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?

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 immuneⁱ 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 porphyriaⁱ, 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. 

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 CAPⁱ 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. 

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 IBSⁱ issues intermittently, which for me is typically a (good) sign of increase in endotoxinsⁱ, 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 BIDⁱ 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 Valcyte.  I 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 supplementsⁱ 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!  

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.  

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 FMSⁱ and I feel a bit more fatigued and lethargic lately.  

So far, so good.

Sunday, 1/4/09 -

Tomorrow I'm starting Valcyte for CFIDSⁱ 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 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 antibioticsⁱ and some don't.  Since my titers are high on several of them, IMOⁱ, Valcyte warrants a trial.  

Reasons to suspect viruses in CFS

Treating Hidden Viral Infections by Dr Teitelbaum

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 supplementsⁱ 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. 

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