Cpnhelp.org

Minai~

Have you ever been tested for viruses?

Your statement about IV antibioticsi causing viral neuropathy....could you explain yourself....what did you mean?

 I'm one that seems to have both viruses and Cpni.  No fun.

Best,  Timac

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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.

Minai, my neuroi insisted on testing me for peripheral neuropathy and when I opined that it was ridiculous because she has no means of curing anything anyhow, she said that peripheral neuropathy can be treated. So is she right and have you been treated? BTW, I just wrote the "sick of being sick" comment to my doctor.

 Nancy 

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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.

 Hi Timaca,

 

Yes. High positive for EBVi, positive for parovirus, but never positive for HHV-6.

 

 

 

What I meant was, anytime I kill off huge amounts of bacteria, the viruses then seem to have free reign to proliferate and take over.

 

Had been hoping that it was only temporary, since that extended Tinii pulse. That killing off the Cpni, mycoplasma, and other bacteria would better enable my immunei system to fight off viral infection.

 

But, apparently, I still have lots of bacteria left to kill. But, the heavy kill of the IV antibioticsi, has once again, given the viruses free reign. Neuropathy related to bacterial kill is not supposed to cause bilateral clonusi and spasticity. Yet, viral neuropathy, can.

  

--Minai  RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

Hi Nancy,

 

Your neuroi is right. Depending on the cause, it can be treated LINK My doc did prescribe a few things, but none have helped. Even Benfotiamine (high dose thiamine) only seemed to make it worse. I guess we all are sick of being sick

 

--Minai  RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

 

Minai- The valtrex is a good idea given the circumstances. When Cpni is lodged in immunei cells and bone marrow, a big bacterial kill will also temporarily drop white count and neutrophils, and this is what brings latent viral infectionsi out since less immune cells are fighting them. The good news is that fresh bone marrow will produce new uninfected immune cells which will function better for you. I imagine that the high dose IV had enough tissue saturation to get more deeply into the bone marrow. In the mean time, the valtrex will make up for what your immune system isn't able to keep up with.

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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

Thanks Minai for your reply, and Jim for your insights.  All I can say is this is one awful combination of diseasesi to be fighting!

I recently started acyclovir (the active ingredient in valtrex).   24 hours later I was sick with a severe headache, the flu (body aches and pains--it hurt to move and walk down stairs), severe joint pain in the elbows, and basically feeling like I could die.   Not fun.   I am not quite that ill now, but definitely not as well as I was prior to starting the acyclovir. 

 Hopefully, Jim, you are right.   By beating back these pathogens, my immunei system might have a chance of holding them in check.   I hope to get my labs drawn tomorrow.  My WBC was below the reference range last time it was drawn...

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.

Hi Minai,

I know that high doses (600mg - 1200mg daily) of alpha lipioc acid has been effective in treating neuropathy.  It is also a potent antioxidanti.  Itr might be worth a try.  There is a form of lipioc acid called R-Lipioc acid that is supposed to be even more bioavailable.  Also I have found that if I avoid all forms of simple sugar (including refined grains, especally gluten grains) my clonusi contractions are much less. 

Tina

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 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

Gosh, Jim, thanks!…I so needed to know that I am on the right track. My white count was down, after the Rocephini, before the Clindamycin. Yet, I was losing so much weight that I wasn’t able to build new bone marrow back up. No wonder the Valtrex already seems to be helping! I’ve been experiencing a definite reduction of the “glove and stocking” effect, which had become quite severe.

 

--Minai  RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephin 3/08. IV Clindamycin 5/08. USA

Thank you, Tina. Will definitely keep the R-Lipioc acid in mind. Same, with avoiding simple sugars and gluten for clonusi. Speaking of supplementsi, my latest is Red Wine extract with Reversatol. Yet, I had not noticed that it also contains Quercitin. Was so glad to read the thread you had started, questioning it. Since it is a CYP3A4 inhibitor, have decided it may be best not to take, being a menstruating female. So, have ordered a new formula that doesn’t contain it.

 

--Minai  RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

I think it is worth mentioning that a first pulse of 5 weeks (if I understand what you wrote correctly) is some assault on your body.   It may take a long while for the resultant collateral damage to repair itself... 

Lying low might be a good idea for quite a long time.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

I couldn't resist having a look in this thread... who amongst us isn't sick of being sick? 

I'm finding myself very confused at the moment. 

I held off on starting Valcyte because I'm scared of worse reactions than I'm already having on the CAPi alone and that going after the bacterial infection would prob do me more good. (someone in another post said one of the Drs that treat viruses even suggested CAP to start with)

I've been on CAP now for about 5 months counting from the time I started all of the supplementsi.  I've done my 2nd Tindamax pulse just this past week (2 days) which I think I'm finally beginning to recover from.  

From what I've read in this thread, it sounds as though it might be better for me to proceed with the anti-viral along with CAP?  My viral titers are extremely high, much higher than the mycoplasma and CPni although I test positive for those too.  

Any suggestions?  I'm sick of being sick too. 

HERE's my latest blog.   I'm including a link there back to this post too.  Thanks for all of your help.

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Minai, Sorry to hear you are still struggling over there. I thought maybe things were better as you have not been posting very much. I am glad you are going after the virus' and hope this brings a positive change for you. Take Care

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

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Oh Minai, So sorry to hear about your latest distress.  May you be up and dancing again soon. I so recall the happy picture of you and your man. 

In some ways this summer has been harder for me than last year.  Last year I as down and on the couch.  This year I expected to get so much of my life needs caught up.  The heat and humidity have held me captive.  I have frazzled and crumped once I start something and up here we have no central air, usually it is only opressive for brief spells.  May the cool dry autumn winds bring us both energy and stamina and improvements.   I for one am happy to see the end of summer this year.

Waiting to hear how the Valtrex works for you.

And Sarah, as usual you have some interesting links that must take note of.  Particularly thoses that promote ATP production and  might boost my off again on again energy levels. Thanks for the link.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

I don't even know where to begin to thank all of you for your well-wishes! I have been far too sick, for the past couple of days, to reply--let alone, read! The Valtrex (500mg/day) seems to be making me more brain-fogged than I have ever been.

 

 

My mother assisted with driving me to, and getting me into the docttor's office, with the transport chair. Can't drive and must use a rollator to walk with, at home. It was only the second time that I've been out of the house in 4 months! Yesterday's bloodwork will be sent to the specialty lab to test for various pathogens. Tomorrow, it's off to the bigger lab for standard testing. 7 different panels have been ordered.

 

 

I had responded to Michèle via PM, letting her know how right that I think that she is about the apparent collateral damage that I am experiencing. I regret having ever deviated from the Wheldon regime, with both the IVs and extended pulse. I don't recommend it, of course.

 

 

 

Reenie, thank you for reading my blog. Yes. We are all sick of being sick, which is the very purpose of this forum. I hope that you will find the answers that you are seeking. As sick as I am, I don' think I'm the one to ask. I will take a look at your blog, too, as I am able.

 

 

Wiggy, Thanks for the well wishes. I do only wish that I haven't been posting as much because I am better, not worse. Time will tell about the viral approach. The labs I'm having done may provide answers, too.

 

Sarah, You are to be commended for getting yours and D W's broadband connections up and running, again. I think that I will give the r-lipoic acid a try. Thank you. I definitely think that the CoQ-10 increase that you recommened is helping with my jaw-pain/osteomyelitis, too. I did not know that it was recommended for such:  LINK

 

Louise, Thank you. I hope to be up and dancing with him soon, too. He just got promoted to higher headquarters, which will require me to attend formal functions. Something that I hope to be able to do. Interesting how you say that othe heat adversely effects you. I seem to have the opposite problem and dread the cold weather that is coming.

 

I do have one suggestion for those taking Valtrex...never, ever take it without food. That was my mistake when I took it last year for Shingle. It made me so nauseous, I had to stop.

 

 

--Minai

 

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

 

 

oh Minai, I am sorry you have been sick & I understand the sick & tired of being sick & tired.  Very sad you deviated from the CAPi too much.

Keep upping those moppers to catch up!  You will be up running around raising hell in no time!!

 

peace

r

 

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