It was almost 3 years ago when my then 4 year old son, Jack, was diagnosed with Lyme. I took him to see Dr. J in CT about 2 1/2 years ago. He was on ABX for over a year. Dr. J said that in his opinion, the Lyme was gone. That was about 1 1/2 years ago.
BUT... My wife has a classic case of Health Anxiety (projecting out the worst possible outcome from any benign symptom - also known as hypochondria.) She fears that the Lyme has been hiding intracellularly and that he is really not clear of the disease. She attributes any ache or pain to having been possibly caused by the hidden Lyme. She fears that this hidden Lyme is wreaking havoc within my son's body and that he will, one day fall very sick.
Last night Jack mentioned that his jaw bothered him. It was an instant of discomfort that didn't reoccur. He was able to open and close his mouth without pain. -- Yet, my wife and I spent 2 hours talking about it. She was shaking uncontrollably with fear. (She reminded me of how my old dog would shake during a thunderstorm.)
She's read dozens of books about health anxiety and been to see a therapist. Nothing seems to work for her. The only thing that ever works is a definitive statement of clear health. -- As we all know, getting one of those when talking about Lyme is pretty difficult. (There always seems to be that ``maybe'' out there.)
My heart goes out to my wife. I've spent countless hours trying to explain the disease to her and allay many of her fears. -- But, I'm in over my head with this one. Again, the only thing that ever helps is fact, which is hard to come by with Lyme.
I'm open to any and all advice.
That said, I will ask a specific question.
Can anyone direct me to anything definitive that help us know with any level of certainty that Jack is free of the disease?
Also, can anyone share any information about how a previously ``hidden'' infection might rear its ugly head again?
Sorry to burden you all with this. If you have the time to write, thanks... If not, thanks for reading.
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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I am a worrier too, having 3 children with lyme. Sometimes my fears escalate, and I know I am being a bit unreasonable. Getting them well is my number one priority.
I am sorry if I am not much help,and please don't take this the wrong way. Has your wife been tested for lyme and co's? My unrational fears have gotten better as I am getting better. I am not diagnosing, just saying that it could be a lyme symptom too.
I am so happy for your son that he has regained his health.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry your wife suffers like this. Fear is hard to deal with? Has she even had Lyme herself to first-hand understand the horrid aspects? I'm just curious what brought it about in the first place. I find personally with whoeevr I run into, if they haven't had it, it doesn' shake them up much - AND that includes my wife!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
john,
no advise since i'm not a parent of a child with lyme, but stopped by to just comfort you ok best wishes...
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posted
Sadly, there is no way to prove complete absence of Lyme from a person, and in some way it may not matter - being free from symptoms is what really matters most. Opinions vary on whether Lyme persists without symptoms or not, but in the end many things can effect the health of our children - some we know about, some we do not.
If your child is happy and healthy now, take reasonable precautions to keep him that way and enjoy life today. Tomorrow his health may be good or bad and you have no way of knowing which - but you do know that whatever time was spent today worrying about tomorrow could have been spent doing something that would be a fond memory no matter what tomorrow brings.
Lyme may or may not steal tommorow, but anxiety over Lyme can definitely steal today.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
What a horrible way to live....always in fear and full
Of anxiety of things that we really can't control.
My heart goes out to your wife.
I have two small children who are in remission with Lyme.
Will it occur?
I hope and pray not, but how can I possibly guaranty it?
What if they get bitten by a tick?
I can only do my best and that is all you and your wife can do.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Alright....I apologize up front.
I too have been under a lot of stress, and the two glasses of wine I have just consumed I shall openly admit, before proceeding on.
It is not good to live a life in fear. However, I have done and do.
That being said, if your wife is the primary caregiver and mother of your child then you must pay credence to what she says.
This illness in a young child is extremely hard to sort out.
I don't think there's a mother on this board that would deny going with a mothers gut instinct.
There's nothing worse then having a problem, but being the only one that sees it....."can I get some help here."
Time.....wretched time.
You can wait, and if she's right it will get worse. That will be your affirmation.
Dr. J is awesome, but for me, it has always been my responsibility to work as a team with him. I too am his eyes.
Make a calender of symptoms as best you can. What you say to him (or not say), is very important.
If your wife is worried....in my opinion, there could be something going on.
Let me say that the first symptom my husband had was jaw pain. He does not frequent the doctor. When he had trouble eating, he did.
Kids are more resilient.
Don't make a problem, but take nothing for granted-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
PS- No, there is not a definitive test.
That is why it is also a symptom based diagnosis.
A western blot from Igenex is a good start...but that depends on length of illness. When your body has been infected too long and without current therapy, it stops producing antibodies....foreign isn't so foreign anymore.
PCR's (finding the infection in the blood or body tissue) are a crap shoot. Pain in body tissue resulting in a biopsy is more helpful....pinpointing the area.
There are coinfections also to consider.
It is complex....know that.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Thanks to all of you for your replies, but as I feared, help on this topic is going to be hard to come by.
I know that there is no definitive test to decree that Jack is clear of the disease.
To answer or comment on a number of your questions and statements... * My wife has never had Lyme. Yes, she's been tested. * I know about co-infections. Jack's been tested by IGeneX. -- Very conclusively positive with Lyme 2 1/2 years ago and negative for co-infections. * I know that Lyme can lay dormant. * Getting my son healthy and keeping my children from getting sick is absolutely my number one priority. As I've said to my wife, this is the most important thing I will ever do in my life. - To that end, we have cleared our property of any leaf litter or loose rocks. We pay a company recommended by Dr. J thousands of dollars per year to come to our home 4 times a year and spray our property and 40 feet into the nearby woods. We also have them place bait boxes on the property to kill the ticks on the neighboring chipmunks. -- We spray the kids with Deet before they go out and give them nightly tick checks. * When Jack was experiencing symptoms I kept a thorough chart of all symptoms (both mild and severe.) Dr. J was always impressed with the detail. It helped him with his diagnosis and treatment. * In most occasions I trust my wife's motherly intuition. That said, her classic hypochondria makes her intuition with regard to Lyme irrational. (The true definition of hypochondria is not that one makes up symptoms, but that one attributes the worst possible cause to any minor ache or pain.) * Jack is an incredibly active, seemingly healthy boy. He goes to Karate class 3 times a week, plays T-Ball, Basketball and Soccer. He's not only a very good athlete, but he also does very well in school. His last report card was very good and showed improvement over the previous period. He's a good big brother and a very cheery kid.
THERE IS NO REASON TO THINK THAT HE STILL HAS LYME!!!
As I told my wife, I WILL NOT miss a symptom, but I also will not be paralyzed by fear. My poor wife is wasting her life with worry.
I appreciate everyone's time, but as I feared, there's not an easy answer for how to get my wife to live her life without the constant fear that the absolute worst is around the corner.
I'll end with one question.
In the very unlikely chance that the Lyme is laying dormant intracellularly, would I be correct in saying that it is not presently causing harm to his joints or organs? I would think that it would need to go extracellular to start wreaking havoc, and that it would be then (when it emerges) that we would start to see symptoms. (Of course, if that were to happen, then we would get him treated, and hopefully rid him of the bug.)
Again, thanks to everyone for the replies.
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Just a thought or two about what you wrote back.
I believe my children to be in remission.
Right now they show no signs or symptoms of an active infection.
I do like you do.....keep vigilant and look for any possible symptoms.
I don't spray my 8.5 acres but am cautious about outside time.
Right now it is the horse flies that scare me the most.
Co-infection testing is not accurate....not even from Igenex.
So, don't possibly disregard subtle symptoms like night sweats,
Or complaints of headaches and such.
Which I am sure you don't or won't.
I hope and pray that your son is free for life.
I also hope that your wife does well with her therapy.
You are one very special Dad and Husband.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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My fervent hope for you both is that all three of those children are in a "permanent remission".
John, you are a special dad and husband.
It is not clear to me whether or not your wife is in therapy to deal with her fear, but I wish you both well with that.
Just a suggestion: perhaps a lyme literate therapist?
(We all know how hard it is to get others to understand the seriousness of this disease. To have a therapist that belittles her concern will do no good.)
Best of Luck to you and your family.
Posts: 797 | From New York | Registered: Feb 2008
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posted
Interesting thought Carly... A Lyme Literate Therapist... I'd love to know how to locate one of those.
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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Yes, there are lyme literate therapists. There's actually a post over in the medical section with a letter from a very well known (in the lyme community) therapist. (I think the poster was jbral).
Try running a search through the LDA site, to get contact info. There are also a few social workers/therapists/counselors/psychologists that post here.
As to your wife's anxiety, I can totally relate. My family's lyme experience has pretty much turned our lives inside out. In the past two years, we have found that two out of four definately have lyme, one has coinfections and probably has lyme, and the youngest (thank God) appears to be healthy.
We have lived through lyme/bart rages, depression, that horrible impotent feeling of seeing your child in pain, and you can't make it stop, the frustration of trying to get extended family, friends and school to understand that your child is sick, and that it isn't going away in just a few days (or weeks or months).
This experience is traumatizing, and I will probably always worry about it coming back and ripping us up again.
BUT, as you said, life does go on, and we cannot function in a constant state of anxiety. So, we take every precaution that we can to avoid reinfection.
We are vigilant for signs that our child (and each other) are relapsing, or that we are deteriorating from our current status of almost all better, and we are not afraid to call/see/tell our dr. anything suspicious that we observe, because as far as we know, there is no gaurantee that this illness is beat.
If this isn't enough for your wife to feel safe, then by all means, find a therapist, or (if this will help) call Dr. J, and let her express her conerns. I'm sure she isn't the first mom who has ended up with post-lyme anxiety!!
Best of luck to you and your family, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
Thank you carly and lymemommy... I took your advice and located a lyme literate psychologist. I spoke with her 30 minutes ago. I like her. I've mentioned it to my wife, who I hope will give her a call today.
Thanks to all!
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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bettyg
Unregistered
posted
john, glad to read you made progress and called; now hopefully your wife WILL CALL back to schedule an appt. hugs
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