Chronic head pain with fatigue? Get tested for Babesia, not just Lyme!

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Chronic head pain with fatigue? Get tested for Babesia, not just Lyme! Empty Chronic head pain with fatigue? Get tested for Babesia, not just Lyme!

Post  Casey on Tue Nov 22, 2011 2:18 pm

Hi all,

A few of you oldie but goodies may remember me, I don't come 'round here often any more. For background on my migraine history, my last post, search the post "OMG...a cure...a partial cure" from Jan 2010, and you can also see my blog about my wildlife experience at if you are really curious.)

I'm not offering up a cure for everyone with migraines, but I wanted to let you know there is a light at the end of my tunnel, and some of you may be in this tunnel with me. I took me well over a decade to get diagnosed, so this information came at a price!

For anyone who has chronic head pain with fatigue and/or other inexplicable symptoms, who has been told the cause is genetics, unknown, bad luck, or questionable diagnoses I URGE you to get tested for tick-borne pathogens, because Lyme disease is the fastest growing disease out there, and so are the other pathogens carried by ticks.

Why aren't you hearing more about this? Short answer: politics, and Infectious Disease Council in the pockets of HMOs, resulting in uneducated doctors and clueless media. For more, watch the documentary Under Our Skin. Suffice it to say we as a country are wholly uneducated on tick-borne disease that is now epidemic and wreaking havoc on people’s lives without them knowing what they have.

But what you need to know is that Lyme is the only culprit, in Dec 2009 I was diagnosed with Babesia, a parasite spread by ticks that is in every State, though even the CDC doesn't report it as such, despite the fact it is even in our blood supply (and not being tested).

So what you should know is
1) Babesia and its related tick-borne pathogens can cause serious migraines (and ultimately, death for some people) and are epidemic in the country now
2) Most doctors do not know this, and will not acknowledge what they don’t know that they don’t know!
3) The average test for Lyme is wholly inadequate (why? See #2 and the documentary). If you are going to get tested, the Western Blot test, the standard blood test that most doctors do is very ineffective, produces way too many false negatives. You need to send your blood to the Lab IgenX to get an entire panel done for Lyme and Babesia. Even the CDC has shown 96% accuracy in IgenX’s testing.
4) Lyme and Babesia and other tick borne diseases are commonly misdiagnosed, or under-diagnosed. A Harvard MD has shown 91% of deceased Alzheimer patients tested positive for Lyme spirochetes in the brain. Many people with MS are getting tested positive for Lyme. Often people with Babesia are told they have fibromyalgia and chronic fatigue and left at that.

How is it going? Slowly, because for me treating the Babesia means feeling worse before you feel better, which is very hard to do when you need to work. So I had to postpone treatment for many months. I am doing it now, and I am not very tolerant of the treatment because it makes my headaches worse, so I have to go slow. ( As your body kills off the bug, they release toxins that make you feel worse, you have to focus a LOT on detoxifying your body.) But one thing I know for sure is that I do have the parasite, and it is in my brain, and it causes pressure and constant headache, one of the reasons that the ONLY drugs that have helped me over the past 15 years, in large part, have been triptans. It is like malaria, but much harder to get rid of, but it is possible. The major symptoms are chronic headache, major fatigue, and at some point in time sweating or hot flashes - maybe. Babesia not only does this, it can affect your vision, and it definitely messes with your hormones (which can create more episodic pain). I am slowly getting more energy back – now after I exercise for an hour, I am very tired, but I don’t pass out on the couch, and I recover after a couple hours. Slow but steady.

If you are doubting all this, that is good, so did I, a healthy dose of skepticism will get you far. But spend the money to get tested if you have to – only at IgenX lab (unless you have a Lyme specialist who knows of the other 2-3 labs in the country that are as good), and better yet, if you can see a Lyme specialist, even if you have to drive hours, do it, it’s worth it. I have a wonderful Lyme MD whose office is a non-profit (!), only 20 minutes away, so I am very lucky. A good Lyme MD will also test you for other things your average MD won’t, for example, not surprisingly my thrashed immune system is also fighting Epstein Barr virus as well - no wonder I’m tired, working full time with that and Babesia practically killed me.

Being a wildlife biologist, for years I asked neurologists to test me for Lyme. Most wouldn’t bother, the few who did just didn’t know about the testing issues, so all came back negative negative. Ironically, as far as we can tell, I am negative for Lyme, for which I am very thankful. But not one neurologist had even heard of human-contracted Babesia (for which there are 19 species, and so far our labs only know how to test for 2!)

So anyway, SORRY this post is so long, but I had to share, as my discovery has been life altering. For the fist time I am finally looking serious into adoption – and not of another dog, a human this time!

Happy Thanksgiving everyone.


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Post  tortoisegirl on Tue Nov 22, 2011 10:02 pm

Hi! I felt the need to reply and say I agree 100% with you and its something to be considered. I have done a lot of research on Lyme and its co-infections being a potential cause for some NDPH cases. I have it other diagnoses like fibro and IBS, so that made me strongly consider it. Its a scary group of conditions that can make you go slowly downhill with all sorts of symptoms. Ridiculous how the medical community backs a test that is so inaccurate and denies that people can get the condition outisde of Conneticut and not get a rash and such. I am however unfortunately far from convinced for myself though (onset and symptoms and region don't fit). If I could find a Lyme literate doctor/lab that took insurance I would do the tests, but right now its not in the cards. Seems like the Lyme doctors have ditched the insurance companies.

Hope you get relief soon! Just curious: Is your reaction Herxheimer characteristic, or something more involved? Did the oral antibiotics work or did you have to do IV, or are you doing something more natural? Were you able to pinpoint your exposure location based on your headache onset? For me it would have had to be No. CA in December when I was indoors except for shopping trips and such lol. Got the headache in January when I was back in AZ. Best wishes.


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Chronic head pain with fatigue? Get tested for Babesia, not just Lyme! Empty testing is key

Post  Casey on Wed Nov 23, 2011 1:15 am

If you have a doctor who is even a little on board, I'd try and pay for some tests if you can swing it, it is worth it. The biggest problem is getting the meds for Babesia covered, they are not cheap and Medicare gives you a hard time - another reason why it is good to have a Lyme MD as your advocate.

As a wildlife biologist I spent a lot of time outdoors, being bitten by ticks more than a couple times, though I never got the rash (which not everyone does). When my migraines began in 1994 I was working in an area now known to be suspicious for Lyme, but back then everyone was still saying there was no Lyme in SoCal, and that it was only carried by deer ticks. I am confident I was also reinfected in 2004, when I was working among ticks again, and was immediately symptomatic (in retrospect, had no idea what was wrong at the time, but I got very ill and slept for 22 hours straight after being reinfected. After that the chronic fatigue and migraines worsened, improve a little, then slowly got much worse. The problem with theses diseases is that you can be asymptomatic for a while, or have atypical symptoms, or not test positive until you start fighting them and the tests show heavy antigens. Another reason to be tested...

I have three good friends who have Lyme AND Babesia, none are biologists, two even live in the desert. One is still on mepron, but after taking it for a few months she told me her excruciating pressure headaches finally disappeared and it was miraculous.

Lyme and related diseases are also carried by dog ticks, which were much more common where I worked, and dogs can get Lyme, too. Lyme and Babesia are in every state in the U.S., even though the CDC doesn't report it adequately.

As I don't have Lyme, I didn't need to go heavy on antibiotics, though I did take some like flagyl and azythromycin for the Babeisa. I took mepron for Babesia, which didn't do the trick, now I am on malarone. My reactions are typical Herx reactions, but as you can imagine Herx'ing tends to hit your weak point the hardest, which is my head, thus making my headaches worse, more stubborn, more frequent.

There are a lot of non-pharmaceuticals (like Enula, an herbal remedy that also produced Herx reaction in me big time) out that can at least help kill off both Lyme and Babesia, if not cure you. If you want more info email me at



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Post  Anna's Mom on Wed Nov 23, 2011 2:41 pm

Renee, just want to say first of all that I would never forget you.

Thanks for stopping by now and then for updates. I remember your former post about this discovery for you.

I know it is a long and hard battle, but you can do it.

It is so depressing how docs fight this. Very, very much where I live. It is crazy. But it is what it is.

I have friends who are battling it. They have to go to other states to get help.



Anna's Mom
Anna's Mom

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