posted
Hello, my name is Victoria and I am a 29 year old mom to 3 children. My husband and I take them hiking nearly every weekend, especially in the summer. One June 11th I noticed an odd mark on the back of Matthew,my two year old's back. It looked like a pressure mark, as if he lay on something for a long time. It was the size of an egg and fever-warm to the touch. I thought it was a reaction to the lemonade drink mix he had just tried for the first time. The next morning, the mark was a little bigger. I still wasn't overly concerned until about the 4th or 5th day. By then it was about 3 times larger than when it started and I noticed another smaller mark on his leg as well as an odd redness to his one ear, with a red border around it (almost like a paint streak was painted around it) On seeing this, I called the pediatrician and left a message. While waiting for a call back, I was doing a google search. I came across pictures showing the Lyme Disease rash and Matthew's looked exactly like it. His had changed at this point from being solid red to, as it grew, clearing out in the middle. When the nurse returned my call, I told her what happened and that since we were avid hikers, I was concerned about LD. She put me on hold and came back with a brush off. She said "they" thought is was just a reaction to a bug bite, possibly a spider, and to call back if it wasn't better in a week or so. I asked again about the Lyme and she insisted she didn't think it was. I'm not a doctor so was worried I was overreacting. Matthew had been acting particularly fussy recently but is behind on his speech so doesn't communicate what is going on. On June 25th, after the rash having grown to cover his back from one side to the other, and one showing up on his chest and the one on his leg growing just a little (and both of them clearing in the center...the ear cleared up entirely) All of them were very faded by this time. I talked to a friend who told me to take him up immediately, because she was positive it was Lyme. I called back up, relayed the exact same story as the week before, and this time, without even seeing him they diagnosed Lyme Disease. I had taken progression pictures of the rash, so took them up to show them, since at this point the ones on his body were barely visible. They started him on Amoxil right away and sent him for a titer (sp?) test for which I am still waiting on the results (it had to be sent away). When his rash on the back cleared, we could clearly see a tiny bug bite mark...red, raised, and very small. We check him carefully after every hike, I thought a tick had to be on for several days before you could become infected? I am furious that I was brushed off the first time I called in and I'm frustrated with myself for not trusting my mommy instinct and pushing the issue. I am so worried that because it was left go, he may have progressed past the beginning stages and some damage to his little body may have been caused. He seems fine, everything I am noticing that could be different with him could also be explained by being two years old. He has been fussier than usual and clumsier than usual. He has also been more sleepy, this has been noticed by friends who visit also. I would appreciate advice on this because I now nothing except what I have found on the internet. If the titer test comes back negative, does that mean the rash was something else? If it is positive, do I just hope the antibiotics take care of it all? What things should I watch for after wards? When the antibiotics are done, is he good to go and healthy? I don't feel comfortable now with what the dr. tells me and I would like to be more well informed before going in again (and we are switching pediatricians over this. It was a valid concern and they couldn't take time to see him. I had even offered to email pictures if they didn't have time for an appointment that day) Thank you for any assistance you can give me. I will be reading through old posts seeing what I can learn.
-------------------- Victoria Posts: 3 | From Central Pennsylvania | Registered: Jul 2009
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posted
is he already on anti-biotics? Early treatment is key. June 11 isn't too long along.
I think there is still time but you need to get moving. Others will know lots more.
Posts: 48 | From california | Registered: Jul 2009
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julielynne4
Unregistered
posted
Seems like if he got treatment a.s.a.p. and for the appropriate length of time, that he would be able to get rid of the lyme.
I am sure you have read about this already, but you must not listen to mainstream doctors regarding lyme disease unless they *happen* to follow guidelines set by ILADS.
It does not matter how his test comes back, the tests are not meant to diagnose, and yet they are used for this very reason. The tests have about a 45% accuracy rate but doctors are ignorant about this.
Sounds like lyme to me, I hope you can take him to a Lyme Literate Medical Doctor for proper diagnosis and treatment.
If your son's regular pediatrician does put him on antibiotics, it will likely be for 21 days or somewhere around there. That is not likely to be enough.
It sounds like you are on the right track and you know already that doctors are generally clueless about this horrible disease.
It is not too late, your son will be fine, just needs proper treatment. Blessings, Julie
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bettyg
Unregistered
posted
breaking this up for us neuros to comprehend and read. please do this in the future; big thanks betty
quote:Originally posted by butterfly_2926:
Hello, my name is Victoria and I am a 29 year old mom to 3 children.
My husband and I take them hiking nearly every weekend, especially in the summer.
One June 11th, I noticed an odd mark on the back of Matthew,my two year old's back. It looked like a pressure mark, as if he lay on something for a long time. It was the size of an egg and fever-warm to the touch. I thought it was a reaction to the lemonade drink mix he had just tried for the first time.
The next morning, the mark was a little bigger. I still wasn't overly concerned until about the 4th or 5th day.
By then it was about 3 times larger than when it started and I noticed another smaller mark on his leg as well as an odd redness to his one ear, with a red border around it (almost like a paint streak was painted around it)
On seeing this, I called the pediatrician and left a message. While waiting for a call back, I was doing a google search.
I came across pictures showing the Lyme Disease rash and Matthew's looked exactly like it. His had changed at this point from being solid red to, as it grew, clearing out in the middle.
When the nurse returned my call, I told her what happened and that since we were avid hikers, I was concerned about LD.
She put me on hold and came back with a brush off. She said "they" thought is was just a reaction to a bug bite, possibly a spider, and to call back if it wasn't better in a week or so. I asked again about the Lyme and she insisted she didn't think it was. I'm not a doctor so was worried I was overreacting.
Matthew had been acting particularly fussy recently but is behind on his speech so doesn't communicate what is going on.
On June 25th, after the rash having grown to cover his back from one side to the other, and one showing up on his chest and the one on his leg growing just a little (and both of them clearing in the center...the ear cleared up entirely) All of them were very faded by this time.
I talked to a friend who told me to take him up immediately, because she was positive it was Lyme.
I called back up, relayed the exact same story as the week before, and this time, without even seeing him they diagnosed Lyme Disease. ************************
I had taken progression pictures of the rash, so took them up to show them, since at this point the ones on his body were barely visible.
They started him on Amoxil right away and sent him for a titer (sp?) test for which I am still waiting on the results (it had to be sent away).
When his rash on the back cleared, we could clearly see a tiny bug bite mark...red, raised, and very small. We check him carefully after every hike, I thought a tick had to be on for several days before you could become infected?
I am furious that I was brushed off the first time I called in and I'm frustrated with myself for not trusting my mommy instinct and pushing the issue.
I am so worried that because it was left go, he may have progressed past the beginning stages and some damage to his little body may have been caused.
He seems fine, everything I am noticing that could be different with him could also be explained by being two years old.
He has been fussier than usual and clumsier than usual. He has also been more sleepy, this has been noticed by friends who visit also.
I would appreciate advice on this because I now nothing except what I have found on the internet.
If the titer test comes back negative, does that mean the rash was something else?
If it is positive, do I just hope the antibiotics take care of it all?
What things should I watch for after wards?
When the antibiotics are done, is he good to go and healthy?
I don't feel comfortable now with what the dr. tells me and I would like to be more well informed before going in again (and we are switching pediatricians over this.
It was a valid concern and they couldn't take time to see him. I had even offered to email pictures if they didn't have time for an appointment that day)
Thank you for any assistance you can give me. I will be reading through old posts seeing what I can learn.
check your profile above for my pm to you of KID LLMDS in your area
you need lyme literate specialist; NO ONE ELSE WILL DO and only 16 nationwide!!!
************************************************ how many days of amoxycillin did dr. give you & what dosage?
he needs to be on this 3 months; 2 months longer than 4 weeks, and NO SYMPTOMS SHOWING for this amount of time before stopping amoxy!!
i'll paste my welcome note. print off dr. burrascano's treatment guideliens and 2nd link where i broke this up for easier reading
dosages/meds for KIDS/adults ... print this off...
after my welcome note; i'll post geneal's KIDS LIST OF SYMPTOMS for you !! **************************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
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. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN -5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
CHILDREN'S LYME SYMPTOMS compiled by Geneal 6-07 From ``GENEAL'' June 2007
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. Geneal, 2007
Also, see Cheryl''s LYME INFO extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 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.
Pronunciation of common co-infections from lymetoo/tutu 12-13-07
Ba BEE' see oh sis (Babesiosis) or commonly known as Ba BEE' sza (Babesia) bart un EL a (Bartonella) er LICK' ee oh sis (ehrlichiosis
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever."
Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats).
Bartonella can also be transmitted by ticks that transmit Lyme Disease.
In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified.
While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
Babesiosis
As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
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posted
I apologize for posting in one large paragraph! Thank you Betty for breaking it up.
Matthew is on 14 days of Amoxil (1 teaspoon 3 times a day)
I am going back up to read all the helpful information you have posted, thank you so very much.
-------------------- Victoria Posts: 3 | From Central Pennsylvania | Registered: Jul 2009
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bettyg
Unregistered
posted
victoria, you are most welcome
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Shosty
Unregistered
posted
Lyme tests test antibodies, and it takes awhile for the body to produce antibodies to the bacteria (6 weeks, as I remember,but someone else can correct me). So the test your son had is useless.
The dose your son is on is unclear- cna you give it in mg?
Two weeks is not long enough, but it gives you some time to find someone else to prescribe more. Personally, I would ask for at least 6 weeks.
One of my kids did 4 weeks of amox., but symptoms showed up when she stopped. She was old enough to do tetracycline, and followed the amox. with 2 months of tetracycline. She has been fine since.
You probably caught this early enough. A lot of us can relate to your situation.
If possible, get to a "Lyme literate doctor" for the remaining weeks of antibiotics. People can refer you here, or you can call the Lyme Disease Foundation or Association in Ct.
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Shosty
Unregistered
posted
Betty G, as a side note, breaking things up is hard for my neuro Lyme, because scrolling makes me sick, and when people break up a passage, more scrolling is needed!
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posted
Treat longer than 14 days. My son had a large bullseye and had 6 weeks amox and was fine. He also did not start abx until weeks after the initial rash. HE IS FINE TODAY!!!! We got it in time.
My 2 year old daughter was infected from a tick bite and was on 6 weeks of amox. But my daughter didn't resolve because the tick that bit her had babeosis. You MUST keep a careful eye out for coinfections that may not be addressed by amoxicillan.
The babeosis symptoms included intermittant fever and constant chills, night sweats, anxiety. Apparently, her body could not fight the lyme even with the help of an antibiotic because of the babeosis which required antimalarias.
The good news is that even she was treated and resolved. It took 22 months of antibiotics and antimalarials.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
This information is so helpful, thank you so much.
The pediatrician called this morning and Matthew's titer test came back positive for Lyme.
The nurse was nonchalant about it. She said "well we caught it early so once he finishes the meds he'll be fine".
I am upset that through this he has not even been SEEN by a doctor. It was all over the phone and blood work.
I am going to see about calling/finding a doctor who knows more about Lyme. Shosty, his prescrip. bottle reads "Amoxicillin 250MG"
I feel frustrated that the nurse spoke to me as if it was a common cold and didn't explain anything to me. Hopefully this is it and Matthew will be fine, but I would like to have been a little informed!
-------------------- Victoria Posts: 3 | From Central Pennsylvania | Registered: Jul 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
butterfly,
I can only speak in terms as if he were my child...
Knowing what I know now and considering where you live, I'd call the Lyme Ped Specialist up in CT and make an appt. now. (GET A COPY OF THE LYME TEST FROM YOUR CHILDS CURRENT DOCTOR!!!) There is a wait list of at least a couple of months and by that time you should know if the abx that your apparently unconcerned doctor gave did the trick or not. You can always cancel the appt in CT if you feel comfortable, but this at least gets you a place in line.
Otherwise, if your child is still sick, I seriously doubt any help will be available for months.
Go to the Seeking A Doctor section of this site or see bettyg's links she posted to you. Truly, Best wishes to you all.
ping "We are more than containers for Lyme"
P.S. - The doc in CT does not take insurance and the OV is expensive. Save up the $$$ now!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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