posted
Help 14 yo daughter still undiagnosed! My 14 y/o has had symptoms off and on for about 5 years it seemed to start with a injury to her wrist about 4-6 months later started joint pain and locking burning sensations left her often on crutches
then disappeared for 1.5 years then broke her wrist and a few months later ovarian cysts and major pain in abdomen. So she has had joint issues and cysts only until we returned from Oregeon June 2015.
There were deers right by our front doors and a lot of hiking etc. November she came out of room and could not breathe deep because of the pain. After that has just been a landslide of symptoms
. Weakness numbness tingling burning muscles sometimes freezing cold muscles one time she even said it felt like water running down her legs then trouble breathing and chest pain then paralysis and seizures.
She recently has suffered severe debilitating fatigue and sharp instant intense pains in different areas sensitive to light and sound eye pain and ear pain.
Also nauseous every morning for past 3 weeks and other issues such as insomnia, dry mouth, and now has a sore in her mouth, dizziness, almost passing out.
She is starting now to have abdominal and rib pain. Last two days had a rash on her arm that comes and goes. These symptoms come and go so we have been to ER, urgent cares, rheumatologist, cardiologist, neurologist and all said tests were negative.
For 2 weeks she could not get out of bed and said her body just was in so much pain. She was a straight A student who loved school and was always talking about what 2 colleges she wanted to attend.
She was a social butterfly who had so many friends, our house was like a revolving door of a multitude of friends. Since the 2 week episode of not getting out of bed, she has changed.
She told me that she would rather be in independent studies because the little energy she does have, she does not want to waste it going up and down stairs at school.
She said she wanted to spend those precious rare moments with the family. Recent tests have so far come back negative and the doctor does not feel she needs to test for Nutritional deficiencies, hormones,
mold (it was found in a house we lived in for 5 years and just moved, not sure what kind) or Lyme. I wanted to attach her blood test results but not sure if i can do that and if so I have no idea how. She had the following tests
. Comp Met. Panel CBC w auto diff T3 Free T4 Free TSH
IgA anti tissue transglutaminase antibody (still waiting on results) Total Ig, A, G, M Urine prophobilinogen (still waiting for results)
Muscle creatine Kinase levels Only area came up not within supposedly normal levels is BUN hers is 6 and says should be 7-25 other paper said should be between 10-20
ALK phosphatase is 55 when should be 85-400
so they are coming in low I want to make sure that I am ordering other tests from good places because I feel like all these doctors are not helping at all. I do not have a lot of money
and not sure where I am going to get around $2,000 (1,979) for all the tests I have to order. I found The most popular Lyme testing. Complete Lyme panel 6050 and Co-infection Panel 5095 total $ 1,300
for the best Thyroid/Hormones Test and Nutritional Testing about $600. I would like to know if anyone is having similar symptoms and If the places I am going to order from are reputable ( in private I guess not sure if I can put actual companies names)
and if you think I need to get all these tests done. We don't have alot of money so I don't know about seeing a LLMD but I could save up for the tests. I just want help for her please.
It's so disheartening to see my once healthy daughter unable to do hardly anything and I as a parent just want to hold her when she cries and tell her that it's going to be okay but I can t.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SCROLL DOWN FOR ORIGINAL POST WITH WHITE SPACE ADDED - for easier reading and more replies.
I added all the links before I was able to spend some time with it and break it up.
slevine121,
welcome. I hope you find here what you need. Unfortunately, for many here, solid text is very hard to read.
Finished paragraphs of about 3 or 3.5 lines max work best. There seems to be something about any blocks over 4-5 lines that just glop together.
Next time, to edit your posts, just click onto the tiny icon of pencil and paper. To add space breaks, just hit the return at the best spaces for a new thought or about after 5-6 lines in compose. You can go back and forth with edit mode, so that helps.
5-6 lines in compose is usually about 3-4 finished if working on a regular computer or lap top. That provides some "breathing room" for the eyes.
"Breathing room" for the brain, too, and better chance of replies to all questions if each major question or thought gets a new paragraph.
When more can read, more can answer. Still, I'll post some information links below to get you started. -
[ 09-25-2016, 04:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
I see that you have posted in "Seeking" to find a lyme literate doctor. You might also inquire at this top advocacy group & check out their informational tabs.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For your daughter, if lyme is suspected, aerobic exercise should be avoided. If she has PE and is required to do any aerobics, it's important that she not do that. If she is up to it, non-aerobic movement is best.
Steroids, too. Not good for anyone with lyme or possible infection.
And, I know this is "controversial" and adds so much more to all this yet many with lyme can have very serious reactions to various kinds of vaccinations so they are usually best avoided (for many, that it. A LLMD would be the best to ask about this for each individual, of course.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One more word of advice: avoid all fluorescent lights. CFLs, energy savers are all suspect.
LED can work okay but not if on a dimmer. CREE seems to work okay for me. The WARM tone, not the cool ones.
I won't bore you with details and I'm too toasted to explain, anyway, but they can take a lot out of anyone with any neuro issues.
Now, for my apologies in handing you over a year's post graduate course work for a field of study you never signed up for and just landed right in the middle of . . . yet, since it took me so many years to learn the basics, I want to be sure you have a some of the basics.
Whatever your daughter is going through, there are so many things to consider. And, for yourself, this certainly must be a "Twilight Zone" as well.
I hope you might have a few trusted friends who might want to team up with you for your "studies" and, somehow, I hope it is possible to get in with a good LLMD soon for the best assessment and advice.
Take care of yourself, too, and encourage your daughter to listen to her body as to what the real needs are regarding rest, etc. Other than finding adequate medical care in today's "system" another major hurdle are all the voices of others or stigma.
Both of you: listen to your own common sense, especially regarding expenditure of energy.
If you "do" hugs, here's a virtual major hug to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- [CAPS] added at certian places for emphasis or sectioning of categories.
slevine121 writes;
Help 14 yo daughter still undiagnosed!
My 14 y/o has had symptoms off and on for about 5 years
it seemed to start with a injury to her wrist about 4-6 months later started joint pain and locking burning sensations left her often on crutches then disappeared for 1.5 years then broke her wrist and
a few months later ovarian cysts and major pain in abdomen.
So she has had joint issues and cysts only until we returned from Oregeon June 2015.
There were deers right by our front doors and a lot of hiking etc.
November she came out of room and could not breathe deep because of the pain. After that has just been a landslide of symptoms.
one time she even said it felt like water running down her legs
then trouble breathing and chest pain
then paralysis and seizures.
She recently has suffered severe debilitating fatigue -- and sharp instant intense pains in different areas
sensitive to light and [sensitive to] sound
eye pain - and ear pain.
Also nauseous every morning for past 3 weeks and other issues such as
insomnia,
dry mouth, and now has a sore in her mouth,
dizziness, almost passing out.
She is starting now to have abdominal and rib pain.
Last two days had a RASH on her arm that comes and goes.
These symptoms come and go
so we have been to ER, urgent cares, rheumatologist, cardiologist, neurologist and all said tests were negative.
For 2 weeks she could not get out of bed and said her body just was in so much pain.
[HER NATURE]
She was a straight A student who loved school and was always talking about what 2 colleges she wanted to attend. She was a social butterfly who had so many friends, our house was like a revolving door of a multitude of friends.
Since the 2 week episode of not getting out of bed, she has changed.
[SCHOOL]
She told me that she would rather be in independent studies because the little energy she does have, she does not want to waste it going up and down stairs at school.
She said she wanted to spend those precious rare moments with the family.
[RECENT TESTS]
Recent tests have so far come back negative and the doctor does not feel she needs to test for
Nutritional deficiencies, hormones,
[MOLD] mold (it was found in a house we lived in for 5 years and just moved, not sure what kind) or Lyme.
I wanted to attach her blood test results but not sure if i can do that and if so I have no idea how.
She had the following tests.
Comp Met. Panel CBC w auto diff
T3 Free T4 Free TSH
IgA anti tissue transglutaminase antibody (still waiting on results)
Total Ig, A, G, M
Urine prophobilinogen (still waiting for results) Muscle creatine Kinase levels
Only area came up not within supposedly normal levels is BUN -- hers is 6 and says should be 7-25
other paper said should be between 10-20
ALK phosphatase is 55 when should be 85-400
so they are coming in low
I want to make sure that I am ordering other tests from good places because I feel like all these doctors are not helping at all.
[PRACTICALITIES]
I do not have a lot of money and not sure where I am going to get around $2,000 (1,979) for all the tests I have to order.
I found The most popular Lyme testing. Complete Lyme panel 6050 and Co-infection Panel 5095 total $ 1,300
for the best Thyroid/Hormones Test and Nutritional Testing about $600.
I would like to know if anyone is having similar symptoms and If the places I am going to order from are reputable ( in private I guess not sure if I can put actual companies names) and if you think I need to get all these tests done.
We don't have alot of money so I don't know about seeing a LLMD but I could save up for the tests.
[THE DEEP IMPACT]
I just want help for her please. It's so disheartening to see my once healthy daughter unable to do hardly anything and I as a parent just want to hold her when she cries and tell her that it's going to be okay but I can t.
[End post by slevine121 - from Palm Springs CA] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, all this could point to lyme.
Photos of that rash should be of help if you have taken some.
And, as for being in Oregon, it's not clear if you lived there or just visited but Oregon Medical Board has instilled in doctors there that lyme does not exit (with very rare occasion and then with very little regard for the science of it. It's one of the most lyme hostile states.
At least, in California, doctors are allowed to know and treat lyme, even if those kinds of doctors are few. In Oregon, doctors loose their licenses if they approach it properly.
SCHOOL: she is absolutely correct about not attending. Get in touch with your STATE LYME groups &/ or
for good advice on individualized education arrangements. Talk to lyme groups FIRST before you bring up any aspect of this with the school. You need to be careful in how you approach this.
SOUND sensitivity: called HYPERACUSIS. Key symptom of lyme. To help some with ear pain:
NAUSEA & DIZZINESS: also key symptoms. GINGER CAPSULES might be of some help for now
All this "vestibular symptoms" alone could help with at home study validation. And she would probably flunk vestibular testing should she need hard evidence to prove the reality of these symptoms.
Just avoid any steroids if offered as many inner ear doctors love to pass out steroids. Steroids can make lyme so very much worse.
STOMACNH issues: a gluten free diet may help ease some pain - for starters -- and PROBIOTICS
Ovarian issues, assuming then she may also have period cramping: a naturopathic doctor might be best to help with certain herbs.
MAGNESIUM may be deficient. It can also help to a degree with hyperacusis.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SEIZURES
That's a whole other chapter. Also somewhat common to lyme . . . and far too common in my life. What has most with lyme & seizures is to treat lyme assertively with key LIVER SUPPORT on board. Also key help:
AVOID ALL FOOD ADDITIVES & ARTIFICIAL SWEETENERS
SLEEP, REST as needed. Because she deals with insomnia (another key symptom), that can be especially rough. If she can start to sense a seizure coming on,
rather than trying to "talk herself out of it" as seems the trudge on way many might think, get to a place to rest the very instant that thought even crosses the mind.
Mine are always triggered by some sensory "thing" and if hers might be, too, I can elaborate on some tricks but this can be rather isolating and that's really hard on anyone's spirit.
So to explain and to let you know this need not be a forever condition, I've never had access to proper treatment, though have learned how to best manage within my means. With some key advice from your lyme support groups, I so hope she can get proper assessment / treatment for whatever all is going on.
It is possible, entirely possible, for her life to turn around, though it may take a couple years.
ADRENAL stress is also very much a part of this and that goes with lyme, too.
AVOID GETTING OVERHEATED - the very instant that feeling hits, get cooled down, this is vital
MAGNESIUM,
a GLUTEN FREE DIET,
AVOID FLUORESCENT LIGHTS & FLASHES
FOOD / GLUCOSE STABILITY helps
I have a couple links set for the vestibular issues (dizziness, hyperacusis, vertigo) and also for seizures but you have the key helpers here for now so I'll back off).
My very best to you both / whole family. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "then trouble breathing and chest pain":
While lyme & babesia (another tick borne infection) can cause this, considering where you live - and can also cause all kinds of systemic issues -
VALLEY FEVER should be assessed.
MOLD information (though it's good you now live in a different place, still good to have in your "study file" notes:
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the 2011 & 2012 annual ILADS conferences.)
TF has posted (2016) regarding MOLD suggestions:
Here are 2 sets of notes that I took from lyme conferences. The 2 speakers are mold experts. Perhaps they will give you some leads. I hope so.
Your dear daughter needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. She needs to go where they are. Another poster sent you names for CA.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Also, you should not use your real name (if in fact you are), because this is a public forum with all sorts of people on it. Read this link about it:
You would have to contact the moderators to ask how to change your username.
Posts: 8981 | From Illinois | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One major symptom you list for your daughter that I've not addressed yet can also very much be a lyme symptom:
paralysis . . .
and passing out (an after thought I'm editing in here but, that, too common. Some kinds of low pressure can be involved such as POTS or NMH . . . and vestibular or cardiac involvement).
If she is passing out, she should avoid any HEAVY BEAT / harsh vibrational music. This is really important for matters of QT issues. Some Rx can also cause QT cardiac rhythm issues. And it goes with lyme as well.
My guess is that, with hyperacusis, she is not drawn to loud or aggressive beat music. I do hope she finds some kinds of music to enjoy.
As she is concerned with walking up and down stairs at school, might paralysis have been an incident or a sometimes symptom, I wonder.
It can be exceedingly common and understandable that anyone with lyme can just find it impossible to move when the extreme fatigue hits, a very real sort of sheer inability to move. Yet, an hour later, with aggressive rest, the arms & legs will again take the command to move.
And there can be times when someone goes through this for short term. With lyme, all bets are off.
Even some scents will do this to me. Certain colognes, or cleaning products have even caused me to pass out.
With the vestibular symptoms you describe, a sort of ataxia can also hit out of nowhere as the brain and inner ear are just all too overwhelmed -- and then add in adrenal exhaustion or sensory overload -- and my feet are just stuck. Literally.
I've had varying times of being bed bound and all kinds of shades of movement issues, and I know one person with untreated lyme who has become unable to move at all and now has a diagnosis of "MS" - often lyme is the cause - well, untreated lyme.
Not to frighten you but the facts are vital.
The documentary: UNDER OUR SKIN features a few teens your daughter's age and also some who deal with varying degrees of paralysis.
Treatment matters and can turn this around.
You see some get better at that end and also even better yet in the sequel documentary: EMERGENCE
EMERGENCE -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Okay, I am very well aware that, at age 14, no teen wants to be considered a child. Yet, do connect with this extraordinary group. Also consider PANDAS - some have both lyme and PANDAS.
posted
I can not thank everyone enough for all of your amazing information. I was going to reply to each person that left a reply, but i am kinda computer illiterate and could not figure out how to do that. Is them a way to do that so that I may ask each person a question? Or is this the only way of replying?
Posts: 5 | From Palm Springs CA | Registered: Sep 2016
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posted
sorry never mind I think I just have to PM each person
Posts: 5 | From Palm Springs CA | Registered: Sep 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I came back to say: TOOTHPASTE . . . for mouth ulcers, avoid most commercial toothpastes or harsh natural ones, too. SLS, sodium laurel sulfate in most commercial toothpastes can CAUSE mouth ulcers.
---------------------
You are most welcome. A personal reply is not necessary if you are stressed for time / energy. We know you appreciate links, replies, conversation.
However, yes, there is a way to PM - private message - most posters here. If they have a little icon with the back of an envelope and two people holding hands.
Most do have their PM function on and welcome contact. Some here are well, some are in varying stages of energy, etc.
I just don't have my PM function on usually as I'm really very ill and so exhausted. I do get carried away on one or two threads a day but I can choose and just pull detail I have on hand.
If you have a particular question I probably have enough energy left sometime today, it's quiet around here so I have turned on my PM function for today and I'll leave in on through Monday night.
So feel free, please, to PM me if you think there is anything else inside my brain that might help you are most welcome to ask.
Hmmm. Just reset my PM function and the post is not showing the "mail" icon. So, click onto poster's name and then you can see a way to "Send New Private Message" if they have this engaged. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to Sea Buckthorn oil to soothe mouth sores,
The only toothpaste I can use that does not burn the mouth sores / ulcers. Avoid any with mint or cinnamon. Even baking soda can burn yet, if she feels this is not abrasive enough, a very tiny bit of baking soda can be added to this after the sore gets a little better.
Gentle fennel oil is a fresh-tasting alternative to peppermint oil (which can burn). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I stumbled upon this today (thinking I would be doing just a little relaxing reading on news sites).
The insomnia section is just one of many that may relate to your daughter. This is an excellent interview. All so very true.
posted
I'm so sorry to hear of your struggles with your daughter. It is so hard to see a child struggle; keep the faith, you have landed in a place of excellent advice and info. You will get to the bottom of it and get her the care she needs.
As an aside, if you can't afford the testing you can do either a more basic testing (I did the baseline testing at Igenex, not the whole package) or, with a good LLMD, they will test on whatever insurance and then treat based on symptoms regardless of results; this is because Lyme disease is in fact a 'clinical diagnosis.'
posted
Keebler, I just want to say thank you for taking your time to help like you do here!!
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