posted
My daughter is 16 years old, non verbal, hearing deficits and her developmental age of 3 yrs old. Around 7 months ago she started experiencing swelling in her knees and wrists and seems with low energy. At the beggining the symptoms were overlooked because she had a knee injury almost two years ago and I thought it was because of that until her teacher and I start noticing swelling in her wrists. On June, after insisting to my primary doctor for lab tests she ordered urine, blood work and xrays. All of them were normal but the erythrocyte sedimentation rate was high (29) and she was reactive in the western blot test only in band 58KDIGG although she was negative for lyme. I am looking for a second opinion regarding lyme because as I read about the subject of lyme it could cause hearing loss. In her last hearing test, last February her hearing decrease after years of being stable and makes me wondered if is still lyme because it was caught so late. Her pediatrician gave her anyways antibiotic for two weeks but little improvement. Waiting for reumatology appt. Also trying to contact lyme literate in ma.
Posts: 6 | From ma | Registered: Jul 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Juancha. Which lab did your daughter's Western Blot? Be aware that labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX Lab in Palo Alto, CA does (bands 31 and 34).
The best thing you can do if you think your daughter may have Lyme is to have her evaluated by a Lyme-knowledgeable doctor. Besides Lyme, ticks can also transmit several co-infections. You can post in "Seeking A Doctor" for doctor recommendations for your area.
Posts: 4682 | Registered: Oct 2000
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posted
Thank you for the info. Unfortunatelly it was with Quest Diagnostic. And you're right she wasn't tested for bands 31 and 34. I'm in the process to locate a lyme expert but its so hard because some of them don't accept insurance.
Posts: 6 | From ma | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might want to rethink that rheumatologist appointment you are waiting for. 99.9999 % totally disregard &/or are ignorant of lyme and other tick-borne infections.
UNLESS you have reason to believe this one is ILADS educated and thoroughly lyme literate, you will not find what you are seeking there: knowledge.
Details to follow that I hope will be of help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, one band can signal lyme, along with history, symptoms, clinical presentation. Lyme is supposed to be a clinical diagnosis in the end.
My eyes are able to pick out just a word here and there in your post ("rheumatologist" jumped out at me and did "hearing / ears"). I can't read your full post to add thoughts about other symptoms but if you are posting here, I'm sure you have good reason.
In the future, you might post in paragraphs max 3-4 finished lines. Many here have "wavy" vision or other things going on and really need the space breaks for the eyes - and brain.
I know what it's like not to be able to access a LLMD due to budget. Still, do not - do not - settle for ignorant doctors. There may be various ways you can weave through this obstacle course.
FIRST: talk to all area lyme support groups within a 200 mile radius to you. You may find a doctor who just might take insurance (although if they do, treatment might be limited. Still, ask all around. Talk to those who know about lyme to find those professionals who know. Someone may "fly under the radar" so to speak.
AVOID STEROIDS. Rheumatogists who are lyme ignorant often prescribe steroids or other things that can be damaging to someone with untreated lyme.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
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.
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
[ 08-02-2013, 01:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention hearing. Lyme and other TBD (tick-borne disease) can damage the ears and balance in various ways. Sadly, while treatment is vital, some of the Rx needed can also be toxic to ears and balance system.
Howevr, what helps protect ears during treatment is liver support - it is REQUIRED, IMO, even before starting any drug that has any degree of possible ototoxicity.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anyone who may have lyme, TBD or other chronic stealth infection might ask this group about doctors who they find to be LL:
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
- There IS hope. I know there is so much to sort out and it's not right that you don't have the doctors right there who are fully educated, in your local clinic, on your insurance policy to help.
Still, there is hope. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
My LL doc says that band 58 is 80-90% lyme specific.
And on the IGENEX results it does state that a single positive band may be significant.
Lyme and co. suppress the immune system so badly... A good lyme doc won't rely on the blood tests to begin treatment for lyme, they will do a clinical diagnosis.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
2 weeks of an antibiotics... I don't think the pediatrician is lyme literate if this is the premise for saying your daughter definately doesn't have lyme... An good LLMD will do a thorough clinical evaluation. Perhaps post on Seeking a Doctor on this forum for an LLMD in your area? Best wishes to your daughter Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
58 = unknown, but may be heat-shock Bb protein
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As the school calendar (however that may be arranged even if informally) is starting again soon, the question of vaccines may come up for your daughter. Those with lyme (or any possible chronic infection) often do very badly with vaccines for various reasons.
Be sure to consult with a LLMD or LL ND - FIRST - regarding all options & support around this matter.
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