Article: Emergency at the Emergency Room

You can view the page at http://www.forums.aboutmecfs.org/content.php?83-Emergency-at-the-Emergency-Room

 

I had several ER visits early on in my illness, for fainting and just feeling horrible, like I was poisoned. Luckily I didn't know at the time that I had CFS. They treated me ok, but couldn't do anything for me. Labs, of course, didn't show anything.

I remember one lady asking me why I was twitching and jerking. I said I had no idea, and was wondering why they didn't know. (I later found out it was a severe allergic reaction to chemicals, which also caused the poisoned feeling).

So after that, even though I felt horrible for months from the reaction, I just gutted my way through any symptoms and kept looking for a good doc.

 

They treated me ok, but couldn't do anything for me. Labs, of course, didn't show anything.

Isn't this the problem so many times? They just don't know what to do. Mike was unlucky in a couple of ways. First off he was so ill and two his family doctor later got into the act and told them he was a psychiatric case and not to treat him. That took the insurance company off the case and he was booted out into the streets.

 

This is all too many times happening with the chronic fatigue and also fibromyalgia patients. I know, I suffered with both diseases since the mid 1970's. You feel so isolated and that something is terribly wrong with you, yet not knowing what. At least now, these two disease are finally get some recognition. Although, they have a long way to go in the treatment realm.

I am luckier than most, having AIDS, at least I can easily get medications which makes these two horrible conditions go dormant. To me, the XMRV may pan out because certainly HIV is not causing the symtoms associated with these non-AIDS diseases.

A lot of research/studies will still be necessary before they will achieve an approved drug. In the interim, I would encourage one to contact one's representatives about funding for these types of immune disorders. Also, to stop pumping billions each year into AIDS research, regardless of what one believes causes AIDS, there is plenty of medicines for this problem. Besides, so many more people in this country suffer from other immune diseases besides AIDS!

 

Noreen,

Have you had any contact with others who have had a similar experience as you have regarding AIDS drugs helping the symptoms of fibromyalgia and chronic fatigue syndrome?

You are offering us fascinating firsthand experience. Thank you.

 

No, I can't say that I do because many that I know only have a HIV+ diagnosis and the others with "true" diseases have other issues. Nevertheless, I have two family member who both have fibromyalgia. If I test positive for the virus, then they will also get tested. I feel that it would be easier for them or anyone else for that matter to have a positive test result and try to get the HAART off-label. But I see this as being a long, hard process because so many doctors will want studies done first and may be afraid of lawsuits if something goes wrong. The only light that I can see at the end of the tunnel is that drug companies will be scrambling to come up with the first drug to capitalize on the huge profits. But be rest assured, these new meds will be extremely expensive. For most of my HAART was around $1,400/month. Not saying that the new drug will cost this much, as this is three anti-retrovirals.

4 times I stopped the HAART and each time the old symptoms would come back. However, each time that I restarted the HAART, all the symptoms would go away! I was on 4 different versions of the HAART because they believe in drug resistance and gave me different medicines. Although, years earlier I had a test, which didn't prove any resistance, so they gave me Atripla, this time, which 2 medicines in Atripla, I was on before, (Viread and Sustiva). I belive that what all of these meds have in common is being protease inhibitors and in a combination form.

 

This is all too many times happening with the chronic fatigue and also fibromyalgia patients. I know, I suffered with both diseases since the mid 1970's. You feel so isolated and that something is terribly wrong with you, yet not knowing what. At least now, these two disease are finally get some recognition. Although, they have a long way to go in the treatment realm.

I am luckier than most, having AIDS, at least I can easily get medications which makes these two horrible conditions go dormant. To me, the XMRV may pan out because certainly HIV is not causing the symtoms associated with these non-AIDS diseases.

A lot of research/studies will still be necessary before they will achieve an approved drug. In the interim, I would encourage one to contact one's representatives about funding for these types of immune disorders. Also, to stop pumping billions each year into AIDS research, regardless of what one believes causes AIDS, there is plenty of medicines for this problem. Besides, so many more people in this country suffer from other immune diseases besides AIDS!

HIV causes aids not a belief fact .AIDS kills millions of people fact interesting that you have AIDS,CFS and Fibromyalgia.That is almost unheard of.How did the doctors involved tell the difference? I have never heard of an antiviral reducing the symptoms of FM before.

 

No, I can't say that I do because many that I know only have a HIV+ diagnosis and the others with "true" diseases have other issues. Nevertheless, I have two family member who both have fibromyalgia. If I test positive for the virus, then they will also get tested. I feel that it would be easier for them or anyone else for that matter to have a positive test result and try to get the HAART off-label. But I see this as being a long, hard process because so many doctors will want studies done first and may be afraid of lawsuits if something goes wrong. The only light that I can see at the end of the tunnel is that drug companies will be scrambling to come up with the first drug to capitalize on the huge profits. But be rest assured, these new meds will be extremely expensive. For most of my HAART was around $1,400/month. Not saying that the new drug will cost this much, as this is three anti-retrovirals.

4 times I stopped the HAART and each time the old symptoms would come back. However, each time that I restarted the HAART, all the symptoms would go away! I was on 4 different versions of the HAART because they believe in drug resistance and give me different medicines. Although, years earlier I had a test, which didn't prove any resistance, so they gave me Atripla, this time, which 2 medicines in Atripla, I was on before, ( Viread and Sustiva). I belive that what all of these meds have in common is being protease inhibitors and in a combination form.

sorry I am confused are you saying that HIV+(AIDS) is not a "true" disease

These are some of the side effects of HAART therapy bearing in mind that AIDS is life threatening


A severe or life threatening side-effect (grade 4 adverse-event) was experienced by 675 individuals (11.4 cases per 100 person years), 332 developed an AIDS-defining condition (5.6 cases per 100 person years), and 272 people died (4.6 cases per 100 person years).

The cumulative percentage of patients with a severe or life threatening side-effect at month twelve was 15.6%, at month 24, 23.7% and at month 36, 30.8%. The corresponding percentages for AIDS events were 7.3%, 10.8%, 16.5%, and the percentages for deaths were 3/9%, 7.9% and 13.1%.

HAART clearly has a highly negative risk benefit ratio! this is why doctors insist on clinical trials to try and avoid killing anyone .There is no proof that this therapy will benefit people with an XMRV infection.There is however plenty of proof of life threatening side effects.

 

Well, obviously you don't have all of these diseases. Secondly where are the millions that AIDS has puposely killed, not in the civilized world. AIDS in Africa, thanks to the Bangui Definition, they don't even have to be tested for anything, just have 4 symptoms, which are also indictive of other known diseases that plagues Africa. In fact, the population in Africa has actually grown.

As I have stated in other forums, I had chronic fatigue and fibromylagia long before I had AIDS, which to me was a natural progression onward. In my case, the HAART certainly does reduce these symptoms. In fact, I was always puzzled how it did so, but with the discovery of XMRV, it all makes logical sense because XMRV is a retrovirus, which can cause problems in humans. I believe that a virus may be involved with these two diseases, as when being off the HAART, these diseases always flared up.

 

Yes, one should tread carefully when considering the HAART. Nevertheless, some feel that they have exhausted all other options and I can certainly understand how they feel. What good is being alive when your quality of life sucks everyday? If you watch the videos from WPI and listen to the doctors involved with this discovery or other articles about the treatment, they state that the protease inhibitors of some kind is the treatment plan. Surely, some work has been done in this regard for these researchers to state this.

The following is an article about using anti-retrovirals for the MXRV:
http://www.sciencedaily.com/releases/2010/04/100401173724.htm

The article states that tenofovir was one of the drugs used. All of these medicines have more than one name, I know it by Viread, which I have been on before and it is in Atripla too.

Some information on line suggests that LDN works but I haven't been fortunate enough for this to happen nor has my mother-in-law who takes LDN among other things for her fibromyalgia. Having stated that, everyone is unique and maybe LDN may help some people. It is certainly worth a try because it is a very safe drug.

 

Yes, one should tread carefully when considering the HAART. Nevertheless, some feel that they have exhausted all other options and I can certainly understand how they feel. What good is being alive when your quality of life sucks everyday? If you watch the videos from WPI and listen to the doctors involved with this discovery or other articles about the treatment, they state that the protease inhibitors of some kind is the treatment plan. Surely, some work has been done in this regard for these researchers to state this.

The following is an article about using anti-retrovirals for the MXRV:
http://www.sciencedaily.com/releases/2010/04/100401173724.htm

The article states that tenofovir was one of the drugs used. All of these medicines have more than one name, I know it by Viread, which I have been on before.

Some information on line suggests that LDN works but I haven't been fortunate enough for this to happen nor has my mother-in-law who takes LDN among other things for her fibromyalgia. Having stated that, everyone is unique and maybe LDN may help some people. It is certainly worth a try because it is a very safe drug.

The WPI dont say anything about a treatment plan

This is the risk benefit profile of Tenovir

The most common side effects associated with tenofovir include nausea, vomiting, diarrhea, and asthenia. Less frequent side effects include hepatotoxicity, abdominal pain, and flatulence.[4] Tenofovir has also been implicated in causing renal toxicity, particularly at elevated concentrations.[5]

Tenofovir can cause acute renal failure, Fanconi syndrome, proteinuria, tubular necrosis. These side effects are due to accumulation of drug in proximal tubule. Tenofovir can interact with didanosine by increasing didanosine's concentration. It also decreases the concentration of atazanavir sulfate. Plese add duration of treatemant
[edit] HIV risk reduction

A 2006 trial by Family Health International gave either Viread or a placebo to 936 high-risk women in Cameroon, Ghana and Nigeria. While the results show signs that the Viread group contracted HIV at a reduced rate, the researchers cautioned against drawing conclusions from the study because the sample size was so small.[6] [7]

The paper you mentioned did not show much promise against XMRV in vitro yet alone in vivo

The chances of symptom relief are minimal.The chances of serious side effects are very high.It is not a very safe drug at all

There is no trial evidence for LDN

Anyone taking HAART for any length of time is likely not to do any treading at all! not a price worth paying for a treatment with no proven benefit in ME and questional risk benefit ratio in AIDS itself

 

The decision to take the HAART is best left up to those who suffer. Remember, everyone on these drugs are monitored quite frequently for any problems. Tell the thousands or maybe the millions who take LDN that it doesn't work and they would laugh at you. The reason that there aren't a large number of studies about LDN for various diseases is that usually the drug companies pays the bill for them. And no drug company in their right mind is going to spend the huge sums of money necessary to do so for a generic drug, which the patent has long since expired and they will not get rich on. Remember, LDN is about $23.00 per month plus a small fee for shipping. Let's do the math here, if I were a drug company which drug would I promote, a $23.00 drug or a $1,400 drug? It's a no-brainer!

For those who would like to know how actual users of LDN feel, join the LDN Support Group at Yahoo and get your information, straight from the horses, or the patients mouths!

 

The decision to take the HAART is best left up to those who suffer. Remember, everyone on these drugs are monitored quite frequently for any problems. Tell the thousands or maybe the millions who take LDN that it doesn't work and they would laugh at you. The reason that there aren't a large number of studies about LDN for various diseases is that usually the drug companies pays the bill for them. And no drug company in their right mind is going to spend the huge sums of money necessary to do so for a generic drug, which the patent has long since expired and they will not get rich on. Remember, LDN is about $23.00 per month plus a small fee for shipping. Let's do the math here, if I were a drug company which drug would I promote, a $23.00 drug or a $1,400 drug? It's a no-brainer!

For those who would like to know how actual users of LDN feel, join the LDN Support Group at Yahoo and get your information, straight from the horses, or the patients mouths!

The decision whether to prescribe a drug is best left to doctors who are trained to make complex decisions.If anyone chooses to take a drug combination that could destroy already damaged mitochondria then they deserve facts and not speculation

As for LDN

The only published data on the use of low-dose naltrexone has been in Crohn's disease and irritable bowel syndrome.


These were both open-label pilot studies.

The fact that it is open label indicates that there was no placebo group to compare to, making it impossible to differentiate the effects from a placebo effect.

Also, as in all pilot studies the purpose of these studies is to design a future clinical study and not enough patients are included to be able to determine whether a result is statistically significant (as the range of responses needs to be determined first by a previous pilot study.

It is unlikely that opioid blockade with naltrexone has any effect on the immune system, as none has been demonstrated in the scientific literature in vivo or in live patients.

The proposed mechanisms of LDN on the immune system are self contradictory indicating that it is immunomodulatory when no such evidence exists.

Opioids are immunosuppressive and there is no known effect of lose dose blockade of opioids, nor is there any evidence in the literature that low dose blockade with LDN results in a release of opioids at some later time, not just at a therapeutic dose but also not at any detectable dose at all.

As LDN is a psychotropic drug i,m not suprised that people feel better but there is no objective benefit on any symptom caused by the disease of ME.

No amount of laughter can change that fact

There are a number of ongoing studies on LDN.Pharmaceutical companies can only promote liscensed drugs. To get a liscence there must be evidence of efficacy and safety.LDN has neither--that is the no brainer part

There have in fact allready been a large number of studies looking at the effectiveness of LDN all negative another no brainer

 

For those of you who would like to know about the yahoo LDN support group see the following opening statement on the site.

This group is for people who are currently taking LDN (Low Dose Naltrexone) and for others searching for information about LDN.
Low-Dose Naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.LDN boosts the immune system, activating the body's own natural defenses.


All factually incorrect. LDN has no immunomodulatory properties in live paptents at all apart from potentially being an immunosuppresant

Perhaps it is good for horses mouths in some way but not for anything else!

 

You can believe what you want to but for those of us who take it, we know that it works. My father-in-law had 2 pancreas precancerous lesions shrink because of it, to the amazement of his doctors. He was told that he needed immediate surgery. This was over 2 1/2 year ago. He is doing just fine.

Go to lowdosenaltrexone.org and watch the video of the lady from Florida, who has MS. I wrote the story in my hometown newspaper about LDN. She was visiting from Florida and took it back to her doctor. At first, he wouldn't give it to her. Her brother died from MS at 42 and she was going downhill, following in his footsteps. Finally, her physician gave it to her. She can type again and can now walk with the aid of a walker. Try telling this lady that it doesn't work. You apparently, haven't been nor spoken at the LDN conferences. For your information, LDN works by increasing one's endorphin levels in the brain, thus allowing the body to fight off invaders. There is none so blind that will not see!

 

You can believe what you want to but for those of us who take it, we know that it works. My father-in-law had 2 pancreas precancerous lesions shrink because of it, to the amazement of his doctors. He was told that he needed immediate surgery. This was over 2 1/2 year ago. He is doing just fine.

Go to lowdosenaltrexone.org and watch the video of the lady from Florida, who has MS. I wrote the story in my hometown newspaper about LDN. She was visiting from Florida and took it back to her doctor. At first, he wouldn't give it to her. Her brother died from MS at 42 and she was going downhill, following in his footsteps. Finally, her physician gave it to her. She can type again and can now walk with the aid of a walker. Try telling this lady that it doesn't work. You apparently, haven't been nor spoken at the LDN conferences. For your information, LDN works by increasing one's endorphin levels in the brain, thus allowing the body to fight off invaders. There is none so blind that will not see!

no there certainly none so blind they cannot see.One video is not evidence.MS, which is not ME by the way can have patterns of flare up and remission..I,m sure you wrote a story.For your information LDN has no effect positive effect on the immune system whatsover



Facts can sometimes improve a patients "vision" Here are a couple

The evidence of an interaction of endorphins to the immune system is limited and it is likely that endorphins are only a minor player in the immune system.

The most cited literature is indeed not how endorphins modify the immune system, but rather the reverse.

Specifically, during infection, when the immune system is elevated endorphins may be released, not to affect the immune system but to modulate feelings of pain and discomfort.

Rather than endorphins modifying the immune system the major effects are in the opposite direction and well known in common experience. t

I trust that things appear a little clearer now

 

Then I guess that my father-in-laws tumors shrinking, the lady walking again, the MS patients who go in remission, all the other good reports, and my personal experience with LDN, it must be all in our heads! Maybe you should go to YouTube and listen to what doctors have to say about it. Why don't you contact Dr. Zagon and tell him your thoughts on the matter, but then you wouldn't even know who he is in the first place. You are misinformed, as usual!

I am placing you on my ignore list because you don't seem to know what your are talking about and just want to give people a hard time. Some people here want help and answers, which doesn't seem to apply to you.

 

Then I guess that my father-in-laws tumors shrinking, the lady walking again, the MS patients who go in remission, all the other good reports, and my personal experience with LDN, it must be all in our heads! Maybe you should go to YouTube and listen to what doctors have to say about it. Again, you are misinformed, as usual!

I could not possibly comment about what goes on in your head. Your guess could well be correct on this occasion at least.Guesswork does work occassionally.It is not a reliable method to base conclusions on however!

Maybe you should try using facts and not relying soley on anecdotes.

The connection between the use of anecdotes and producing misinformation is clearly established and I,m sure you would not want to be associated with that practice