Visit To New Secondary Lyme Doc LLND

2 Apr

Puzzled male shrugging wearing lab coat

 

Visit To New Lyme Doc LLND

Do you ever leave your doctor’s office feeling like you have accomplished nothing and wonder why you even used all your spoons for the day on the visit? That was this visit today. I left feeling like “here we go again”. The picture above looks just like how my doctors face looked. This is why I was hesitant to see anyone besides an LLMD.

My LLMD is pretty far away and always booked so I have been searching for a closer doctor who treats Lyme just for the bad days and a place to get refills easier. I found an LLND after hearing good things about him. He was trained under my current LLMD. This LLND also takes my Medicare so that was a huge plus. 80% of my bills will be reimbursed.

So….the doctor walks in and introduces himself and then asks me (Mr. No brains or memory) to tell him all about me and my medical history. Of course I have my mom there as always but he wants to know from me. I am sitting there struggling to find words or talk and forgetting dates. I finally told him “I have no idea what day or month it is so this is really hard”, he didn’t seem to care. I also forgot to take my pain meds for the day so I was squirming in my chair bitting my lip in pain.

He was taking notes and wanted very specific dates of for example; “what month/year did your IBS start”….etc. I can see how this is helpful info and he needs to know but between myself and my mom we had to guess on everything. Then if we were off by 3-4 months he would say “wait you just told me Dec of 2008 but this was Jan of 2009 so I am confused”. I wanted to say “just ballpark range it, I don’t know!!”

The point of this trip was to see why I have lost my ability to walk (which has improved slightly), if lyme is the cause of the issue, and also to get different pain meds such as the fentanyl patch and refill xanax. Well being a nature path he was unwilling to fill any prescriptions. He also said he’s only treated 6-8 patients with antibiotics for Lyme and he was not willing to help me with that he would just send me back to my LLMD.

His advice on the walking issue was to “see my primary doctor or neuro” …well duh but they do not believe in Lyme that’s why I came to you! His advice on getting my prescriptions was to “see my primary doctor”. I asked his advice on what supplements he recommends that would benefit me being so ill that I do not already tale on my long lost I handed him…. his response “why are you taking two forms of turmeric”. So basically no answer.  Thanks for nothing.

He wanted all new blood work for everything and didn’t really care that my LLMD said I have chronic lyme, babesia, bartonella he wants to have his own tests done. I almost felt like he was an IDSA doctor. I mean I know he believes me but he wants solid proof before he treats me with whatever meds (supplements) he says he can help get me “normal” again. His nurses said he “works miracles” and I have heard he does so that is the only reason I am trying him out.

My quality of life is poor and feeling like dying daily and never seeing the outside world is no way to live. When I tell the doctors how I live I know they think I am exaggerating but I am not. My day can be summed up in one sentence; I wake up, walk to the living room to lay in my chair to watch tv, eat dinner, and then go to bed and lay there until I fall sleep if I can…period.

The pros: The doctor did rule out any mold issues. He also said my herniated discs in my c-spine and back are most likely from lyme disease which confirmed what my LLMD told me. He ordered too many blood tests to write here or remember so there will be a ton of results in 3 weeks to go over. He did say he can help me with my thyroid.

So once again I left another doctor office feeling just as lost and confused as always. I hope he will find something solid in my blood work and he will at least try to help me instead of sending me back to my LLMD. He is the same guy I called 6 months ago for an appointment and he said I was “too complicated to treat”. I told him this time I just want to try his methods of treatment out if he could just give me an appointment but I can tell he doesn’t want to treat me.

Now all of the above sounds like a bad day but to me I look at the positive from the day. I was able to get out of the house, the clouds in the sky were beautiful and I got some fresh air. So it wasn’t a bad day at all. Took a shot of the car ride and sky and was able to edit the picture below. Enjoy the little things and always try to smile.

 

clouds sac

 

– Have a wonderful week and hugs to all of you in pain and feeling alone.

 

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14 Responses to “Visit To New Secondary Lyme Doc LLND”

  1. Louis April 2, 2013 at 12:55 am #

    I enjoy hearing your blurbs and updates periodically.
    Hope he can help you, and love your attitude.

    This is definitely a struggle, but keeping your mind strong-> strengthening your body.

    Hang in there

    • 49erBry April 2, 2013 at 12:59 am #

      lol thank you. Hope you are improving?

  2. Luke April 2, 2013 at 1:04 am #

    Your situation today highlights the reality we all face. I think some parts are beneficial for others to see though.

    1. I recommend people see specialists to ensure something else isn’t the cause (rule everything else out).
    2. Hormone testing is borderline worthless for most if not all men. Our levels spike all day. The reality is they would say we all are either hypo or hyper……thyroid meds never worked for me so I stopped.
    3. Having worked with my LLMD for almost five-years I have given up on trying to find a closer primary care doctor to help. They want to do the same thing: blood work, hormone testing, yada, and more yada. I decided that my LLMD writes the treatment plan (one I believe in) and follow it. I run new herbs, supplements, etc. by him. What other doctors think is irrelevant to me. I believe in my treatment plan and stick to it. Not to mention my LLMD is on the cheaper side and one of the best in my opinion.

    Over this five year curse/battle I have learned to fight for what I want and need. The doctors work for me and if they don’t provide the service I need and/or want they’re dead to me.

    • 49erBry April 2, 2013 at 1:15 am #

      Well said Luke and I agree with you. I’m at the point where if one more doctor pisses me off they are getting am ear full and I will never return. One can only take so much eye-rolling, mocking and testing before they start to feel like all doctors are uneducated and only out for your money. I want them to listen and at the least help me feel a bit better. I only like and trust my LLMD. I hate that we all have to keep searching for years until we find a doctor we “kind of” like. Took 28 years to diagnose me then once I was diagnosed one thing after another started to be diagnosed. Why now? I’ve had all of this for ages. Where are the compassionate doctors? I would take Dr. House any day. Sorry to hear of your struggles and I hope you are progressing. Take care

      • Luke April 2, 2013 at 1:24 am #

        I have come back from the grave!! Weekly chiropractic care has been my pain management throughout since I have a high tolerance and general fear of narcotics. I choose chiro over methadone.

  3. Bill April 2, 2013 at 6:39 am #

    I am so sorry this hell continues for you. I know the feeling of seeing a new practitioner and the hopes that usually accompany it along with he feeling of dread that you have to go through your whole history again. The only partial antidote I have found for his is to keep my expectations low and think of just one thing they might be able to help with. Then if all else fails to do as you did and appreciate the simplest things….the ride or clouds or sun or just getting out. Definitely give yourself praise for being able to even do that which is so much more than most “healthy” people will ever be able to do. Best wishes…..

    • 49erBry April 3, 2013 at 12:12 am #

      Thank you Bill. He said he may help get my thyroid working better which means he may give me armour which most doctors refuse to let me try. So there are some pros. You are right helping with one thing can make a world of difference. I’m not mad or angry I was just frustrated with his lack of knowledge about Lyme and Picc lines. I hope my blood work reveals something maybe others did not catch. Hope you are doing well and thanks for checking in all the time. Take care.

  4. Christina April 2, 2013 at 10:02 am #

    I can relate to the ignorance and arrogance of doctors. I think that might be one of the hardest parts of this disease. I saw a doctor with over 40 years experience a few weeks ago and told him my old doctor believed I had babesia and thats why I was not helped by the antibiotics. He actually told me people who have babesia have no symptoms at all unless they have aids and since I dont that cant be it. AHHHHHH! I don’t leave the house anymore its to painful to walk. My legs have lost thier strength and I have lost some of the control of thier movements. I can’t get painkillers because according to the doctors I have no diagnoses. But I found a way to relieve some of the pain and I think it might help you to Barry. I went to a feed store and bought 10 pounds of whole kernel corn feed. I used a pillow case and sewed the corn inside. I nuke it in the microwave for 10 minutes and place it on my back knees or feet. The corn will hold the heat for hours and feels like a massage. It brings down swelling and pain. Also red wine is full of reservatol a natural fighter of babesia, and takes some of the edge off. It doesnt have the high yeast like beer so its better. Hang in there everyone. Big hugs for all.

    • 49erBry April 3, 2013 at 12:16 am #

      Wow that doctor you had Christina sounds like he is uneducated in Babesia. The symptoms are clearly night sweats…etc. I have been on pain killers for about 10 years now I think and have tried them all but was just hoping this doc could write a new RX for a new pain med or the patches. The corn sounds like it may help many with the swelling. Have you tried Cryptolepis for your Babesia?

      • Christina April 3, 2013 at 1:33 pm #

        I have tried it and didn’t really improve. I really would love to try mepron. I have heard so many good things. Illegally its 200 per bottle so I am waiting for it from a script so insurance coveres it.

  5. cindy moore June 21, 2013 at 2:41 am #

    Hi! I can relate so much I have been sick since the late 80’s diagnosed with lyme 1991 and the bartonella,babesiosis?mycoplasma past couple of years I haven’t been treated well I can’t tolerate the meds too well. I’ve lost my children,my career,my friends,pretty much everything. I was laughing at the cartoons. It reminds me of my favorite when I tell people I have lyme they say “oh really? Did you get bitten by a tick?” Oh my God, probably 20-30 times but that’s not the point. I’m sick and people act like its a faker disease. It has no clout but has symptoms that are unbearable. My daughter had lyme and the school insisted she had to be at school because “we have children with cancer and they come to school” But a child with cancer at times can feel better than a lyme patient. When did a school teacher become a doctor or nurse anyway. I have a lot of issues sorry! God bless you and its nice to know I’m not alone!

    • 49erBry June 26, 2013 at 11:34 pm #

      I’m sorry to hear what lyme has done to you. This disease is so horrible and truly changes people’s lives. Hope things get better.

      • cindy moore June 27, 2013 at 2:07 am #

        Thank you for the caring words. It helps to not feel alone and crazy. God bless you.

  6. Bettyj August 12, 2014 at 3:15 am #

    I feel for every one who has this lonely journey called Lyme Disease—

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