Hello My 8yo son recently had a wide range of viral testing done due to symptoms he was having a few months ago (mid March). He started having horrible anxiety/panic/terror attacks, usually at night, but I noticed it was when he was just still for long enough it started. He'd feel very weird (vision & cognitive issues) then start to get panicky. At times he would be screaming for me to help him...he felt like he was falling, couldn't see, etc. He would be sweating, shaking, heart pounding, very tense all over. These went on daily for over a week and slowly diminished to where he'd feel a bit "weird" he'd say and then now nothing. In the middle of this he had a few days (about a week apart) of high fever. I let these go as I do with all fevers unless it gets dangerously high. He normally gets eczema in the winter, but this year it was a different kind of rash...large bumps, some very big and red, looking infected. Thinking back now I am remembering comments from him about aches & pains - knees, neck. I also recently noticed his eyes were very red one day. I am sure I missed other things and just dismissed them, not seeing the whole picture.
We see a Functional Medicine MD and he ran the Western Blot with a slew of other testing, mostly viral. My son showed reactive to the 23 kd band IGM, but nothing else. He also had high antibodies for CMV & herpes as well as low neutrophils. The doc said these virus ones just showed exposure, but all together everything showed low immunity. He also had an EEG done due to the neuro symptoms & fevers. It came back mildy abnormal - suggesting mild dysfunction, cortical irritation & a tendency towards seizures.
Back to the lyme - the doctor said since his symptoms have diminished - all but his eczema currently) we should just boost his immune system and that nothing was for sure positive. I was reassured but after reading more am now freaking out.
Normally he is a very healthy and outgoing kid, it was very scary when he was having the panic episodes and I couldn't help him. I am not sure what to do now. This doctor seems very laid back about it. My thoughts are that IF he does have it we should be tackling this, not waiting for more symptoms to show up. He was saying his own immune system could keep it at bay (if he has it) and to monitor him while boosting it.
Any thoughts will be helpful. I am VERY overwhelmed right now reading. Getting scared and could use some guidance!
Thank you!
Posted by glm1111 (Member # 16556) on :
BREAKING THIS UP FOR EASIER READING
quote:Originally posted by redfirefly:
Hello My 8yo son recently had a wide range of viral testing done due to symptoms he was having a few months ago (mid March).
He started having horrible anxiety/panic/terror attacks, usually at night, but I noticed it was when he was just still for long enough it started.
He'd feel very weird (vision & cognitive issues) then start to get panicky. At times he would be screaming for me to help him...he felt like he was falling, couldn't see, etc.
He would be sweating, shaking, heart pounding, very tense all over. These went on daily for over a week and slowly diminished to where he'd feel a bit "weird" he'd say and then now nothing.
In the middle of this he had a few days (about a week apart) of high fever. I let these go as I do with all fevers unless it gets dangerously high.
He normally gets eczema in the winter, but this year it was a different kind of rash...large bumps, some very big and red, looking infected.
Thinking back now I am remembering comments from him about aches & pains - knees, neck. I also recently noticed his eyes were very red one day.
I am sure I missed other things and just dismissed them, not seeing the whole picture.
We see a Functional Medicine MD and he ran the Western Blot with a slew of other testing, mostly viral. My son showed reactive to the 23 kd band IGM, but nothing else.
He also had high antibodies for CMV & herpes as well as low neutrophils. The doc said these virus ones just showed exposure, but all together everything showed low immunity.
He also had an EEG done due to the neuro symptoms & fevers. It came back mildy abnormal - suggesting mild dysfunction, cortical irritation & a tendency towards seizures.
Back to the lyme - the doctor said since his symptoms have diminished - all but his eczema currently) we should just boost his immune system and that nothing was for sure positive. I was reassured but after reading more am now freaking out.
Normally he is a very healthy and outgoing kid, it was very scary when he was having the panic episodes and I couldn't help him.
I am not sure what to do now. This doctor seems very laid back about it. My thoughts are that IF he does have it we should be tackling this, not waiting for more symptoms to show up.
He was saying his own immune system could keep it at bay (if he has it) and to monitor him while boosting it.
Any thoughts will be helpful. I am VERY overwhelmed right now reading. Getting scared and could use some guidance!
Thank you!
Posted by glm1111 (Member # 16556) on :
Hi mom,
Sorry your son is suffering. A lot of the symptoms you describe could be coming from a parasitic infection. Especially hives and panic attacks.
Go to Humaworm.com and read the symptom list. Parasites/worms can be a co-infection of Lyme and often overlooked by the medical communuty.
The testing is inadequate and even if he is infected could come up negative. Humaworm has a childrens dose, Parasites need to be treated until symptom free and on a continuos basis.
Research all you can about parasites and do a search on here as well.
Gael
Posted by dbpei (Member # 33574) on :
redfirefly, I would try to find a lyme literate MD (LLMD) to discuss this with. You can provide the LLMD with all of the test results and this way, in case it is Lyme, your son can be treated. It must have been so frightening to see him experiencing all of this.
To find a LLMD, you can post on this website in the section 'SEEKING A DOCTOR' or you can send an email to [email protected].
Please keep us posted - and best of luck with this.
Posted by slowli (Member # 36697) on :
Also, just so you know...I was told by my LLMD that band 23 is extremely specific for Lyme.
It simply doesn't show up if the bacteria isn't present.
She counted my Western Blot as positive, even though I only had that one band turn up definitively positive too.
It wouldn't be the worst thing to have him take a month of antibiotics (he may be old enough for doxy if he's gotten all his permanent teeth) and see if his symptoms first get worse for a few days (herx reaction) and then gradually better as the month goes on.
If he has the herx reaction, that is proof positive that he has it and the bugs are dying. It's a good thing.
Good luck, I would get him into see a pediatric LLMD as soon as you can. If he was recently infected, the sooner you nab it, the better.
Don't be scared, he can be treated and get better! Just like any infection. You'll get your happy, outgoing little boy back!
Posted by hopingandpraying (Member # 9256) on :
Has your son seen or is he being treated by a Lyme-literate doctor (LLMD)? I would get him to one a.s.a.p.
Don't waste your time or money on non Lyme-literate doctors. They have no clue about this horrible disease or its complex treatment!
Will PM you with some suggestions.
Posted by redfirefly (Member # 37462) on :
Thank you everyone. He has no symptoms right now, just the eczema like rash on the inside of his thighs. As I said it looks different than in years past.
The doctor did do a stool test and no parasites were present. His gut flora was okay, but needed a little more good stuff. I am sure there may be more to look into though.
We are a really healthy household since I already deal with health issues. So when he did get fevers I gave him stuff them to help his immune system.
I had read too that the 23 band was specific to Lyme and that is when I got more worried. I just don't want to "watch and wait" and then IF it is Lyme the symptoms that come back are much worse.
I just know what ignoring things for myself got me and want to be on top of it for him!
He has only seen our regular (more holistic type) MD.
Thanks again! Posted by Keebler (Member # 12673) on :
- Gael, thanks for breaking up the text for easy reading.
redfirefly,
A stool test for parasites does not test ALL possible and all that often go along with lyme.
Not sure how you are supporting immune function but be careful as some kinds of immune "boosting" can backfire if too strong with lyme so be sure an ILADS-educated LLMD is guiding whatever immune actions you or your son take.
The Th1 and Th2 immune functions can be sort of flipped from normal in varying degrees - so it requires a special approach to not overwhelm the part of the immune system that is already overworked and needs rest.
And, the part that needs to "wake up" needs to be done so very carefully.
Even most regular holistic doctors do not understand this (or many other unique aspects) about lyme.
You say your son has no symptoms other than a rash but those panic episodes are VERY serious indeed, and a classic sign of lyme &/or other tick-borne infections.
I sure hope he feel better soon & hope he can find a LLMD.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posted by redfirefly (Member # 37462) on :
I apologize for the first post all clumped together.
As for symptoms, I only meant that right now things have calmed down. The panic/terror like episodes were extremely scary and as it happened more often I knew something was not right.
I am glad though that I took him in to see what could be going on and the doctor at least tested him.
He has not had one of the episodes in weeks. However, I do think I seen his eyes being quite red within the last week or so. I wish I would have written it all down, but I didn't think this was it.
He had been complaining about his stomach aching for awhile too. Also some other pains.
He is only taking extra vit D & probiotics for the immune system.
I have Hashimotos and adrenal insufficiency, so I have read a little about the Th1 & 2 aspect as well. Not nearly enough though!
I hope I can find a doctor that is somewhat close to us to take him to.
Thank you for all your help. Posted by Keebler (Member # 12673) on :
- Lyme can cause Hashimotos and adrenal insufficiency. The entire endocrine system is usually clobbered with lyme.
Re: adrenals - be sure to avoid steroids, other than a VERY, VERY low dose of Cortef, guided by a LLMD. Steroids can make lyme much worse.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by redfirefly (Member # 37462) on :
Thank you Keebler. I have been thinking I should get tested myself just to rule it out possibly, since I have seen many with my issues had Lyme.
I am surprised really that no doctor has checked me yet with how crazy my symptoms were when things got bad.
I am on Cortef, low physiological dose...I had to be put on it since I was literally bedridden and crashing constantly. IT was very scary. With the 1st dose I noticed a huge difference.
I was found to have Pyroluia and that may be the root cause for me. Still I'd like to rule out Lyme if at all possible.
So I hope for myself that is not something I have to deal with as well. So many of the symptoms are very similar.
Doing somewhat better now, but still have things to address for myself.
Posted by AuntyLynn (Member # 35938) on :
Those panic attacks worry me. They were the first sign - although we didn't know it - that my mother had neurological Lyme.
I would take photos of that rash, for future diagnostic purposes.
Also, Lyme replicates every 28 days or so, you may want to keep a diary to note when/if his symptoms seem to flare. Some other co-infections kick up in shorter cycles.
by a psychiatrist in SE PA who found that panic attacks are often a first sign of neuro involvement.
Have you found an LLMD in your area yet?
Wish you and your son the best of luck.
Posted by redfirefly (Member # 37462) on :
Someone PM'd me a possible doc in my area, I will call in the morning.
If the wait is long our regular holistic doc had said he could run more testing at least and then I can bring stuff to the LLMD. Hopefully the wait will not be too long.
I wish I would have taken photos when the rash was worse. I seen pics of rashes on a doctor's site and it looked very similar.
Thanks for all the help. I am trying to read and learn all I can when I have a few free minutes (4 kids, 3 homeschooling & my health stuff) SO very busy!
VERY scared myself about the panic/neuro episodes. It was terrifying just to be so helpless when it was going on.
I have been watching him like a hawk now for anything out of the norm. Will definitely write everything down.
The EEG results did not set well with me either. The doctor even said something is causing that issue. I would think that called for more testing even.
Posted by redfirefly (Member # 37462) on :
Oh wow. So sorry to her your son has went through all of that.
Thank you for sharing.
So he could be in late stage and never had any other symptoms? I mean he is my child who is rarely, if ever sick.
We eat really healthy, gluten free here, low to zero processed foods. I cook from scratch every day.
Since he had the Western Blot done what should I ask my doctor for next? Igenix?
I have left messages for a few LLMDs. Worried about getting one that will be good.
We think holistically at home, so if possible I'd like a blend of care, not just drugs, even though I know he may need them.
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My 8yo son recently had a wide range of viral testing done due to symptoms he was having a few months ago (mid March).