My name is Brittany. My mom had Lyme Disease as well as Babesia, and when I was in her womb, she passed both diseases onto me.
19 years later, i've begun treatment officially. I'm currently on zithromax (250 mg x 2,) malarone (switched to hydroxychloroquine at 200 mg x 2,) B-12 shots for energy each day, nystatin and fluconazole for yeast.
I'm on supplements including acidophilus, coenzyme Q10, pro-gest-aide, and saint johns wort.
I've been on treatment for 7 days, and soon i'll begin to herx. I'm sort of alone, taking care of myself through all of this, and I was wondering just what to expect. I was young when my mother, Gayla, went on treatment for Lyme, so I don't remember what happened. She died last year of cancer, so I can't ask.
Please, fill me in on what's to come...
Thank you so much,
Britt
[ 09. July 2008, 01:31 PM: Message edited by: Britt ]
Posts: 4 | From Beverly Hills, MI | Registered: Jul 2008
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daise
Unregistered
posted
Hello Brittany,
W e l c o m e !
There are a lot of people who've had Lyme since they were very young--or they were born with it.
You are not alone. You've got company!
You've started treatment and you're wondering about a herx. Well ... a herx is when all your signs and symptoms get worse. It's thought to be caused when antibiotics kill-off Lyme germs and release neurotoxins and biotoxins.
Look at it this way: You've (maybe) waited your whole life to have a herx, and you hadn't realized it. A herx means your antibiotic program is working.
Some of us herx regularly, some don't seem to have a pattern to it, some herx continually for quite a long time and some of us never do.
We're all different, as to our needs. Yet, we're all Lymies of Lymeland!
I'm very sorry you have lost your Mom when you are young. She got treatment, apparently years and years back. We'd all feel for her and what she must have gone through, many years ago. Lyme treatment has improved. It's not perfect.
More is known about patient response to treatment and about coinfections--other tick-borne illnesses (TBI's,) which are common, along with Lyme. Seems most of us here with chronic Lyme have another or other TBI's.
How's your head? Do you feel foggy? Is it hard to read and then to comprehend? For starters, that seems universal, with we Lymies. I'm sorry you have to deal with Lyme. You must have a bevy of signs and symptoms to deal with.
Do you have an LLMD (Lyme-literate MD) to help guide you? When did your signs and symptoms start? You said that you are alone--do you have anyone you can relate to, about Lyme?
At the top of this page, on the left, leafy menu, you can click "Support Groups" and find one in your area. If you haven't done this already, I suggest it, just to have someone local or fairly local you can email.
They may help with finding--whatever. Maybe housing, maybe a specialist MD if you should need one. An LLMD, for sure! Maybe they know of someone in your neighborhood who also has Lyme.
Are you working? I know--what is this, twenty questions? I'm an old bag and you're young and so, I'm concerned about you!
Do you have relatives locally?
Have you been to www.ilads.org --on the left menu please find "Treatment Guidelines" and click. That brings you to Dr. B's guidelines for 2005.
You'll find a lot of great stuff in there. It was hard for me to absorb all of that, having chronic Lyme, but the information helped me a lot to understand. It also points to physical therapy and gym.
BettyG will come along and offer you a free newbie package that she'll email. This is searchable, when put on your computer.
You can use "search" near the top of any page for any subject, or of course, post questions on the board.
my heartfelt sympathies on losing your mom last year!! later when you get my newbie package, i have an area there on SYMPATHY POEM LINK and 5-6 are MOM'S poems..........
KEEP A SYMPTOM LOG ... WHEN THINGS START AND STOP! in my newbie package are 1-2 of them there IF you chose to go that way.
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. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ***************
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daise
Unregistered
posted
Also, you asked what to expect. Treatment for chronic Lyme, plus you have babesia (babs) takes time--years. 1-3 years? More?
Again, everyone is different. YOu're tending to your GI tract, by taking care of the yeast--that's great.
Again, herxes are when everything gets worse. That brings new meaning to "you gotta roll with the punches!" If it's just too harsh--you can't take it, then bring it up with your LLMD.
People are here at just about all hours, so feel free to post any time.
Have you noticced that there are other forums here, besides this Medical Forum? (Go near the top of any page and click "forum home."
I like herexes. I know, I'm weird. But I had to fight for treatment and I treasure it! A herx means Lyme and TBI's are being got rid of--then after the herx settles, I'd feel a bit better.
The juice of lemons in water helps a herx so you feel better. Also, if you can afford it, taking a hot bath with epsom salts and baking soda can help.
Being able to sleep helps immensely, in every way--it helps herxes and muscle pain, and the head stuff. DO you have trouble sleeping?
Exercise helped my herxes. That's a whole catagory all its own! Please stay awa y from aerobic activity, as that consumes your energy, and you need that to help your body fight Lyme.
It depends on what shape you're in with Lyme, now!
"They say" that when you're young, you get hit hard with Lyme, yet young people seem to recover better!
posted
hello, brittany! only have a minute here, but wanted to share w/you that i have had no real herxes. definitely times where i am more tired and worsening of symptoms, but nothing like what i read other people experience. i am 30 years old and, like you, have congenital lyme, along w/my 3 sisters. although, my mother was never diagnosed w/lyme, we are certain she had it. she passed away though several years ago from MS, so our situations are similar.
just stay positive! you may not have a terrible time w/the treatment. mine has been great overall, and i am really feeling so much better after 5 months. hope you are, too:)
Posts: 31 | From maryland | Registered: Oct 2007
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Are you still on Malarone? If so, you can't take CoQ10 with Malarone.
The first herx is no picnic, but it's mostly a worsening of symptoms. I felt better when I started meds, then felt slightly worse than I did before I started treatment during my first herx.
Hang in there, it's tough. I'm sorry you don't have you mom to help you through this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I only took 3 days of malarone, then switched to hydroxychloroquine. I did take coq10 with malarone. Why can't I take them at the same time? Should I take another dose of malarone again?
Thanks!
Britt
Posts: 4 | From Beverly Hills, MI | Registered: Jul 2008
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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. ![[Frown]](frown.gif)
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