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.
- 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.
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.
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
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.
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.
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.
Band 41 could be Lyme, or could be something else. It indicates the presence of the flagellin (little whip-like tail) on the bacteria, which Lyme have ... but so do some other bacteria. Also, the first immune antibodies to show up are the IgM, then a bit later as the IgM is trailing off, the IgG antibodies show up. So you are showing the later antibodies, meaning your immune response is lessening. Which is okay, it just has to be read into the tests properly -- that's why having a Lyme specialist is so important.
Also, these are the non-IGeneX tests that you had, and they are less than rock solid, because they look only for your immune system's reaction to the presence of Lyme, and they do NOT look for direct evidence of the Lyme bacteria themselves. Like finding a burglar's footprints but not seeing the burglar. The IGeneX tests look FOR THE BURGLAR -- that is, DNA bits of Lyme bacteria. The IGeneX website has good explanations if you want to read up.
Also remember that the diagnosis of Lyme is at heart a "clinical" diagnosis, based on the doc's assessment of your history, your symptoms, AND the tests ... but not ONLY the tests. The usual tests are so imperfect that looking only at the tests can miss a lot of genuine Lyme infections (tho IGeneX tests are better because they do not rely on the immune system reaction alone).
The doc will also want to quiz you about other possible symptoms indicating co-infections, which are 'bonus' diseases carried by the same ticks. These require separate testing and treatment, and a good doc will know how to figure that out.
You'll have to ask the doc about how to do the IGeneX blood draws ... there have been other comments here about the requirement to 'spin' the blood sample and so on, which not all labs or docs may be able to do ... if the doc and/or the instructions are unclear, you can call IGeneX labs and ask what is best to do. They are very nice people (in the Pacific time zone.) I think IGeneX also has its own test kit, which your doc may have or the lab may have.
My LLMD didn't do blood draws at the office but sent me down the street to a LabCorp office, armed with the IGeneX lab slips in hand. Hard to say what your situation will be, but you're asking all the right questions. Understanding what is supposed to happen with the tests, the test tubes, the spinning (or not), the mailing, etc. is a good thing to do yourself, rather than rely on the lab people to know it all. There have been some stories posted here about lab people totally messing up the blood samples, which is a waste of time AND money. Lyme requires us to learn to manage our own healthcare -- not a bad thing, to be pro-active.
Keep focussing ahead, as you already are. Lyme isn't cured in a day or a week, but once you have a diagnosis and get on meds, you may well see steady improvement, just not as fast as you'd like. Impatience is a good sign that you're strong and not wiped out like some of us were when were diagnosed.
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