posted
Hi, I'm a mom of a possible lyme sufferer who is
very confused at what to do or expect at this
point. My daughter is 15 and has had some
symptons for 2 years, at least. It started as
pain in the knees and stiff neck muscles, then
hips then up the back and shoulders, shins, jaw,
headaches, nausea, dizzyiness, all escalating.
She was very active in sports and horse back
riding so we related everything to those
activities, went to orthopedics, musculosketal
docs, physical therapists, chiro. etc. She was
tested for lyme but got 2 neg. results until this
rhemu. internist alt. med. doc. we went to said
we needed to do the definitive test before we
call it fibromylagia. Igenex gave us a positive
test but only with the IgM. Doc. started her on
minocycline and she promptly got very nauseous
and headachy. He sent us to infectious dis. doc
who doubted the validity of the pos. and said
that it would only be a recent infection with
that test. He agreed to treat anyway and changed
her to amoxicillin. I know she needs intravenous
but he agreed to do that later if there is no
response. ??? Is this good enough? Is this
drawing out the treatment and hurting her in the
long run? Should she feel sick as response to
med. right away? one day of amoxicillin-diarrhea
last night home today with stomach ache and
headache. Will she have herx. response? She is
missing alot of school. Will she feel bad all
during this treatment. Should I have a homebound
teacher set up? When do you give up on thinking
its lyme and say ok its fibromylagia, whatever
the heck that is? I know you can't really answer
these questions but I would appreciate your
input.Also anybody know a good lyme doc near N.
Virginia area? thanks for your time, Mckale
Posts: 13 | From Winchester, VA | Registered: Feb 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I have sent you a private message with info. Click on "my profile" above and from there you should see te message. Then click on that and you should see the info I sent.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Welcome Mom-
You need a LLMD, lyme literate doc. They can be of any sort but have taken the time to educate themselves about tick-borne infection. They understand that tests results can mean very little. A good doctor will treat based on your daughter's symptoms and use blood work to support and track her progress. They will also test/treat for co-infections.
My son was very ill with lyme, bit between 6-7 grade had little and poor treatment until the end of 8th. I too thought he needed IV, but decided to try long term orals first. He started long term oral antibiotic treatment at the end of 8th grade, herxed most of 9th grade, slept through most of 10th grade, gradually improving. Our doctor changed protocols last October 3 and by the end of the year my son had made major improvement and is a successful 11th grader.
We found my son's health too irratic during 9th to schedule a tutor, so we did it ourselves, a scarey thought since we both have lyme too. We all got through it. He was home schooled for 10th. The good news is that as hard as it was for him to do his homework or tests the knowledge seemed to be in his brain. He was fine on the acheivement tests this past November.
It is a rough time for your daughter, she needs all the emotional and TLC you can give her. It was very hard for my son to "earn" F's for work not completely from teachers who didn't understand and had no compassion. His 504 meant squat to most of them. We have the superintendent on pur side now so he is getting good accomadation, which actually is still needed but in other ways as his health improves.
posted
Thank you all. You confirmed the evidence that I have been gathering and have given me resolve to push on until we find the right md and treatment plan. Hopefully I will not have any more stories to tell. I thank God for people like you who desire to help others despite your own trials and tribulations. I know you will be blessed for it! Kathy Posts: 13 | From Winchester, VA | Registered: Feb 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Mom.
Her positive IGeneX IgM, along with her feeling WORSE on antibiotics, is pretty much proof positive she's been LYMED!
Don't expect nuthin' but back-talk and skepticism from non-Lyme literate doctors. It's very energy-draining and wastes precious time. You'll feel so much better when in the hands of a competent LLMD.
It ought to be criminal how doctors still have no clue about Lyme. When they start up about how 2-3 weeks of 200 mg. of Doxycycline should do it, I always want to ask them, "OK, and what would you propose to do to eradicate the cyst or L form?" Just to see the look on their faces as they suddenly recall an important meeting or something (i.e., they have no freaking clue what you're talking about.)
My daughter's 14 and had similar complaints and was CDC positive for Lyme also (like mother, like daughter). In less than six months with Amoxy and Flagyl, she is a brand new girl. Knees are back in fighting form. Four months off antibiotics and still symptom-free! I quake to think what shape she'd be in if I'd entrusted her care to a reg'lar duck.
Good luck to your sweet daughter. Please keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Her positive IGeneX IgM, along with her feeling WORSE on antibiotics, is pretty much proof positive she's been LYMED!
Don't expect nuthin' but back-talk and skepticism from non-Lyme literate doctors. It's very energy-draining and wastes precious time. You'll feel so much better when in the hands of a competent LLMD.
Agree....bigtime! Dump the ID duck if you want you daughter to get well anytime soon. Time is a-wastin'!
Personally, I think minocycline will do more for her than amoxy, but everyone is different.
Yes, you may have to consider a homebound teacher. She will not be feeling well for several months, at the least.
If you could post her bands here, we can help you interpret the test. You don't have to have a positive IgM and IgG to be considered positive. Trust me!
In the meantime, read this very important link. It is written by Dr C of MO, one of the best LLMD's in the country. He explains what constitutes a "positive" test.
I don't know of any LLMD in Northern VA but there is one in Huntersville, NC, just north of Charlotte. He sees lymie patients from all over the US. He is a very good doctor.
posted
Wow- I need to hear more success stories from late stage people because I'm starting to crack. A casual friend of mine has a husband who is an ID Md. and invited me to call him for advice. He practically freeked when I told him I had set up an appointment with Dr. xxxx (LLMD recommended on this site). He felt very strongly that i shouldn't see her but didn't have time to tell me why. Said he'd call me back. What should i expect? How do I know that this brilliant man doesn't have the answer? I fear he's going to try to shoot down everything I've been hearing from these sites. Then I read what you all have been saying and I know that I should carry on. Been praying for a woman in Bible study who has had multiple health issues for years. She asked me about my daughter's symptons, said she was curious cause she had a positive lyme test back in 2000. She's having respiratory problems now. She never got treated and hasn't even considered that the problems are from Lyme!! Her doctor should be sued for not making her take treatments! I need to hear some more success stories, please!!
[ 15. February 2006, 04:56 PM: Message edited by: mckale58224 ]
Posts: 13 | From Winchester, VA | Registered: Feb 2006
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posted
"Researcher" ....Please edit OUT the dr's name you have posted!!!!! It is against board rules to post them. YOu can PM the website address to folks, if you want to.
mckale...Most regular drs [we call them ducks, as in quack, quack] do not have a clue when it comes to diagnosing or treating long term Lyme.
Your friend who was not treated AT ALL is a prime example of ducks not "getting it" when it comes to Lyme.
Your friend's ID MD is going to shoot down everything we've told you and then some. In our world, ID's are the WORST when it comes to treating and understanding Lyme.
That's totally crazy, but true. YOu'd think they would know the score, but they don't. They are also very close-minded. They believe what they were taught in medical school, and that's IT! End of story!
Like I said before, if you want your daughter to get well, listen to us. To do nothing would be the worst thing in the world.
posted
OK-Sorry about the name. The thing that i can't get over is the test. It's positive for IgM which i keep hearing is recent infection and i know it's been around for a while. The bands-She has + for 18, + for 23-25, + for 30, +++ for 31, ++ for 34, indeterminate for 39 and + for 41. Thanks again for any input. McKale
Posts: 13 | From Winchester, VA | Registered: Feb 2006
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quote:Originally posted by mckale58224: OK-Sorry about the name. The thing that i can't get over is the test. It's positive for IgM which i keep hearing is recent infection and i know it's been around for a while. The bands-She has + for 18, + for 23-25, + for 30, +++ for 31, ++ for 34, indeterminate for 39 and + for 41. Thanks again for any input. McKale
It doesn't matter about IgG or IgM....REad the link I gave you above...written by DR C of Missouri
The bands you just posted SCREAM LYME!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by mckale58224: The bands-She has + for 18, + for 23-25, + for 30, +++ for 31, ++ for 34, indeterminate for 39 and + for 41.
Bands 23-25 is a classic hallmark borreliosis antibody Band 31 is a classic hallmark borreliosis antibody Band 34 is a classic hallmark borreliosis antibody Band 39 is the most specific antibody for borreliosis OF ALL [indeterminate means the same thing as a weak positive...] Band 41 is the most common borreliosis antibody
So if it talks like lyme, walks like lyme, it must surely BE Lyme!
I wish you had posted this in Medical where you'd have more than 2 or 3 people discussing this with you. Did you post it there also and I just didn't see it??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots. But actually, more IgM blots are positive in chronic borreliosis than IgG.
Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies. Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result. Response to antibiotics is the same if either is positive, or both."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Kathy, welcome to our 24/7 suppert/educational board. You'll learn a lot.
Before I forget it, would like to suggest that you daughter & other poster's daughter correspond. There is a TEENAGER lyme board, but I don't have that right in front of me.
Kathy, we neuro lymies can't read LONG continuous paragraphs so I'm going to break up to 6-8 lines of text & DOUBLE space in between. Please do in future for us so we can help you. We can't read as is ok.
Please mention to your friend about getting treatment NOW for her lyme. Use info below to share with her.
quote:Originally posted by mckale58224: Wow- I need to hear more success stories from late stage people because I'm starting to crack.
A casual friend of mine has a husband who is an ID Md. and invited me to call him for advice. He practically freeked when I told him I had set up an appointment with Dr. xxxx (LLMD recommended on this site).
He felt very strongly that i shouldn't see her but didn't have time to tell me why. Said he'd call me back. What should i expect? How do I know that this brilliant man doesn't have the answer? I fear he's going to try to shoot down everything I've been hearing from these sites.
Then I read what you all have been saying and I know that I should carry on.
Been praying for a woman in Bible study who has had multiple health issues for years. She asked me about my daughter's symptons, said she was curious cause she had a positive lyme test back in 2000. She's having respiratory problems now. She never got treated and hasn't even considered that the problems are from Lyme!!
Her doctor should be sued for not making her take treatments! I need to hear some more success stories, please!!
Kathy, look on TREEPATROL'S NEWBIE LINKS for "success stories" ... there are a lot of them.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
Hi, This has been a hard learning experience but thanks to this site, less than 3 weeks after diagnosis, we have a LLMD and my daughter is on the way to recovery.
The ID who is a friend's husband has spoken. He wants to send us to Dr. Allen StXXXX, the researcher who discovered the lyme infection, for testing. Am I right in thinking from info I've read, he is a champion for underdiagnosis and undertreatment?
We will not take this course. I have been convinced otherwise thanks to your comments and info links. The newbie site is very helpful and I will continue to search here for answers. I understand the ID's reaction to the LLMD is because of judicial action against her. I understand that now too.
God Bless You all! McKale
Posts: 13 | From Winchester, VA | Registered: Feb 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh McKale, that just makes my day! I'm SO glad you're getting your daughter good care! Thank you!! I know she'll get better now.
And thank goodness she will not be getting -- dare I say -- a "bum Steere" !!!
As you read more (and believe me, you'll be reading and reading and reading!!!), you will discover the huge division in the ranks when it comes to Lyme disease. Most mainstream docs, especially ID docs, believe it's easily cured with just a few weeks of low dose abx. Any lingering symptoms are attributed to the bogus "post Lyme syndrome."
However, REAL doctors who treat REAL Lyme patients (i.e., LLMD's) know that this is due to continuing bacterial infection, amply documented in peer reviewed scientific literature. (Read up on "persistence" articles in the newbie links.) In other words, sometimes it takes a long time to kill the freaking bacteria. That's all there is to it.
Thousands of Lyme patients have been left to become chronic sufferers because of doctors' refusal to admit they're wrong. I'm so glad your precious daughter is NOT going to be one of them!
My 14-year old, whose knees hurt so badly she missed most of soccer season last year, is finished with treatment and symptom free and rarin' to go! Yours will be too!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by mckale58224: The ID who is a friend's husband has spoken. He wants to send us to Dr. Allen StXXXX, the researcher who discovered the lyme infection, for testing. Am I right in thinking from info I've read, he is a champion for underdiagnosis and undertreatment?
We will not take this course.
"We will not take this course." Yes! You made my day too!!! Seeing him would be a death sentence in more ways than one!
Keep us posted on your daughter's progress, OK? And remember, she will feel much worse before she feels any better.
You will have to be strong in your resolve about this, so keep reading and becoming more informed. Go to Medical Questions anytime you have questions about her treatment.
and believe me, you WILL have questions!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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