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Sudden Lyme Regression After Months of Treatment

Posted , 7 users are following.

Jessekf
Jessekf

Hello,

I am sorry this is a bit of a story, but I have no where else to turn.

Background

I am a 34 year old male, healthy(Other than Lyme) and active. 6 months ago I was diagnosed in both the USA and Germany as having Lyme. I started antibiotic treatments, rotating in/out different antibiotics, often taking 2 at once. Amoxicillin, Azithromycin, Doxycyclin, Minocycline, and Rifampin are the ones I can remember. In addition, I started taking Serrapeptace, Samento, Chlorella, CBD oil(No THC), and vitamins. I was doing great. Working lots, lightly hitting the gym again and I was probably symptom free 4-5 days a week, with minor symptoms other days. 

The Hike

A couple friends and I went on a fairly easy, but long hike. about 9km in, one of my friends fell and hurt his leg so we basically had to carry him back to the vehicle. It was absolutely exhausting, we were all sweaty, dehydrated messes, but that night I felt ok. The next day was a disaster. I was more Lymey than I had been in 6 months. 2 days later I went to my doctor and she took me off Rifampin, kept me on Minocycline, and put me on Cephalexin. My world crashed. Every day around noon, I felt EXTREMELY Lymey, Herx'y and basically I felt waisted drunk, with an extremely sore neck. It was as sick as I can ever explain and was basically bed ridden for 4 days. I called my doctor and she immediately took me off Cephalexin. I started to feel a little bit better and we decided it would be a good time to try IV Ceftriaxone. The plan was to do 6-8 weeks worth of IV, 3 days in a row each week. After three days of the IV, each day I started to feel worse. By day 3 I was quite lymey again. Its been 4 days since I had my last IV and I have more Neurological issues than I can handle. I was supposed to start taking Tinidazole on my no-injection days, but my doctor told me to hold off until we figure this out.

Todays Status(13 days after the Hike)

I took Minocycline, CBD(No THC), Zeolite, Chlorella, and vitamins. I feel like my brain is too big for my skull. Constant headache, dizzy, sleepy, nauseous, brain fog, sensitive to sound/light and sore neck.

What happened to make me regress so badly and what can I do? I am starting to panic. What could the hike have done to regress my progress like this? I am open to any suggestions because I cant go on like this.

0 likes, 7 replies

7 Replies

  • lorna86104
    lorna86104 Jessekf

    Posted

    Hi J, I'm not as far down your road to be of any help with advice. Maybe it was a case of you overexerted yourself at that particular time whilst taking the meds. You didn't happen to pick up another tick carrying your friend ? I was out running in the hills yesterday and had a woozy moment when nearly finished. My feet were sending me sideways but it didn't last long. Was just over 10mls and i only ate 1 sweet so i don't know what caused it. My head also feels like yours at times. I get my NHS results back on 3rd Dec from having neg ones previously and pos ones from Germany. Just had a friend drop by too who fishes a lot. He was asking me aboit my symproms and he seems worse than me and quite frightened. He said nobody sprays chemicals anymore and these insects are rife because of it. Medics are going to have an epidemic on their hands so something has to be done.
  • caroline91964
    caroline91964 Jessekf

    Posted

    Hi there,

    I'm sorry you've had a set back in your recovery.

    I'm no expert, but here's my take on it. When I was diagnosed with Lyme Disease last year, I felt at rock bottom, health wise. Normally, I'm a fit, healthy person and rarely get sick. 

    I was put on Doxycycline and slowly, very slowly, I began the road to recovery. I ate healthily and research online the kind of food that can support LD suffererers' recovery. I also read that you shouldn't expect to be fully recovered for many months.

    With this in mind, I paced myself.

    Could it be that you may have pushed yourself too hard physically? Helping your friend was unavoidable, but it may have pushed your body too far, too fast.

    I'm exercising gently and my body seems to prefer that at the moment and it's been over a year since I had LD.

    It's a frustrating fact that everyone seems to recover differently at at a different pace. If you were diagnosed late, then you may take a longer time to recover.

    My own personal experience is that Lyme Disease has left me with poorer memory and less ability to focus on tasks that require concentration. As a journalist, this has had an effect on the way I write. Before LD, I could write non-stop for hours without a break. Now I need to stop after 20 or 30 minutes, take a tea or coffee break and then return to the job. 

    You may have to  make some alterations to the way you live. Either short term or for the long term.

    The most important thing is that you listen to your body's needs. You seem to have medical professionals on board and helping in your recovery and that's a great thing.

    Keep communcating with your doctor, but also get informed yourself and try to work with the medication that you're taking, but don't rely on it as the only route to recovery.

    This is just an opinion and I am in no way a qualified medical professional.

    Good luck on your road to recovery and take heart, we have all been where you are now and you will come through.

  • kerry33557
    kerry33557 Jessekf

    Posted

    I'm so sorry to hear of your disappointing regression. I am new to the whole topic, but have 2 children diagnosed thus far, and awaiting results for the rest of us. As we all are, trying to read and digest as much as I can while maintaining sanity. I have a theory/question which some of you may be able to add to or clarify. I've read and been told by Dr. and advisor that Bb hides in synovial fluid, organs, adhesions (scar tissue?)-- anywhere that would be difficult for abx to reach. I have noticed with my son that excercise induces immediate fatigue and a belligerency in behavior that was previously uncharacteristic. I have recently read that this is the release from these hiding places of the Bb, and though helpful, is undesirable in its effects. Wondering if your extreme exertion in effort to help your friend came with a huge release of Bb and subsequent herx? If so, I hope it leads to an eventual improvement.
  • sky23
    sky23 Jessekf

    Posted

    Hi..for what it is worth look up parkinsonism..this can be caused by certain drugs,,I figure lyme disease can make us very sensitive to anything...There is a list of some of the drugs that cause a reaction..it should be a temporary thing if it is this..there is also another one as well caused by a drug reaction but I cannot remember the name..I had a reaction to something within 6 hours of taking it..and I figure it is the underlying bacteria..
    • sky23
      sky23

      Posted

      The other reaction I am thinking of begins with rhab..again this is probably wothless but it may be something we should be aware of when accepting treatment.
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