Dr. Charles Lapp

[CallieAndToby]

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.

I had like 4 appt's. And I think tests should be run initially before a treatment plan is layed out. No tests were ever requested.

He did do a tilt table test but told me what he saw he had actually never seen, very rare, and that I certainly have dysautonomia but he didn't know what. So that wasn't treated either. I had to go to a dysautonomia specialist he looked at the results and knew immediately I had: hyperadrenic pots . It's different from regular POTS, I have tachycardia all the time, even when lying down.

 

[CallieAndToby]

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.

What type of practitioner did you see who did all the other labs? I think b/c my case is so dang complicated, I need far more testing than I've had.

 

[BEG]

The last I heard from friends who see Dr. Lapp is that Dr. Black is still there.

There are several of us forum members in close proximity to each other -- just mentioning it. Think we have all been to Hunter-Hopkins probably because it is close by.

I haven't been there in a number of years. I do honestly believe that had I continued with regular and expensive visits all these years, I wouldn't feel any better than I do now. Dr. Lapp locked onto some personally stressful issues I had going on at the time, and diagnosed me with depression. His conclusion was that's why I didn't get any better. I see it very differently. My body is so sick that I can no longer handle stress. Fix my body, and I can handle anything.

No, there was nothing he had to offer me. I found an extraordinarily bright GP who accepts my Medicare advantage plan. Of course he isn't up to date on the latest ME/CFS research, but he is certainly open to whatever I bring with me to the office.

I've also held the belief that why test for something that doesn't have a treatment? You can be armed with all sorts of information about your body, but if nothing can be done about it, what does it matter?

I don't know if it's still the case, but in the past Dr. Lapp didn't believe in a lot of expensive testing.

 

[AFCFS]

What type of practitioner did you see who did all the other labs? I think b/c my case is so dang complicated, I need far more testing than I've had.

I eventually ended up seeing a one that is willing to look at things in a very holistic, but seemingly "not nutty" way. I have only seen this one once and am waiting for a follow-up on testing. My insurance deductible had been met this year, so testing was more financially viable to me. But was pleased that the provider was willing to think a bit outside the box and spend some time in reviewing what other providers had done. If you want the name, I can give it to you in a PM. As mentioned, I had only seen this provider once and am hoping for some benefit, so really do not have much of a history to work off of and also do not really know much about their new patient policies, as I was referred by another doc that had too long of a waiting list to be seen.

 

[MishMash]

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.

We really need these success stories to come forward and present their cases. It would benefit the patient population at large.

More than that, it would benefit the bottom line of the Hemispherix Biopharma, the makers of Ampligen. They have been teetering on the edge of fiscal disaster for many years now.

Any kind of quantifiable data, showing dramatic improvements, or cures, should have been duly recorded and presented to the world. Their own stats show only very modest increases in patient improvement. I don't understand the discrepancy between HB's own reporting, and self-reporting by vastly improved patients.

 

[MishMash]

I haven't been there in a number of years. I do honestly believe that had I continued with regular and expensive visits all these years, I wouldn't feel any better than I do now. Dr. Lapp locked onto some personally stressful issues I had going on at the time, and diagnosed me with depression. His conclusion was that's why I didn't get any better. I see it very differently. My body is so sick that I can no longer handle stress. Fix my body, and I can handle anything.

No, there was nothing he had to offer me. I found an extraordinarily bright GP who accepts my Medicare advantage plan. Of course he isn't up to date on the latest ME/CFS research, but he is certainly open to whatever I bring with me to the office.

ME/CFS is a difficult disease to treat. I have noticed several CFS specialist guru docs sliding into grumpiness, or into a "let's blame the patient" or "you just don't want to get better" mentality. To me, this is a sign of burn-out, b/c it is such an impossible disease to ameliorate. We are all living proof that there is very little that can be done. To them, every patient is an exercise in frustration. Over years, that's going to take its toll. And probably means the doc should just go back to giving flu shots and physicals to high school students before football season begins (which is what 90% of Georgia docs do).

 

[CallieAndToby]

We really need these success stories to come forward and present their cases. It would benefit the patient population at large.

More than that, it would benefit the bottom line of the Hemispherix Biopharma, the makers of Ampligen. They have been teetering on the edge of fiscal disaster for many years now.

Any kind of quantifiable data, showing dramatic improvements, or cures, should have been duly recorded and presented to the world. Their own stats show only very modest increases in patient improvement. I don't understand the discrepancy between HB's own reporting, and self-reporting by vastly improved patients.

They have though. One of them has been speaking/testifying in front the of board for years, relentlessly. I recently heard her on youtube when I was searching ampligen and FDA, she testified by phone in that particular video (back in June or July); it was powerful but as she was speaking one of the men looked terribly bored typing on his iphone. There were a lot of testimonies last week. Another friend of mine has been writing to the FDA for years not to mention her personal blog about it all. I don't know what to say other than they have been getting it out there as best they could, but the videos I recently watched on youtube don't even have any comments or many views............................ I've been reading a blog "the new ampligen diaries" which documents each and every infusion down to the end of treatment. But yea just look on youtube, people have been testifying for years either face to face or by phone or letter.

 

[MishMash]

They have though. One of them has been speaking/testifying in front the of board for years, relentlessly.

Callie,
I hope you get to try it. You have convinced me you are very sick, and you deserve some breaks in life. I'm not anti-Ampligen; I'm pro-Callie having a shot at getting better.

My only caveat is I wouldn't want to see you, personally, shell out massive funds to pay for it. Or go into massive debt, from which you will never recover. That would be like spending four years in college and getting a Sociology degree (that was a joke, folks). Be it from an insurance company or another trial, somebody else should foot the bill.
But I hope you get your turn.

 

[CallieAndToby]

Callie,
I hope you get to try it. You have convinced me you are very sick, and you deserve some breaks in life. I'm not anti-Ampligen; I'm pro-Callie having a shot at getting better.

My only caveat is I wouldn't want to see you, personally, shell out massive funds to pay for it. Or go into massive debt, from which you will never recover. That would be like spending four years in college and getting a Sociology degree (that was a joke, folks). Be it from an insurance company or another trial, somebody else should foot the bill.
But I hope you get your turn.

Aww, that was really nice!! I love the line "I'm pro-callie". hahahahah

Well yea it's far too expensive and not everybody gets better so I couldn't do that to my mom, I feel guilty enough. I might consider trials but that in itself is too expensive with having to move there and all. BTW my brother majored in geography, but he's working on a farm in France cleaning up poo, can't find a real job, LOL (true story).

 

[taniaaust1]

I had like 4 appt's. And I think tests should be run initially before a treatment plan is layed out. No tests were ever requested.

He did do a tilt table test but told me what he saw he had actually never seen, very rare, and that I certainly have dysautonomia but he didn't know what. So that wasn't treated either. I had to go to a dysautonomia specialist he looked at the results and knew immediately I had: hyperadrenic pots . It's different from regular POTS, I have tachycardia all the time, even when lying down.

oh wow... it never fails to amaze me how most of our ME/CFS specialists arent fully aware of the kinds of dysautonomias we get, that is even if they were aware at all. (I saw 6 CFS specialists, only one has a basic awareness of POTS). I have hyperadrenic POTS along with having the low blood volume kind too (Im on Clonidine and Florinef for it)..... hyperadrenic POTS isnt at all uncommon in ME/CFS

 

[taniaaust1]

We really need these success stories to come forward and present their cases. It would benefit the patient population at large.

More than that, it would benefit the bottom line of the Hemispherix Biopharma, the makers of Ampligen. They have been teetering on the edge of fiscal disaster for many years now.

Any kind of quantifiable data, showing dramatic improvements, or cures, should have been duly recorded and presented to the world. Their own stats show only very modest increases in patient improvement. I don't understand the discrepancy between HB's own reporting, and self-reporting by vastly improved patients.

Its the huge success stories many of us have heard about from patients on that drug in which make many of us so want this drug to be approved. This drug has done amazing things for some of the very severe group of patients eg got wheelchair patients out of their wheelchairs and able to walk again (on stopping the drug thou they usually crashed and ended up back in their wheelchairs).. if you read the history of the early trials and the stories from the patients in that (some of those stories were posted online throu the patients themselves).. there are some astounding stories of just how well this drug works for some. Once the drug was stopped, some of those patients put on a HUGE FIGHT to get special permission to keep taking it as without it.. they just couldnt function as they went back to how they were before. It also got patients who had such severe brain fog that they were unable to communicate well.. back to being able to communicate and think.

One can truely say this drug gave "life" again to "ME" patients (Id think it was that group this drug was helping) who werent really functional before.

 

[CallieAndToby]

Its the huge success stories many of us have heard about from patients on that drug in which make many of us so want this drug to be approved. This drug has done amazing things for some of the very severe group of patients eg got wheelchair patients out of their wheelchairs and able to walk again (on stopping the drug thou they usually crashed and ended up back in their wheelchairs).. if you read the history of the early trials and the stories from the patients in that (some of those stories were posted online throu the patients themselves).. there are some astounding stories of just how well this drug works for some. Once the drug was stopped, some of those patients put on a HUGE FIGHT to get special permission to keep taking it as without it.. they just couldnt function as they went back to how they were before. It also got patients who had such severe brain fog that they were unable to communicate well.. back to being able to communicate and think.

One can truely say this drug gave "life" again to "ME" patients (Id think it was that group this drug was helping) who werent really functional before.

Yea my friend who got well is starting to get sick again without it. I really feel for her. Hopefully she can get into another trial.