In Full Remission

[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

I have a question for you, @Hustler, then, how do you define "real, true, primary ME"? Can you give a list and maybe even tell which of your symptoms are better now that you have been so long on ARV therapy...cuz I pretty much, these last few years, feel I am now dying a slow death. I just started AV's and am even worse than I was, but seeing a few changes. I am glad you feel better, by the way. Thanks for telling us. Also do you need to stay on that treatment for life?

 

[Farmgirl]

If it were as simple as vaccines, one would think CFS/ME would be more common among children, whereas everything I've read suggest you are more likely to develop CFS/ME at an older age, from late teens and upward with increased likelihood. This better fits the idea that you catch some other bugs on the way as you get older rather than a vaccine being the trigger. Kids also seem to have a better chance of spontaneous recovery than what adults have.

Hi! I am new here...nice to meet you all.:-D I am one of those kids!
I think it may depend on the vaccine components. Now, I am not an expert, but I have found that each vaccine has its own ingredients, hence, the varying responses in humans to whatever vaccine they were given. I have had the same ME symptoms since I was 5 years old when I had a severe reaction to the Smallpox vaccine. (symptoms have worsened over time) So, I didn't have anything to compare my symptoms to b/c I had never really known "normal". As a child, I just assumed that everyone felt that same way I did. So I lived with constant dizziness, low blood sugar, abdominal issues and migranes almost everyday for years and other issues. I was able to attend school illness and all.

@age 23 contracted EBV, then, I believe it was passed to our children; son had EBV based Non-Hodgkins Lymphoma at 6. After a fever for 3 months while pregnant, our daughter came out needing antivirals for the same virus group. I believe I have had ME since that vaccine. If you have done any research into teen girls getting HPV vaccine, you can see that they are getting ME symptoms,too, but they can see the night and day change before and after the shot. The other ingredients in the vaccines, besides the "bug" can play a role in breaking down the blood brain barrier, as I understand it.

In a sense, that is the silver lining in getting it when I was young...I am accustomed to feeling bad. Unfortunately. I think it would be really hard to switch from "normal" to ME in a short period of time, especially if you depend on working a job to provide for your needs.
Best to you all!

 

[Zapped]

In any case 245mg viread and 800mg raltegravir daily seems to hit the spot sweetly. Half dose built up to full dose to prevent IRIS. Multivitamins prior and during. Just like they give to people on chemo.

Having tried Valcyte twice, w/o success I am an otherwise semi-informed candidate for your
successful ME protocol.

Assuming these rx's are tablets then the answers to the following are obvious... . Otherwise, for those of us not familiar with these antivirals would you please describe options as to their form and the methodology of protocol, e.g. oral, IV, self injections, or other, and frequency, sic daily; in outpatient setting or home use? I have read the mfrs' data sheets but they could be prescribed off-label, as they apparently were for you.

Also, did you use an infectious disease specialist in the know about ME? I'm baffled as to how you came up with these rx's. IYO, what is the likelihood of positive reception to a request for a trial from an ID-MD; with or w/o having to bring him/her up to speed with appropriate research data?

Thanks, and congratulations from a 30-year 'victim', still struggling.

 

[Merida]

@Farmgirl
I sure relate to your comments. As I mentioned my son got definite EBV in 1986, age 5. After 2 weeks, thought he was getting better, but then was hit with severe urinary frequency, then irritable bowel, the painful fingers/toes, hungry during the night, sleep problems, depression, and so much more. His 2 best friends also got this virus and had 2 or 3 weeks of urinary frequency. Then they got better. But my son was sick for years, would get better, but relapse when he caught a cold, etc.

His 2nd cousin got Burkitt's lymphoma about the same time !

The symptoms you describe are also part of the whole Chiari syndrome profile, as is scoliosis, which also runs in our family. I was checked for Chiari by a neurosurgeon. I have a small posterior fossa ( space at back of skull), short clivus, steep angle of the tentorium, but no true Chiari. My cerebellum hangs low, and compromises CSF flow on one side. I have spinal fluid jets in the lower brain and upper skull. So, this situation has been called Chiari O. Read about this, if you haven't heard of it.

 

[Zapped]

Could someone define 'IRIS,' as used in this thread? Is this a technical acronym for the Herxheimer effect? Thanks.

 

[Farmgirl]

I would also like to hear from others what their experience has been in that area.

 

[Farmgirl]

If it were as simple as vaccines, one would think CFS/ME would be more common among children, whereas everything I've read suggest you are more likely to develop CFS/ME at an older age, from late teens and upward with increased likelihood. This better fits the idea that you catch some other bugs on the way as you get older rather than a vaccine being the trigger. Kids also seem to have a better chance of spontaneous recovery than what adults have.

@Hustler That is a fascinating story about your recovery. I would add that another possible explanation is that Raltegravir is from what I've read likely to be antiviral against all herpesviruses (source), and herpesviruses like mono (EBV) are a known trigger for CFS/ME.

Andy Wakefield says Autism is CFS in the young. Also, our immune systems are different at different ages of development....think about the interplay with our hormonal system in ME/CFS.

 

[Vaporization]

Could someone define 'IRIS,' as used in this thread? Is this a technical acronym for the Herxheimer effect? Thanks.

IRIS

 

[Zapped]

IRIS

Thanks. Makes sense to me

 

[Hustler]

The earliest doctors notes from the UK in the 1950's describe the disease in their patients. They are appendixed in the papers published years 1955-1959. Ramsay also back in those days and later on too spoke of a relapsing remitting draining muscle weakness (we can assume with the slightest physical exertion/mental exposure to stimulii) in the affected (which I always describe as/liken to never recovering body strength/mental power after a general anaesthetic for surgery for example).

Ramsay tried to make his criteria clearer 20 and 30 years later. It was always a good intention and a reaction to the psychiatrists rejection of the entity. They would go on to seize that opportunity however, hijack and extend those criteria to the detriment of all.
Ramsay in retrospect should not have tried to lecture the psychiatrists who would use synonyms to then propagate CFS. It wouldn't be about symptoms any more, but about the words invented to very easily wrongly describe them. Therein lies the injustice done to patients. Was it deliberate? I think if you stop listening to patients you do so at your own peril especially when more patients trickle in over the years/decades.
You don't solve that by hiding it or diluting it with the fatigue word ! I never told a doctor I was tired or fatigued. This is about lack of recuperation on any vital activity necessary for living. When you wake up from an anaesthetic after major surgery they leave the curtains closed and restrict visitors. The patient is just too weak, not there, and needs peace n quiet n gentle feeding to recover.
This is real true ME

 

[Hustler]

All is well on my side with Viread (Tenofovir TDF) and Isentress (Raltegravir). Very well indeed. I have a totally normal and full life without all that pain and dread that tortured me previously when I pushed through it and fought it hard. The battle is won. Things are easy now. I am lucky. Very lucky. I am over the survival guilt now too. Even that receeds over time and it can be heavy when it dawns on you how lucky you are to be in full remission.
Most of the people I know are better on ARVs.
Some that I dont know are not responding so I hear. Some that I know of neither too sadly. HOWEVER my understanding is that they can be salvaged and saved with the available newest generation of these meds that penetrate deep such as TAF. Just like those many unfortunate souls with HIV Aids who never respond to classic ARVs and who today are in fact being salvaged/saved by TAF.

 

[Vaporization]

. I am over the survival guilt now too.

I want to make a smart-ass remark about that, such as " Survival Guilt? I'm far too selfish to engage in something like that".

But I only have a glimpse of what it will be to look back on this illness, and already I understand there will be problems adjusting to such a change in life, no matter how desired.

I enjoy hearing about how healthy you are and find it quite inspiring.

 

[Hustler]

The patients call the shots now
The patients alone

Fauci and Lipkin screwed us all over
Their fault


Game on

 

[Abrin]

In a sense, that is the silver lining in getting it when I was young...I am accustomed to feeling bad. Unfortunately. I think it would be really hard to switch from "normal" to ME in a short period of time, especially if you depend on working a job to provide for your needs.
Best to you all!

I totally feel that way too! My father was diagnosed with ME/CFS and I started showing the same symptoms when I was very young.

I have noticed that my friends in their 50s and 60s who are healthy and do not have ME/CFS seem to be in shock that their body doesn't work the way it used to when they were young and it seems to be a hard adjustment for them now.

Since I have felt like I was in an 'old body' my whole life, the adjustment to aging hasn't hit me as hard. That being said, I've definitely noticed it was way easier to deal with ME/CFS symptoms in my youth than it is to deal with them now that I am middle-aged.

 

[Hustler]

It is now becoming apparent that the XMRV negative studies were simply insufficient and the Lipkin study was highly irresponsible.

We are now facing a major public disaster of epic epic epic proportions.

 

[Farmgirl]

It is now becoming apparent that the XMRV negative studies were simply insufficient and the Lipkin study was highly irresponsible.

We are now facing a major public disaster of epic epic epic proportions.

@Hustler Have you watched Judy Mikovits seminar from the Academy of Nutritional Medicine "Lifting the Veil" part 1 & 2? She did such a good job explaining everything. I feel like I have a better handle on what is wrong and why I feel like I am dying. This is most recent one of her lectures that I have watched. It is all so complex, but she is not the only one with this evidence.

@Hustler I have a question for you. Did you take antivirals BEFORE the antiretrovirals? If yes, did they help at all? I don't know if we can afford fancy medicine if the insurance company won't cover it. Right now, my current meds ate $10. I am down with that.

 

[Homina]

Had been ill 20

4th year on them and still on them

Upward progression

Feeling increasingly better

Am now in full remission

Hello I am new here
Exciting news
Can you tell me how old you are approx?
Where did you get your meds?
Can you get them online w/out a prescription?
Thanks

 

[Hustler]

Hello everybody.
No I didn't really take antivirals as I saw they were not doing much quite frankly so gave up on that.
It is antiRETROvirals that hit the target here.
Prepare your lawyers.
Prepare your lawsuits.

This is the End Game.

 

[Lissa]

The CDC began a consistent evaluation of children and autism rates back in 2000. And, during this time of consistent monitoring the rates ( according to their data/evaluation) of Autism kept increasing. Of course, there is always debate on this topic. Just like us!!!

Has chronic fatigue/ FM rates really increased over the past 4-5 decades, or is this not a true increase, just better diagnosis? My husband spoke to Anthony Komaroff about this at the 2009 Reno conference. Dr. Komaroff ( in practice for many decades) said that he saw very few cases of CFS/FM - -and this clearly began in the late 1970s. He then commented that the 'flood gates' opened in the 1980s and 1990s - when he was literally flooded with people having these complex, multiple, unexplainable symptoms.

@Merida this would be a fabulous study/graph/map.......

Rates of autism over time
Rates of ME/CFS over time
Rates of Alzheimers over time
Rates of vaccine injures over time
Rates of ..... insert many others

AND then also look at what else was happening in the 60's & 70's. Building standards changed. Homes became tighter and built with organic materials -- away went the drafty, plaster walls in favor of drywall. I'm sure that the number of homes with AC and HVAC increased as well. All things which contribute to WDB (Water Damaged Buildings). WDB = mold, and often toxic mold, the dangerous stuff.

Symptoms of toxic mold sickness line up with autism, ME/CFS, Fibromyalgia, Parkinsons, MS, ALS, and many other illnesses. (As you said "...flooded with people having these complex, multiple, unexplainable symptoms.") It may depend on genetics as to what version of illness a person gets.

But -- what if you could take this data, and see if each of these diseases also increased in conjunction with the rise in the number of WDB over time? What if toxic mold is the missing link, just like Erik Johnson has been trying to tell us all along!?

Or better yet --- hasn't anyone thought of the geography of it? Couldn't massive weather events be mapped over time? Floods, hurricanes, tidal waves... and what do the disease rates look like (for diseases of interest) in those areas over time? Is there indeed, a correlation?

One could totally expect that there will be a dire increase in mold related illness in the wake of Harvey and Irma. It stands to reason that history would inform us that this has already been happening from other natural disasters in our past.

But because "CIRS" (toxic mold illness) is yet another "shadowy disease", the general public has been kept in the dark by the CDC, NIH, insurance companies who don't want to pay, etc. Nobody is making the connections. (Doesn't THAT sound familiar ME/CFS peeps??!!)

If only I had the mapping software and the actual data to work with..... GAHHHHH. I soooooooo want to know these things. I do think it might be an eye opener!

 

[Farmgirl]

Having tried Valcyte twice, w/o success I am an otherwise semi-informed candidate for your
successful ME protocol.

Assuming these rx's are tablets then the answers to the following are obvious... . Otherwise, for those of us not familiar with these antivirals would you please describe options as to their form and the methodology of protocol, e.g. oral, IV, self injections, or other, and frequency, sic daily; in outpatient setting or home use? I have read the mfrs' data sheets but they could be prescribed off-label, as they apparently were for you.

Also, did you use an infectious disease specialist in the know about ME? I'm baffled as to how you came up with these rx's. IYO, what is the likelihood of positive reception to a request for a trial from an ID-MD; with or w/o having to bring him/her up to speed with appropriate research data?

Thanks, and congratulations from a 30-year 'victim', still struggling.

@Zapped. Do you feel that life is more difficult now that you have been ill these 30 years? I am.

Just got the news today that my Holter monitor test came back with irregularities. I have been having continuous chest pain especially these last 2 years. Bummer. But, I am thinking of all the things I have to be thankful for! First one is that I am not in a hurricane and my home is not flooded.