So, we have our appt with Dr. B today

[fightingmom]

Did Dr. B tell you to make it with the PA?

 

As for the meeting we have to use a new location and the days may have changed. When we know our next meeting I will let you know.

 

No. He didn't say a word about that. The women at the front desk he handed my file to said it, and then I corrected her -- and she looked down at my file and said, no he wants you to come back and see whatever her name is. She could tell I was not happy with that and then said that he would be available if we needed him as he would be in the office.

[Fixit]

if you haven't drawn the labs at dr b office, which it sounds like something that has changed since i've been, i would go to your local dr, if you can, tell him the labs you want drawn. then they will be ready when you go and you will have a copy.

i have gotten more aggressive, with my local drs and tell them, this is what i want done.

it doesn't cost them anythng and this is my kids health and i am on a journey.

fight till you find a dr who will work with you to draw labs.

my ped will draw pretty much anything i want.

and when i talk to my DAN, panda experts, endo, i ask if they can email or fax a request that takes some of the practioner for all the requests

Edited April 12, 2012 by Fixit

[bulldog24]

Yeah, I am kinda disappointed. My daughter was acting strange so I called and was told oh well you need to come in. I told them I was 4 hours away. The recep told well do a phone consult with pa @ $100.

 

I have never heard that you cant call for advice with out it costing.

 

I am hoping that the pa isnt as rushed feeling.

 

But what else are we supposed to do??

Hes really the only one " around" here.

[bulldog24]

I was also just there 2weeks ago when I called

[bulldog24]

One last thought and I will shut up...

 

I am just worried if we have a severe crisis, will they help? I mean I left a message once that was never returned. I am not even a needy client. I only call when absolutey needed. Can anyone share experiences, even by pm?

 

agaon sorry to side track the thread. Aso this is not a bash session for dr. B. I am grateful for him. Just dont know what to expect

[fightingmom]

We had labs drawn in his office last visit. I called for results and was given a hard time. I didn't like that either.

I also had a call go unreturned by them on their dr message line. We will see how this goes. I'm not being pushed around today that's for sure, so we will see how this goes. Lol

[JAG10]

The nurses have a policy to return emails within 24-48 business hours. I used to be able to email a question and as long as I kept it concise, I got an answer.

 

It seems lately the nurses are prone to directing any and all substantial questions to "make a phone consult appt with the PA." They did this to me once when I had just met with Dr. B and he had left forgetting to write down to have the PA write a script for a steroid taper. The PA was there the next day, but the nurses said I had to make an appt. I made the appt, aggravated, but the PA said the nurse should have gotten the script from them while I was there and she wasn't going to charge me for a 2 minute phone call.

 

So, you will get an email response, but don't be surprised if it is "make an appt." And the policies are always changing.

 

We are all grateful. But that doesn't mean we shouldn't express ourselves when these evolving policies rub us the wrong way.

[fightingmom]

Well, we saw Jennifer and she was very nice and spent a lot of time with us. She was very thorough and based in my symptoms and labs I have officially become a patient as well...great!

 

We saw Dr. B. poke his head in for a second after Jennifer left to consult with him about a plan. They spoke about 5 minutes and while it wasn't much of his time, I did feel like she gave us so much of her time and compiled everything to present the important things and still get his input. So, in summary, I actually was pleased with how things went and overall we ended having more attention. I really like Jennifer, too.

 

We didn't get to have any labs done at the end because the lab closed. Damn it. But we go back in 4 and 5 weeks for food allergy tests and some more substation environmental test called "ID". Son still has a sinus infection and so do I. We both are on augmentin again and they added zith to my sons abx. I have a phone consult set up in two weeks to check and see how that went. I was told to continue advil as needed until then.

 

His labs showed:

DNase-B titer is 273 (is this good or bad?).

He has lost his streptococcus pneumonia immunity

His total IgG serum was 705 which is low.

His vitamin D was low at 17

Albumin was slightly high at 4.7

 

Now for me:

IgG serum was just within normal limits by a few points.

DNase-B was 114

ASO and ANA "negative"

Influenza type B ab IgG was 0.17 L.

Mycoplasma pneumonia IgG was high and > 5.00

All but 2 out of the 14 subtypes for Streptococcus pneumonia antibodies were less than 0.3.

And the best for last: a positive on western blot for band 34. They said usually this one doesn't show up even in people who have positives on other bands and when it does it's very indicitive of Lyme. Sent me home wih kit to have igenex done and suggested LLMD.

 

I don't have a clue where to start with our labs. I don't understand why we are both chronically I'll and have constant infections and show no antibodies to anything pretty much ever, even after vaccines. Makes no sense to me.

 

And how serious is this low IgG? I guess I have a lot of researching to do tonight.

Edited April 12, 2012 by fightingmom

[Fixit]

Sounds like you do have alot to investigate.

I am so glad your visit went well. It's good to hear!!

[fightingmom]

Do any of you have thoughts on the low IgG? How concerned should I be about this?

And, I am antibody illiterate. Does the 273 number seem high or low? And, would two courses of antibiotics (amoxi and augmentin) in the 4 weeks prior to lab work have altered this at all?

Anything else in there you guys see? Labs are not my strong suit.

Edited April 13, 2012 by fightingmom

[bulldog24]

Did they test your kiddo for lyme?

 

Are they supplementing d3? Glad you liked the ps

[ibcdbwc]

I'm not a lab person either -- you may want to post under a different heading for more response. My ds11 is also IgG deficient borderline-- though signif. in subclass 2 and 3-- which predisposes him to infections. Dr. T said very common with PANS/PANDAS.

Did you get a chance to discuss histamine connection?

[fightingmom]

I didn't get a chance to discuss any connection. The appt turned into more of a whirlwind I was not expecting. Lyme stuff, my labs, my sons labs, etc. and by the time we were done the lab was closed and I was so sidetracked I lost all my words and didn't think about MTHFR or histamine until I got home. I'm pretty annoyed with myself over that.

 

My son tested negative, but on the western blot, and after months on antibiotics, so probably not the most reliable. Also, I have been reading that IF you have had lyme for a long time, your body may stop building the antibodies to it (much like how in strep this happens and a lot of pandas kids have pandas but no elevated strep titers) and they may not show at all after a while. I can say that I have been sick for 15-18 years and now that I know what I have learned about myself, I am VERY suspicious that this has been my problem for years and years and it's very likely my son was born with lyme. It could have explained so much. He was sick 1 week after birth and hospitalized for a week for infection and high fever, and they never could give a diagnosis, and it's been one thing after another since thing. So, I feel like maybe the IGENEX is better utilized for him, to try to reveal something, as from talking to a few folks and reading up all night, it seems that testing for band 34 along with mycoplasma pretty much guarantees a long standing lyme infection...

 

Have I said "OH SH*T!!!" yet?

 

Yes, we are supplementing with D3 now, and I'm going to carefully select some other things to add. I realize now that things are getting much deeper than I thought and we are really sick. It's going to take a lot of peeling back the layers I think to get him and i completely well.

Edited April 13, 2012 by fightingmom

[sf_mom]

Fighting Mom: I have three children with Congenital Lyme. One of my children presented with classic PANDAS like symptoms after a strep related illness. When we tested our children via Igenex there was only one child that produced antibodies and he was borderline positive for Lyme, positive for Bartonella and positive for Babesia. The other two children only showed positive for band 41 and negative for all co-infections via Igenex. We were fortunate enough to be seeing a very experienced LLMD and in light of my fibromyalgia like symptoms, he felt it might be congenital Lyme for all of our children. Hence, our Dr. did not use tests that looked at antibodies when we retested the two children that appeared negative for Lyme via Igenex. We did a provocation with antibiotics, collected urine and then looked at the urine for matching DNA. Our older son who does not make antibodies to Lyme (his body doesn't recognize the bacteria as foreign since he has had it since birth) and was positive via this method of testing. I eventually tested positive for Lyme as well via three different methods of testing.

 

A couple of good tests that don't look at antibodies are the Dot Blot/Urine PCR via Igenex and the new live blood culture but must be off antibiotics for 4 weeks to test via this method. You might get lucky and your child might show up positive via antibody testing like we did for one child but you might also get inconclusive or negative results. I recommend seeing an experienced LLMD to help you through additional testing process.

 

Treating for Lyme et al has not been easy and its been long journey with a lot of ups and downs for our family... BUT, we collectively continue to make progress. I am now off antibiotics in hopes I can sustain my gains without symptoms resurfacing. Today, I feel better than I have in years. I do not believe I am done with treatment but enjoying the break of feeling like a normal healthy person. I was on antibiotics for almost 20 months and will pulse treatment when/if symptoms return from here on out.

 

Wishing you all the best as you potentially begin your battle fighting LD et al.

[fightingmom]

Fighting Mom: I have three children with Congenital Lyme. One of my children presented with classic PANDAS like symptoms after a strep related illness. When we tested our children via Igenex there was only one child that produced antibodies and he was borderline positive for Lyme, positive for Bartonella and positive for Babesia. The other two children only showed positive for band 41 and negative for all co-infections via Igenex. We were fortunate enough to be seeing a very experienced LLMD and in light of my fibromyalgia like symptoms, he felt it might be congenital Lyme for all of our children. Hence, our Dr. did not use tests that looked at antibodies when we retested the two children that appeared negative for Lyme via Igenex. We did a provocation with antibiotics, collected urine and then looked at the urine for matching DNA. Our older son who does not make antibodies to Lyme (his body doesn't recognize the bacteria as foreign since he has had it since birth) and was positive via this method of testing. I eventually tested positive for Lyme as well via three different methods of testing.

 

A couple of good tests that don't look at antibodies are the Dot Blot/Urine PCR via Igenex and the new live blood culture but must be off antibiotics for 4 weeks to test via this method. You might get lucky and your child might show up positive via antibody testing like we did for one child but you might also get inconclusive or negative results. I recommend seeing an experienced LLMD to help you through additional testing process.

 

Treating for Lyme et al has not been easy and its been long journey with a lot of ups and downs for our family... BUT, we collectively continue to make progress. I am now off antibiotics in hopes I can sustain my gains without symptoms resurfacing. Today, I feel better than I have in years. I do not believe I am done with treatment but enjoying the break of feeling like a normal healthy person. I was on antibiotics for almost 20 months and will pulse treatment when/if symptoms return from here on out.

 

Wishing you all the best as you potentially begin your battle fighting LD et al.

 

Thank you SO much! This was very helpful and insightful for me. I am currently researching LLMD's and trying to figure out how to budget this because we already have thousands of medical bills piling up already. But, we will get there I think - hope! I sit here typing this with pain radiating down my back, my feet hurt and my neck is burning. I have contributed this to my work for years and running a business and being in school full time on top of all the other craziness life has brought with it. I'm having a major - holy crap - I'm REALLY sick moment. As, many of my blood tests with exception of white blood cells always showing infection -- are always normal and I'm always dismissed...besides all my female,endo,cyst,ovary stuck to my intestines issues. LOL. Those they are able to open me up and find real proof off. Everything else...I've been pushed off and then haven't pursued with much effort either. At least now, I can give myself permission to be tired and acknowledge that it may be time to stop being super woman and sometimes allow myself to do nothing. I have to say, since my surgery 3 weeks ago I have not been the same. From a surgical standpoint, I healed fine. But each day I grow more tired and weak and couldn't figure out why. Just a trip to the grocery store is wearing me out. Like really...to the point of exhaustion. Maybe it's this that has been complicating things. Crappity, crap, crap, crap.