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Dr. Charles Lapp

Discussion in 'ME/CFS Doctors' started by MEG, Oct 8, 2009.

  1. MEG

    MEG Senior Member

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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
    AFCFS likes this.
  2. MEG

    MEG Senior Member

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    Dr. Lapp/Ampligen

    I just realized that there is another thread on Ampligen and Doctors. Please forgive me, as I am new to Internet forums, blogs etc. You may all know about Dr. Lapp and insurance issues with treatment of CFS.

    I had to write something as I am here in tears...how dare the FDA and CDC not allow us Ampligen? How dare they ignore our disease? So, what I understand is that if I have a specific cancerous tumor or AIDS, I can get Ampligen FREE. But because we all have CFS...we get to pay $381/hr to see a doctor who may be able to cure us???????
    AFCFS likes this.
  3. August59

    August59 Daughters High School Graduation

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    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.
    Of, course my local regular doctors destroyed her medical regiment she had me on. My pain doctor cut my pain meds in half in one visit. My primary changed my Armour Thyroid back to Synthroid and so on. So, now I'm not able to work and have no insurance.
    My kids pretty much lost their dad - it's tough and it's wrong. Just don't stop praying!
  4. MEG

    MEG Senior Member

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    Thank you, August59. I am feeling so discouraged today. You are right that I need to pray. I pray all the time for others, but have such a hard time praying for myself.

    I appreciated hearing about Dr. Black. It sounds like you felt very attended to by her. I may try to find some money to see her. Especially with the news today, about the XMRV retro-virus. There seem to be more and more links to a virus. That is why I want so much to try Ampligen...but the cost is prohibitive to me. I wonder if there are other antivirals that might work for us???? A visit to her or Dr. Lapp might bring some answers.

    Your sentence about your kids loosing their dad, and that it is tough and it is wrong, really touched me. This is tough, and it is wrong! Thank you for helping me feel less alone today. And I will pray...I do have a strong faith, most days.

    Thank you again, Marian
  5. August59

    August59 Daughters High School Graduation

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    Your prayers are greatly appreciated and I promise you are being prayed for. You pray for yourself too because your life is just important as any other being on earth.

    If you can afford it, I don't think you will be disappointed with Dr. Black. She is very conscious of her time spent face to face. Depending on what she is treating she would probably do phone consults with you after a couple of visits. Towards the end I only saw her every three months unless I wanted it sooner. If I needed medications they would call it in or mail me a script. She was the only doctor that ever checked my DHEA, Vit. D, Thyroid (as in T4, Free T3, reverse T3 and antibodies), EBV, CMV, HHV-6. She tries to get your body as close to normal, if anything is way out before she treats something specific such as EBV. My biggest suggestion is to have everything you want to talk about written down. As a doctor she wants build a relationship with you, but not on your time. Ive had 1 1/2 hour appointments and 15 minute appointments. The 15 minute appointment was probably 45 minutes long, but was not charged for the whole time because we were interrupted a couple of times and got of subject a couple of times.

    I spent 11 days at the Mayo Clinic in Rochester, MN and flew out of there with a 40 page question mark and $29,000 bill. They told me nothing related to my CFS. They gave me a full body nuclear bone scan and told me I had arthritis in my knees, which I already knew. The contrast in the lymphatic system was the worse, but was normal to them. It's only checking the rate at which it travels through the body, but they don't check if it gets out of the body?????

    We all have bad days, unfortunately it's a lot of them some time. We will beat this thing and I hope this latest discovery leads to something good. I'm going to try my best to be in the optimum mental and physical shape, when something hopefully comes down the pipe. Hope you start having some good days and that they last for awhile.
  6. MEG

    MEG Senior Member

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    Dr's Lapp and Black

    August59

    Good info on the Mayo Clinic in Rochester, MN. One would think the Mayo Clinic would be up to speed on CFIDS. Apparently not so. I am beginning to discover through this forum that our provider options are limited. I had expected Duke University to have a CFS specialist(I live in Asheville, NC) My Primary doc has been unable to find one there. It is great that we PWC's have a place(these forums) to get up-to-date info. BTW: sorry to hear you spent so much money for almost nothing. Awful.

    I will be interested if Dr Lapp/Black will have more comprehensive testing/treatments soon with this new info on the XMRV (Brain fog?) virus. I know I have CMV...contracted it during one of my pregnancies. It was diagnosed at Dartmouth Medical Center. Have not been tested for HHV-6. I am not familiar with that virus. I should "Google" it. I am sure Dr. Black will attend to that, and thyroid tests.

    I awoke today feeling like sunshine...I think it is the result of much prayer and meditation. We all need to remember to attend to our spiritual sides. It is so easy for me to get bogged down by this illness, spiritually. I don't know why. Thanks for the spiritual boost...I needed it. Let's keep praying!
  7. Aftermath

    Aftermath Guest

    Hang In There

    Guys,

    Hang in there. With the XMRV discovery, the approval of Ampligen might just get spurred along.

    If and when it becomes FDA approved, it is likely that insurance companies will be required to pay for it.

    As you have found out, CFS specialists are non-existent in major teaching hospitals. Not a single one of the major medical centers in NYC has one on staff.

    Fortunately, with the publication of Dr. Mikovits article in such a prestigious journal like Science (most outside of science and medicine cannot comprehend just how big of a deal this is), the scarlet letter attached to ME/CFS (now XAND) is no more.

    If the WPI work on XMRV is replicated, expect the floodgates to open. Tons of researchers who wouldn't have touched chronic fatigue research with a ten foot pole will be lining up for this type of work. More NIH grants will be forthcoming.

    Most importantly, academic infectious disease physicians at major medical centers will be treating the illness, at normal market prices (supply will increase exponentially with roughly linear demand, dropping prices substantially and putting an end to things like $1,300 telephone consults).

    Again, hang in for another six months while the XMRV thing shakes out. The last thing you want to do is throw good money after bad down the wrong rabbit hole.

    Also, I will move this thread to our doctor review forum, as it is probably the most appropriate place for it.
  8. Zona

    Zona

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    If it will make you feel any better about all this... my girlfriend has had cfs/fm almost as long as i have (28 yrs for her) and was a patient of dr cheney and now dr lapp. She was a guinea pig for both ampligen and then aclyvair <?> and neither of them helped one iota. One made her feel worse. She is now (also) seeing a "chinese torchure dr", her description of him LOL and says he's helped her more, so far, than any other treatments she's tried. She's tried a ton of them! She says she's had more positive results (most didn't last for longer than 6 mths tho) from alternative dr.s than AMA stuff. I'm with her on that too.
  9. August59

    August59 Daughters High School Graduation

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    If you don't mind me asking, do you know who the "Chinese Torture Doctor" is?
  10. susan

    susan Senior Member

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    health system comparison

    I feel so much compassion for you US folks with your medical system. We are a little country in Australia of 21 million people yet we all get medical treatment for whatever we need to have. It is covered by 1.6% levy out of the gross wage. Everyone is free to go to any doctor they choose. We used to pay nothing to the local Doctor but in recent years we now might have to give him $20 and the Govt of this small nation pays the rest.

    If we are admitted to hospital, everything is paid by the Govt....we cant choose the Doctor It is generally good treatment altho the system has been neglected by a previous conservative Prime Minister who wanted a US type of system!!! ....Thank God we got rid of him as he was only interested in big business.

    We also have a choice if we want a Private Hospital and a Doctor of our choosing...that way we can have surgery faster. We can pay cash or we can pay an insurance fee for about $250 to cover it.... or 40 % reduced rate of that fee if you are over 65. Ony about 30% of people do this as they get adequate in the Public hospital....many of which are big teaching hospitals.

    I am very proud of this system and have lived in Canada too and it was great..not as good as here tho. Not bad for a little country. By the way most scripts are only $5.oo for disability and pensioners.

    It just breaks my heart to hear some of your stories about not being able to afford health care........no one goes without here. By the way we are just having our 32 nd boat load of refugees land on our shores and we seem to keep most after they arrive so if you want to climb in one, we will welcome you here....
  11. Wayne

    Wayne Senior Member

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    Australian Health Care

    Hi Susan,

    Thanks much for taking the time to post this description of the Australian health care system. I'm a big believer in having something similar to this in the US. But the entrenched powers that be will fight this tooth and nail. To me, your kind of system exhibits a certain moral maturity and compassion, two things I feel we need more of in this country.

    Thanks again. :)

    Wayne
  12. Alice Band

    Alice Band PWME - ME by Ramsay

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    Susan,

    Then can you explain why people from Australia are having to travel to the USA to see Cheney, Lapp and others?

    Also how many people do you know who are being treated for free by the state for anti-virals, IVIG, Ampligen etc.

    The reason I have said this is that I lived in Australia for a time and found finding a knowledgeable doctor hard and getting treatment that helped almost impossible.
  13. srmny

    srmny

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    Alice,

    I live in the USA and I think I have the best care available and yet other members who live in the states can't find a doctor near them who will even acknowledge the illness. I know this to be true because I can't find one in my area and I have to fly to NYC to see the doctor who has been treating me for years. Perhaps when you lived in Australia there were doctors there that you did not have the information or resources to access or perhaps the times have simply changed. Either way, it would do all of us good to be kind and gentle to one another even when we may have different view points. We have to fight too hard to survive outside - here we need to support one another.

    srmny
  14. Aftermath

    Aftermath Guest

    Stay on Topic

    Please stay on topic, which is Dr. Charles Lapp--this thread is not the place to interject with a political argument on the benefits of socialized medicine.

    That being said, you are absolutely welcome to discuss this topic here on the site in the Community Lounge section. Feel free to post a thread. There is also an appropriate thread in the Action Alerts and Advocacy section entitled "Do CFIDS Sufferers Want a Public Option?"
  15. susan

    susan Senior Member

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    Things are moving here with CFS

    We have some excellent Drs now here in OZ, available to everyone, most working with alopathic medicine, and alternative together...I think that is the best way to go. The Doctor route nearly killed me and I was hospitalised from drug effects with one time getting Parkinsons...scary

    My Doc, who has had CFS, a former shrink, now trained in alternative therapies, referred me to her homeopath who helped her. I refused for a long time to believe homeopathy helped anyone and I have had to eat my hat. !!!!

    Have watched 3 CFS peoples lives restored by this woman and she is an American...been here for about 30 yrs quietly working out of an old garage in the back yard charging $50 a visit.

    On her suggestion, I am buying an ionizer, hooking the outlet hose to a body suit and adding some oxygen to the hose as well to further saturate my body.

    People tell me she had Parkinsons and used to shake and there is no evidence now and she does this ionizer thing....very expensive set up but I am running out of years.

    She has just come back from the US from a complimentary medicine convention.

    Our Bond University near where I live has just been given $2,000,000 to fund research on CFS...things are happening and interesting research has come out of this country with the Dubbo studies.

    Will put up a thread later for Questions to ask the PHD researcher in charge of the Bond Uni study when she comes to our support group in 2 wks
  16. MEG

    MEG Senior Member

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    Dr Black/Lapp

    Thank you all for the great info. I did, today, make an appointmet to see Dr. Black. Earlier in the week I had a long converstaion with my primary, and she thinks we need some advice from a specialist in CFS...I admire her for that as my health is declining along with my functionality. I can't afford the Ampligen on a "cost recovery" basis, but at least I will get my foot in the door with a specialist clinic. I agree that if we wait six months or so the landscape is going to change. Insurance is going to be forced to pay for treatment.(Hopefully)

    Sure am hoping for great things from the Whittemore Peterson Institute.
  17. Michael Dessin

    Michael Dessin Senior Member

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    Cfs

    Yes, but Australia does not treat ME/CFS much differently than hear in the U.S.

    I have personally spoke with a few folks that ampligen has helped and some not.

    Why it's helped some and not others I don't know.

    Dr Lapp is a very respected doctor and I've heard many good things about him.

    Hang in everyone though, the future is immune modulators, similar to ampligen.... that will be covered by insurance, several to choose from, specific ones to match irregularities in each individual immune system.

    They will be expensive and the challenge is getting insurance companies on board.

    The future is bright, but seems like it can never come too soon.

    Hang in, now is not the time to quit.

    Mike
  18. August59

    August59 Daughters High School Graduation

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    Hey Marian - I sent you a PM a day or two ago and upon having brain fogged day I looked in my sent folder and didn't see it. Then I noticed the check box about saving copies of "Sent" messages. So you have two now and sorry for them being pretty much the same, but at least I'm not losing it as bad as I thought!!
  19. PoetInSF

    PoetInSF Senior Member

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    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 $380/hr from Lapp? And why is he not accepting insurance? Sounds suspicious to me.
  20. susan

    susan Senior Member

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    What happens to those of us whose bodies reject drugs and even vitamins...where is our future...that is why I am going out with this ionizer/oxygen thing to saturate myself so as it might weaken viruses.....HIV hate oxygen
    Here in OZ I had the top guy, a specialist in infectious diseases, who had CFS himself in touch with all the US guys and I got abolutely no where....just sympathy and comisseration.....drugs that did nothing....only DHEA worked.

    New medicine is coming whereby each prescription will be adjusted to each patients genes and that is not too far away...

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