Success Rates with top doctors?

[nina_online]

I am wondering if anyone has a sense of the success rates of the various top docs. I realize there is no magic bullet and recovery is complicated by the fact that everyone is different and that CFS is likely a multifactorial disease and possibly not even a single disease.

So, I'm curious (and I'm new to treatment though not to symptoms), are the top doctors able to recovery (cure? Or even just significantly improve) a significant number if patients? Or are they just considered top doctors because of their knowledge/commitment. (I mean, in this field it's easy to have low standards. I'd be happy if there were a single doctor in my town seriously dedicated to CFS. )

And who are the top docs?
Paul Cheney, Ashville, NC
Kenny de Meirleir, Belgium
Nancy Klimas, Miami
who else?

I am also interested in discovering which (European) countries have the best approach to this disease. I don't trust the CDC, and I fear that the American medical system will not make much progress on CFS because its interests (big pharma, liability) are contrary to the issues of environmental toxin loads and non-pharmaceutical treatments.

Thanks for any input or leads to more info.

Nina

 

[Cort]

That it is a great question!

you can also throw Dr. Peterson at the Whittemore Peterson Institute, Dr. Enlander in New York, Dr. Lapp in North Carolina, Dr. Teitelbaum (online), Dr. Holtorf in Southern California, Dr. Chia in Southern California, Dr. Lerner in the Midwest, Dr. Maes in Belgium, the Fibro Fatigue centers in the US.

Plus we now have some mind/body treatments that are very effective for some patients: Ashok Gupta's Amygdala Retraining Program and Phil Parker's (?) Lightning Process. Let's not forget Bruce Campbell's courses on pacing/living within one's energy envelope.

Of course there are many doctors treating this disease who are just known in their local area.

But how good are they? My general sense is that they're probably all pretty good at helping and sometimes each of them to hit a homerun. Sometimes they probably all screw up the patient or two as well. Obviously there are few guarantees.

My personal thoughts on starting out treatments is to get your activity level to to what it should be - which probably means reducing it - focus on getting good sleep - and try to identify situations and thoughts that throw your system into turmoil and try to deal with them more effectively. Do that while you're checking out these other treatments - I think it can only help.

Always check out diet - since for a few patients changing their diet can have major effects.

 

[mojoey]

Peterson

I have an appointment with him next week. Does anyone know what his approach is these days? In light of the WP Institute Research, I would expect that he's much more into immunomodulation than AVs now

 

[mojoey]

Please keep in mind

Those are the most famous and well-known doctors, not necessarily those with the highest success rates. Many CFS docs do not publish or do research. They just practice. Take Mike's doctor as an example.

I've seen a number of doctors on that list. Doctors that publish or research are much more likely to see their current protocols through. Although Cheney is now doing stem cells and CSF, he spent years telling us to re-breathe our own carbon dioxide. Chia is still really into enteroviruses, and I would wager that only a small subset of CFS is caused by enteroviruses. Lerner is still relying largely on antivirals and now ABx since he is treating lyme disease. Holtorf tries to cover all the bases, and I get the feeling that although superficially he is holistic, that's only because he appears to cover all the biochemical holes in the body. Many patients feel better, but they quickly relapse after they can no longer afford his exorbitant treatment plan.

So my point is: many of these doctors' reputations precede them. They have all helped the CFS community make strides toward finding the cause in their own ways, but don't get discouraged if you cannot travel or afford to see them.

 

[Cort]

I think Joey makes an excellent point. For years I bemoaned the fact that I would probably never be able to see Dr. Cheney (and therefore would probably never get well!). At one point I did get the opportunity to see him; not only did I not get well but ended up going bankrupt!

None of these doctors are miracle workers. Dr. Peterson apparently completely cured one guy using Vistide but I know of patients who have been seeing Dr. Peterson for decades who are still in the thick of it all. People with the means have probably seen all these doctors and many of them are not well.

You just hope you're the one. Like Dr. Klimas said "we see enough patients get well to be encouraged but not enough to really know what were doing" (or something like that).

 

[Michael Dessin]

Peterson

Think he's still doing AV's with amino IV's.

 

[Cort]

Hey Joey good luck with that Peterson appointment! I know someone who just saw him - she was very impressed. Let us know how it goes.

Try the Search tab on the menu bar and click Posts - and you'll bring up some posts on him. Good luck again

 

[Aftermath]

Treatment Success

Nina,

By the tone of your post, you seem to have a pretty good handle on things. This is an illness with an unknown cause. It may be more than one illness with overlapping symptoms. Until the cause can be pinpointed, the chance of getting substantial help from any doctor is small, as they are essentially trying to pin the tail on the donkey.

I think Joey makes an excellent point. For years I bemoaned the fact that I would probably never be able to see Dr. Cheney (and therefore would probably never get well!). At one point I did get the opportunity to see him; not only did I not get well but ended up going bankrupt!

I am willing to bet that for every person that is cured--or even every person that experiences an 85% remission--one hundred do indeed go bankrupt, or close to it.

It's very difficult not to keep seeing doctors, as there is a tremendous impetus to spend one's last penny hoping that they will be that one in a hundred. Still, in all likelihood, you are throwing your money down the drain. These people mean well, but right now, they are simply taking shots in the dark.

With regard to the list of physicians, I would add Dr. Susan Levine of New York City to that list. There are a ton of negative posts about her on other forums, because she tells patients like it is. People don't like to hear "there is nothing anyone can do for you" and "unless there is a breakthrough, you are unlikely to be cured of this illness. Nonetheless, what she is telling people is 100% true.

She also charges some of the most reasonable rates of any physician dealing with this illness.

Bottom line, I don't spend any more of my money on doctor visits (I've seen them all anyway). The answer for us right now is to participate in research studies, and most importantly, to band together with what little energy we have to fight for real research funding.

 

[Victoria]

What about the most important "doc" of all?

Don't forget the most important "doctor" of all - yourself.

Of all the specialists & doctors you're referred to, I don't believe many patients think of their own input into these puzzling & usually very debilitating syndromes.

I sincerely believe that you need to educate yourself & gain some understanding of the varied symptoms & treatments.

Be pro active. Get involved. Try to develop a network (of fellow patients).

Dont' leave it up to the "top Docs" to take your hand & lead you down the path. You don't need to be medically qualified or super intelligent to listen to your body & observe changes (or improvements).

Being in tune with your body, & gaining an overview of how it works, will greatly contribute towards your progress down the path.

And even if nothing works, reading & research gives you something to keep your (often foggy & confused) brain active.

Victoria

 

[Cort]

Good points Aftermath and Victoria!

We simply need to get more research funding! Imagine if we could increase the WPI's budget tenfold: that's only 10 million dollars! A pittance in the medical world. 10 million dollars would triple the funding the NIH spends on CFS. Ten million dollars is almost a rounding error in AIDS funding. We are trying to learn about a complex disease while spending almost nothing. Its no wonder that we haven't made much progress. Getting sufficient amounts of research funding is the key to OUR FUTURE; there's just no way around it.

That's I hammer again and again the need to build the CFID's Association into a strong organization that has clout at the federal level - that's where the money is - about 40 billion dollars spent by the NIH this year! That's the pot of gold we need to get into. The CAA is the ONLY ONE trying to get at that pot. It's a darn shame.

I agree with Victoria that maybe the best thing you can do is learn to listen to your body and above all, if you haven't, adjust your activity levels appropriately. I question how well anything will work if you're slamming your body with too much activity - its just too much stress.

I would expect you would receive help from whatever doctor and if you're lucky an actual cure- but I think most people only receive help (and unfortunately, at a rather high financial cost).

 

[susan]

I agree with Victoria. We have to help ourselves and we do this from learning from one another. I see people come to support groups waiting for the Docs to give them the answer.....no interest in their own inquiry about CFS.
My specialist DR. with 600 CFS patients and himself with FM worked till 8pm most nights dedicated to us and his illness only for his personal life to break down and leave him unable to work due to his symptoms.

I always say to people , " when do these guys get time to go home and learn any new research or follow any pattern of treatment when they are in surgeries all day". I know a lot of it is guesswork..experimentation. I know for a fact that some of us would go to to him and tell him something is helping knowing he will transfer that to the very next patient. He was open to learning from all of us and never apologised for it.. My local MD who also has FM/CFS asks me every time I see him f I have found the cure for him. He is too busy to research.

Heard and interview on the radio the other day from the head honcho of the DRS Neurological ASSoc say that 90% of what he learnt in University in the 80s has no truth today. He said he learns from every patient who walks into his door.

I am on to mind/body and other modalities now. I have been such a guinea pig for 21 yrs, over drugged, turned me into a temporary Parkinsons patient from incorrect mix of drugs and so on......no more.

 

[Frickly]

top docs

I consider my doc, Patricia Salvato in that list of top docs. She has helped me tremendously and I am still improving. I never thought I would be excited to be able to clean my house, fold the clothes or make dinner. Also, she does not charge anymore than an average doc and takes insurance. My glutithione/ATP injections are only $10 per week.

However, I do agree with Victoria. Now matter how much faith you have in your doctor you have to take control of your healthcare and never put all your "eggs in one basket". I am hoping that this treatment will be a cure for me but not counting on it. I am learning as much as I can in case I take another turn for the worse.

I think the biggest obstacle for many of us in this disease is that it is so complicated. I think many people feel overwhelmed when researching CFS and may not feel that they can grasp it all. This has certainly been difficult for me but I don't give up easily. Do we have a list of CFS docs on this site. I will have to check.

 

[SDD1244]

I have to thank Prof. Garth Nicolson and other physicians who have researched mycoplasma (L-form bacteria) infections in CFS patients. Although I switched from antibiotic therapy to natural formulas (one of the brands that Michael Dressin uses), I have made significant progress.


http://www.immed.org
http://bacteriality.com/

 

[nina_online]

I consider my doc, Patricia Salvato in that list of top docs. She has helped me tremendously and I am still improving. I never thought I would be excited to be able to clean my house, fold the clothes or make dinner. Also, she does not charge anymore than an average doc and takes insurance. My glutithione/ATP injections are only $10 per week.

However, and never put all your "eggs in one basket". I am hoping that this treatment will be a cure for me but not counting on it. I am learning as much as I can in case I take another turn for the worse.

Gosh, I don't know if I should say this of not. Both my sister and I saw Salvato, and yes, it's a hopeful start to get some energy via ATP and glutathione. But the most meaningful long term benefit I got was reading the paper she handed me, which was Rich's paper outlining his theory on partial methylation block and glutathione depletion. It led me to learn about Yasko and to read his paper outlining his proposed treatment. I am now on The Rich/Yasko protocol. Rich and Amy Yasko do not think glut/ATP is a cure, rather it gives you some benefit while taking it. Rich's protocol is intended to fix the methylation block that is causing low glut and ATP. I called Salvato's nurse to see if I could get some of the testing Yasko recommends, and she had never heard of Yasko. So I feel Salvato is a one trick pony. However, I agree that the fact the she takes insurance is fantastic.

 

[Cort]

How's it going on Rich's treatment?

 

[KC22]

SSD1244

I saw where you have improved with your mycoplasma. Do you think the antibiotic worked or the natural formula? Could you please tell me the name of the natural formula?Thanks!!

 

[SDD1244]

KC22,

Both the antibiotics and the natural formulas have helped. IMO.. the natural formulas (the right ones) are superior to antibiotic therapy (for obvious reasons).

Let's see... after 6 months on antibiotic therapy (Marshall Protocol), I noticed that my intolerance to gluten had disappeared. I also recall having severe herxing (detox) symptoms one day and had felt fantastic the following day ! It was these few great days or moments that kept me doing the treatment... it is so nice to have a taste of what it feels like to be healthy. After I switched to the UNDA and PLEO homeopathic formulas, I noticed that my digestion was better and my 24/7 muscle aches were gone. In addition, I rarely have the weakness now and have more stamina on good days. I also rarely have POTS symptoms anymore.

The treatment that I'm doing can take years, but I realize that I've been ill for many years... but the pay off is HUGE. You can find a list of the homeopathic remedies that I'm taking here: http://forums.aboutmecfs.org/showthread.php?t=129

If you are interested in this therapy, you definitely need a physician or practitioner guiding you. Although these formulas are natural, I assure you that they are quite powerful and the detoxing symptoms can be rough.

You might also find this video presentation about bacteria in CFS and other chronically ill patients interesting. The woman giving the presentation, Amy Proal, has CFS herself (or had it ?) and after antibiotic therapy.... she went from being bedridden to now traveling around the world, promoting the MP and discussing these stealth pathogens and their role in chronic illnesses.


Notes from the 2009 International Congress of Antibodies

http://bacteriality.com/2009/06/11/ica/

 

[KC22]

Hi SDD1244,

Thanks for the information. I went to your site about unda. I am going to read more about that. I do homepathics and pleo and have done the Nig, but not the other ones.

I am on doxycycline right now and it has helped me to a point. I, too, had tachycardia and since being on valcyte, valtrex and doxy, it is gone.... I am not sure which one did it.

I am going to check out the Marshal Protocol. I have heard about it, but haven't really studied it. I will read the notes from the 2009 International Congress of Antibodies. My antibodies for mycoplasma are sky high... 1622 on my last visit. The strange thing is my numbers aren't coming down, but I have seen improvement. My fever is gone, 3 years worth, and my heart issues are improving.

I use both alternative and "western therapy." I am of the mindset whatever works, I will try.

Thanks for your reply. It has a lot of good info to check into...

What would you say your energy level is right now??

 

[Frickly]

Nina

Gosh, I don't know if I should say this of not. Both my sister and I saw Salvato, and yes, it's a hopeful start to get some energy via ATP and glutathione. But the most meaningful long term benefit I got was reading the paper she handed me, which was Rich's paper outlining his theory on partial methylation block and glutathione depletion. It led me to learn about Yasko and to read his paper outlining his proposed treatment. I am now on The Rich/Yasko protocol. Rich and Amy Yasko do not think glut/ATP is a cure, rather it gives you some benefit while taking it. Rich's protocol is intended to fix the methylation block that is causing low glut and ATP. I called Salvato's nurse to see if I could get some of the testing Yasko recommends, and she had never heard of Yasko. So I feel Salvato is a one trick pony. However, I agree that the fact the she takes insurance is fantastic.

As much as I hate to , I am inclined to agree that Salvato is a "one trick pony". The fact remaines that if it were not for her I think I would be in some serious trouble. I also learned about Rich from her pamplets and was already familiar with Amy Yasko since my son has apergers and is seeing a DAN! doctor. I am beginning to see the things that trigger my illness and starting to notice how supplements effect me, leading me to beleive that I, do indeed, have a methylation cycle block. I don't think I would have noticed any of this before as I felt so bad all the time. Now I can see that chemicals trigger severe muscle fatigue and sickness. I think I probably had this issue for along while but did not notice it because I always felt this bad.

Anyway....It is a good start. I do feel that it has given my body a jump start but I have some more work to do. I do take many supplements to "bring it on home" so to speak.

Take care,

 

[SDD1244]

B]KC22[/B],

The main problems I'm dealing with now is extreme fatigue (although somewhat better) and cognitive problems. From what I understand, after you fight the infection (which I think I'm still doing), you need to use nutritional supplements to help restore the mitochondrial electron transport function and reducing moderate to severe chronic fatigue. Here is some Prof. Nicolson's literature on lipid replacement therapy:

http://www.immed.org/publications/Nicolson_ElllithorpeJCFS_copy.pdf

The Marshall Protocol can be really rough. It is difficult because you have to rely on your memory as to when you took your last medication and you have to be extremely careful when it comes to dosing. For awhile there, I was taking 1/16th of a capsule ! I remember 3 weeks of uncontrollable herxing symptoms and it was horrible. (I'm being honest with everyone here). I prefer the homeopathic formulas and believe the UNDA and PLEO formulas are just as effective as antibiotic therapy... and no more uncontrollerable herxing symptoms !

I hope you (and others) got to watch that video presentation by Amy Proal. They showed a slide of cells from a patient who has CFS... it was pretty wild. I think all medical students should be required to see those things, especially since I hear that they aren't really educating medical students about CFS.