr Teitelbaum routinely uses lysine (1000 mg/3x/day) and also it's suggested to lower intake of nuts due to arginine content.  It helps your own immunei [21] system deal a little better with the herpes viruses and like Jim states w/o the added die off from your CAP. 

Was on the MPi [23] for 3 1/2 yrs. Taking NACi [8], getting CPni [7] tested, looking for answers, I (still) want my life back! CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [6]

The more I learn, the less I know!

___________________________________________________________

NACi [8] 2.4g, Zithi [24] 250mg/MWF, minoi [19] 200mg, Tinii [17] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [10]/FMSi [11], Hashimoto's, Psoriasis, PA, IBSi [6], Sec Addisons

Don't believe everything you think!  

»

Sharon, Thanks for the [25]

Submitted by Marcia on Wed, 2008-03-26 21:26.

Sharon,

Thanks for the info.  Your numbers give me a better frame of reference.  Our doc is not consistent fm. pt to pt, nor fm visit to visit with the same pt.  I don't see "rhyme nor reason" sometimes.  

I think I will take Valtrex (or generic Acyclovoir) until the viral load goes down.  I will make a note of the Lysine and fucoidan as alternatives for later.  I'll let you know if it seems to help me feel better.

Wouldn't you know it?   I have an appt. with my PCP at 2:00 Friday.  I would like to see him before I leave town on Sat. Thanks

 

 

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAPi [2] since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

Daisy, Thanks.  I really [26]

Submitted by Marcia on Wed, 2008-03-26 21:52.

Daisy,

Thanks.  I really was not sure of the difference in the 2 drugs.  I'm all for taking the less expensive if all else is equal.

 

 

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAPi [2] since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

Joyce, You are right.  I [27]

Submitted by Marcia on Wed, 2008-03-26 22:05.

Joyce,

You are right.  I should not have panicked (which I did).  And, it is better to know your enemies.  I'm easily overwhelmed these days. I normally say, "Knowledge is Power" but my first response today was just feeling like I couldn't fight another battle. Thanks.  

  

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAPi [2] since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

Ruth, You are right of [28]

Submitted by Marcia on Wed, 2008-03-26 22:17.

Ruth,

You are right of course.  Reading your response today helped me calm down.  Thank you. 

And after reading your and the other responses,  I realize that I probably don't have to delay the CAPi [2].  I am easily overwhelmed these days.  Thanks again.

 

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAP since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

You are right, of course,

Submitted by Marcia on Wed, 2008-03-26 22:43.

You are right, of course, Jim.  I don't need anything making it harder for my immunei [21] system.  I will go with the Rx for now-herbal later.  The only treatment specifics relating to CAP I could find were about Dr. Powell's approach.  That made me think I might have to delay weeks or months. I was frustrated.

Your explanation re viral load increase helps me understand how one effects the other.  Earlier today I wasn't ready to accept that I had another enemy to fight, let alone figure out how to fight it. 

All in all, ya'll helped me see that its probably not as bad as I thought it was.  I am so thankful for this website.

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAP since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

Thank you Reenie for the

Submitted by Marcia on Wed, 2008-03-26 22:51.

Thank you Reenie for the encouragement.  It looks like you and I have a lot of the same problems.  I too want my life back.  Maybe we can help each other do just that.  God bless you.

 

FMSi [11]/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On CAPi [2] since 10-1-07, Currently on NACi [8] only, From Memphis-USA

___________________________________________________________
 FMS/CFSi [5] 12 yrs., IBSi [6], Hypothryoid, EBVi [1], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [7], On and off CAP since 10-1-07, Currently on NACi [8] & Delta Fr. E Doxyi [9]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

»

Marcia, it sounds like

Submitted by sharon on Fri, 2008-03-28 07:31.

Marcia, it sounds like you've got yourself a good plan...I know that it was difficult finding out about the and CMV and EBVi [1]...Try to relax and have a great vacation. you deserve it (and need it).. 

Mphs, TN. CFSi [5], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [7], myco, EBV, CMV. NACi [8] 4000mg, doxyi [9] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [14], tinii [17]<

___________________________________________________________

Mphs, TN. CFSi [5], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [7], myco, EBVi [1], CMV. Capi [2] began in 6/07. NACi [8] 2400mg, doxyi [9] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [14] pulses

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