did you take NACi [7] before the test?  from what doc M told me, if you test negative for CPNi [1], then he will place you on NAC for 4 weeks, and then retest you.  

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Mphs, TN. CFSi [3], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [1], myco, EBVi [6], CMV. Capi [8] began in 6/07. NACi [7] 2400mg, doxyi [9] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [10] pulses

Thanks Sharon.  I don't see him for another 2 weeks.  He put me on NACi [7] last visit but I got tested 2 days after that.  I don't think I had started the NAC yet.  I feel like I have the flu so maybe it's the NAC.  Of course, I have felt this way for years.  How are you feeling??

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

While a positive is a positive, a negative is not necessarily negative. Bizarre, but true.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi LynnP, I would stay on the NACi [7] until you see doc again, and then ask him to retest you...or if you are having reaction to NAC (NAC flu), then he may consider that a positive test for CPNi [1], and start the protocol on you. 

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Mphs, TN. CFSi [3], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [1], myco, EBVi [6], CMV. Capi [8] began in 6/07. NACi [7] 2400mg, doxyi [9] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [10] pulses

I started on Doxyi [9] and Cipro last Friday because I felt so bad and have this throat and sinus thing.  When I talked to the nurse yesterday she told me to quit taking them since I tested negative.  Should I be off of antibioticsi [11] for a while before a re test?  Also, isn't it a problem to stop after a few days?  I am so depressed and discouraged.  So tired of feeling horrible.  Thanks for your help.  (How are you doing on the CAPi [8]?)  I felt better after I started the antibiotics but started feeling horrible again after 3 days.  I'm so swollen, in pain, etc.  and burning up.  Do you think Dr. M. would put me on the CAP even if I don't test positive?  He did say he would probably put me on Cortef for adrenals which I'msi [12] sure are low.  He put me on Armour and I felt better for a few days.  I am 54 and started with the chronic sinus at 37!  FMSi [2] at about 42.  I feel like I have the flu but usually feel like that anyway so I don't know if it's the NACi [7] or not.

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

If you are positive for HHV-6 and EBVi [6], then I would pursue further testing on those pathogens.

 See www.hhv-6foundation.org [13]    There is good info there, as well as a patient's forum.

You would need antivirals to get better.

Best,   Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [6], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [11] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [9] bid for Cpn and acyclovir for viruses.

LynnP, Many here are treating emperically based on symptoms.  It is crazy making to try and justify your poor state of health based on lab data.  Even the lab tech can have a bad day and miss something, this is life.

Go back and read the getting started pages and the handbook and see the rational for emperical treatment before you decide what you want to do.  It is your life and you get to make some decisions, that is my perspective for myself. 

I do have documented CPni [1] however if I had come to this forum and read the data I would opted for the treatment positive test or not.  What does anyone have to offer you at this point that looks like a better option.    I was very incapacitated for a number of years,  poor quality of life going down hill steadily.   One year on this CAP and I am returning to function.

No garantees and some have multiple health issues that they are sorting through.  Many of us here are about or above 50 and at that point age is often pointed to as the cause.  For me it was not.

Blessings to you LynnP.

Louise

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Louise  CFSi [3], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [14] & Endotoxinsi [15] PRN, Doxyi [9] 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

Louise, God bless you and Sharon and everyone else on this website.  You are all so kind and encouraging.  I have been one day off of the coxy/cipro and am feeling better.  I felt so horrible on it the last few days.  Does that mean that it's working?  I always thought I felt bad because the yeast started back up again.  I took 2 Diflucan yesterday and feel better today.  Does anyone take the Diflucan, doxyi [9] together?  I've taken metrodazole for 2 weeks at a time before and it seems to clear up my sinuses for a while.  Then the yeast starts up again.  I'm trying to get on this strict diet full force, working my way up to eating that way and I'm getting better at picking the right things to eat.  Plus I couldn't just throw my groceries out and buy all new stuff.  Can't afford it.

Sharon, do you have cpni [1] or did Dr. M. just decide to put you on CAPi [8] or did you ask him to?  Do you have any suggestions or info for when I see him on the 18th?

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

LynnP, from your signature I cannot see how much doxyi [9], how much cipro and how many days you took them.   If you put your personally oriented questions in a blog then we will be able to follow along with your postings.

Doxycycline and Cipro is a potent combination and could produce porphoria and die-off if you are a sensitive sort such as myself.  And from my point of view that could indicate bacterial infection of some variety.  Some of us here feel worse in the beginning not better.

It is hard to feel miserable and despirate to be well.

Have you completely read the getting strarted pages through the tab at the top of the opening webpage and each and every webpage?  

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Louise  CFSi [3], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [14] & Endotoxinsi [15] PRN, Doxyi [9] 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

lynnp, i have cpni [1] and myco.  since you felt worse on antibiotics, i would be suspicious of you having CPN.   I would talk to Doc M.  he will either take your reaction to naci [7] and abxi [11] as you being positive, and keep you on protocol. if he does not go this route, ask him to retest you for CPN after you have been on nac for 4 weeks or so..  either way, i just dont think that .you should ignore the fact that you felt worse on abxi [16]...also, be sure to take probiotics daily

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Mphs, TN. CFSi [3], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [1], myco, EBVi [6], CMV. Capi [8] began in 6/07. NACi [7] 2400mg, doxyi [9] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [10] pulses

I was taking 2 a day of the doxyi [9] - 100mg and 1 a day of the cipro - 500mg (he had prescribed 2 cipro a day but made me too sick).  He started me on NACi [7] and then sent me for blood tests.  I think he really thought I had CPNi [1] with all the years of sickness and symptoms.  NAC 2 a day of 600 mg.

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

Yeah!  I finally figured out how to get my sig. line updated!!!!!!!

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

LynnP, when is your next appointment?  I reacted quickly to my initial doses of antibiotics.

Print out the getting started pages for yourself and read them so that you will be prepared for discussion at your next visit.

We have had several people on this website have strong reactions to Cipro.  It is not the first choice for long term abxi [11] therapy because of some of it's side effects.  For acute infection it can be quite affective.   Those of us who have been ill for a long time have chronic infectionsi [17] so it is not a drug of choice for us.

Hoping that you see your doctor soon and are able to start the protocol slowly so as not to be overwhelmed too quickly.

Louise

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Louise  CFSi [3], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [14] & Endotoxinsi [15] PRN, Doxyi [9] 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

Sharon, lots of people with Cpni [1] feel worse when taking the antibioticsi [11], we often see a die off reaction to metronidazolei [10] in particular as proof of cpn infection, because dying Cpn is toxic to the body.

Lynn P 500mg Cipro is a larger dose of the second antibiotic than we would normally recommend as a starting dose.   I've never taken Cipro so don't know about it, but my second antibiotic is 250mg Azythromicin 3x a week....  Have you thought of maybe halving the dose and seeing if that makes a difference to how you cope with it.

 

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Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [9], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Timaca,

I don't believe that one needs antivirals to get better necessarily.  If you read the research done by Stratton et al, you will see that once you eradicate a chronic infection such as CPni [1], you will put these herpes type viruses "back in the box."  It's my understanding one will NEVER (or almost never) completely get rid of these viruses unless and until your own body gets strong enough to fight them off itself.  

I am planning on trialing Valcyte for my elevated IgGi [21] viral titers but the main treatment I'm using to heal is the CAPi [8].  I think one CAN and WILL get better if treating only the bacterial infection but maybe it might help speed things up or make one feel better in the mean time if the viruses are put to rest for the time being.  

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NACi [7] 2.4g, Zithi [22] 250mg/MWF, minoi [23] 200mg, Tinii [24] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [25]/FMSi [2], Hashimoto's, Psoriasis, PA, IBSi [4], Secondary Addisons

Don't believe everything you think!  

My next appt is the 18th.  I think I will have to a wait about a month before they take another blood test for cpni [1] from what the dr.'s office said.  Have to be off of antibioticsi [11] for a month I think.  I printed out a lot of info to talk to the doc about.  We'll see what he decides to do but I don't think more antibiotics at this point will do any more harm that all the years before.  I've just never taken these antibiotics together plus an anti-fungal at the same time.  I have taken iv's of clindamycin and tobramycin 2 bags 2 x a day for 6 weeks at a time, about 6 times over the years plus all the other antibiotic pills.  We'll see.  Thanks for the info.  I guess I should write a blog instead of writing the long messages???

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FMSi [2]/CFS 1995. tinnitusi [5], ibsi [4], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

LynnP, a blog might work well for you to keep track of your progress.   There is a letter for emperical treatment on the start here page.  For me it worked to know what I wanted in regards to a CAPi [8], the paper work helped me and others to get on the Wheldon CAP even thought I have CFSi [3] not MSi [12].

I hope you are satisfied with you meeting with your doctor.

It is good to understand the principles of the treatment and some about the way the bacteria operate in the body so you can discuss it when you ask for your choice of treatment.  

Let us know how it goes for you.

Blessings,

Louise

Hi LynnP~

I'm responding to your private message here, because there wasn't space to reply to you in the PM system.....the writing space was covered up by the tool bar....

I was on valcyte for 9 months.  It did help tremendously.  I'm Timaca on the HHV-6 patient's forum too, so you can follow my test results and my valcyte journey.

I was not totally well after the valcyte however.  It was discovered that I had high antibody for Cpni [1], so I'm on doxyi [9] for that now.  I did have a significant herx reaction to the doxy, so I know I'm killing off a bacterial pathogen too. 

If indeed you have high antibody titers to HHV-6 (above 1:320) and high antibody titers to EBVi [6], those could be the cause of your problems.  I would go after those first.   The symptoms for Cpn, HHV-6 and EBV are the same.  You can't tell the difference.

 I do know people who had only high antibody titers to the viruses and not to Cpn or other bacterial pathogens.   They have gotten well on valcyte.

 Hope this helps.   sorry I couldn't PM you.

Best,  Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [6], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [11] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [9] bid for Cpn and acyclovir for viruses.

Timaca, re the PM message box.   If you find it has shrunk down, (often happens to me too) you will find a 'grip corner' at the bottom right hand corner of what should be a box, just above the tool bar.   If you click on it with your mouse and pull down it will stretch the message box to any size you want.

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Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [9], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Timaca,

Not to get off topic with LynnP's post, but I guess I am questioning your  statement :

"the symptoms of CPNi [1], HHV-6 and EBVi [6] are the same, you can't tell the difference" 

If you mean they are all stealth that's definitely correct.  Did you have some reference that states you can't tell the difference?  I have all three.... I could never really pinpoint when the HHV6 and EBV were acting up but I definitely knew when the CPN had overtaken me!  Just curious.....

Jeanneroz 

 

 

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JeanneRoz~CPNi [1] diagnosed & started protocol 4/2007, also HHV6, EBVi [6]. CFIDSi [25]/FM diagnosed: 6/07; 100mg/doxyi [9]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [24] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Jeanneroz~   My comment about not being able to tell the difference between a chronic viral infection and a chronic bacterial infection came from discussing the topic with a doctor at Stanford, a doctor at Columbia University Medical Center and my primary care physician.  

 I was originally diagnosed with "probable" lyme at Columbia Univ. Medical Center.  I do think that was a correct diagnosis.  Through some amazing circumstances, I ended up at Stanford were the viral infectionsi [17] were identified.   I went over in great detail with the Stanford doctor what all my symptoms were (some I thought were very specific for lyme).    I was told that a virus can cause the same symptoms.

I then hashed this over with the Columbia doctor and he agreed.  You cannot tell the difference between a viral infection and a bacterial infection by symptoms.    Thus, it is important to do LOTS of lab tests, for all kinds of pathogens.  

Then, when looking over the results of the lab tests, treat what stands out.  If you have high antibody titers to the viruses, treat that.  If to Cpni [1], then treat that.   I wouldn't (IMOi [26]), keep treating lyme for instance, based on a few Western blot bands, while ignoring high antibody titers to Cpn or HHV-6 or EBVi [6].  

I'm running lots of labs tomorrow....about 15 different infectious disease tests, some of those are panels, so we are checking out LOTS of pathogens.   I would encourage you all to do the same. 

Michelle~   Thanks for the heads up on the "grip corner"    That did the trick.   I'm not good with computers, so I appreciate the help!

Best,   Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [6], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [11] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [9] bid for Cpn and acyclovir for viruses.

Timaca, thanks... that helps me understand what you meant.  I hope you will be willing to share your lab results.

 

Jeanneroz

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JeanneRoz~CPNi [1] diagnosed & started protocol 4/2007, also HHV6, EBVi [6]. CFIDSi [25]/FM diagnosed: 6/07; 100mg/doxyi [9]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [24] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Hi Louise,

I never noticed you posted under the name Donna before.  Or is this a blurp in the new system?

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Corinna | GFAi [18]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Jeanneroz~   Many of my lab results can be found on the HHV-6 forum at:

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=di... [27]

Best,    Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [6], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [11] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [9] bid for Cpn and acyclovir for viruses.

Hi Lynn,

FWIWi [28], if your immunei [29] system is in a state of dysfunction due to weakness from infection, you might not show enough reaction to the blood tests to show you are "positive."  

One of the things I opted to do coming from a different protocol where I was depriving my body of D was to take all of the supplementsi [30] and get my immune system functioning better first by adding Vit D as well as the other supplementsi [31] that I was deprived of for the past several years. 

As you can read in Red's postings HERE [32] about D and candida, you'll see it's important to be cautious when introducing or increasing D3 because it aids the immune system and you may get some die off reaction which you didn't get before adding it.  I know I did.  I could definitely feel the change and my labs reflected a stronger antibody reaction too I believe after taking all of the supplements for a few weeks.

I doubt I would have tested positive for CPni [1] before getting my D up because I was in such a weakened state.  Just some food for thought.   

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NACi [7] 2.4g, Zithi [22] 250mg/MWF, minoi [23] 200mg, Tinii [24] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [25]/FMSi [2], Hashimoto's, Psoriasis, PA, IBSi [4], Secondary Addisons

Don't believe everything you think!