My first LLMD appt yesterday.....straight to IV and oral abx.

Discussion in 'Lyme Disease Archives' started by vcamlin, Jul 29, 2008.

  1. vcamlin

    vcamlin New Member

    Okay, now that I have a little more time and energy, I might be able to think better.

    You know I've built up my "LLMD day" for so long in my head, I had everything pictured in my head with how it would go, how his office would look like, how he would look like, etc. It was nothing like I thought, lol. [Smile]

    I didn't have a wait time and he definitely took his time with me and was very sympathetic to Lyme. WOW, WHAT A CONCEPT.

    He did want to do another IGENEX and he said no matter what the result, he would keep treating me because I was so scared, "what if it comes back negative or something".

    He assured me that he's just going to use it as a guide, not a means to kick me out the door.

    He did say (I need opinions about this though, because I was so floored by all of the info, I didn't get to ask many of the questions that I wanted to) that he wasn't going to bother testing for Bart because it has such a "low yield". What do you all think of that?????

    Are the meds he's prescribing ones that might knock out both? That wasn't what I expected, I expected to be tested for that....or other co-infections. Hmmmm....

    He checked my ears and I have an ear infection (duh) in my right ear but massive fluid in my ears (Mastoid disease that I have to get tubes in my ears for, I should probably get that done before I start my meds)

    Then my throat that is constantly sore is red. Then....dun dun dun...my biggest fear of all...he felt a lymph node in my neck.

    Now, it's on the same side as my ear infection...and he said swollen lymph nodes can be caused by Lyme.

    But if anyone here remembers my story about my Lymphoma scare, that just put another seed of doubt and fear in me.

    It is very small and I finally felt it this morning...it is small...but now being a hypochondriac like I am, I can't help but wonder...because I've been sweating at night which is a sign of Lymphoma...but also of TBI's, too. But you know me...worry wart. [Frown]

    He did say that the Doxy and Amoxy that I tried before hand where a joke at this point. He said I tell me people, hey, if you are planning on hiking or being outdoors, "pop a few doxy"...not for people like me. lol.

    He said I had all of the symptoms of Lyme, but did mention that according to the CDC they want you to pull an IgG response for Lyme to consider it "reportable" and "true Lyme", which made me worry even more. But he said that's garbage.

    So, he is going to run that 24 hour urine test to test for heavy metals, a CD57, and to two IgG "essays" or something, which I will post about last because I have no clue what they meant.

    He gave me an rx, like I already said to get a u/s of my gall bladder to exclude any stones in there before starting IV.

    I was shocked that we are going straight to IV.

    He is starting me a week on Flagyl 250 mg 3 times a day (I think) a week before I get my IV in.

    I told him I'm afraid of having stuff around my heart and he said they are doing a regular IV (like you would in the hospital for fluids - short line, no catheter) because I have such great veins in my forearms.

    I was relieved.

    But now, I have to worry about trying to get my PCP really on board because they are sending her my protocol and they want her to order the IV, so everything will go through my insurance.

    But the nurse did say that if she won't, they will charge 100 bucks for her to do it, get it approved by my insurance through a "infusion" company who will handle all of it.

    I had to have an EKG there in the office because I had such a high pulse, almost 130.

    I've been having terrible chest pains, feels like it's right in my heart, but it came out perfect.

    Thank God! Just a high heart beat, probably from lots of pain and nerves.

    I don't start Flagyl until a week before I KNOW I'm getting my IV treatment started.

    They are trying to get home hospice to come out to my house every week to check on my IV, etc.

    Did I mention that they are doing 4 days on, 3 days off for a min. of 6 weeks??? Does that sound right? Because some of this stuff differs from you all, I get worried if he's doing the right thing?

    Along with Flagyl (at that point) 500mg (or something like that). Ugh, it's all so confusing.

    They gave me an rx for an Epipen just in case I have a bad allergic reaction to the antibiotics at anytime, such as throat closing. Ummmm. Scary. [Frown]

    I got Urso to prevent Gallstones, a container for my bm if they get watery so they can check for C-diff immediately. Sometimes (before Lyme) I was always prone to that because I'm stressed out person, naturally.

    He wants brand name only Flagyl because he said the generics are notorious for making people sicker than they need to be while on it.????

    It says that most patients have to be on IV therapy for 3 months.

    And they have a little bell that you ring on your way out when you are considered "better" or "cured" and someone rang the bell as I was leaving, and I broke into tears.

    I want to ring the bell. I can't wait.

    He didn't seem to worry about the fact about transmitting it to others through sexual contact, but you know how that varies from doc to doc.

    There's so much to absorb, so much money to pay, but at least I got it over with and I feel like maybe I have a chance of beating this.

    He also said, that in the scheme of things, even though he knows that for me, it's felt like forever since I got sick, it really hasn't been that long and he has high prospects for me. [Smile]

    He did say I was full blown Neuro Lyme. I'm like, "Yeah I thought so!"

    It was so nice to hear those nurses and that doctor kinda poke fun at the idea that there was "no Lyme in FL." and she knew EXACTLY who called me on the phone that day trying to convince me that I didn't...because my lack of IgG response.

    She said even if my IGenex came back neg, they will continue to treat me, especially since I have so many symptoms.

    He must be a good doctor because I have terrible ovarian pain, I have had it long before this ever happened, I mean years. He was feeling on my belly and said (MEN, CLOSE YOUR EYES!) are you on your cycle right now? Just getting off? (I was getting off) Does that hurt when I press here?

    I said "no" (even though it did, it always does) because I considered it not important because I've had it for so long, but he said "Oh that's weird because your left ovary is bigger that the other one."

    But I need not worry about that because I've had CT scans and 3 vaginal u/s to rule out any cysts or tumors, along with an ovarian cancer blood test.

    But I still hate that swollen lymph node in my neck. [Frown] Makes me scared.

    He said since I already had a large one in my groin removed and biopsied that I could be assured I didn't have Lymphoma...but I am still scared. [Frown]

    If my new doctor, who I really like, is hesitate to get too involved in this, I'm going to bring my positive lab result to THAT FIRST DOCTOR who blew me off with my bug bite and swollen Lymph node that my United Health Care letter said who would treat my Chronic Lyme (lol) and tell her that she owes me this because if she had paid attention, I WOULDN'T BE HERE RIGHT NOW!!!!!

    Okay, I've rambled enough, I'm glad I have you all, because I'm sure I'm going to be full of questions.

    [Smile]
  2. buttercakes

    buttercakes New Member

    Wow... It sounds like you have a great LLMD, Im so happy hes going to use IV abxs, I have heard good things from other lymies who were lucky enough to get them. It sounds good for you!! Most Docs. have differnt ways of treating,
    it doesent mean one is all right, or one is all wrong, just differnt ideas, and ways of doing things, and it certainly sounds like he is a good Doc. Try not to worry so much(I know its easier said then done)your now in good hands with you LLMD, things will gradually get better. Just my thoughts about Iv Abxs.... mabey you will feel better faster using the IV method???? Thanks for posting, I have been thinking of you. please keep posting and letting us know how your doing. Take care, Sandie
    [This Message was Edited on 07/30/2008]
  3. vcamlin

    vcamlin New Member

    Yeah, I have lots of things to do before I can really start, omg! I have lots of blood testing, heavy metals testing (urine), gotta wait for the pills that go along with it to get to my house, get an u/s for my gallbladder to make sure I don't have stones, find an infusion center for my IV treatment, set up hospice care for my IV, then try to get my PCP to get on board with ordering some of this so that my insurance will cover it. (oh boy).

    So, it will be a few weeks before I even get to start anything!
  4. brainfoggy

    brainfoggy New Member

    Hi I just wanted to chime in. I wish my doc had started me on IV right away. This is a sign he is aggressive in his approach. Sounds like you are finally on the right path and will start feeling better soon!!!

    I took it upon myself to call the Igenex lab and speak with the Med Director about my results and he suggested looking into babesia more... so he may be able to offer you some insight as well.

    Take care and good luck
    Mandy
  5. buttercakes

    buttercakes New Member

    Sure sounds like you have your work cut out for you, it will all be worth it, there is light at the end of the Lyme disease tunnel. Keep in touch and let us know how your doing. Good luck and take care, Sandie