Hi All,
It's taken 3 blood draws due to lab errors and over a month to get the final results. I still think there are some lab tests missing from the original order but I'm not even going to bother to try to find that out now after this slapstick comedy of a lab requisition. It's been insane. In fact, when the ID Dr's office mailed me my results I received an empty envelope so I ended up having to pick them up personally from the office. Of course, the ID Dr believes all of these tests to be "normal." 
Ok, so here are my results. I have a few other tests but since there are so many, I'll stick with the main ones and the ones that show anything out of the norm and that most of us are familiar with here on this site. 
I'm curious if I ought to try to ask for anything in addition to the CAPi, such as an anti-viral drug so please if you have any suggestions or comments, I would be grateful. I do feel better with supplementing L-lysine, which I would suspect is due to the herpes type viral titers being so elevated.
I was also surprised that I show much higher IgGi titers (indicative of past infection, possible reactivated when showing extremely high by some Drs' theories) of C. Trachomatis (1:128) saying it's showing sign of past infection in the lab interpretation while the C. Pneumoniae IgG is 1:64 which Dr Stratton said would be indicative of chronic CPni so yes, I have it but I have lots more "other stuff" too. Oh, the CPn level is considered in range by the lab at 1:64.
These tests were done by Quest Labs as opposed to the first one I had by Lab Corp which showed a lower titer of CPn at the time but I hadn't been on as many supplementsi nor had my Vit D level been as high as it is currently so it might actually be correct. In other words, my immunei system is working better now and so I'm showing more reaction to these chronic infectionsi.
EBVi results (only posting out of range) and interpretation:
EBV Viral Capsid Ag Ab, IFA - VCA IgG, IFA 1:1280
Interpretive Criteria - EBV VCA IgG and IgM are stimulated in virtually all primary EBV infections. VCA - IgM appears immediately after onset of symptoms and usually disappears within 2-3 months. VCA - IgG also appears immediately after onset of symptoms, but persists indefinitely, falling gradually with time unless restimulated as in reactivated infection and chronic disease.
EBV Nuclear Antigen Ab, ACIF - EBNA Ab >=1:640
EBV Early Ag (R+D) IgG, IFA >=1:640
Interpretive Criteria - A transient elevation in titer is seen in 85% of acute EBV infections. Although low titers may appear at a later date due to asymptomatic viral reactivation, elevated levels (1:640 or greater) may be related to symptomatic disease due to chronic or reactivated EBV. Titers are also elevated in Burkitt's lymphoma (EA-R) and nasopharyngeal carcinoma. (EA-D)
On summary page, labs showing out of range are as follows:
M. Pneumoniae Ab IgG 3.60 HCMV IgG, IFA 14.98 H
HHV6 Ab IgG, IFA 1:320 H
Coxsackie B Ab Panel, CF -
Type 1 1:8 H
Type 2 1:16 H
Type 3 1:8 H
Type 5 1:8 H
The tests that were repeated from my early days of diagnosis and disability were some of the viral markers. The EBV looks the same and CMV and HHV6 look like I now have higher titers than I did back then.
Any comments are welcomed. Thanks in advance
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NACi 2400 mg, Zithii 250mg/MWF, minoi 100mg/BID, Tiniii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSii/FMSii, Hashimoto's, Psoriasis, PA, IBSii, Secondary Addisons
When I change what I believe I change what I do
Reenie- To me these viral
Reenie- To me these viral titers all look quite high. Although the standard ID doc's call any IgGi titer "past infection," as Dr. Stratton has said about elevated IgG in Cpni, you shouldn't be having such high levels of IgG unless there is a chronic infection. If the same logic of the immunei system applies to viruses, then elevated IgG titers indicate chronic and ongoing infection and should drop if that's treated.
To my eye, even if these elevated titers are because of immune compromise by Cpn, they warrant treatment with antivirals. Dr. Powell and others have found that it's really tough to go after one thing when other major hits are going on. I think Raven has the best experience with this, as she has had multiple infectious sources, many of them viral. Personally, I think getting these, to my eye, positive results back gives you a good read on some of the important things to focus on along with the Cpn. And, as you said, you may be also getting clearer indicators because your immune system is starting to fight back!
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
You look like you have
You look like you have active infection of HHV-6 and EBVi. See www.hhv-6foundation.org for further info.
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.
Timaca, Thanks for the
Timaca,
Thanks for the great link.
Jim,
Thanks for the comments. Hopefully, Raven will come along and comment as well. From reading Dr Powell's site, I see he suggests Valtrex for 5 months to help treat elevated viral titers.
So, the next step for me is to ask my Dr if he's willing to write me an rx for Valtrex. I suppose there's a standard type dosing for this med for use for long term chronic treatment such as this?
Dr Teitelbaum's interpretation of elevated viral titers as indicative of current or reactivated infectionsi also suggests to use an anti-viral.
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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 doTimaca, thanks for the
Timaca, thanks for the link, it is the first entry to my now not so empty new bookmarks feature.
Louise
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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.
Reenie- He had me on it for
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Reenie~ Your titers for
Reenie~
Your titers for HHV-6 suggest active infection. Valtrex is not effective against HHV-6. You would need valcyte. Do some reading at the HHV-6 website, including the patient's forum. www.hhv-6foundation.org
I had high antibody titers to HHV-6, EBVi and VZV. They dropped to normal with valcyte treatment (9 months).
I am now treating my high antibody titers to Cpni (1:512) with doxyi.
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.
Timaca, What dose were you
Timaca,
What dose were you on? From what I see on that site, I might be able to get my GP to rx Valcyte for me as long as I can tell him what dose to rx it for and I follow up with labs at my endo anyway, or with him if he would prefer but I would need to know what to ask for exactly. That would help. TIA
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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 doTHIS is what I was looking
THIS is what I was looking for for dosing regime for Valcyte on Dr T's website. An email with the link appeared just now! Wow... talk about 'ask and ye shall receive'!
Sidebar 1 gives an explanation and Sidebar 2 gives Montoya's findings and a treatment plan.
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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,I don't know if you
Reenie,
I don't know if you belong to this site, but you may wish to peruse some of the comments there re Valcyte. Dr. M's study has been published and the results were not as favorable as anticipated. I guess it's a personal choice. Also, if my memory serves me correctly, Daisy mentioned on this site (lost my bookmark) that Vanclomir (sp) is just as effective as Valcyte, and not as expensive (????)
I had very high titers for EBVi and HHV-6 when I shutdown in March of 2007. My doc (unfortunately ? -- and I didn't think about it, did not address the virals first). I am really curious to know where my levels are now. I've never known how having EBV or HHV-6 is supposed to make you "feel".
Blessings,
Jeanneroz
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. 3RD pulse 7/7/2008=500 mgTINI:4daysHi Reenie. Glad to see you
Hi Reenie. Glad to see you got it already. Was going to send it to you. It was in my email this AM too & thought of you first thing per your recent tests. Good timing, aye.
I found this section interesting:
A fever over 98.6°F—even 99°F—and/or lung congestion, sinusitis, a history of bad reactions to several different antibioticsi (people misinterpret this "die-off" reaction as being an allergic reaction), scabbing scalp sores or other chronic bacterial infectionsi. People with these symptoms seem to be more likely to have bacterial, mycoplasma, or chlamydia infections that respond to special antibiotics.
Now I am thinking it would be good to get further testing so maybe get a better idea what is going on with me. Maybe clearer idea how to treat and all.
Had wondered why I got those scabbing scalp sores not to mention the bronchial airway irritation while on the MP. Looks like my answer is in that last paragraph.
Hoping you will see Dr. Powell. The viral treatment sounds tricky. Take special care please. MM
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FM dx 2002 (sinusitis-rhinitis, dry eyes, bronchitis, cardiac, shoulder, liver, gallbladder issues) Treatments: Mega supplementsi 2002-04. MPi 2004-08. Started NACi: 4/19 (2400 mg daily 7/21) Supplementsi on start list. Iodoral 12.5 mg. daily: 6/19 & F
Hi Rennie, yes I was tested
Hi Rennie, yes I was tested for EBVi after I came down with fatigue, painful joint swelling and flu-like symptoms(intense muscle pain, headaches, burning eyes and nose). I either picked it up snorkeling with a group of people or from my dentist's office as the test said it was a recent infection. My bad luck. I had mono as a teenager and had trouble recovering from that. The tests showed old infection and recent acute infection. My doctor put me on 5 months of Valtrex. He thought at the time that Valcyte was a little too harsh for me. Later in the year he tested for HHV6 which I have as well. After 6 months I improved, my joint swelling went away and energy came back. Now I take any suppplement I can find that is said to be antiviral.
Here is a list of my current arsenal against the viral henchmen:
Low Dose Naltraxone
Daily FIRi sauna
High dose Iodoral{iodine} (75 mgs) working up to 100mgs
All the CAPi supplementsi
Exercise
Lots of fresh organic fruits and vegetables
Specific antiviral supplementsi: Fucoidan, Cranberry Extract,Green Tea
Hope this helps, Raven
CAP since 8-05 for Cpni and Mycoplasma P. for MS and/or CFSi
After reading the sidebar
After reading the sidebar on this site:
http://tinyurl.com/4uwf7a
I now know why my doctor did not prescribe Valcyte. My white cell counts were very low from the Cpni infection.
Raven
Hi ReenieI hope you are
Hi Reenie
I hope you are feeling better and so glad you have answers now.. I am in the process of being tested for CPNi, Mycoplasma and all the virus's and Lyme Co-infectionsi as I have a positive Western Blot for lyme disease.. I am starting on an intense protocol for lyme and co-infections!
Good Luck!!
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On Lyme Protocol, 1000mg Tetracycline daily and 250mg Zithi MWF. Did MPi for 5 months which made me incredibly ill. Positive IgGi western blot for Lyme disease... was bedridden for a year after birth of my daughter... finally DX'd May 08
Hi ReenieI hope you are
Hi Reenie
I hope you are feeling better and so glad you have answers now.. I am in the process of being tested for CPNi, Mycoplasma and all the virus's and Lyme Co-infectionsi as I have a positive Western Blot for lyme disease.. I am starting on an intense protocol for lyme and co-infections!
Good Luck!!
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On Lyme Protocol, 1000mg Tetracycline daily and 250mg Zithi MWF. Did MPi for 5 months which made me incredibly ill. Positive IgGi western blot for Lyme disease... was bedridden for a year after birth of my daughter... finally DX'd May 08
Actually believe my
Actually believe my comment might have been that Valtrex is very quickly metabolized into acyclovir in the body. Acyclovir is much less expensive than Valtrex. There are marginal advantages to Valtrex and yet the cost difference between Valtrex and acyclovir is quiet stiff. Could be important for those watching costs or who are self paying for meds.
I have never studied Valcyte.
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Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23,
Tetra 7-3,azith, doxyi, minoi, diflucan, mepron, prednisone, NovantroneRaven, Thanks! I take most
Raven,
Thanks! I take most of those supplementsi now including the Iodoral and got my Vit D level back up which I'm sure is of help too.
What dose of Valtrex were you on? I think that med may scare my Dr less. I've made an appt for tomorrow morning and have printed out the Valcyte info from Dr T's site but I would like to offer him an alternative with the dosing if he's not comfy with Valcyte. It does say Valcyte's used for CMV infectionsi and I have that as well so...
Years ago, when I first became disabled, I took Famvir for well over a year thru this same Dr's office and only stopped it because I wanted to see if it made any difference when I stopped the drug. I think it had helped but as we all know, these viruses don't go away, they just go dormant so now would be a good time to take one of these anti-virals again, IMOi.
I don't think they had Valtrex at the time I was on Famvir and certainly not Valcyte.
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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, I was taking two
Reenie~I have not yet
Reenie~
I have not yet started valtrex. But, I believe when I start it will be one gram per day. My friend started at one gram and will work up to 2 grams per day.
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 got my script today for
I got my script today for Valcyte and mailed it away.
I can't even believe how cooperative my GP is being these days! So now the next step is waiting for the mail order pharmacy to approve it and send it to me. I'm planning on following the guidelines listed on Dr Teitelbaum's site HERE, for dosing as well as following the labs as outlined.
My Dr told me to set up the twice weekly, then weekly, then every other week, then monthly labs as recommended on Dr T's site as soon as I get my script in the mail, starting with a baseline lab test.
Of course I'll do that as I appreciate my Dr's cooperation immensely!
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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 ... that is awesome
Reenie ... that is awesome news.
Feel'n so good you have a GP watching your labs so closely. On V. that was the part I was very concerned about.
Go smack 'em dead now. MM
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FM dx 2002 (sinusitis-rhinitis, dry eyes, bronchitis, cardiac, shoulder, liver, gallbladder issues) Treatments: Mega supplementsi 2002-04. MPi 2004-08. Started NACi: 4/19 (2400 mg daily 7/21) Supplementsi on start list. Iodoral 12.5 mg. daily: 6/19 & F