Lyme Disease Community
2.11k Members
1253991 tn?1300995664

Blood work is this negative for sure? One reactive band and symptoms, help

Hi all I'm a 20 yo guy and since September I've been feeling really sick. I hope someone can shed some light on my blood work and symptoms.

My symptoms:

- I'm fatiuged ALL the time.
- Muscle twitching all over my body.
- "Brain Fog" I feel mentally impaired and slow.
- Increased anxiety and depression.
- Short term memory loss.
- Chronic low grade fever, 99.5 - 100F.

I live in Kansas in the country and this summer I found several ticks on me that had been there for over 24 hours for sure. I just didn't notice them. I was wondering if I should peruse the diagnosis of lyme even though my family doctor says its negative? Does this sound like lyme? I have no joint pain.

I'm just worried, I feel sick and I don't know why. I also have developed markedly elevated liver enzymes which my doc also says is benign for some reason.

Thanks for your help :)
10 Responses
Avatar universal
(part 1 of 2)

Welcome to MedHelp --

Good for you for taking action!  First, to look for a doc, and then to look for another doc to be sure the first doc knew what he was talking about.

I would do exactly what you are doing.  The '24 hour' rule about how long the tick has to be 'attached' is really not useful, but the docs not up to date on these things really cling to that standard.  Ticks don't wear watches, so they don't know how long to wait before spitting the Lyme bacteria into your blood stream.

Finding a Lyme specialist is the next trick.  You will see the term LLMD used here ... it's patient slang for 'Lyme Literate MD', meaning a doc who thinks more progressive thoughts than the doc you just saw.  It's not a credential, and no doc calls him/herself an LLMD.  In fact, most LLMDs fly under the radar because the nonLLMDs try to make trouble for the LLMDs with the medical board for treating Lyme and its coinfections aggressively.

The sooner you treat, the quicker and more sure the cure, so you are wise to keep pressing ahead.  I had all the symptoms you are having, too.

(end part 1)
Avatar universal
(part 2 of 2)

So how to find an LLMD?  Your profile says you are in KS, so I would do three things:

1 -- email to

                    contact [at] ILADS [dot] org

and tell them what area you live in, like near Topeka or near Kansas City, or whatever, and how far you can travel ... they will send you names of docs who think the ILADS way.  ILADS is short for International Lyme and  Associated Disease Society, which is the main voluntary group for docs who think more progressively about Lyme.
2 -- Look around online yourself, but putting in searches such as

                    LLMD Kansas City

or whatever makes sense.  
3 -- You can also search for

                       Kansas Lyme

or Missouri Lyme, or whatever you're near

and see what hits you get.  

There are often local groups you can contact who can give you leads to a local LLMD.  Because of the deep divide in the medical community, LLMDs tend to stay quiet, so that's also why we don't post their names in the open here.  Sounds sketchy, but it's the way things are for now.

Let us know how you do, okay?  If you come up dry on LLMDs, let us know, and we'll brainstorm some more.

Take care –  and hang on!  You're wise to keep pursuing answers.

(end of message)  
Avatar universal
One suggestion for an LLMD to check out -- in the upper right corner of this webpage, there is a line that reads:

                  inbox / logout / my shortcuts

If you click on 'inbox, it will take you a private page that is not visible to the public here.  I am sending you an email there with the name of an LLMD I thought of who might be near you.
1211030 tn?1381140942
I would ask for copies of your bloodwork, sometimes they dont see a positive as it should be read.....
1763947 tn?1334058919
Shortly after my tick bite, over 20 years ago ( the tick was only on me an hour) I had all the symptoms you are describing. Chronic low grade fever, nobody could figure it out. I wish I knew about Lyme back then.

Your age qualifies you for financial grants to help pay for testing with IgeneX labs and money to help pay for an LLMD. Lyme tap dot org and limelight foundation dot org.

Good luck!
Avatar universal
You will want to get tested at IGeneX. They are a specialty lab that does more advanced testing. The screening test used in the two tier testing has at least a 30% false negative rate.  

If your PCP won't authorize IGeneX testing, then you need to find a doctor who will.  You might try a local Lyme support group to ask about doctors willing to order IGeneX tests.

Ultimately, you do need to see a LLMD. You could also have one or more coinfections, other infections (such as Bartonella, Babesia, Anaplasma, Mycoplasma, and a fee others) that come along for the ride from a tick. Your symptoms are consistent with Lyme, but Bartonella and possibly others can cause them, too. A LLMD knows how to look at the whole picture.

Note: I never had any joint pain or arthritis either. I haven't even had any muscle pain.  I've had plenty of rib and abdominal pain, though.  Have you seen the Burrascano symptom list on the ILADS website yet (under treatment guidelines)? When I first saw it I realized I had several symptoms that I didn't associate with my fatigue and brain fog, such as light sensitivity, tinnitus, loss of sense of taste and loss of appetite.
Have an Answer?
Top Infectious Diseases Answerers
1415174 tn?1453246703
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods