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Adrienne Dellwo

Antiviral Protocol for Chronic Fatigue Syndrome

By October 21, 2009

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Dr. A. Martin Lerner: Treating Chronic Fatigue Syndrome

For years, certain viruses have had the attention of chronic fatigue syndrome (CFS or ME/CFS) researchers. None has been completely accepted as being behind the condition, or a subset of it, but that hasn't stopped some doctors from moving forward with the information. One of those doctors is Dr. A. Martin Lerner, an infectious disease specialist who successfully treated his own case of ME/CFS 20 years ago.

Over the last 2 decades, Dr. Lerner has treated and tested scores of ME/CFS patients. He says he's discovered that 3 main viruses are associated with the condition: Epstein-Barr (EBV), human herpes virus 6 (HHV6) and human cytomegalovirus (CMV or HCMV). In his experience, people can have either one of these viruses or a combination of them. On top of that, he says he's identified a subgroup of people who have Lyme disease on top of these viruses, and that this is the harder group to treat.

That's the really important part here -- treatment. Dr. Lerner claims he's had a lot of success treating people with two antiviral drugs:

  1. Valacyclovir, for EBV
  2. Valganciclovir, for HHV6 and CMV

I recently wrote about Dr. Lerner's Energy Index Point Score (EIPS), which is a universal evaluation tool he believes other doctors should use for ME/CFS patients. It ranks the severity of your illness on a 0-10 scale, and gives you and your doctor a concrete way to track your progress. He says once people are on the proper treatment, they can and do move up the chart.

Dr. Lerner has done some clinical trials of these drugs but says larger studies need to be done. Here's some of his published work:

A longer-term study is awaiting publication. If you want your doctor to learn more about Dr. Lerner's work, here's a summary of his published ME/CFS work from his website: Dr. Lerner's ME/CFS Publications.

What does Dr. Lerner think about the recent XMRV studies, and about Ampligen? That's coming up soon. I'll also be writing about Dr. Lerner's views on the heart and exertion in ME/CFS.

What do you think of Dr. Lerner's work? Have you taken either of the antivirals he recommends? Have you tested positive for EBV, HHV6 or CMV? Share your experience by leaving a comment below!

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Comments
October 21, 2009 at 4:09 pm
(1) Jenny says:

I have tried both Valtrex and Acyclovir. The Valtrex made me so ill it was not worth taking (violent vommiting). I didn’t have any side effects with Acyclovir but did not notice any improvement either.

October 22, 2009 at 3:01 pm
(2) Allie Gill says:

I show viral loads to EBV, HHV6 and CMV. Twenty years ago, my Dr. kept me on acyclovir, which seemed to work relatively well. Now that I’m living in a different part of the country and my PCP doesn’t treat CFS, I’m not on anything. Two years ago, an immunologist/genetics research doc found that I have a genetic immune deficiency (hypogammaglobulinemia). I’ve been on IgG infusions for two years and though they’ve reduced the number of bacterial infections, I still get quite a few viruses. I also exhibit heart palpitations and irregularities severe enough to require insertion of a heart monitor. Stress tests are now done using a chemical so that I don’t crash after the typical stress test using a tread mill.

Antivirals – or any viable treatment for CFS would be great, but I think we need a diagnostic tool to prove patients have CFS so we can get treatment. What happened to the muscle studies that were done by a physical therapy group who noticed that CFS patients were unable to perform the stress test two days in a row? One 5-minute stress test on a tread mill keeps me in bed for two or three days – interesting that the chemical stress test does not seem to affect me in any undesirable way. ~~Allie

October 31, 2009 at 6:53 pm
(3) Andrew Porter says:

I have been successfully treated for Human Herpes Virus 6 and Varicella Zoster, two reactivated childhood Herpes group viral pathogens, both detected following a diagnosis of M.E. As for XMRV related virus, this may be possible, but unlikely in my case because the transmission method is not something that I have been exposed to but, and this may hold some significance, I do have a chronic Streptococcal bacterial infection, as shown through repeated blood tests. This means that even though I associate the onset of my M.E. with a tonsillectomy and subsequent throat infection, there are some people who develop a bio film protected bacterial pathogen. This means a stalemate condition between immune system and pathogen, poor protection against normally dormant Herpes pathogens, therefore, my reactivated Herpes pathogens, when cured, did not relieve my symptoms.

The next step is the lengthy process of removing the Streptococcal pathogen, to see if I then become symptom free. If not, then testing for XMRV related virus becomes appropriate. It is, if you like, remove one fault at a time so that you fully understand the disease and its underlying true cause, so that effective tests and treatments can emerge.

November 10, 2009 at 7:36 am
(4) Amy says:

I am a patient of Dr. Lerners about to start treatment on Valcyte for HHV-6. I’ve been through several doctors trying to fight CFS, and I’ve had so many tests that when I got to Dr. Lerner I thought, “What else could he possibly test me for?” After an unbelieveable month of testing (some repeats of earlier tests, many new) where he ruled out any other cause of the crushing fatigue and other symptoms, he was able to pinpoint the cause as HHV-6 and recommend Valcyte.

According to Dr. Lerner, I may feel worse the first two weeks of treatment. According to some patients, I may feel much, much worse. We have two small boys, so I’m postponing beginning treatment for a couple of weeks until we can arrange some extra help at home.

I have to admit, I’m skeptical. Since I also had a case of mono earlier last year, I’m wondering if HHV-6 is just another reactivated virus and not the root cause. I’m hoping the treatment will work, but I’m scared of the side effects (and long-term effects). If anyone wants to follow along, I’m blogging throughout my experience with Dr. Lerner at http://www.darinamy.com.

October 29, 2011 at 5:07 am
(5) David says:

Hi, Amy the link to the blog on your experience with Dr Lerner is broken. I would love to here how you got on? I have suffered from ME for over 20 years now myself. It’s difficult to find comments from someone that were written both before and after treatment. I suspect that because your link is not working then your treatment was unsuccessful, although for your sake, I hope not.

December 23, 2009 at 7:16 pm
(6) Brent says:

I starting having low energy about 3 years ago and found out a year and half ago that I had high titers of EBV, HHV-6, and Parvo Virus. My doctor at that time told me about Valcyte and I decided against it, but now I am considering it as I have tried many other things and still haven’t significantly improved, including going gluten and dairy free and getting rid of a parasite. Amy, I am very interested to hear how it goes as this is the last thing I can think of to try. Thanks!!

December 27, 2009 at 8:05 am
(7) Kathy says:

As a long-time CFIDS, and a who-knows-how-long FMS and ME sufferer who is almost completely debilitated (meaning that I cannot shower/bathe most days of the week, cannot brush my teeth or do basic grooming or even dress myself and go out; I also am unable to properly nourish myself because I cannot prepare food for myself and have no strength to eat or shop), I have been prescribed both Valacyclovir and Valganciclovir, both of which seemed to initially improve my symptoms and both of which, like just about everything else I have been treated with over the years, either stopped working or left my immune system wide open to bizarre rashes and other strange side effects. Tests in the past showed I have/had very high titers to CMB, EBV, HHV6, tumor necrosis factor, and a slew of other viruses, including Lyme disease, for which I am not and have never been treated (yes, I sleep with dogs, as I have always had dogs) due to the doctors saying the test results in so many “false positives”. Yet soon I see I will wind up in a care home if I don’t wind up dead from starvation and lack of fluids. There is only so much the medical community can do when one has no help from family or “friends”, can get no help and is constantly barraged with stressors beyond one’s control (the auto repair shop, for example, over five different trips has been unable to repair one issue, and one’s heat has broken down and the repair company has been out several times and still can’t fix that either), I don’t think any amount of medication or rest can result in improvement. At this point in time, I feel that those of us with CFIDS must not, and I know many will disagree with me, not procreate and pass on our faulty genes (I am childless), because it seems to me that the only people on the planet who can afford, literally to be this sick and have hope of recovery are those who are independently wealthy and perhaps have independently wealthy friends and family members. There was one point in my life when I was getting treated at a place called the Fibromyalgia & Fatigue Centers in Nevada, and it seemed that getting immunoglobulin injections and/or low dose cortisol was helping me, but they don’t take Medicare, my only insurance, and once I spent all my savings, $10,000, I could no longer afford to keep up with the protocol. Since then, I have gone so far downhill, it was pointless to even go there except to learn that there are many things wrong with me I cannot correct and that the treatments that may help me are not treatments any physicians in my state of residency — Arizona (in a suburb of the Phoenix area) — offer. Truly, I expect to die of this illness as I grow worse and worse with each passing month. It’s like being shot with bullets after you’re already dead.

January 3, 2010 at 6:34 pm
(8) steve says:

I have been seeing Dr Lerner for 9 months. I have been on Valcyte and Valtrex. I really see no difference. I hold little hope in medicine, as i see it as a field that does not submit to quantitative analysis. I have a host of issues, to name 2: How can any doctor say that all other “Viruuses have been ruled out?”. With an unlimited number of viruses (say1,000-half of which have not yet been discovered) as well as a host of known and unknown bacterial , fungii and interactions to all the above, testing for half a dozen pathnogens is absurd. Also, the energy point index score is nonsensical. It is based on the faulty premise that output equals severity of disease. I was deathly ill 20 years ago and vomited every day. Yet, out of neccesity, I worked out every day and went out in the evenings. By Lerner’s scale, I would have been “9″, when I was at at my worst.

January 3, 2010 at 6:45 pm
(9) Steve says:

Almost forgot: I still think that HHV6 is a secondary infection, I am not convinced it is the orgin of the problem. One must differentiate cause from effect.

January 10, 2010 at 4:25 pm
(10) SueAnn* says:

This article is appreciated because it gives some information, but the drugs are not available to those with no insurance or money. Further, I’m glad to read other’s stories so I know I’m not alone. Even so, I am amazed, but too weak to get emotional about it. Six months ago, my doctor clinically diagnosed me with CFS and promptly bowed out of therapy because I didn’t have enough money to continue making the high payments he wanted each month. When he parted with me, I would have appreciated him suggesting a book or website that could have led me to the answers I’m finally getting now. (Is it too late? I hope not, but my symptoms are worse.) My online research turned up nothing in relation to the heart; it was not listed among the symptoms listed where I researched–obviously the wrong websites. For years, the heart has been my primary concern. “Why is my heart palpitating?” I asked myself and others. Of course, being financially broke and with no insurance, I did not receive responsible healthcare. Finally, after exhausting all other possible causes, I questioned an online forum, “Is there a link between CFS and heart palpitations?” This finally led me to Dr. Lerner and now, this article above. A DEEP-hearted thank you is in order here and then—-where do I go from here? I still don’t have insurance to pay for these drugs. My family and friends are dumbfounded by my symptoms. If nothing changes within weeks, I will be completely homeless in six weeks with no money for supplements or heat, etc. I hope that by sharing articles like this one with my family and friends, they will be educated—just in time for appropriate intervention? I really DO want to live. If anyone can send me information about over-the-counter supplements to help me defeat this disease, thank you. For example, one question I have is regarding copper. In a 2001 protocol which I read yesterday, copper is listed as a trace mineral that should not be in the multivitamin. Mine has 2 mg in it. Will that amount cause damage? Is it too much? How in this maze of multi-minerals and multi-vitamins am I supposed to put together a healing protocol with only weeks of finances left? Even if I do, will it work fast enough to get me back to work? I can’t work right now. Is someone going to help me in time? Why do people wait until the condition worsens before they believe the patient is really sick? I have told people, friends, family and physicians for years that my heart is palpitating. Last time it was checked, in 2008, nothing abnormal showed up; they sent me “home” (I’m homeless, staying in someone’s out building with no running water, no facilities). Is there a Good Samaritan out there reading this? Would you help me? I would be very grateful if you do? Thank you. SueAnn*

Guide Response: If you can find a doctor to prescribe meds, you may be able to get the meds themselves for free or at a drastically reduced amount. Here’s a place to start: Getting Free or Low-Cost Prescription Drugs. Also, here’s information on supplements: Getting Started With Supplements. I hope you’re also looking into other benefits you might be able to get, including disability, medicaid, and housing assistance. ~Adrienne

January 21, 2010 at 12:42 am
(11) Karen - Boulder CO says:

SueAnn and Kathy, you both sound like you have chronic Lyme. My 17 year old daughter was diagnosed with CFS when she was 15, but a year ago we found out it was Lyme (even though she still tests negative by conventional tests). One reason we are convinced it is Lyme is that she gets better on antibiotics. More specifically, she gets worse the first 4 days to 2 weeks, then feels better as long as she stays on the oral antibiotics; her best results have been from azithromycin plus augmentin. However, a few days to a month after going off antibiotics she is worse again, which is why I’m looking into the possible viral link. I expect many people have multiple issues. To find a “Lyme Literate MD” (LLMD), the best way is to join a Lyme support email list in your state and ask EVERYONE for their referrals. These docs are VERY hard to find, but they exist and they can help! – Karen, Boulder CO

January 21, 2010 at 1:37 am
(12) karenamum says:

My two daughters aged 12 and 14 years have been ill with chronic fatigue for 4 to 5 years.They were finally diagnosed in May2009 with Lyme disease and have been treated non stop with antibiotics ever since but are not much better.I am now getting them tested for xmrv on Feb 2nd 2010 to see what shows up.Neither can attend school and the youngest cant walk. We dont know when or where they got infected or why its both of them,but my days are spent looking for an answer so they can begin their lives.

February 24, 2010 at 7:44 pm
(13) Dan says:

Another treatment is Vistide. It is used with people who tested positive for CMV. Dr. Dan Peterson medical director at Whittemore Petterson Institute uses in private practice with promising results for ME/CFIDS.

Some have tried doses of Tagamet Cimetidine first came to the attention of Bourinbaiar and Jirathitikal when they observed the inhibition of human T-cell leukemia virus (HTLV-1) secretion from chronically infected cells. This led them to the idea that viral release is regulated in the same way as gastric acid secretion. They discovered that cimetidine has broad antiretroviral activity. Further studies revealed that cimetidine, unlike AZT, which was used as a control, produced no cytotoxicity even at the highest dose tested (1mM). According to the researchers, this is an exceptional drug index that cannot be matched by any drugs currently used in the treatment of HIV/AIDS. Twice-daily doses of 200 mg of cimetidine provide steady IC50 levels (concentration producing 50% inhibition) for HIV replication.”

This is from the forum on
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April 16, 2010 at 5:15 pm
(14) Bob says:

Steve I agree with what you have said. I’m one that has lyme but also a viral component. The theory is treat the lyme which is suppressing the immune system. Once lyme is under control the viruses will go into remission.

Well I did IV abs which did clear up the strange skin infections and mental alertness but I still did not feel like me.
Still apathetic still tired.

I went on acyclovir 800 mg TID and after 5 days I have more energy than I have had in 3 years.

The virus seem to debilitate me more than the underlying lyme disease. Interesting that acyclovir is not effective vs Cytomegalo virus. Its for Herpes simplex.

Blood work can’t be totally trusted. Some people with herpes check negative for antibodies yet they have break outs.

The virus sucked the life right out of me. Its a low grade encephalitis. For people that have a viral based CFS I would try all the antivirals, you will know if they work. If I relied on just the labs I would never have tried it.

Its shaky science but the risk of trying a antiviral for a month vs a lifetime of disability is a no brainer.

The low grade inflammation does cause damage so I would advise people that have CFS to reconsider taking antivirals.

May 6, 2010 at 2:35 pm
(15) Kathy says:

Hi Karen from Boulder, CO. I’m worse than I was in Dec. 2009 when I last posted (I initially wrote Oct. 2009, which shows you how short-term my memory is just scrolling from one part of a page to the next) and honestly cannot remember when I last brushed my teeth or bathed, so it must have been over two weeks ago. It’s been a week since I last tried to get to the grocery store. At this point I no longer care.

I did pursue the possibility of Lyme with my physician since I had in the past tested positive for two “factors” (I can’t remember the real word) on the Western blot, but of course he said 1. that the test isn’t that great and may not provide accurate results; and 2. that if in fact I had been positive for Lyme in the past and went untreated that my immune system has already been adversely affected by Lyme to the point of no return. I have run other things by him as potential other “diagnoses”, but he insists that I am one of only a few patients he’s seen who truly has fibromyalgia (he always ignores the CFIDS). As for my family, I recently went through a stressful period with them, particularly my two “sisters”, neither of who “believes” I have any ailment (except, as one noted, “a little bit of back pain”, although she emphasized to me in many vitriolic tirades that she has a disease called ALCOHOLISM!). Has either asked to see test results or asked for more information on my conditions, including the fact that, forgetting the fibro/CFIDS, et al, I have spondylosis, etc., throughout almost all of my spine, resulting in my need for, at the very least, a laminectomy of my cervical, thoracic, lumbar and sacral spine. I also need the same surgery or similar for severe carpal tunnel in both wrists/hands, etc. Do either ask to see results of X-rays, MRIs, etc.? No. They both usually just start screaming at me without letting me get a word in edgewise, including the one who has reminded me in her enraged rants on my voice mail that she “has a disease called ALCOHOLISM! A-L-C-O-H-O-L-I-S-M!” Apparently, alcoholism is the worst disease known to mankind, worse than the burning, crushing, vice-like grip, etc. pain of fibromyalgia, and dead-like, no life-force, no blood, no bones, no muscles, exhaustion, lethargy, debility of CFIDS.

So what now? There is no help for me … I have so many material possessions but I have no one who loves me.

October 16, 2010 at 11:27 pm
(16) Gracie says:

To those who have written about antivirals not working: please listen to Dr. A. Martin Lerner’s presentation at last week’s NIH Conference on CFS. (It’s preserved online. You can find it by Googling NIH CONFERENCE CHRONIC FATIGUE.) He explains that antivirals work, but they must be the right antivirals for your specific viruses — and they take time to work. He states, I think, that it take as least six months for them to work.
I’d like to hear from anyone who has seen Dr. Lerner.

November 13, 2010 at 4:41 pm
(17) Jean says:

I have been a patient of Dr. Lerner since August, 2010. I tested positive for EBV and Herpes 6. Dr. Lerner prescribed 1500 mg of Valcyte four times a day. I do not feel better at all. I am certain that this high dosage is effecting my GI system. I am also feeling more and more fatigue. Dr. Lerner will not discuss why I need such a high dosage. I am 60 years old and had mono when I was 12. The doctor says the longer you have been sick, the longer it will take the medicine to work. I am seriously contemplating backing way down on his dosage. By the way, he doesn’t “believe” in Fibromyalgia. He seems quite nice when you first meet him, but he has some strange quirks.

May 2, 2011 at 9:32 am
(18) Teri says:

I started taking Valcyte for CFS inDec. of 2009.I stopped taking it bacause it made me too sick and I could barely function.I have not improved after 8 months on Valcyte,and was left feeling worse in some ways.My shoulder hurts bad and my back hurts.At one point during therapy my jaw even ached so bad I could hardly eat (lost 12 lbs.)Dr.Lerner told me he could not be sure why this was happening.Now I am getting rashes all over that keep oozing (dermatologist says it is dermatitis.Applying medication with no results.)I don”t know what to do next,as I can”t work but a few hours a week,can’t do much of anything without crashing.My husband has to do everything(cooking,etc,)The brain fog and lack of cognitive function is bad.I”ve had CFS for 8 years in May of thi year.

June 21, 2011 at 2:00 am
(19) Molly says:

Some words of advice for everyone commenting here about CFS: I highly recommend you explore the possibility of Lyme disease, as mentioned in the article. I have Lyme disease, and was diagnosed with CFS, Fibromyalgia, etc. Lyme disease can cause all kinds of symptoms. Also, if you have Lyme disease as well as viruses (many people with Lyme disease do), it is important to treat the bacterial infection(s)–Lyme disease and any other bacterial tick-borne infections–before treating viral infections. Might be something to consider for those who have tried antivirals with no success.

December 27, 2011 at 4:48 pm
(20) Kathy says:

I’m the same Kathy who has posted before. I am looking into long-term care as I am nearly bedridden. My teeth are rotting, I smell because I don’t have energy to bathe or change clothes, everything is in disarray and my house looks like I’m a hoarder.

I still have no one who cares about me or is willing to help me and I honestly don’t know why I’m alive. I truly am considering a drastic alternative to this living hell. I’m simply a burden.

I have been on Valtrex, Valcyte, and medication long-term for Lyme disease, each one at a time. On each, I initially felt better and was able to function better but after a matter of months, it was back to the same old feeling dead.

Maybe I need a combination of anti-virals, but I don’t know what they would be, the doses and whether they would work for me. If it takes years, would I take two or three in combination for five years at a time? Ten years? Twenty years? Is that what my life should be? To me, that’s not living.

This isn’t living either. I have no quality of life. I don’t enjoy life. I am suffering. Why don’t humans treat other humans as humanely as they treat their pets? If my pet were this ill for this long a period of time, I would have had him or her euthanized.

December 27, 2011 at 5:41 pm
(21) Kathy says:

Has anyone seen this newer (Feb. 2011) article on a study in which two anti-virals were combined to treat group B?

http://www.treatmentcenterforcfs.com/pdf/VAAT-15105-herpesvirus-immediate-early-gene-expression-induces-host-cel_022111.pdf

Maybe I’m reading it incorrectly, but I don’t find any results for group B. Can anyone find results for group B? If not, does anyone know why there wouldn’t be any?

The study was composed of 142 ME/CFS patients, 106 with ME/CFS designated group A, and 36 ME/CFS patients with both EBV and HCMV/HHV6 designated group B.

Among those in group A, ME/CFS patients with elevated serum IgG antibody titers to EBV received long-term valacyclovir, while ME/CFS patients with elevated serum IgG antibody titers to HCMV or HHV6 were treated with long-term valganciclovir.

Group B ME/CFS patients with both EBV and HCMV/HHV6 were given both valacyclovir and valganciclovir.

According to the article, the antiviral therapy provided “an unprecented result” for 79 of the 106 group A ME/CFS patients (74.5%), who now continue to lead normal lives.

January 3, 2012 at 9:13 pm
(22) KM says:

I diagnosed myself with food allergies through an elimination diet, but wanted to see a doctor anyway. I came upon Dr. Dantini. He has a very similar story about treating himself just like Dr. Lerner. He even wrote a book about it. Something smells a little fishy to me. Here’s his website if anyone’s interested: http://www.4fibromyalgia.com/dantini.html

I just started on acyclovir so its too early to give any results.

January 18, 2012 at 1:43 pm
(23) Mary Ellen says:

Everyone, please explore the possibility of mercury poisonining as the base of your chronic fatigue issues. I’m using the Cutler frequent dose protocol, having safety removed my mercury amalgam fillings, and am getting better although I’m still working on my digestive and viral issues.

January 30, 2012 at 8:25 pm
(24) Holly says:

Anyone know of a good doctor who can treat both Lymes, CMV and other microbial infections at the same time and who also will do anti-viral and antibiotic IV’s?

Is there a doctor or clinic in the mid-west?

April 12, 2012 at 2:07 pm
(25) Kierra says:

I have seen Dr. Montoya at Stanford. I don’t know if its more my lack of enthusiasm to try Valcyte but he urge any greaat hope of benefit for valcyte for EBV and HHV6. I have too many others to list and his only suggestion was to try suppressing the HSV with Acyclovir. I haven’t started yet.
But in terms of exhaustion and heart palpatations- I did testing at the Fatigue Lab in stockton which lead me to pace with a heart monitor and also seek O2 therapy. I was afraid I wouldnt qualifty but shocks of all was that while I slept, my saturation levels went down to 83 and 85% over 36 times and often for over 3 mins. Explains not feeling rested eh? So now with O2 at night and also 1 hour sessions twice a day my heart rate doesn’t flip out with simle exertion. Like another here, I couldn’t shower or barely get myself to the bathroom, cook shop or anything.
And eating is almost the second hardest thing for me as well. Pretty certain I could help my body most by focusing on my digestive organs, I’ve done IV nutrient therapy, B12 shots and vegtable juicing. No sugar or processed/junk food of any kind even very little breads. Also edta chelation and nutrients in suppositories. Finally after 4 months I’m just barely feeling less a zombie and heading towards human. If I can get a sense that my digestion is working, I might try several different supplements but for now just pro biotics and I use Mediclear.
I hope to encourage people to look into the O2 testing, because I had no clue or would have considered the night O2 issues happening in the first place.

April 18, 2012 at 8:21 pm
(26) Ralph says:

For 10 years I’ve been diagnosed and misdiagnosed…depression (wrong), psychosomatic (nope), CFS, Fibromyalgia, MS etc. I was finally tested by a very good lab and it shows Lyme disease very strongly. I’ve been rooked by doctor scams, had my business equipment stolen, was dropped by “friends”, “family”-they also stole from me, and my fiancee left like a rocket (taking my daughter to be). I see this combination of illnesses a lot and it’s not easy to say which is the underlying one. I am pretty sure of when I was exposed to Lyme and my symptoms really started soon after that. The past 3 days have been calling doctors and advocacy groups and not getting very far.

Kathy – I also live in Colorado, but in the SW corner and am considering treatment with a doctor there in Boulder. All I’ve read says you will almost certainly need more than one intravenous antibiotic simultaneously to be able to recover. I understand what you’re going through…I’ve had to crawl to get from room to room and 6 months after moving here, it still looks like I’m moving. If you can, have them check your oxygen levels (mine were 63% at night and 78% during the day). Supplemental oxygen has helped enough for me to be able to look for help. There should also be help through human services if you’re on Medicaid. Skilled and unskilled help. They should be able to come in and clean, do shopping, help you bathe, etc.
I’m completely alone as well, but there is still hope. If you don’t have the energy to apply for this help…tell them on the phone. They should be able to help or find help for you.
I’ll pray for you. Try to stand strong and not give up (I know it’s a daily temptation for me also). All my best, Ralph

October 23, 2012 at 10:40 am
(27) Lynda McArthur says:

I am so relieved to have come across this website. I live in England, so you would think I would be entitled to free care? And I am. As much Prozac and dihydrocodeine as they can fling at me, to get me out of the door, before my 7 minutes are up!!
I worked for the NHS, doing regular 12 hour shifts on stressful psychiatric wards, and loving it. When I came down with the flu six years ago, I took to my bed, thinking I’d be back at work in a fortnight, having, done the responsible thing by not infecting staff and patients. When I felt weaker, not better after 4 weeks, I became concerned. At 2 months, I was too weak to go to the doctor for a sick note.
Like you, Kathy, there was nobody around to help, I was dirty, the flat was disgusting and I didnt have the energy to do an online shop for food.
I was finally diagnosed with CFS, but there is no recognition in the UK.

December 9, 2012 at 1:16 pm
(28) jane says:

I have been on Dr. Lerner’s antiviral protocol for over and year and am so much better. I have my life back. It took a long period of ups and downs. Much patience. Misery during the herxing period. But it’s been so worth it in the long run!

December 24, 2012 at 12:52 pm
(29) Nancy says:

Dr. Montoya has discovered some interesting findings in his studies at Stanford Hospital. It would see that possibly there are types of CFS. The HHV-6 & EBV, then the HHV-1 & HHV-2. It appears acyclovir may be more effective in the latter type. Is research is described in a Stanford Hospital youtube video. Well worth the watch.

January 17, 2013 at 10:06 pm
(30) az says:

i had shingles in my head/ear, and never seemed to bounce back to normal. i was exhausted for 18months, brain fog and tons of other symptoms but those were the worst. one day, i found a couple of valtrex leftover from when i had shingles. i’d not gotten the meds “in time” (within 72 hours of symptoms) and had figured that’s why i was still so sick. one day i decided, out of desperation, to take them again. and within ONE DAY i felt like i’d experienced a miracle. my brain came back, and within 3 days, i had found my old self. love that stuff, but it’s sometimes hard to convince a new doc that i need a scrip. i go 6 months without taking anything, find myself dragging, and have to go back on them. valtrex works for me! 3 big pills a day.

May 10, 2013 at 4:45 pm
(31) George says:

Hi! I am writing because I was really very sick with each one debilitating symptom of CFS/Fibromyalgia. What really saved my life was PIRACETAM! You really have to try it, it works as a miracle! Not only for me but for a relative that was really sick with herpes zoster! She was bedridden. Of course she was treated intravenously with Zovirax! Not valtrex the old good way intravenously with acilclovir! And PIRACETAM 6 gr intravenously will work wonders!

July 19, 2013 at 7:08 pm
(32) Lee says:

I suffered from extreme fatigue. My Doctor has me on a regiment of 3200 mg of acyclovir. I started one year ago and will taper down a bit in the third year. It has given my life back to a great extent!

August 16, 2013 at 7:13 pm
(33) Maggie says:

I had mono whine I was in high school. That was 20 yrs ago. Since then, I’ve had two-three reactivations of EBV. Each time, only the symptoms were treated. I was fine for about 3 years, and then I was under chronic stress from having 3 kids, not sleeping, and having a horrible job. So I kept getting sick all the time and I pretty much stayed that way. I lived in Germany until this March, and I found a great homeopathic dr who was willing to check my blood for all sorts of things. The Germans have never heard of moni, so he didn’t check for that or Lyme disease. He did rule out some other possible causes of my fatigue. It showed that I have low immunoglobulin, but he never spoke to me about this issue. I kept feeling crappy, and in fact got worse. Went to an urgent care place and that dr, who was American, checked me for EBV, Lyme, and Lupus. No Lyme or Lupus, but positive for EBV. I also had a secondary bacterial infection, so she gave me antibiotics. I have not had my EBV levels checked or my immunoglobulin checked since November 2012, so not sure where I’m at now. I went to a dr when we moved so back to OK, but he didn’t check my EBV. He did find that I have Sjögren’s disease. I feel fatigued most of the time. Went to a compounding pharmacist here, and he thinks I should take Valtrex and increase my stomach acid to get more nutrients absorbed to get rid of the EBV. Started Valtrex this am. Bought it online, so not sure on the dosage. I couldn’t get any dr to prescribe it for me! But I do live in OK, and it’s not really known for its advanced medicine!

So glad to have found this article, I hope the Valtrespx works for me. I will do my best to update.

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