I see I have hours of reading to do here!- and that this is a very knowledgeable group. I am trying to get up to speed quickly- to help my sons (and myself)-
I've been dx through my pcp twice (3 & 4 years ago) with Lyme- using standard Elisa and Western Blot- my PCP is good- but does not believe in Chronic Lyme.
My 8 yo son has been having many issues- cognitive, developmental, shingles in April- dx with a heart block in May- while researching for an issue I was having - I found the heart block linked to Lyme.
Brought him to a Lyme Literate NP- Igenix came back-
He is being treated with a start of 3 months on amoxy. 750mg per day. Everyone is seeing great improvements!
My 14 yo has been sick since beginning of August-headaches, nausea- foggy brain- he plays HS football- they thought he had a concussion (but no one saw him get hit)- took computer concussion test 8 times and failed to get to his baseline (taken at start of season).
Brought him in to LL NP- just got his results back and I am puzzled- (I also asked her to do a CBC)- he is not eating- losing weight- etc- and just started freshman year HS.
His IGG: 41 IND
IGM: 18 + 39 IND 41 +
The blood was too unstable by the time it got to CA to do the CD57. (could this have impacted other results too, I wonder?)
His CBC- RBC HIGH (5.61) Hemoglobin at top margin (15 when above 15 is high) Hematocrit- HIGH (43.7) MCV - 78 (LOW) MCH - 26.7 (LOW)
this is a new NP I am seeing- Our pediatrician is rumored to not believe in Chronic Lyme (although he is quite good)- so I bypassed him for the tests.
I am at a loss as to what to do with my sons results-
NP didn't even mention the CBC being off (I saw it when I asked for a copy of labs)-
She says she believes it is LYME- and possibly a secondary stomach bacteria- She has stopped lyme treatment and we are waiting 3 weeks to get stomach bacterial results....
Thoughts? Would you consider him Lyme + with this info? Should I have CD 57 or another test run? gastro test for stomach bacteria will take 2+ weeks...sigh-
Oh- and he was on antibiotics for 2 weeks before results- first week he felt FABULOUS! appetite back, headaches almost gone- he PASSED the concussion test- (9th try) then WHAM- the start of the second week (day 10) on the antibiotic he got really sick- super nauseous, vomited- exhausted- and NP took him off antibiotic.
Don't know if I should take all of his lab reports and go to his PCP- or look for a LLMD (not NP)-
THOUGHTS? Thank you for taking the time to read all of this!
Posted by mom2kids (Member # 31972) on :
I'm a newbie to all this Lyme stuff myself, so I can't answer you. Just wanted to say hi and "up" your post...
Posted by gatorade girl (Member # 24896) on :
He probably was herxing the second week. Have you considered babesia for the second child. His CBC and rbi make me wonder in addition to the symptoms he is having.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by gatorade girl: He probably was herxing the second week. Have you considered babesia for the second child. His CBC and rbi make me wonder in addition to the symptoms he is having.
- Agree.
"The blood was too unstable by the time it got to CA to do the CD57. (could this have impacted other results too, I wonder?)'
YES!!!! The bloodwork should be Fed-Exed to the lab ASAP early in the week so it does not sit around in the Post Office.
I would find a more knowledgeable NP or LLMD right away.
Posted by tdtid (Member # 10276) on :
Hello from another New Hampshire. I'm so sorry that your sons are going through this. The ticks in this state are out of control. :-(
You are definitely in the right place. I learned soooo very much from Lymenet when I first started my journey.
Ask questions anytime they pop in your head. There is usually always someone here that can help or atleast point you in the right direction.
From my experience, most PCP's in our state...and everywhere for that matter, really don't know much about Lyme Disease. Sadly, many will dismiss it as being easy to cure with a short round of antibiotics and then wonder what is causing that person to still be so very ill.
If your ND is Lyme Literate, I know we have many good ones in this state. It's really about how YOU feel about the individual doctor. Please stick around and keep us posted.
Cathy
Posted by t9im (Member # 25489) on :
Hi 3xy:
Welcome to the world of the Lyme controversy. From diagnosis to treatment. The people here are great and have been invaluable to helping with our understanding of this insidious disease.
It is our daughter who has Lyme and babesia.
I�ve found it easiest to show a couple of u tube video�s on the controversy.