For those that helped me with questions regarding if my daughter had symptoms of lyme, if I may have had it for longer, and if I should get her checked....here is a follow up.
Did call Dr. J.
He got us in for September.....but they called yesterday with an opening for Monday June 4.
Wow...I guess I am on my way to some answers one way or the other.
I am curious as to how this will pan out.
Posted by Lymetoo (Member # 743) on :
AWESOME!!!
Moving to General Support.
Posted by kidsgotlyme (Member # 23691) on :
That's great! The sooner the better Posted by angelp (Member # 36878) on :
He's great!
Our business partners daughter just got done with treating for a few years, but shes all better...he basically saved her life..shes entering her senior year of college.
My daughter and son are getting tested, unfortunately they are 23 and 24...too old for Dr. J.
I send many blessings for your daughter and hope she isn't infected, but you have the best for kids if needed.
Good luck and God Bless
Good luck
Posted by pme (Member # 31621) on :
Thanks I am feeling nervous and a bit crazy here. But looking back there are a lot of things that could be Lyme related a long time ago for me. They are all so darn vague though.
Plus...overall she is doing better than when she was smaller but it does cycle through for her.
Am I crazy to do this
(Conversation with my mother has me feeling this way I think. She is all on board and knows that I have it but I think she thinks I am nuts to bring DD to an LLMD)
On the other hand, I had such a great conversation with a PT who was treating me who had acute but very severe Lyme and still has residual memory loss. He was so understanding. I have been taking DD to this office (but he is not her therapist) and he really made me feel far less nutty about taking her and spending the big bucks.
Why am I so nervous about this?
Posted by TF (Member # 14183) on :
It's normal to be nervous. First, you don't want the doctor to treat you like an over-reacting mother.
(That won't happen with Dr. J, by the way. Here you are with lyme and here you have a somewhat abnormal child. He will be glad you came to him for advice no matter what the outcome.)
Second, you don't want to hear that your child has lyme.
So, you are normal to be nervous.
Posted by pme (Member # 31621) on :
We are back
What a nice man. He was very compassionate.
I sat there wondering why I was there....looking at my daughter right now you wouldn't suspect a thing.
I mean she has a hard time sitting still, you can certainly see the skin and allergy stuff....but everything is so vague.
Looking at her history I think there are a lot of red flags.
I asked him if he thought I was crazy to think she may have Lyme, given my "autoimmune" history before having her. He said I was smart because really bad stuff can happen if a child has lyme and we don't know. Very reassuring I am glad I went.
So they are doing a western blot and took some blood for cultures (stony brook?) and we will see.
I think we took a little too much blood though. She threw up as we were leaving and the whole way home. Usually that much sickness is part of an anaphylactic reaction but I assume maybe the blood draw.....I don't know. She does like to keep me on my toes. And she did prove that she does have GI issues:)
Thanks for the support. I will keep you posted.
[ 06-04-2012, 09:03 PM: Message edited by: pme ]
Posted by Keebler (Member # 12673) on :
- If nothing else is learned from all this, I hope no one ever again ask ANY doctor if they think them to be "crazy" - I would like to see that word eliminated from our vocabulary.
I have such a strong visceral reaction anytime I see someone post they "asked the doctor if I might be crazy."
I've actually asked this - before I knew about lyme and was told by doctor after doctor that it was all in my head. I really thought they were right. They were not.
Sadly, this is confusing but very real. You can put any question of "crazy" to rest now that she has an excellent LLMD.
The vomiting could be just from sheer exhaustion. I've been so very tired that I've vomited.
Lyme can interfere with the stomach in many ways.
And if there is any inner / middle ear disturbance, that can also trigger vomiting.
If heat was a factor today, that adds to it all, too. Off-gassing from the roads, a hot car and vehicle exhaust could also be to blame.
Hope she rests well tonight. You, too. -
Posted by TF (Member # 14183) on :
Sounds like a good visit. When do you go back or when will you hear something?
Posted by angelp (Member # 36878) on :
Glad you took her...better to be assured its not lyme and better to have Dr. J if it is.
I am very nervous about have my daughter tested, but she has so many of my symptoms and I now know that I was sick for many years, probably before she was born.
My oldest is being tested and I will probably get the middle son donee too...just to be on the safe side.
Don't worry, you have done the right thing...sorry she got sick...hope she is feeling better.
Sending healthy prayers for you and your family..take care
Posted by BoxerMom (Member # 25251) on :
You did the right thing. No question. Don't let people make you doubt yourself.
Keep us posted!!!
Posted by pme (Member # 31621) on :
Keebler....I hear you about "crazy". I shouldn't say that. I think it is partly a side effect of my lyme. I have no clarity in my brain. Also, my "gut" instincts are also impacted by my fuzziness/brain fog.
Self doubt, low self esteem, its all a major problem for me right now because there is no sense of wellness, I feel like I am on a tightrope walking 30 stories over a city, any little thing will throw me over the edge. I think the self doubt is inevitable because I can't trust my body right now, its just a fact. You all know what I mean.
(off topic...does anyone else think "fog" is not a thick enough term to describe the problems in the head.....brain cement wall would be better....)
TF.....at least a few weeks for preliminary test results. I don't know what I will do if it is positive. Do I treat? Naturally probably with her...I would use herbs over abx because of her anaphylactic rxns to some antibiotics. I wouldn't really want her to become resistant to the one abx she can tolerate.
We will cross that bridge when we come to it.
I personally am in bed today because I think the whole trip and the sickness/worry about if it was a reaction was too much. Or it could be that the herx I was "expecting" came a day later. Who knows?
Anyway...what a beautiful man. Very concerned, very intune with the kids. When they took her blood her watched her the whole time, knew before I did that she paled and made her lay down and was just compassionate.
It is really so strange not to have to do the whole "defending your position" thing when you walk into a doctors office. This has happened to me twice lately: Dr. J and my LLMD. Wow I guess I am just used to being doubted at every turn.
Thanks everyone for your support. Angel...let me know what happens with your daughter's test.
Posted by philly78 (Member # 31069) on :
I finally took my son who is 12 to see Dr. C in PA. Like you I was nervous and I thought she would think I was crazy or being paranoid.
Well...I wasn't.
He is currently being treated for lyme, bart, babs and they fry bug.
You did the right thing. Good luck with it all.
Posted by TF (Member # 14183) on :
You are describing the difference between a lyme-literate professional and all of those non-lyme literate doctors who are out there.
Posted by pme (Member # 31621) on :
Philly Do you mind sharing what his symptoms were? Did he have them since birth? How did they change over time.
I ask because DD has come far. She was the most difficult up until age 4. For the past 2 years we still deal with skin, gi, allergy issues. Behaviors are still not what I would call"normal", but if we base it on how she ussed to be (3 hour+tantrums, very violent, multiple times a week, no sleep at all), then she is doing better.
She is still oppositional, impulsive, and does have some tendency towars some severe behavior. It is less frequent though.
I am wondering if it cycles back at different points...like when they go through hormonal shifts towards puberty.
Thanks for sharing. I appreciate it.
Posted by philly78 (Member # 31069) on :
My son was born 8 weeks early after me being in the hospital on bedrest for 5 weeks. My water had broke at 27 weeks.
He spent two weeks in the NICU and came home on an apnea monitor and wore a pavlik harness for B/L hip dysplasia.
We had early intervention come out for the first year of life and he seemed to be doing okay...reaching all the milestones and what not so they stopped coming when he was 1 year.
As he aged, I started to notice that things weren't right with him. He was behind it both small and gross motor skills...he didn't speak or make many noises....didn't look me in the eye...and had floppy muscles.
Brought him a place for PT and OT and another place for social thinking classes. He finally started speaking when he was almost 4 and he did catch up a bit with his motor skills.
Till this day, he still cannot ride a bike. He is 12.
To make the rest of this very long story short...he ended up being diagnosed with Autism in the first grade and also being classified as gifted.
Mind you...even with all of these neuro symptoms and problems he had, he actually taught himself to read and do math. It really was amazing.
Well...around the 3rd or 4th grade, he started increasing difficulty with focusing on things....memory....was extremely disorganized and forgetful. He was also oppositional and impulsive and his sensory issues were back in full force. I don't think I had mentioned that.
He hated certain types of clothing. We had to cut off all tags. Never wanted to wear socks or shoes. Oh...and he always walked on his tippy toes. I had a hard time bathing him when he was younger because he didn't want the water anywhere near his face.
He FINALLY put his under water last summer when swimming and it was totally an accident! He was upset but then realized it wasn't so bad.
Anyway, now I'm rambling on and on! I tend to do that when it comes him.
Oh...he also had terrible night terrors and insomnia. Now, he sleeps too much but I think that is cause we're hitting babs.
I'm sure he has more symptoms which aren't neuro...like very poor stamina for physical activity. But the neuro issues are really the main problem for him.
Posted by philly78 (Member # 31069) on :
Oh I forgot. We did have some allergy issues as well and had to cut out dairy from the diet but my son lost too much weight.
He is too skinny as it is and because of his sensory issues, there aren't many food he will eat. So we did NAET and he doesn't have a problem wih dairy anymore.
Posted by pme (Member # 31621) on :
I know this sounds a little strange but I know where you are coming from.
I fully believe that if we had (a) continued feeding my daughter foods that she was reactive to (b) continued medicating her with things that she was reactive to (c) didn't bring her for regular PT and (d) continued to vaccinate her...she would have been on the spectrum
I am lucky because she walks a fine line, but I noticed what foods offended her when she wasn't eating a lot of foods, and eliminated all of them. I saw the seizures followng shots at 6 months and have refused to continue to vaccinate her. A lot of people are now recognizing food sensitivities in their school aged kids. I feel we are blessed to have identified them at a time when she didn't really know what "real" food was. Now the tests are confirming that I was correct, but a lot of doctors doubted me. I would rather have her not ever had the foods than have to pull them later.
So I think that the fact that we have removed all of those "stressors" from her nervous system has helped her to keep this at bay. Case and point, I had several people tell me she was PDD one summer when she was almost 4. Well the "pdd" type behaviors were awful awful awful, but they began after being under anesthesia for an endoscopy. Her skin erupted, fever developed and we had 3 months of out of control manic behavior. A developmental ped said she had sensory processing issues too. Again, not enough to be recognized or qualify for any services.
Sound familiar? How many people here have major flares after a surgery, even a minor one (me! me! me!). Anyway the chemical load was too much.
What is NAET?
I am so glad he can tolerate dairy. I hope he is gaining weight and that the treatment helps him incredibly.
Posted by philly78 (Member # 31069) on :
Omg. I had to have a C-section because of problems with fetal distress during labor. I had a very difficult time with that! I wonder if that is what made my symptoms flare. Hmmm.
PME, how old is your daughter now? PLease keep us posted on her results/treatment.
My kids are both patients of Dr J now.
My older one had significant sensory issues, rigidity, massive meltdowns, etc, etc. The DAN protocol (customized) helped so much. Removing gluten and dairy was huge for her. Now she feels different from her peers because of the way she eats, even though I try to normalize it as much as I can. But her overall quality of life is so much higher now!
I also wondered if it was overkill to go to Dr J, when she is doing SO much better than she was before. But her blood culture test came back positive. And she clearly herxed 48 hours after starting the abx. I do feel it was the right choice.
Good luck to you and her!
Posted by pme (Member # 31621) on :
Garden.... She is 6 now. Sounds a lot like your little one.
I will definitely let you guys know what happens.
I don't know what exactly I will do if it comes back positive. She has had severe reactions to augmentin and amox. I would never give them to her.
She does ok with omnicef but I don't know if I want her to become resistant to it.
Maybe a more natural approach? I hope Dr. J. is willing to work with me on this.
But I will cross that bridge when I come to it.
Posted by pme (Member # 31621) on :
I posted in medical....but in case you were wondering.....it was positive (lyme culture)
Do I get my other daughter tested (age 10) as it seems that I passed it via breast milk or during pregnancy?
She is not nearly as symptomatic as my 6 year old but is sometimes emotionally unbalanced (like she is major pms ing) and seems bloated in her tummy/overweight compared to her activity level and her genetics.
Any opintions if I should get her tested? Also, does anyone know if Dr. J. will do a sibling test without an initial large office visit fee (e.g. draw blood and send out, then I can pay for an appt if it is also positive?)
![[Smile]](smile.gif)