Tag Archives: Western Blot

Advanced-Lab Lyme Culture (Blood Test)

2 Mar

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Advanced-Lab Lyme Culture (Blood Test)

I just wanted to quickly answer some questions I see often asked about the lyme culture test. The Advanced-Lab Lyme Culture (spirochete test) is what is called a “direct” lyme blood test. The other lyme tests are “indirect” and can be very inaccurate. I am told and guaranteed that the Lyme culture is nearly 98% accurate, no false-positives, and the test is very easy to read and understand, it will either say “positive” or “negative” and it comes with pictures (2″x2″) of the spirochetes grown in your blood if positive. There are no bands to figure out on this one.

The reason I highly recommend this test is because after 3 years of many Western Blot tests which were “INT/IND” or “Negative” and after treatment I was beginning to think my Lyme may have been in hiding but I was still disabled. I couldn’t understand how I could feel so horrible in a living hell yet my blood work would show nothing. Doctors would belittle me and say there is “no lyme in California blah blah” So I took the lyme culture as a peace of mind to know for sure if I had lyme disease and for proof to show to all the doctors who laughed with that “I told you so” look on their face when my Western Blot was negative.

So many people ask if it is worth it and I say yes it is. It is the most accurate test that I know of. All of my doctors including primary (IDSA) doctors even believe I have chronic lyme now. All of my LLMDs swear by the test and I no longer have to keep testing for lyme hoping to catch it in my blood.This was really a game-changer for me and my case so I hope it may help some others. If your primary has a problem with the test you can get advanced-lab to write you a letter by email that says “there are no false positives, it’s accurate and they stand by their test…etc”.

Cost?

The cost was $500 when it first came out (Dr B was also doing free tests when it was brand new) but it costs $700 last year when I had mine. I have Medicare and they do not cover it. I am not sure if any other insurance may reimburse you.

Where Do I Get The Test?

Your doctor or LLMD will have to order the test kit or have it on-hand so call the office and ask if they have it in stock or offer the test before you waste your time/energy driving there. Only certain offices will have the test kits so if your LLMD does have it then try a nature path or any other doctor that deals with lyme. My test was from a LLND not from my regular LLMD office. But that office no longer takes Medicare patients so I cannot go back to see him.

How Long Does It Take For Results?

This questions depends on your case of lyme. The fastest turn-around on getting the test results back is 10 days which I am told isn’t common so I think this means very active lyme or the lyme has been in your body forever (I’m not sure though). Most commonly results can take a month up to a few months I believe to get back. So you will need to be patient with this test.They are trying to grow spirochetes in your blood.

My test came back in only 10 days, I received a phone call from my doctor with the “bad news” then was mailed a letter from my LLND’s office that was from advanced-lab showing the positive results with a picture of 3-4 spirochetes in my blood. They even glow lyme green.

Special Instructions:

I cannot remember all the details but I know they only do the test on certain days and at certain times of the day so Fed Ex can pick up and get the blood out on time to ship it overnight ASAP after the test (if it is late you will need to do the blood work over again). The phlebotomist will need to read the instructions carefully and get the vials just right. You can’t be on antibiotics for 30 days before the test (I think it was 30 days or 2 weeks). I can’t remember if I had to stop other meds just for the day or fast but they will let you know at the office.

*I am not a doctor and I do not promote any companies, I am only expressing my personal opinion and what details I can remember. I could be wrong about some of the things I wrote but these are all things I have heard from advanced-lab their self via email or straight from my LLMDs mouth. This is also from personal experience.

Good luck and I hope you get the results you want! Stay strong lymies!

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Advanced-Lab Blood Culture Results: Positive

14 Jun

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Advanced-Lab Blood Culture Results: Positive

First let me start this story by saying I went to the ER last night for dehydration and severe pain. They heard me mention lyme and they pretty much gave me saline and 2 pills and sent me home saying my blood was normal and I need to see my primary not them. I hate my primary and I will be switching (she was the one who swore I had HIV and doesn’t believe in lyme). So I went home from the ER feeling just as horrible and they didn’t even ask if I felt better. My pain killers after 5 years have stopped working and my next option is pain patches since I have tried all the severe pain meds already. Yay for the ER.

Results

It hasn’t even been 3 weeks since my blood was taken for the Advanced-Lab Blood Culture and my LLND called yesterday and said he had some news. So this morning my mom made the call as I overheard the results of many blood tests. First test was the culture and he said it was “positive and they were able to grow some spiros and my lyme is still active”. My IgA1 and IgA2 Antibodies are low. My white blood cells lymphocytes (cd8) are low also.

So after 3 years of INT/Neg Western Blots which I knew were inaccurate I finally got the positive. Also after 2 years of aggressive treatment my lyme is still having a party in my body. My LLND who hates Picc and abx treatment suggested I go back on a Picc and abx asap.

Feeling horrible so that’s all I can manage to write for now……………..

Stay strong everyone and don’t give up!

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Taking A Break – Latest Blood Work Results

15 Dec

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Taking A Break

 

My Latest Blood Work Results

After my last blood results a couple of months ago it was thought for the second maybe the third time in my life I definitely have Lupus. Like I have said before it runs in the family and one doctor will say you have yet another will say you do not. My rheum and LLMD thought I have it.

My new primary doctor (who I am not a fan of) thought I was so partier who was up to no good I guess although I told her I have been bed bound for the past 3-4 years and I don’t do anything. She tested me for Hep C, HIV, Syphilis and some other STDs. I was also tested for Lupus, Lyme, Vit D, Thyroid, cholesterol and a Complete blood panel.

 

My results:

Lupus – Negative! (was positive/ high ANAs last month)

HIV, HEP C, Syphilis, STDs – Negative

Western Blot #2 – Negative on all bands (was INT on bands last test)

Vitamin D – Borderline low/deficient (I took 50,000 IU already and now 6,000 IU per day for 3-4 years)

Thyroid – Borderline low (take levoxyl daily)

Cholesterol – High on everything (I eat/drink healthy, don’t smoke, don’t drink…etc)

 

I am told that my double C677T MTHFR mutation can cause bad cholesterol which makes sense to me because it’s not like I’m overweight and eat fast food all the time. I eat maybe 2 meals per day and usually chicken and veggies and I drink either tea or water. So it was a shock to see my cholesterol so high. It also runs in the family (genetics).

My Western Blot is going to piss me off because my PCP will say to me “SEE I TOLD YOU LYME IS NOT CHRONIC AND YOU DON’T HAVE IT”. Then I will have to explain how inaccurate the Western Blot is and about false negatives all over again like I have done time and time again with PCPs. I already explained to her all of my weird symptoms that only fit Lyme disease and conifections but she didn’t seem to believe me. She kind of gave me the “quit being a baby look”.

I have nearly exhausted all my primary doctor (PCP) choices who take my insurance in my area and I don’t drive so I need to stay near by. Plus this doctor is at a well known medical center which I like or else I would keep looking for a new doc. But after not finding a good doctor over and over and over you just sort of give up. This doctor on her web site said she “deals with Lyme” yet she knows nothing about it.

So my blood work once again had some good and bad in it. But nothing will get me down during the Holidays, I love Christmas and I plan on making some deserving people happy with my gifts. The Holidays are about being close to those you love and spending time together and not about the presents but I just like to spoil my little buddy.

 

Antibiotic Break

I am taking a break from antibiotic at this time. I did antibiotics, injections (IV recently) hard and heavy for 2 years straight and I am showing no progress. I think it is time to let my body and organs rest. I am taking supplements and focusing on my immune system now.  I never have any good days and I never leave my house (literally). At this point I am lost and trust no doctors and I feel I need to just enjoy football and not have to worry about an IV in my arm.

 

My heart goes out to all the children and families in the shooting today. So sad.

 

-I wish you all a safe and happy Holiday.

 

 

 

 

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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