Dr. Charles Lapp

starryeyes

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Dhea

Hi Susan,

I've also been to a top CFS specialist who cost way too much an hour. I tried DHEA but all it did for me was give me a new kind of awful acne. As soon as he saw that, the specialist said, "Wow, you really are sensitive to medication." And he promptly took me off it.

I'm wondering how it helped you if you could share.

Thanks,
tee
 

MEG

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Dr Lapp

What do I get for my $381/hour? Good question and I will post a report after I see Dr. Black/Lapp.

Aug59...tried to post a PM reply, but I am not sure it worked. Thanks for your reassurance that Dr.Black is so nurturing.
 

susan

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Hi Teeyay,
Did a boost to my adrenals...got me up out of bed. However I need extra boost with Isocort raw adrenal....this I had to find out for myself even tho I kept telling them I thought my adrenals were shot....needed hydrocortisone but they did not listen.

Last week I got a Methyl B12 shot......I cannot believe the difference. It was too much at 10mg and I am still coming back down...going to do the B12 pills under the tongue following Fredds advice on the hidden B12 post. I was singing in the shower the next day and shocked myself
 

MEG

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Dr Lapp/Exercise Testing

I am filling out a 30 page questionaire for Dr.Lapp/Black. I have a question...I have been given the information to expect tilt table and exercise testing on a treadmill. I am at the point that if I walk on a treadmill for 10-20 minutes I can expect a severe relapse for several months. (re:post cardiac stress test)
Has anyone had exercise testing with their specialist? How does the doctor handle the fact that you may have a relapse? Heck...how do I handle it?????? I don't want to be a "bad" patient and refuse testing, but this scares me to death.
 
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My goodness Susan

The last thing a ME/CFS patient wants to do, is FLOOD themselves with oxygen.

ME/CFS patients function at a much lower level than normal folks.

The body may not be able to handle that oxygen, causing oxygen toxicity, be very cautious!!

Also DHEA supplementation has been known to cause severe relapses in ME/CFS patients.

Methyl B-12 is hit or miss, could be great, could be horrible!

Mike
 

August59

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Marian - I don't think you will have to worry about the stress test, at least not at first. Depending on what current labwork you supply her with, she will probably check somethings, that are not on a typical doctors "To Do" list. My guess is, since this is your first visit, is she will check your thyroid (not just a TSH test that's useless by itself), iron/ferritin, B-12 and folate, Vit-D, DHEA-s and "viruses". I got the impression that Dr. Lapp or Dr. Black felt like the anti-virals worked well if "hormones" or vitamin/mineral levels were off. I had started Valcyte, but stopped when thyroid and Vit. D came back low. Started Armour Thyroid and Vit. D3 and re-started Valcyte after 4-6 weeks.
 

PoetInSF

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I am filling out a 30 page questionaire for I am at the point that if I walk on a treadmill for 10-20 minutes I can expect a severe relapse for several months. (re:post cardiac stress test)
Has anyone had exercise testing with their specialist? How does the doctor handle the fact that you may have a relapse? Heck...how do I handle it?????? I don't want to be a "bad" patient and refuse testing, but this scares me to death.
Everybody with CFS knows what a bad thing a relapse is and how precise your exercise threhold can be. I'm pretty sure they will ask you about it and be extremely careful with exercise test. If not, run like hell.

Good luck, and please report back. I'd be very interested in your experience with them.
 

MEG

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Dr's Lapp and Black

Aug59..I am trying to fill out the 30 plus pages of paperwork to turn in to Dr. Black before my appointment! Don't they know our brains don't work??????

Aftermath...great heads up on not destroying our retirement money or selling our homes for treatment yet...I also believe things are going to happen fast. I do however need an appointment with a specialist in CFS...my primary is concerned that I am deteriorating too fast. She is looking for guidance...good for her, huh???

Cort, I found Dr's Lapp and Black on this site...good on you...
Thanks
 

Sushi

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tilt table test

Hi Marian,

I got an "Oh no!" reaction when I read that they might want you to do a tilt table test. I had one and it knocked me out for a long time afterwards. I'd really question the need for that one, if she suggests it. Yes, it gives some very good info, but it was the hardest test I have ever taken--including cardiac stress tests. If you have ANS involvement, it absolutely puts the ANS into a tailspin.

Other friends who have had them say similar things. I came into this realm through a diagnosis of dysautonomia, so I know a lot of people who have had tilt table tests.

Sushi
 

starryeyes

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Hi Teeyay,
Did a boost to my adrenals...got me up out of bed. However I need extra boost with Isocort raw adrenal....this I had to find out for myself even tho I kept telling them I thought my adrenals were shot....needed hydrocortisone but they did not listen.

Last week I got a Methyl B12 shot......I cannot believe the difference. It was too much at 10mg and I am still coming back down...going to do the B12 pills under the tongue following Fredds advice on the hidden B12 post. I was singing in the shower the next day and shocked myself
Wow Susan, that's great! I'm afraid my body is too weak to handle any stuff like that now. I was doing much better back when I was trying stuff. That was about 8 years ago now.

Mike-- that's good info to know.

I also have to agree with those who say why do a tilt-table test? For that matter, why do an exercise test? What's the treatment going to be when you prove that you're not responding like healthy people would?
 

MEG

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Tilt Table

I have heard from several sources that the tilt table tests have put them into a relapse. Plus, I already know I have orthostatic problems, so why torture myself. I get flushed, dizzy, nauseous, racing heart when I stand still. I am not looking to them to prove anything for disability, as I already have it. Oh I don't want that test...i hope Dr. Black understands. What exactly do you know about what it does to us????
Thanks soooooo much!
 

MEG

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Tilt Table/Exercise

OK, I get it....

f they want to do any tilt table or exercize testing I will "run like hell" thank you very much, PoetinSF With my wallet!!!!!
I will report back on any/all info pertinent to our treatment. Sharing is good!and lot's going on re: new info.
 

Sushi

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Tilt Table

A "good" tilt table tests stresses every aspect of the ANS to the Max to try to get it to misbehave and thus be documented. I was lucky in that my doctor himself has POTS and doesn't believe that it is necessary to carry on the test till you pass out and told me to stop the test any time I felt I couldn't take anymore.

That moment was very clear and I remember calling out, "Get me down--now!" Then I lay there panting and writhing like a dying fish till they gave me apple juice to drink (you have to fast including water for the test--I mean, what do could they expect but the dying fish reaction when they start with you already dehydrated!).

I refused to do a second one.

Sushi
 

August59

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Hi Marian - I'm sorry I haven't been here much the last couple of days. I don't think they will do a stress test or a tilt table test, at least not on the first visit. They never did either one to me. I know it is a lot of paperwork, but there is a lot of it that I just didn't have answer for. So, I moved on to the next one and they never said a thing about it and I don't think they read it all either. If I remember right, as I was going through the visits and we were talking there were several times they would reference back to it when a particular symptom came up and they referenced back to it for the first 2 or 3 visits. I also think they use this an an exculsion (that's not spelled right!!) tool to get your diangnosis pinned down quickly. They are the only doctors in Charlotte, NC that will give you a diagnosis of "CFS/ME". I am actually from Rock Hill, SC (20 miles south of Charlotte) and before I ever got sick, there was a man from Rock Hill that had been to about 10 different doctors around here and he got nothing. One doctor finally referred him to Duke Medical Center and the way they put it was that he saw a "Chronic Illness or Disease Doctor" at Duke Medical. He spent a week there and before he left there they had made an appointment for him to see Dr. Lapp back in Charlotte because they couldn't diagnosis him or they wanted Dr. Lapp's opinion. I think Dr. Lapp is a consulting doctor for Duke Medical Center anyway.

Anyway, I wouldn't worry about those test. Especially, since you have been sick for awhile and you have a good primary doctor. Back to the paperwork, I think I would read through it and make tic marks by the things that are major problems for you and make sure you get those filled out first. Skim back through again in a couple of days and get the next priority things and if you don't get them all, let'em know that is how sick you are and couldn't do it all. That in it's self may mean more to them than half of what you write.

It's going to be a good time for you. Be sure and ask her what she thinks about the XMRV discovery and whether she thinks Ampligen will work. This might be a good opportunity for Hemipherex(?) ampligen pushed through the FDA. They might start footing the bill for it, especially since Hunter Hopkins is one of the few places that are allowed to use it. Hemipherex is probably still gathering ongoing data from them. This is your time too and you get to ask the questions as well and I would write them down to. I also think you will get an honest answer from her.
 

AFCFS

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Dr. Lapp's office, in Charlotte, NC, told me today that they are having incredibly sussessful results with Ampligen. He is licensed to use Ampligen for CFIDS, and does. Trouble is, when I asked about insurance, they told me they do not take insurance and he charges $381/hour. They were unable to quote me the Ampligen IV rates/visits. I, personally, have been very interested in trying Ampligen, but do not have the funds to afford Dr. Lapp. For any of you that may be interested, here is his info:

Charles W. Lapp, M.D. & Laura Black, M.D.
7421 Carmel Executive Park Drive, Ste 320
Charlotte, North Carolina 28226
Telephone (704) 543-9692
Fax (704) 543-8547
Hi Marian,
I understand the way you feel - I used to see Dr. Lapp and Dr. Black and received the best compassionate care that I have ever received from any doctor. They listened and responded with appropriate treatment. I never tried the Ampligen because it is still considered experimental and is dispensed on a "cost recovery" basis (in other words you have to buy it and pay for it to be administered). The last that I had heard was that the cost was approximately $2000/month for the Ampligen treatment. I was trying to get all of my other "labs" normalized before I tried it. My thyroid kept swinging from one extreme to another, my DHEA fell off the chart for some reason and my Vit. D dropped way down. I did try the Valcyte for awhile, but stopped when the above started happening. The Valcyte made me feel a little weird, but in general it was a positive period. The down side was I didn't get to stay on it long enough (maybe 3 months). I saw Dr. Black most of the time and I felt better during the year under her care than I had felt in the last 3 years. She is a wonderful doctor and a very caring person.
My insurance paid 60% until I changed companies, which had a HMO and it covered nothing and I just couldn't do it anymore.
FDA will approve Ampligen, that famous drug in search of disease, when Hemispherx demonstrates enough efficacy, I'm sure. Meanwhile, just what do you get in return for $381thr/hr from Lapp? And why is he not accepting insurance? Sounds suspicious to me.
So, I was considering contacting Hunter-Hopkins Center/Charles W. Lapp, M.D. & Laura Black, M.D. - they are within a couple hours distance. But I do wonder, aside from the Ampligen, which is out of most people's price range (including mine), what will the guy/gal do for $381/hr? It seems like I can get my regular integrative internist to manage things like DHEA/hormone type things, thyroid, vitamin levels, etc., and keep other blood work in range.

I don't like the idea of any doctor not taking insurance and then stating it like they do on their website:

Your insurance coverage is a matter between you and your insurer. Please bring your insurance card with you to each office visit to help us in preparing your claim for you to file. At the time of service, or very shortly thereafter, we will provide you with a statement of services performed, as well as a standard insurance claim form (HCFA 1500). It is your responsibility to see that the claim is properly forwarded to your insurance carrier.

- Just tell me you do not take it and do not want to be bothered with the overhead of processing it; don't make it sound like I have a personal relationship with my insurance company as one would with a spouse (e.g. between you and your wife/husband vs insurer).

So, is he worth it - anything else besides a $2000/month drug that is of merit, in comparison?

What really kind of ticks me off in a ranting kind of way is the $381/hour - could they not be content with $380/hour? Or is $381 the tipping price that the market will bear? Why not $381.99 and through in a pair of steak knives - that seems to sweeten the deal a bit.

Anyone have any further experience or advice with Hunter-Hopkins Center/Charles W. Lapp, M.D. & Laura Black, M.D?
 

August59

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The Hunter-Hopkins Center will give you all the papers necessary to file insurance as my fist insurance paid 65% of out- network - providers. My 2nd one was an HMO and virtually took no one. I believe also when you get into testing for cytokines, CMV, EBV, HHV-6. Multiple hormone test and especially re-testingon 3 month intervals a lot of insurances will not pay. After a few visits I would bet insurance would expect the doctors visit to be down to a level , which is probably 1 unit, which i believe is 15 minute which the doctor probably makes $25 max,

This something that needs to be confronted with the NIH and Obamacare that this and other disaeses are going to have to be allowed to be first all diagnosed and at this point the only way is through exclusion, but they are not going to want to pay for it. Then they will get the CDC to hurry a set of cytokines through that says diagnoses CFS with 99% accuracy and they will buy it off. I don't know of a researcher that has came up with a 99% accuracy.

I almost hate to say it, but it may work out better is to have more levels of orphan or "NORD" diseases that have been to rare to significantly find the cause much less treatment or a possiblle cure. This classification sure pay doctors on clinical hours used. They would then start taking insurance and we would more than like to start seeing good information coming in from the doctors and clinics. All I have been treated for the last 4 years are symptoms and I don't see that changing on disability. I had to act like I was half crazy to get my mental diagnosis that was what I needed to get my disability. They wanted to screw with me, so I played their game.

Hunter Hopkins Center, when comparing specialist, is pretty cheap. You can go the Dr. Cheney as he is not to far away, but that will be bewtween $7000 to $9000 for first visit. It all still boils down to in the insurance industry will not allow a doctor to properly diagnose someone with ME/CFS because it takes to too much time up front. I do not think Obamcare is going to help us one bit in this area. This is the time to be getting the message across to whomever should be getting it. Didn't Obama say that he was going to look into CFS? Was there are reporter prevy to this information. Have her write an article and see if our friend at the WSJ will not run it.
 

AFCFS

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Didn't Obama say that he was going to look into CFS?
Obama Takes an Interest in Chronic Fatigue Syndrome; could be good, but I will remain skeptical until direct results are seen and progressed.

Anyone happen to know if Lapp/Black get into the DNA polymerase or EBV dUTPase testing as mentioned on this post: Discovery could lead to faster diagnosis for some chronic fatigue syndrome cases, and well explained there in the article posted alice?
Source: Ohio State University
Date: November 14, 2012
Auteur: Emily Caldwell <caldwell.151@osu.edu>
URL: http://researchnews.osu.edu/archive/chronfatigue.htm


Discovery could lead to faster diagnosis for some Chronic Fatigue
Syndrome cases
-----------------------------------------------------------------
 

AFCFS

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Dr Lapp

What do I get for my $381/hour? Good question and I will post a report after I see Dr. Black/Lapp.

Aug59...tried to post a PM reply, but I am not sure it worked. Thanks for your reassurance that Dr.Black is so nurturing.
Well, it is now $398/hour for Dr. Lapp. I am not sure how they work it, but was told 2-3 hour initial visit, review of medical records and 30 or so pages of intake form. If they do blood tests they send them to Lab Corp. But, when you leave, have Dx and treatment plan.
 
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Well, it is now $398/hour for Dr. Lapp. I am not sure how they work it, but was told 2-3 hour initial visit, review of medical records and 30 or so pages of intake form. If they do blood tests they send them to Lab Corp. But, when you leave, have Dx and treatment plan.
None of these doctors have seriously helped any truly diagnosed CFS patient. Unless you mean: he provided a kind ear, really believed I was sick, etc etc. That's just a really expensive placebo.

I've heard Lapp speak on the Webinars and he is a true scientist-- not ! He's a country physician who took an interest in one area; and is now making a lot of money.

We are all wired in by social media. If there were any magic bullets, secret sauces, being offered by Cheney, Lapp, Klimas, Teitelbaum et al, we would all definitely know about it by now.

Seek palliative treatment if you wish, try and get disability, and basically wait out the storm till science catches up with our illness. These doctors are selling snake oil. Many of the folks on this forum are damn near indigent. The fact these bozo doctors would gouge us out of our last pennies, is repulsive.

I'll repeat what I've said before: we need a new generation of CFS specialist docs. These are either has-beens or never-weres. I will continue to cast suspicion on their motives.