Antiretroviral Trial

[Daffodil]

city..thanks for suggestion. i am seeing cardio on march 7....i will ask him about this. i am not sure i can do anything to lessen the pain because when i had it, i was in bed almost 24/7.

another update: doing very poorly again! over the last 2 days, complete return to square 1. severe brain inflammation/fog, IBS worsening, lymph node ache, etc etc etc.

my condition is so severe, i now feel silly for even hoping for some sort of recovery. i wish i didnt have this nagging suspicion that i have another retrovirus in my CNS. oh well maybe i'm screwed either way.

 

[leaves]

have you tried ldn?

 

[Daffodil]

yup..tried that one too!

 

[Lee Ann]

Hi Charles,
I'm glad to know that I am not the only one who had a disappointing visit w/Dr Black. It took all I had finanically and physcially to make the trip. I had read alot about dr lapp but didn't know anything about dr black. When i called to make an appt, dr lapp was so far booked out that I decided to see black instead. I thought if she is working w/lapp she had to be good. Right I'm soooo naive.. maybe just desperate and they know it. She told me my symptoms were atypical CFS what does that mean. Then I did the tilt table. Of course she said I had POTs I went to Vanderbilt to the autonomic dept and had numerous autonomic test done and they told me I did not have POTS After I got home from seeing black I had questions they never once returned my phone calls it was like i didn't exist. I felt so betrayed. I finally called their office and talked to how knows who and they had dr lapp call me. He was nice and apologized but know we are suppose to have a phone consult in march. For what reason?? to remind me to drink lots of fluids and pace myself. Any way sorry for the rant.

 

[TheMoonIsBlue]

city..thanks for suggestion. i am seeing cardio on march 7....i will ask him about this. i am not sure i can do anything to lessen the pain because when i had it, i was in bed almost 24/7.

another update: doing very poorly again! over the last 2 days, complete return to square 1. severe brain inflammation/fog, IBS worsening, lymph node ache, etc etc etc.

my condition is so severe, i now feel silly for even hoping for some sort of recovery. i wish i didnt have this nagging suspicion that i have another retrovirus in my CNS. oh well maybe i'm screwed either way.

Has anyone heard from Daffodil? She posted that her cardio appt was yesterday. I hope everything is OK.

 

[Charles555nc]

If daffodil is still reading, I suggest she takes a gram of vitamin c away from her antiretroviral meds (Im starting to think immune suppressed people have a sub clinical vitamin c deficiency), 100mcg of selenium, a couple mcg of melatonin, and 50mg zinc glucanate. Any deficiency in those minerals I think has serious detriment to recovery/immune function.

Ive also found taking a lyme medication tindamax two days a week, helps my symptoms. best wishes for Daffodil!

 

[Jenny]

Interesting you say tindamax helps Charles. Lyme patients often say this causes symptoms to worsen as this med kills one form of the bacterium.

I've tried it for several months, along with azithromycin and doxy on separate days, and it causes an almost intolerable escalation of symptoms. It's clearly doing something but I've had no improvement in the long term.

Jenny

 

[Daffodil]

thanks, guys. i take a vitamin C tablet..will check to see how much.

still holding at 20% improvement...mostly homebound, sleep most of the day but feel a little better, no longer suicidal.

saw cardiologist and ECHO was normal..i was surprised. doctor thought maybe muscle spasms(?) were causing the AZT chest pain....cardiac CT will follow.

sue
xoxo

 

[shannah]

Heh Sue,

Jamie has just posted some interesting comments on heart and AZT

http://networkedblogs.com/fdcmJ

 

[Daffodil]

thanks shannah

 

[bertiedog]

Hi Sue

I just wanted to mention that when my thyroid took a nosedive because I was unable to tolerate my thyroid medication due to severe stress which hurt my adrenals I experienced very nasty chest pains. I guessed they were to do with my thyroid having done lots of searches on thyroid and the heart.

Have you checked out this connection because we know there is an HPA axis problem in ME/CFS?

Pam

 

[heapsreal]

hi sue,
Still watching out for your posts and keeping an eye out for ya. Good to see some improvement with the arv's.

cheers!!!

 

[TheMoonIsBlue]

Hi Sue, Glad to hear from you again. Glad to hear that your ECHO was normal, although it sucks to have normal test results when you have symptoms! Hope someone can help you find something to help with your heart symptoms. Are you back at your normal dose of AZT or the lowered dose? (I can't remember what the doses were, sorry!) I know it's so hard with so little knowledge to go on, but I would really think that supplements that support the Mitochondria would be essential for a person with ME who is taking ARV's, since we (likely) already have mitochondrial dysfunction. Has your doctor given you to OK to try some Mito. Supps?

<) Moon (>

 

[Daffodil]

hi all. sorry too ill to post much. last 3 days have been horrible.

T3 was low once...have to retest..but i think its hyperthyroidism that causes the heart problems..

i try to take whatever vitamins i can remember to take...i have carnitine which i think helps mitochondria.?

my day revolves around sleep and waking up to take meds. definitely not feeling good at all..today only maybe 10% better than before drugs. a lot of inflammation and night sweats.

i am still on the lower AZT dose so maybe the virus in my CNS is spreading again cuz i'm under-treating? who knows...

i feel like unless the WPI has something up its sleeve, I am gonna be toast.

 

[TheMoonIsBlue]

I'm so sorry Sue........Don't feel like you need to post if you're sick. But I know lots of people were worried about you when you were gone for a while

I wish some doctor would help you with this inflammation. Some sort of anti-inflammatory medication. Something. We know it's viral but the viruses have to be causing inflammation. Anyone have any ideas on drugs which reduce inflammation apart from NSAIDS?

{> <}

 

[ukxmrv]

Big hug to you ((((SUE))))

I hope that the WPI has something being cooked up for all of us. Hang on in there. The UK conference "invest in ME" is dedicated to "The Way Forward for ME - A Case for Clinical Trials" - so I hope we will have some news then.

http://www.investinme.org/IIME Conference 2011/IiME 2011 International ME Conference.htm

 

[ikke2001be]

Hi,

For the inflamation, MSM (methyl sulphonyl methane) works pretty good for me. Taking 15 gr/day. Without it, I can hardly walk (knee's), or digest anything. Might wanna give it a trie, it's not that expensive.

Regards,

 

[Daffodil]

thanks guyz. celebrex was suggested to me...but the idea of adding yet ANOTHER medication....or supplement...UGHHHHH. makes me wanna hurl. maybe ill try celebrex. i know inflammation is supposed to make the infection worse even.

so i could no longer stand feeling like death, so i again(!) increased my AZT to 300 BID. i have taken 3 doses and already feel a tad bit better.

i saw a cardiologist regarding my severe chest pain on this AZT dose and he gave me an ECHO, which was normal. i am scheduled for a coronary CTA and if that is normal, i might be prescribed some sort of anti convulsive medication. the doctor thinks my cardiac issues might be some sort of muscle spasm or something.

i would prefer an angiogram but i don't think he is willing to order one.

most of the docs i have spoken to said AZT wouldnt damage the heart so much so quickly that it would cause me this sort of pain. this cardiologost said protease inhibitors are more harmful to the heart.

when my brain starts to feel better with less inflammation...thats when my heart starts to act really weird.

if i would be able to stay on this dose of AZT, it would really be wonderful....even though i could never get out of bed, being able to read and think a little again..thats just better than anything in the world.

sue

 

[*GG*]

Daffodil, perhaps you can get a generic for Celebrex? I was prescribed that, but asked for something else because of the co-pay for me.

GG

 

[dannybex]

Wasn't Celebrex associated with increased heart troubles a few years back?