In Full Remission

[Farmgirl]

@Farmgirl
Hmmmm. Are they calling these heart irregularities diastolic dysfunction? I have that, and also odd high blood pressure spikes. Do you have usual heart structure? Read about 'reversal of the great vessels." Also,I appreciate that Lyme Borrelia/ viruses/ etc can cause heart issues, also autonomic dysfunction ( which is due to some pathogen?) Heart issues run in my side of the family that had the CFS/ ME/ FMS.

@Merida. Hi! . I wanted to thank you for the info about Lyme's and the Vector conference. Last year, not knowing much about Lyme's, my husband got the "Under our Skin" movies. Then with your advice, I have been investigating. Long story short, I am on a Doxycyline challenge now to draw out the bugs and in 2 months, will get tested through Igenex. Found a great doctor. I am very ill from the Doxycycline now...you have any advice for me...or anyone else that has Lyme's with confections?

I must admit it us all so very confusing! I try to read Dr. Horowitz' book, but it is way too overwhelming in my bad state.

Hope you are okay?? Take care!

 

[Issie]

Hi, Issie! I hear you on the mold! We used to play with mercury balls when our thermometer broke. That was the best! We know things now we didn't know then.

I so badly would like to just sit and speak with you about your story (and others) and hear all about your life. This is the first time in my 55 years I have ever met anyone with issues like mine and I do so long for these relationships, but I am hungry for more, so thanks for sharing that we me.

My vaccine reactions were HUGE and 1 was validated by Mayo Clinic in 1966. I have never been the same since.

I have been sick since I was 5 then further activation at 25 and 28. At age 28, I had a fever for 3 months when I got pregnant with my daughter and they told me to abort her. I eagerly refused! She is now an amazing woman! She DID need antivirals as soon as she was born. Broke my heart! I didn't even know until now that the "herpes-like" virus came from me! (from mono earlier and my broken immune system)

My son also had Epstein Barr Virus cancer. How dumb and I ....I just finally put two and two together.

I surely have POTS! It could not be found at the doctor's office, though I recorded a BP on standing of 70/40. I was SO dizzy all the time, but when I took gluten out of my diet, that symptom lessened, though I do not understand why. I am especially dizzy today cuz they just took 25 tubes of blood for testing me at the Lab! He he he .

Wish we had some answers and wish the cover up or push down, or massive back-turning on us would quit! I am hoping for us all!

I get A LOT out of vaxXed TV on youtube. I can relate mostly to the young gals with HPV vaccine reactions. A lot of them have ME/CFS.

Sometimes I just feel like collateral damage to this medical system. All for the greater good?

Bottom line is that my blood tests look like I have an AIDS like illness. Judy Mikovits should be praised for what she is doing. If someone would just let her in the lab, she could finish her work. She is an amazing person in my opinion. Anyone who would put their neck on the line AGAIN after what she went through is doing for the most unselfish reason. Most people would have just stuck their head in the sand and avoided the fury of the higher -ups. She has something important to tell us.

Issie, I don't know what Marcons is. My mother had Alzheimer's disease. She died in 2015.
Thank you for sharing! Have a very nice day, as much as one can in this state we are in.

PS I really enjoyed watching "Unrest"....did you see it?

Sadly, have not seen Unrest. Would love to.

My story keeps getting more complex. I don't have mold in my house. But my internal markers show active exposure. All I can figure is its internal (was also found in a thyroid biopsy). The doc who once thoight it was a protozoa (now a mold in a biofilm), says we have a genetic defect and are missing a protein. I'm doing lots of cleanses.

We are also treating Lyme and Babesia. Interesting you mention a virus like AIDS. My naturopath doc puts us on Alinia as the first thing. Some AIDS patients use it. And it's also for giardia. (Which has been associated with CFS.)

Sorry you have had a lifetime of this and you passed it to your kids. But despite me having been handed bad genetics - I'm thankful to be alive and to have experienced what I have in life. I'm glad to have been born - even with the issues. I'm sure your kids feel the same. My sister passed it to her kids too.

Issie

 

[Issie]

Forgot to comment on MARCONS. It's a antibiotic resistant staph. It is usually in the sinus but can be throughout body. One of the 7 resistant antibiotics was Doxycyclone. No wonder it did nothing for me. I took it for years off and on and it did very little. Initially, it helped. But now it might as well be water.

Issie

 

[Merida]

@Merida. I don't think they have looked at my BP, but I have had horrible BP, blackouts, passing out over nothing since I was a kid. How high does your BP spike and do you have symptoms?

Sorry I am so late responding. Just no extra energy to chat. I am investigating the BP and diastolic dysfunction more this week - with the cardiologist. Have you been diagnosed with POTS? Do you have Ehlers Danlos?

My BP is all over the place- was 160/ 120 in doctor's office. Then I lay down on my right side,nand it dropped 30 points. It is higher in the am - 140s or so/ 90. It goes up when I stand. It is often normal in the evening.
I am wondering if it is related to high intracranial pressure - which I probably have. Is this a common finding in retroviral patients - high intracranial pressure? Dysautonomia? Blood pressure issues?

 

[Farmgirl]

For real, true, primary ME :

Morning
--------------

Viread 245mg
Raltegravir 400mg


Evening
--------------
Raltegravir 400mg



If starting out then best to start on half doses and build up to avoid IRIS reaction.

Just like chemotherapy patients also essential to eat well, hydrate, and supplement with multivitamins just like they do for patients on chemotherapy. Just for extra sensible protection. Normal doses.


Good luck people, and those who will attack me, I hereby flick blue and pink pills at all of you !!



I am in full remission.


X
M
R
V
MLV Mikovits pinned to SFFV 7C10 GP55
I
K
O
VP 62 of Silverman was the biggest error
I
T
Silverman error was focus of negative studies



If anyone wants to get better, follow my lead.

If you don't you are letting yourselves be tricked out of a more normal life.

Hope your doctors support you and you manage to get sensibly monitored follow up and support on antiRETROvirals

@Hustler. Did you have a lot of physical issues(new ones) when you started the treatments? I heard sometimes the ARVs unleash hidden infections at the start of therapy. I am getting my immune marker test results back soon. I am a lot worse on AVs and ABs, but hoping to improve. I have 4 active viral infections ...been sick at least 30+ years, and now bacterial. Feel like I am dying slowly.

 

[Farmgirl]

Sadly, have not seen Unrest. Would love to.

My story keeps getting more complex. I don't have mold in my house. But my internal markers show active exposure. All I can figure is its internal (was also found in a thyroid biopsy). The doc who once thoight it was a protozoa (now a mold in a biofilm), says we have a genetic defect and are missing a protein. I'm doing lots of cleanses.

We are also treating Lyme and Babesia. Interesting you mention a virus like AIDS. My naturopath doc puts us on Alinia as the first thing. Some AIDS patients use it. And it's also for giardia. (Which has been associated with CFS.)

Sorry you have had a lifetime of this and you passed it to your kids. But despite me having been handed bad genetics - I'm thankful to be alive and to have experienced what I have in life. I'm glad to have been born - even with the issues. I'm sure your kids feel the same. My sister passed it to her kids too.

Issie

What you said at the end there us great. I am also glad to be alive and thankful for all I have!

 

[Farmgirl]

Sorry I am so late responding. Just no extra energy to chat. I am investigating the BP and diastolic dysfunction more this week - with the cardiologist. Have you been diagnosed with POTS? Do you have Ehlers Danlos?

My BP is all over the place- was 160/ 120 in doctor's office. Then I lay down on my right side,nand it dropped 30 points. It is higher in the am - 140s or so/ 90. It goes up when I stand. It is often normal in the evening.
I am wondering if it is related to high intracranial pressure - which I probably have. Is this a common finding in retroviral patients - high intracranial pressure? Dysautonomia? Blood pressure issues?

@Merida I read somewhere the other day about high IC pressure related to this disease. Can't remember where it was. I was looking for a friend who has it bad...headaches w/vomiting and needs to have some fluid drained regularly to cope with it. My issue with BP has always been low and I often feel I am about to pass out, but don't. Do you have both low and high BP? That diastolic of 120 for you is not good. My heart rate is all over the place, too.

Hope your cardiologist visit went well ...I go this week, too! (I think I have viral myocarditis)...anyways...

I do not have ED...do you?
I ended up looking into it because my hips "go out" ...a lot. They go out and I cannot walk for a bit. Usually it is a response to something I did a day before like sitting too long in a funny position or stretching.

The weather here has been divine lately! Cool and crisp. Enjoying it as the heat is gone.

We got off topic, but will you ask for ARV's ?? I already asked...we are waiting for my immune tests to come back. Nancy Klimas says ARV's are hard on the patient at first.

Next thing on my list while stuck in bed us to learn Chinese so I can watch that new video Hustler posted recently! . At least I can do something productive with my life....for once!

 

[Vaporization]

Next thing on my list while stuck in bed us to learn Chinese so I can watch that new video Hustler posted recently! . At least I can do something productive with my life....for once!

Damn you're ambitious.

This will get you started.

 

[Not dead yet!]

LOL I like to learn languages too. darn, should've mentioned that in another thread. It does pass the time.

 

[Franz72]

Hi Hustler, thank you for your information.
My wife has ME/CFS since 4 years. She started basically the same experimental therapy, just two months ago.
After 15 days on Tenofovir/Viread she started noticing interesting changes (able to sleep night, instead of day; and more).
When did your remission start?
Did you know that cistus incanus has the same property of Raltegravir? Researchers in Munich found it out recently.
Br
Francesco
from Austria

 

[Farmgirl]

Hi Hustler, thank you for your information.
My wife has ME/CFS since 4 years. She started basically the same experimental therapy, just two months ago.
After 15 days on Tenofovir/Viread she started noticing interesting changes (able to sleep night, instead of day; and more).
When did your remission start?
Did you know that cistus incanus has the same property of Raltegravir? Researchers in Munich found it out recently.
Br
Francesco
from Austria

@Franz72,
Welcome to these boards as a caretaker. I can't speak for all of us, but as a PWME I say so many of would be lost without the wonderful friends and family who daily meet needs we cannot. Bless you!

Hope the treatment "takes"!
Let us know with an update, please, it may give us all something to consider or reconsider.

I have been in Gratz, Austria. Truly lovely place. Farmgirl

 

[Farmgirl]

Damn you're ambitious.

This will get you started.

@Vaporization
Now that I have mastered Chinese, I am starting on Hungarian. With 17 case endings, should be a good challenge and I will never be bored!!

 

[Zapped]

Hi Hustler, thank you for your information.
My wife has ME/CFS since 4 years. She started basically the same experimental therapy, just two months ago.
After 15 days on Tenofovir/Viread she started noticing interesting changes (able to sleep night, instead of day; and more...

Great! I had an opposite reaction - more sick, ‘had to quit > 30 days.

 

[Franz72]

Great! I had an opposite reaction - more sick, ‘had to quit > 30 days.

which quantities did you start with?

did you read the article here which explains the tenofovir dosage issues?
http://www.drmyhill.co.uk/wiki/A_Regime_for_Antiretroviral_Treatment_of_Myalgic_Encephalomyelitis

 

[Not dead yet!]

@Vaporization
Now that I have mastered Chinese, I am starting on Hungarian. With 17 case endings, should be a good challenge and I will never be bored!!

Gratulálok! Coolest language on earth!​

 

[Farmgirl]

Gratulálok! Coolest language on earth!​

You been to Budapešt???
I love it there! Fortunately, the Hungarian are very educated people and many of them speak English. Of course I that was many years ago when I could travel. Can't travel worth beans now.

 

[Not dead yet!]

You been to Budapešt???
I love it there! Fortunately, the Hungarian are very educated people and many of them speak English. Of course I that was many years ago when I could travel. Can't travel worth beans now.

Yes I went there twice. I love it! Well I did until Orban got hold of it.

It's still the best kept secret in Europe. Except maybe the Carpathian basin - HRH the Prince of Wales was interviewed for documentary of that region and it really made me want to go see it. Or, I'd like to visit Croatia because I just like the science they publish, and their exports that end up in my local Sprouts market are gourmet quality.

I was born in Eastern Europe but never got to see it, except as a tourist. I was very young when we left.

Although my grandmother only spoke Hungarian (she identified that way and refused to speak anything else), my parents tried to dissuade me from learning it. I liked the language though and continued to learn it.

It's really cool that you're learning it. Curious how you decided to learn it though? Have you heard of: https://www.britannica.com/biography/Sandor-Petofi ? My mom used to play 8-track tapes of his work (not sure who the performer was) when I was a child. I think it was bad tactics if she didn't want me to learn the language. She also played audio tapes of this fellow. He's a comedian and this routine is medical.

There are a lot of "sayings" style jokes and this is one of them. He's saying "Stretch yourself until you stretch out." Except in Hungarian the phrase "stretched out" means "dead." Double meaning. He's a great one for colloquial Hungarian.

So is the accent on the s a new thing now? When I was learning it, it was assumed that American 's' was spelled sz and Hungarian 's' was pronounced "SH" with no accent on the letter s. There is also zs which is more like the s in the word "Asia." Just curious if the notation has changed.

 

[Farmgirl]

@Not dead yet
Oh, thanks for sharing all that! It put a smile on my face! I will respond more, but I just wanted to say that it was kind of a joke between me and @Vaporization that I was going to learn Chinese, which came in the response to the question....what do we do to help pass the time when we are stuck in bed with ME....I was joking with him about learning Chinese to while away the time. I cannot learn much of anything my brain is "out of it" most of the time from this disease or these diseases. Though my kids said there are some awesome apps now for language learning....that IS something we can do while we are in bed. :-D
I used to live in Sarajevo,which I loved and I can speak SerboCroatian and Bosnian, though I am rusty now. I was born here. We spent 3 years over there after the war. I love your story...will finish reading the rest later.

Thanks! Have a wonderful day and I love talking to someone who knows that area...it is so amazing there. Blessings! FG

 

[Farmgirl]

Yes I went there twice. I love it! Well I did until Orban got hold of it.

It's still the best kept secret in Europe. Except maybe the Carpathian basin - HRH the Prince of Wales was interviewed for documentary of that region and it really made me want to go see it. Or, I'd like to visit Croatia because I just like the science they publish, and their exports that end up in my local Sprouts market are gourmet quality.

I was born in Eastern Europe but never got to see it, except as a tourist. I was very young when we left.

Although my grandmother only spoke Hungarian (she identified that way and refused to speak anything else), my parents tried to dissuade me from learning it. I liked the language though and continued to learn it.

It's really cool that you're learning it. Curious how you decided to learn it though? Have you heard of: https://www.britannica.com/biography/Sandor-Petofi ? My mom used to play 8-track tapes of his work (not sure who the performer was) when I was a child. I think it was bad tactics if she didn't want me to learn the language. She also played audio tapes of this fellow. He's a comedian and this routine is medical.

There are a lot of "sayings" style jokes and this is one of them. He's saying "Stretch yourself until you stretch out." Except in Hungarian the phrase "stretched out" means "dead." Double meaning. He's a great one for colloquial Hungarian.

So is the accent on the s a new thing now? When I was learning it, it was assumed that American 's' was spelled sz and Hungarian 's' was pronounced "SH" with no accent on the letter s. There is also zs which is more like the s in the word "Asia." Just curious if the notation has changed.

@Not dead yet!
I will check those links you sent. You must be really smart. The Serbo-Croatian language only has 7 cases, so it is a bit easier. We lived in Sarajevo after the war doing humanitarian work. I loved it there. I miss it in many ways.

Croatia, I know this is off subject on this thread, but it is amazing. Can you still travel?

The Croatian coastline down the Adriatic us lovely. Split has an old Roman palace and Dubrovnik a walked city. That was one of my favorites.

My mind doesn't work like it used to, so probably won't learn any more languages. I am almost 60.

Do you have occasion to use your Hungarian?

I was joking about learning languages cuz I feel "dumb" and last year I could hardly speak for the longest time, or form sentences. I am treated for Lyme/ME/CFS, so I am slightly better now. In my younger years I did much more!

Thanks for sharing your story!

 

[Not dead yet!]

@Not dead yet!
I will check those links you sent. You must be really smart. The Serbo-Croatian language only has 7 cases, so it is a bit easier. We lived in Sarajevo after the war doing humanitarian work. I loved it there. I miss it in many ways.

Croatia, I know this is off subject on this thread, but it is amazing. Can you still travel?

The Croatian coastline down the Adriatic us lovely. Split has an old Roman palace and Dubrovnik a walked city. That was one of my favorites.

My mind doesn't work like it used to, so probably won't learn any more languages. I am almost 60.

Do you have occasion to use your Hungarian?

I was joking about learning languages cuz I feel "dumb" and last year I could hardly speak for the longest time, or form sentences. I am treated for Lyme/ME/CFS, so I am slightly better now. In my younger years I did much more!

Thanks for sharing your story!

I don't have much chance to use Hungarian and I don't think I could travel that far currently. I can still go to a few places more locally and I think I could manage on a cruise ship. If I decide "now or never" I'll probably take a cruise in the Mediterranean.

My husband and I tried to learn Japanese, but I got depressed because I always had to nag him to do it with me. And he chose the language! Argh, lol. We like anime, or I used to, back when overstimulation wasn't a thing. I can still watch old Lupin III movies. The new ones are just too horror/gore for me. Even not understanding Japanese, we would watch it in Japanese to get some more of the content that was erased due to expressions in the US being different from expressions in Japan.

Sorry yeah this is really off topic now, but it was fun getting to chat about it. Thanks!