My Experience on AntiRetroVirals

[Mary]

She has never mentioned (nor my previous doctor) that my MCV and MCH are always high.

High MCV and MCH very often (most often?) indicate a B12 and/or folate deficiency, which are characterized by a form of megaloblastic anemia (extra large red blood cells). My MCV was near the top of the normal range for years and years before a doctor mentioned its significance. I had been taking methylcobalamin for several years with no noticeable results, but when I started taking methylfolate in 2010, my energy markedly increased (as well as my need for potassium, which continues, but I don't care because low potassium is easy to remedy!)

However, my MCV has not come down in the last 6 years, though I feel better overall. I had been expecting it to drop. I recently came across something called thiamine-responsive megaloblastic anemia, which is supposed to be very rare, but is also characterized by high MCV. Symptoms include hearing loss and diabetes, as well as fatigue etc. (http://ghr.nlm.nih.gov/condition/thiamine-responsive-megaloblastic-anemia-syndrome) As the title indicates, this form of megaloblastic responds to thiamine supplementation. Symptoms generally manifest early in life. Well, I don't have diabetes but I have had some non-age related hearing loss (not too much) and also my blood sugar tends to be high-normal, despite being extremely careful about my diet. Recently I tried taking additional thiamine, and within 2 days had a great surge of energy. Unfortunately it didn't last, it's a long complicated story and this is already too long and complicated! But I just wanted to put it out there that in addition to, or instead of, a folate and/or B12 deficiency, you may be low in thiamine.

 

[Ellkaye]

PEM improved within the first week on viread along with inflammation/pain.but as true ME patients well know they can distinguish PEM with expertise and so believe me,the PEM disappeared.
Then over the months viread alone lost in effectiveness. Hence i added/now add the raltegravir every ten days for a few days per month.
At some stage people have just got to face the reality of arv's being effective.my vo2max increased by the same % as an athlete's doing hard training for a good year would.no more pem. plus the huge rise in cd3,4,8. Increased immunity.
I can understand people asking questions.
My answers are the right answers. I didnt just get a quick transient fix. The fix is continual and sustained long term.
Just reporting the facts.
To be honest I would be interested in learning more about beta-interferon's potential during the cold winter flu season for a bit of extra reinforcement. Even for the severely ill to prepare them for arv therapy perhaps as they re coming from lower down.

 

[ScottTriGuy]

This can be caused by reverse transcriptase inhibitors which I assume you are on.

I am, and they were elevated prior to ME, so perhaps that is it.

 

[Ellkaye]

I am, and they were elevated prior to ME, so perhaps that is it.

Is viread on the cards for you?

 

[halcyon]

I am, and they were elevated prior to ME, so perhaps that is it.

Make sure it's not macrocytic anemia obviously, but this is common with these drugs. They actually use elevated MCV as a surrogate marker to determine treatment adherence in poorer countries.

 

[ScottTriGuy]

Is viread on the cards for you?

Not currently.

 

[Ellkaye]

Not currently.

Cos u take a different arv in the exact same class as it?

 

[ScottTriGuy]

Cos u take a different arv in the exact same class as it?

Yep, I'm taking Kivexa from that same class.

 

[ScottTriGuy]

This ARV that targets monoclonal antibodies looks promising, in studies now:

http://www.aidsmeds.com/archive/TNX-355_1631.shtml

 

[Ellkaye]

This ARV that targets monoclonal antibodies looks promising, in studies now:

http://www.aidsmeds.com/archive/TNX-355_1631.shtml

Looks excellent indeed. It will let the cd4 cells breathe better

 

[Knockknock]

PEM improved within the first week on viread along with inflammation/pain.but as true ME patients well know they can distinguish PEM with expertise and so believe me,the PEM disappeared.
Then over the months viread alone lost in effectiveness. Hence i added/now add the raltegravir every ten days for a few days per month.
At some stage people have just got to face the reality of arv's being effective.my vo2max increased by the same % as an athlete's doing hard training for a good year would.no more pem. plus the huge rise in cd3,4,8. Increased immunity.
I can understand people asking questions.
My answers are the right answers. I didnt just get a quick transient fix. The fix is continual and sustained long term.
Just reporting the facts.
To be honest I would be interested in learning more about beta-interferon's potential during the cold winter flu season for a bit of extra reinforcement. Even for the severely ill to prepare them for arv therapy perhaps as they re coming from lower down.

That is one of the symptoms that bother me the most.
Any extra activity or abrupt exercise i do will make my muscles hurt. Its no a really bas crash as far as enery, but it feels like my muscles and my nervious system spine etc gets inflamation.
How are you doing with you ARTS regimen? Viread and insetress?? Still taking them? How is health? Energy?
Side effects etc??
Thanks for sharing this with us.

 

[Knockknock]

I am, and they were elevated prior to ME, so perhaps that is it.

Do you know what happen to this member??
Ellkaye??
She posted last Jan 2016,
Little after her comments on the antiretroviral success that she had on tenafovir and raltegravir
I would like to asker how us she doing.

 

[Sancar]

Do you know what happen to this member??
Ellkaye??
She posted last Jan 2016,
Little after her comments on the antiretroviral success that she had on tenafovir and raltegravir
I would like to asker how us she doing.

Knockknock ~ Like you I would really appreciate knowing how Ellkaye is doing? The information she posted was so informative. I would have liked to have had the opportunity to pm her and ask some questions.
To bad Ellkaye disappeared... Perhaps it's a very good sign! Complete recovery!!!
I would still like to know if she is on a maintenance dose? How her symptoms if any have played out to date.
I wish her ALL the BEST!

 

[Jill]

Hiya,

Knockknock ~ Like you I would really appreciate knowing how Ellkaye is doing? The information she posted was so informative. I would have liked to have had the opportunity to pm her and ask some questions.
To bad Ellkaye disappeared... Perhaps it's a very good sign! Complete recovery!!!
I would still like to know if she is on a maintenance dose? How her symptoms if any have played out to date.
I wish her ALL the BEST!

I haven't heard how she is doing . I think she got advice from Judy Mikovits

 

[Sancar]

Hiya,

I haven't heard how she is doing . I think she got advice from Judy Mikovits

Thank you Jill ~ Like the rest of us I wish her the best~~

 

[heapsreal]

Knockknock ~ Like you I would really appreciate knowing how Ellkaye is doing? The information she posted was so informative. I would have liked to have had the opportunity to pm her and ask some questions.
To bad Ellkaye disappeared... Perhaps it's a very good sign! Complete recovery!!!
I would still like to know if she is on a maintenance dose? How her symptoms if any have played out to date.
I wish her ALL the BEST!

Ellkaye is a guy and last i heard, a couple months ago, said he was recovered although is still on a combo ARV treatment.

He's very enthusiastic about retrovirus as a cause of cfsme, maybe too enthusiastic and then gets banned or suspended from forums as many others have similar enthusiasm for certain other causes and the clashes usually turn into drama.

I still think retroviral cause and or arv treatment should be kept on the radar just like anything else until a definitive cause is found?????

 

[Sushi]

He's very enthusiastic about retrovirus as a cause of cfsme, maybe too enthusiastic and then gets banned or suspended from forums as many others have similar enthusiasm for certain other causes and the clashes usually turn into drama.

It is the aggressive clashes that are the problem on forums--not the subject matter. Members are welcome to discuss any topic related to this disease--as long as they keep to the forum rules of civility.

 

[heapsreal]

It is the aggressive clashes that are the problem on forums--not the subject matter. Members are welcome to discuss any topic related to this disease--as long as they keep to the forum rules of civility.

Yes, debate disappears. Some are just as aggressive for retroviral cause vs against retroviral issues. People forget that nothing is definitive in cfsme.

 

[lansbergen]

I still think retroviral cause and or arv treatment should be kept on the radar just like anything else until a definitive cause is found?????

I agree