posted
My 4 yr. old son's Igenex results are as follows:
IGM:
41 IND
IGG:
31 IND
34 IND
39 IND
41 POS.
My husband and I are fighting because he wants him to see an infectious disease duck.
I have tried to give him things to read about lyme, but he always refuses saying he knows about it.
I told him that I would rather divorce him , than watch my baby get sick from this disease.
Right now the baby is acting fine except always having minor delays , recurring bronchitus and red pinna of ears when sick.
Not only am I in a battle for myself to get well, but ignorant people like my husband and mother in law, always trying to dispprove lyme.
Do you all know if LLMD treat w/ little symptoms. Mine said we will talk I will see him in a week. I know he got this from me I believe I got lyme atleast 6 years ago and he is 4.
Please if I could have your oppinions I am at my witts end.
ALL MY BEST Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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posted
I recently took my 8 yo son to the eminent Dr. J. The entire family has lyme/babs and is sick. My son had a tick bite in 05 resulting in a HUGE em rash, was treated for 6 weeks on amox. He's had 4 more tick bites--can you believe? He was having foot pain and some behavioral issues.
Long story short-Dr. J said if he wasn't having FATIGUE he didn't need treatment. We are not treating despite his positive lyme blood tests because he shows signs of prior infection but he's in good health.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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bettyg
Unregistered
posted
mama,
thank you for coming along and sharing your children's story with teresa!! since mama has gone to the best there is in kids llmds; trust what dr. j said please!
i have no kids; no knowledge, but up we got for early am visitors here! best wishes to you both and your kids!
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So sorry to hear about the conflict in your house. A united front is so needed, and I went through this myself. It took some time, but he did come around.
How often is your son ill with the recuring bronchitis? I would think that the frequency of illness is important here.
You mention the developmental delays, and I understand your concern. He is at an age when you can see school is just right around the corner. I would think that it would make sense to address this before he is school age.
Do you think that if you called Dr.J's office that they could give you some insight? There is nothing to lose in doing so.
Let me know if I can be of any help to you.
Best wishes
-------------------- 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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posted
Teresa, I am so sorry, as I know exactly how you feel!!! I infected my 14 year old son during pregnancy; he was just diagnosed in Jan. 08! It is hard enough to deal with this desease yourself, and then to learn that your child has it is heartbreaking.
May I ask how Lyme, and/or any co-infections have affected you? How symptomatic are you?? The reason I ask is that if you are disabled, as I am, your husband may be in denial??? He may be very scared? Of course, with that comes anger.
I will NEVER understand why so many, especially loved ones rufuse to fully believe in the diagnosis of Lyme!!??? I have dealt with the same thing. It truley baffles the heck out of me!! Forgive me but in my opinion, it is pure ignorance! I don't mean that in a malisious way, it is just lack of knowledge. The unwillingness to research it!!
Have you tried asking your husband and in-laws to watch some of the videos??
Mama----I'm sorry as since I can't look at your post while writing this; I've forgotten the details of your post.
Your son's symptoms of some behavioral issues and foot pain; was this prior to the Amox.??? I ask because by son has had issues with learning disabilities, anger, deppression, anxiety, eventually developing severe mood swings, etc...
He was a very happy baby, but had severe lung issues; bronchitis and asthma. He did also have hypersencitivity to smell, noise, taste, light and touch. He later developed behavior issues. As he has gotten older, this has gotten MUCH worse!!! He now carries the Dx. of ADD, Anxiety disorder, and Bipolar. After being diagnosed with Lyme, we now know that this has been the cause all along!!
I REALLY wish I knew then what I know now!!! If he had been diagnosed and treated sooner; he would not be dealing with all of this now! He has such a hard time with his moods, organizing things which greatly affects him in school and creates SO MUCH ANXIETY AND ANGER IN HIM!!
PLEASE HAVE YOUR HUSBAND AND IN-LAWS READ THIS. I realize that each case is differant depending on what types of bacteria is present. I would have him tested for co-infections also! It is my experience with SEVERAL INFECTIOUS DISEASE SPECIALIST that they are not real familiar with the latest research in lyme or co-infections. That is not to say that there are not exceptions, but I have yet to find one!
I am extrememly caustious when it comes to my children. Overly some would say!!! So I do understand your concerns; I REALLY DO! However, because of the severity of my herx reactions, etc..., I put off some treatment for my son. HUGE MISTAKE!!!! HUGE!
His symptoms have progressed as he's gotten older. Please try to understand that because of what your wife has been through; she is terrified for your son!! It is immpossable to really understand how it feels to fight a chronic illness unless you've been there; to no fault of your own. IT IS MY WORST NIGHTMARE THAT MY SON WILL BECOME ALMOST COMPLETELY DISABLED AS I AM!!!
His symtoms have progressed over the years. These are his current symtoms; muscle and joint pain fatigue-----no matter how much sleep he gets, he's always tired. Headaches, some are very severe Chronic sinusitis Asthma Legs ache and are weak-----he does his best to push through this, but it is very frustrating for him.
FOR ME, THESE ARE THE MORE FRIGHTENING SYMPTOMS!
Loss of control with anger
frustration----what is so heartbreaking is that he will be in tears, angry and I can hold him and ask him what's wrong. His responce is always, "I don't know mom!!! What's wrong with me????"
Severe mood swings
very difficult to follow more than 2 dirrections at a time. Creates so much frustration for him during school.
Anxiety----he get's so nervous and doesn't understand why.
He is taking 3 differant meds. for depression, ADD and bipolar. If we had discovered that it was due to Lyme, and had him treated much sooner; he may not have ever needed any of these meds. Just FYI--this is how caustious I am. All of these meds. where reccomended for 4 years before I finally HAD to agree to them! He had gotten to the point where he didn't want to go on anymore!!! This is when I broke down and knew I had no choice but to put him on these brain altering medications.
I am NO expert by any means; this is only my personal experience. In no way is all of this meant to frighten you or your husband! I'm sorry if it does. However, it is information that I wish soooo badly I had when he was younger.
You, and your family will be in my prayers!!! Hang in there, I know how hard it is!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
Dear Scared - you don't mention if your son
is on abx. I hope he is. Like you my oldest,
surely born with lyme and co. and not dx until
she was a freshman in HS, was misdiagnosed with
ADD, and depression. Now, 3 years later (still
being treated) she has most of her life back.
Even when these children are born with lyme
there is still hope. Hope however is not enough,
abx are needed - and long term.
-------------------- 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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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Teresa~
I would suggest getting your son tested for Chlamydia Pneumonia, or other lung issues due to his chronic bronchitis.
His western blot tests do not indicate lyme disease in my opinion. Also, Dr. F, a well known lyme doctor at Columbia, throws out all IND bands and does not count them. Thus your son has one positive band...band 41, which everyone tests positive for.
Look to other places besides lyme for a diagnosis.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Is that really true about DrF.???????? Do you mean that he would not treat clinicly or empiracally for lyme and coinfections? That just does not sound right.
Band 41 pos (how many ++++????) with 31 and 39
for me this would be highly suspicious of lyme.
Chronic bronchitis, sinus infections, ear infections, especially in children, are lyme symptoms.
I agree that you need to rule out as much as possible. But if this little boy is ill and showing symptoms, as a parent I would want to treat. Been there, done that and yes hindsight is 20/20. I have 3 sick teens, if I knew then what I know now.....yes I would have treated them.
Just my opinion. But a small trial with abx as opposed to years of physical, emotional, and neurological problems which affect a child's ability to learn, communicate and socialize with family and peers. Well, I would choose abx.
-------------------- 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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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Teresa,
While the IgM isn't very compelling, the IgG certainly has a lot of very compelling bands. If it were me, I would want an LLMD's opinion on this matter. I would want to hear from Dr. J, or have your LLMD perhaps consult with him.
Dr. F at Columbia is a brilliant researcher, but if he indeed "throws out" all IND bands on a western blot, then his opinion differs vastly from the majority of ILADS physicians.
There is a well established body of evidence demonstrating limited or absent antibody response in patients clearly infected with lyme -- i.e., spirochetes cultured from the EM rash -- in spite of negative or indeterminate blood results in the same person.
So I am truly unmoved by this, despite being very moved by his amazing research into SPECT and lyme's effects on the brain.
I think you are smart to stand firm and advocate for your child. Don't stand down until a doctor who's a real expert tells you it's OK to do so. It's your child's life, and nothing's more important!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Timaca, even though I do understand that viruses play a big role in being sick. I do not agree with you.
You are telling me to abandon lyme completely for my son when you do not even know any other details.
First of all we live in an extremely high epidemic area, I pulled more deer tick off him than I can recall and mostly. He was born to a mom with lyme disease. ABX causes him hex reactions.
To tell me that his IGG should be disregarded. Everyone of his bands are lyme specific. That to me is very suspicious.
Dr. F does not believe in IND. bands but most LLMD even Dr. H from Igenex says they are significant. How did he get all lyme suspicious bands and 41 at 4 to me is also very suspicious.
You are entitled to your oppinion I am just afraid you may steer someone away from lyme that really could be helped.
I do believe that viruses play a big roll in people with lyme because, are immune system seems to bring out them when it is overworked.
To all I will pursue lyme and everything else to get my son well.
I am lucky that my degree of disability is not that bad.
Thank you all Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
njlymemom~ I have related my personal experience with Dr. F. When he was reviewing my Western Blot tests he "threw out" the IND bands on the Igenex tests. He did diagnose me with "probable lyme" based on LOTS of bands that were positive (from 3 different labs) and my symptoms.
I doubt that he would diagnose someone based on symptoms alone, as you can't tell the difference between a viral infection and a bacterial infection based on symptoms. The symptoms are the same. Hence that is why it is important to run lab tests.
Teresa~ I am glad that you will pursue lots of reasons for your child's poor health. Do check into the chlamydia pneumonia (Cpn). With his ongoing bronchitis, that could be an issue. One gets a "herx" reaction with Cpn when starting antibiotics too. For further info see www.cpnhelp.org.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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YOU GO GIRL!!!! Everyone means well, but in my opinion, and it's only my opinion; IT IS NOT WORTH THE RISK OF NOT HAVING HIM TREATED!!!!!!!!
Also, I just remembered something last night that haunted me!! A very sweet and wise gentleman advised me to be tested for Mycoplasma. (I've had pnuemonia and been in the hospital twice in the last 2 months. I went in for a 2 wk. check and all of the pnuemonia is back!) So, because of your son having bronchitis so often, I would definatly have him tested for this also. You have to before he starts any antibiotics or the test won't be accurate.
Someone asked if my son is on antibiotics; forgive me as I don't remember your name---I'm sorry.
He was on Doxy 200mg twice daily for 2 months. The HUGE problem is that because many of his sypmtoms are psyciatric; all of those symptoms became much worse duing treatment!! His LLMD called it a 'brain herx'.
The problem is that it got so bad that he started hearing voices. I thank the Lord that he finally came and told me about it. We had to stop treatment for a while, and slowly re-start it after a week. With much prayer and stopping the meds., this went away. Well, then he became suicidal!!! He began to ask me questions like; "Mom, if you kill yourself, will I still go to heaven?!!!; and "If God knows that you're sick, he'll forgive you for killing yourself, right?"
I thank the Lord daily for giving my son the comfort in asking me those questions, or I would not have known!!! I immediatly took him back off of his treatment!! I contacted a Neurolyme Psycriatist for a consult. Unfortunitly, we can't get there until late July as he is in NJ.
He did start back on a low dose treatment until finishing the Doxy. Then he started Ceftin. Because of his reactions, I don't want to put him on the full dosage untill we see the other Dr.
You had mentioned your daughter. Would you please send me a PM and tell me more about your experiences?? I would REALLY appreciate it!
Teresa, these are the reasons I would not waste any time in getting your son tested for ALL co-infections, including Mycoplasma! And I would start treatment as soon as you can! Just the fact that he's had herx reactions to antibiotics would be enough proof for me.
Posts: 351 | From Georgia | Registered: Feb 2008
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