Thankfully Recovering

My daughter walking on air at the New York Botanical Garden.

It has been 11 months since I was diagnosed with Lyme and nearly 7 years since my New Daily Persistent Headache began. I think I am finally recovering. I think I am ready to rebuild my health.

I still have headaches, but not daily. Sometimes not even weekly. That alone is something to be tremendously thankful for – and I am.

I haven’t come out of this without a few battle scars. My mind is not crystal clear like it used to be. Okay, maybe it was never crystal clear, but now I have trouble remembering things, occasionally I type words that are different than the words I mean to type and things get generally mixed up around here. And no, I’m not that old that this could be chalked up to age.

By the end of the day I have trouble walking up the stairs because my legs hurt (typical Lyme). And 11 months of antibiotic treatment has left my digestive system in a bit o a mess.

I’m done complaining. It’s been a long road. I’ve accepted that I will never be who I was before this. It’s okay. I don’t have a headache today.

It’s strange sometimes. It’s been so long since I have felt well, that I am not sure how to handle it. Β I feel a little bit like an ex-con who is trying to fit back in to society after 7 years in prison. I fear that I will be thrown back into pain at any moment.

This is the best problem I’ve had in ages. I’m so thankful for it.

Wishing you all something to be thankful for this holiday season.Β 

Amy πŸ™‚


Comments

Thankfully Recovering — 21 Comments

    • Yes, I tested positive last March for Lyme, and last December for the co-infection erlichiolis (which one of the few symptoms include headaches). I did not test positive the first 3 times I was tested, over the course of three years.

      • Hi Amy,
        Thank you for the quick response. I ask because I have recently been given a clinical diagnosis of Lyme by a LLMD. I have had chronic daily head and face pain/teeth pain for 4 years now. The regular lyme test was not positive, but he is sending me for a more sensitive test. I guess the lyme tests are notorious for showing up false negatives. Can I ask how your headaches began? Was it sudden? What type of symptoms did you have when it started. I remember getting what I thought was a sinus infection and the head pain/pressure has persisted ever since.

  1. Hi Lynn,
    My headache came on suddenly. I had a strange (not-typical Lyme) rash on my stomach and leg aches and pains in the month or two following the start of the headache. All of my neurologists said the leg pain/rash (which went away) was unrelated since my lyme test was negative.
    I think the lyme tests are accurate 60% of the time. I see a LLMD now, who diagnosed me without the positive test result. I did have a positive erlichiosis (not sure of the spelling!) test.
    It will be 7 years in March since this mess began.
    Cold/flu like symptoms are commonly the first sign of Lyme after a bite – which many people dismiss or overlook.
    I have been in touch with others who were diagnosed with NDPH and it turned out to be Lyme. The treatment could take a while – the headaches still come and go and there have been times when I was afraid that I wasn’t getting better. You most likely have a fight ahead of you to get better, but you’ll get there eventually. I know this has been the case for many of us.
    How is your treatment going so far? My symptoms all got much worse before getting better!
    Amy

    • Hi Amy,
      I was diagnosed 3 weeks ago by a LLMD, he has started me on herbs, a bunch of them, cat’s claw, androphis etc in preperation for the Ignex Western bloth test, I guess it is supposed to get the immune system to kick in and make antibodies so that the test has a better chance of detecting lyme. I am pretty sure that I am having a herx reaction this past week, my head pain is pretty severe so I can only imagine what it’s going to be like when he adds antibiotics to the mix. He is very confident that I have lyme even without the test results. I have very weird symptoms, in addition to the daily head pain/pressure, I get tingles on my scalp as well as crawling sensations under my scalp. It also seems to have affected my trigeminal nerve/facial nerve as I get teeth pain too. A couple years ago, I also got an MRI that showed scattered white lesions, non MS like lesions, but they didn’t know what it was. From my reading, I see that these are common with Lyme, it’s no wonder I have memory issues and brain fog.

      Hope you continue to do well! And I think your blog is great. I often wonder for the individuals with NDPH who got better with doxycycline if it wasn’t the lyme all along that was causing the head pain.

      • The herx reactions can be so horrible, but the first month was the worst for me. I also have had the tingling (in my face) and the creepy crawling feeling across my back and sometimes in my legs. The tingling symptoms have been the last to get better, as well as the brain fog and memory issues. I feel like just this month it has started to get better.
        Hang in there- this is all a good sign that you are on the right track! I would take baths in epsom salts to ease the pain. It doesn’t help my head, but eases the muscle and joint pain.
        Also, take a look at the Lyme Diet – when I can stick to no sugar / gluten, I do feel better. I struggle with it, to be honest, but anything you can do to heal faster is worth it!

  2. Hi Amy, I’ve been following your blog for a long time and I’m so glad to hear that you’re doing better. I have NDPH and have recently been looking into the possibility of Lyme. May I ask, where was your head pain located and how would you describe the pain?

    • Hi Jess,
      My head pain was originally focused in the front above the eyes, and along the side, but it was more of an “all over” pain much of the time when it first started. My pain was mostly pressure, with stabs occasionally. Over time (after about 6 months) it was mostly in the forehead daily.

      Find out as much as you can about Lyme. There was so much that I didn’t know and I live in Connecticut where it is epidemic. I thought I knew the symptoms and that my doctors would know as well – but they didn’t. If you suspect it is a possibility for you, don’t put off treatment. The sooner you get treated, the better off you will be long term.

      Let me know how it goes – or if you have any more questions. πŸ™‚

    • Jess,
      I can second what Amy says about the pressure. When this nightmare began, the head pressure that I had during that first month was extreme, for me it was a horrible occipital and frontal head pressure, my head felt like it was in a vice and a band was wrapped around my head and being tightened. I had never in my life felt anything so bad and it was relentless. This pressure did subside after a month, just to be replaced with daily head pain 24X7.

      Amy, now that I am being treated, just this past weekend, I got the head pressure again, but at a lower level so I know it must be the herx reaction. I hadn’t felt that head pressure in a long time, kind of hard to explain, it’s a pressure that doesn’t extremely hurt, but when you have for more than 24 hours, I guess you just can’t take it anymore.

  3. Hi Amy,

    What other symptoms did you have besides the constant headache for all those years? I have suffered on and off over the past 13 years but the last 7 years, I was headache free and thought I had it beat until this past June. Since then, my life has been destroyed. I have three children, a wonderful husband and I miss them so much. I have turned into a recluse and am so severely depressed. I have had a constant headache since June. I’ve tried some different preventatives and abortives to no avail. I just saw an LLMD but my only symptom over the past 7 months is this constant headache. I did get the Igenex bloodwork done and go back the end of January for results. However, he did start me today on a trial of doxy. When I go back, I am asking for the singulair as well.
    I don’t know what I’m going to do if this doesn’t work. All I do is cry. How are you doing now? Thank you.

    • Hi Michelle,
      I’m sorry for the delayed response. The only other symptoms I had initially was leg pain and a strange rash that began shortly after the headache. Much of the time it was just the constant headache. Sometimes I really felt fine, aside from the head pain and that is how I got through the day.
      I think you should give the antibiotics a chance to work. It wasn’t an immediate cure for me, but long term it really has changed my daily life.
      I have been on a wide variety over the past year. I began with doxy and didn’t tolerate it very well. Then I was on a high dose of amoxicillan, then zithromax, mepron, penecillin k (i know there were more, i just can’t remember at the moment!).
      I also just started taking cat’s claw about a month ago to boost my immune system, and it seems to be helping. Many, many patients with Lyme choose to go on antidepressants to help them cope with the pain as well as the anxiety, moodiness etc, that is a part of the disease. I choose to myself, because I know that I needed to in order to function calmly as a mom. I know firsthand how having NDPH and chronic lyme can wreak havoc not only on your body but on your marriage and relationships.
      If there is any other way I can be of help, please feel free to contact me.
      I hope you are feeling better today. πŸ™‚

      • Hi Amy,

        Thank you for the response. I will find out my lyme results on Monday. Although, I don’t think this is what I have. How long taking the antibiotics until your head started improving? Have you just taken oral antibiotics? I was on Wellbutrin and it didn’t help me at all, still cried constantly. I am going back to the neurologist Monday and think I am going to ask to try another antidepressant. Thanks again for your help.

        • Michelle,

          We’re curious about your results. My husband’s only symptom for about 7 mos was headaches. Then he started getting dizzy too. He’s being tested by 2 different labs. The first results come back around Jan 30.

          • Well, the results show that I do not currently have lyme but had it before?? I’m confused about this. He suggested we try iv antibiotics in a month after I give the new neuro meds I’m on a try. I’m so depressed.

  4. I am wondering if anyone can give me the name of any good LLMD’s in the Southwest. My husband has been suffering for a year now and we suspect Lyme’s but I’m not too sure about the doctor we are seeing. Thank you.

    • Hi Connie,
      Check this website : http://www.ilads.org/ You should be able to get a referral for a LLMD in you area through them. I would guess that many docs in your area are not lyme literate – I live in CT and a huge portion of docs here seem clueless about the reality of Lyme. I hope that site helps. πŸ™‚

      • Hi Amy,
        Can you tell us more about the herx symptoms? Are they constant? How soon after starting antibiotics did they start? How long did they last for you? Also, have you modified your diet at all? We found and LLMD in Arizona and he strongly suggests a very strict diet to starve the Lyme’s. It’s called the MacDougall diet and is a very strict Vegan, no fat, no animal products diet. He said some people herx from that alone. I’m so glad you’re doing better!

        • Hi Connie – The herx symptoms seem to go in a cycle for me. I’ll have a bad week, then two or three good weeks before it hits again. i’m past this cycle now for the most part. They say that eventually you just start feeling better. Also, I recommend the LYme Diet or at the very least cutting out all sugar and alcohol because they both feed the bacteria. I could feel it the next day if I ate sugar…it isn’t worth it! Eliminating dairy and gluten helps reduce the inflammation in your body, so taking these steps will help you feel better faster, I think. Of course, that would be after the initial shock of living a life without sugar and pasta. πŸ™‚ That was a tough one for me!

          Michelle – The results are saying that you have had lyme, you have been bitten, but there are two major schools of thought as to whether you have Lyme. My daughter had a similar result…only a certain number of “bars” on the test were positive and not enough to prove an infection.
          I would go with your doctors recommendation. It can take a while to start feeling better. I still had many weeks over the past year when I thought my headaches were back and the whole thing was starting over again. I did get some immediate relief from the constant headache with in the first month, but I would think it is different for everyone. I know this is a hard decision to make. Have you seen the documentary “Under our Skin?” It’s definitely worth watching because it explains a great deal about the controversy and difficulty of diagnosing Lyme.

          Good luck to you both and let me know how it goes or if you have any other questions. πŸ™‚

  5. hi, i see you’ve not posted in ages and hope that its a sign of good things. i have had a single, constant headache now for more than 12 years. with the exception of when i manage to sleep, it’s there all the time.

    i recently have started looking for treatment options and was hoping to be in touch. thanks, josh.

  6. My wife has Lyme and has had terrible migraines. She is considering surgery to fix it. There’s a list of doctors who perform this experimental surgery online–List of Migraine Surgery doctors–but we’re not sure this is right for her. Has anyone done this surgery with Lyme before?

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