LLMD Visit

Discussion in 'Lyme Disease Archives' started by elliespad, Dec 22, 2010.

  1. elliespad

    elliespad Member

    Went to my vist with Dr. B yesterday. Thoroughly reviewed all my labs I brought. Also brought him a detailed list of Dr's I've seen over the years, any treatments offered and if they helped me or not. Took lots of notes. Did a brief exam.

    He will be ordering a few more tests before giving me a Dx. Gave me RX's for Zithromax, Doxycycline and Flagyl. Am to take the three together, then will do a 24 hr. urine on day 2, 4 and 6 or similar schedule. They will send me the kit with instructions. Wants another CD-57 test, a 24 hr. urine for Cortisol, also wants to know Urinary PH. Will be ordering a bunch of tests for co-infections. He also did a test at the end, can't remember the name of it, where they put electrodes on your arm and ankle, sort of like getting EKG. Tests certain things about your metabolism. One thing he told me was that normal people have 60% of their water IN their cells and 40% outside their cells. I had 49% in mine. Can't remember all the other stuff.

    I was seen in a satellite office so they don't have their testing supplies, blood drawing capabilities, computer access there.

    Only absolute thing I understood him to say was I absolutely have an Immune Activated Hypercoagulation. Which I knew too. I have taken Heparin injections in the past a MIRACULOUSLY, all my pain disappeared. He would have like for me to have stayed on that treatment longer. I have CFIDS and Fibro and am Thyroidless so all this could improve, or not. We'll see. He is WELL VERSED in CFIDS, Methylation Unblocking, Fibro and Lyme, so I am cautiously optimistic. Will keep you all updated.
  2. Nanie46

    Nanie46 Moderator


    I'm happy to hear that you had your LLMD visit and it sounds like it went well.

    It sounds like you have found a Dr who can finally get to the bottom of your symptoms.

    Good luck as you start your meds and will likely experience a herx.

    I look forward to hearing more as you move forward.

    I wish you a very blessed Christmas!!!
  3. elliespad

    elliespad Member

    Yes, Dr. B is a BIG name in these parts. I'm sure you have heard of him. Funny coincidence, his (satellite) office is LITERALLY one block from my childhood home. My stomping ground. How funny is that?

    I forget, were you dx. with CFIDS or Fibro, prior to your Lyme dx? On a scale of 1-10, how would you say you functioned prior to treatment and how well do you function now? I'm curious how much you improved? What are you currently taking?

    Nanie, I wish you, and everyone, a Merry Christmas too and a HEALTHY New Year.

  4. kat0465

    kat0465 New Member

    even tho he hasent officially dx'd you from all the abx he started you on it sounds like hes pretty sure.
    I'm still looking for an llmd, and so far have came up empty handed.Hopefully this time next year you will be pretty much well :) it seems like more and more of us cfs/fibro people end upon the Lyme board, coincidence? i think not!

    Good Luck, and keep us posted.
  5. elliespad

    elliespad Member

    No, I don't think he has dx. me yet. The Doxy and Zithromax are antibiotics, and the Flagyl is an Antiprotozoan and Antibiotic (a Cyst-Buster). He says the three together will be like a STRESS TEST for Lyme. Hopefully, if they are present, they will die and could be detected in the urine, or antibodies to them, (I forget which), could be detected in urine. That's why I have to do the 24 hr. Urine Collections on certain days. It's diagnostic at this point, not therapeutic. I just hope I tolerate the 3 of them okay.

    Kat, I appreciate your good wishes that I will be pretty much well this time next year. Let me tell you, that would be a MIRACLE. I have been REALLY sick for almost 30 years. He says he has some ideas for me, but admitted I will be a tough case. Here's hoping.

    Kat, where do you live? Oh, I just looked, you are in Texas. Sorry, don't know any names in that area. I am in New York.

    [This Message was Edited on 12/23/2010]
  6. kat0465

    kat0465 New Member

    wow, i didnt know they could do that, detect the the bugs in urine. hmmm, maybe if i bring that up to my cfids dr, she might do a test like that.

    although she deals with mostly aids and cfids, i hear she will treat for Lyme if your test comes back Positive.
    i did an igenex and believe it or not it said Neg, but a few people who actually have Lyme told me my test looked identical to theirs,so it pays to see a good LLMD

    i wish more docs would look at the symptoms before they just poo pooed the test. Yes, Tx is up a creek without a paddle when it comes to Lyme ;( there was a couple dr's in Louisiana, however they arent taking new patients.

    i too Have been sick for an eternity, severly 20+ now. but really from the time i was little, i can also remember my mother taking a tick off of me. after that it seemed i was never well.

    your in great hands! if i win the lottery you might see me in Dr B's office,lol.


  7. Nanie46

    Nanie46 Moderator


    Wow, that is a "Godincidence" that the Dr who will likely help you is one block from your childhood home!

    There must be a LOT of lyme there like there is here.

    I was Dx with FM before Lyme. I had lyme for 21 years before I figured it out.

    For many years I functioned at about a 9 and then as I got older and my hormones changed, I got worse, especially sleep, fatigue and pain...functioning at about a 7.

    In Feb 2008 I got much worse after trying Ambien CR for sleep. It must have really stirred up the lyme in my neurological system. I developed excrutiating pain and stiffness in my head, neck and shoulders. I thought I might die. At that point I was functioning at maybe a 4. I researched and got an Igenex western blot, which was negative, but had lyme sprcific bands anyways.

    I found a LLMD and started Rx in Feb 2009. I have been Rx for 22 months. Right now I am on doxy, plaquenil , bioidentical hormones, TOA free Cat's Claw and LOTS of supplements.

    I am functioning at about a 9 again. I am still working on pain. My head/neck/shoulder pain is about 65% better. Sleep is probably 90% better, fatigue is about 90% better, FM pain is about 50% better.

    My LLMD tells me I will continue to get better. I trust him totally. Many people who have been sick for years have to treat for at least several years.

    I expected way too much too soon and that was a mistake.

    Please remember (very important!) that you may never get any positive test because the borrelia bacteria hide within the cells. They know how to evade detection.

    Many people have been diagnosed clinically based on history, symptoms, and exam.

    Also remember that you may feel like you do not tolerate the meds very well because your symptoms may worsen when you take them. This is likely a herx and indicates bacterial die off...which indicates a bacterial infection like lyme.

    I have herxed in different ways at different times with different meds....flu-like fatigue, joint pain, increased muscle pain, muscle twitching.

    Take it one day at a time and live with HOPE now.

    Thank you for your good wishes. I also wish you a healthy New Year!

  8. elliespad

    elliespad Member

    To go from functioning at a 4 to a 9? That is significant. I function around a 2, overall . If I could get to 50% I'd be happy. Anything higher, I think I could dance. If I EVER got to return to work, I would be shouting from the rooftops. And if it happens from Lyme treatment, I'd have to embark on a crusade to those on the CFS board to get checked by a LLMD. We'll see.
  9. Nanie46

    Nanie46 Moderator

    I have faith that you can get better. It can take a long time, but time is going to pass anyways.

    Then yes, you can join me in alerting people on the FM/CFS board who have suspicious symptoms! (which is almost everyone!)

    Trouble is, people trust a very unreliable lab test and a non-lyme literate MD to tell them that their illness is not lyme.

    It's hard to get people to listen....but some do, and they usually end up with a lyme diagnosis....coincidence??? I think not.
  10. zena01

    zena01 New Member

    I think it is wonderful you are able to start treatment and getting tests. It sounds like they are being very thorough.

    I was wondering when you visit him again and/or get your test results if you are going to find out why he was interested in your Cortisol level in your urine, and also your urinary PH.

    I have been having terrible bladder problems in the last 6 months -- have had problems off and on for years, but now driving me nuts. I was in treatment for 1 and 1/2 years with LLMD and could no longer afford to travel and pay for the visits etc. My regular doctor here has told me that after we see about irritants such as tomato/citrus/vitamin c that he will send me to an urologist. If there is something about Cortisol or PH that would make a difference in that I would love to know.

    I know visits are busy and you have your own issues but if he does happen to mention why he wanted those tests if you could post it I would really appreciate it.

    OR, maybe someone on the board already knows the answer???


  11. elliespad

    elliespad Member

    This doc is an Integrative Doc, treats allergy, autism, chelation therapy, immune system disorders, lyme disease, mesotherapy, all kinds of chronic health problems. You can read about his practice at the Rhinebeck Health Center.

    I don't know how knowing my Urinary ph will help him treat my recurring UTIs. I have had probably hundreds of infections, had cystoscopy 3 times, even before kindergarten. Would be great if this tells him something.

    I take Hydrocortisone 5 mg. 4 times a day, for adrenal insufficiency. Normally he would use Salivary testing for Cortisol, but I am already being treated. He said he wants to see if I am taking enough. Again, don't know how diagnostically helpful this will be, but I did the test.

    Have done tons of blood work at regular labs that he ordered. Three of the tests are being sent to specialty labs and require out of pocket payment so I have paid for one, and the other two will have to wait.

    I was supposed to make a followup appointment for 3 weeks after I did the tests, so I will have to wait for my next appointment. Won't be able to complete all these tests until next month.

    Thanks for you good wishes, and will keep you undated after I see him again.