Dr. Montoya debunked Lyme and Igenex

Discussion in 'Lyme Disease Archives' started by erica741, Apr 23, 2008.

  1. erica741

    erica741 New Member

    Today I saw Dr. Montoya, the infectious disease specialist at Stanford who recently finished a drug trial for the anti-viral drug Valcyte. In January, I completed the standard Valcyte treatment under Montoya (outside the trial) but did not recover.

    When I saw him today, I showed him my positive Igenex results and told him that since I am still running fevers and am totally disabled, I will probably see an LLMD.

    He debunked the possibility of Lyme disease because I already had a negative lyme Western Blot at Stanford. He also flat out said that Igenex is a joke in the medical community because everyone gets positive results from them.

    Any comments?

    Erica

    [This Message was Edited on 04/23/2008]
  2. mollystwin

    mollystwin New Member

    What he said is not true. I have two family members who had negative Igenex western blots from Ignenex. What he said was a joke.

    There are so many of us who are recovering with lyme treatment after igenex testing.

    I think he is the joke. He is most likely defensive because his treatment didn't help you.

    I suggest seeing an LLMD.
  3. highcotton

    highcotton New Member

    I had a negative Igenex test (activity in 3 bands) but i tested positive for Bart. Hard to imagine having one without the other.

    If he really believes what he said, then he is obviously pursuing research for his own self-aggrandizement and not for humanitarian reasons.

    how disappointing.
  4. erica741

    erica741 New Member

    I think Montoya had good intentions with his lyme and Igenex comments, and I'm giving him the benefit of doubt that he is going by negative things he has heard or read about Igenex (and we all know that the lab has gotten some negative publicity in the past). I really doubt Montoya even has the time to research Igenex.

    I just wanted to post what he told me, but I still intend to see an LLMD soon. Thanks to all of your helpful responses to my posts, I've identified a highly regarded LLMD who practices in both the Bay Area and Malibu (close to where I'm now living with my parents). I'm going to try to get an appointment with him soon.

    Thanks again for your support and I'll be sure to post any updates!

    Erica

  5. erica741

    erica741 New Member

    I live in central San Francisco, so when we are all better and have our girls day out, let's go out here in the city! :)

    btw, I am at my apartment in SF right now for Montoya and other appts, and then back to my parents in the LA suburbs. I love it here and miss it so much, but the city is incredibly hard on someone as sick as me...having to walk everywhere and living on the 4th floor in an old building with no elevator is just too hard.

    But thanks to my newfound hope that I have lyme and can be cured somewhat soon, I'm not giving up my rent-controlled studio with a view of the Golden Gate bridge just yet...

    Looking forward to meeting you all when we are all better (g-d willing)!

    Erica

  6. Nimzovich76

    Nimzovich76 New Member

    Hi Erica, If you are referring to Dr. Jeff Harris in Malibu, I believe he is an honest guy. From what I understand he is the father of Nick Harris the owner of Igenex. He himself doesn't believe in Igenex and sent my blood to MDL labs.

    I will like to know about your experience if you go there. He was honest about not pushing a lyme diagnosis. I went to another LLMD and he was the worst, he actually knew very little about the biology of bacteria (I work in biotech research) and was ready to say that I had lyme even before looking at my tests, but he was willing to try IV (and he took my insurance).

    In my case I was just trying to discard any bacterial infection (lyme or not, i.e mycoplasma) before moving into treating an autoimmune (M.E) condition (which was confirmed after I got a spinal tap). I used to be very athletic like yourself, and have been sick for as long as you (and actually sicker at times, bed bound), however at some point I recovered to almost 90%, I relapsed not too long ago, but it seems that I'm again recovering (knock on wood).

    Just be aware that if you look for a lyme diagnosis you will eventually find it, just like you tried valcyte, it won't be a bad idea to try antibiotics, however be aware that antibiotics themselves used long term have been linked with further disturbance of the immune system, it can weaken it (which has been linked with higher incidence of cancer), trigger autoimmune conditions, create antibiotic resistant bacterial infections, etc. On the other hand some antibiotics are known to be immunomodulators and anti-inflammatory (specially mynocycline, which has a very low risk profile).

    what has helped considerably in the past, has been the myers cocktail, but I have tried different approaches based on my own research (I had access to scientific journals through my work).

    Just consider the advice your doctor gave you, before you jump into anything that could actually trigger deterioration of your condition.

    Remember that LLMDs do not have training in infectious diseases, and an infectious disease doctor will never call himself and LLMD, but if you can find one in which that's the case, you should go and see him.

    You may want to look into low dose naltrexone.

    forgot to mention that you may be a good candidate for the Ampligen trials, I have looked into that myself with no luck (is hard to get in and is expensive as well).

    [This Message was Edited on 04/25/2008]
  7. Nimzovich76

    Nimzovich76 New Member

    I'm just telling Erica what my experience was, maybe he changed his mind, I don't know. I personally think that probably Igenex has improved since they were investigated for misusing the test kits they were buying (elisa and western blots) and the fiasco with the LUAT (urine test) that they had to withdraw. I don't really want to argue about that because I think is immaterial, but I would like to know what Erica's experience is with this Dr., hopefully she'll update us.
  8. erica741

    erica741 New Member

    No, the LLMD I was referring to is not Jeff Harris, but is a different doctor with the same last name (I am being vague because there seems to be some code of secrecy regarding discussing LLMDs). Also, I'm pretty sure J. Harris is not related to the Nick Harris of Igenex because on the LLMD list I have, it specifically says next to J. Harris' name: "no relationship to (the LLMD I mentioned) and Nick.

    Does anyone know if the LLMD I am considering seeing is related to the owner of Igenex? If so, I do have some concerns about his objectivity towards Igenex test results. However, he has been highly recommended to me by several people and is considered one of the lyme "experts" in CA.

    You bring up some good points, and I do realize that many LLMDs may be overly aggressive in diagnosing lyme, especially with a positive Igenex result. My experience with Valcyte has made me even more cautious with new treatments. I am not going to go into anything blindly.

    Thanks for your input! I appreciate the information and your courage to express your concerns about a lyme diagnosis on this lyme board.

    Erica
  9. EricaCFIDS

    EricaCFIDS New Member

    Hi,

    I just wanted to correct the record, since your information in your first paragraph is entirely incorrect. I see the Dr. H you are referring to who is the SON of the other Dr. H who runs IGENEX (not the other way around). Dr. Jeff Harris is of no relation to either one. The Dr. H I see has a main office in Northern California, but also sees patients in Malibu once a month. He is also a consultant for IGENEX, is an LLMD and considered the lyme "expert" in the state of California, according to the President of CALDA (California lyme disease assoc). He MOST DEFINITELY DOES believe in and use the IGENEX testing. I know, because he did so on me and I am his patient and he explained his consulting position to me prior to my first appt.

    In my opinion, your credibility goes down when you don't have the facts or state them incorrectly. It's best to write only what you know to be fact that you have verified, and not what you don't know for sure, especially when criticizing their treatment or practice.

    I would HIGHLY recommend Dr. H in Redwood City/Malibu. I hope Erica741 will still consider him! She knows I am a patient there....

    ~Erica (CFIDS), the other Erica
    [This Message was Edited on 04/26/2008]
  10. erica741

    erica741 New Member

    Thanks for your post. You brought up a lot of really good points.

    I suppose it does sound strange for a doctor to tell a patient who has not recovered under his treatment to end the treatment and then go home and rest. But Dr. Montoya did say in the beginning of treatment not to expect to be fully recovered by the end of 6 months, and I would need an additional several months to reach full recovery. However, he did promise me I'd be at least at 80% by the end of the 6 months.

    But to further defend Montoya, when he took me off Valcyte, he cited a patient (who from his descripton was clearly "gasolo" on the CFS board), who felt no improvement on Valcyte, but reached near full recovery with rest just a few months after ending his treatment.

    I don't mean to dismiss your comments, because they were very insightful and supportive. I just wanted to point out that although Montoya may be overly optimistic at the beginning of treatment and often blames the patient for lack of recovery (that is indefensible though), he is dealing with what is now still an experimental treatment. Since I can only see him about every 3 months, each time I see him, he has clearly learned more about Valcyte and sees more about what works and doesn't work for patient recovery.

    I do agree with you that he is overly biased towards Valcyte. But I realize that Valctye is his "big thing", and I take that into consideration with all of his comments and recommendations.

    As for his debunking of Igenex, I still have to blame that on negative press, rumors he has heard, and maybe even what he has been taught formal continuing education. There are enough doctors out there that don't like Igenex that I can't blame Montoya for his opinions on the lab.

    Montoya did run another Lyme Western Blot through Stanford, and also ran a lot of other tests that he says he has learned are often bacterial infections CFS patients suffer from. So, his is slowly learning that Valctye is not are cure-all solely based on viral titers. I think he will continue to consider lyme and other bacterial co-infections as he continues to learn more and more about CFS. And, as you pointed out, as his Valctye patients do not recover because they are suffering from these other issues.

    Sorry for the novel. I just actually had a rare bit of energy from the Provigil I took a few hours ago. But I did want to make sure to point out that, although Montoya and his treatment is far from perfect, he does continue to learn more and more not just about Valcyte, but also about other CFS-related infections.

    I am definitely planning to see an LLMD, regardless of what my Stanford lab results. I believe at this point in my illness, a postive Igenex test is enough to warrant seeing an LLMD.

    Thanks again for your support and recommendations.

    Erica

    [This Message was Edited on 04/26/2008]
  11. victoria

    victoria New Member

    my son's llmd is both an internist & an infectious disease specialist, double specialty... so please don't make generalities about LLMDs... there are good and bad ones just as with 'standard' doctors. And I don't see what's wrong with an LLMD 'just' being an internist... or for that matter a GP if s/he does the research and works hard. Many advances have been made by those who don't have the most top notch certifications - doesn't mean they cannot think.

    And unfortunately for those with lyme, there are multiple strains as well as common co-infections that are even harder to test for. Anyone who spends some time reading research can find this info... but you know that.

    PJ - I agree - let all the IDSA 'experts' show us all how easy it is to 'cure' all of this by having ticks known to carry Bb etc bite & attach themselves for as long as they want to feed on them...

    Bet there won't be any takers. If it were so easy, they'd be like that doctor Barry Marshall that demonstrated how h. pylori was responsible for ulcers by deliberately infecting himself, then using abx to get rid of it... btw, he got a Nobel prize with his partner eventually for the discovery.

    good luck Erica, glad you're sticking with pursuing options...
    all the best,
    Victoria




    [This Message was Edited on 04/26/2008]
  12. Nimzovich76

    Nimzovich76 New Member

    I didn't state as a fact that Dr. Jeff Harris was Dr. Nick's father, if you read my previous comment I said : "From what I understand he is the father of Nick Harris the owner of Igenex", so I'm sorry for the confusion and thanks for the clarification.

    I thought it was Dr.J Harris because from what I remembered he works at two different locations including his office in Malibu.

    Victoria, in terms of your son's Dr. being both an infectious disease specialist and LLMD is great, is the first time that I hear that. I would be more comfortable with someone that had to go on 4 years of formal training in I.D., not to take any merit from those who have taught themselves.

    I think Lyme is an important differential, I even don't have any issue with trying antibiotics (even if its not lyme). I don't want to get into "fighting" what's right or wrong, or get personal about this. Just giving my 2 cents on my experience and my knowledge.

    best of luck Erica I hope you get well, I think you have the right attitude in terms of looking into other options but with a certain degree of skepticism.
  13. EricaCFIDS

    EricaCFIDS New Member

    It was not the statement you quoted so much as it was more that you stated falsely that a well known LLMD who is the son of the man who runs IGENEX, doesn't believe in using IGENEX testing. That is completely false. That would make a rather strong statement coming from his son who is an expert LLMD. That is why I corrected you. It would certainly send the wrong impression to others trying to get a fair understanding of the IGENEX lab, when in fact, you were speaking of someone totally different and not related. The truth is quite the opposite.

    I'm sorry if I can across too strong about it, but I am all about the details and being accurate! Otherwise, it's easy to give the wrong impression or confuse the truth.

    Thanks,
    Erica
  14. Nimzovich76

    Nimzovich76 New Member

    no problem, in all honesty I try to stay away of the lyme discussion, I have been personally attacked in the past (not that you did). I just check the lyme board every now and then. I thought Erica was planning on seeing the same Dr. I saw and after reading her story, I decided to write my experience.

    be well,
  15. EricaCFIDS

    EricaCFIDS New Member

    Hi again,

    Can I ask you if you thought Dr. J Harris helped you? You didn't really say. I only ask because he was on a list of good doctors (even lyme) and I know a few people in that area that are desperate for help in lots of areas, not necessarily just lyme. I think he could be a helpful option for them. Was your experience with him recently? Thanks.

    I'm sorry if people respond with such strength here sometimes. I'm amazed at my own response! I think it's just our passion to share what we've learned, and many have come this far after so much resistance in the medical field and from others who are close minded about lyme. It's too bad that lyme is treated that way and then makes us feel like defending it. It's a very real disease for many and has been a long long road to finding that answer.

    Please know that I am happy you are here adding to the discussion. It's good to question things so that we can all learn more! ( :

    All the best,
    Erica
  16. Nimzovich76

    Nimzovich76 New Member

    I perfectly understand, the situation that we are all in is very frustrating to say the least. Believe me, I'm very disappointed in the health care system and Drs in general (I have to say though that I am extremely lucky to have my PCP, he is the best physician I've met so far). I lived in CT and went to graduate school for biomedical Eng. before coming to CA , I have worked in Orthopedic research and currently on biotech research (short term disability right now), I have more than my share of working with Drs (my ex girlfriend by the way, is in med school and I met her while she was doing research in neurology).

    I digress, just wanted to let you know that I share the disappointment with the health care system and that I've met several people that got infected with lyme while living in CT.

    to answer your questions:

    I saw Dr. Jeff Harris about a year and a half ago, he ran the tests through MDL, I was negative for Lyme in different tests (IFA, WB, Elisa, PCR), I was positive for babesia, however this was an experimental test developed by MDL so I was skeptical (I did run later my own giemsa stained blood samples, I still have the images but they are not conclusive). He ordered MRIs and Pet Scans (normal, except for some hypoperfusion to the temporal lobes).

    I went on oral antibiotics and babesia treatment for about 3 months, just made me sicker (and no is not herxheimer reaction). He then referred me to another guy in thousand oaks for I.V. treatment since he was skeptical of me having lyme (so was I at that point).

    Well this other guy I felt was terrible as a Dr. but very willing to treat (and took my insurance), which is what I wanted, after a month of Rocephin, I just called the I.V. company (which had already applied to my ins for 3 months of abx) and told them to cancel any more deliveries of the drug. Well the infusion company still charged my insurance and sent me more of the medication, they wouldn't take it back.

    In conclusion, I think that Dr. Jeff Harris is pretty balanced in terms of diagnosing Lyme, and he did help a friend of mine who was indeed misdiagnosed after having a bulls eye rash. Even though she went untreated for very long, she actually recovered very fast with a fraction of the antibiotics I took.

    The guy in thousand oaks, is a good option if you want to experiment yourself with I.V. just like I did (like I mentioned before I was not just aiming for lyme, but for other infections or as a way to modulate my immune system). He kept pushing Ketek on me like his life depended on it, I knew better, I was aware of the liver toxicity before the FDA label revision.

    take care,


  17. amk33

    amk33 New Member

    Perhaps the reason that so many get positive tests from Igenex is because only the people that have lyme symptoms (and probably lyme)get their blood tested there.

    Maybe someone should send a perfectly healthy person's blood and see what result you get. I bet it will be negative.
  18. amk33

    amk33 New Member

    Liesandmorelies-
    I'm sorry...I can't find the post that you are referring to. Maybe you can copy and paste it to a post in this thread?

    Just another note on this topic-I have never tested positive on a western blot, PCR, or Elisa at any lab except Igenex (WB). I have been tested by quite a few other labs (including MDL and Quest).

    I had the Flow Cytometry test (Central Florida research lab) that tests for the actual bacteria. This was positive-and I've had 8 years of antibiotics (on and off).

    This tells me that Igenex, not the other labs, was correct. Also, I recently had a spinal tap which was negative (Which many are). But, they include a picture of the test strip.

    I did have bands that were lyme specific, but just not dark enough to call positive. Again, this tells me that Igenex was correct. Their interpretation of the bands seems more accurate to me. They record light bands as

    "equivicol" because they are significant. They wouldn't be present if you were not exposed to the lyme spirochete.
  19. Daisys

    Daisys Member

    Sorry, I haven't time right now to read this entire thread, but wanted to respond to your initial post.

    I went to a new doctor who looked at my history and suspected lyme disease. He did test me thru Igenex and it came back negative. He told me that someone who had symptoms as long as I have probably has a disabled immune system. That means the immune system is not going after the lyme infection, and so it wouldn't show up on the test.

    He put me on doxycyline for 3 weeks, to hopefully kill some of the bugs, and then the immune system might notice them. Again, the Igenex test came back negative, but meanwhile, I was reacting to the doxycyline as though I did have lyme disease.

    So, then I was given the CD57 test, and it came back with 50, indicating lyme disease, and I've been treated ever since.

    I'm so glad I found a doctor who made a clinical diagnosis (as is recommended by the CDC), because my health was disintegrating quickly, and I feel he caught it in the nick of time.

    Igenex doesn't automatically come back with positive results. They just are better than other labs at catching some cases.