Herx or Re-infection?


It’s been a little over a year now since my Lyme diagnosis…

…and I am still sick.

This past week has been awful.  It started on Monday when I was in my yoga class.  My legs started to shake and felt too weak to move.  I quietly left early and walked home, thinking that maybe I needed some rest.  That night, my legs felt even weaker and I felt completely exhausted and confused.  I took my antibiotics after dinner and  soon after I found it very hard to breath and slowly all of the horrible symptoms I felt a year ago showed up.  First the air hunger, then the buzzing sensation in my head and all throughout my body, my neck started to hurt and felt really stiff, the feeling of ants crawling through my body and up my neck returned, the muscle spasms returned and the worst feeling of panic came over me and kept me from being able to fall asleep.  I was on the Biaxin and Plaquinil, along with the Doxycycline for two weeks and wondered if this was a really bad herx reaction or re-infection or an allergic reaction to the new antibiotics.  I was also on the Biaxin and Plaquinil in the beginning of my treatment and never felt like I was getting better until I switched to Doxycycline and then IV Rocephin.  I then switched to Doxycycline and Cefdinir and felt even better.  Why the sudden decline???

On Tuesday morning, I felt worse and decided to stop taking the Biaxin and Plaquinil and stay on the Doxycycline and my doctor ordered a new prescription of Zithromax (which I have not taken yet).

It is now Friday and all I can think about is how am I ever going to get better and will I ever get rid of this?  Rylan got mad at me today because I couldn’t run with him to soccer this week, as we always do.  Each step this week has been exhausting and I feel like I’m out of breath.  I can no longer stand up without feeling so dizzy that I’m about to pass out.  What is happening to me?  I’m back to feeling scared and worried about my children living without their mother and whether or not my husband will be able to tolerate another month of me being very sick again.  I’ve tried to explain to a few of my friends about how I feel but I just don’t think anyone understands what this feels like.  I know that I looked perfectly healthy, carting the kids around all week, but I honestly feel like I am walking around in a 90 year old women’s body. I have told a few people how I felt but I couldn’t possibly list all of the symptoms that I have without sounding like a complete nut!

Here are my list of symptoms:

Air Hunger  – Scary.  I hate this feeling.
Heart Palpitations  – Also scary.  My heart actually skips and slows down and speeds up throughout the day.
Muscle Spasms
Swollen Lymph Nodes
Extreme Anxiety and Panic Attacks – Even the Lorazepam is not working.
Pressure Headaches – Feels like my brain is swollen and pulsing inside my head.  Sorry for the weird description, but it is the worst feeling!
Brain Fog – I walk around feeling confused, out of it, slow, lost
Dizziness/Faint
Fatigue (I am physically exhausted all day) and quickly out of breath after a few steps
Buzzing sensations throughout my body
I can feel drilling in my tissues and muscles – I know, weird.
Stiff Neck
Flu – Like Symptoms – Achy, chills, no fever
Stomach Ache
Weakness in my limbs
Constant feeling of swaying back and forth
Hearing loss that comes and goes

I am back where I started and this is very depressing and frightening for me.  I don’t want to feel this way anymore.  I thought I had suffered and was done with the worst part of my recovery.  I really hope this will go way soon.  I honestly do not have it in me to go through this battle again.  August, September, October and November of 2011 were the worst months for me.  I was so sick then and can remember crying and begging for all of it to go away.

I’m really going to try to be positive and get through this.  I’m so thankful for my LLNP who is located just 20 minutes from my home…and for my family.  I just wish I could be healthy for them.

xo,

B

 

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21 thoughts on “Herx or Re-infection?

  1. Hang in there. For me the symptoms flared on and off then left. The nuero symptoms did a big last stand. It was almost like the bugs were trying to get some last ditch jab in. You are doing everything right so try and comfort yourself knowing that you are doing everything you can. Thats what I told myself when my symptoms flared. It is important to not worry.
    I read an article about microbial endocrinology. It talked about how our stress actually revs up our immune systems but also the bugs pick up on the heightened immune response and the bugs in turn “rev up”. I don’t know if there is anything to it but I do know that when I calmed down i felt stronger to heal.
    As always great post! Thank you fro everything you do. Tina

  2. Wonder if something during this. Time of year causes flair ups…..I know that sounds weird, but what are the odds that the same horrible months you has last year, are when this is happening again….hope you feel better soon!

  3. Hi, I’ve been following your blog for a while now and have been meaning to write you forever because I feel your pain. I don’t know you but I feel like I do because I completely understand how you are feeling and what you are experiencing! I can’t even figure out how to tell you this? The words escape me – All of your symptoms, I have had and sometimes, still have. The feelings associated with it I have had and sometimes still have. Talking to your friends and feeling like they really just don’t get it and never will… I understand. I understand completely. I don’t know many people with Lyme and sometimes I feel quite alone. Thank you for being real in your posts. I hate that you are going through this but also feel good that someone out there understands… especially about the panic and anxiety part and the weird symptoms. I don’t even know how to describe them sometimes… they are just awful. I had some today. a couple of weeks ago I was feeling great – so much better and then suddenly I got a little teeny cold and I felt soooooo sick again. I haven’t been able to recover yet. Today seemed to be worse than normal. I never know what to blame it on – my new probiotics?…something I ate? I felt so strange at “nap” time. I have to lay down everyday or I don’t survive the rest of it. Having three kids makes that hard but it’s had to be part of our life now that i’ve been sick for so long…. Before I went to lay down, my head was doing that swaying feeling thing… My whole body was feeling weird like it could stop working very soon. My breathing started to suck….not sure how to explain that one. and I get this hyperactivity feeling inside though I’m completely exhausted. It leaves me in a living hell because I can’t get up and move (too tired) and I can’t lay down either (to gittery!) I didn’t mean to make this so long. I could go on forever. I’d love to talk more but for now keep holding on to hope. I’ll pray for you when I pray for our healing of Lyme. A

    • Oh, Alicia…thank you for your email and for sharing your story. I’m so happy you wrote. We all need to stick together and get through this. :-). I also have that hyperactivity thing that happens and it is impossible to fall asleep even though I’m exhausted!

      Thanks again for your note.

      Brandi

  4. Have you detoxed? I highly recommend a coffee enema. They help so much with my neuro symptoms. You just started a new protocol. Maybe this is a herx. Don’t lose hope. You are so strong. You have given me strength. You will find your way out of this. Detoxing is so important. Have you been drinking your green drinks? Hang in there. My prayers are with you. Megan….just diagnosed this past June after 15 yrs of trying to figure it out.

  5. I know exactly what you’re describing. Treatment is so difficult. I did antibiotic treatment for about 14 months straight. I may have already told you that. I was definitely sicker throughout treatment then I ever was or have been since. Not only is it hell physically, it also caused a lot of depressive symptoms for me. I’m sorry you are dealing with it. Listen to your body in every way, and back off meds when you need to, at least that’s my opinion. Like I’ve mentioned before, there are lots of great herbal treatments you can add as well. I love Vitacost.com for all my supplement needs. Hang in there and just remember you will feel better soon:)

  6. I too am a chronic lymie. I got your name from Katrina Makris. I haven’t had a chance yet to write to you, but I have been reading your posts. I was diagnosed in 1998 after 5 years un/misdiagnosed. I ended up bedridden with severe neuro symptoms, anxiety being one of the worst parts of the whole thing. I did get 100% better on Biaxin. But it took me almost 3 years. The first year on meds I got even worse (if that was possible). The second year I started to get slowly better. And the last year I finally recovered and got my “normal” life back.

    Well I stayed well for 3+ years on my own before I relapsed. I was off and on abx but they just weren’t working for me anymore…and I really didn’t want to be back on them long term again. I found out I was pregnant and had my daughter (4 1/2 years old). I never went back on treatment but have delt with lyme symptoms off and on ever since. We decided we wanted another baby and I know also have a 6 month old little girl. Well after her birth I was doing great up until about 2 months ago when I noticed my symptoms returning stronger. I always had bad days and good days and a general just not so well feeling most days, but for the past few weeks I have really taken a turn for the worst. Usually following just a 20 minute walk I would herx for up to 3 days. It would pass and I would be ok again. This time around my herx or just flare up of symptoms is so strong it is making it really hard to take care of my two girls. Especially having a new baby it is hard to take find the time to take care of yourself. The last couple of days have been the worst herx yet. I too have major lyme anxiety/panic…a different kind of anxiety altogether. I get heart racing/palps. Dizziness. Feeling like I could die at any moment and scared that my kids will lose their mom. I get the swaying feeling too and headaches like no other. Right now my vision is blurry and the brain fog and extreme tiredness is just too much. I have to tell my daughter that mommy has a little cold because she doesn’t understand why I am always tired or always sick and can’t go out and do all the things I want to do with her. It sure doesn’t make it any easier.

    I see Dr. D who used to be in Boston. I would love to know who you see that is local to you. I live in North Andover, MA and am looking to find a lyme literate doctor closer to me as Dr. D only works out of Falmouth now. I have also had a consultation with a local herbologist who has had great success with lyme patients and getting them symptom free in under 2 years. As a nursing mom, I was looking for alternative treatment. I know Biaxin worked for me in the past, but hoping these new herbs will work just as well.

    If you have a free minute I would love to speak with you.

    Take Care,
    Jessica

  7. Brandi, I am so sorry that you are not doing well. I’ve been doing poorly this month as well. I feel that it’s the nature of this Lyme beast. Just when we think we have a handle on things, we feel so much sicker again. I totally understand how you feel about how others see you. From the outside we look healthy but we feel like we’re dying inside. It’s even harder as we try to keep up with our little ones. Friends really can’t understand how horrible it truly is. Thank you for sharing your story with us. Us lymies need to lean on each other. You are in my prayers. Xoxo Regina

    • Regina,

      Thank you! I’m sorry you have not been feeling well and hope that this passes soon. Your support means so much and yes, we all need to lean on each other. :-)

      I’m praying for all of you! My spell-check turned praying into partying before I changed it back. I’ll do that too, once I’m better!

      Xo,
      Brandi

  8. Hi Brandi- and everyone that has responded. I am new here but follow the posts when I can. I have chronic Lyme &co’s. My two kids have Lyme and mycoplasma. Brandi I am so sorry for what you’re going through.
    I totally understand everything you have all posted. My symptoms are similar and have been worse this month too. Unbearable at times. I prayed last night and literally opened my heart and soul up like never before- I did not ask to be cured or healed. But I asked for the strength and power to heal myself from the inside so that I could be a better mother and support to my husband and children.
    I often pray for all people with lyme- I believe strongly that we will all get better in time, and that we are some of the strongest people.. It’s important to try and not overdo it. I think this triggers relapses for some. With love, support and hope (and of course the meds/herbs) we will get better.. Hope is THE most important part. Don’t give up, even when you think you can’t go on. Fight through it and keep going, whatever it takes. These diseases take many things from our lives. But we cant let them take our spirit. Lately because my symptoms have been so bad, and yes, similar to last year when I first was diagnosed, I have tried to just accept what is, in the moment. I also use ever so soft music when I can to calm down.
    Sending love, light and healing to you all. May we get some relief soon.
    Love,
    Rebekkah

    • Rebekkah,

      Thank you for your positive message and prayers! I went to sleep with some calming music from the “soundscapes” channel of my TV last night. Music can be so therapeutic at times.

      I will pray for all of you tonight. Thank you all so much for your comments!

      Brandi

  9. Hi Brandi and Everyone,

    My mom last night said something to me, as I was also explaining to her about my symptoms and how I feel. She said that this disease will make you stronger in than end, more stronger than you ever imagined. Although we do go through lots of ups and downs, WE WILL be much stronger because of this.

    Stay strong Brandi, you will get through this, we all will.

    -Romina

  10. Brandi –

    I just wanted you to know that I believe that this horrible/beautiful blue moon has really fired up all the lttle critters everywhere. As I type my woodsy backyard is almost deafening with the roar of noctural insect and herpetic activity. I believe, as others have said, that you are flaring/herxing because you are taking the fight to them. I also have felt horrible this week and began to worry until I remembered about de-toxing. I have been on Amoxicillin and Malarone (LD and suspected Babs) for three weeks and then WHAMO this week. I have all the symptoms you’ve described plus hypercusis and back disk pain. The head pressure/headaches was the most worrisome symptom but I started to feel better after two epsom salt baths, my first coffee enema in a long time and some infrared suana time. Remember that inflammation is the typical cause of the symptoms and that the body’s inability to quickly eliminate the die-off toxins will cause inflammation. Bottom line is that symptoms/herxing means that your treatment regime is working. It was unclear to me whether you said that you did, or did not, change/start your meds recently before these more severe symptoms began. Whether you did or not, I think that this is going to turn out to have been a pretty bad week for a lot of people. No worries B, just keep after these buggers and you’ll be back to your old self in short order. Just plot each night on how badly you are going to ruin their day when you wake ; ) – Stevie

  11. Thank you, Stevie! I am finally feeling better. It looks like a lot of us were really sick this past week. I need make time to Detox more often though! It’s not something I have been very good at and I know how important it is. I hope that you are feeling better this week!

    Brandi

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