Hi guys! This is the perfect day for me to post my results as I am crashing (yuck!
) from a new dr. appt 2 days ago and I can demonstrate how much acyclovir has helped me UNTIL I experience PEM! For example...I couldn't figure out how to fill out this questionnaire in a normal easy way! I can't remember how to cut/paste etc, show italics, change typeface, color etc.
I just now had to type a few words in each of the questions - I could only hold 2 or 3 words in my brain at a time...so, I had to continually scroll back down to Leaves post and copy her q's! up and down - up and down! A week ago (a good week) I probably could have memorized EVERY question on the "poll" without having to refer back (and also how to cut/paste etc.!!) -what a difference a day (or a week) makes!
I actually answered the questions in GREAT detail yesterday (even MORE long winded post than today!
) and yet I lost the whole thing because I forget to plug in my laptop...THAT was the beginning of my crash (always about 24-48 after the "offending" activity...like clock work! amazing!) Anyway,I thought this was a classic example.
So here goes (my not very "abridged" version!LOL!
1.Have you used acyclovir? yes
2.For how long? approx. 3.5 years
3.Did you start right out at a target dose or did you gradually increase your dosage?
Started at 1,000 (1 month), then 1,200 (3 months-1.5 yrs.),3200mg. (from 1.5yrs. to present)
4.Why did you start?
Have been under care of Neuro for years (dx Trigeminal Neuralgia, Migraines/optical Migraines/C-Fiber Neuropathy, Asymmetrical Myelopathy, finally also dx ME/CFS) Also abnormal clinical/lab findings: Positive Babinski, Hoffmans, Hyper-reflexia, Tinnitus, Basal Ganglia/Corroidal Fissue lesions - Brain MRI).
He knew Dr. Chia and his work with Enteroviruses/CFS, knew his protocol and started me on Acyclovir pending appt w/Chia. Oh, I was bedridden at that time.
5.And what symptoms led you to acyclovir?
Typical Viral-type (sore throat, swollen glands), AND symptoms of Brain (fog, cog/memory headaches), Respiratory (SOB), ANS (OI), Heart (Tachycardia, Chest Pain), Gut (nausea, abdomenal pain, "IBS"), Muscles (widespread pain) - signs of viral involvement.
Within 1 month of STARTING Acyclovir I developed Shingles (source: a Lymph Gland and nerve pathway in my neck).
6.Any Lab results that lead you to acyclovir?
Usual High EBV, CMV, HHV-6, VZV, (Enteroviruses by history/clinical exam only - no stomach Biopsy yet!)
7.Were there side effects that caused you to lower your dose or stop using acyclovir?
Side effects of mild nausea/queasiness, lack of appetite, thinning hair(stopped now), slow, slight, steady increase in Liver enzymes (monitored carefully) - but tolerable.
NOTE:I feel MUCH WORSE when I don't take Acyclovir! Have tried to titrate down by 1 dose (800mg,) but have rapid exacerbation of all symptoms including dramatic reactivation of Shingles.
I can probably continue for 1-2 more years w/Acyclovir BUT must begin to lower dosage (by 800mg.) and ADD Equilibrant (very slowly: 1/2 cap. only for 3 months to start - IF NO reactivation of shingles after 3 mos. can up to 1 cap)
8.Has acyclovir made any difference in your health status (for better or worse)?
Yes. Quicker recovery time w/PEM. UNLESS I over-do, a noticeable improvement in Cog/Memory probs (can read, now!). Slight improv. in pain. No improv. in Fatigue, flu-y feeling. I'm housebound (ONLY leave for dr. appts.) - but can get out of bed, now!
*I have a question (I will post here, as it might not be off-topic (if it is, I'll move it!): I know that Acyclovir is SUPPRESSING viruses (and it it obviously suppressing Shingles).
I no longer catch colds/flu's - EVER!
I know CFS is considered to be a NEURO-immune disease...but is it also an AUTO-immune disease?
My new doc said that since my Shingles appear on BOTH sides of my neck at once, that only happens w/AUTO-immune Disease. Do "we" have both? What is an Auto-immune Disease?
2 days ago I had a blood draw (unusually UNpainful! GOOD!)...but within 8 hours, the site of the "stick" - inside r. elbow - had become infected! Tiny open sore, inflamed, angry, red, about dime-sized, tiny discharge, no fever though, no red streaks...but painful.
Immediately treated w/Bacitracin. Today the area of redness is receding a bit, still a tiny open sore - but not gone yet. (Tech was good, no bruising as I often get, wore gloves etc.)
I've NEVER had this type of reaction before. Any quesses as to what this might mean? Any connection to AV use? I do bruise VERY easily now (BIG, dark bruises - sometimes I can't even identify the causes).
C'mon, my incredibly intelligent and informed Friends! What gives with this?
(And Thanks, Shane for starting this thread...so we all can gather support and compare notes!)
What we are all doing....is NOT an easy thing to do
...but perhaps we will turn out to be "Trail-Blazers"!
Wonderful if we could help others!
BTW, it took me over 2 hours to write this post - Jeepers!