MediTest
Submitted by Reenie on Sun, 2009-01-04 17:33

Tuesday, 3/10/09 - 

There hasn't really been much to report lately.  Psoriasis takes months to settle down after a flare and so that continues.  My energy and mood has improved some.  I'm having alot of personal issues lately so I'm not sure how much is reaction to that vs the Valcyte. 

Tomorrow I'll be getting my next blood draw and will have viral and bacterial titers retested.  It's been 10 months since they were last tested.   

At the moment, I'm planning on trying to live my life a little while the weather is nice so I'm going to hold off on changing anything until it gets too hot out to ride.  I'm thinking I may be able to ride again for a few weeks in the interim but that feeling changes daily.  I think some of that feeling may be due to the reactions of the meds I'm taking but the only way of knowing that for sure would be to stop them or wait and see what happens further down the road.    

AZ Bike Week is back soon so hopefully I'll be able to get out some. I've missed so many of these now due to treating this illness, more so than just being sick.  The treatments make things so much worse so oftentimes. 

I never realized how much this illness affected my thoughts and feelings.  Maybe that's a good sign, that the Valcyte is reaching the brain? Undecided

Friday, 2/27/09 -

All labs are normal except for RDW which is just out of range at 15.1% normal being up to 15%

My Dr's office is now extending my blood draws out to two weeks and I'm remaining on the 1/day dosing.

Psoriatic lesions are settling down now again. This seems to fit for me with levels of inflammatory response I typically have whenever I do anything that seems to cause more die off.

Hopefully, this will be a thing of the past someday.

Today I have a slight headache. I've been having a little bit of of sleep interruption lately, due to warmer temperatures and construction near my home.

My spirit feels a little happier/brighter and I think I'm slowly beginning to turn the corner now. It's hard to tell but the spring weather we're experiencing helps too and I'll begin to sunbathe some soon, which always seems to help boost my immune function.

Thursday, 2/19/09 - 

I just got a call with my lab results from my Dr's office.  My WBC (5000) is back up to almost the starting numbers, but I feel horrible, so maybe the "new" wbcs are actually doing their job now?

Liver and kidney functions are normal too.   

RDW is just within normal on the high end at 15%.  Hemoglobin and Hematocrit are a little on the high side of normal, which I believe can be indicative of secondary porphyria, something I read HERE:    

Another indicator, according to Dr. Stratton, is high hemoglobin and high hematocrit.

So the plan for now is to continue on Valcyte 1/day and retest next week to be sure things stay normal.   Now if only I felt normal.  Frown

Something I found online was that if kidney function is below 60, (my GFR was 59) adjusted dose of Valcyte is 1/day vs 2/day so I guess this is exactly what Roche suggests. Page 24, Table 13

http://www.rocheusa.com/products/valcyte/pi.pdf

Tuesday, 2/17/09 -

Today marks one week on the lowered 1/day Valcyte dose. I've noticed I feel more "herxy" if you can call it that. I've had more bouts of crankiness and definitely more fatigue lately. I could blame it on other things but it's weird to have it coincide with a DECREASE of Valcyte, so who knows.

Psoriasis on scalp has worsened and so have my leg and arm lesions which is another sign of increase of inflammatory response for me.

Tomorrow I'll be having my labs drawn and if my WBC is still low, my Dr will be asking me to go off this medication unless I can explain to him why it's safe to continue on.

Right now I'm about so fed up with being sick and tired I really don't care. I'm thinking of just doing CAP and even might give that up since who knows what might come out of that anyway.

As you can tell, my attitude is not good right now and I've been like this for at least 24 hrs.

Thanks all for reading this.

I saw that Kristin Loomis (ksloomis) of the HHV6 Foundation answered a question in the Montoya study link on the HHV6 board but doesn't seem to post much.

It would be great if there was more professional feedback on these boards by people like her or Montoya himself since that is their board. That has been my experience when there's not a lot of activity or a board is new; it's usually monitored more by the staff who oversees it.

I feel like those of us on that site posting and choosing to use antiviral treatments are left twisting in the wind, unlike the support on this and other boards for experimental treatments.  

Wednesday, 2/11/09 - 

My Dr's office called and agreed to lowering Valcyte to 1 pill/day for 1 week and retest.  If the WBC is still below normal he said he wants me to stop the drug completely because he feels it's not safe for me to continue.  I'd have to say I agree with him without more information available.    

Tuesday, 2/10/09 -

This week's labs came back and while my WBC has improved some, it's still just below normal and now my RDW is slightly elevated.

The neutrophils have come up from 1800 to 2100, Lymphs dropped from 1200 to 1100, monocytes came up from 100 to 200, eos dropped from 100 to 0 and baso continues at 0. These values are all within the normal ranges but my WBC is still below the bottom normal number of 4000. (WBC went from 3300 to 3500)

I hope I'm translating all of these numbers so they are understandable since they are all measured with decimals and x10E3/uL :-/

All other values are within normal range for kidney and liver function and CBC values.

I'm not sure exactly what to do and my Dr is concerned as he's not familiar with this drug.  I'm wondering if it would be advisable to lower the dose to 1/day (I'm on 2/day) or stop it all together.  

This is what someone posted as an explanation on the HHV6 board as to the action of the drug.  If anyone has any additional comments, I would appreciate it in deciding what to do.  Thanks.  Smile

i'm a biologist so i'm going to use some technical terms, but try to explain the process. here is how valcyte works:
valcyte is a chemical which looks almost exactly like a nucleotide (A, T, G, C - the nitrogenous bases that make up DNA). the chemical that synthesizes DNA (DNA polymerase) slides along a DNA strand and pulls these bases, which are floating around in the nucleus, together according to the sequence it reads from the existing strand as it slides along, making a complimentary strand (A matches T, G matches C). When DNA polymerase reads a T and goes to pull an A out of the solution to connect it to the end of the growing strand, it grabs a valcyte molecule because valcyte looks almost exactly like A. When valcyte is added into the sequence it stops the growing strand because it lacks the sugar component (the part which creates the backbone of the strand), so the strand is literally broken and DNA polymerase falls off the strand at the bend. This means the DNA sequence is not copied and the virus cannot replicate.

The clincher is *theoretically* only VIRAL DNA polymerase will be unselective enough to pick up valcyte and use it. *Theoretically* our own cells' DNA polymerase is picky and won't incorporate valcyte into a sequence when it is replicating our own cells. But this is not known for sure. This is why valcyte is considered a potential carcinogen - it can mess up your DNA. In places like your bone marrow where cells are dividing at a high rate, this could reduce the rate of cell production - thus a drop in WBCs.

Tuesday, 2/3/09 -

I just got a message from my Dr's office on the phone since I didn't get to it in time and I have to call back tomorrow.

They said my white blood count has dropped below normal at 3.3 (4.0 - 10.5)  My WBC started out at 5.4 before Valcyte and has slowly been declining.  Does anyone have any ideas on this?  

I find it odd that I'm actually beginning to feel better with less neuropathy now.  Could this be that infected cells were being killed off faster than I'm making new ones? 

I'll need to pick up the lab results to see what else has changed but this was the Dr's office concern.  I'll post on the HHV6 board too but this is a much more active (and I think, knowledgeable) board.    

Monday, 2/2/09 - One Month Update

My labs from last week are still about the same.  Nothing much has changed although there are some subtleties.  Monocytes are still at 2% (low) and GFR is still just below normal at 59.  

Everything else is still within range.  

I feel like I might be having a little more energy and less neuropathy so I think I might have turned the corner.  Hopefully, this is the case and I'll continue to feel better this week. 

I've had more IBS issues intermittently, which for me is typically a (good) sign of increase in endotoxins, so it's my opinion that either the Valcyte is doing some of the work, or allowing CAP to work better due to its use, or maybe it's just a different sort of die off (viral shedding) due to Valcyte itself. 

Tuesday, 1/27/09 -

As of yesterday I dropped my Valcyte dosage to 450 mg BID and I'm only having labs done 1/week now. When I got my labs back from last Thurs, my kidney functions (BUN, creatinine) were high normal and GFR was just out of range, low.

The monocytes are still low and lymph has come down a bit, in normal range.

I had a difficult time staying asleep last night, waking several times. It might have been due to having a hectic weekend and not enough sleep.

I still have intermittent, occasional headaches. I had a headache Sunday night which caused my head to hurt when I put it on my pillow. I was so tired and couldn't fall asleep until the ibuprofen I took kicked in.

My worst symptom is the neuro pain in my arms and hands which has also migrated somewhat to my feet. It's not constant but it gets unbearable at times. Mainly I ride it out and it gets better.

I feel my energy level is about the same as it's been, which is not real great but I can force myself to do what is needed. I don't feel bed or housebound but I have no desire to do anything unless I have to, which is not much fun. There might be a little depression (from the Valcyte) too since I usually have a better attitude. Everything feels like a hassle to get done.

Friday, 1/23/09 -

I went yesterday for my blood draw and received my results from Monday.  The labs were all about the same with below normal range monocytes, still at 2%   Lymphs have come up but are still within normal range, from 26% to 38%  (14-46%)

I'm finding myself to have more fatigue and lethargy taking a 1 1/2 hr nap yesterday.  I've been waking up more at night and sweating.  

Last night I had more neuro pain, mainly in my arms and hands.  It lingers today.  

Monday, 1/19/09 -

Today is the start of the 3rd and final week of the double dosing of ValcyteI got my labs back this morning from last week when I went in for my blood draw this morning.  Something appears to be happening which I believe shows that the Valcyte is doing its job...   

Monocytes have dropped from 8% to 5% to 2% as of last Thurs.  (4-13%)
WBC dropped some and then rose again, all within normal ranges during this time.

Creatinine climbed up out of normal range while GFR dropped below normal on Mon but both are back in normal range again as of Thurs.  I don't recall ever seeing this sort of kidney function happen to me before so something is definitely happening. 

Liver functions are normal. I'm thinking the supplements from CAP may be helping me not feel so badly so I'm hoping I'll still see some improvement from the Valcyte down the road.   

Dr Teitelbaum says, In our experience, those treated with the "SHINE protocol" in addition to the Valcyte often do not get the initial worsening of symptoms. It may take 4 months to start seeing the benefit.

Friday, 1/16/09 - 

Well, it's almost been two weeks now on Valcyte.  I can't say anything horrible is happening to me, which is good.  I feel about the same as I did earlier this week although I had a headache last month.  

My Dr's office did another lab draw yesterday and handed me what I thought was my labs from Monday but they were just a repeat of what I had been given last Thursday.  I didn't realize they gave me the wrong labs until I took it home and compared it to the same tests!   Yell

The weather has turned which is typical for us this time of year so I've been trying to expose myself to a little more sunshine and I think I feel better because of it.  I plan to stay on my current dosage of D until after I get my next test drawn as I'm shooting for a year round number of 60.  

I'm not sure I want to refrain from pulsing too long although I don't want to get slammed by both the Valcyte and Tindamax.  Does anyone have any suggestions that have used antivirals along with CAP?  I skipped my January pulse so far although my pulses were pretty tolerable before the Valcyte.  Maybe I ought to do another one when my dose of Valcyte gets cut in half at the end of the third week?

 

Monday, 1/12/09 - 

The headaches have subsided but the waxing and waning of the arm and elbow aches continue. I'm not used to this type and area of pain so it's bothersome.  

I'm still having vivid dreams although not quite as intense as last week.  

I got my first blood test back today from last Thurs and all was normal.  

I may try taking cholestyramine (usually only take it for tini pulses) in addition to nightly charcoal since I'm getting some IBS sxs which I believe are usually related to secondary porphyria.

Thursday, 1/8/09 -  

I had my first blood test today. 

I've had two episodes of headaches this week which is definitely not typical.  I rarely get a headache.  I have had some weird dream episodes too, but nothing I can't bear.

My forearms and elbows have been very achy which I think is also from the Valcyte although it could be typical FMS and I feel a bit more fatigued and lethargic lately.  

So far, so good. Smile

Sunday, 1/4/09 -

Tomorrow I'm starting Valcyte for CFIDS and my high viral titers along with CAP.  I'll try to keep this blog dedicated to my experiences to Valcyte with periodic updates.  

Positive viral titers tested 5/20/08 are: 

EBV Viral Capsid, IFA IgG – 1:1280 (<1:10)

EBV Nuclear Antigen Ab, ACIF - >=1:640 (<1:10)
EBV Early Ag (R+D) IgG, IFA - >=1:640 (<1:10)

CMV IgG, IFA – 14.98 H (<0.80)

HHV6 Ab IgG, IFA – 1:320 H (<1:10)

Coxsackie B viruses – aka enteroviruses – positive for types 1,2,3 & 5

Since the jury's still out on which to treat, I'm going to try treating both bacterial and viral simultaneously. Here are a few links to the experts using viral treatments; some with antibiotics and some don't.  Since my titers are high on several of them, IMO, Valcyte warrants a trial.  

Reasons to suspect viruses in CFS

Treating Hidden Viral Infections by Dr Teitelbaum

Could Valganciclovir Be An Effective Treatment for Chronic Fatigue Syndrome?

After reading this link, I learned that HHV6 is known to cause roseola.  I had this as an adult about 10 yrs prior to becoming disabled.  I never knew.  You can learn all sorts of interesting tidbits online. 

I have been on CAP since 5/08 and feel the biggest changes for me were from the supplements I started 2 months prior in 3/08. 

I had an intense reaction to my 2nd tini pulse of only 2 days; strong enough to make me think I may not be able to tolerate CAP, but since then I've been able to tolerate full CAP and 5 day pulses.  I did add cholestyramine on pulses so that may be making the difference for me. 

I haven't noticed any significant changes since I started CAP really although it may not be long enough.  I'm hoping treating the viruses might give me some more improvement.  

I have decreased Iodoral to 12.5 mg/day, have reintroduced charcoal at night and continue using all of the supplements listed HERE, and then some. I hope to eventually reduce supplements to  Recommended Supplements only but I think I have awhile to go on that.

I will be following the guidelines for dosing as listed on Dr T's link above along with recommended blood testing follow up for any liver/WBC issues that could arise.  

Thanks for reading my blog.  Smile

PS I can't figure out why my sig line font changed on this blog.  Sorry.

Sending good thoughts, Reenie. Good luck!

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

Mac,

Thanks!  I always get so nervous before any new endeavor (ie: drug) I begin.  I wish this was all easier for us but it's not, so I trudge along, preparing for the worst, hoping for the best.Image removed.

Maybe the Valcyte can put some of these viruses back in the box for me so that I might get more improvement from CAP down the road.  Who knows... maybe I don't really need to do this, but I suppose my reactions will give me some idea.  I'll be asking for a retest of titers in the springtime as well.     

I'm hoping the toxin moppers will make the Valcyte easier to cope with and that I get lots and lots of die off or viral shedding as I believe it's called.  (but without alot of misery Image removed.)

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

I think I had some real improvements after I started taking the Valcyte, and maybe it was just coincidence but it really seemed to me that I just felt healthier once I started taking it.  I've just had a really rough week though, so my doctor has asked me to take a break from it for awhile. 

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

The Valcyte can be rough, or so I hear. I also have high IgG levels of HHV6. Dr. Powell has me on the vitamin D and some others. He is having my IgG of HHV6 retested to see if the D will lower it. Whenever I relapse I get elevated EBV and HHV6. I also have high levels for cpn and mycoplasmal pneumonia. Obviously valcyte isn't going to help these bacteria.

 My personal opinion, for what it is worth, is that this mix of infections is reactivated because something is suppressing normal immune function. Will the vitamin D, E and A help? I hope so. I'll post more in a couple of weeks after my lab results come back.

Paula

Paula Carnes

KellyAna,

I don't see Valcyte in your sig line.  Do you still take Valcyte regularly along with CAP?  How long have you been on CAP?  How long have you been on Valcyte and are you using the doses used from the Montoya study? (higher dose for first 3 wks)  I would definitely like to hear more and I think others might be curious too about your using it with CAP. 

After all, we are all learning in this together.

The only other person I know of on this site that is doing both abx and antiviral is taking only doxy and the active ingredient in Valtrex (Timaca) but had taken Valcyte and had some good results from it.  

From reading Jim K's blog, he took an antiviral (not Valcyte) for awhile but that was awhile ago if I recall.  

Signed,
Fellow Guinea Hen Image removed.

Paula, 

I'd be curious to know what your titers are and what Dr Powell thinks about them as he says in his site he sometimes uses antivirals and/or antibiotics but not always.  I believe he goes by each individual and their symptoms and lab tests.  

What is your D level up to now?  Did you read THIS paper posted by Red?  It gives some good numbers for dosage and target 25D levels.  My endocrinologist has me tested every few months and I'm adjusting my dosages to keep my levels up thru the winter months.  

As for Valcyte, I think rough might be a good thing.  Heck, we all know what die off and secondary porphyria feel like so as long as my labs don't get too out of whack, I'm hoping the rough part will mean progress and improvement.  

From what I've read, oftentimes people don't see improvement until months after they stop treatment.  This might be similar to what happens when people (like Sarah) continue to improve on intermittent CAP and even afterwards.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie, sorry for the very, very late response.  I've been on CAP since June '07.  My doctor had added Valcyte I think sometime last summer, to take along with the CAP - the dosage was 450mg.   I see yours is 12.5 mg surely there shouldn't be that big of a difference Image removed.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

KellyAna,

Actually, my Valcyte dose is 900 mg 2/day for 3 weeks and then I go down to 450 mg 2/day for the next 6-9 months like the Montoya study and Teitelbaum use.  The iodine is 12.5 mg/day.   

Do you have any problems with pulsing?  Did you stop pulsing for awhile when adding Valcyte?  How long will you remain on Valcyte? 

Thanks for answering my questions!  Image removed. 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

All my best thoughts and prayers are being said for you. I really want & hope this to work for you Reenie. I read your links and find them very interesting. Wow! That Valcyte costs some big bucks ... but so worth it if it works for you. Hope your insurance kicked in.

I took transfer factor for HHV-6 for several months long ago before MP days. My gosh did it give me the worst kind of pain with a splitting headache that immobilized me. I had to give it up. I didn't realize it infected the brain. Fascinating stuff.

Will be thinking of you "guinea hen". Image removed. Keep us posted how it goes.

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hi MM,

I see that it says on the bottle to take it with food so I'm getting ready to down my first two pills shortly, with breakfast!  Image removed.  

MM, if it wasn't for a really good rx plan I have, there's no way I would have considered trying it, and of course all of the lab draws (2x/wk first 3 wks) to be sure of no toxicity or anemia.  They are covered (or should be) too by my insurance.   Heck, even with the co-pay on the rx it's not cheap for me.

I will report back and I'll be keeping a journal so I can post on the HHV6 boards as well.  I was hoping to find alot more info like there is on this site, but there just isn't much.  I found THIS article from a UK online paper as well.  

Oh, and one thing I do find has helped me in the past is using L-lysine, which helps slow down the replication of herpes type viruses enough so your body can fight them off.  I always feel a little better when I take it so I'm thinking/hoping the viruses are an issue for me.  

 I guess being a guinea hen is definitely what it is... 

 Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie, I am also hoping you do well with Valcyte and will be following your posts.  Happy trails (trials?) 

Be well!

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thank you, kind and thoughtful ladies.  I'm very grateful we're at liberty to share our experiences on this site.  We all benefit from reading and learning what others are doing.  Isn't that what a community like this is for?  Well, at least this one is!  Image removed.

I've taken 3 doses of Valcyte so far and nothing really to report yet.  I'm a little more sore in my arms and shoulders today but I had a busy day yesterday so that might have something to do with it.  

I did have a really vivid dream that caused a little anxiety but once I got up and moving around it was gone.  

I still haven't been able to figure out what changes the font or colors on these posts. Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Timaca,

Thanks.  BTW, do you know any active boards for Valcyte patients?  The only two I know of (prohealth and HHV6 foundation) barely have any participation... not very helpful once you read thru the threads.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hi Reenie~   those are the only two boards I know of.  If you try posting on the PRohealth board, someone there may direct you to another site.   Like Cpn, there are few people trying these routes to wellness, so the posters are small in number.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Timaca,

Thanks.  It's alright.  I just thought maybe I missed a board somewhere but there aren't many people using these treatments and even less of them posting.  

I'm feeling really great tonight.  I hope this doesn't mean the Valcyte's not going to work.  OTOH, maybe I'll just continue to improve...nothing wrong with wishful thinking, right?  Image removed.

Maybe it was my great chiropractor.  He's excellent and spent a little extra time working on my knee today.   

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie,

I'm pulling for you too!  The viral die-off phase can be a whopper, so be prepared for full time rest if your body needs it (plenty of sleep, naps, reclining on the sofa).

For me, the 9months of Valcyte was the only med that would make the initial difference in my illness.  My most disabling symptom was cognitive functioning: I started at 30-40%, dipped to 10% during initial die-off; at 5 months i started to feel as though i was coming out of a coma and slowly improved. By month 9 i was ready to stop the med - it is tough, and improvements continue after completion. I'm now holding at 85% cog functioning!  For the month between Valcyte and Valtrex i felt great, but my EBV and debilatating fatigue needed to be addressed, thus it's now Valtrex.  Other major symptoms, for me, were insomnia and anxiety.  

Most patients note an increase in symptomology and headaches are common.  The HHV6 board has plenty of patient reactions/responses if you read through all the threads, and read ones for other diseases.   

 With only, at most, a few hundred patients having taken/taking Valcyte there are few of us to post results.  Also, many of the initial patients were or continue to be very very  ill, thus posting was/is difficult.  However, one HHV6 board poster treated her ME early on (only a few years ill) and had tremendous results with 6months of Valcyte - she's back in school and feels healed.  

I hope these comments are helpful and wish you well. 

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

VF,

Yes, thanks, your comments are helpful and encouraging.  How long after you began Valcyte did you feel horrible?  So far, I'm doing pretty fine.  Nothing remarkable except the few comments I made.  

I can say I think reducing Iodoral and increasing T3 and T4 thyroid hormones is picking up some of the slack for me and I prob would be feeling better at the moment without the Valcyte but it's not bad... yet. Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

From what i recollect, by week 4 i slept most of the day, by the second month i could walk no more than one block and had a caretaker drive me to appointments/grocery/etc. Other patients i spoke to had far less viral die off and some had other complications. 

My bi-weekly blood tests (for the first month) and monthly blood tests (thereafter) were all fine - for monitoring liver & kidney function and basic white cell stuff - yet i could barely move. 

 As i mentioned, i was in rough shape prior to starting, and, every person responds differently.  THE MOST important thing is to rest!!!!  Let your body do the healing and DO NOT push yourself; it's difficult since we all wig out a bit from the viral die off - it plays havoc with the brain, and we desperately want to 'get' better.  Also, it's best to stay on the medication for the entire 6 months than to go off of it due to pushing yourself or getting 'energy' from supplements and/or meds. Those words of caution are directly from Dr. Montoya and he's seen a majority of the Valcyte patients. As you may have read from the immunesupport board, it takes 1 year from completing Valcyte for patients to feel recovered; the immune system and other cellular activities start to reset.  

Wishing you a smooth journey and plenty of rest.Image removed.

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

First I need to say that I have not looked at these Viral treatment medications but would ask if I were serious about using them at this point, which I am not as my labs for virus HHV-6 was negative and other viruses Negative.  

If these drugs can inhibit viruses, is it at all possible that they also can  have a bateriocidal effect on pathogenic bacteria in the body that could lead to massive die-off and potential porphyrin accumulations as your syptomatology lines up quite nicely as such as I experienced during early days on CAP!?

There may even be a massive synergistic effect if they are used with early CAP treatment.   With CAP treatment personal overload from treatment is very individual.  Some could do these viral specific and bacterial specific tx and be quite OK other well overwhelm is the best choice of word that I can think of just now.

We are out here on the fray and responses are individual within a certain broad spectrum of what some people experience.

Best wishes to you ViralFree.   May you be bacteriafree, as well.  Louise

 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

VF,

Ok, that's very helpful, thanks.  I was wondering if/when I would have stronger reactions and when I would see that.  Dr Teitelbaum says anywhere from after the first two weeks people that will react to the Valcyte treatment will typically become housebound for a couple of weeks and then will see some improvement.  That sounds similar to what happened to you but maybe a little more intense than Dr T describes.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hi Reenie!  No, I did not stop any of the protocol at all when I started taking Valcyte, and I continued with pulsing.  CAP - especially pulsing, made me feel like an old piece of gum that I was constantly scraping off the floor!  (I read something like that on a post in here somewhere LOL!  It's very fitting.)  So my doctor has had me stop the Valcyte, for now anyway.  He had me continue with CAP, but he has lowered my metronidizole presription from 500 to 375 mg.  (I'll be fixing my signature as soon as I can re-figure out how to do that!)  I'm slowly coming around to being at least a little more than just barely functional, that pretty much describes it!Image removed.   But I also have not pulsed in a while, so I shouldn't jinx things here.

Specific problems I've had with pulsing - a lot of it is has just been an exaggeration or continuation of problems I had before CAP and diagnosis:  Extreme muscle spasms,  nausea, vomiting, being almost unable to walk at times ('concrete legs' I think is one term that has been used..), extreme exhaustion, difficulty with memory.  My concentration (I think?) always seems to be OK but just problems with recalling often very basic things become a huge struggle at times, and even more so with pulsing, both during and for many days afterwards.  So - pretty much most of the time there is one or more of those problems!Image removed.  I think the few 'good days' are really those farthest away from the pulses, and preceeding the next one.

(I hope this makes sense, I'm a little bit tired..)

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Reenie~

That might be a good idea to at least wait until you drop the valcyte dose before you pulse antibiotics.  Or perhaps even wait until you've been on valcyte for a month.  You'll be doing both meds for some time, so there is no real hurry to getting the pulses going.   I got slammed by the valcyte right around day 13/14. 

Someone recently started valcyte on the HHV-6 boards and wants a "companion" in the journey.  If you haven't been over there to post, I'm sure they would like to know you've recently started the valcyte.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Kelly,

Thanks for sharing.  I love your terms... Image removed.

I've included "bedhugging" as one of my "hobbies" during some difficult pulses.  I haven't endulged in awhile but hey, there's always the next one.  Image removed.

Timaca, 

I hadn't been to the HHV6 board so I'll go check it out, thanks.  

As for the timing, great to know I still might "respond."  I mean, I'd prefer not to feel worse but then again, from what I've read, most people that get improvement get slammed first.  

So, maybe time to hug that bed again soon... Image removed.

Reenie, fellow guinea hen

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie, Four months sounds so long not to see a change, but we all know it goes by in the blink of an eye. In your case, if the supps are mitigating any negative side effects, so much the better; it'll be an unremarkable four months, to boot.

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

Mac,

Thanks.  You're right, 4 months either feels like forever or goes by fast depending on which side of the 4 months you're on.  In fact, in 4 months I'll have been on CAP a full year. 

I won't say I'm not noticing anything, but it's all tolerable.  Sometimes the pain in my arms feels unbearable but then it improves.  I would think I would feel much better if I wasn't on Valcyte, but who knows.  

If I was feeling better on CAP alone, I would try to change or add something to feel some more response, like I was thinking of adding pyruvate before I began Valcyte.  Now I'll have to wait at least to stabilize again so I can do a normal pulse before changing anything else.   

I guess no pain no gain is the feeling I have but hopefully, I can feel only a little worse like I do now but still make some progress.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Timaca,

Thanks, I'm hanging... Image removed.

I guess the pain and headaches when they hit make me feel like I've over done it at the gym big time (when I used to go) or like I've been run over by a truck.  I hope this means I'll get some good results from it.  That would be nice, even if it takes a few months to get there.  It would feel like this was worth it.  

I suppose I've been minimizing how much I've been affected because I can force myself to get a few things done if I take a couple of days in between, mainly.  

I have a big question mark about when to pulse again as I think the longer I wait on it the more I may have difficulty.  I was doing fine on the pulses before starting Valcyte. 

Does anyone have any suggestions?  Wait or not wait... that is the big Q.  Image removed.

I'd like to hear what others' comments are although I think I need to feel a little bit better before risking feeling any worse although I'm concerned about waiting too long to pulse.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Sounds like you are getting some good reactions from the Valcyte Reenie. That must give you some satisfaction. Glad for you. But speaking from the heart... if you pulse won't it confuse which symptoms are from what as the Valcyte is slow to react over time? Won't you be better off dealing with the unknown first without mudding up the waters? So you know clearly what Valcyte is doing to/for you? I would think you would want to wait longer.

Then the other thing ... I totally agree with Timaca ... sounds as if your body immune system is working very hard now. Why add to your load now? You may tip the balance beyond your expectation. You don't want to paint yourself into a corner with misery for company. Image removed.

How is your liver holding up under the stress? It may take a few weeks to be clear on that too. So important to not rush and keep things manageable. Takes more time not to mention agony when you overdo it and have to stop to recooperate. Not to mention the expense if you need medical attention from overstepping.

How's your head lately? Thinking clearly or a bit muddled from the die off? We both know how that plays out. So be careful my friend. Make clear choices. Glad you posted for opinions here ... hopefully others with some medical knowledge will hop on board. Take good care. HugZ, MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM,

I'm not really concerned by which drug or which means I get weller so I'm not concerned to know which does which or I would only do one thing at a time and as we already know, I'm not.  Image removed.

As for the rationale about pulsing, I wasn't having any problems with pulsing before and I figured maybe I had gotten my bacterial load down to where I could manage it and am wondering if I wait too long to pulse if I would get slammed like I did on the 2 day pulse, however, I do realize that some folks go along fine on pulses for many months and then BAM! on their next one for no apparent reason so maybe it's best to simply wait, period.  (I guess I answered my own Q here)

As for my LFTs, they are all normal.  I don't have any liver issues.  The kidneys have been a little off as noted but this is to be expected by reading the Valcyte information so as long as it's not worsening, which it hasn't done, I think I'm fine there. 

Timaca,

I appreciate you looking in on me and offering your support.  I suppose waiting a few months would be ok.  In fact, I am scheduled to have all of my labs redrawn in May which would include viral and bacterial titers. 

Maybe then, it would be a good idea to figure out what I want to continue with.   

I'm thinking at some point that I would like to give my own immune system a chance to see what it can do on its own and maybe the labs would help me decide that.  

I know I hadn't been on either protocol long enough to consider myself recovered yet but... I do believe that at some point, it might be beneficial to see what the Vitamin D, adjuncts and maybe even intermittent CAP might do along with my own immune system, like some people are doing here now.  

At least I feel I have a plan of action, expert (patients & medical pros) advice here and some alternatives.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie -

Sorry to learn you feel like something the dog brought in and the cat has been playing with it for a day Image removed.

I was interested in the pain in your arms, hands and feet as I've experienced the same thing since starting CAP. At times, I feel like there are lightening bolts shooting out of my feet and if I was in a sci-fi movie I could fly. It can be very tiring and by the end of a day at work, I'm a "bedhugger".

Hang in there and keep us updated on your progress.

CPN, EBV, HHV-6, CMV - Biaxin 500mg/Doxy 100mg twice a day, NAC 600 mg, Acyclovir, all supplements, natural hormones and BP meds.

ecarey,

Thanks for the comments.  I thought the exacerbation might be increase in inflammation due to the antiviral doing its job and/or the fact that herpes viruses live in nerve tissue, like when one gets a shingles outbreak but I suppose CAP might also be doing that for you.  

I think the best way to manage is try to keep inflammation and toxin levels down with the supplements and ibuprofen.  That's typically how I deal with it along with epsom salt baths or the heating pad.  I recently began using the recommendation from the SHINE protocol for the bath... 1 cup baking soda, 2 cups epsom salt and 1/3 cup of peroxide.  

I think IR Sauna would be a good idea too for this symptom although I haven't tried it yet.  Sometimes bed hugging is just easier.    

In addition, I wanted to add THIS LINK in Ella's blog since I don't want to lose the comments made about taking a break, which I referred to in my previous post in this thread.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

hi Reenie,

glad you are getting some extra help from the Valcyte. I had to take anti virals a way back when my immune system was completely diminished.  I was getting huge ulcers on my face & it scared the heck out of me knowing how contagious H1 is to all areas of the body including the genital area.  I saw a viral expert who said that people can get H1 in the genital area as well.

Most days now, my 3 gms of L Lysine a day keeps the viruses down to a dull roar.  Occasionally I supplement a Famvir.  Keep up the fight!

Expect the unexpected.

Peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Hi Ruth,

Thanks for the encouragement.  If my viral titers weren't all so very sky high, maybe I would have waited to see what CAP alone for a year would do but I think there may be something to treating both infections simultaneously.  At least I hope so.  

I had taken Famvir for about 18 months about a decade ago, before there were many other antiviral meds available.  I thought it might have helped at the time.  

I've also taken L-lysine off and on over the years at the doses suggested by Dr Teitelbaum (about what you're taking) and felt it helps some too so am hoping the Valcyte might do more or something a little more lasting.  

I've been reading about neuropathic pain as I feel this is what I have and it appears that this could be caused by a postherpetic neuralgia so maybe, hopefully, the increase in pain is a sign the Valcyte is doing its job on the herpes infections and the pain will wane as time goes on.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

hey Reenie!

thanks for the links.

Gooo Arizona

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Ruth,

YW...  I wanted to add that I think, maybe, the neuropathy is settling down some now and I think,  maybe, my energy is improving some... fingers crossed.  If it lasts, I'll include it in my update above.  

Well, Arizona didn't win but at least they played a game to be proud of!  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Those of you that have taken Valcyte, have any of you experienced a drop in your WBCs and if so how much?  Do you have the pattern and any explanation as to what might have been happening? 

I think this might be a good sign so I don't want to be alarmed but I know it's important not to ignore lab abnormalities. I also don't want to alarm my Dr as he's following the protocol outlined by Teitelbaum, re, Montoya's treatment and lab testing.   

I'm currently reading Timaca's experience on the HHV6 board and I see her WBC dropped, then returned, then dropped again and returned again.  I'm just wondering if anyone else has had this experience and what your Dr made of it.  

TIA Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hi, Reenie, I'm sorry - we never checked that while I was taking Valcyte.  But I suppose I should ask him about checking that anyway,  mine were on the low side before CAP.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Reenie -

Sounds like you are making progress. Where do I find the HHV6 board?

I've been on Aciclovir the last month which has helped tremendously with the other symptoms I was experiencing and moppers didn't touch. 

Thank you for keeping us posted on your progress with Valcyte and hang in there!

Ellen

CPN, EBV, HHV-6, CMV - Biaxin 500mg/Doxy 100mg twice a day, NAC 600 mg, Acyclovir, all supplements, natural hormones and BP meds.

Hi Ellen,

HERE's the HHV6 Foundation board.  It's pretty quiet most of the time though. 

I've been researching online to find someone or some place to research the actual action that Valcyte has on the viral DNA and how/why it causes WBC and sometimes other cell counts to drop.  

I really don't think it's a "toxic" side effect but I'm just a patient.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie if I remember to I will have my count checked at my next appointment.  Valcyte was a truly rough ride for me but now that I'm off of it I am so, so much better than I was before I started taking it.

There are so many variables though.  If my count is up to normal, it would still be hard to know for sure - was it the Valcyte, or the CAP?

I LOVE that explanation by the way of how Valcyte works!  That is truly remarkable!

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Hi Kelly,

How long were you on Valcyte and did you stay on the 450 mg dose which is in your sig line?  I'm wondering if maybe there is still something else happening like if the Valcyte is only affecting the infected cells, do I have alot of infected ones, hence, the low WBC.

I guess nobody knows for certain.  I wish I had a good Dr that had alot of patients using Valcyte with lots of blood work and patients to use as experiences.  

I really don't feel that bad either; far from great but not so bad I can't function. Image removed.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hi Reenie - I think I was on Valcyte for about 7 months.  I felt fine initially -healthier in fact - but it seemed as though over the months it really began to wear me down.  However - this was also during the heat of the summer/fall here so - it's possible the heat contributed to how horrible I felt towards the end of my Valcyte course.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Reenie~  My WBC bopped below the reference range a couple of times (to 3.9).  My monocytes dropped too while on valcyte.  I would hang in there for the time being, seeing as your WBC actually came up this last time.  I used to know at what level the doctors got concerned about WBC.  I don't know where the info went.  I think it's much lower than where you are at. Keep monitoring the WBC...with any luck it will keep coming up.

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Timaca,

I researched as best as I can online and it seems that the neutrophils at 1000 or less would be dangerous by what I've read and mine never got that low but since my Dr's not familiar with this drug he's concerned by its effects on my WBC.  I know it might mean nothing but I have to listen to him without anyone else to trust on this.  I wish there was more info online available about the drug but there isn't. 

My Dr's office called me back this morning and agreed to allow me to continue on the lowered dose of 1 pill/day and retest blood in a week.  If the WBC remains below normal he wants me to stop the drug.  I think I'll have to comply w/o more information anywhere.  I surely don't need to cause more harm than good, you know?

Unfortunately, there's not alot of info on this drug anywhere, yet.  I wonder if I called the drug company if they would be willing to explain the actions of the drug to me a little more.  I think I might try contacting them and see if they're willing to offer some further explanation. 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Reenie,

I don't know what to say about your WBC, but i hope you're not going out and interacting with anyone!  When on Valcyte patients immune systems are very, very delicate and open to contrating the mildest cold - which can feel like an intense flu, and you already feel that way.  I hope you are resting - in bed or on the couch a good 20hrs a day.  Dr. Montoya's number one recommendation is to REST, and more REST.  Maybe your bone marrow will be able to produce more WBC this way.  

I don't recall the supplements you take, but here are some i was able to tolerate while on Valcyte: B12 sublingual, folate, Vit D 2000mg, multi-vitamin, multi-mineral, vit E 400mg.  I didn't push supplements, my body was working hard enough.  

I also looked over all my blood tests but did not have any problems - they just improved over time.  

VF

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

Viralfree thank you so much for posting this information!  I had no idea that this was the case while on Valcyte.  And this may also partially explain why I felt so horrible towards the end of my course of Valcyte. (I personally can't really avoid 'interacting' with anyone I have to keep my job Image removed.)

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07.