Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Oct 29, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all! i just got back from MI and wanted to tell you about my visit.

    i noticed when i was waiting to see dr. lerner, that his energy scale including sitting as activity and i did not realize this before so the whole while i have been telling him i am a 2 i was probably a 3.

    i do not fit into the scale very well, as my main symptom is cognitive problems and his scale seems more focused on energy.

    anyway, i told him that i felt much better than i did the last time, when i had deteriorated considerably due to some stressful events. i told him that i am past 3 on his scale - maybe 3.5.

    he was very happy and said i had made his day.

    i asked how his trip to greece was and he said it was great but involved 36 hrs of traveling so it was grueling. he went to the place where doctors first took the hypocratic oath (or something like that).

    i asked him about the huge labcorp bill i got....he said he had to make sure we hadn't missed another infection since i was not doing well at that time. he said this was part of the protocol.

    i asked i could see him every 6 weeks now but he said no because of safety issues (likely with my liver).

    i told him i have now gained so much weight and asked if i could at least do some yoga or pilates. he said no....not until i am 7 on his scale.

    i again showed him my right ear canal, in which the crusting and itching was worsening. i also think i may have seen some pus. i think he said it was some bacterial infection and prescribed some ear drops.

    i told him that i still feel that the brain fog has not improved significantly but he said it would take time and that we were on the right track.

    i again expressed my gratitude for my improvement. i think dr. lerner is one of the most wonderful and caring human beings i have some across and am very privileged to be seeing him.

    thank you for reading...


  2. misskoji

    misskoji Member

    I've been off for a few days and went to search for your posts to see how you were coming along.

    I'm so glad to hear you are improving! Dr. Lerner sounds so awesome and I'm very glad you are under his care.

    Here's to hoping you continue to get relief and soon. Thanks for posting this.

  3. ladybugmandy

    ladybugmandy Member

    thank you! yes i am better for sure.

    gr...i asked a few times if i could just do the blood tests locally but he said no..he has to check for other things. i am sure he he has been asked this many times.

    since our immune systems are compromised, i guess many things can happen which he has to keep on top of and treat aggressively. for example, i once had a bacterial skin infection that i thought was nothing....and now i have a bacterial ear infection.

    i forgot to add that dr. lerner said it is important for me to get the flu vaccine and the pneumonia vaccine.

  4. redhummingbird

    redhummingbird New Member

    I'm so glad to hear you're improving. It sounds like Dr. Lerner really concentrates on patient's safety. That must be reassuring though inconvenient in terms of having to travel.

    I wish I lived close enough to see him. I just can't afford the travel or appointments.

    I watched his 2008 video presentation-it was really interesting. It sounds like he has found a way to test for viruses and then know when to treat with antivirals.

    Does he use his own lab to test for HHV 6, EBV, and CMV?

    I just got tested through labcorp. The local Focus labs shut down. LabCorp ran the EBV but ran the wrong test for HHV 6.

    I'm also still waiting for my RNase panel from Redlabs. For the amount of money they charge, I'm not impressed with the service. I keep having to call them to find out when my results will be in. They promised me last Weds, then Friday, then yesterday, and then this morning. I still haven't received them. I have my doctor appt next week and have 48 hours to cancel or else I have to pay for the appt! The appt is for nothing more then to discuss these results and plan the next course of treatment. I'm so frustrated with them (Redlabs). It's been almost 1 month!!!
  5. ladybugmandy

    ladybugmandy Member

    red.....do not let redlabs get away with that service! call them and ask to speak to craig. tell him you need the results ASAP...he will make sure they get done before your doc's appt. i had the same problem with redlabs once.

    about seeing dr. lerner....there was one fellow on this board..i think 28years maybe...who saw dr. lerner, had the tests done, and got a protocol for his local doctor to follow. i think dr. lerner will do that in some cases if you live far. please enquire about this!

    best of luck
  6. SpecialK82

    SpecialK82 New Member

    Hey Sue, glad to hear that you are feeling better these days. It sounds like a good visit with Dr. Lerner. That's good you got the guts up to ask about the labcorp bill, his answer makes a lot of sense, just too bad the tests are so expensive.

    Do you feel like you are gaining weight because you are not excercising or do you think it's the medicine? I feel like I was gaining weight with Valtrex, I did eat more since I had to eat with my pill before bedtime but I wonder if the medicine itself was causing me to gain??

    Glad you finally got something for your ear.

  7. ladybugmandy

    ladybugmandy Member

    hi kristina:)

    i dont know why i am gaining weight exactly. i think it's mainly because i have remained inactive for like 2 1/2 years now. also, i tend to eat a lot of carbs. i crave them and don't seem to have much energy w/out them. it's been this way throughout my CFS but especially when i am sicker.

    the meds may be playing a part, too.

  8. viralfree

    viralfree New Member

    Hello Sue,

    Thank you for all your posts and sharing your experience w/Dr. L. I'm very glad to hear of your improvement.

    I started his protocol after 9mo on Valcyte (which was tremendous for my cognition, but only some physical improvement). I still have an active EBV infection combined w/CpN (a bacterial infection).

    So now I'm on Dr. L's protocol, finally reached 4gr a day. I'm very fatigued yet anxious for recovery/activity, thus reading Dr. L's response re: no activity is VERY helpful. As are other patients' experiences.

    As for weight gain I too gained weight and craved carbs every time i had, what i'll now call, a relapse. My initial illness (likely mono) i gained 1/4 my body weight in 4 months. This time, nearly 30 years later, I gained 1/3 of my body weight, mostly in 6 months. It was horrid, as organs seemed to be failing and my body craved fuel. I was putting on 1lb a week, until the Valcyte finally kicked in. Now i don't crave carbs, however, i'm back to my desire for plenty of red meat protein (i suppose amino acids). But i do wonder if my body is able to make use of the fuel...i'm still often hungry.

    At least my weight has plateaued and I'm no longer swollen looking. Our cells just seem to need fuel to provide energy and to support our immune system.

    Continued success with your healing and again, thank you so much for all your posts, they've been immensely helpful.

    Many blessings,