Reenie's blog

Lab Tests - Good News, Bad News

I got my lab results back today for viral and bacterial titers.  There's one test that was missed and so I'll have to call and see if it was done or not.  It was the HHV6 IgGi.  Only the IgM was done and that was negative, no surprise. 

But the rest of the results are quite puzzling to me.  

While the IgG titers for Mycoplasma P and Chlamydia T are still high, they are lower than before so that looks like CAPi is working, I think.  

So why are the viral titers much higher than before? I am now high for 5 out of 6 of the Coxsackie B viruses where before I tested high for 4 out of 5.  

My EBVi VCA IgG has always tested 1:1280 with a ref range of <1:10 and now it measures 3098 with a lab range of >120 being positive.  

5th Tini Pulse & So Much More

Well, it's been awhile since I posted a blog.  So much has been happening to me... PC crashed, family stress, rental renovations and here I am, still on CAPi

I've had some changes in my thyroid functions although I'm not really sure how to describe them.  I'm very lethargic at times with lack of motivation to leave the house or get dressed much but that comes in between being busy with personal life issues so I'm far from bedridden or housebound really.

I've completed my 5th tinii 5 day pulse (12/9 - 12/13) and am planning on starting Valcyte now that my pulses seem quite manageable.  

3rd Tini Pulse - Full Steam Ahead!

I was reading back thru my blogs to see what caused me to decide when to stop the last pulse at 2 days.  So far, I'm halfway thru day 2 and I'm feeling OK.  Actually, I may even be feeling a bit better than I did before starting this pulse but that might be stretching it, so I think I feel about the same as before pulsing.  Looking back in my blog I wasn't feeling all that great before and then pulsing magnified it so I stopped.  It felt like it took forever (about 3 wks) before I felt like I came back to my starting point, pre-pulse.   

Gathering Nuts for 3rd Tini Pulse

October 9th will be six weeks out from my last 2 day pulse of tinii.  I've been feeling better but have still been experiencing some ups and downs.  I'm making plans to begin my next pulse and so far, this is what I've done:

1.  Increased thyroid meds - this was thought to have been a cause of my 3-4 lb weight gain along with added fatigue.  My sleep/wake cycle has improved although I can't say my weight has budged, yet.  

MRI Report

I haven't seen my films but this is a copy of my report and I wonder what the significance is of what they say here, if anyone knows.  The key is that my GP says there's no significant changes reported from 2004 but I've been on various protocolsi which might have kept anything from advancing, IMOi.  OTOH, the terms I've emphasized in the next paragraph were not reported on my last MRI in 2004 as I recall. 

I was told by a neurologist in 2004 that he did not believe I had MS due to that MRI and that the foci in that MRI were in his opinion "nothing" but I do see some words in here like "demyelinationi" and "small vessel ischemic disease" and even "traumatic brain injury"! 

Good News Today and Maybe Better Days Ahead

I had my annual dexa scan done today and reviewed thyroid and Vit D tests at the endocrinologist's. 

My bone density has GREATLY IMPROVED.  I am almost out of the osteopenia range and into the normal range now and I am 8-9% improved from my baseline test of 2002.  Laughing

Last year, I had lost all gains and was below the 2002 baseline after reducing my Vit D down to 8.  My current Vit D is 55.  I only began to add Vit D back in about 6 months ago so I think these results are truly amazing.  

Coming Back to Life - Maybe Not??

Today is the 16th day past my second tinii pulse of only 2 days and I am finally feeling like the dark cloud that's been overhead is fading away.  It feels as though the gloom and doom feeling manifested itself as insidiously as it is leaving, ever so gradually, until finally I can feel the change.  

Wow... hard to believe this was all from CAPi but looking over all of my notes I have to believe it is/was.  

I have some questions if anyone would like to help me out, with ideas, thoughts, experiences... 

Feeling Pretty Good Today

Well, today is the 12th day after my second tinii pulse that lasted 2 days.  I'm not sure if it's just from time or adding some new supplementsi but I'm feeling much better today. 

I've recently added a few supplementsi to the ones I've already been taking: 

Horny Goat Weed
Lactoferrin
SAMe
Phosphatidyl Serine
Methyl B12 

I sat outside in the sun (got some D) and went for a swim with my fur kids today after being too sick to even think of doing anything for well over a week now.  Cool

 

2nd Tindamax Pulse Completed & Holding Off on Valcyte

I did a 2 day Tindamax pulse Mon/Tues this week.  This is the last pulse I plan to do for awhile as I'm going to begin taking Valcyte and will create a new blog for that.  I think I may try using the pyruvate protocol once I get stable on the Valcyte and maybe after the initial herx/die off from it rather than the tinii pulses during the next few months.   

I have been feeling rather horrid lately, for me, which means I'm pretty much housebound and have moved bed hugging up the list for one my top "favorite" daytime activities lately.  I can do one activity every few days out but then have to return home quickly for a nap.  This started before the tini pulse but I think it's increased some now.  

How to Combine Valcyte With CAP; Suggestions Please?

Jim says, HERE<  "But you may need to take a break from the CAPi until your enzymes normalize" and I noted on the HHV-6 Foundation's< board folks seem to do the Valcyte therapy alone and then many relapse.  I see that some are using doxyi alone to treat CPni after Valcyte but that viral titers have elevated after treatment.  I'm thinking one may need to correct the bacterial infection with CAP WHILE TAKING VALCYTE so that the viral henchmen don't return with avengence.  So with that in mind, here are my questions:

One Day Tindamax Pulse Aftermath

Can this be aftermath of Tindamax pulse, secondary porphyriai from heat/sun or a combo of both? It all began Thursday afternoon (13 days after tinii one day pulse) but I was having a lot of stress dealing with the cable and phone companies prior.

Which to Start First? Pyruvate or Pulse?

Hi all,

I was wondering if I could get some feedback/comments/suggestions before I make a choice. The Valcyte has been put on hold due to pharmacy needing more info before filling the order so that's not in the mix, yet. I'll be adding Valcyte, later, if/when I can get my script filled.

But I was wondering on whether I ought to try improving how I feel first (w/calcium pyruvate) or start the tinii pulse first. Undecided

Lab Results Finally! Interpretation & Suggestions Anyone?

Hi All,

It's taken 3 blood draws due to lab errors and over a month to get the final results. I still think there are some lab tests missing from the original order but I'm not even going to bother to try to find that out now after this slapstick comedy of a lab requisition. It's been insane. In fact, when the ID Dr's office mailed me my results I received an empty envelope so I ended up having to pick them up personally from the office. Of course, the ID Dr believes all of these tests to be "normal." Yell

Started Full Mino Fri 6/20 and Updates Before Tini

I'm now on full doses of both of the main two antibiotics. So far, so good, however, it's so very difficult to tell right now whether my symptom increase is coming from my extra daily activity, (been doing repairs on a rental) the extremely hot weather we're having here in hell, er, Phoenix right now (was 115 this afternoon in the shade) or is it simply the antibiotics are now catching up with me?

At first I thought I was having allergy symptoms from cleaning the filth and dust in the rental which I do believe is part of it but I'm wondering if some of the symptoms I'm having are actually an increase in NACi flu? Has that happened to anyone as they increased the abxi?

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