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  • How's your herx?

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    Old 03-06-2005, 03:38 PM   #1
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    How's your herx?

    Hi! This is my first time on this board. I had a tick bite 5 yrs ago with all the accompanying symptoms and was diagnosed with mono (cfids, lupus?, RA,ect) and so the story went for 5 years. A new dr retested me for Lyme and Western Blot was positive, so much so that the Pa Dept of Health called me one day for all the details.

    I have recently started with a LLMD and had a Bowen test which was 1:128. I have been on 400mg doxy since 2/11 and the reason for my writing right now is wondering if anyone has experienced what I have.

    My main problem is extreme dizzyness, lightheadedness, and so bad weakness that sometimes I can hardly walk at all. I also am running a low grade temp. I am feeling so bad because we have dairy farm and I can't do anything anymore!! My LLMD said that I am to do nothing for awhile, at all. Has anyone experienced this?? Oh, also my eyes are so sensitive I have to wear sunglasses all the time- How long does this last?

    Last edited by pinetree3; 03-06-2005 at 03:40 PM.

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    Old 03-06-2005, 04:47 PM   #2
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    Re: How's your herx?

    Dear pinetree3,

    Love your name! Welcome to the boards. You have come to the right place. I feel good knowing you have started to see an llmd. Hopefully you will start to get the help we were unable to get for so long. To answer your question in a word "YES".

    You can look at just about anybody's story on here and you will see your reflection. I too am suffering with the leg problem. Not everybody here has that problem but it has really incapacitated me for a few years. I finally went on meds for lyme after a 4 year ordeal of being told I had MS. So much wasted time and years of my life. Also fatigue and major equilibrium problems, stiff and numb hands. You name it.

    I go to the grocery store only with my husband and am so afraid I won't make it to the car when I am done. I was on an IV until it messed up my liver enzymes and after a three week break to straighten that out I am now on orals. Not as much progress so far but I am at least being pro-active in battling this life changing disease. I hope for a full recovery but know it will take time. Sit back and enjoy the ride as best you can. It will be long but not hopeless.

    Feel free to ask any and all questions. Unlike at most doctor's offices we will give answers and not tell you that you are crazy. Good luck in your quest for a full recovery and I'm sure Ticker will respond with some important info for you.


    Old 03-07-2005, 05:09 AM   #3
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    Re: How's your herx?

    Hi Pinetree3 - Sorry you are sick but glad you are getting treatment. My first herx on the doxy was awful...I had all your symptoms and more during the herx...I had such vertigo I couldn't drive and felt disassociated from the world which I had never felt before taking abx. I actually ended up in the ER because I woke up one morning and felt like I was having a heart attack...also I had parathesis in my right arm and couldn't feel it. The first herx was the worse - I had sciatica pain and joint pain that would keep me awake and horrible anxiety and insomnia. Each herx has gotten a little better but sometimes different with symptoms.

    Hang in there and try to take it easy that is what your body needs to heal write now. Drink lots of good quality water and try to detox your body whenever possible. Some of us here take warm to hot baths with sea salts or epsom salt (1 Cup) and 2 bottles of hydrogen peroxide to a bath tub full of water and we soak for twenty minutes...this seems to help detox the body.

    Keep us posted and hope you feel better soon.

    Old 03-07-2005, 11:25 AM   #4
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    Re: How's your herx?

    I've herx'ed once so far, and I'm not looking forward to a repeat performance. I was crippled for several days. It started at 3am, about 3 weeks after starting amoxycillin. I awoke in such pain that there were tears streaming down my face. I kept trying to go back to sleep, but the dreams were odd, and when I was awake I was hallucinating and having strange thoughts. In the morning, I couldn't even lift my head off the pillow. My neck was stiff. I couldn't move it side to side. I was intensely bothered by light. I couldn't get comfortable laying down. I ended up spending almost a week crippled up in a recliner, surrounded by pillows with joint and muscle pain. I became severely suicidal, and felt as if I was going insane. I was dillusional, and moody. I had pins and needles sensation in my arms and legs, and muscle spasms in my thighs and upper arms. I felt completely disconnected from my life before herx'ing. It was like my life before was a distant dream. I could not remember anything. A commercial would come on, and I couldn't remember what television show was on.

    Herx is hell.

    Old 03-07-2005, 04:39 PM   #5
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    Re: How's your herx?

    Hi pinetree, welcome to the board!

    Have you been tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa? This is important because many people who have Lyme are co-infected. It will affect treatment choice and progress.

    Getting treated for Lyme can be difficult and it normal to feel worse before feeling better. Many people who have Lyme experience the Jarisch-Herxheimer Reaction (herx). Often when people with Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary but it is a good sign the antibiotics are working. Herxes vary individually, but some people experience them shortly after starting treatment and/or every three to four weeks.

    It is a good idea to keep track of your symptoms. One way to do this is to write down the three main symptoms of each day with a numerical rating of their severity from 1-10. Over time when you review this, you can pinpoint when you have herxes and how you are responding to the meds.

    Make sure you read the pharmacy print-out for the Doxy. Do not have dairy, iron or magnesium products two hours before or after the Doxy. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. If it makes you nauseous, eat something substantial and non-dairy before taking it. Do not lay down for at least an hour after taking it or you can ulcerate your eshophagus. This is very painful!

    Whenever you are on any antibiotic, make sure you take high quality acidophilus capsules. The best ones to get are refrigerated. You can get them at most health food stores. They replace the good bacteria in the body and help to prevent yeast overgrowth. Wait two hours before or after taking the Doxy to take the acidophilus or the Doxy will not be absorbed properly. It is a lot to remember but you will get the hang of it!

    I know it is frustrating to be limited in your activities, but you need to help your body eradicate this infection. Hang in there okay?

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