Lyme, NDPH or Both?

Pain and Isolation

I’m two months and two weeks into my treatment for Lyme Disease. My headache (which I would have had for 6 years this week) is slowly diminishing. I have head-pain free days. I have days that are mostly pain free, give or take a couple of hours. My headaches, now only occasional, haven’t been past 5 on the pain scale in the past two months.

I should be jumping for joy, right? Well, I am, kind of. And I’m scared, too, because it could come back, or the arthritis in my joints could never leave, or the brain fog could never blow out to sea, or any one of the random Lyme symptoms could be with me forever.

I am optimistic. My first doctor insisted after thirty days of treatment that I should be fine and refused to treat me further. So I found a LLMD (Lyme Literate Medical Doctor) who is now treating me carefully, aggressively and will not give up.

A constant headache is a symptom of Lyme. Lyme tests are accurate only 60% of the time.  Think about that. Do you have any other symptoms? Achy joints? Muscle pain? Has your eyesight deteriorated? My doctor said that it is often possible to run from your symptoms for a long time – as I did – but eventually they catch up and overtake you.

You may think you are crazy (also a symptom) or suddenly have ADD or early onset Alzheimer’s.  You may have tingling in your face or chest pain.

All I can say is this: I have had Lyme all along. I know this now. For 5 years and 9 months I tried to treat a headache exclusively. If there is any chance at all that you could have Lyme, regardless of what previous tests have told you, please, please seek out a LLMD.

The treatment for Lyme has been rather brutal for me. I can stomach the massive doses of antibiotics but sometimes the pain is overwhelming, the fatigue makes it difficult for me to get my kids out to school in the morning and it is, in a sense, more depressing than the headache I have come to know and deal with.

I guess I knew how to push through that. This is new pain. I keep telling myself it will go away, I am getting better. Everyday without head pain should be celebrated because it is progress.

I can’t help be a little angry, a little cranky sometimes. Ultimately, I hope, I have found my cure.

I just wish I could cure all my readers here as well.  Thank you for all the support, comments and emails over the past months. I deeply appreciate it.

Living with chronic pain is a life altering, isolating experience. I hate looking at the past 6 years of my life, knowing how the pain was a shadow that went everywhere with me, my constant companion.

What will a pain free life look like? I hope to find out soon. I hope you do too.


Lyme, NDPH or Both? — 9 Comments

  1. I hope your lyme treatment gets easier over time as your head pain diminishes. Hopefully all the other symptoms will gradually lessen at the same time.

    Just out of interest, what is the treatment for lyme disease? I am still taking Dr Rozen’s doxy/singulair protocol and I have been told that doxycycline is coincidentally used for lyme disease.

    • Hi Wendy – The treatment for Lyme typically begins with Doxy. I took it for one month, then my doctor switched me to amoxicillan in the second month, then added zithromax to the mix this month. The doxy wasn’t quite knocking out the symptoms for me. I also didn’t tolerate it very well. Doxy is the standard though for Lyme with mainstream doctors.
      Are you getting any relief with the doxy treatment?

  2. Ever since your “New Year, New Diagnosis” blog, I have been checking daily for updates! My 15-year-old daughter has had NDPH for almost two years. She is also on the doxycyline/singulair trial but we’re in the last week of month three and it hasn’t helped a bit. Her 500mg/day of Depakote keeps the agonizing migraines away but hasn’t helped the daily headache…. I, too, am very interested in your exact treatment. Right now, she wants to go off all meds but I am too scared to let go of the Depakote as I fear she will spiral downward during the final quarter of school. I like to try new treatments or medication changes during school breaks, if possible. Can you explain what is “brutal” about the Lyme treatments?

    • I’m so sorry to hear that the doxy isn’t helping your daughter. My headache improved quickly with doxy the first time I took it (back in 2009), but then it came back.
      The lyme treatment has been tough on me because of what’s know as the “herx response.” At the lyme spirochetes die off, they break into pieces and send the toxins into your body making your symptoms significantly worse. (I’m not sure my scientific explanation is perfectly accurate, but that’s the general idea of it!) It cycles around, so you get worse, then better, then worse…it’s a rollercoaster. A few days after I began treatment my head pain had me in tears, but hasn’t been bad since. Last week my knee joints hurt so much that walking was excruciating. It’s up and down, but the “herx” is a good thing, because it means you are getting better.
      I went off all meds myself for awhile (over the past years) and I found it made little difference in my ability to cope with the head pain and I can understand why your daughter would want to do that. I agree that waiting for a school break would be ideal – you just never can tell how she will feel.
      Keep me updated! 🙂

  3. I’ve also wondered many times over the four years I’ve had ndph if it was Lyme.. Living in rural PA it wouldn’t be at all out of the ordinary! It’s very frustrating how the test results work, they seem so useless! I also have a lot of other symptoms. I once completed a Lyme symptom checklist that was several pages long and I checked off at least 75% of the symptoms. I have had no results with the doxy, indomethacin, or acyclovir that I took for headaches and are also indicated for Lyme but I’m still far from convinced I don’t actually have it. I just wanted to tell you how hopeful I am that you are on the road to recovery. I’m sure there is some fear in a new diagnosis.. You’ve learned to live with ndph but now things have been turned upside down and you’ve got something new to accept! And even after years of pain its impossible to be patient with the slow progress of your new treatment, not to mention the new addition of side effects of this treatment! I really wanted to encourage you to add some probiotics to your regimen. Short courses of antibiotics can really throw off all your body’s systems and for Lyme you’ve got to do long term big doses and it can really mess up your digestion and your immune system among other things. I’d just hate for you to get some other illness to have to fight too.. Minor or major, I know you just don’t need any more problems! I don’t know if your Lyme dr can help you with choosing something to build the “good bacteria” but I could definitely send contact info for a good friend of mine who is really educated in holistic medicine and natural living if you’d like. Antibiotics kill everything and people don’t always realize there’s good and bad bacteria. Good luck to you! One day at a time!

  4. Amy I am glad things are going in the right direction! I finally found myself an llmd and started doxy a couple of weeks ago… no reaction, except possibly a week into which may or may not be after trying the a couple supplements i maybe shouldnt have. I havent had any crazy herx, and my headaches havent diminished, in fact, i was going through my happy part of my month where i get a few days of little to no headaches (still take topamax) but this time it was a particularly long span so i was reluctant to start abx. But i see her again in a couple weeks so im just crossing my fingers that it just takes time and im not the lone few that doesnt get better. i actually only tested positive for babesia and bart on an IGG elisa so im still in that stage of what if it is not, but she told me i wouldnt just have that in my blood. Anyway, i wish you the best and please keep us updated! And for sure take those probiotics! I’m upping to 60 billion because i’ve never been so carb/sugar crazy in my life…

  5. Hi. I dont think I have the condition tht u hve bt I used to suffer frm herendes headaches n I knw how awfull it is n how life altering it is. Lying in bed all day jst wantin to die cuz the pain is so bad. When no one around u understands the pain ur in. I also hav a child n knw what its like to hav to get up n face the day for thm when u realy jst want to stay in bed and hide. Ur comment was posted awhile ago so I hope ur symptoms hav calmed dwn since. X

  6. hi amy

    i’m so glad to hear you’re doing well. my headache started this year in july and i’m still searching for my answer :). did your llmd treat you with oral antibiotics or iv? merry christmas and a happy new year!

    barbara, from switzerland

    • I’ve only taken oral antibiotics so far. I’m getting to the point that if i don’t continue to make improvements, I will have to try the IV. I could have asked / pushed for it, but have put it off as a last resort.
      I hope you find your cure quickly. 🙂

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