Who is the best LLMD in California?

Discussion in 'Lyme Disease Archives' started by erica741, Apr 29, 2008.

  1. erica741

    erica741 New Member

    I want to try to go to the best. My mom does not want me to see any LLMD until I can show her proof that he/she has a good track record of properly diagnosing and curing lyme.

    Thanks for your help!

    Erica
  2. EricaCFIDS

    EricaCFIDS New Member

    It sounds like maybe your Mom is putting some pressure on you for changing directions and seeing someone new. Parents are protective and rational that way, but you need to follow your gut. I'm a Mom, so I understand where she is coming fom.

    But if you think about it, any time you ask any doctor to give you a guarantee on their treatment or predict the future for your health, they simply won't! If you say "So, how soon until you think I'll feel better?" or "How often do people improve with this?" for anything, they will stammer and avoid answering exactly. They may generalize only. They simply can't guarantee anything. They would be sued for malpractice if they made such promises. Try asking any MD these types of absolute specific questions. You won't get the answer you are looking for. I think they are trained to avoid answering and just treating to see the outcome.

    As to the best LLMD in CA.....the list I received from CALDA (the CA Lyme Disea Assoc) had Dr. H listed as an "expert" LLMD out of 5 total experts in the state. I will email you the list if you'd like. I don't think you will get the proof you want out of any of them though. Doctors just don't generally offer that unless they have a published study. They can't reveal details about another patient's care. It's against the law. You may try to find published studies on the treatment of lyme, perhaps by one of the 5 who treats LD. That may be your best bet.

    I'm sure your Mom couldn't ask one of her doctors for this kind of proof either. Doctors can give you a general opinion though. I'm sure if she went to your appt with Dr. H he would be able to discuss that with her. Are you still planning on going this Friday? I hope so. Take your parents in with you and let them be a part of the discussion. I think that would help a great deal. She could ask him directly and share her concerns. My husband did and now he understands more and feels a part of it all.

    Good luck! I know this is difficult. Let me know if I can help.

    All the best,
    Erica
  3. erica741

    erica741 New Member

    Thanks for the info!

    Ironically, I already have an appointment scheduled this weekend with Dr. H.

    However, my mom has concerns about him because he works for Igenex and his father even owns it. She thinks I won't get an objective opinion.

    I had these concerns at first, but since he is so highly regarded as an expert and came so highly recommended from EricaCFIDS and others, I but those concerns aside.

    She is also worried that I will be put on antibiotic treatments that will make me even worse. I am concerned about this too, after my experience on Valctye.

    I could satisfy my mom if I could:

    1) tell how Dr. H became considered an expert
    2) allay her concerns about his objectivity towards Igenex results
    3) somehow prove to her that Dr. H is not overzealous in diagnosing lyme and needlessly putting patients on antibiotics (this is her biggest fear)

    Can anyone help me with this information?

    Thanks!
    Erica




    [This Message was Edited on 04/30/2008]
  4. EricaCFIDS

    EricaCFIDS New Member

    Hi Erica,

    One thing I can tell you as a fact for me is that in my follow-up appt 2 days ago, Dr. H told me that my test results look like lyme but are not definitive. My CD 57 count was also 60 (normal range is 60-360). He said most healthy people are between 150-200 or higher. I fell in the lyme result area, but he still said this is not a screening tool for him (although many LLMDs have used it that way). He did not immediately say "You have lyme anyway so let's start treatment!!". No, he paused and explained what was possible and gave me three options: 1) do nothing 2) treat me and see how I feel 3) do a more definitive test for lyme. I made my own decision and chose 3.

    He in no way just jumped to the lyme diagnosis. I was actually surprised by that and pleased. If anything, he seemed to be giving my less definitive results more weight and explained why I received these negative results if I do in fact have lyme. When a person has chronic lyme it's a murkier path because your body stops making the antibodies picked up on the Western Blot testing. He was conservative in his directives not the opposite.

    Also, I am continued proof that there are lots of negative results from IGENEX testing!! (I've had 4 so far!)

    As to why Dr. H has become an expert is he is like any good product, his name has been passed in private circles for his good success rate. He practiced in my area before and is quite well known, especially by professionals. I have a copy of his CV and it's quite impressive for his age. One of the things listed is he "anchored the nation's only non-profit Lyme and other tick-borne disease clinics" in California. One of his focuses listed is international medicine and underserved populations. This is not a money driven area of medicine.

    It's interesting that it bothered you that he is a consultant for IGENEX. I took it completely the opposite. ( : I think IGENEX has proven itself to be the ONLY reliable testing lab for lyme disease. I was thrilled to have Dr. H be a consultant there and have the inside understanding on the testing capabilities offered. I don't see it as a conflict of interest at all. He told me up front at my first appt that he was a consultant there. I feel incredibly lucky to have him ordering and reviewing my results. On his CV he lists IGENEX directly and describes his affiliation as "Clinical consultant for a highly specialized Lyme reference laboratory. Created practice protocols for physicians to induce antigenuria in patients, enabling greater detection of infection". He is clearly working to help physicians out there to learn about the existence of lyme and how to test for it.

    Go to this link and you can read some great info on the founder of IGENEX:

    http://www.zoominfo.com/Search/PersonDetail.aspx?PersonID=447391025

    Clearly he is an accomplished man and knows what he is doing. I always like to look at the source when making a decision. Looking at both Dr. Hs history and experience - I'm very impressed!! I doubt there's anyone out there with more combined knowledge or experience of these two. I consider myself lucky to be a patient. Many LLMDs close their practices to new patients (ask liesandmorelies and I see it also on my list from CALDA) because they become overloaded. If I were you, I would at least establish with Dr. H before he closes his. Just a thought!

    Good luck! I hope others post what they know too. I'm also trying to reach the girl I know who has seen him for a year and half with great success. I haven't heard back from her, but when I do, I'll let you know.

    All the best,
    Erica
    [This Message was Edited on 04/30/2008]
    [This Message was Edited on 04/30/2008]
  5. EricaCFIDS

    EricaCFIDS New Member

    Hi Erica,

    I just wanted to say that I reread my post and hope it didn't come across as kind of strong? It sort of reads that way. ( : I just like facts and when writing I can sometimes be a bit intense! lol!

    Also, I wrote that you were the one having questions about Dr. H's affiliation with IGENEX, but you wrote that it was actually your Mom. You said you were putting those concerns aside.

    I also wanted to add that I don't blame you for having concerns over taking lots of ABX after going through 6 months of Valcyte. I would feel the same way without having done the Valcyte!

    All the best,
    Erica
  6. erica741

    erica741 New Member

    Do not worry about your post! :) Like you, I am a very direct person and appreciate that quality in others. If anything, your post made me more confident in my decision to see Dr. H, and will give me some great "ancedotal" data to show my mom.

    I do have slight concerns about Dr. H's objectivity regarding Igenex, but am less concerned than my mom, probably because I have read such great things about him from you and others.

    My mom also firsthand witnessed the suffering underwent on Valcyte. During my worst times on it, I was so out of it that I can barely remember those periods. But my mom watched me suffer and be bedridden for months, without eventual recovery. I know she can't bear to watch me go through that again.

    I appreciate all of the info you've shared and it would really take a lot to offend me. And if you do hear back from that woman who has had success with Dr. H, please share what she has to say with me ASAP (more data for my mom!).

    Thanks again!
    Erica


    [This Message was Edited on 04/30/2008]
  7. EricaCFIDS

    EricaCFIDS New Member

    I'm glad you're hard to offend! ( : I like good straight talk too. It saves time and energy! lol

    I can really understand how your Mom must feel after you described what she saw and dealt with in taking care of you during your Valcyte treatment. Was that like herxing or is it a side effect of the Valcyte itself? That sounds awful and you haven't felt a huge change from it? Did Dr. Montoya do blood work on you regulary while you were on it? Dr. Mora and I were discussing the differences between Valtrex and Valcyte and he made it clear that Valcyte is a MUCH stronger drug and must be monitored carefully to make sure there's no damage to the patient. It sounded pretty serious. I don't really know very much about it. Do you think it helped you at all? In a significant enough way to validate the suffering you endured?

    Just to let you know, the person I was referring to who has been a patient of his, emailed me right after I wrote you! That's so wild - an ESP thing. She was out of the country for a funeral of a family member but said she wanted to talk to me about Dr. H and would call me in the next few days or so. I'm really excited to hear her story. I promise to let you know!

    I think when you actually meet Dr. H you'll feel a lot better about everything. He's very down to earth and great to discuss your health problems with. What a doctor should be! He actually listens and knows what you are talking about. I really like him. I'm so glad you are going this week.

    Good luck with the appt and with helping your Mom through the process too. ( :

    Take care,
    Erica
  8. sorekitty

    sorekitty New Member

    Is dr. h in N. CA or S. CA? I searched around the CALDA site but could not find a doctor list. How do I find the doctor list?

    TIA!
    Molly
  9. zena01

    zena01 New Member

    Hi Erica,

    I see Dr. H in CA -- quite a ways for me from Oregon but I definately think he is worth it. I had my first visit in February, and one 6 week phone consult so far -- I'm supposed to call to make another here soon I think. I was very impressed with him and his staff. When I made my appointment they sent a big packet with questionnairs, info on how his practice runs, costs, and also his bio which really impressed me. When you make an appointment you will have that to show your mother.

    I tested Igenex positive but not CDC positive. I also tested pos for Babesia, and they feel I also have Bartonella and are treating for that. When we started, since I have stomach problems, ulcers, gerds and have been unable to "stomach" antibiotics of any kind in the past, he said "we have to rebuild your gut before we start" so that's what we did with a couple of prescriptions and supplements......then I started with artemesia pulses to kill babesia, with zithromax to keep the lyme at bay while we do that. The artemesia hit me terribly hard with herxing.....he chose to stop that and start me on different babesia killers. He also had them send me a detox kit for herxing to help my liver, kidney and lymphatic function and that really did help! All the stuff with my stomach worked as I am handling the zithromax -- the first time i've taken any antibiotics more than like 3 to 5 days before puking. Whats also great is that my sinus condition which I'd never completely gotten rid of is much better now.

    I have to say it was totally wonderful to go through my symptoms and problems and have it totally understood not like all of the "regular" doctors and specialists I have seen over the years that hadn't a clue what was wrong with me. I could never convince my regular doctor I run fevers -- so when I was there and said my "normal" is 96.8 to 97 and that 99 to 99.8 for me is a REAL fever and he said that's very common -- I started bawling - he probably thinks I'm a nut.

    In his bio it says he trained for a year with Burrascano and a couple other well known Lyme doctors. I believe (I may be wrong) that Burrascano wrote the guidelines that most ILAD's doctors kind of follow. I say kind of as everyone is different and needs different things. One thing I liked after I figured it out is that most people who say they see him when describing what they are taking it's some of the same and some different which is as it should be as we are all different and all tolorate meds differently.

    I did not mind at all that his dad has an interest in Igenex or that he consults there. It just made me more confident he understood my test results better than maybe anyone else could.

    Anyway, for what it's worth, I really liked him and think that I have a chance to get well there.

    Take care,
    Sherri


    [This Message was Edited on 05/04/2008]
  10. cherylsue

    cherylsue Member

    Please tell me more about the other babesia killers your doctor is putting you on and the detox kit. What things is your doc telling you to do for detox?

    I see an LLMD is Mo. I am also having a problem with herxing and detox. He wants to start me on Plaquenil for babesia.

    Thanks for you input.

    CherylSue