posted
my daughter is sick with lyme disease. we live in the uk. she has recently been diagnosed by an llmd here in uk. she is currently on iv rocephin almost completed three months. she has almost completed babesia meds, but she will soon be strating bartonella treatment and oral anti b for lyme too. she has not improved at all. she still suffers severe head pain she is on morphine based pain killers, she still has terrible vertigo etc plus other symptoms. could it be the head aches and vertigo and vomiting be due to the bartonella, or could she be one that never recovers, i am so very worried she is only 13. please advise. i forgot to add she can not walk is bedridden and crawls to bathroom. when will we see improvements or should we have done by now...
dominique
Posts: 1 | From united kingdom | Registered: Jul 2008
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posted
I am so sorry to hear that your daughter is still doing so poorly. That is certainly an indication of another co-infection, bartonella sounds like the most likely candidate. Bart can cause gastric and neurological symptoms as well as the usual fatigue, pain, etc. Also, check the lymph nodes for enlargement.
There is some great information in the "Newbies" thread at the top of the list. I still go back to it, even though I am an old-timer now! I hope that you will get more information from others on this thread. My daughter is still quite sick, and we are pretty sure that bartonella is the main cause. So I will be watching for new info here, myself!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I wonder if you might be able to get over to Germany?
there are about 2,000 lyme (and other tick-borne disease) patients who have been helped tremendously by a new method.
The Bionic 880 and Dr. W's treatment. It takes 2 treatments a week for a month. More details in this thread:
==========================
Topic: Where did the "Successful Infra Red Treatment" thread by Gigi go?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Dominique,
I am sorry about your daughter. Treatment can take time and progress can be slow, but it sounds like she has a good doctor.
There just is not "timeline" to wellness...everyone is different.
Even on IV it can take some time.
Many recover, stay hopeful and be thankful you have an LLMD that has put her on IV and working on her behalf to get her well.
She will improve - keep a daily diary, this is important as symptoms disappear we have a tendency to forget about them. Over time you will see the progress.
posted
Some feel sicker while on abx and when off for a while seem to come back into balance.
Also some abx just dont work well for some people. Often LLMD's use different combination's to best tackle lyme, even though IV Rochephin is held out to be the big gun. Not all have benefited from Rochephin, and have gone on to get better with other treatments.
Take care
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Is her physician willing to consult with Dr. J here in CT? He is the best of the best.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Alv
Unregistered
posted
Gy track and vomiting and vertigo are contribute of bart....check the book
posted
My daughter has been ill for a long time and has a headache,nausea, vertigo,etc. also.
She was never diagnosed with bart, but I thought she had it. We are almost through with a homeopathic bart remedy that Bejoy recommended and it has been very helpful. I hate to jinx it, but it seems to work better than alot of the other treatments we have tried.
She does herx, but they have been easier herxes. I know that sounds odd, but I can't really describe it. This is the first time we have tried homeopathy and I still don't understand it.
The doctor who ordered it for us--he is not our lyme doctor, but treats her for something else--thinks she may have to do another round, but I am going to ask about trying the lyme and babs remedy by this company. The company is Deseret Biologicals and a professional has to order it. Our doctor charged us $50 for it. It is a box of 10 vials and she takes a vial every 3 days.
The other thing I would suggest is to have her vitamin D levels checked. My daughter's levels were so low, there was no way she was going to get better until we started working on that.
Posts: 177 | From God's Grace | Registered: Apr 2007
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bettyg
Unregistered
posted
quote:Originally posted by domzig:
my daughter is sick with lyme disease. we live in the uk.
she has recently been diagnosed by an llmd here in uk.
she is currently on iv rocephin almost completed three months.
she has almost completed babesia meds, but she will soon be strating bartonella treatment and oral anti b for lyme too.
she has not improved at all.
she still suffers severe head pain she is on morphine based pain killers, she still has terrible vertigo etc plus other symptoms.
could it be the head aches and vertigo and vomiting be due to the bartonella, or could she be one that never recovers,
i am so very worried she is only 13. please advise.
i forgot to add she can not walk, is bedridden and crawls to bathroom.
when will we see improvements or should we have done by now... dominique
welcome to the board; so glad you found us!!
i will send you a private message with dr. j's info for conn; our no. 1 kids llmd in usa !! look in my profile for it!! or left side under hello ****************
in the future, please break up your text into short paragraphs for us neuro lymies to be able to comprehend and read; we thank you for we will scroll on by, SOB.
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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Europe support groups on left side bar under Support groups...here is contact info.!!!
Contact Person for this Group: Stephanie Woodcock (Chair) Contact Person Telephone: Contact Person E-Mail: [email protected]
There is a conference coming up very soon!! July 18th. I don't know if you could get to it or not. Excellent speakers are coming. Gill Reese also from Eurolyme would be an excellent resource for you!!
Name of Support Group: EuroLyme Contact Person for this Group: Gill Reese Contact Person Telephone: Contact Person E-Mail: [email protected]
Conference The 7th UK Lyme and Tick Borne Diseases Conference will be on Friday 18th July 2008, at 9 a.m. The conference will be based at John Foster Hall, Leicester University, Manor Road, LE2 2LG.
There will be a reception and conference dinner on the Thursday evening. (Optional)
John Foster Hall is a new purpose built conference facility, set in 40 acres of landscaped grounds, including the botanical gardens, creating a green and relaxing setting for the conference.
2008 Speakers Dr. Robert Bransfield : An overview of neuropsychiatric Lyme disease.
Dr. David Owen : Lyme disease - An elusive diagnosis.
Dr. Klaus Eisendle : Tissue testing - Focus floating microscopy as a diagnostic tool for cutaneous borreliosis.
Dr. Sarah Randolph : How tick ecology determines risk.
Dr. Sarah Chissell : Lyme in Pregnancy.
Further information, prices and booking.........
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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