Check Out This Research

[juliegee]

Hey All-

I just stumbled upon a research study that actually offers a CURE for CFS/dysautonomia. I'm very intrigued. It suggests that CFS is the result of an ongoing infection with either Epstein-Barr (EBV), or Cytomegalovirus (HCMV), or a combination of both. It goes on to suggest that IF this is NOT treated heart damage will result. Treatment with an anti-viral medication apparently has substantially reduced symptoms and/or CURED patients.

I know the first part of this theory is old news, but in it's entirety THIS IS MIND BLOWING TO ME I jut had testing done that shows I have a VERY HIGH antibody to HCMV. Additionally, a recent echo shows diastolic dysfunction, the first stage of heart failure. THIS IS THE EXACT DEFECT described- a problem with the contraction of the heart wall, affecting the left ventricle.

Coincidence? I think not. How to proceed? I have a routine appt. with my allergist/immunologist. I may drop a copy of this research off beforehand & request an extra long appt. This doc is formerly from Mayo in MN, very compentent- I just HOPE he'll help and not pass the buck. The treatment seems pretty simple & straight forward.

I know this affects MANY here. My first link is a summary of the study. The second is the study in it's entirety. Tell me what you think.

http://www.treatmentcenterforcfs.com/FAQ/index.html

http://www.treatmentcenterforcfs.com/FAQ/documents/Dr.A.MartinLerner-Subset-directed-antiviral-treatment-of-142-herpesvirus-patients-with-CFS.pdf

Thanks in advance for your input-

Julie

[lieze]

I think it's worth pursuing Julie.

If he doesn't have any ideas with what to do with this maybe don't stop with him-keep pursuing it.

I'm not sure how getting treated could hurt you.

It will either eliminate the virus or it won't.

Maybe it will help knock it down enough that your own immune system can kick in and destroy it.

I think it's worth a shot.

I pursued treatment as soon as I found out I had chicken pox and hit a brick wall. They said I was already half way through it and it would make no difference. Well after I had excruciating neck pain and wondered if I had developed encephalitis. For a fact after I was in viral syndrome and I had one doctor indicate that yes he thought an antiviral would have helped in fact the physicians assistant that saw me first was thinking antiviral and the ER doctor told him no that I was already through the incubation period and it would make no difference.

Now we don't know. If I would have had similar outcome knowing me I might have blamed it on the medication, but I went seeking treatment and was sent home empty handed.

Same with West Nile Virus. They sent me home empty handed and told me I'd either live or die. Told me to drink plenty of fluids and get a lot of rest. I'm not sure I really agree with these answers that I got and in the future I think I would get a second opinion.

[juliegee]

Lieze,

The indifference of your doctors makes me sad:-( I feel a sense of urgency with my heart beginning to fail & I have a sense I need to act NOW.

I looked into Dr. Lerner's reputation via Pheonix Rising- a very reputable CFS site. It seems GOOD from what I was able to find. He was referred to as a top doc in the field. Many patients there taking the anti-virals with more success than not. Finding the right one, the right dosage, and the right length of time for treatment seems to be the trick. I worry that I will have a problem tolerating the treatment with my MCAD...

I may call Dr. Lerner's office on Monday to see how long a wait to see him will be. He's right outside of Detroit. I am originally from MI & familiar with the area

Julie

[yuliya]

Does study mention anything about people with POTS that didn't start out as a viral infections, such as people born with it? I'm not very good at reading scientific studies and understanding them.

[juliegee]

yuliya-

I'm not good at reading medical research either. Seems like I have to look up every other word. Sigh

As far as knowing the exact onset of POTS, it's tricky. I have NO idea when I was first infected with CVM- never knew I had it till I got the test result. I've also had POTS symptoms throughout most of my life. My son has an exact date that he became sick, but like me, he's also had hints of his dysautonmia since birth. I suspect that this doctor is recommending having the testing done to see IF you have (or have had) an EBV or CVM infection. Apparently, in some of us, these infections become chronic.

All the best-

Julie

[lieze]

I was very scared in the beginning Julie and really was thinking adrenal glands. I was so depressed with everyone's lack of concern including my parents who I was staying with at the time due to our mold problem.

I was collapsing with the POTS episodes and feeling the adrenaline surges and I was convinced I would die if something didn't happen to stop this.

My course of illness has been very confusing very.

I did get worse weaker after the ablation.

It really took it out of me and the POTS symptoms seemed to really increase after that. Up until that point yes I was dealing with it but I was trying to wander around being normal and was taken more by surprise when I would be hit with another issue. I think I was stronger at that point. Not as debilitated so I was able to go on and I did work then with the first incident being at the end of Dec of '08 clear up until that October 09 when I just gave up and saw I was not getting better.

In that interim I have done a little better at times so I did not pursue getting tested for my ever changing symptoms.

I do almost wish there was one doctor I could have gone to that was knowledgable to help me with everything but I just felt a bit self conscious for bothering them #1 and I kept hearing with my symptoms that it was nothing to worry about-not life threatening at every turn which really did not help the physical turmoil I was going through.

I am thinking differently now since this hasn't all just gone away and I look back to those very first days of say when I had to walk all the way down the hall to take a bp of a dying lady and I couldn't see straight by the time I got down there. I ended up leaving the room and leaving for the day and by the time I was driving out felt a little better but why didn't I say hey this is not normal-someone needs to find out what is wrong with me?

In all fairness my family doctor did want to order a TTT and I was so traumatized yet from the ablation and how weak it made me after I was just not ready for any more tests. I was fearful I would die on the table. Same with the adrenal function test and the thyroid function test. I did not go through with either that a local endo ordered for me. My thyroid levels have always been normal.

I stayed in a state of partial denial hoping that I am one in the group that will recover or regain partial activity in several years and just not sure where to begin. Also my role as a mother of 4 children just wears me out, when do I have time to pursue researching my own medical condition and what if there is no cure.

My pulse and blood pressure have improved for the most part in that time and are normal most of the time but my activity is highly compromised.

I almost felt like it was important to establish a norm and then work from there if possible.

So why I was so passive and accepted this just not knowing and no real treatment I don't know I think I was too weak to pursue it and totally overwhelmed still trying to be partially active with working part time and trying to take care of my family.

I did try beta blockers but my blood pressures were just too low to tolerate them. Developed a rash when trying zoloft. So I felt like meds were kind of a mixed bag and my cardiologist did tell me that an antiarrhythmic in my case was more dangerous than the arrhythmia itself-so I didn't want to further harm myself by trying to fix something that was self correcting.

So it seemed as if I had no alternatives but to just stick it out and try to do what I could naturally to give my body that chance to heal and get better and see what happened.

I do fear in my case that trying to just ignore symptoms and operate at high heart levels could be damaging in the long run so I have chosen a life of decreased activity maybe working only one or two days per month.

I would have high heart rates during that time but since it was for a limited time felt it was similar to a work out. Something you wouldn't want to do 24 hours a day but okay for a set amount of time.

I often curiously felt better after this. I would sometimes reach a point in the night where my body was highly stressed but it would break through and I would find more energy and vital signs would stabilize. It was a quite interesting experience and I would feel invigorated the next day.

I guess we each take our own paths and do what we can and it doesn't help to go back and beat ourselves up.

If I could go back in time at all I would have avoided both West Nile and the chicken pox which I feel really led me to this sick state that I am in now.

I'm not sure being around sick people with my own frailties is the best situation for me but I couldn't know that. It was a life long dream to be a nurse and I was able to do that-I am glad.

I guess there are much worse diseases I could have contracted on the job and I should consider myself blessed.

I do not blame you Julie one bit for utilizing your resources and doing what you can right now to try to help yourself. In the process you are helping many others at the same time and others can benefit from both your research and experience.

I say go for it!

Follow your gut and take your findings to a doctor and ask if they think it would benefit you.

[yuliya]

Thanks Julie for the explination

[Sallysblooms]

I have had CFS for 18-19 years. I got POTS two years ago. My doctor hasn't seen antivirals work very well for long periods of time. She helps me strengthen my immune system. I get blood tests for a lot of things twice a year, including Epstein Barr. I am a member of Phoenix Rising also. I have made a lot of improvement with my CFS since I have started a new schedule of supplements. I just hope the stupid POTS can keep improving. Thankfully I am much better than I was.

[juliegee]

Hi Sally-

So you have positive antibodies for EBV? Sounds like you haven't tried antivirals... yet she checks your EBV numbers to see if they're changed? Tell me, how does she help you strengthen your immune system? I ask as I have intermittent leokopenia & hypogammaglubinemia.

Sorry you are dealing with CFS too.

Thanks for your help-

Julie

[Sallysblooms]

Yes, I have Epstein Barr. I have not used antivirals. My doctor said she has used them with some people and they feel better and then have a relapse that is worse. She knows I would do badly. I have lots of trouble with medicine.

Everyone is different however. Antivirals might help some people.

She has me taking Maitake Mushroom drops, Proboost Thymic Protein A powder. (Comes in little packets) also a very expensive mushroom supplement called AHCC plus. You can google it all.

Also, I support my body with many supplements like vit E, C, Dribose (SO good for CFS) CoQ10, liquid carnitine, a very good multi, and a lot more. We are making my body as strong as possible.

I am guided by my doctors on the brands and dosages. I take my supplements three times a day. I take blood tests twice a year. I had VERY low b12, that is very good now. VERY LOW Vit D and that is better now. Still needs to be better.

[juliegee]

Thank you for sharing your regimen. Supporting your immune system is very important- so wonderful that your doc is guiding you in this.

I have been reading & reading. This research suggests that the longer the CMV (or EBV) goes untreated the more damage it does to the heart. Despite the fact that I have NO risk factors & take very good care of myself, I have just learned that I am displaying the exact same heart defect described. For THAT reason, i am going to try to pursue antiviral therapy BUT (like you) I am very sensitive to meds & understand that I may not be able to tolerate it.

Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.

Continuing the CFS cardiac focus, 11 CFS patients were studied using the cardiac nuclear medicine MUGA test which measures muscle strength of the heart. Abnormal cardiac wall motion at rest and stress, dilation of the left ventricle and segmental wall motion abnormalities were observed. The cardiac abnormal dynamics worsen as CFS continues.

[Sallysblooms]

I hope it works great for you!

[Dizzysillyak]

Hi Mack's Mom,

I have CFS, at least 3 viruses including EBV and a heart problem too ... Antivirals are something I've been wondering about. Meanwhile, Even though I have these viruses and haven't treated them, my body is getting better via diet and supplements.

I googled your heart condition and found this ...

http://heartdisease.about.com/od/livingwithheartfailure/a/diastolic_HF.htm

What Are the Causes of Diastolic Dysfunction?

The major causes of diastolic dysfunction include:

chronic high blood presssure

hypertrophic cardiomyopathy

aortic stenosis

coronary artery disease

restrictive cardiomyopathy (a rare condition in which the heart muscle is infiltrated, and made stiff, by abnormal cells, protein, or scar tissue. The most common cause of restrictive cardiomyopathy is amyloidosis, a disease in which protein-like substance is deposited within the body's tissues. Other causes include sarcoidosis and hemochromatosis.)

aging (Whether age alone causes stiffening of the ventricles, or whether such stiffening is related to some other definable medical condition, is not yet worked out.)

I could be wrong, but would an an anti inflammatory diet help ? Or maybe some healthy fats like omega 3s ...

good luck with this ...

tc ... dizzy

[Dizzysillyak]

oops my bad ... lol ... it's past my bedtime ...

I forgot to say that I've been taking Virastop once a day most of the time for 4 ? years now. Recently, I stopped taking it and my OI got so bad that I could barely stand up. Within no time after restarting it I was back to my normal OI ... I need to try taking this more often during the day to see if it helps.

This supplement is supposed to break up the walls of viruses ...

sorry about that ... dizzy

[juliegee]

Hey Dizzy-

Sorry you're dealing with this too. (I suspect many here are-whether they know it or not ) I really appreciate your input. I will ask my doc about the Virastop. Where do you get it? What heart problems are you having?

I already do an anti-inflammatory diet and lifestyle . I've even started taking my turmeric again (anti-inflammatory properties similar to steroids!) And, I am at a high level of functioning compared to many here. I can exercize. I run about 15 miles a week & do yoga. My biggest problem is fatigue and stamina- especially later in the day. But still, with all of my efforts- my heart is in stage one failure & I may have pulmonary arterial hypertension (some studies suggest that CMV may also be related to that in immunocompromised patients- me.)

I guess I'm pursing this because my organs are failing & an underlying chronic CVM infection MAY be the cause.

Thanks for your hep-

Julie

[Dizzysillyak]

Hi Julie,

I have a left bundle branch block. I'm not sure when it showed up because I don't remember having an abnormal EKG until about 5 years ago. I've been sick since 1990 and too wiped out to keep track of these things ... I've had extensive heart testing and my cardiologist said that this was all that was going on. KOW ... I get winded extremely easily most days though so I may need to go back.

I get my Virastop from my local HFS but you can get it on the web too. Vitacost has it. My integrative doc recommended it to me and I think it was for all the viruses, etc that I have. And I'm not sure why but this supplement is helping me sleep at night too as long as I haven't encountered any gluten. I was taking 5HTP but I forgot it one night and discovered that Virastop did the same thing for me. I get a deeper sleep with the 5HTP but it also leaves me hung over the next day and this doesn't. I suspect that it's breaking up the proteins I need for sleep into the sleep aminos.

I get fatigue later in the day too but it's better than being fatigued all day so I'm ok with it. For some reason, I thought this was normal and that's why some people take afternoon naps ... lol ...

Good to hear you're already on an anti inflammatory diet. I remember reading now that you'd restarted the tumeric. Do you think it helps you because you have an infection of some sort ? I say that because, I discovered that AZO with probiotics cleared up my urinary issues by taking 2 twice a day for several weeks. I take 2 once a day every few days now to keep it cleared up ... I was never diagnosed with UTIs but since this works, I must keep getting one. I really need to run this past my doc ... lol .. Sounds like you're experiencing something similiar.

I'm sorry to hear that you're having heart problems. Hopefully either the Virastop or other antiviral will help you. tc ... dizzy

[icesktr189]

Hi there!

I had 2 postive tests for EBV this year and part of last. I think that turn my POTS into a flare. Unfortunately I tried the anti virals meds and I still have CFS. One was valtrex and I forgot the others name. They did help in the beginning with the sore throats and swollen lymphnodes, but did nothing for the fatigue and dizziness.

I hope they do more for you! My doctor told me the best time to take them is in the very beginning of EBV.

[juliegee]

Sorry to hear that, Dani. Were your EBV infections current ones or old ones? Do you know? Your doctor is right, anti-virals are more effective at the beginning of a virus. BUT, there is another school of thought that describes CFS as a chronic mono (caused by either EBV or CVM or both) that repeatedly reactivates due to a compromised immune system- weakened by the repeated attacks from the virus(es) themselves. If left unchecked, these doctors contend, the virus(es) can ultimately weaken various organs- namely the heart leading to heart failure. Larsen (and others)are having success treating these latent infections with anti-virals at higher doses for long periods of time.

I just remembered that you have some serious heart issues too. I hope you share this research with your doctor. My guess is that you may not have taken the anti-virals for a long enough period or maybe at a high enough dosage. I have heard of patients that end up taking them for years before they eradicate the virus, reverse heart damage, and return to a higher level of functioning.

Best of luck with your disability case tomorrow. I'm crossing my fingers and toes

Julie

[juliegee]

Hmmm, Dizzy. I just looked up your heart condition. It is described as having an inappropriate T Wave- sounds just like what Dr. Lerner described Check out the links at the top of this thread. I wonder if anti-virals could ultimately help your heart stuff too???

Hugs-

Julie

[nmorgen]

Hi Julie,

I think this sounds very interesting. Please keep us updated on what happens with you. If you have good results with talking your dr into testing and maybe trying this I think I will do the same.

[icesktr189]

Let me know how it goes and if it helps! Mine was a new infection I had when I was. 7 months pregnant. If I over due it or get run down, I get fevers and sore throats. I feel that the EBV is causing my POTS flare.

Ugh yes! Still looking to see if I have PAH. One doctor is passing it off saying that it was an echo, so it could have just been mildly hypertensive that one time. Obviously I hope it is, but I'm not going to take a chance so I'm finding a new doctor. (Ugh never ending process! Lol)

I forgot to mention looking into grapefruit seed extract while you are waiting for your anti vitals. The stuff is awesome for viruses. BUT just a warning .... go VERY slow with anti vitals and the GSE... you will have the die off period, and I felt like death the first couple weeks. Turned into a POTS flare.

Good luck! Just because it did not cure me, I am much better than I was before. Also look into LDN. I know tons of CFS patients that it worked wonders for! And thank you!

[Dizzysillyak]

Thanks for starting this thread ... I totally forgot to ask my doc about this today.

I did a little more research though and found this article on Herpes and Alzheimers. It's by Dr Perlmutter ...

http://www.huffingtonpost.com/dr-david-perlmutter-md/alzheimers-herpes-could-be-a-cause_b_814047.html

Last week an advisory committee to the Food and Drug Administration unanimously recommended the approval of a diagnostic brain scan for Alzheimer's disease. The new technology is based upon imaging and quantifying the amount of a specific protein, beta amyloid, in the brains of patients suspected of having the disease. Research has demonstrated a striking correlation between the amount of beta amyloid in the brain and the degree of cognitive impairment in Alzheimer's patients.

Dr. Norman Foster, professor of neurology at the University of Utah, testified before the FDA committee and was quoted in The New York Times stating the approval of the new scan "would be a historic advance in neurology and in the daily management of patients with memory complaints," an interesting comment as the article goes on to say, "If a person has Alzheimer's though, there is as yet no treatment that can slow or reverse the disease ... "

Over the past several decades, the understanding of beta amyloid's role as a causative agent for Alzheimer's disease has served to underpin worldwide research in attempt to develop meaningful treatments designed to rid the brain of this damaging protein. Interestingly, these attempts have met with almost universal failure.

Most recently, pharmaceutical giant Eli Lilly announced yet another failure in an attempt to chemically reduce beta amyloid in humans.

In an August 17, 2010 press release the company noted that their experimental drug semagacestat, an "oral agent designed to reduce the body's production of amyloid beta plaques, which scientists believe play an important role in causing Alzheimer's disease," actually caused more rapid decline in Alzheimer's patients. The company revealed that patients treated with the experimental drug "worsened to a significantly greater degree than those treated with placebo."

If beta amyloid were the cause of Alzheimer's disease, then why would ridding the brain of this protein actually cause patients to worsen? Harvard researcher Dr. Stephanie Soscia and her associates may have the answer. Their recently published research questioned why beta amyloid accumulates in the Alzheimer's brain in the first place, and concluded that in fact, the protein actually serves to rid the brain of a variety of bacteria and viruses. They described beta amyloid as an "antimicrobial peptide" which accumulated in response to an infectious agent.

Their work looks upon beta amyloid in a new light as they stated, "If the normal function of beta amyloid is to function as an antimicrobial peptide, then an absence of the peptide may result in increased vulnerability to infection."

Rather than causing the disease, beta amyloid may be our brain's natural response to an infectious agent, accumulating as a way of defending us against a pathogen. So perhaps we should reconsider beta amyloid since it has been said that "the enemy of my enemy is my friend."

Assuming beta amyloid is produced in response to an infectious agent, logically we would want to examine the evidence supporting the role of infection in Alzheimer's disease. Over the past several years, compelling evidence has surfaced linking herpes simplex virus type 1 (HSV1) to Alzheimer's disease.

In 2008, Canadian researchers Luc Letenneur and Karine Peres demonstrated a dramatic increase in antibodies directed against HSV1 in Alzheimer's patients compared to age-matched individuals without the disease.

Professor Ruth Itzhaki from the University of Manchester has explored the relationship of HSV1 to Alzheimer's disease in great depth.

In her landmark article published in 2008 entitled "Herpes Simplex Virus Type 1 in Alzheimer's disease: The Enemy Within," Dr. Itzhaki revealed that HSV1 infects the brains of 90 percent of adults.

If HSV1 causes Alzheimer's, this high rate of infection would be a necessary characteristic in light of the very high prevalence of Alzheimer's disease. Further, she points out, HSV1 can remain latent in the nervous system lifelong and may undergo periodic reactivation causing persistent brain inflammation.

As an example, HSV1 is the cause of recurrent fever blisters that occur when the virus gets activated in the brain. Undoubtedly the most compelling evidence linking HSV1 to Alzheimer's disease comes from her recent discovery of HSV1 DNA actually located exactly within the beta amyloid plaque, the so-called "hallmark" of the disease.

So compelling are these findings that Dr. Itzhaki has concluded, "Our present data suggest that this virus is a major cause of amyloid plaques and hence probably a significant etiological factor in Alzheimer's disease. They point to the usage of antiviral agents to treat the disease and possibly of vaccination to prevent it."

The FDA's likely approval of technology allowing the quantification of beta amyloid in suspected Alzheimer's patients will clearly provide a valuable tool in defining the cause of dementia in cognitively impaired individuals.

But focusing on ridding the brain of this protein may be treating the smoke while ignoring the fire. Indeed, the evidence now suggests that beta amyloid protein may very well represent a positive response in the brain's attempt to deal with a viral infection.

Proving the role of HSV1 in Alzheimer's disease could be as simple as treating a group of patients with readily available antiviral medication. Dr. Itzhaki recently sent me an email indicating she stands ready to get this research underway, but as is so often the case, funding the study remains a challenge.

[Dizzysillyak]

http://dogtorj.com/?page_id=284

Not to scare anyone but Dogtorj has some interesting thoughts on how viruses and glutamates damage our immune system. IMHO, his writings are wordy but definitely worth the time and relatively easy to read. I'm not educated enough to have an opinion one way or the other here ...

In another one of his articles, he states that allergies are the first warning that our bodies us when something is wrong .. next it's autoimmune diseases ... and lastly cancer ... He also states that many cancers are due to viruses ... Now I want to read up on how to avoid / beat cancer ... FWIW. I had level 4 melanoma in 1998 and have been clear ever since. KOW ...

tc ... dizzy

[nmorgen]

Hi Julie,

I haven't had any test in recent years for EBV, but I had mono almost every year when I was younger.

I read(I'm not sure where, I'll have to find it) that some researchers are thinking that the flu is caused by vit D defficiency. Maybe, our vit D defficiencies are causing the viruses to reactivate in our systems. It seems like almost all of us have very low vit D levels. Whether we are dys POTs or hyper POTs, we all seem to have that in common.

[lieze]

This is going to sound a bit corny but I worked on an alzheimer unit and many of our patients had fever blisters, outbreaks of shingles, and outbreak of blisters.

Totally interesting that they are linking the herpes virus to alzheimers.