HealingWell
Search Close Search
☰

Promising Treatment for CFS

Support Forums
>
Chronic Fatigue Syndrome
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/18/2006 5:48 AM (GMT 0)
Hi everyone,

I'm kind of new here, having only posted a few times.  But I"m not new to CFS/FMS.  I've had this stuff since 1995 and a few other nasty health issues as well.

Anyway, I'd like to tell you what I consider to be very good news that apparently you haven't heard about yet.  Before I post this, I just want to say that, as with any treatment, it may not work for everyone.  Ok, here goes:

I am seeing a doctor by the name of Dr. Martin Lerner, Beverly Hills, Michigan.  He is an infectious disease doctor, affiliated with Wayne State University, Detroit.  He is head of Internal Medicine there, has his own practice and does CFS research in conjunction with William Beaumont Hospital, Royal Oak, Michigan, which has a highly respected Cardiology Department.

Dr. Lerner's research shows that CFS is the result of viral infection of the heart, or viral cardiomyopathy.  He believes the viruses responsible to be Epstein-Barr, Cytomegalovirus, and HHV-6, all from the Herpes Virus Family.  In his research, he found elevated viral titers, T-wave abnormalities on Holter monitor, and he isolated these viruses from the hearts of the research patients.  100% of the research patients!  He also does cardiac ultrasound, but I don't know for sure what he is looking for except heart valve anomalies that we all seem to have too. 

His research is peer-reviewed.  Recently Dr. Paul Cheney, another top-notch CFS researcher announced that CFS is an idiopathic cardiomyopathy, which means that he doesn't know what causes it.  But both doctors agree that the type of cardiomyopathy that CFS is, DOES NOT progress to require a heart transplant because the fatigue the patient experiences saves them from overdoing it.  This of course, is why Dr. Lerner emphasizes that if you have CFS you SHOULD NOT exercise or over-do it.

Treatment:  Dr. Lerner treats his patients with the appropriate anti-viral therapy and has had good results.  He himself had CFS in the early 90's, to the point of having to step down from his post at the university.  Today he is back at his post, teaching, researching, and seeing patients.

I am one of his patients.  I have been seeing Dr. Lerner since Jan 2005 and taking Valcyte since Feb 2005.  He dx me with Cytomegalovirus infection in my heart.  He DOES NOT biopsy his patients's hearts because he has proven with research that all patients who have viral infected hearts also have abnormal T-waves, and elevated viral titers.  In August 2005, I began to feel better.  I couldn't believe it and frankly thought it was my imagination.  But here it is a year later and guess what?  I am better!  And I was sick for 10 years before getting treatment.  Now, the bad news is that I will have to be on the VAlcyte for a while yet because my progress is slow, owing to having been ill so long and to the fact that the virus damaged my immune system.  (Previous immune tests showed this).  But Dr. Lerner says I should recover most of my life.  Even if all I get back is what I have already, I will forever thank God for Dr. Lerner.

Word to the wise:  The insurance companies don't like to cover Valcyte. It is one of the most expensive meds out there for viruses, but the best for Cytomegalovirus.  So, if you need it and don't have insurance coverage, go to the drug company, Roche, directly.  All the drug companies have patient outreach programs to help people, and you don't have to be real poor.  My husband just changed jobs and they are giving me three months worth until our new insurance kicks in.

BTW- No side effects from the Valcyte even though it is a powerful med.  Thank God.

Anyone interested in more info should check out Dr. Lerner's website:  cfsviraltreatment.com  if that isn't it, try .org, but I think it's .com

I hope I've helped someone with this info tonight.

This may not be the answer for everyone, but it may be the answer for some of us.  We'll have to keep hoping and praying for the rest.

Take care,

Musicgirl

Posted 8/19/2006 7:34 PM (GMT 0)

Hi Violets,

Thanks for your reply.  It's great when I get to speak to another patient of Dr. Lerner's.  I've spoken with several over the last couple of years and they have had varying responses to the treatment.

As for your questions regarding Lyme.  I have been tested a number of times by several different doctors for lyme and it always comes back negative.  I can't say positively, but that would make me think that I don't have it.  I do however, think that your theory of Lyme being the "activator" in some people is a possibility.  What I think could be happening is that there is an "activator" which causes our bodies to stop suppresssing CMV,EBV, HHV-6, etc.  In essence, it suppresses our immune systems.  I know mine is suppressed because I've had tests on it and I showed a significantly lower response than I should have, indicating that my cell-mediated immunity isn't working properly.  That is the part of the immune system that identifies the microorganism so that the body can mount a defense and begins the defense action.  Obviously, without that, there is no defense. But, keep in mind that an infection can also suppress the immune system, so that means that CMV or any of viral, bacterial, or fungal infection could be suppressing it.

Anyway, back to the activator theory.  Something happens that impacts the immune system, thus activating one or more viruses and viola! CFS.  I think that the sticking point in research is the fact that the activator, and the thing that impacts the immune system can be one and the same or two completely different things.  And to top it off, it can be totally different person to person.  That makes this a very difficult disease to conquer.

As for Dr. Lerner.  I believe he has a big portion of the puzzle correct.  Obviously, or I and others wouldn't be getting better.  BUT I also believe that there are other co-infections present.  In fact, I am seeing a neurologist for sleep who just happens to also specialize in CFS/FMS and works with the Fibro and Fatigue Clinics.  He has tested me for other infections and also tested my hormone levels.  As you know, the HPA axis gets out of whack with this disease too.  He is planning on treating me for the hormone problems soon.  He believes that is part of my sleep problems.  I know sleep problems are part of this whole mess too.  And in addition, I have another health issue that impacts most of my body, including sleep, energy pain, etc. and that is that I have Chiari I Malformation and Syringomyelia.  This is a pretty uncommon condition, or was until recently when it became easier to I D by MRI.  It is where your skull is too small at the back of your head and it isn't noticed for years and over time the back of your brain is forced (herniated) down into your spine.  The Syringomyelia part occurs in some people with this disorder when the herniated brain blocks the flow of CSF(cerebrospinal fluid) to the point that there is only a pin-size area for it to come through to continue it's circulation around the spine and brain, so it comes out with such force that it actually injects itself into the spine causing blister-like sacs called syrinx (syringes=plural).  These cause outward pressure on the tissue of the spinal column, causing nerve damage that can become permanent.  If left alone this can lead to paralysis.  If the Chiari I Malformation (hindbrain herniation) isn't taken care of, and a person coughs, sneezes, or has a fall, they can actually become paralysed or die.  Even if none of these awful things happen, the symptoms can become overwhelming, leading to disability. 

Anyway, these disorders affect the brainstem area since the brain is wrapped around them when it is herniated.  Even though I have had the surgery to remove it, I still have brain tissue wrapped around the brainstem so I suffer symptoms. 

The whole reason I told you this is because Chiari symptoms can mimic CFS.  In fact, a few doctors believe that Chiari causes CFS.  However, mainstream thinking doesn't support that.  It is possible though to have a cervical myelpathy which will cause CFS-like symptoms.  That is why anyone diagnosed with CFS should have an MRI and a work-up by a neurologist.  Most docs already rule out MS with an MRI, but many radiologists don't even report a Chiari Malformation because they were trained to think that it was a normal anomaly until recently.

Geez, I'm sorry, I just wrote a book on this subject! 

Back to your post...you asked a couple ?? 

My symptoms before treatment were very similar to having a viral infection all the time:

low grade fevers, sore throat, swollen glands, white sore spots in mouth and on tongue, joint/muscle pain, extreme fatigue, fuzzy thinking, blurred vision, no stamina, easy to contract illnesses, palpitations, heart aching, shortness of breath.

Symptoms that are gone or better: Better:  fevers, sore throat, swollen glands, spots in mouth and on tongue, easy to get ill, palpitations, heart aching, shortness of breath, fatigue is better, not gone yet, joint/muscle pain remains.  The fatigue and joint/muscle pain seem to be the ones that are the hardest for me to overcome, however, I also am not as compliant as I am supposed to be sometimes with the rest portion of the treatment.

As for the tests Dr. Lerner ran:  He found T-wave abnormalities, elevated viral titers, mitral and tri-cuspid valve abnormalities.  I also had symptoms of congestive heart failure which can be caused by a viral infection in the heart.  Those symptoms are swollen ankles and shortness of breath and heart pain.

As for your T-wave abnormalities.  Those with elevated viral titers do indicate viral infection in your heart.  At least that is what all of Dr. Lerner's research has shown.  It is possible that you have Lyme and also have CMV in your heart and so should be treated for both.  Just a thought.

Let me know what you think of this info.  I'm very interested in keeping in touch about this stuff.  Do you live in Mich?  I would definitely like to have your email addy.

Musicgirl

Posted 8/19/2006 11:19 PM (GMT 0)
Hi Violets,

Thanks for the reply.

I didn't tell you that I was just retested for lyme from the doc that specializes in CFS/FMS from the Fibro/Fatigue Centers a few months ago. He said it was neg.  That's the 5th test, I believe.  However, when I see him in Oct I'll ask for a retest just to be sure.  BTW- I also have Hashimoto's Thyroiditis (an autoimmune disorder), which in itself can cause many of my symptoms including joint/muscle pain.  (I guess I am a complex case because I have several conditions which can cause the same symptoms so sorting it all out is difficult).

The aching joints and muscles could also be attributable to the CMV though or the other co-infections that he found.  It's not that I don't want a dx of Lyme.  I just don't think that's it.  But I am open-minded and willing to retest because the bottom line is getting well.

Also, I have been on a number of antibiotic protocols in the last year and a half with Dr. Lerner and am wondering what antibiotics you are on for it.  It's possible I was already on a course of meds that would have taken care of it if I did have it.

If you could tell me which ones are prescribed for Lyme and for how long, then I would know if I've been treated for it inadvertently.  (Wouldn't that be great?!)

Gee, too bad you don't live in MI.  I was thinking if you did and we were close, we could maybe meet and get coffee or something.  Oh well, email will have to do.

Take care and write soon!

Musicgirl

 

Posted 8/22/2006 5:49 AM (GMT 0)
Shades of Dr Jay Goldstein!!! The Chiari I Malformation information. Seems to me he was the first, or the first prominent CFS researcher, to come up w/the Chiari I Malformation theory.

And Dr Martin Lerner!! Goshes, how fascinating to see that the theories and research of the two CFS researchers whose research most interested me back in the early to mid 90s is still current and being followed up on!
Posted 8/22/2006 9:54 PM (GMT 0)

Hi Violets,

Sorry it took so long to respond, I've not been feeling well, my husband gave me a new bug he has!!

Regarding your question about the antibiotics:  I was put on them for an embedded sinus infection.  Dr. Lerner does look for other infections, but just not a lot of them. 

I was on Zithromax, and Augmentin mostly.  I couldn't take them because I needed to take high doses and they upset my digestive system so bad that I had to quit taking them.  I was supposed to take them for a month or two, but just got too sick.

Re: Your other ??  I do have neuro sx but because of my Chiari it is difficult to separate out what is what.  For the most part though, I would say that they are due to the Chiari, since they are in the locations that the Chiari affects. I also have insomnia, but I've had that for most of my life, again a sx of Chiari.  And the sweats too are Chiari related or could be.  I don't have a lot of problems with sweats.  What I do have is that I sweat when I get hot but I over-sweat on my lower back and legs.  I have been told that these are Chiari issues.

As for the Lyme being the activator, like I said, I think it's different with different people.  I think that maybe we're looking at a disease with different subclasses or maybe even entirely different diseases.  However, when I hear from patients with this disease, I find that while everyone seems to have the same disease, some seem to lean more toward a Fibro-type with the main sx being pain.  Then there are others, like me, who have the type that have more viral-type symptoms.  Now, having said that, mine did end up having more pain but kept the viral symptoms too.  I think though, that the pain issues were from the Chiari Malformation/Syringomyelia.

I think that the people who start predominantly with pain sx, that their disease is caused by something else and may not actually be CFS.  It may actually belong in the FMS category.  The people who start predominantly with viral sx, I believe have a viral cause.

Having said that, they both could be caused by any micro-organism, just whether they are bacterial, viral, or fungal is the question.

It is also true that CMV, EBV or any virus can suppress the immune system so that they alone could be contracted and cause CFS, as could Lyme.  But I do believe that whatever is causing the suppression of the immune system allows other co-infections to exist and is the key to the whole picture.  As you said, it is a question of the chicken and the egg.

Again, the puzzling thing is that everyone doesn't have the same activator, or even really the same set of symptoms. 

I will forever be grateful that I found Dr. Lerner.  I wish I had found him years earlier because I think that's why it's taking me longer to beat it.  But, I do think I will beat it.  I have seen way too much improvement not to believe that Dr. Lerner is on to something.  He did tell me that depending on how long I had it and how my body handled it would affect how much I recovered but he thinks I could get back a significant amount of my former self.

As for whether he has the whole pie or just a piece of it.  I think for some people, he has the whole pie.  If they have only CMV,EBV, HHV-6, etc. infection, then he can cure them.  If, however, they have co-infections, then I believe once he gets the CMV,EBV,HHV-6, etc under control, they will also have to address these other co-infections if they want to get well.  That's what I intend to do.  But his idea about it being an infection in the heart, in my opinion, in absolutely correct.  I have had way too many heart sx to not believe it and all of them went away when I started taking the meds.  Also, remember he did have another CFS researcher agree with him that the fatigue is caused because the virus attacks the heart.  Makes sense.

I think that regardless of what each of us believes, it is fair to say that we want very badly to get well.  We want it for us and we want it for everyone who is sick or will get sick.  Let's hope it's in our lifetimes.

Take Care,

MusicGirl

Posted 8/25/2006 2:48 AM (GMT 0)
MusicGirl, thank you for your informative posts.  I'm just curious what some of your heart symptoms were?  I, too, have had CFS for over ten years, having gone through the classic "stages" of the disease of a flu that would never go away, unremitting fatigue that continues in a milder form today, severe immune system repression, and all the other myriad symptoms including headache, sore lymph nodes, cold sores (which I never had gotten previously), fungal infections, etc.  But what's interesting about my progression is that I had fairly decent exercise tolerance for about the first six or seven years of the disease, having formerly been a competitive college distance runner who routinely ran 100 miles/week.  I would be exhausted if I overdid it, but I COULD still run, albeit much slower and less frequency. 

about four years ago, I stated feeling faint at work, and I sort of panicked and got a colleague to drive me to the emergency room, not knowing what was going to happen.  My blood pressure was low, but not abnormally so.  I was already consulting with a CFS specialist and he ended up doing a tilt table test and diagnosed me with neurally-mediated hypotension, for which he prescribed me midodrine, which raises blood pressure.  In any event, I practically lost my ability to exercise without experiencing the dizziness, and heavy fatigue would set in afterwards.  I could no longer manage to run or cycle uphill without it absolutely crushing me.  

For some reason, it never occurred to me that this could involve the heart  (even though I had a former college cross-country teammate die of a cardiomyopathy from a different virus), and most of my doctors were saying it was probably neurological or involved the endocrine system with depressed adrenal and/or thyroid glands.  But recently, I started doing some research into mitochondrial myopathy and came across both Dr. Cheney and Dr. Lerner's works involving myopathy of the heart.  Instantly, the light bulb went on, and some of the symptomology that Dr. Lerner described could not have been more accurate or representative.  I started supplementing with L-carnitine, ribose, COQ10, magnesium, and acetyl carnitine via recommendations in the link included below, and I swear, I believe it is making a difference!  However, I still have low-grade "wooziness" and chest pain that Dr. Lerner describes and I am looking to make a trip to see him (I'm in Colorado). 

I think both you and the other poster are correct in that something takes down your immune system and enables these infections to take hold, so that needs to be addressed globally, or these specific viruses may take root again.  However, I also believe that even if you bolster your immune system (I did this via a liver cleanse and extremely stringent diet which got me back to the point where I could work in the first place), the virus could still be active in your heart or may have done enough damage to cause these problems, and that is the MAJOR area that needs to be addressed.  For the first time in many years, I am cautiously optimistic about fighting this illness and I am curious as to why YOU also believe it involves the heart to such a great extent?  Any additional info. would be appreciated.   I would also like to be able to get in to see Dr. Cheney, but that is nearly impossible due to the limited scope of his practice.  I don't know if anyone else has similar experiences with him?  I apologize for the long-winded post. 

http://www.drmyhill.co.uk/article.cfm?id=373

Posted 8/25/2006 5:14 AM (GMT 0)

Hi Billyjack,

Glad to have you here.

You asked why I believe CFS involves the heart so much other than the obvious research by top researchers Cheney and Lerner.  My personal reasons are because of the symptoms I had and how they have improved since going on the medication.  I never thought about a heart connection until I read Lerner's work.  When I went to see him, I had an open mind about it.  But after being on the meds for 5 months, I started to actually feel better.  NOTHING had made me feel better including having Chiari surgery for my Chiari Malformation which some docs think is the cause of CFS.  But I went from a 3 on the Fatigue Scale to about a 5 so far and I continue to improve.  This is after 10 years of illness without ANY treatment for the infections!  I know I may never regain 100% of my former self, but even if I continue at this level, I've improved so much that I can't begin to tell you what it means to me.

Because of my other health problems, I'll probably never be able to hold a job again, which is something I really wanted to do.  I also had to give up a charity that I had founded myself and made a state and federally registered one.  We did a lot for the children in my county.  I had plans of starting my own business, and also I am a singer.  I am an artist, and do interior decorating as well, so I am highly motivated to get well.  However, our lives don't always turn out like we want them to and that can be hard to accept.  I have grown children and a husband, but not a lot of family support for my illnesses, so it makes it difficult and also makes me want to get well.  But, I can only do what I can do.

Right now, I'm experiencing a set-back due to my pain doc giving me a med that I'm having a bad reaction to.  I'm hoping to begin to feel better within a few days now that I know what did it.

I think you seeing Dr. Lerner is an excellent idea.  Since you already know you are having heart-related symptoms, you cannot wait.  But be patient.  It will take time and you will have to be very easy on yourself.  He will remind you of that often.  I am sorry your friend died of viral cardiomyopathy.  It does happen.  This kind that we have doesn't usually kill, so that is good. 

Oh, you asked my heart sx:  palpitations, shortness of breath, esp when lying on left side, pinching pain on left side of chest, swelling ankles,  My other sx were a lot like the ones you mentioned.  And yes, I COULD do exercise for the first few years, and I could push myself and did.  In fact I still did up until I started seeing Dr. Lerner.  I didn't know I wasn't supposed to since most docs make you think you should.  Most docs treat CFS patients like Fibro patients.  They tell them to exercise but not overdo it.  But CFS patients shouldn't exercise at all!  Hardly anyone knows this, and the people who do, docs and patients alike, don't want to hear it.  But until you've been treated for the infection, you are seriously taking a chance with your health if you push yourself like that.

As for Dr. Cheney, I tried to see him, but the last time I tried, he wasn't taking any new patients since his heart transplant.

Hope I've helped.  If you have any more ?? I'll try to answer them.

Musicgirl

Posted 8/25/2006 3:29 PM (GMT 0)
Thanks again, MusicGirl.  Yes, this is very helpful.  It helps to have people who can empathize with you in all facets of life, having acquired this miserable condition.  I, too, had to eventually leave my job because of the heart-related symptoms, and I am currently a full-time dad at home with two beautiful young daughters.  Even though I rarely have the energy to keep up with them, it has been a blessing in disguise.  You are right about acceptance.  Ultimately, you have to be happy with being a human "being" rather than a human "doing."  I am slowly reaching this epiphany, as I was your classic type A personality, having also been pre-med in college. 

I'm curious, do you do any kind of exercise at all, like just gentle walking?  I came to the painful realization that I should no longer be cycling or running (or jogging for that matter), not that I could really do it well anyway.  Does Dr. Lerner give you hope that you may eventually be able to do some exercise, or does he think that it's simply not a good idea for someone who has had CFS?  I do definitely concur about this significantly impacting the heart, and many of our symptoms were the same, including the "pinching" pain on your left side, though mine was more of a stabbing pain at times.  Does Dr. Lerner advocate a certain type of diet?  I drink a lot of coffee to get me going in the morning, which I know is probably stupid and probably ultimately exacerbates my condition. 

Anyway, thanks again for all of your responses.  I am looking forward to getting back to Detroit actually.  My father grew up in St. Clair Shores, and I have fond memories of visiting my grandparents every summer.  I just hope to catch a Tigers game if I can get there in September. 

 

Posted 8/25/2006 6:08 PM (GMT 0)
Hi Billyjack,

BTW- Love the name, it reminds me of the movie that I also loved.

I am sorry to hear that you had to give up med school for this darn disease(DD).  So many of us have given up so much.  I hope that one day they have a cure and I hope its in our lifetimes so some of the younger ones like you can still pursue your dreams.  But when God takes one thing away, he gives another, and this has given you an opportunity to spend precious time with your daughters, so it sounds to me like you are a very lucky person.

You asked a couple ??  Yes, Dr. Lerner does allow exercise once you are better.  In fact, one of the ways he knows you are better is your ability to exercise.  I recently asked for permission to begin singing again, which you may know, is  very physical and he had not allowed me to do.  He said to go ahead and try it and I was actually able to do it and even able to do some performances!  I am getting close to being able to start an exercise program again (I used to workout 2 hours/day, I also was a Type A overachiever).

Dr. L doesn't really go into diet much, other than to ask how you eat.  He usually will ask that at the first appt when he is accessing you.  He also places emphasis on keeping up with your dental work, but really doesn't explain.  However, I have done my homework and understand the significance of a dirty mouth causing infection in the body, etc.

Re: Your coffee drinking.  Me too, only I don't/can't drink much of it.  I can only have one cup because I am also hypoglycemic and the caffiene speeds up my pancreas, which of course then speeds up the production of insulin, which of course then screws up my sugar levels, what fun.  But, you are correct in that stimulants are a bad idea.  However, there are CFS docs such as Teitelbaum who recommend natural ones, so I guess if you are careful, you can have a LITTLE caffiene.  I sometimes use a natural energy enhancer called PEP, but only the original formula and interestinly, it doesn't affect my sugar levels. I would also say to NEVER use guarana, or anything else that has a lot of caffiene in it or is real strong.

That's wonderful that your father grew up in SCS  If you haven't been back in a long time, you may be pleasantly surprised at the changes, especially in downtown Detroit.  Also, my mother-in-law used to live in SCS and moved just a few years ago, small world.  If you do get a chance to catch a Tiger game, you will LOVE the new stadium!  It is awesome.  There are a lot of really nice things happening now in Detroit.  I'm so glad because we've had such a bad rap for so long that it's about time we showed everyone that we are as good a big city as any other.

Well, take care and let me know what happens with you.

Musigirl

 

Posted 8/27/2006 7:57 PM (GMT 0)
I would highly recommend Dr. Lerner in all regards to CFS. I have been a patient of his for the last 5 years, and my quality of life has improved greatly. The sooner treatments are started, the better chance for recovery. I am now on a low fat diet, and exercise lightly for conditioning puposes. It's not what I want, but it works. Ha!
Good Luck,
cmike
Posted 8/27/2006 11:16 PM (GMT 0)
I have read that some doctors think there is a fungal etiology to FM and CFS. Any thoughts on that?
Posted 8/29/2006 4:39 AM (GMT 0)

Hi Mike and Kim,

Thanks for your posts.  Just wanted to add a few things.

Mike- It's always great to hear from another of Dr. Lerner's patients who is doing well on his protocol.  I am so glad it is working for you.  As I've said, I believe in him and in his research and that is why I've stuck with it for so long.  I went in with an open mind and when it worked, I was pleasantly surprised but it made sense and it continues to work, so I am happy.  Good luck to you on getting better and better.  You were one of the lucky ones to get treatment early on in your disease.  For me, I expect it will take longer for me to recover fully, or as fully as I am able, but I DO expect to recover, and that's the great part.

Kim- I've not heard that any of the top CFS researchers are saying the main culprit is fungal.  I can't really speak to it, since I haven't.  However, it's possible for the main micro-organism to be fungal, and then that sets up the cascade of events we recognise as CFS.  My understanding and from what I have been able to find from the research is that most of the top CFS researchers believe that this has a viral or bacterial etiology.  That doesn't mean that a fungus isn't one of the co-infections present in some patients, as I am sure it is.  I have Candida, which I am sure many also have.  It's just that I don't think there's been any research showing a fungus is the main cause of this disease.  Whether it is or not, it needs to be treated, just as any other infections which are present need to be.

Hoping to hear more from everyone.

Take care,

Musicgirl

Posted 9/1/2006 4:27 AM (GMT 0)
Hi Musicgirl
Thanks for writing back.
Well, to be honest, I kinda got a very late start on treatments, since I came down with CFS in 1987(started treatments 6/01). Actually, my true start of recovery was when I was finally diagnosed with CFS. Of course, I knew I that I was ill, but like many others, had no documentation to verify it. I always suspected that the cause was a viral infection due to the symptoms, but I was surprised when I found out that this infection effected the heart. You live and learn. Knowledge is power.

Unfortunately, I may have hit my high point in regards to complete recovery at this point. My point score is a strong 6, and has been for the last several years. I did reach a 7 at one time, but life's little stresses set me back a bit. Ha! However, even so, I optimistic about the future, and am adaptable. Like you, I expect to fully recover in time. One day at a time. My biggest problem is that I still want to do to much. This is a LONG process, and the better I feel, the more impatient I am to get on with life. As I told Dr. Lerner, if this is as good as it gets, I'll take it, because the quality of my life is so much better than it was prior to his treatments.

Hey, what the heck, I'm out of the fast lane now. Life is good.

Let me know how you are doing,
Peace,
Michael
Posted 9/1/2006 6:22 PM (GMT 0)
Hi Michael,

Thanks for your post.  You sound as if you are doing pretty good!  You were fortunate to get treatment going in under 5 years!  I wasn't even dx for 3years and then it was another 7 before I saw Dr. Lerner.  That makes a total of 10 years without proper treatment.  Unfortunately that is pretty common.  There still is an appalling lack of information and treatment available to us.

As for your energy levels.  I hope some day to be where you are.  I started with Dr. Lerner at just over a 2 and I am now just over a 4.  To me that is a huge difference, but that just goes to show how little energy I had when I began seeing the good doc.  I was barely able to function.  Even personal hygiene was a chore.  But, I am improving daily and I wouldn't be surprised if on my next visit he ranks me at or near a 5!!

I totally understand about the impatient thing.  Dr. Lerner has to constantly remind me to be patient.  You are absolutely right that the better you feel, the more impatient you are to feel better! I am just like you in that I tend to overdo it.  It's difficult because life has a way of demanding too much from everyone and most of the time you can't just say "no".  But I try very hard to listen to the doc because he had this awful stuff too, and I know he knows what he's talking about.

I recently had a bit of a setback because my husband changed jobs and I was off the antiviral for a month.  I thought that since I had been on it for over a year it would be a good test to see how much progress I had made.  WRONG! Apparently, I am not ready for such a test yet!  I deteriorated so quickly I couldn't believe it.  BUT this also absolutely cemented in my mind that Dr. Lerner knows what he's doing.  I will not be doing that again!  I am now recovering to the level I was before I went off the med and even surpassing it, so I'm pretty sure no lasting damage was done.

Dr. Lerner was so disappointed when he found out I had been off of the med for a while.  He said I was showing such promise that he had hoped nothing like that would happen.  But as soon as I got the med(from the manufacturer's patient outreach program until my husband's new health ins kicks in), I called the doc and told him so he could rest easy.

I will see him in a few weeks.  I'm so glad to be feeling better again!!!

You are so-o-o right that this is a long process, but worth every bit of it.  Until I saw Dr. Lerner and felt the meds working, I thought I would never be anything like my former self.  Now, I am getting back more of "me" everyday.  My family and friends can't help but notice and are so glad that I am coming back.

You're right that we're not in the fast lane anymore, but at least we're in a lane that's moving forward!!  I'll take that over being almost bedridden anyday!!

Take care, and let me know how you are doing.  This is fun! 

Musicgirl

Posted 9/2/2006 4:08 AM (GMT 0)
Hi Musicgirl,

Actually, I had CFS for approx. 14.5 yrs. before I started treatments with Dr. Lerner in 2001, but hey, when you're having fun, who counts. I will recover....in time. Patience!

Dr. Lerner is the "very" best doctor I have ever had. Period. I have the utmost respect and gratitude to both Dr. Lerner and his staff, and will always be in his debt. Thank you God for leading me to him!

I can totally identify with the personal hygiene chore. Often, when I get a little depressed, I just try to think back to the time I could barely get out of bed to eat, etc. My cats made me get up to feed them regardless of how sick I was. Ha!

In regards to the meds, I had to reduce my intake for several months last year while I was treated for babesiosis, and I could very much tell a difference in my body. Like you, I'll not to go there again.
I try to follow Dr. Lerner's advice "religiously"! I transgressed some in the past and payed for it. As they say in the South, "I'm born again"! Ha! At least I don't have doctors telling me that I have depression, or that I need to speak with a psychiatrist.
Like you, everyone comments on how much better I'm doing.

I can relate about being able to obtain the meds. I was FINALLY able to get on disability. I PRAY that you have that option, as it releaves much of the stress of obtaining meds(and what fun that can be), at least for the time being. If I could be of any assistance with that, PLEASE let me know.
I'd never choose it as a career move though, there's just no money in it.:)

As far as life demanding too much, it does, and I know how hard it is to say "no" to it, esp. when you have to take care of others. I have to set back often and tell myself, "you have to think of yourself more now, you have no choice"! Plant this in your mind, "I've got to take care of me"! Stress must be avoided as much as possible, "I get sick if I get stressed". Of course, it's always easier to give advice than take it. Ha!

You know, you see more of the countryside when you live in the "slow" lane!

I get to see Dr. Lerner next week,
Always a pleasure to talk with ya,
Michael
Posted 9/2/2006 4:50 AM (GMT 0)
Hi Michael,

Just checked my appt with Dr. Lerner and I see him next week too!  I see him on the 6th at 1:30, so if you see him the same day, we might run into each other!

As for the disability, I am on SSD, but how is it they help with meds?  I don't have prescription with my medicare because my husband has it with his employer's plan, but since he just changed jobs, we are waiting until the first of Oct for it to start.

You are so right about stress and our illnesses.  My grown daughter just moved back in for 6 mos to a year.  She is and always has been a difficult person for ANY one to get along with.  She just has so many emotional/personality issues.  It's something that she inherited from her father's side of the family,(her father passed away when she was 5).  His whole side has depression issues and some serious mental health issues, several suicides, etc.  Needless to say, even at 29 she is a handful.  She's very critical of me and just can't keep her mouth shut.  She doesn't see how her mouth ruins her relationships at work, romance or family.  She's seen counselors, but I honestly think she will never change.  And I love her.  But I've always been a helpful person and I am just beginning to see that I can't help her and what's more, she doesn't want me to.  So, between that and my husband who doesn't get along real well with her, it's going to be a stress filled year!

When I hear that I shouldn't allow stress to make me sick, I think that maybe it is what made me sick to begin with.  I also would love to find an island and go there!!

But, reality is reality, and we all have our stressors.  So, what I'm doing is trying to find ways to avoid confrontations with her.  I'm also very artsy, so I just keep busy doing my arts.  She's also critical of that, but I just let it go in one ear and out the other!  I know that she is very unhappy inside to be so critical on the outside.

Well, really didn't mean to make this a counseling session.  But stress is a huge part of any illness and we have to take all steps we can to avoid it in our lives.  Imagine a world without stress.......

Well, take care.  Maybe we'll run into each other sometime at the Drs. office!!

Musicgirl

Posted 9/8/2006 8:18 PM (GMT 0)
I have an appointment on the 15th.  Does anyone know typically how many trips to Michigan are required to get through the initial consultation, labs, and follow-up for an out-of-stater?  Many thanks.

BillyJack

Posted 9/9/2006 5:09 AM (GMT 0)

Hi Billyjack,

I am assuming you are coming to see Dr. Lerner.  All I can tell you is what it was like for me when I started with him.

I saw him initially for about an hour or two.  It's a long consultation and he takes a very thorough history and will then take blood and do an EKG.  After that he will schedule you for your Holter and Echo.  Since I am not from out of town, I don't know how he does his scheduling for that.  But if I were you, I would call his office and ask them.  They are usually very nice and helpful.

Once all the tests were in, which was a few weeks, I started my anti-viral therapy. 

I'm glad to hear that you are going to see Dr. L.  He is the BEST.

Please keep me informed of how you are doing and what he says.

Take care,

Musicgirl

Posted 9/9/2006 9:25 PM (GMT 0)
I didn't take the time to read all of the posts, just like the first four. As for trying antibiotics goes, chances are if you've had lyme for ten years you wouldn't simply respond right away with treatment. It would most likely take a long time, and it would have to be high dose orals or IV antibiotics. Even then you might never feel better. So far I havent, and I've been getting treated for almost a year. You can almost never rule lyme out, so keep it in your mind. Its a mysterious and complicated (as well as relatively common) disease.
Posted 9/10/2006 2:07 AM (GMT 0)
Hi Musicgirl,
Sorry about the delay in answering your post and missing you on the 6th, (in and out for a Holter) wouldn't have been much company on that day anyway,uggh. I have been away from the computer for awhile (been a bit under the weather) feelin' better now. Sure, visiting with you would be fine. I'm due to see Dr. Lerner on the 25th of Sept. at 10:15AM.

I didn't know if you were on disability or not as of yet. Regarding SSD in realtion to meds, I was put on Blue Cross Blue Shield of Mich. The medicare thingy was really complicated for me. You might check with Medicare (talk with a human), and ask them if you can qualify for a prescription program, or ask if they have some stop-gap program for you, so that you won't have to miss medications. I do know that they have a zillion different programs, all subject to change. Ha! It took them forever for them to get back with me. But ask them, they don't volunteer a lot of info, mostly I think because they don't know whats going on anymore than you do. But, if you are on Disability, there should be help for you. Check also with your county Medicaid people, they can refer you to a person in their dept that would be of help, at least they did in my case. Let me know what you find out.

Speaking of stress, realitives are the best source, that's why I escaped to Mich. :) It is very hard to avoid confrontations with those close to you, because they know which buttons to push,esp. if they live with you. Feel free to vent anytime, I truely can identify with those types of stress factors. Ha! Currently I am on the avoidance program (I hide from them). Ha! Proir to coming down with CFS I was also in a "very, very, stressful" situation, and I feel that was probably what triggered Chronic Fatigue.

If you find that island to hide out on, let me know, I'd like to buy a lot on it. I hope that is far, far, away!!! Try to stay extremely positive, don't let the negativity get you down (easier said than done). Some people just need "choke therapy"!

My latest downturn was due to family stress, and it will make you sick!!! There is a lot of negativity out there, heck, it's just a negative time I guess.
Holler back,
Michael
Posted 9/13/2006 2:07 AM (GMT 0)

MusicGirl, thanks for your prompt reply.  Did Dr. Lerner schedule anything besides the holter and echo for you, and were they a special kind of holter and echo test to your knowledge?  I already have results from both that I am planning to bring with me from another doctor (cardiologist) as a baseline, but I'm wondering if Lerner's tests are more extensive or if he does any of the impedance-type tests referred to in Dr. Peckerman's studies? 

BillyJack

Posted 9/13/2006 2:10 AM (GMT 0)

MusicGirl, just a follow-up question.  My consultation may be different than your own, but were your tests completed in a day, or did they require multiple trips?  I have already talked to Dr. Lerner's office, but I'm just curious. Thanks again. 

Billy Jack

Posted 9/13/2006 2:43 AM (GMT 0)

Hi Billyjack,

Yes, my tests required several visits to Dr. Lerner's office.  Esp the Holter monitor because you have to go in to have it put on and then you must return it the next day before I think 10 a.m.  Dr. Lerner's office may be able to arrange a special schedule for you since you are from out of town.  I don't know, since I'm not.

As for your ?? about other types of tests, he just does the ones I mentioned in addition to the blood tests and EKG, because from his research he is able to determine whether you have this viral cardiomyopathy or not from just these few tests. Having said that, if he feels from your history, that you need other tests, he will also schedule these.  For instance, I have Hashimoto's Thyroiditis so he also drew blood to see if my meds were doing the job.  Unfortunately, he can't do all the tests in one day.  I wish he could for those of you who are from out of town.  I know other specialists who see out of town patients have the same problem with scheduling.  They all try to do what they can, but there are so many factors that have to be considered, such as, the length of the test, the availability of the lab or technicians, the prep for the test, whether or not it can be done at the doctor's office or must be done at a lab or hospital, how many other patients are getting the test done, etc. 

I had to go to NY to see a neurosurgeon because of my Chiari/Syringomyelia and he did his best too, but I was still there for several days getting tests done and then seeing him.  So, I guess it's just how things are when we have these conditions that require special testing and traveling long distances to see the specialists who handle them.  May I ask where you are coming from?

Wish there was a way to expedite things as I know how hard it is to wait and how difficult it is to travel so far for testing and consultations.

Hope I've helped answer your questions.  When is your first visit?

Take care,

Musicgirl

Posted 9/13/2006 3:14 AM (GMT 0)
MusicGirl, you have been most helpful.  I am flying in from Colorado, and I see him on this coming Friday morning.   I don't mind making a couple of trips to see him (he certainly sounds worth it), though it would be nice to schedule all of the labs back-to-back within a couple of days of each other.  I am dragging my father out there with me to see a Tigers game, and he will visit with some relatives while we're there, so it should be more than just a doctor's visit anyway.  I am bringing previous results of echos and a holter with me, as well as a tilt table test (if I can get it), that I made my cardiologist do, because I, too, was convinced that this illness has a major cardiac component.  I had asked you about other tests just from my reading of Dr. Lerner's research, but this may be all he needs.   Thanks again.

BillyJack 

Posted 2/4/2009 12:10 AM (GMT 0)
hello. i post regularly on the immunesupport message boards. i have been seeing dr. lerner in MI for a year now and did improve a little but declined again. i am very, very sick and have had CFS for over 16 years now following EBV infection.

i am trying to contact as many lerner patients as i can for moral support and to compare notes.

musicgirl...i think we may have emailed before but i am not sure..i would very much like to talk if you don't mind.

my email is: [email protected]

if anyone who is seeing dr. lerner or taking antivirals for CFS could contact me, i would appreciate it greatly.

thank you
sue
✚ New Topic ✚ Reply
12