posted
I haven't been on antibiotics since November 06. My doctor was "put out of business" temporarily and I just didn't have the strength to try to find another out of state doctor to help me.
Starting this past Monday, I am on 200mg dox twice a day and 500 mg Zithromax twice a day. First day didn't count, I couldn't keep anything down. But after 5 days, is it possible I am herxing? Terrible nerve pain, tired (of course) stabbing pains in my eyes. Insomnia way worse, I think that is just because the pain keeps waking me up. Just generally feel terrible. Of course this is Saturday so I can't call.
Everything is worse at night but now it is getting really bad during the day.
If I know this is normal I can suck it up and deal with it. I have so much to do around the house and to take care of my horses. If someone is out there? I have ignored my Lyme for so long. In January my local primary care (who is sympathetic but not a LLMD) told me that I was seriously relapsing and that I needed to start addressing it either with some kind of holistic protocol or find a LLMD to start antibiotics again. I literally told her that there is not Lyme Disease in our state. Hadn't she heard? I do not have Lyme Disease. She allowed me to have my little fit. And then said that we both know that is not true and I need to take care of myself. So now I am doing it and I feel worse. Didn't think I would herx so soon. Is it all in my head?
Will appreciate any responses, can't talk to anyone about this, no one understands... Thanks....
Posts: 49 | From Florida | Registered: Dec 2003
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It sounds like a herx.
I hope you do go see an LLMD for proper treatment. I am glad your doctor is so Lyme aware.
Hang in there! Day 4 is my usual day for a new med herx to start.
If you post this under medical questions, you will get more responses. General support gets about 1/5 the traffic of Medical questions.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Wow!
Sounds like a good herx to me. Congratulations to you.
If it hurts bad, then you are on to something, sorry to say. Lyme treatment is very uncomfortable.
From my experience it is really worth it to hit it hard, and keep hitting it hard until it is over. Going easy just gives the bugs a chance to hide and adapt.
Stick with what makes you feel lousy, and then when you start to feel better, add something else, until nothing will make you herx. We will all understand if you want to complain.
I'm sorry it hurts so much, but I have been there, and I'm over it now. You'll get there too, and then you'll feel better than you have felt in a very long time.
Learn whatever you can about detoxing and lymph drainage, and get some gentle body work to keep the toxins clearing out of your system.
See if you can get some help with the horses for several months. Perhaps you can do some kind of partial lease so a good person can exercise and care for your horses for a while. Lyme treatment is not quick and easy, but you will get there.
Tell people you have antibiotic resistant systemic borrelia from a tick bite. If you have neurological symptoms, then tell people you have borrelia meningitis.
That's the technical name, and sounds more impressive than lyme disease. People think they already know that Lyme is just a short case of the flu.
I know what you mean about the denial. I asked the doctor to test me for something I might actually have, when I had all the symptoms, and I'm from southern Connecticut.
Go ahead and throw a tantrum if you want. None of this is fair in any way. Hang in there.
Ask questions on the medical board to make sure your doctor is giving you good combinations until you can find another LLMD. There is so much good help here on lymenet.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bettyg
Unregistered
posted
caprice,
so sorry you are experiencing this major herx! don't think we have talked before since you've been here 5 yrs. and only 26 posts!!
i don't know if this would help or not; but i'm going to treat you like a newbie just joining and offering you this.......
take care, and hurting .... the spirochete ARE BEING KILLED OFF!!!! that's what we all want!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. 
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