Tuesday, 1 September 2009

Day 254 - Lyme Disease

“Lyme disease is an infection that derives from a tick bite. The disease has a variety of symptoms, including changes affecting the skin, heart, joints and nervous system. It is also known as borrelia or borreliosis.

Lyme disease is caused by an infection from a micro-organism (Borrelia burghdor feri), itself transmitted by a bite from the wood tick, a blood-sucking parasite which normally lives on deer.

The wood tick is found in many areas, particularly in forests where deer are common. A tick will settle anywhere on a human body, but prefers warm, moist and dark places like the crotch or armpits. When the tick has found a suitable place on the body, it sticks in its probe to draw up blood, exposing the host to the risk of infection.

Some patients with Lyme disease feel like they have caught influenza - the symptoms may be:
  • drowsiness
  • headaches
  • mild fever
  • joint and muscle pains
  • swollen lymph glands
Interestingly, the disease only became apparent in 1975 when mothers of a group of children who lived near each other in Lyme, Connecticut, made researchers aware that their children had all been diagnosed with rheumatoid arthritis. This unusual grouping of illness that appeared "rheumatoid" eventually led researchers to the identification of the bacterial cause of the children's condition, what was then called "Lyme disease" in 1982.”*

*http://www.netdoctor.co.uk/diseases/facts/lymedisease.htm *http://www.medicinenet.com/lyme_disease/article.htm

I have managed to find a great online support community, and have across a number of people who have been suffering from New Daily Persistent Headache (NDPH). Although I haven’t officially been diagnosed with the condition, it’s refreshing to see others who understand what it is like to constantly have a headache.

One person with NDPH has been suffering for 18 years. Imagine 18 years with a headache! And me, who thought that over eight months was bad enough. Just the thought is barely conceivable.

I have been in touch with a lady who woke up with a severe headache in July last year which never went away. In March this year she was diagnosed with Lyme Disease and is now trying to spread the word as she is, finally, headache free.

She suggested I look into the condition. Having done some online research, it does not immediately appear that I have the illness as I have no other symptoms, although she told me that a couple of her friends with Lyme only have a constant headache and nothing more; another acquaintance of hers has the typical Lyme tired and constant headache but no other symptoms either.

She sent me a link to this interesting video documentary on Lyme Disease.

Whether I am afflicted with Lyme or not, I am helping her to spread the word as she only managed to find out what her headache was caused by through her constant persistence and desire to get a diagnosis. Once again, another thing to look into.


  1. I only just found your blog...I too have had a mystery headache/migraine for eight plus months. It was kinda weird that you would mention new daily persistent headache (which I read about months ago)and Lymes all in the same breath. I only just heard about Lymes today and can't wait to talk with my doctor.

    I know for me, God had a bigger plan...He's drawn me closer to my parents and family, and more importantly He's drawn me closer to Himself. As a Christian, When I find all tests and treatment come to no avail, I find I can only lean on Jesus, my comforter....the one who knows my pain and sometimes, deep discouragement.

    Hope you find answers soon.

    -someone who knows

    John 3:16
    John 14:16

  2. I had a sudden migraine in 2008 that lasted all day, for three weeks, at extreme intensity. I had sleepiness by 10 am with a full night of sleep, and even again after an afternoon rest. I had myoclonic jerks to fluorescent light, flashing lights, car ligths at night, tv. I had 2 sleep studies, epilepsy, blood work, one lyme, EBV (positive in 2008 but told sleepiness is not caused by epstein, hair doctor, eye docs, neuro opt doctors, neuro and endocrine tests - everything normal (but pos. epstein which will now redo). My serum ferritin below normal (checked it because losing hair).
    Have had headache everyday for 3 years - worsened by light flashing, flourescent. Headaches managed with L-carni, alphalipoeic, magnesium, but no one knows why jerks.
    Now teen child has for 9 months shown back aches, sleepiness, memory loss, hand tremor - blood and thyroid and lyme normal (positive but only one band so told negative), worsening this
    month - very sleepy, can't concentrate, hands shake, aches continue, redid lyme in past 2 years 3 times normal, asked to have it done again cause woke up and knee gave way, now positive (believe poor diag. tests or is so chronic from 8 years ago when first had it - was treated with antibiotics, told it was gone!) - please help! Will find lyme friendly doc infectious disease in NY CT NJ area if you know of people - heard of Cameron - good/bad. Wonder if Epstein and Lyme both cause these headaches. Did read article SDPH caused by infectious mono, so wonder if my condition may be Lyme, and concerned how best to treat child. What of neuropsych tests SPECT scan- what is done with results - is treatment tailored for cognitive end as well as other manifestations? URGENT!!!!!

  3. Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!

  4. i'm going on 13 years with headaches/migraines and am gonna look into it. Any referrals for los angeles?

  5. Peter in Scotland7 May 2012 at 02:36

    If you're going to Los Angeles, you could do a lot worse than to go to dr. Wouter schievink in cedars sinai hospital in LA.

    I've just had the LTT Melisa test for Lyme Borreliosis. Results before Friday 11th May. I'm actually hoping for a positive test so I can be treated and not dismissed with all this psychosomatic nonsense the doctors pull when they can't work out shit.

  6. Lyme disease occurrs in many parts of the U.S. So-called deer tics are the carriers of the disease and if there are deer in your area there are tics in your area. This author describes her tic bite, her treatment, and how you can prevent Lyme disease.

    orthomolecular therapy

  7. I have daily headaches for 10 years now, sometimes they are pressure/burning headaches sometimes they're cluster headaches (those are the worst).

    Boala Lyme Simptome

  8. My daughter was diagnosed with Chronic Daily Headache. She was sick for a year before being diagnosed with Lyme and Bartonella. She got sick Oct 2007 and the summer of 2010 she was feeling fantastic and NO Headache. She had had it so long that she didn't even realize when it was gone. Trying to come off treatment, she gets headaches again, but they are not 24/7. Wearing sunglasses helps because Lyme makes her light sensitive, especially Florescent. She wears the sunglasses inside and out, day and night. It helps. THIS is Lyme. We live in NH.

  9. How did she finally get diagnosed? Via local NH lab/doctor, or via distant lab like Igenix in CA?
    We're in NH and struggling with identical situation. Numerous sources have told us that simple ELISA Lyme test done by local hospitals/labs are notoriously inaccurate.
    I'd love a referral if you're willing to post.

  10. I got my headache on Feb 8, 2010 and it has never gone away. I saw multiple physicians, tried every possible medication, had lumbar puncture, all blood test for autoimmune diseases, checked with a oral surgeon for TMJ syndrome, and even tried acupuncture with no success. I am a very reactive person so most of the medications I tried I wasn't able to continue due to allergic reactions to them - mild to moderate anaphylactic reactions - not just nausea, etc. Every year or so I read up on NDPH (which my neurologist did diagnose me with and said "this is not the same as a migraine"). Whenever I tell people about my 24/7 headache and how it spikes to severe unexpectedly or is tolerable at times they usually all say "oh that's a migraine". I knew it wasn't. Anyway, last night I was reading an update on NDPH and found the information of Lyme and the correlation with NDPH which I had never heard of. I intend to contact my neurologist and see if he has heard of this connection and get tested to see if I have had Lyme prior to developing the headache. I am sorry for all of you that suffer from this. It is hard to hear "well there really isn't anything we can do". 7 years...... with no end in sight is hard to live with. Maybe now I have a chance to find out some new information and treatments.

  11. Wendy, have you had any luck with neurologist and the Lyme connection? I am also pursuing this and would love some insight.