My son has been having odd symptoms such as twitching, feelings of being held down, breathing oddly because he feels anxiety, general anxiety, and has had insomnia since last summer (which Dr. just thought puberty and treated with Melatonin and it has been working until now).
I was just diag. in Dec of 2007 and planned to have the family tested this summer as well.
I called and got the IGG and IGM Western blot test from Igenex and it's on the way.
I called Dr. J. in Conn. too but cannot get in until Aug. May try my LLMD if I cannot get the family Pediatrician to help too.
ANY THING ELSE I CAN DO IN THE MEAN TIME???
We are going today to the Family Ped. and I hope I can convince her to at least be open minded. I am sure she will try and run some rule out tests as well, which is fine.
I am nervous for him as it has interefered with his school now for several days.
Geez I hope the whole family does not have this??
ANY ONE"S HELP MUCH APPRECIATED!!!!!
Stacyb
[ 07. May 2008, 09:46 PM: Message edited by: Stacyb ]
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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How old is your son? Your LLMD might see him .... mine saw my 14 year old daughter.
It sounds suspicious, you did the right thing having him tested. The only thing you can really do it perhaps start him on the Cowden herbs, other than that, you have to wait till you can get him to the LLMD.
posted
I know when I was first getting sick with Lyme having my pediatrician call Dr. Jones' office got me in a lot sooner than when he was able to get me in. She was worried about my case and we didn't know what it was.
It does sound very suspicious of Lyme and I commend you for getting him tested. If your pediatrician is worried have her call Dr. Jones.
Hope this helps,
Victoria
Posts: 82 | From New York | Registered: Feb 2007
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METALLlC BLUE
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quote: Anyone please give me some input???
I have contacts to other Pediatricians who treat Lyme Disease you can try contacting them to get more information on what can be done to help your son. E-mail @ sbauzys@comcast. net
quote: My son has been having odd symptoms such as twitching, feelings of being held down, breathing oddly because he feels anxiety, general anxiety, and has had insomnia since last summer (which Dr. just thought puberty and treated with Melatonin and it has been working until now).
I was just diag. in Dec of 2007 and planned to have the family tested this summer as well.
I called and got the IGG and IGM Western blot test from Igenex and it's on the way.
I called Dr. Jones in Conn. too but cannot get in until Aug. May try my LLMD if I cannot get the family Pediatrician to help too.
Getting him in to your LLMD is a wise choice, as well as having him tested immediately. Igenex is preferred. See what your LLMD says. Dr C is a pediatric Lyme Specialist. She takes it very seriously as her child suffered with Lyme Disease. PM me for that, and I can give you that number immediately to get the ball rolling.
quote: ANY THING ELSE I CAN DO IN THE MEAN TIME???
You can do some gentle detox to help alleviate some symptoms. Activated Charcoal is easy enough to purchase. Keep fresh socks, underwear, and tee-shirts available in-case he feels cold (hands/feet), as well as night sweating/any sweating.
I'm not sure if the boy has Lyme Disease, but sadly it's not uncommon for multiple family members to suffer from Lyme disease, so it's a possibility and shouldn't be ignored.
quote: We are going today to the Family Ped. and I hope I can convince her to at least be open minded. I am sure she will try and run some rule out tests as well, which is fine.
If you can't get help treating your child immediately there are holistic options which are reasonably gentle. Some low dose Samento or other herbal therapies could be considered, but whatever you do -- don't blindly purchase anything. Ask questions, do a little homework. You can use other herbal therapies too, and Nutramedix would be the place to call. You could contact Dr. C of the Cowden, since he'll take calls.
The issue is, as you know, things get worse with treatment, so treating this alone (Herbal antibiotics are as strong as many oral prescribed antibiotics) could be terrifying for you and your child -- so try hard to get information from competent physicians who are LLMD's before attempting to go it alone.
quote: I am nervous for him as it has interefered with his school now for several days. Geez I hope the whole family does not have this?? ANY ONE"S HELP MUCH APPRECIATED!!!!!Stacyb
Try to keep calm, remember this illness while serious likely won't progress to an emergency and so you can make your calls and do what it takes without fear of the worst.
So get testing Contact Pediatric Lyme Specialists (there are others) See your own LLMD
Your primary may be able to provide symptomatic relief for the anxiety with a low dose ativan or something safe for the boy. It will help him sleep as well. Treating symptoms is acceptable until you see a specialist, unless the primary want's to attempt an antibiotic course of 2 weeks or more.
These are just ideas. There are many options, so just hang in there.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
Sixgoofy, Dr. Jones gave permission to use his name online on the forums and elsewear. Unless he's repealed that, I assume it's still in effect.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I have been doing some research regarding Lyme and signs/symptoms in small children.
I know many of you have small children that you may be concerned about. I believe my youngest child (4yrs old) may have gotten this disease from me.
For All Children
-dizziness -neck pain and stiffness in almost 90% -sore throats -swollen lymph nodes -excessive thirst, -Chest pains in at least 70%, some have palpatations -Sense of air hunger or shortness of breath, dry cough
-abdominal pain in about 50%, can mimic acute appendicitis -sometimes vomiting, heartburn -rashes that come and go, malar rashes, new psoriasis
-migratory arthralgias, joing pain in 50% to 100% -myalgias in over 80%, back ache, morning stiffness, pain at rest, muscle weakness
-frequent illnessses, dark circles under their eyes -intermittent red, hot pinnae of ears -sleep disturbance in over 80%
-Neurological symptoms are protean and can appear AT ANY TIME during the course of infection *hypersensitivity of skin, scalp and hair *Hypersensitivity to noise, light, smell *Alterations of taste *poor balance and coordination *Uncharacteristic behavior outbursts, mood disturbances, depression *social withdrawal *New onset phobias *Oppositional behaviors *Obsessive compulsive disorders *Deterioration in school performance in over 90% *Difficulty with concentration and attention in school with easily distractibility as well as "brain fog" in over 80% *New onset of ADD
*When measured with formal neuropsychiatric testing, children demonstrate defects in auditory and visual sequential processing
Less Commonly:
*Movement disorders-spaticity, ataxia, motor or vocal tics *Cranial neuropathies, e.g. Bell's Palsy or optic nerve neuritis *Peripheral neuropathies-numbness and tingling, distal parathesias, subtle weakness
Pre-Schoolers and toddlers
- Modd swings, sudden emotional outbursts - Irritabiity - Personality changes - Regression of motor and social skills (developmental milestones) - Changes in play behavior, tire easily, less active
- Trouble falling asleep, frequent awakenings - Nightmares, new phobias, recurrence of seperation anxiety - Diaper rash unresponsive to normal treatment - Frequent URI's, ear and throat infections, bronchitis, pneumonia
Congenital Lyme Disease
* Infants can be infected with Borrelia transpacentally in any stage of pregnancy and/or via mother's breast milk.
* The co-infections: Babesia, Bartonella, Mycoplasma and perhaps even the Ehrilichias can be transmitted transpacentally to the developing fetus.
* Gestational Borreliosis can be associated with repeated miscarriages, fetal death in utero, still births, hydrocephalus, cardiovascual anomalies,
intrauterine growth retardation, neonatal respiratory distress, and maternal toxemia of pregnancy.
* Infants either infected congenitally or from breast milk can have
- Floppiness with poor muscle tone - Irritability - Frequent fevers and illness early in life - Joint sensitivities and body pain - Skin sensitivity - Gastro esophageal reflux - Developmental delays -Learning disabilities and psychiatric problems
* Infants bitten very early in life will have many of the same symptoms - loss and decline in developmental milestones.
I found this to be a pretty inclusive list of signs/symptoms for small children, infants, and those suspected of congenital Lyme.
Sadly, my two children do exhibit many of these symptoms and both have positive bands for Lyme via Igenex diagnostic lab in PALO ALTO, CALIFORNIA. *******
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Clarissa
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Thank you to all of you for the well wishes and prayers and advice.
I will be calling around other LLMD's including my own today to see if we can get in sooner. I will call Dr J weekly or daily to see if any cancelations too.
My family Ped is willing to work with Dr J and test my son too with Igenex which should be here early next week. The Ped. put him on Amoxcy for now too for 30 days with refils. So I am at least hoping that may give him some time.
I am so glad our Dr is open to this possibility too.
Thank you all, Stacy
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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METALLlC BLUE
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Your primary seems open or "Lyme Friendly" -- let me know his name or her name, and tell me your experience thus far. Other patients need access to doctors who are willing to work with LLMD's -- they're often just as important as LLMD's.
Also, you need to go to ILADS.org and go to the guidelines section. Read that, give that to your doctor if possible. Those guidelines can help you make decisions about how you'll treat your child and yourself. Dr. B -- who created the guidelines knows what he's doing, the guidelines are sound.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymebytes
Frequent Contributor (1K+ posts)
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posted
Hi Stacy, How old is your son?
I know how you feel. My son was very sick at age 7 w/LD (although we didn't know it then) no Md could diagnose him, one finally decided to hospitalize him and put him on IV abx, thank God and he got well quickly. He was fine for 10 years and has relapsed this last year twice w/almost identical symptoms of your son.
2 years ago I was diagnosed w/Ld...so I learned to recognize symptoms very quickly. So I had him on abx within days of the relapse...Doxy, amoxi etc., whatever I had around. I believe this gave him a jump start.
With this last relapse, I first went to his mainstream Md because of our insurance - it covered testing etc., I wanted to rule out all possibilities, although I knew very well it was Lyme I went through the motions and process of elimination.
I got him to an LLMD and he is now in treatment.
Please read my following post about my son and what was recommended by our LLMD, it may help with some of the symptoms while you wait, I found this to work like a miracle (and was extremely skeptical, but it may help, it can't hurt): http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=286
Ask your mainstream Md for a full panel blood test, w/liver and kidney function. I don't know if I'd go too far w/it being Lyme - they really doubt this...but I told my sons Md I had Lyme, I made him think we live in a "tick haven" so I told him to run a CDC Lyme test on the outside chance it would come back pos, but no such luck.
Ruling out everything you can while you wait for your LLMd appt., is really important and then you will have no doubt it is lyme..I never doubted it was lyme, I know it well...
I would also call the LLMD and express this is urgent and get on a waiting list for any cancellations. I don't think you will have much luck (unless you luck out and have an open minded ped) to prescribe abx.
I will warn you, I asked for "symptomatic" relief for him while we waited to see our LLMD, they recommended him for "behavioral management" a shrink basically, because his tests were all normal. Be ready. Although if he is young, they make take him more seriously, as we all age, we are not taken seriously by Md's...they always think our problems are stress related.
And yes - entire families can have this...my entire family does. My story link below and our educational video.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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