This reply is three yrs late, but are you allowed to tell us who exactly said the Ampies were having great success at Lapp's? Why have I never read a single Lapp patient talk abt their ampligen on here? It's just frustrating hearing reports fr Lapp's office all thetime saying they're having great success with ampligen but not actually hearing their PATIENTS talk abt it.
Dr. Charles Lapp
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This reply is three yrs late, but are you allowed to tell us who exactly said the Ampies were having great success at Lapp's? Why have I never read a single Lapp patient talk abt their ampligen on here? It's just frustrating hearing reports fr Lapp's office all thetime saying they're having great success with ampligen but not actually hearing their PATIENTS talk abt it.
When I called recently, the office reps were very nice on the phone, and said similar - that the clinic was having sussessful results with Ampligen. Dr Lapp apparently just got back from Japan, where he was speaking on CFS, they had a patient from Finland, one from New Zealand. Think they mentioned that Dr Lapp was one of the top two CFS specialists in the nation (what does that make Dr. Black?). And to be fair, it is my understanding that Ampligen is not the only approach they use, that a patient has to meet certain criteria, etc. It all sounded very appealing and like Dr. Lapp is in high-demand.
But, then, there is also this recent article on Hemispherx Biopharma (HEB) and Ampligen to consider:
The article then seems to bolster this perspective:
- I suppose if one were a true optimist in regards to Ampligen, they could buy stock now and expect to pay for their Ampligen treatment on the uptick.
Yes, ditto that (sorry to quote a bad radio talk show host).
This is why I have developed an entirely cynical view of these self-appointed CFS specialist docs. They don't know anything any other ordinary internist doesn't know at this point.
They make up alot of unsubstantiated hocus pocus, and push the poor patient out the door with the handful of vitamins, or some such worthless junk. I have been through this mill before, so I have a little experience.
I probably wouldn't care, except these doctors invariably charge astronomical fees, always cash only. This is usually extracted from poor patients who are mostly living on the government dole; patients who were formerly independent, professional people, now delegated to crawling to a bunch of medical mountebanks and soothsayers.
I used to get the "CFIDS Association of America" newsletter (remember that? there was actually a paper version). Even back then there was a kid gloves, handle-with-care attitude towards these self-proclaimed specialists. Never questioning these docs, never asking "what have you actually accomplished?" There is a fear of "what if doctor X decides he doesn't want to treat patients anymore? Then what will we do?" This desperate fear is how they get away with charging $400 /hour.
As with Lapp, there is very little sunshine allowed to be shown on the specific outcomes of these incredibly expensive treatments. Sitting in the waiting rooms, and talking to the totally desperate mothers, bringing along a very sick kid, or a middle-aged patient who has been coming back for years, expecting a different result everytime, you get a sense of how these docs leverage outrageous fees out desperate patients.
We need new blood, new scientists and doctors ready for a good challenge. We have had the same cadre of ME/CFS specialists now for the last 30 years. Hopefully somebody new will step in.
Sushi
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MishMash
Sure, we have all had some very bad experiences with docs and spent a lot of money for not much in the way of results.
But, still, I don't think you can lump all ME specialist together and make generic statements about their motivations, treatments and outcomes. Each has his/her own approach and many do significantly help a notable percentage of their patients. I am one who has been helped a great deal. I know others who are back at work or school.
True, nothing is working for "everyone," partly because we are so heterogeneous. But a percentage are helped by Ampligen, another percentage by anti-virals, on and on, with ribuximab, lyme treatment, GcMAF etc.
Yes, it is a risk to try an experimental treatment and it is important to talk to others who have tried that treatment, do any diagnostic tests that might predict success or lack thereof, but in fact some people are getting significantly better from treatment, either through specialists or other practitioners who have taken a special interest.
Not all doctors who specialize in ME charge exorbitant rates, and not all push their own combo of supplements that they might give them personal gain.
Yes, there is trouble out there in "doctor-land," but it is not a universal disaster.
Sushi
Sure, we have all had some very bad experiences with docs and spent a lot of money for not much in the way of results.
But, still, I don't think you can lump all ME specialist together and make generic statements about their motivations, treatments and outcomes. Each has his/her own approach and many do significantly help a notable percentage of their patients. I am one who has been helped a great deal. I know others who are back at work or school.
True, nothing is working for "everyone," partly because we are so heterogeneous. But a percentage are helped by Ampligen, another percentage by anti-virals, on and on, with ribuximab, lyme treatment, GcMAF etc.
Yes, it is a risk to try an experimental treatment and it is important to talk to others who have tried that treatment, do any diagnostic tests that might predict success or lack thereof, but in fact some people are getting significantly better from treatment, either through specialists or other practitioners who have taken a special interest.
Not all doctors who specialize in ME charge exorbitant rates, and not all push their own combo of supplements that they might give them personal gain.
Yes, there is trouble out there in "doctor-land," but it is not a universal disaster.
Sushi
Please name a CFS specialist doc who accepts medicare? Which ones are not "cash only"? Please be specific.
Sushi
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I see a specialist in another country so I am not so familiar with the insurance practices of US doctors, but Dr. Enlander accepts Medicare and Dr. Klimas and Dr. Rey plan to in their new clinic. Dr. Kogelnik takes insurance but I don't know whether he takes Medicare. Maybe his patients can report. Other members probably know of others.
Sushi
Sushi
My point is I find it weird to say the least that not one Lapp PATIENT (not Lapp himself/his office) seems active over the years in talking on PR about ampligen with dr Lapp. I only say this bc I'm an Ampie myself (finishing soon).
I find it weird also, but not uncommon, as their also seems to be a bit of an "air of mysticism," or perhaps "cynicism" about Cheney on the forums. When the the office rep asked me how I heard about the clinic, I mentioned an Internet search and then the Phoenix Rising forums, which did not seem to register with them. I had to explain it was an online forums for CFS.
I tend to agree with MishMash
My nuance of perspective is that perhaps through testing, and some trial, there might be a chance that something else is found that actually has a viable treatment plan/cure and does not require having more money than God to get the fix. Alternatively, thinking the best route is maybe to dump all expectations I had of life and start from scratch.
You will hear this same story over and over.
If you are new ME/CFS patient: please learn from the experience of people who have gone before you.
Ampligen is a phony medicine. It does not work. There was one gal, back in the late 90s, who was allegedly resurrected from her ME by transfusions of Ampligen. This story spread like wildfire. I was in a CFS support group back then. It was all the rage. It has proven to be a big failure. The company is desperately trying to get approval, inspite of the resounding news that it is a total flop. Stay away.
Don't waste your money on Valcyte, unless you hear in a proper investigation that it was successful. The stuff costs you $2000 / month and it doesn't do anything. If you are as rich as Bill Gates or Warren Buffett, of course, you can do what you want. I'm assuming this is not the case if you are on disability.
Dr. Montoya probably knows he's wrong about antivirals now, but doesn't want to completely give up the ship. If there were meaningful findings in his research-- we would have heard about it in the news by now. Just like XMRV, it's done, let's all move on.
As for evidence of efficacy: I'm not interested in any one-off situations, basically hearsay that "I heard that so-and-so's daughter was cured by Valcyte." That's not science, and we do not know the whole story. If fact, those kind of aprocraphyl stories just lead others to waste precious money. As we have read on this thread.
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Hi all,
For those of you wondering about Dr.Lapp's Ampligen patients - have you read Kelvin Lord"s blog series on his ampligen treatment. It may not have been clear from his posts but he is one of Dr. Lapp's patients and was infused at Hunter Hopkins Center. I have been a patient of Dr. Lapp's since 1993. I did a round of Ampigen for approximately 1 year that kicked me into a three year, almost miraculous remission. I relapsed two years ago and am currently infusing w Ampligen once more. For the subset of patients like me who are helped by Ampligen having access to it is a huge boon. I know hoe lucky i am to be able to afford it. I also know that it is a treatment, not a cure. Many of us "responders" will have to return for boosters periodically. I so hope it the FDA approves it this coming February so more patients can have access. Dr. Lapp, his researc coordinator and infusionist Wendy Springs, Dr. Black, and the rest of the staff are knowledgeable and compassionate and work very hard to help this disease get recgnized and treated.
Hi Amy, always nice to hear a positive experience. Even if "part of a subset" it may lend itself to research that addresses the super-set. Hope you keep us posted as to how things are proceeding and hopefully working out.
- am looking for to the day the FDA clears a CFS drug/supplement, approves it as OTC that requires a single dose, is 100% effective for everyone, instant on or overnight relief, without side effects, and cost less than an aspirin, which reminds me of this article: Aspirin Might Combat Common Viruses [Chronic Fatigue Syndrome and Fibromyalgia News]
I saw Dr Lapp today; was there about four hours. For about 2 hours, he went over my intake paperwork and medical records before he came in to see me. Then had a face to face and also exam for about two hours. Keeping in mind that it was essentially a "free visit" for me (insurance deductible met), I was very pleased with him for several reasons.
He did not offer an expensive cure, or even talk about Ampligen or other antivirals that apparently were not needed in my case. He thought that the blood tests I had going in were comprehensive enough; he did offer blood work for a few other things - an outside possibility of re-emergence or a never fully treated Rockey Mountain Spotted Fever, Lyme, a Ferritin level, etc., which I was glad for, to at least narrow possibilities.
I had previously had a neurosurgeon pick up on POTS. Dr Lapp did his own testing and confirmed similar opinion. The neurosurgeon had scheduled me for a tilt test closer to home in a hospital setting in Dec. I had asked Dr Lapp if he wanted to do his own, but he said it would likely be less expensive in the hospital setting, so he would just wait on their result.
All in all, he did a pretty good job of "corralling" a lot of tests and history and was not pushy. Where others have been pretty biased by their specialty, he seemed to be very open and accepting to all possibilities. He seemed to have a good respect for his limits and allowing other specialists to do their work and get reports back to him. Based on current info, he seemed inclined to think that my symptoms may be due to some spinal/CSF blockage issues, but wanted to wait for another MRI and some spinal x-rays, the tilt test, as well as the blood work he was doing before considering any additional treatment. He did take the time to go through a rather lengthy supplement list and make some suggestions there.
You could see his CFS experience come through when he would say things like "we have seen this work" or "no need for that," as well as how he drilled down on symptoms and etiology. He was not pompous or arrogant by any means, and did not speak of or claim any successes, but he did seem interested in helping as he could.
Although he requires patients to have their own primary care physician, to me, it ultimately seems that Dr Lapp is the kind doctor one would like in this role, but without the cost. When I was younger, I had GPs that would think nothing of spending 45 min to an hour with you. Today, it seems that 10-15 minutes is about max and even then have had primary care doctors make me think I was wasting their time - sign of the times.
Must say that his staff seemed competent and the woman who did my blood draw was a complete angel. This is not a defining factor for me, whether I see a doc or not, but it is always appreciated. At another doctor's office, the staff always seems sour, like they are chewing on a collective lemon; so I notice the difference. My opinion of Hunter-Hopkins is from one visit, so not saying it cannot change.
He did not offer an expensive cure, or even talk about Ampligen or other antivirals that apparently were not needed in my case. He thought that the blood tests I had going in were comprehensive enough; he did offer blood work for a few other things - an outside possibility of re-emergence or a never fully treated Rockey Mountain Spotted Fever, Lyme, a Ferritin level, etc., which I was glad for, to at least narrow possibilities.
I had previously had a neurosurgeon pick up on POTS. Dr Lapp did his own testing and confirmed similar opinion. The neurosurgeon had scheduled me for a tilt test closer to home in a hospital setting in Dec. I had asked Dr Lapp if he wanted to do his own, but he said it would likely be less expensive in the hospital setting, so he would just wait on their result.
All in all, he did a pretty good job of "corralling" a lot of tests and history and was not pushy. Where others have been pretty biased by their specialty, he seemed to be very open and accepting to all possibilities. He seemed to have a good respect for his limits and allowing other specialists to do their work and get reports back to him. Based on current info, he seemed inclined to think that my symptoms may be due to some spinal/CSF blockage issues, but wanted to wait for another MRI and some spinal x-rays, the tilt test, as well as the blood work he was doing before considering any additional treatment. He did take the time to go through a rather lengthy supplement list and make some suggestions there.
You could see his CFS experience come through when he would say things like "we have seen this work" or "no need for that," as well as how he drilled down on symptoms and etiology. He was not pompous or arrogant by any means, and did not speak of or claim any successes, but he did seem interested in helping as he could.
Although he requires patients to have their own primary care physician, to me, it ultimately seems that Dr Lapp is the kind doctor one would like in this role, but without the cost. When I was younger, I had GPs that would think nothing of spending 45 min to an hour with you. Today, it seems that 10-15 minutes is about max and even then have had primary care doctors make me think I was wasting their time - sign of the times.
Must say that his staff seemed competent and the woman who did my blood draw was a complete angel. This is not a defining factor for me, whether I see a doc or not, but it is always appreciated. At another doctor's office, the staff always seems sour, like they are chewing on a collective lemon; so I notice the difference. My opinion of Hunter-Hopkins is from one visit, so not saying it cannot change.
I've been to the clinic and would recommend you see Dr. Lapp. I also had the tilt table test done there and supposedly failed it. Within three months of that, I was seen at Vanderbilt and all the test were normal and was told I did not have POTS like I had been told at HHC. Vanderbilt doesn't use the TTT anymore or they didn't with me. I was told is wasn't as accurate as other test they use. A second opinion is always wise
So, my opinion of Dr Lapp might be changing a bit. More toward:
After seeing him, I ended up seeing another medical practitioner, who claimed much less (and cost much less) but tested for much more. I guess I am at the point of asking why didn't Lapp test for this or that. After a slew of recnet blood tests by the new practitioner, I showed a lyme igm p41 ab present abnormal, iron binding capacity (tibc) and uibc low, chlamydia pneumoniae igg high, mycoplasma pneumoniae igg abs high, hhv 6 igg antibodies high. I know these must be evaluated in context, but now just thinking that Lapp may have been more thorough in his assessment/testing - especially for his touted expertise in CFS.
CallieAndToby
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I agree with everything you've said here. I can't afford seeing these doctors anymore. I think it's insane that they charge this much when we are all disabled and someone like me getting sick at 15, I never worked.
Where I have to disagree is that ampligen doesn't help. I know 5 people who got into the trials who were incredibly, unbelievably sick, and all improved by 80%, most seeing their POTS disappear. One is a good friend of mine who was bedridden for 15 years unable to even lift her head, she saw an 80% remission and is able to work though she is getting sick again. She tried everything else you could possibly try, everything, would have violent reactions to things that other people seem to tolerate fine. The first year was hell, but then she started seeing drastic improvement.
Dr. Lapp is very very nice and caring but his approach is to comfort the patient, that's it. That approach didn't work for me, I continued and am continuing to decline. I still can't sleep even though we tried xyrem and none of the other prescriptions helped like the head ache medications, didn't even touch my migraines. Dr. Rey accepted insurance for my first appt. but all phone consults are out of pocket.
I totally agree with your last statement about new blood. I wish someone as brilliant as Dr. Gahl and his team would take this on but right now they're only seeing patients who have extremely rare and FATAL illnesses. He's solved quite a few of them though.
CallieAndToby
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He didn't run any tests on me, none. I was at least glad Rey. did an extensive immune panel. I need more testing though. But I wondered why he didn't request any blood work???
Also not sure. The tests he did on me seemed were done after I encouraged them. I hate to speculate on motive, but maybe he has been around long enough to tag what kind of patient he wants to see and goes from there.
I think this is important to remember, some doctors are very likable despite their inability to treat. I had gotten into an augment at one point with a pdoc who seemed like nice guy, but was obviously paddling up the wrong stream with continued psychiatric diagnoses and med trials. At one point I just told him that for the money for a 30 minute appointment, I could get a 2.5 hour therapeutic massage and likely be better off. He really did not care for that, but since I was paying for his time, figured I was at pretty much at liberty to say what I wanted. So, I also like Lapp as a person but just think he should have jumped on some more testing.
heapsreal
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Immune panels etc even if they cant treat the issues can help varify our problems.
taniaaust1
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Maybe he would of requested more tests when you went again. Ive found that many CFS specialists run any tests they view as upmost importance on the first visit but then often follow these up with other tests on future visits. The whole thing can be a process.
August59
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Was Dr. Black still working there when you went?