Blood Results & Visit To LLMD

3 Dec

Blood-Tests-Helping-Fibromyalgia2

Blood Results & Visit To LLMD

*I am extremely exhausted and I have to leave the house, get up early to give another 20 vials of blood in the morning so this will be shorter than the whole story.

My blood results for mold, heavy metals and other stuff came back. My heavy metals looked good. My mold showed a lot of negatives and my black mold was negative which is a surprise since I lived in a flooded house. But I did have some mold issues just not sure which ones. I was also told I have bad genes and a “double whammy” gene which makes me more susceptible to lyme disease and mold.

My EBV and HHV6 came back negative so I think I got rid of those for a while. She thinks I have leaky gut. We are testing for a “rope worm” which she said is a newer parasite and hard to kill. I was told I also have a new coinfection besides Babesia and Bartonella, it is a protozoa but not sure the name. My selenium is low. My lyme, bart, bab are still active.

I was told I have “chronic dehydration” from this LLMD before I even mentioned it to her that I have it. My PCP last week said he has never heard of it and I was stupid for thinking that. So now my ER doc and LLMD said I have chronic dehydration. She believes my body is missing a hormone that helps absorb minerals and water? Therefore my sodium and other things were low even though I eat a ton of salt.

I was told to get rid of our smart meter from PG&E and stop drinking from any plastic bottles. She also thinks Vit D could be causing harm to my body due to converting in my body? I’m tired so I don’t really know what she actually said.

I will be taking Delextro or Delektron (?) she spelled it two different ways but it’s for absorption. I will be drinking a cap full of E-Lyte water mixed into my water for concentrated electrolytes. I have a standing order for a home nurse for IV fluids, ringers and Myers cocktails. I was given Pre-Biotics and told to stop taking Florstor. I will be getting Renolex and A-Fung for ringing in my ears and antifungal next visit. I will doing a lot of blood work and a stool test for parasites again.

So she pretty much said my PCP was an idiot and knows nothing. She said my lyme culture is 99% accurate and cannot be denied by any doctor. I am off to bed….. hope you all are having a better day.

____________________________________________________________________

Advertisements

15 Responses to “Blood Results & Visit To LLMD”

  1. Rachel Metzdorf December 4, 2013 at 8:45 am #

    Hi. I have black mold along with lyme, babs and Bart and who knows what else. Very disabled. Bed and home bound for over a year. Had all this way over 20 years. Do you still do bicillin. Did you start slow. Have you done IV. Tx has been so delayed for me and my CNS is severely affected my it I fear I will not make it. I’ve had a stroke. Right now I either might have a hematoma or infection from bicillin. My daughter takes me to doc today. Riding in a car is horrible for me. Hav to keep pillow over head due to motion and sensory issues. Can’t drive or do anything including walk. I’m in MO and am trying to find the best llmd I can. Any suggestions. Thank you.

    Rachel

    Sent from my iPad

    >

    • 49erBry December 5, 2013 at 11:32 pm #

      Hi, I stopped doing bicillin a year ago i believe. I started aggressive at 3-5 self injections a week. I have done, IV abx, Oral abx, injections and herbals. Most likely you have a hematoma I had a bunch of them from the bicillin. I also get very car sick so i understand. Sorry to heart about the stroke let’s hope things will start to get better. Best wishes and keep fighting.

  2. Lemons 'n Lyme December 4, 2013 at 8:51 am #

    Good luck with everything! At least you are starting to get things figured out. I just did testing for mold and I am waiting for the results. Did you do a blood test for EBV and HHV6? I’m about to do a blood test for a bunch of viruses and how strong they are. I’m pretty sure every lymie (especially if you are on abx) has leaky gut! Ugh, it’s such a pain in the butt!
    The whole salt/dehydration thing, do you get really dizzy and lightheaded, too?

    • 49erBry December 5, 2013 at 11:29 pm #

      Thank you 🙂 Good luck with your mold results! I did blood testing to check on the EBV and HHV6 I can’t remember the panels though. I had both months ago diagnosed from the ER blood test. I was using Byron white ebv dropper. With my dehydration I get dizzy, light headed, headache, feel sicker than usual with a fever and chills and it makes me pass out or can’t keep my eyes open it’s weird but I can tell what each symptom feeling worse means now. Do you have dehydration issues? You may have that bad gene.

      • Lemons 'n Lyme December 6, 2013 at 2:16 pm #

        I don’t have a major dehydration issue but a friend of mine has similar symptoms like that and they can’t figure out what it is (she has not been diagnosed with Lyme and I don’t believe she has it)… so I was just curious what that gene is. Has the Byron White drops helped? I take some of his formulas for other things.

      • 49erBry December 8, 2013 at 11:04 pm #

        The only byron white formula that seemed to help me so far is A-EB-H6 (EBV/Mono & HHV6) it helped wit my chronic strep throat and mouth sores and i tested negative for ebv and h6 this last time so that’s good.

  3. SHERRY SMITH December 7, 2013 at 7:20 pm #

    Dear Brian, Love getting your updates…………….hang in here something big is going to help you I feel it…….I went to he Dr this week and she will no longer give me meds………..and every time I go she asks me are you feeling like you could commit sucide? Im sick of it and am going to call the Director of the hospital and talk with them…………………keep me posted you Friend Sherry 🙂

    • 49erBry December 8, 2013 at 11:04 pm #

      I hate that they think it is all in our head and there is no compassion. Hope you are finding better days.

  4. Branwen December 8, 2013 at 10:08 am #

    Finally, you have a compassionate and knowledgeable Dr. with a sound treatment plan in place! I really hope the best for you, and I do feel things are about to change in a very good way for you! Please keep us posted! It really helps everyone to share our symptoms, diagnoses, tests we have or should have, and our treatments too! It seems as if we are all learning together, and many of the Dr.s are learning along with us (those that are willing to open their minds and hearts) My GP is eager to help me, but he has never treated Chronic LD, and asked me to help him by recommending books that I have read, and providing him with online information and websites I have found to be relevant and reliable. It is both empowering, and a little scary too, to be at the helm of my own healthcare! I love my GP for being so willing to help me, and as we learn together, I hope that this helps patients that may seek him out for LD treatment in the future. I live in Upstate NY, and, unbelieveably, there are NO LLMD’s in my area. (our tick population is considerable, especially this year, I have come to find out) Since I was diagnosed in June, I have heard so many stories of local people finding ticks on their dogs and themselves. The phlebotomist that I see for monthly blood draws said that she is drawing blood for Lyme titers constantly (unfortunately, these CDC criteria Lyme titers are about worthless and many people will go undiagnosed and end up at the neurologist, ENT, cardiologist, dermatologist, psychologist, over and over again. It kills me.) I try to give as much helpful information as I can when I hear these stories, but so many people are unconcerned because they are not knowledgable about Lyme Disease and, rely on the local commercial lab to provide accurate results. (as I did for many years) I’m so grateful for the blogs, websites, research organizations/advocates that are bringing awareness…it’s the only way things will ever change for us. Thank you, Brian! I hope you start to feel better each and every day! I have a feeling you will!

  5. Branwen December 8, 2013 at 10:21 am #

    PS Brian, you indicated that your Lyme and co-infections are still active…is your blood sent to Igenex or another specialty lab? I had two blood draws in the same week last June; one went to Igenex, and one went to the local commercial lab. The Igenex results were positive, while the local commercial lab result was negative. (no surprise)

    • 49erBry December 8, 2013 at 11:10 pm #

      The blood I sent to Igenex was always INT or Neg. I found out I was still active through the advanced-lab lyme culture when they grew 3-4 spirochete in my blood within 1.5 weeks which was fast. After 2 years of aggressive oral, IV and injection abx and lyme was still active so that proves that 10-14 days of abx does not “cure” anything and it’s not phantom symptoms. The lyme culture is 98% accurate, no false positives and it is direct testing versus the Igenex in-direct testing, the western blot is very inaccurate. Costs about $700 and your doctor will need to have to kit to mail out your blood within 24 hours. Good luck with everything! Glad your GP is willing to work with you that’s great. Feel better.

  6. Sonya Rose December 21, 2013 at 1:56 pm #

    If you don’t mind me asking, why were you asked to stop Florstor? I heard it was the best to take while undergoing strong antibiotic treatment, even before and after treatment ends. What prebiotic would you recommend? I have ringing in the ears, too. Keep us all updated on how your new medications are working. I wish you well!

    • 49erBry December 21, 2013 at 11:14 pm #

      Florastor is a good probiotic for Lyme but the doc said since I had candida and leaky gut to stop taking it and try the pre-biotic and vsl#3 together. I guess the active ingredients in Florastor can increase candida growth? Thanks for all of the messages. Hope you are finding some better days. Hugs

  7. annie April 8, 2014 at 12:51 am #

    Hi thank you for a great website that is very informative.
    You say you were tested for ropeworms? Can you please tell us how this was done?
    How do they test for this? A lot of people would be grateful to find out.

    Thank you

    • 49er Bryan April 9, 2014 at 1:07 am #

      Hi and thank you. It was a stool sample kit you had to mail off. The kit also came with a combo adrenal kit inside. My doctor actually passed away so I never did get the results back from probate so I can’t remember the name of the company. My doctor said she had just came back from a lyme seminar where rope worm was the hot topic and something new all of the LLMDs were learning about. I wish I could be more helpful.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: