I'm so happy to have found this board! I have been reading it for about a week now and although I'm seriously frightened that I'm going to come off as grossly under-educated re: Lyme Disease, I've decided to dive in in spite of my fears. I know that if I don't, I'll never learn anything more than what I've already read over and over on the internet over the past 3 months, so here goes with my apologies offered to you ahead of time for my ignorance on this subject.
I'll start with a 'cut & paste' which I've written to my local support group website since it gives a fairly good background concerning my daughter's Lyme Disease and a short update at the bottom. Here goes:
"I feel so totally paralyzed with fear over this disease that I've had a very hard time summoning up the courage to write, but here I am finally. My 3-year old daughter has been clinically diagnosed (twice - 2 different doctors) with Lyme Disease. Although her symptoms are not terribly bad, or even that obvious, I can't remember ever going through a more frightening experience in my life. My husband thinks that my obsession over what's happening with our daughter is a bit over the top, and I think he's not paying nearly enough attention to what's going on, so that doesn't make for a happy nor equal partnership between us. He's a bit angry at me for spending all my waking time reading and/or talking about it and I'm more than a little angry at him for sticking his head in the sand. Anyway, here is a summary of what's happened so far with an update at the end:
"My name is Toni and I live in Northern California (SF Bay Area) with my husband, son, and daughter. Earlier this summer, July 23rd to be exact, I extracted a nymph deer tick from my 3-year old daughter's neck (it had been attached for at least 72 hours and 'exploded' upon extraction). I called our HMO hospital and the advice nurse told me not to worry, but to watch her for possible flu-like symptoms or developing rash before calling back to book an appointment with her pediatrician. Well, 27 days later she developed a bulls's eye rash at the site of the tick bite. I called the hospital immediately and got an appt with her doctor that same day. After her doctor listened to our story and saw her rash, my daughter was clinically diagnosed with Lyme Disease in spite of a negative ELISA test. ~can you hear my heart screaming?~ She was put on 500mg of Amoxicillin per day for 21 days. That is the standard RX protocol for Lyme Disease here per our HMO.
"It was a nightmare getting her through those 21 days (actually 22 days since, due to vomiting, I could not admister the medication w/o her upheaving it on the 14th day, so the doctor extended treatment by 1 day) - vomiting, diarrhea, constant stuffy nose, lethargic, etc.. After she finished the amoxicillin (aside from one more bout of vomiting the evening of the last dose) she had no more symptoms and was doing fine, but only 6 days went by before she developed another bull's eye rash at the site of the tick bite.
"Although I called the hospital immediately, it took them 18 days before she was seen to and given an RX of Cefuroxime (Ceftin 400mg per day). The 2nd ELISA test came back negative once again and although the doctor ordered the lab to perform a Western Blot at my urging, the HMO refused her order because they will only perform a Western Blot if the ELISA comes back positive. Today is the 12th day of another 21 day round of antibiotics and she seems to be doing fine so far. No reactions to the medication at all (i.e., no herx?). I don't know if this is a good sign or a bad sign? The rash has almost disappeared again, but I can still see a hint of it especially when she's been physically active.
"I'm now intent on securing my daughter's future medical treatment if - please, NO! - the Lyme Disease reoccurs and we run up against a string of incompetent doctors as, very unfortunately to put it mildly, many of you have. I've seen mention of the IGeneX Lab on the web and have visited their website many times and was hoping that we could have her tested via Western Blots IgG and IgM which would provide us with scientific proof along with her clinical diagnosis to assure that her Lyme Disease will never be dismissed by under- educated/reluctant-to-treat doctors. We're very fortunate in that IGeneX is located only 45 mins away from us. However, after speaking with my daughter's doctor last night, she said that she had found a way to have a Western Blot performed by our HMO, but she feels that it is not really necessary since we already know that she has Lyme Disease. She mentioned nothing about tests for co-infections or the like. I'm not sure she even knows that co-infections are common in Lyme Disease cases. I didn't take up the offer for the Western Blot because I knew that this HMO doesn't do their testing at IGeneX, but rather an 'HMO-friendly' lab in Berkeley, Ca. I wanted to wait to see what a LLMD would say.
"In the meantime, I found the name of a Lyme Disease specialist in the area (Dr. S), but his panel is full and he is not taking on any more patients. I called anyway...begging for help...as I'm in a pretty pathetic state right now. I was referred to Dr. G who is supposedly also a Lyme Disease specialist and is somehow (I don't know how) associated with Dr. S. Has anyone here heard of Dr. G? Good or bad?
"So, we have an appt with Dr. G on Tuesday (10/19/04) for a second opinion. I have photos of both of the rashes my daughter had (1st one and recurring one) to show to the doctor and a log from time of tick bite to the present listing symptoms, etc., that I've observed in my daughter. I feel optimistic about the appt and hope that Dr. G is a good doctor, but how am I to know?
"However, at the same time, I'm feeling very nervous about having lost so much precious time with our HMOs policies. It's now been over 12 weeks since the tick embedded itself & then was extracted. The initial treatment of 21 days of Amoxicillin failed (recurring rash means treatment failed, correct?) and now we're on to a 2nd round of antibiotic treatment - Ceftin this time as I wrote above - to be administered for 21 days. But from what I've read on the internet, 21 days is not enough, am I correct in my understanding of this?
"I'm seriously worrying that we've lost our best chance at beating this disease and have lost that golden window of opportunity to nip it in the bud. Are my worries unfounded? Am I overreacting? Or am I justified in feeling the way I do? Although my daughter's doctor is being as aggressive as she knows how to be with my daughter's Lyme Disease, I'm afraid that it hasn't been enough and that our only chance at catching it early on has run out.
"I apologize if this post is confusing and seems a bit jumbled. My head is all mixed-up and jumbled too, so there is no other way for me to write other than to just spit it out as best I can.
"Thanks for reading and thank you in advance to anyone who can offer support, advice, or whatever. Anything would be so very, very welcome!
"My very best wishes to those of you that are suffering from Lyme Disease. My heart goes out to each and every one of you. {{hugs}}"
UPDATE (10/27/04):
~It has now been over 14 weeks since my daughter was infected.~
We visited Dr. G on 10/19/04 and spent nearly 2 hours with her. My daughter's rash disappeared 2 days prior to the appt., but Dr.G could still feel a raised spot on the skin where it had been. She also mentioned that my daughter had a slightly swollen lymph node on her neck.
The long and short of the visit resulted in a definite clinical diagnosis of Lyme Disease - most likely in the disseminated stage (early/late not known). Ceftin abx treatment was extended to equal a total of 6 weeks. We are now on Day 25 of the Ceftin treatment. Dr.G also mentioned that our geographical region of the U.S. just happens to be the one where neurological damage is more common than other chronic symptoms of Lyme in other regions of the U.S.. Also noted was the fact the my daughter was bitten on the neck which is very close to the brain, so she is possibly (everything is a 'maybe' or 'possibly', etc.) more likely to suffer neurological problems due to the close proximity of the infected bite to her brain.
5 vials of blood were drawn for co-infection testing to be performed at IGeneX lab: Babesiosis B. microti Antibody IgG/IgM; Ehrlichiosis-HME (monocytic IgG/IgM); Ehrlichiosis-HGE (granulocytic IgG/IgM); and Bartonella Henselae-B. henselae Antibody IgG/IgM.
I have NO idea what all of those tests mean other than that she may have co-infections which must be dealt with immediately if present. The doctor had an extra vial of blood drawn in case of a possible PCR test in the future depending on the results of the current lab tests. We will be getting the results in approx. 2 more weeks which seems like a lifetime away to me.
What is a PCR? I've read that PCRs are not very sensitive. Why wasn't a Western Blot ordered? Perhaps because the clinical diagnosis's (both) were evidence enough not to warrant Western IgG & IgM?
So, I don't know how to deal with this. I can't stop thinking/talking/BREATHING the fact that my THREE year old daughter has Lyme Disease. I can't stop reading and re-reading info about the disease for hours out of my days. Can't stop checking the computer 4 or 5 times a day for new messages on a few bulletin boards I've found. Can't stop examining my daughter & her moods, possible symptoms, etc., etc., as if I were holding a magnifying glass over her. I'm trying my hardest to hide my anxiety from her, but kids are not dense. I'm sure she can feel it just oozing out of me.
I dream about Lyme Disease every night.
How to cope?????
Thanks for reading this horribly long 'feeling sorry for myself and my daughter' post. I hope I didn't overstep any lines or boundaries, and if I did, I sincerely apologise.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Prophylacticly treated is what should have been done. Please read DrB's info below.
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
[This message has been edited by treepatrol (edited 27 October 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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lymiecanuck
Unregistered
posted
Hi,
So sorry you are going through this. I can imagine your fear, and the husband thing hit home with me bigtime. It has deeply affected our relationship, and I doubt we will ever recover from here, so I understand completely.
It sounds to me like you are doing every thing you can at this point. I don't know what llmd you speak of, so I can't comment but others may be able to.
I know it is hard, but you need to relax and take care of yourself too, as your daughter needs you, and stress can cause illness in those without lyme, so just know you are doing all that you can.
They say, that the kids get over this better than us. There are other things as in regard to diet etc, that are helpful in beating this. Trying to keep a 3 year old away from junk food may seem impossible, but it will help.
Food allergies too, should be addressed. Many with chronic illness are sensitive to wheat and dairy. Lyme is known for affecting blood sugar levels, so keeping them steady will help too. Smaller meals and more often will be easier on the GI tract, and help keep insulin steady. Lots of fluids is also important to flush toxins and help with herxing.
Someone mentioned the other day, when I was asking about detoxing a 3 year old, that they can have epsom salt baths, and they put a jacuzzi type unit in the tub, if curious ask your llmd if she thinks it safe. It could be very relaxing for her.
Lots of rest, but lots of fresh air too. Walking would be good exercise, I wouldn't have her doing marathons or anything.
Probably most important of all, is a probiotic, and the llmd probably mentioned this. There are also powdered shakes at the health food store, specifically for kids, and has fatty acids in it.
Good Luck Hope this helps Lymiecanuck
[This message has been edited by lymiecanuck (edited 27 October 2004).]
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
heartsick, I am so sorry..This disease is Hell and many, including myself can attest it is hard on marriages and relationships.
You are perfecty correct to worry that you missed the best opportunity..but there is still hope with this still early intervention. My daughter went undiagnosed for over 6 years.
One of my best friends has always worried that I was overly anxious with our worries of this disease but when she found an imbedded tick..She broke her neck to get to me and get some help...She then went to a local Dr and demanded 6 weeks of antibiotics.
The meds may have been too strong for your daughter..We had numerous problems with the strength of the abx and we always had to take probiotics, high billions on the numbers. This helps to protect the stomach..
Good luck..I wish I was in your shoes..As strange as that may sound... I would have loved to have had an early fair chance at fighting this horrid disease. My daughter has tried to commit suicide 4 times.
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I want to say...
your daughter is lucky to have you as a Mother.
Do what your gut says... never mind about your husband... he will come around later... it is his daughter too, and he will thank you for it.
Even if things get messy for you and your husband, keep at it. Give him this site to read, and things will come around. Look for other children on here, and let him then read their story.
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Toni, my heart goes out to you! But please know that you are receiving good treatment for your daughter. Dr. G has a very good reputation, and is able to consult with other Lyme experts if necessary, including an excellent Lyme pediatrician.
quote:Originally posted by heartsickmommy: I've seen mention of the IGeneX Lab on the web and have visited their website many times and was hoping that we could have her tested via Western Blots IgG and IgM which would provide us with scientific proof along with her clinical diagnosis to assure that her Lyme Disease will never be dismissed by under-educated/reluctant-to-treat doctors.
Don't worry about getting a western blot. early in the illness, and especially with having had antibiotic treatment already, even the western blot may not be positive. You have what you need for proof: two doctor verified bull's eye rashes.
I recommend you get copies of your daughter's medical records documenting these rashes and the diagnosis and treatment given. Keep copies of the photos you took (good work!) with the records.
These records are all that you need to document Lyme infection. Unfortunately, NOTHING can document ongoing infection EXCEPT repeated bull's eye rashes or positive PCR tests. Your best bet is a good LLMD, which you have.
quote: However, after speaking with my daughter's doctor last night, she said that she had found a way to have a Western Blot performed by our HMO, but she feels that it is not really necessary since we already know that she has Lyme Disease.
Your doctor is right on this. Even the CDC says that a physician verified bull's eye rash is all that is necessary to diagnose Lyme.
quote: I was referred to Dr. G who is supposedly also a Lyme Disease specialist and is somehow (I don't know how) associated with Dr. S. Has anyone here heard of Dr. G? Good or bad?
Dr. G, as I said, has a good reputation, and good back-up. She works in Dr. S's office, I think one day a week, and in her own the rest of the time.
quote: The initial treatment of 21 days of Amoxicillin failed (recurring rash means treatment failed, correct?) and now we're on to a 2nd round of antibiotic treatment - Ceftin this time as I wrote above - to be administered for 21 days. But from what I've read on the internet, 21 days is not enough, am I correct in my understanding of this?
It may not have been treatment failrure, per say, but incomplete treatment. With a repeated rash, she will need longer treatment than 21 days, with perhaps higher doses, or different meds.
She is, however, still within the range of early treatment, especially because she has had treatment already.
quote:"I'm seriously worrying that we've lost our best chance at beating this disease and have lost that golden window of opportunity to nip it in the bud. Are my worries unfounded? Am I overreacting?
You are still quite early in the illness. Whether or not your daughter will recover quickly, no one can tell. But she stands a very good chance of recovering well with good treatment. Better for you to relax, if you can, as there is nothing else that can be done about the past, and she is in good hands now.
Some people, even with very late disease, have good recoveries. No one knows exactly all the factors that influence it, but your daughter is still young, when she is likely to have good recovery powers. I would focus on that, and then deal with things as they come along.
[QOUTE]Dr.G also mentioned that our geographical region of the U.S. just happens to be the one where neurological damage is more common than other chronic symptoms of Lyme in other regions of the U.S.. Also noted was the fact the my daughter was bitten on the neck which is very close to the brain, so she is possibly (everything is a 'maybe' or 'possibly', etc.) more likely to suffer neurological problems due to the close proximity of the infected bite to her brain.[/QUOTE]
This is only conjecture. While it might lead her to treat more aggresively than otherwise, no one can tell you how your daughter will respond to the illness or the treatment. I wouldn't presume anything based on these comments.
quote:I have NO idea what all of those tests mean other than that she may have co-infections which must be dealt with immediately if present.
Those are all the most common coinfections that are likely in our area. She is doing antibody tests first, because they are the least expensive. the PCRs can be done later if necessary to clarify results. Sounds like she is protecting you financially.
quote:What is a PCR? I've read that PCRs are not very sensitive. Why wasn't a Western Blot ordered? Perhaps because the clinical diagnosis's (both) were evidence enough not to warrant Western IgG & IgM?
A PCR is a test looking for actaul DNA of the organism. The antibody tests, like titers and western blots, are looking for immune system response to the bacteria, not the bacteria itself. A PCR may show positive if the antibody respnse is not showing.
Doctors will often test multiple ways, to get the best picture. She is probably waiting on PCRs because they won't be necessary if the antibody tests come back positive. For the Lyme, you don't need ANY test. The bull's eye is diagnostic.
Try to relax now that your daughter is being treated. If necessary, she will receive treatment for the coinfections as well, but it doesn't sound as though she has life threatening symptoms, so a few weeks wait will be OK.
You've gotten some great advice here. I just wanted you to know that you and your family are in my prayers.
You need to go with your "Mother's Heart" - meaning go with your gut, you very right in treating this seriously.
You are on the ball in catching this early. I know it is stressful, but don't lose hope - you're ahead of the game because you already have your daughter under an LLMD's care.
It's interesting to me, because I was 3 years old when I was infected - a long time ago. I had the rash but the doctors didn't know what it was.
It was back when lyme wasn't even thought of. I didn't get the proper treatment and have had years of bad health, and just only last year got the diagnosis of lyme disease.
Don't waste your time and energy on other doctors who don't know much about lyme. You need to treat it properly so your daughter doesn't have to deal with this later in her precious life.
This site is a great source of support and information. Don't ever feel like any question is stupid or that you don't want to bother us.
I'm glad you found us - I just wish it wasn't for the fact that your little one has lyme.
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
Welcome to Lymenet! I am sorry that you had to find us because your daughter is sick. But this is a terrific group of people!
I read the replies to your message, and I think you've rec'd some great advice here. To me, reading your story, I find it just incredibly hopeful that your daughter is seeing a good Lyme Literate doctor and is on antibiotic treatment. Those are THE most crucial things -- and you're *there* already!
AND you've had her tested for co-infections, which many of us didn't know about for years.
I think that it is good advice to take care of yourself and try not to worry. She is under the care of a good Lyme doctor and is receiving treatment. As bizarre as it sounds, you are in an amazingly good position. You have reached the point many of us struggled for years to get to -- and WE'RE getting better, so she will, too!
There is a topic on this list somewhere called Success Stories. Have you found that? Lymenet folks - could you point out where that is?
Also, as bizarre as it sounds, I think you are still in a good position in terms of the time window. She has not been struggling with finding a diagnosis for years, and been going untreated for years!
As a sort of personal aside, I have found that worries in a relationship work so that if one person is worrying a lot, the other one knows they don't have to. I can't explain this very well. Maybe your husband can be cavalier about it all because he knows you are doing the worrying for both of you. (I bet he'd be anxious if it was just him).
I am sorry if this is coming out wrong, or if I'm out of line. Sometimes I just find that if I can back off from worrying (or expressing it) then the other person feels able to voice the interest or concern that I had wanted them to share. It's paradoxical.
But, of course, being a mom, one is wired to worry about a child.
But the truth is, she is in good hands!!
I'm betting your daughter will be just fine.
Please take heart; don't be discouraged. Give the antibiotics time to work. It is hard to be patient with this illness. Walks with her sound like good advice, too, when she's up to them. How wonderful to see life through the eyes of a 3 year old. I know a couple of 3 year olds who are very into "make believe."
If you spent some time doing non-medical things with her, I bet that would be good for both of you. What kinds of activities is she up to?
If you kept a kind of structured symptom diary, would that help take away the pressure of worrying about her every minute?
Please let us know how you and your daughter are doing.
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Heartsickmommy,
I embrace you.
I could feel every fiber of emotion as you detailed yourself...from your husband to your child's safety, to your own sanity and apologetic behavior.
First, you are so not alone.
You are reaching out to sympathetic, understanding ears. For those that feel they know what your dealing with, it's very complicated and warrants extreme emotion. Once that is ackowledged(and revisited often), it's time to get going. I'd say you are off to one &*^(*&^(*& of a start. Pat yourself on the back right now.
You are in touch with the best labs, although there are deficincies in every test. Today, the tests are limited. If you don't know why, read the newcomers literature, otherwise I would be happy to explain what I know.
A second opinion you have gotten. Yes, you are one of the fortunate to develop a rash and catch it relatively quick. With respect to therapy you may want another opinion from a leading Lyme pediatrician, Dr. Charles Jones in New Haven, Conn. Just call and explain the deal. Ask about the meds. See if Doc J agrees. It's a good backup. Be sure to include possible coinfections w/r/to Lymes and current medications.
You are tracking it correctly, and on top of it. Please don't over-analyze sporadic growth phenomena. Our kids are changing so quickly. Doc J is a Peds. He is good at distinguishing normal growth challenges from Lyme abnormality.
Go there next. It's most of the way there. Then come back to share notes. What lies between there and here is so individual. I mean, there is so much to consider for your child's prognosis....bacterial strain, immunity, co-infections, frequency of exposure. Don't generalise and think the worst.
Exercise your daughter. Give her good nutrition. These are critical for immunity. I have come full-circle, and now know how crucial this really is. Pray.
Spirituality unfolds in the needy. I know God listens. You are doing all you can do.
Know that and be strong. Try not to let your mind get away from you... t's a lonely, desperate, awful place. I'll meet you there if I must....it wont be a first. But lets first try problem-solving and solutions-
Hugs,
2Roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Sounds like you are in good hands with your current doc. Sorry it was so aggravating getting there.
Not that you need anything else to think about at this point, but when the test results come in, might want to ask the doc about the WA-1 type of babesia. It is known to be in California and will not produce a positive result on the Babesia microti antibody test. Your daughter might need to be tested for that one also at some point in the future. Taking all that blood out of a small child at one whack was probably also a consideration.
Posts: 8430 | From Not available | Registered: Oct 2000
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
hi,
If you go into the general support section...
I sent the success stories to the top...
Please remember this is just a few of the people who have gotten well....
I have seen many people come and go on this board....
Also please remember many of us are in the shape we are in because many years went by before we were diagnosed and/or we were misdiagnosed or recieved inadaquate treatment.
Dont worry about the three months.... you have a good llmd now and a diagnosis... that seems to be more than half the battle...
posted
I'll post again soon. I'm so sorry not to have thanked you all right away. What an amazing group of compassionate people I've found here! You all have my deepest gratitude.
I'm still working my way through the links given to me above. Spending every spare moment that I have reading, researching, trying to get this all straight in my head, but it is so difficult.
I'll give you an example of where I started out in my head about Lyme Disease:
My very first question to myself after I extracted the ticks from my daughter's neck & ear (yes, she had a total of 3 bites) was:
"I wonder if humans can get Lyme Disease?"
Can you believe I didn't even KNOW???
So, I know I've come a long way over the past few months, but I have so much further to go. It's all so overwhelming - the information and horrible reality of the disease - that I'm pretty much paralyzed as far as being able to write, talk on the phone, go to the grocery store, etc.. I mostly am sitting here in front of the computer reading and reading and reading....
My dh is kind of wavering in and out of the "I'll put it in my face" thing. For instance, this morning he ordered 2 books on Lyme and also the "ILADS Guidelines for the Management of Lyme Disease", but only after a very ugly fight between us last night. I hope he continues to help me to help our daughter, but is yet to be seen.
I'm in and out of crying spells a lot, but never in front of my daughter.
Will write again soon as dd and dh are walking in the dorr right now....
Reading your post, I remember feeling the same way three years ago. My Abigail is now five, and is in Kindergarten. She ice skates, and lives a normal life. She was only given two weeks of amoxicillin at first. I panicked, like you, and got educated, like you.
Good for you.
We got her tested for coinfections, and found out she had babesia and erlichia.
I can tell you this: It's not the end of the world. I know it feels like it, but it's not. Don't feel bad about obessing, you're a mom-it's your job, and it's saved your daughter's quality of life, most likely.
Abigail is being treated by Dr. J in CT. We live in Houston, but decided after dealing with the "top minds" (I use the term loosely) here, we weren't fooling around with this. She was off all abx for years, and just recently had to go back on. Not a big deal in our house, she's used to it.
That's not to say that's what's going to happen with your daughter- you caught it early- that's wonderful!!!! Thank God for that rash!!!! It's a horrible, but wonderful thing to see-
Hang in there, and ask questions here when you need to. There are many moms here who have been where you are, and we are happy to lend an ear. =)
quote:Originally posted by heartsickmommy: Hello everyone.
I'm so happy to have found this board! I have been reading it for about a week now and although I'm seriously frightened that I'm going to come off as grossly under-educated re: Lyme Disease, I've decided to dive in in spite of my fears. I know that if I don't, I'll never learn anything more than what I've already read over and over on the internet over the past 3 months, so here goes with my apologies offered to you ahead of time for my ignorance on this subject.
I'll start with a 'cut & paste' which I've written to my local support group website since it gives a fairly good background concerning my daughter's Lyme Disease and a short update at the bottom. Here goes:
"I feel so totally paralyzed with fear over this disease that I've had a very hard time summoning up the courage to write, but here I am finally. My 3-year old daughter has been clinically diagnosed (twice - 2 different doctors) with Lyme Disease. Although her symptoms are not terribly bad, or even that obvious, I can't remember ever going through a more frightening experience in my life. My husband thinks that my obsession over what's happening with our daughter is a bit over the top, and I think he's not paying nearly enough attention to what's going on, so that doesn't make for a happy nor equal partnership between us. He's a bit angry at me for spending all my waking time reading and/or talking about it and I'm more than a little angry at him for sticking his head in the sand. Anyway, here is a summary of what's happened so far with an update at the end:
"My name is Toni and I live in Northern California (SF Bay Area) with my husband, son, and daughter. Earlier this summer, July 23rd to be exact, I extracted a nymph deer tick from my 3-year old daughter's neck (it had been attached for at least 72 hours and 'exploded' upon extraction). I called our HMO hospital and the advice nurse told me not to worry, but to watch her for possible flu-like symptoms or developing rash before calling back to book an appointment with her pediatrician. Well, 27 days later she developed a bulls's eye rash at the site of the tick bite. I called the hospital immediately and got an appt with her doctor that same day. After her doctor listened to our story and saw her rash, my daughter was clinically diagnosed with Lyme Disease in spite of a negative ELISA test. ~can you hear my heart screaming?~ She was put on 500mg of Amoxicillin per day for 21 days. That is the standard RX protocol for Lyme Disease here per our HMO.
"It was a nightmare getting her through those 21 days (actually 22 days since, due to vomiting, I could not admister the medication w/o her upheaving it on the 14th day, so the doctor extended treatment by 1 day) - vomiting, diarrhea, constant stuffy nose, lethargic, etc.. After she finished the amoxicillin (aside from one more bout of vomiting the evening of the last dose) she had no more symptoms and was doing fine, but only 6 days went by before she developed another bull's eye rash at the site of the tick bite.
"Although I called the hospital immediately, it took them 18 days before she was seen to and given an RX of Cefuroxime (Ceftin 400mg per day). The 2nd ELISA test came back negative once again and although the doctor ordered the lab to perform a Western Blot at my urging, the HMO refused her order because they will only perform a Western Blot if the ELISA comes back positive. Today is the 12th day of another 21 day round of antibiotics and she seems to be doing fine so far. No reactions to the medication at all (i.e., no herx?). I don't know if this is a good sign or a bad sign? The rash has almost disappeared again, but I can still see a hint of it especially when she's been physically active.
"I'm now intent on securing my daughter's future medical treatment if - please, NO! - the Lyme Disease reoccurs and we run up against a string of incompetent doctors as, very unfortunately to put it mildly, many of you have. I've seen mention of the IGeneX Lab on the web and have visited their website many times and was hoping that we could have her tested via Western Blots IgG and IgM which would provide us with scientific proof along with her clinical diagnosis to assure that her Lyme Disease will never be dismissed by under- educated/reluctant-to-treat doctors. We're very fortunate in that IGeneX is located only 45 mins away from us. However, after speaking with my daughter's doctor last night, she said that she had found a way to have a Western Blot performed by our HMO, but she feels that it is not really necessary since we already know that she has Lyme Disease. She mentioned nothing about tests for co-infections or the like. I'm not sure she even knows that co-infections are common in Lyme Disease cases. I didn't take up the offer for the Western Blot because I knew that this HMO doesn't do their testing at IGeneX, but rather an 'HMO-friendly' lab in Berkeley, Ca. I wanted to wait to see what a LLMD would say.
"In the meantime, I found the name of a Lyme Disease specialist in the area (Dr. S), but his panel is full and he is not taking on any more patients. I called anyway...begging for help...as I'm in a pretty pathetic state right now. I was referred to Dr. G who is supposedly also a Lyme Disease specialist and is somehow (I don't know how) associated with Dr. S. Has anyone here heard of Dr. G? Good or bad?
"So, we have an appt with Dr. G on Tuesday (10/19/04) for a second opinion. I have photos of both of the rashes my daughter had (1st one and recurring one) to show to the doctor and a log from time of tick bite to the present listing symptoms, etc., that I've observed in my daughter. I feel optimistic about the appt and hope that Dr. G is a good doctor, but how am I to know?
"However, at the same time, I'm feeling very nervous about having lost so much precious time with our HMOs policies. It's now been over 12 weeks since the tick embedded itself & then was extracted. The initial treatment of 21 days of Amoxicillin failed (recurring rash means treatment failed, correct?) and now we're on to a 2nd round of antibiotic treatment - Ceftin this time as I wrote above - to be administered for 21 days. But from what I've read on the internet, 21 days is not enough, am I correct in my understanding of this?
"I'm seriously worrying that we've lost our best chance at beating this disease and have lost that golden window of opportunity to nip it in the bud. Are my worries unfounded? Am I overreacting? Or am I justified in feeling the way I do? Although my daughter's doctor is being as aggressive as she knows how to be with my daughter's Lyme Disease, I'm afraid that it hasn't been enough and that our only chance at catching it early on has run out.
"I apologize if this post is confusing and seems a bit jumbled. My head is all mixed-up and jumbled too, so there is no other way for me to write other than to just spit it out as best I can.
"Thanks for reading and thank you in advance to anyone who can offer support, advice, or whatever. Anything would be so very, very welcome!
"My very best wishes to those of you that are suffering from Lyme Disease. My heart goes out to each and every one of you. {{hugs}}"
UPDATE (10/27/04):
~It has now been over 14 weeks since my daughter was infected.~
We visited Dr. G on 10/19/04 and spent nearly 2 hours with her. My daughter's rash disappeared 2 days prior to the appt., but Dr.G could still feel a raised spot on the skin where it had been. She also mentioned that my daughter had a slightly swollen lymph node on her neck.
The long and short of the visit resulted in a definite clinical diagnosis of Lyme Disease - most likely in the disseminated stage (early/late not known). Ceftin abx treatment was extended to equal a total of 6 weeks. We are now on Day 25 of the Ceftin treatment. Dr.G also mentioned that our geographical region of the U.S. just happens to be the one where neurological damage is more common than other chronic symptoms of Lyme in other regions of the U.S.. Also noted was the fact the my daughter was bitten on the neck which is very close to the brain, so she is possibly (everything is a 'maybe' or 'possibly', etc.) more likely to suffer neurological problems due to the close proximity of the infected bite to her brain.
5 vials of blood were drawn for co-infection testing to be performed at IGeneX lab: Babesiosis B. microti Antibody IgG/IgM; Ehrlichiosis-HME (monocytic IgG/IgM); Ehrlichiosis-HGE (granulocytic IgG/IgM); and Bartonella Henselae-B. henselae Antibody IgG/IgM.
I have NO idea what all of those tests mean other than that she may have co-infections which must be dealt with immediately if present. The doctor had an extra vial of blood drawn in case of a possible PCR test in the future depending on the results of the current lab tests. We will be getting the results in approx. 2 more weeks which seems like a lifetime away to me.
What is a PCR? I've read that PCRs are not very sensitive. Why wasn't a Western Blot ordered? Perhaps because the clinical diagnosis's (both) were evidence enough not to warrant Western IgG & IgM?
So, I don't know how to deal with this. I can't stop thinking/talking/BREATHING the fact that my THREE year old daughter has Lyme Disease. I can't stop reading and re-reading info about the disease for hours out of my days. Can't stop checking the computer 4 or 5 times a day for new messages on a few bulletin boards I've found. Can't stop examining my daughter & her moods, possible symptoms, etc., etc., as if I were holding a magnifying glass over her. I'm trying my hardest to hide my anxiety from her, but kids are not dense. I'm sure she can feel it just oozing out of me.
I dream about Lyme Disease every night.
How to cope?????
Thanks for reading this horribly long 'feeling sorry for myself and my daughter' post. I hope I didn't overstep any lines or boundaries, and if I did, I sincerely apologise.
My best to you all,
Toni
Mommy,
I am also from California. San Jose to be exact. Tested for nearly three years for just about everything before diagnosed with lyme by a doc in Carmel Ca. Just wondering how your daughter is doing? Hope she is recovering well.
Also, wanted to ask you about what Dr. CG said about co-infections in this area if you dont mind. What did the lab say and what treatment is she on?
Our LLMD only mentioned that here on the West Coast, neurological problems are more common than anything else with Lyme and co-infections.
Take that with a grain of salt though, since I've been told that her opinion on that is merely conjecture and should not be mistaken as absolute.
Thanks for asking about my daughter. She seems to be doing fairly well, but Lyme is very strange. Just when you think it might be going away, symptoms will pop up again out of nowhere. So, it's like riding the ocean waves - for a few days my daughter will be back to her old self and then...BAM...she'll have multiple symptoms show up again that might last for a few days before dissipating once more.
I'm so sorry that you've been dx'd with Lyme, but you have found a wonderful place to seek info here on Lymenet. Had it not been for this place, my daughter would probably be WAY worse off than she is now.
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