MDJunction - People Helping People
 
Ask a Question
10/31/2010 12:41 PM

Daughter Recently Diagnosed

gdngt
Posts: 8
New Member

I'm new to the world of Lyme disease and my heart goes out to people who have to suffer through it.

My dd was recently diagnosed, after 10+ yrs. of being ill, so she is just beginning the battle.

We're using a MD/ND. He has started her on a strong garlic extract to start with. It has only been about 3 weeks.

She's also getting homeopathic treatments and may start on Rife treatments in the near future.

She is doing a yeast protocol for her candida (which was diagnosed in the past). She had quit doing it back then, because she wasn't feeling a difference, but recently started it up again and felt better. Her achiness let up.

Homeopathy so far has gotten rid of the sound sensitivity with her headaches, which she is glad about.

Do any of you have multiple allergies since getting Lyme disease?

My dd has had this for years and I suspect at least part of it is from the candida infection.

And have any of you had low adrenal function with it? Often called adrenal fatigue, which I have.

Do any of you know any elderly people with it?

Since my dd was diagnosed, I've wondered if mom could have it, causing her fast decline this year with "Alzheimers" and going by how she was for several years before.

It has been nice to have an explanation for most of her problems. Now I just hope she can move ahead and start her life again.

It has been heartbreaking to see her suffer like she has and I've received a lot of criticism for my choices for her health care, but I think she'd be a lot worse now if I had gone the medical route.

She would've been on antidepressants and heaven only knows what else.

Diet is so important with illness too, so I think that has helped her over the years.

Thanks to those of you who run this forum. I really like how you strive to keep it friendly. That's rare on the 'net.

I wish all of you the best in your journey to health!

Post edited by: gdngt, at: 10/31/2010 12:43 PM

used quotes to enlarge text for neuro lyme for me/others to comprehend better. bettyg

Post edited by: Bettyg, at: 11/02/2010 11:32 PM

Reply

11/02/2010 06:41 PM
happymom3
 
Posts: 428
Member

my daughtr suffered with lyme so i know how you feel as a mom.its hard...are you going to an llmd?? i wasn't sure what your initials stood for..

even if you are going the natural route i would suggest you really go to someone who treats lyme extensively day in and day out because it is really a serious disease and you don't have time to waste..i wish you and your daughter the very best


11/02/2010 08:23 PM
jacquim
 
Posts: 7
Member

Hi there,

I agree with happymom....being that Lyme is a serious disease you really can not waste time in getting treatment.

Although holistic medicine is good to integate in your program, it is most important to know how serious this disease is if left untreated with antibiotics. A lyme doc is essential.

Regarding your mother, there is some evidence that Lyme is a precursor to Alzheimers and Lyme can be passed in utero.

My mother has Lupus/Slogrens like symptoms and tests negative for lyme.

I hope this is not the case, but I do believe that she may also have lyme and may have given it to both my brother and me in utero.

I test strongly for lyme...my brother does not but has symptoms. It is worth getting the entire family with symptoms tested at igenics.

Good luck and hope your daugther feels well soon.

Post edited by: Bettyg, at: 11/02/2010 11:35 PM


11/02/2010 11:46 PM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

welcome goodnightSmile

before i forget about it, look in the support forum here for subject:

ILADS CONFERENCE; click on it and go to the LAST page of comments. in there are wonderful detailed notes from a good friend of mine.

i believe adrenals are discussed also; you might learn alot since this conf. was in the last 2 weeks.

alzheimers, etc. are part of the OTHER 300 illnesses OVERLAPING lyme disease. anything is possible.

my late SIL died at age 40 of EARLY alzheimer's disease. mayo clinic did autopsy taking between 4-5 months eliminating everything else. dx early AD.

HOWEVER, now that i have a correct diagnosis of chronic lyme; been 41 yrs. this christmas; 34.5 yrs. MISDIAGNOSED; i feel my late SIL was actually lyme and/or cofections!

my brother/wife farmed with dad family farm for 10 yrs. prior to her death; walked beans, picked up rocks from fields, helped harvest, mowed endlessly, etc. all sorts of ways to have been bitten by tick/s.

please send me by private message, below my name, the full name/city/state of your ND for yoru dr. are they LYME LITERATE? many are which is good for all patients.

thank you on behalf of us group leaders for the compliment on keeping the board friendly without rage wars going on.

no. 1 leader is JAIME, currently very sick; when she took leadership helm it was with the goal of NO LYME RAGE WARS ALLOWED ON THIS BOARD! others joined her and have kept it that way.

so hats off to LEADER JAIME!! she's as sweet as can be.

i don't think i've sent you this since i didn't reply earlier; if it's a duplicate, forgive me; no way of keeping track of this with so many joining daily on our board which is almost 3300 members!!

******************

Welcome to MD JUNCTION!! I'm so glad you found us! You've come to the right place for education and support! File this in ARCHIVE, upper right hand corner! PMs deleted in 30 days!

PLEASE DO NOT POST YOUR GIVEN NAME!

File this in ARCHIVE; PMS kept for 30 days only!http://www.mdjunction.com/index.php? option=com_joomlaboard&Itemid=217&func=view&catid=3260& id=1345278

The following are some links that may be helpful to you:

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the last forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey.

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

print off BUT YOU LOOK GOOD article on page 2 of this post where I broke it up for others to read easier; we neuro lymies!

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/1275535-feeling-guilty-for-being- sick/limitstart/10#1279159

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE!

People seeking doctors might be able to get help from their state online information and support group. The groups are moderated and you have to apply. Most 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.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

example: http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

http://www.lymenet.org/SupportGroups/

This explains the MEDICAL “POLITICS” AROUND LYME and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs, naturopathic doctors:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the- Lyme-War/article/117160/

You should also be evaluated for co-infections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing.

www.igenex.com; http://www.frylabs.com; http://www.clongen.com; http://focusdx.com

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current$ 3 wks. for results!

Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage!

Be sure to download Igenex's required form IF you haven't called for Igenex to send you THEIR test kids!

MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Dr C's Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

ILADS - The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl's site 1.10

http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 87840?

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

SUICIDE HOTLINE PHONE NO. & PREVENTION TIPS

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/1275497-national-suicide- prevention-lifeline-tips

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL'S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

Betty's suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner; mark box to receive all replies and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.


11/04/2010 06:01 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi all

I just want to stress that testing is very inaccurate and you could test neg. even if you are pos. (ask for a copy of those tests. CDC neg might be a positive by LLMD standard)

I was diagnosed with MS before Lyme. I dont have MS. I do have lyme and Bart


12/06/2011 11:02 AM
gdngt
Posts: 8
New Member

It has been a while since I've been here. Yes, this doctor is a lyme literate doctor and he has many tools for the job with his multiple degrees.

I was diagnosed with it this last fall, so life just got harder than it already was.

I now wonder if I had it in my late 20s since I was really sick then. That was in the late 70s.

I haven't gotten as sick as I was then, but enough to slow me down quite a bit. The stress I'm under is making me worse, though and it won't end any time soon.

My mom had a rough winter with many ups an downs and it wore me down. That's why I decided to get tested. A few times I thought I was going to lose her.

She improved a lot over the summer, so that gave her and I a much needed break. I don't know how I'm going to treat myself when I have to be available for my daughter and my mother.

If she has another hospital run when I'm sick from treatments, I don't know what I'll do. I guess I just need to press on and take things as they come.

My dh just took an out of town job, so he will be gone a week or 2 every month.

I tried to tell him how much I'd need him here this winter, but he just doesn't understand how hard it will be on us without him as backup and support

I'm pretty much alone with this, so it may be another hard winter. My dd and I support each other. In some ways, I'm glad she's not alone with her Lyme battle any more.

My mom is on an antibiotic all the time now, since she had so many UTIs.

I need to request another test for her since she has gone downhill some again so she doesn't have to suffer through one again.

I just don't know how I'll keep on top of things this winter, not that I'm doing a great job of it now.

I don't think the people who care for her understand what I'm going through at all and that gets hard at times. I find it's a very lonely illness to go through, with hardly anyone being understanding.

Is that the way it is for many of you?

Have a good day today.

Post edited by: gdngt, at: 12/06/2011 11:04 AM

emphasized, used quotes to enlarge text, bettyg, leader

Post edited by: Bettyg, at: 12/07/2011 02:43 AM


12/07/2011 02:51 AM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

goodnight,

WOW, SUPER STRESS/OVERLOAD with so many burdens weighing you down right now.

are you the ONLY child or do you have siblings in area where THEY can take care of your beloved mom and give you a reprieve to care for yourself now with lyme and your DD??

hubby took another job out of town; wow, that's major too. do you have any close friends/LYME FRIENDS who understand who youcan talk to?

otherwise, WE'RE HERE FOR YOU 23/7 daily. we walk in your shoes; we'll listen to your concerns/rants, and give you a shoulder to cry on.

has your mom been tested for lyme/co-infections by IGENEX lab?

she's on MEDICARE RIGHT? they'll bill medicare which paid all of my huge bill but $50+.

is your mom in a nursing home; assisted living??

sending you hugs/prayers big time, and now with the holiday stresses making it worse again.

bettyg, leader


12/07/2011 11:27 AM
gdngt
Posts: 8
New Member

I do have siblings, but in other states. I think maybe I've had 5 calls total from both of them the last 2 years, so not much support.

1 comes out 1 or 2 times a year and he will spend a lot of time with mom, but at times he'll try to get me to do things I'm not ready to do, such as getting rid of her things.

I haven't told either of them that I have Lyme disease. I figure it won't change anything and I don't need the extra hurt.

My dd is the best friend I have at this time. Others have dropped out of my life and I don't blame them since I'm not always the most cheerful person.

I have 1 cousin who is the only other one who has the same relationship with my mom. My mom's mother practically raised her, so they go back a long ways. She is very supportive and I sure appreciate her.

I don't know how to enlarge text on here, so my apologies for the extra work it's causing.

I took my dd in for her follow up appt. She will be starting a supplement called D-RIBOS. It's suggested use is for Fibromyalgia, CFS and cardiac health, so hopefully it will give her more energy. She enjoys the holidays so much, so I hope this will give her a boost. Time will tell.

Forgot to answer one question. Mom is in a care home with 5 other residents, so that's much easier than a nursing home. I would've liked to have kept her here, but it was a 24 hr. job and it was wearing us all down.

No, she hasn't had a Lyme test. He said he wouldn't be able to treat her aggressively enough to help her much. I do wonder if she has it, though, going by how antibiotics will knock her back so hard. I may ask for her to be tested any way, since it would be good to know.

Post edited by: gdngt, at: 12/07/2011 11:34 AM


12/08/2011 04:27 AM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

goodnight,

it's christmas time, give it a try on each of your siblings letting them know what is going on including your own health problems.

see if 1 of them might grown up and TAKE RESPONSIBILITIES on paying back to good old mom for all she gave each of them. it might surprise you!! i hope so.

but the 1 thing you said bothered me too; i wants to get rid of her things, so then you'd be wondering what had disappeared now!

yes, to have peace of mind of knowing what your mom has vs. doesn't have would be nice. after her death for an autopsy, etc, your range of motions are awful so best to do it now.

good luck, hugs/prayers,

bettyg, leader

Reply

Share this discussion with your friends:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved