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Doctor in Louisiana

Discussion in 'ME/CFS Doctors' started by Billt, Feb 5, 2015.

  1. Billt

    Billt Senior Member

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    Hi guys, 1st post but have been looking and learning for a little bit now. I am in need of a good doctor close to my home if that is possible. I am in New Orleans, La. Maybe one that could even work with a local Dr ( if they do that ). My son has had EPV for 11 months now or so we thought. Got his latest test back today EPV-PCR
    and it was negative. Dr here will not even guess as to why he is still sick. I feel it has gone into CFS but we need
    help to find that out. Can't afford a big road trip, so just wondering if anyone knows anybody fairly close to me..
    Thanks in advance.. Billt
     
  2. Daffodil

    Daffodil Senior Member

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    hi billt. i assume you mean "EBV"

    I dont know of anyone in La, but there are doctors elsewhere who will work with you long distance and with your local doctor (sort of). Unfortunately, you would have to take your son to see him at least once a year in order for the doctor to legally treat him.

    would a neighboring state be okay?
     
  3. Billt

    Billt Senior Member

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    Yes, I did mean EBV. Sorry... and yes, a state close would be fine Texas or Miss. Just can't get to the west coast or the northeast or Miami ( just too far for him to go ). We don't seem to have many of any type drs here. Seems all the good ones move away from our coast line !!
     
  4. Daffodil

    Daffodil Senior Member

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    Hi Billt. On the bright side, what a wonderful place New Orleans must be to live!

    Here is a doctor in Tx:

    Dr. Patricia Salvato, M.D.
    Diversified Medical Practices PA
    6300 Richmond, Ave Ste 202
    Houston, TX 77057
    Telephone: (713) 961-7100
    More information: http://www.vitals.com/doctors/Dr_Patricia_Salvato.html#ixzz1buP9t9ez

    I usually recommend Dr. DeMeirleir In Reno (or Belgium, if you prefer). I believe him to be the best...if there is any way for you to go there, you should consider.

    Again, you would have to go there only once a year if you have a local doctor who is willing to implement his protocol.

    xo
     
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  5. Billt

    Billt Senior Member

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    New Orleans
    Thank You my new friend. Houston is only apx 6 hrs away so we could make that. I will look into the other Dr. but I don't see a way to get there at this point. Thank you so much for your help.... Bill
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @Billt I just wanted to add that it is rare to get a positive test for EBV on PCR. When I first saw my CFS specialist, I had six different tests for EBV and was positive on five of them and the one negative was PCR.

    He was not surprised and said EBV is not often in the blood and hides out in the tissues (this is not a quote and I am paraphrasing from memory.). The positives of current infection were on IgM and Early Antigen and these tests were 2.5 years after I had mono and now still positive three years after mono!

    I don't know anyone in Louisiana and the closest specialist is probably INIM in Florida but I know you said that is too far away. Best wishes to you and your son.
     
  7. Billt

    Billt Senior Member

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    New Orleans
    Ginger, thanks for the reply. I have been reading alot of your posts about the Dr where you go. Sounds super nice and is helping some people. Wish I could make it out there. Not sure what INIM is ?? All the bloodwork numbers are so confusing to me. 1 Dr want to do IG infusions. The other Dr that did the PCR test says there is no current infection.

    Humm, so I am confused. All his other numbers are off the chart for a year now . So with these other EBV numbers high, do you think there is still a current infection?? I am trying to learn best I can.. Thanks you again for your follow up....... Bill
     
  8. *GG*

    *GG* Senior Member

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    Concord, NH
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Billt was your son tested for IgM or Early Antigen test for EBV or only by PCR? I know different doctors interpret these tests in different ways. You asked about INIM and it is where Dr. Nancy Klimas practices. I mentioned it b/c it is probably the closest CFS expert to your area. I am tagging @SOC who could tell you more about it as I have never been there. I wish I could do more to help.
     
    Last edited: Feb 6, 2015
  10. Billt

    Billt Senior Member

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    New Orleans
    Yes he was tested several times by an ID first .. ebv ab vca igm 160. positive is over 43 so HIGH. early antigen igg less than 9 so I think that is negative, ebv vca igg 100 over 21 is positive so HIGH . nuclear antigen ab igg 75, over 21 is positive so HIGH. All these have been high since his first bloodwork 4/14. was sent to immune dr and said he needed IGG infusion. Went for a 2nd opnion and they did the EBV-PCR and was negaitive. Was told they can't help and don't know where to send me. They also said neg pcr means no active infection and that his numbers would maybe come down in the future. So I am confused now as to weather he has infection or not ???
    I can tell you he is so tired he can't go out the house and brain fog a big problem. So CFS ??
     
    Valentijn likes this.
  11. Billt

    Billt Senior Member

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    New Orleans
    Ginger, I did look up INIM and called. Just got a recording saying they are not taking any new patients right now. Hard to believe with so many people that have this, that there are not more doctors. No one even close to me that soundslike they could help. Thanks again
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    Hi Bill, I am so sorry and did not know they were not taking new patients. I believe they have three doctors there but do not know details. Maybe SOC or someone else who has been there can type more. My doctor is at OMI (in California) so I know that is not much help. I wish there were more specialists but they are few and far between but others may know of someone that I do not.
     
  13. Billt

    Billt Senior Member

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    New Orleans
    No problem at all. I thank you for all the info you have given me. Maybe we can save up and get him to OMI. Plane fare is about the same as Florida just alot further.. We'll keep searching... Bill
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    @Billt
    There is also Dr. Kenny De Meirleir to consider, though again it means travel. I see him in Reno, Nevada though he is based in Brussels. He sees patients in Reno every few months. He will be seeing patients there in March on Friday the 27th and Saturday the 28th. Appointment information is available by emailing: Charlotte Francois<charlottef@ehmb.be>

    Best wishes,
    Sushi
     
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  15. Daffodil

    Daffodil Senior Member

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    Salvato in Houston is not bad i heard.

    its likely your son has active EBV but that is just a part of the CFS picture.
     
  16. Billt

    Billt Senior Member

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    New Orleans
    Thank you Sushi
     
  17. Billt

    Billt Senior Member

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    New Orleans
    that is where i get so confused. Dr. here said negative EBV-PCR means no active EBV .. But all his other test are so high for EBV. So EBV has got to be in there somewhere..

    you all have been so kind to help... thank you soo much ....Bill
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I have to disagree with that doctor b/c I am negative on PCR for EBV (but positive on IgM, IgG, Early Antigen, etc) and all of my current doctors say this means that I have active EBV. I do believe that EBV and many, many other pathogens can trigger ME/CFS and then the virus can be inactive but the damage is done (by whatever mechanism that we have yet to understand.) But in my case, the EBV virus and the VZV are still testing active on IgM. It sounds like your son has active EBV from what you have shared.

    I do not know anything about the doctor in Houston so I cannot comment but maybe if you explain that you would be traveling to see her, she would do a brief phone call to see if she is familiar with treating EBV or ME/CFS or using anti-virals, etc. Otherwise I would see one of the specialists.
     
  19. Daffodil

    Daffodil Senior Member

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    dr. salvato is kind of a well known CFS doctor, isn't she?

    I think almost every CFS doc would treat EBV
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @Daffodil For some reason, I have never heard of her but that doesn't mean anything and I am sure there are some CFS specialists that I have not heard of! That is why I said that I could not comment and she may be excellent. If she is a specialist, then I agree, she should definitely know how to test and treat EBV. How did you learn of her? I am just curious for my own future knowledge.
     

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