posted
My 4-year-old son just tested positive for Lyme disease. (We live on wooded property habited by Deer and Chipmunks. We live in Rockland County, NY.) His only symptom was a very swollen knee, which neither he, nor we could attribute to any sort of physical trauma. Given that we live in a high-risk area, our pediatrician suggested getting a Lyme Disease test. Both the IgM and IgG were performed. (I believe this is the Western Blot, not the ELISA.) The IgM came back negative. The IgG came pack positive on seven bands.
We do tick checks on our kids every night. I remember finding a nymph tick attached last spring, but it hadn't been attached very long. (It wasn't engorged and didn't even leave a mark when it was removed. -- Additionally, this was the second tick check in as many days, so it couldn't have been on him for the amount of time they say it takes to transmit the bacterium. -- He's never had a bullseye rash.)
I thought it was strange that he came back positive for an old exposure and negative for a recent exposure. He had taken a Lyme Disease test last September and all results came back negative. He hasn't been on any antibiotics in the past year, so I don't know why the IgM antibody vanished from his system.
His knee improved daily and by the time the test results were back, the knee had returned to normal. When the results came back positive our pediatrician prescribed a twice daily regimen of antibiotics (for 21 days.)
I know that there are a few stages of Lyme disease and that if diagnosed and treated in the first stage there should be no damage incurred. Given that he presented with a joint symptom (2nd or 3rd stage) I am concerned that there could be other internal damage caused by the bacterium and that the other damage might not present itself for years to come. (Heart / Nervous System / Other)
My wife and I are going to see an infectious disease specialist associated with Westchester Medical center who specializes in Lyme Disease on Tuesday the 24th. The problem is that we have questions and Tuesday seems like a lifetime from now.
I'm sorry for rambling, but all this is just so overwhelming. There is so much information out there on the internet and none of it is 100% definitive.
It sounds like the one thing I can conclude is that he has been exposed to the bacterium that causes Lyme Disease. (The Western Blot sounds reliable.)
I'll try to articulate my questions:
1) Given that his only symptom to date has been a swollen knee (that we can't absolutely guarantee came from the disease), can I conclude that no other damage has been done to his internal systems?
2) I've read about the ability of Borrelia burgdorferi to hide in the brain and cerebral spinal fluid by altering its surface proteins, therefore remaining invisible to the immune system. If this is the case, will the course of antibiotics kill any ``hidden'' bacteria?
3) Is there anything I should be asking the doctor on Tuesday, to make sure my son is well cared for? (Are there any tests that he should be taking to make sure is internal systems weren't affected?)
I'm sure we're overreacting, but the thought of our perfect 4 year old coming down with any sort of chronic illness or worse is devastating.
(My wife recently learned that the 16 year old nephew of a friend who died of a heart attack had been diagnosed with Lyme when he was 8 years old. -- Of course my wife now thinks my son may suffer the same fate.)
Can anyone share any wisdom without scaring us to death?
Thanks, John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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posted
Do NOT go to an infectuous disease doc!!!!!!!!!1 You will be wasting your time and your son may not be treated.
Make an appt. with Dr. J in Connecticut ASAP! There may be Lyme literate docs in NY but you need to post in SEarching for a Docter at this site to get responses.
My grandson was diagnosed with juvenile arthritis. The swelling and pain started in his knees. He also had had an autoimmune disease a couple of years earlier, Idiopathic Thrombocytopenia Purpura, a blood disorder.
My g-son has had numerous tick bites. His Western Blot came back with just a few positive bands....but that is enough to get appt. with Dr. J. His brother has develped behavioral problems and will see Dr. J also.
PLEASE read what has been posted about infectuous disease docs here. Do NOT trust your son's care to a doc who is not Lyme literate!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Dear John-
My heart goes out to you and your family. There isn't anything that's more frightening than contemplating your precious child having to confront a serious illness. And it is difficult to quiet the fear even a little bit when you can't find any certain answers about what your son might be up against.
You've come to a very good place for information and for support. That is a huge first step. I'm facing a similiar situation with my 4 year old son (likely infected in utero),and there are many other parents of children with lyme here on Lymenet.
As to several of your questions. You'll find most of us are wary at best of ID doctors as a whole.
The DRs most informed about lyme do not come from their ranks, but are internalists or GP's etc. who have clinical experience treating a large number of patients suffering from lyme and often from other tick born diseases as well("co-infections.)" The term for that is "LLMD" --a lyme literate DR, and IMO, it is absolutely essential that is who you have evaluate your child .
Unfortunately, there are very very few pedriatric LLMD's. You should post a request in the "seeking a DR" section of this board; I'm sure you'll get private messages as well. I know that my personal LLMD has recommended only one- Dr. J. in CT.
(Use the search term "Dr J." here and you'll quickly get a good idea about who he is, in addition to being a hero to many.)
As for blood tests and how to interpret them. What lab was used to do the testing? Only a few in the US do adequate testing for TBD's, and the tests themselves are intrinsically pretty unreliable.
That is why a good LLMD's treatment is based largely on CLINICAL information.
I understand what it feels like to fear the worst, but I think after you speak to a LLMD and read more for yourself you'll find that a happier outcome is much more likely, though you may also have a tough road to get there.
Please feel free to PM me anytime--
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
John, so sorry to read about your son, and thanks for giving us all a detailed history and what has been happening to date. My heart goes out to you/wife and your precious son.
I'm sending you a PM, private message, with my newbie links/advise EXCLUDING my disability info; 10-12 pages.
Print off Dr. Burrascano's 05 LYME TREATMENT GUIDELINES; your son has CHRONIC LYME; it's been in his system for at least 1 yr. according to what I read.
This will give you a good idea of what to expect, treatments needed, and HERX/side effects of the antibiotics needed to KILL OFF THE SPIROCHETES in his body.
Look ONLY at Dr. B's stuff and WHAT TO EXPECT AT FIRST APPT. LIST link that is in there.
Skim over some of the other stuff; but PRINT OUT THE SYMPTOM LIST TOO; it's long, and your son may have more things you have overlooked at this time ok.
I'm sending you also Dr. J's info! YOU WANT THE BEST ONLY; Dr. J is your ONLY HOPE or the MDs he HAS PERSONALLY TRAINED!! cALL THEM 1ST OK!
Today was my first time on the board and I have to say that from these responses and instant messages I've received I am now far more informed and feel more in control of my son's health.
Thanks again, John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
>>1) Given that his only symptom to date has been a swollen knee (that we can't absolutely guarantee came from the disease), can I conclude that no other damage has been done to his internal systems?
No, most doctors do not think of swollen joints as an early symptom of the disease, so a swollen knee does not mean that the disease is confined to that area, but rather that it may have disseminated. And symptoms may go away, only to return more severely later on, if left untreated.
>>2) I've read about the ability of Borrelia burgdorferi to hide in the brain and cerebral spinal fluid by altering its surface proteins, therefore remaining invisible to the immune system. If this is the case, will the course of antibiotics kill any ``hidden'' bacteria?
Many "Lyme-literate" doctors use combinations of antibiotics, and combinations with hydroxychloroquine ("Plaquenil") to help cross the blood/brain barrier and to coax bacteria out of "hiding" and make the antibiotics more effective.
>>3) Is there anything I should be asking the doctor on Tuesday, to make sure my son is well cared for? (Are there any tests that he should be taking to make sure is internal systems weren't affected?)
As others here have expressed, I would avoid Westchester Medical Center. I don't deplore all infectious disease doctors, but those who are following the guidelines of their own Infectious Diseases Society of America (IDSA) for Lyme are doing much harm by under-diagnosing and under-treating this disease.
The IDSA guidelines are all about signs that can be seen (and your son's swollen knee is gone already), not symptoms that are felt but not seen (headache, fatigue, confusion can't be measured with a blood test).
The infectious disease chief at Westchester Medical helped write the IDSA guidelines.
Hang onto a copy of your son's positive Western Blot. Since he has not been treated with antibiotics, it is a sign that even the IDSA docs cannot deny (though they might try!).
They may want to do a lumbar puncture (spinal tap). I would avoid it. It's invasive, carries risk, might be traumatic on a 4-year-old. And chances are high that it would miss capturing the bacteria, even if they are present in the cerebral spinal fluid.
If you got "lucky" enough to test positive, you would have a sign as proof of Lyme. If you didn't, it might be used against you (by docs and insurance) to say there is no Lyme present.
If it were me (and it was, my boy was 12 when he tested positive), I would seek out Dr. J, as has been suggested, or at least an open-minded MD willing to consult with Dr. J. He knows his Lyme science.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi John.
You've gotten some great answers.
I can feel you and your wife's worry and concern. I'm so glad you're reaching out for answers. It's too bad the lyme situation has to be so divisive, but it is.
My daughter's first symptom was swollen and painful knees and limping. I already had lyme myself, so knew the signs! She wanted no part of my regimen, and tried to blame it on stumbling down a hill! Yeah, right! She tested CDC positive. We live in the woods in an endemic area of northern California.
An ID doc would have (a) probably never tested her through IGeneX, (b) given her a couple weeks of too-low dose antibiotics, and (c) denied that lyme exists here.
My LLMD (a) diagnosed her clinically, (b) backed it up with positive IGeneX tests, and (c) put her on a regimen of high dose amoxy followed by flagyl, which he had specially compounded into a tolerable liquid goop.
Even with all of this, her lyme returned with a vengeance less than a year later in the form of Bell's Palsy. Meaning, the knee involvement definitely foretold CNS involvement, which even the flagyl did not kill.
Oh - excuse me, the IDSA says there's no such thing as bacterial persistence - oops. I forgot!
Anyway, back on the antibiotics we went, and it resolved. Vigilance!
An ID doctor will not know how to take care of your son. An LLMD will.
Good for you for taking charge of your son's care. Keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi John, Welcome to the LymeNet family. So sorry your son has Lyme disease. My grandson has Lyme so I understand how devastating this is. But keep in mind, you are fortunate to have some positive things happening, too.
1. You removed the tick after a short attachment time. 2. Your Pediatrician tested for Lyme disease. 3. The test was positive. 4. With adequate treatment, children have a good prognosis. 5. You've found LymeNet & a lot of families here are familiar with pediatric LD and will share what they've learned from experience.
On the other hand, you are wise to take this seriously & seek the best for your son. This could be one of the most important things you ever do for your child.
Research has shown that some ticks have the Lyme bacteria in the salivary glands, so they are capable of transmitting the disease when they bite. An LLMD told me that a short attachment time would mean fewer bacteria enter the body, so symptoms may not be as obvious early on.
I know of a little girl who tested positve for Lyme. The only change her mother had noticed was that she had started wetting the bed.
It's possible that your child may have had Lyme for a while but his immune system was keeping it under control so no symptoms were noticed. Young children may not mention things that are different or hurt until it gets more pronounced. This tick bite could have added to the problem causing his knee to swell. No way to know for sure how long he may have had it.
What antibiotic (abx) is your son taking? If it's Amoxicillin, Dr B says that a child's dose is 50 mg/kg/day divided into q8h doses.
1 kg = 2.2046 lbs. My pharmacist did the math for me. If a child weighs 35 lbs, that translates into about 800 mg per day. This is more than the usual dose of abx given.
The 21 days of abx prescribed for your son is typical, but LLMDs have learned from experience that this is not long enough.
Page 19 - the "Guidelines" recommend 6 weeks treatment for Early Localized disease (single bull's eye rash with no constitutional symptoms). The swollen knee indicates Early Disseminated disease.
If adequate treatment is not given, some spirochetes will survive, go dormant & the disease will flare up at some time in the future. Similar to the Chicken Pox virus hiding out & later causing Shingles.
The earlier treatment is started, the better the results, but ONLY IF treatment is long enough & strong enough.
I also highly recommend Dr J in New Haven. He is a Pediatric Lyme Dr who has treated over 10,000 children & teens. He also considers Co-Infections that could be present.
My grandson probably had LD about 5 yrs before seeing Dr J. This man deserves the highest honor in the country for what he is doing (& has done) for children with Lyme and other tick-borne diseases.
Since there is a wait to see Dr J in CT, do you think your Pediatrician would be willing to consult with him by phone? This would assure that your son has the best treatment available right away.
An evaluation by Dr J could be done, but I recommend starting adequate treatment now.
Excellent book- "Coping with Lyme Disease" by Denise Lang has a chapter on The Young Child (about 12 pages). On the left, click amazon.com to order the book. Well worth the time & money to get it. Excellent info for those learning about LD and coping with it.
"Everything You Need to Know About LD" by Karen Vanderhoof-Forschner is also an excellent resource. It contains more medical & scientific type info. Ex: meaning of the individual bands on the Westrn Blot test.
Ask as many questions as you want to. Feel free to PM any of us if you prefer.
With your love & concern for your son and the determination to find the right treatment, the prognosis should be excellent.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
John, How was the appt with the infectious disease specialist on the 24th?
Since I haven't seen an update from you, I've been very concerned about your little boy.
I hope we'll hear some news from you. Speaking for myself, I am very worried about anyone who has Lyme, but I am especially concerned about the precious children who have this disease. They have their entire life ahead of them.
As a mother and grandmother, I want all of them to have the opportunity to enjoy good health and a normal life.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
An update: I actually had a very good meeting with the ID doctor. (I know you'll all treat that bit of news with some skepticism.) I paid him his due respect and indicated that I understood that there was a bit of a disconnect between ID doctors and those referred to as LLMDs. I stressed to him that I was very concerned with the possibility that the existing course of antibiotics (prescribed for just 3 weeks) would not be long enough. He indicated that he normally prescribed a 4 week course.
I said that I wanted 6 weeks and he consented. (I appealed to him by asking "what would be the harm?)
One other thing he addressed was my concern with the possibility that even after 6 weeks, the Lyme in his system might still not all be killed.
In response he suggested that we take an Elisa test as a baseline, then take another Elisa test in six months to see if the levels had decreased.
Thanks to all for your concern and for your advice. This was a very stressful time for my wife and I and your guidance is helping us through it.
I'm now well aware of the symptoms, so if we ever see any symptoms again, we'll make sure we treat it as soon as possible.
(I think all this stress has caused a dormant health problem in me to come out. I'm showing symptoms of Fibromyalgia. (http://www.nlm.nih.gov/medlineplus/tutorials/fibromyalgia/htm/_no_50_no_0.htm) We'll see what comes of that. -- I know people might think I'm a hypochondriac, but believe me, I'd have preferred to end this story in the last paragraph.)
Thanks again, John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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posted
John, I'm glad you think the appt. with the ID doc went well but to suggest an ELISA as a baseline waves a red flag for me.
My grandsons have appt. with Dr. J right after Christmas....there was no problem getting them in to see him.
We took grandsons to LLMD who didn't have much experience with children and were not satisfied with the treatment plan.
Dr. J's office will work with us for payment because their insurance doesn't cover....not sure if Dr. J takes ANY insurance. They turn no child away.
I wrote to you in a previous post and begged you NOT to go to ID doc. There are reasons for that. Six weeks of antibiotics will not "cure" your son. If he is showing signs of arthritis, he has had infection for a while now.
Also, wanted to mention that YOU should consider being tested for Lyme. I spent the last 10 years being diagnosed with Fibro, with treatment being just to address symptoms....and the symptoms have become increasingly worse.
When my grandsons tested positive for Lyme I decided that I should be tested. Their mother has Lyme also. We all have had tick bites and crawling ticks and recently I have had increased sensitivity to bug bites of all kinds.
I know of quite a number of families whose members all have Lyme. In my case, at least three generations. Read, read, read the newbie links.
You can become ill with Lyme symptoms very quickly. I haven't been able to work since my diagnosis with Fibro....was sick quite a while before that.
Best of luck to you and your family! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Sounds VERY suspicious that you live in a high risk area and have fibro symptoms. Lyme flares under stress.
If it was my child I would put in a phone consultation to Dr. J's office to ensure he got the right antibiotic and was tested for potential co-infections.
Posts: 117 | From . | Registered: Oct 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son went on 5-6 weeks of amoxi beginning the day he removed his tick and the six weeks later he had mono-like fatigue and low grade fevers, he dropped 10 pounds (anorexia-like) and developed real cognitive problems. It took us months to get his Igenex testing because of the local physician community.
It was six months before he saw an llmd and he has been on abx for 15 months. He is doing extrememly well now.
For me: Swollen knees (hard to go up and down stairs) happened about 6 weeks after my bite.
Please make that appointment with Dr. J. You have received some great advice from the posters above.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
John-
I just read this thread...
How is your son doing? I felt for your wife's fears for your son. There is so much to learn and digest about lyme and scarey possibilities. Fortunately, there are good treatments that work.
My children and I got infected in Rockland County Summer of 2000.
We have lyme, bartonella, and babesiosis. So you can get at least those 3 from ticks in Rockland County.
Make sure to get your son tested blood tests and clinically for co-infections, especially bartonella and babesia. You can read about the Western Blot and also co-infections on the newbie link here.
My kids symptoms (they were 6 and 9 at the time) were subtle initially -fatigue, anxiety, and decreased coordination. It took 4 yrs to get diagnosed--I believe part of problem is that kids are not able to reliably identify and report symptoms. Also, the symptoms wax and wane with the bacteria's reproduction cycle every 4-6wks which can make it real hard to pinpoint what is going on. This long reproduction cycle means after 6wks of abx you may have killed lyme bacteria in system, but not the "babies" which take so long to "hatch" That is why it takes longer courses to wipe it out.
We eventually got quite sick; the kids have not been able to attend school for 2yrs.
You cannot be too careful with this nasty disease. I agree a lyme specialist is needed.
It is a blessing that you are aware that your son has it and are treating it. You did well to push and get the 6wks abx.
Your fibromyalgia is probably lyme. It is very common for more than one member in the family to get it as we live and go the same places.
Our family is getting much better with treatment. We have been treated 2 yrs and continuing till all our symptoms are gone.
Keep us posted. Best Wishes.
Char
[ 07. January 2007, 10:23 PM: Message edited by: char ]
Posts: 1230 | From US | Registered: Nov 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
John,
I wanted to cry reading this thread. John, your kid is unlikely to be 100% in 6 weeks of antibiotics but I hope for your sakes he is one of the few.
In response to your initial questions- 1) Given that his only symptom to date has been a swollen knee (that we can’t absolutely guarantee came from the disease), can I conclude that no other damage has been done to his internal systems?
NO
2) I’ve read about the ability of Borrelia burgdorferi to hide in the brain and cerebral spinal fluid by altering its surface proteins, therefore remaining invisible to the immune system. If this is the case, will the course of antibiotics kill any “hidden” bacteria?
NO they can sequester in tissue. But people can go into full remission when their bodies handle the reduced bacterial load that comes with treatment. Actual eradication is debatable.
3) Is there anything I should be asking the doctor on Tuesday, to make sure my son is well cared for? (Are there any tests that he should be taking to make sure is internal systems weren't affected?)
YES you should quiz the doctor on how much he knows about Babesiosis and Ehrlichiosis the 2 most common co-infections found with Lyme. If your son wasn't tested by him on this initial visit for these two TBDs he knows *nothing* worthwhile about tickborne disease and you should never return to him because his ignorance will ultimately harm your son.
QUOTE (My wife recently learned that the 16 year old nephew of a friend who died of a heart attack had been diagnosed with Lyme when he was 8 years old. -- Of course my wife now thinks my son may suffer the same fate.) UNQUOTE
Yes, this is possible and I do mean to scare you. If you don't get your son proper care now he could pay for it years later. My then 1 year old got Lyme and Babesiosis from me breastfeeding her. She was very ill with an autistic presentation and swollen joints. She was on antibiotics for 3 years and has been completely well for over 4 years now. She hoirseback rides and is a normal kid (except smarter than most, reads at the college level). HOWEVER, it did affect her heart valves and she still goes in, and will continue to indefinitely, to see a pediatric cardiologist and get regular ultrasounds of her heart valves to make sure they don't worsen. If I had not fought tooth and nail to get her the treatment she got, 3 years of antibiotics, 9 months of Mepron for Babesiosis, then god only knows what would have happened to her. She very easily could be one of those kids with a history of Lyme disease who just keel over years later. I web a Lyme Memorial page and I can tell you from fact that this is NOT an isolated event.
BTW, I had fibromyalgia which is 100% gone with Iv Rocephin. It was not fibromyalgia- it was Lyme and Babesiosis and Ehrlichiosis. It is 100% gone now. I am so glad. I hated it!
You should know that certain genetic tissue types are more susecptible to Lyme infection and that if your son gets sick, that is a red flag to all family members that they may be particularly susceptible. Haven't you heard of those people who get bit and bit and bit and are fine? They exist. They have better genes than some of us*)! Take care, Sincerely, Sarah p.s. Doc J in CT advised my doc to treat my daughter and many other local kids who are in complete remission!!!!!!! Doc J is great.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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You have me a bit spooked... If I was the type to believe in signs, I'd be even more scared...
I hadn't received a response to this post in over two months, then received two replies in 14 hours... And coincidently, just this past Thursday I reached out to Dr. J in Ct to get his thoughts on my son's case. (He had a couple of incidents of knee pain that have us worried.)
I wrote Dr. J a detailed e-mail, including the results of his Western Blot. A woman at his office promised that he'd call me this week. My wife and I are pretty stressed out. (Of course, resulting in slight FMS like symptoms in me.) -- I'll speak with Dr. J about the FMS / Lyme possibility when he calls.
My heart is really warmed by the responses of this group, but I'm still scared to death.
Thanks again for the continuing education.
John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John, I'm glad to see your thread "revived!" But I'm sorry your son (and you) are still having problems.
Just to let you know, your son's IGM was probably done at a useless lab that doesn't test all the bands. In later-stage lyme, bands 31 and 34 may show up strongly (in my case I had 31***), yet the lab your doc used doesn't even test for or acknowledge those bands, despite their powerful diagnostic significance. (The ostensible reason is because you might have gotten the failed LymeRix vaccine, which would cause those bands to read positive.)
That's likely why his IgM was "negative." A good lab like IGeneX likely would have concluded differently.
Another thing as has been mentioned by many is co-infections..ID docs likely won't even think of them or will pronounce them 'rare' when in fact --especially in YOUR area - the incidence is really high. Good testing is imperative but if left to ID ducks, it doesn't even occur.
I'm so relieved to hear you're getting in touch with Dr. J.
The good news is that children tend to do REALLY well in treatment and recover much faster and more completely than their aging parents!!!
Keep reading and posting and let us know how things go, 'kay?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi John, I don't know how I missed this thread the first time around. So coming into it late there are a few things I wanted to mention.
I grew up and was infected in Rockland and was many many years to diagnosis.
But that's not the story I wanted to tell. I wanted to tell you about my niece. When she was 5 she had been complaining to my sister that the back of her leg hurt. After days and days of her mom looking at the back of her leg she finally made and appoinment with the pediatrician.
She had been in a wooded area in Pomona for the summer and had lived there most of her life until then.
Anyway, the peditrician took one look and said, "It's her knee, I think she has Lyme" and scheduled an appoinment with a pediatric orthopedist. The same day. They were living in NJ at the time.
The orthopedist took one look and drained fluid from her knee. It was primrose yellow and he said that was a sign of Lyme disease. The synovial fluid tested positive.
She was put on IV Rochephin immediately. Prior to this she showed no signs of Lyme. No one knows how long she had it. She responded brilliantly to treatment.
Anyway, I'm glad to hear you've contacted Dr J. I'm sure that's the best place to take your son. All the above advice you've gotten has been great. there's no point in me reiterating it poorly.
The really good news is little ones respond very well to treatment. I hope Dr J's office can fit you in sometimes soon or work with your local ped until then.
I hope you hear back soon.
Now, about you... Fibromyalgia is a symptom more than a disease. I know you've got a lot on your plate and hope everythign works out well, and soon, with Dr J's office. Your next step after making arrangements for getting your son treated properly is to get yourself to an LLMD and be tested For Lyme and coinfections as well.
No medical training, blah, blah, blah... but I think everyone in Rockland has been exposed, repeatedly. Not everyone shows symptoms immediately and for me at least they were subtle for a long time. It took me a major life trauma and another bite (by fleas actually) to kick this thing into high gear and for me to get myself diagnosed. I had been sick 10-12 years at that point.
Considering where you are, I'd test the whole family and watch everyone like a hawk for symptoms. Am I paranoid, probably, but better paranoid and prepared than not.
Sorry for the long babbling post. I hope all turns out well for all of you.
trueblue
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
John!
I do think that it is a sign that you got our recent responses. I "happened" to come upon your post trying to research "Rockland County" cases. God works in so many ways to protect our kiddos.
I imagine your son is finishing up his 6wks, right?
We have given you so much intense information!
I am sure it is overwhelming. There is a lot to learn.
Kids get better with full treatment-your boy will be fine.
He is blessed to have such conscientous parents.
We can come on strong here because some parents are in denial and don't aggressively pursue treatment. We just hate for anyone, especially a child to suffer.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
John,
Please continue to update us on how things are going.
I was not able to read the entire thread, but In skimming through I did NOT notice ANY mention of
COINFECTIONS!!!!
Has your son been tested for coinfections? These infections are sometimes worse than Lyme and can cause a "simple" case of lyme to become a chronic and life long condition.
You are doing all the right things, really researching and being an advocate. What a wonderful father! You son will be okay with such a great dad.
Please ask about coinfections to Dr. J
Posts: 1950 | From New Mexico | Registered: Sep 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
John,
Yes, I have to agree with trueblue I think it was who said re children- they ALMOST ALWAYS tend to go into complete remission with appropriate treatment. But with Lyme one has to be aware that it can resurface later in life... I actually had it written in my will that were I to be deceased and my children ever to be diagnosed with the following diseases (then specified) that they were to be taken to and evaluated by my old angel LLMD in San Francisco.
I wasn't even aware it was an old post. I have an almost-2 year old and a 9 year old and get on here for 15 minutes a day and just read far too fast!!!!!! Doc J is a sweetie. We had this one little girl with heart valve issues like my daughter but worse- and he used to talk to her at 2 am when she would call him!! He was consulting free with our mutual LLMD in SF for her and she was justifiably freaking out about her kid- but he would take her calls and reassure her- once for over an hour at those wee hours (I cringed for him when she glowingly told me about it!!!! but I know he wouldn't have cringed at all!)- but she AND her daughter are BOTH in complete remission and have been for 7 years or so now- thank goodness!!!!!!!!
I hope Doc J helps- he will if he can. You know, he was in complete retirement when they went after the THEN only real Lyme pediatrician- Doc P-and limited her treating- and he came out of full retirement to continue treating because he knew no one else would!! He is an angel! Take care, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Janet
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