12 yr old with lyme symptoms?

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GBuck
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/6/2009 8:05 PM (GMT -7)   
My 12 yr old has been getting sicker and sicker every year.
 
She started out with a UTI at 3 yrs old that was misdiagnosed as a flu and it went to her kidneys, for 10 days before they diagnosed her. (she had a red hot rash on her monz.) She was actually starting to go into shock by the time she got ABX. They only gave her 10 days of antibiotics and said she had an uncomplicated uti. It kept coming back after a month. She had recurring UTI's for years. (e coli and klebsiella). I feel they never did give her enough ABX to wipe it our for good.
a year later knee pain started, and a year after that hip pain. Then it started moving back and forth hip to hip, with a weird red ,hot rash where the pain was!!!! Eventaully the pain started moving to her low back. It now moves around, and can be on shoulder blades too, or neck. She now has pain in all these areas plus toes, tendonitis in wrist and fingers, calf and thigh muscle pain, fuzzy brain, insomnia, bad breath, acne, food allergies, ear pain with black wax, eye twitching, swollen lymph nodes on and off, propensity to migraines,  sensitive to light and odors, and IBS. She is stiff upon rising. Now she is starting to get dizzy upon standing and is blacking out and fainting to the floor. (her pedi wants her to see a heart doctor). I had her pedi order IGENEX test and she showed ++ on 41, and ** IND** on 31 , 34 and 39 with a note of" clinical significance". Do you think she could be sick from lyme? or do you think the klebsiella could be in her tissues? Does any one have a lyme literate doc in the SF bay area they can refer me to? We need help - we need a doc who will give her ABX treatment... Please help!

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/7/2009 4:53 AM (GMT -7)   

Hi GBuck, welcome to the board!

I am sorry your daughter is so sick.  What do her rashes look like?  Be sure to get photos of them, it is important documentation.  Place something near the rash, like a coin or ruler, to give it size definition.

Below is a Lyme symptom list.  You can have any combination of symptoms.  

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
 

It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  It is good you had the Western Blot done at Igenex.  I will post the breakdown of the bands below this. 

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Has she been tested for these yet?

Are you aware of the Jarisch-Herxheimer Reaction (herx)?  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary, but it is a good sign the antibiotics are working.  During treatment it is a good idea to document your daughter's symptoms daily if possible.  One way to do this is to list the main symptoms she has each day with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when her herxes occur and how she is responding to the meds.

You can email me at me at ko_@bellsouth.net for a doctor recommendation.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

Hang in there okay?  Good help is available.  Your daughter is lucky to have such a caring parent!



ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/7/2009 5:14 AM (GMT -7)   

Hi GBuck.  Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

The IgM tests for a more recent infection and the IgG a longer standing one.  Did your daughter have both of these done?  Band 41 is often the first to show.  Bands  31, 34, and 39 are all Lyme-specific bands.   I think her results are significant and warrant evaluation by a knowledgeable doctor.


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 7/9/2009 12:58 PM (GMT -7)   

Hi GBuck!   Welcome to the forum.  I am sorry you and your daughter are having to deal with this.

I agree with Ticker.  Please email her.  She has lots of good info. she can give you.

We see a doctor in the SF bay area in CA.  We travel a long way to go there, as we live in the central valley of CA.   We have met other people from the bay area that go to various practitioners.  If I can be of any help, just email me.  I will do my best to assist you.  Also,  the Calif. Lyme Disease Assoc. is a great resource.  You can contact them for info too. 

Were you talking about California?  If not, then sorry to add useless info.  Please email Ticker to get started and "google" any lyme disease assoc  or support group in your area.  You will find their info valuable.

Read the topic at the top of the first page of this forum entitled "The Basics, Newbies check this out".  It will have info you will find helpful.

Best wishes to you and your family.     bablymers mom


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/9/2009 1:01 PM (GMT -7)   
Ticker,

Thanks for posting the Western Blot bands again.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/9/2009 3:38 PM (GMT -7)   
My pleasure : )
 

GBuck
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/12/2009 12:40 AM (GMT -7)   
Thank you everyone! Sorry my reply is so late as I just returned from out of state.

I havent seen the rashes on her for a few years. They looked like a solid bright red, hot to the touch rash, like you might get with a strep infection. about the size of a quarter. The interesting thing is they came up on her monz when she had the uti, and later on her hips when she had hip pain.

My DD hasn't been tested for co infections yet, But I do need to get her tested ASAP. She is a nature girl, always running around barefoot/barelegged, hunting for bugs, handling her chickens, etc. I would not be surprised if she is co infected.
my home is up for sale and we will be moving out of CA, and to Idaho - when it sells. I doubt there are many lyme docs out there.

She did have both the IGM and the IGG.

IGM shows 31 and 34 IND.

IGG shows 34, 39 IND with ++41

I did finally get amoxicillin for her when she had swollen lymph nodes last week. Along with it I gave garlic, enzymes, and idoral (iodine) . She had quite a herx of all over pain and she was crying (it usually isn't so bad that it causes her to cry) and I ended up having to rub her down with castor oil to reduce her inflammation/pain. It's interesting that aleve or advil do not work for her pain anymore.
ps...In January I also gave her 2 months of samento, because I couldn't get anywhere with her pedi. I wonder if that affected her tests? Her back pain would get worse after samento.

I will privately email you for more info on docs. Thanks again SOOOOOO much. I just know in my heart this is bacterially related, of some sort.

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 7/12/2009 3:32 PM (GMT -7)   
Hi GBuck, I emailed you back. Hope you got it. Best wishes. bablymers mom
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