Started Full Mino Fri 6/20 and Updates Before Tini

Submitted by Reenie on Sat, 2008-06-21 22:05

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 NAC flu? Has that happened to anyone as they increased the abx?

Also, I'm experiencing some headaches (I normally don't get them) along with neck and upper back pain that is relieved by my chiropractor (he says I definitely "did" something to my neck/back) and ice packs. The headaches and the neck issue could be related.

Oh, I also wanted to mention I found an online supplier and ordered a bulk supply of powdered Gleukos drink on since I'm drinking Gatorade and Propel Fit Water for glucose to help with any secondary porphyria since it's so extremely hot here now and couldn't find the Gleukos locally.

BTW, the ID Dr's office is still blaming the lab on messing up my blood tests and I still haven't received any word on them, yet. I'll call again next week but I doubt the lab (which I usually go to for blood draws) messed the tests up this badly.

I also experienced pretty bad neck pain in the beginning. My guess is because the affected nerves are becoming " unnumb" <- if thats a word. My interpretation of it was that as the bugs died, the toxins affected the nerves in the area and then they also started to come back to life, which probably causes pain. Just my guess though, my interpretation, nothing scientific. Glad things are going ok though







I think the full doses of CAP may be kicking in now as I’m having increase in chronic fatigue. It’s not completely debilitating but I must lie down more and nap and I’m dreaming during these times. It feels much like the effects I got from the Z on the MP although much more manageable with the SP measures, unlike the MP that said to “just suck it up” and that all of the misery you’re feeling is a good indicator that you are ‘herxing.’

I’ve lowered my Synthroid dose as per Drs advice based on my last labs on 6/22 so I need to give that a few more weeks before retesting. Some of what I’m feeling could be the reduced amount of thyroid hormone but I’ll have to wait and see. I think it’s prob the CAP is working really as the SP sxs wax and wane as well as the fatigue. The horrid neck/shoulder/upper back I experienced the last weeks has resolved.

I’m not sure when to add the Tindamax pulse as I’ve mailed away for the Valcyte and will take that as well. Any suggestions? Start pulsing first or Valcyte or both? TIA Image removed.

PS The Gleukos order was canceled and I found another place to order it online but I really think it doesn't taste very well.  I like Gatorade better, although I can't drink much of it as it's just too sweet so I usually add water to it.  I'll use the Gleukos as well because the glucose really does help eliminate secondary porphyria as long as you get enough of it!  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!  

How to keep a thread for continuity is difficult to say the least so I changed the subject of this blog a little to be more accurate and so my questions won't be missed as someone peruses the topics.  

So, does anyone have any suggestion as to whether I ought to add a Tini pulse first or the Valcyte first?  I'm going to wait a little while longer either way as I think I'm just starting to get a little kick from the M + Z now.  This is my 3rd week of the full doses.  

I did a C-Flush yesterday and I think it helped with the fatigue and malaise.  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- Valcyte is reported to cause a distinct "herx" somewhere during the first couple months for people who have significant viral load, so you might want to stabilize on the two abx at least, maybe do one short Tini pulse so you know what that is like, before you add the Valcyte to the mix. I'm mostly thinking that there's no telling when you might get the hit, or if, from the Valcyte, and at least you'd have a reference point or two from the CAP pulsing for comparison. Really glad to see how far you've come along given the immuno-suppressed state you started in. I'll be interested in your experience with the Valcyte.


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Reenie,  I will be interested in following your progress with Valcyte as well.  We seem to have quite a few ailments in common (EBV,HHV6, CPN, Thyroid/Adrenal issues, CFS/FM).  I've not (yet?)  treated my EBV & HHV6 and my titers were very high a year ago when I became ill.  Even though many others here have treated -- I'm still undecided since I read the results of the recent study (Dr. M*n**ya's). But, I am curious what my titers currently are.......

I agree with Jim's suggestion on trying the Tindamax first.... many people on "another support site" have been treated with Valcyte.... some with major "herx" reactions some not. 

 I'll be following your posts!

Be well and blessed,


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

Jim and Jeanner,

I like your suggestions. Yes, I think it would be a good idea for me to first try and see what the Tini is like, then start the Valcyte when it comes without any more Tini.

I read on Dr Teitelbaum's site where he explains the Valcyte dosing and treatment how folks with CFIDS that treat with Valcyte typically become housebound for two weeks time sometime when the Valcyte begins to hit. Then they see improvement: 

Treating Hidden Viral Infections, from Dr Teitelbaum 

"...He found that all patients who improved initially flared their symptoms from about the second to the fourth weeks of treatment-often leaving them housebound for that two week period. Most noticed significant improvement beginning at about three months into treatment. The patients I have spoken with who have taken it have been very pleased, but a few have developed recurrent symptoms when they stopped the medications after six months and are considering repeating the treatment..."

It will be very interesting to see if and how I respond! Image removed. I'm waiting with anticipation. 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!