Checking In

23 May

The moment you think of giving up think of the reason why you held on so long

 

Just Wanted To Check In

Nothing new to report from my end. I am still in a lot of pain daily as usual and no good days. It’s been an insomnia kind of month so no good sleep. Nothing to really complain about, I know many other worse than I am and people fighting to live. I am still off antibiotics and taking my advance lab lyme test maybe next week.

Hopefully the lyme test will be positive and give me a solid yes since i hear it is 80%+ accurate. I am taking many supplements still and my heart and POTS seemed to calm down. My heart rate and pulse have actually been normal and I haven’t fainted in a while. Not sure what I did differently.

I hope you all are having good days and smiling even through the pain. Don’t ever give up or let your illness define you. Keep you head up and fight on, better days are ahead although that may be hard to believe.

 

Advance Lab Info

501 Elmwood Avenue, Sharon Hill, PA 19079

Phone: (855) 238-4949 · Fax: (855) 238-4946

questions@advanced-lab.com

http://www.advanced-lab.com

 

 

 

 

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12 Responses to “Checking In”

  1. discovertroy May 23, 2013 at 11:59 pm #

    Nice to hear from you, shame the symptoms are still hitting you. Did you ever check out saliva-testing.org?

    • 49erBry May 25, 2013 at 12:11 am #

      I did check it out but I am working with my LLMD now so he has me doing a bunch of testing. Not sure what’s next just yet. Hope you are doing well.

  2. Clarice May 24, 2013 at 12:10 am #

    Because you are able to stay so positive with what you have been and are going through I commend you. I was keeping a positive attitude but I must admit, with no Dr. (rather no Dr. that knows anything about Lyme) and rather tired of trying to 2nd guess what I should do – I am becoming weary. It is nice to read your posts though and I thank you. Clarice

    • Bill May 24, 2013 at 4:38 am #

      Day by day…that’s what I keep telling myself and sometimes hour by hour. Last week has not been bad. Had a methylation panel done…gives me something to work with at least….

      • 49erBry May 25, 2013 at 12:13 am #

        Update me on the panel Bill. Good luck and stay well my friend.

    • 49erBry May 25, 2013 at 12:12 am #

      Thank you Clarice. It can be hard to stay positive but you have to keep hope alive. Good things will come. It took 7 years for me to have a great thing some in my life. Keep holding on and I wish you the best.

  3. Posy Bass May 24, 2013 at 6:08 am #

    Hi, I’ve been struggling with Lyme and confections for years. In constant pain as well… My Advanced Labs culture was positive. If you get an initial positive result be sure to call them to have them do the PCR part, (I can’t remember the exact wording) but then they can differentiate from other spirochetal organisms.
    It was crazy that last spring my insurance declined to pay for IV treatment based on IDSA’s guidelines. Then after 6 months I stopped the drugs, maintained my picc and had the culture done. It returned positive, my insurance paid for 28 days this time around but again followed the IDSA’s guidelines because 28 days is curative even though I had been treated for 6 months and still had Lyme?!?! Crazy
    About 13-14 weeks into iv treatment I did make a big leap forward with (knock on wood) resolution of crippling insomnia and reduction in pain for a while anyway. More recently I’ve made very little progress. Feeling very discouraged.
    Anyway, a positive culture took the second guessing out of the equation for me and I am glad I did it! Unfortunately I had kind of convinced myself that I had beat the Lyme and maybe had some residual coinfection stuff going on….sadly it was not so.
    Much more to say but I’ll leave it at that.

    Take care of yourself and stay strong! Posy

    • 49erBry May 25, 2013 at 12:16 am #

      Thanks for the info! I would like to know for sure what I am dealing with so a positive would be nice but not so nice. I’m glad you know. But I am sorry you are not progressing very well. I haven’t progressed in over 2 years myself. Not sure if I want to stay on the abx route or what. It’s all confusing for little progress. Try to keep your head up and let’s hope you progress. Take care

    • Posy Bass May 26, 2013 at 8:17 am #

      Thank you! After a weekend (or in the middle of) of guests, staggering around, weak as sh**, losing my cookies etc, the preverbial hostess with leastest……(i am not tolerating my meds or maybe herxing) I’m starting to wonder about Paracelsus in Switzerland. It’s hugely expensive but my medical costs are already very high (insurance wont cover IV) and I am not making any progress. The idea of going somewhere and giving myself over (not being the one that’s directing treatment etc) is very appealing. I’m so confused and discouraged. You or anyone out there have a positive experience with them? Thanks, pb

  4. Posy Bass May 24, 2013 at 6:32 am #

    PS forgot to mention that a positive culture result using the DNA sequencing by PCR is an amazing 100% conclusive! (hope I’m using the correct terminology) there is of course controversy raging on about this test as well.., still fighting the notion that chronic Lyme could exist. So i say, “go for it!!” Posy

  5. Chris May 24, 2013 at 8:25 am #

    Thank u for info. I had ehrlichia. HGE. bad pain daily fast heart and profuse sweating. Dr says gone in blood but very sick. On pain meds. Christine

    Sent from my iPhone

  6. Bill June 1, 2013 at 5:10 am #

    Btw I had my Lyme culture done at advanced labs…it took about 2 weeks and gave me a definitive diagnosis…the western blot was suggestive but not conclusive. They can take a longtime however. Still trying to get a sense of what to do with he methylatin panel. In he meantime doing b12 injections and more glutathione….we’ll see! Let me know how your AL culture turns out. BTW what do you know about Frye Labs in AZ I think?
    Bill

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