Dr. J Clinic - who do you see?

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Girlie
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Date Joined May 2014
Total Posts : 33852
   Posted 12/14/2017 5:51 PM (GMT -6)   
I'm planning to go in the New Year. I won't get to see Dr. J himself (just for about 10-15 minutes at end of appt) - so who are my choices as far as the PA's go?

I've heard KF is good. There's also a KL.


Who do you see?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/14/2017 6:17 PM (GMT -6)   
You are going. You are going!

Husband saw AW
I saw RM
and the kids saw CW

We thought they were all sharp cookies!

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 12/14/2017 7:59 PM (GMT -6)   
DS usually sees the ped person but once he saw KL and we really liked her! Knows her stuff just like the others. So glad you will be coming our way to see Dr. J.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 12/14/2017 8:17 PM (GMT -6)   
My wife sees KL she likes her. I think Hoagie saw AW he said he liked her.

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 12/14/2017 8:30 PM (GMT -6)   
I see KL.

She is very good. She is just what I needed. She listens to everything I say and write down and I am happy to report that she uses those as a guide to my treatment. She addresses my concerns with either a tweak in treatment or calming my fears about a symptom I am having.

I was such a mess, emotionally and physically, before I saw her.

I was seeing another llmd prior to this clinic. For some reason I just never felt safe. I felt unsure of everything happening to me. I also felt like he blew off my concerns. In fact one time he stated that us lymies are all alike...so no big deal to him when I had a concern about something because since in his mind he saw it all, so nothing concerned him. ugh. Well if it concerns me, it felt important because I am the only lymie I know for heavens sake and I deserved to have my questions and concerns answered. He never ran labs and I had to have my primary care dr order the labs that I felt might be needed to watch my body systems and organ health. He gladly ordered whatever I wanted, whenever I wanted. But now I no longer have to do that, KL runs labs every second week of treatment for me. They give you a standing order for labs to be done on a schedule for you. I don't mean to trash this dr, but now that i look back my case was too serious for him. He would be good for someone with a fresh bite, not someone who has been critically ill for 8 years.

Anywhoo, after my 2nd appt with her I really felt like she had my back. She had me covered. She ran the labs, she responded to those appropriately, answered every question I had and I could finally just trust the process.

She is kind, energetic, intelligent, confident, thorough and I never ever felt rushed.

I no longer lay in fear at night worrying about every little symptom or what will become of me then or in the future. I don't know if that is from healing or just because I find I really trust her and that she knows exactly what she is doing with me.

I feel she has a plan...she will change it up if my symptoms warrant, but for the most part she is not flying by the seat of her pants.

Not saying this hasn't been hard, but I trust the process now and can report that I actually am starting to see improvements. Yay!!! And you know what? She celebrates with me when I come in and have positive changes going on!

Something that really impressed myself and my husband about her. She knows her pharmacology. Really knows it! You can throw out a drug or herbal treatment that is and is not involved in your lyme protocol and she will know how it works, the chemical stuff behind how the drug works, how it works in the body, the side effects, the good the bad and the ugly about the drug, she can rattle off dosages and interactions with other drugs. I have many drugs that I have used in other situations I am in and she is right on them. She explains everything. This is huge for me because I have a fear of medication. So big that I will have panic attacks just by adding in a new drug. I can't even take an ibuprofen without being nervous. I usually have every side effect listed on every drug...that is how i got to this point. I have had drs stop treating me because I can't take drugs they write prescriptions for...they get frustrated with me and end the dr/patient relationship, if they can write a drug for me they give up. Not with KL. She gets it. She believes me when I tell her a trouble I am having with a drug and willingly works with me to find a solution. And...I feel so comfortable with her knowledge of pharmacology I know she knows possible interactions and is thinking about them and discusses the meds she is giving me and safe dosages for me. ahhh...my mind can rest.

One time I asked her if activated charcoal would have any affect on my insulin. Meaning, If I have insulin that I just took or took within 3 to 4 hours...(they call this on board insulin...meaning it is active in my body)...would this active insulin be affected by the charcoal? I asked because, I can't have my insulin be pulled from my body...I would have no way to know if it is still working in my cells and if I go high on my blood sugar I would be nervous to take more insulin, because if it was in fact still working and I took more, I could have serious problems with too much insulin floating around in there. So I asked would activated charcoal affect the insulin in my body. She actually did not know, but she said she would do extensive research and get back to me on it. And she did!!!

So my point is, she knows her stuff and when she doesn't she will freely admit she is unsure and she does her research to learn the answer.

For me, KL is an answer to my prayers. Her approach works for me. She makes me feel secure. That in itself is huge because prior to seeing this clinic my anxiety was out of control, a combination of the bacteria and the unknown. And most importantly she gives me hope that I will resume a normal life someday.

I also saw Dr J on my first visit. He got me through a serious problem with my lyme. Because he got me out of the critical state I was in, I felt confident to move forward with the NP.

Also, with my first llmd, I herxed every darn day for 8 to 9months without a break. Not one minute of a break. The amount of pain I was in was off the charts, the weakness, inability to care for myself, and I never ever slept a night longer than 1 hour. The response to me was to suck it up. Nothing to help any of those situations. I honestly considered killing myself several times because I did not feel I could go on like that. Not to mention, all that herxing messed with my anxiety levels, and my brain and thought processes. After switching to Dr J clinic, his 1st priorities was to get me stable. Pain relief was priority, getting my strength back and getting my rest....we still tweak things because stuff may work for awhile and then stop working...she is willing to work with me to achieve all of those goals. No more herxing like I was and the goal was to restore my speech. he accomplished both in 6 weeks. I have never herxed like that again. Now there have been some bad days or two, but never like it was with no break at all and no rest. Dr J and KL specifically stated they do not ever want me in that position of herxing again and if it happens I am to be on the phone immediately to tell them about it. If I have severe herxing where I can not care for myself or get off the couch for 2 days, that is unacceptable to them. The quality of my life has improved dramatically with Dr J and ultimately KL. For this I am forever grateful....I am healing without destroying my body and mind in the process.

Good luck to you Girlie, I know you are traveling a long way to go to this clinic.

Rest assure, if you don't gel with the practitioner you see, you aren't stuck there. You can ask for fresh eyes or a new practitioner. It is okay to do this. You can also make appts to see Dr J if you feel you need to. I never have after the 1st appt because I felt KL was doing so good for me. Dr J will be available for me, I know, if I feel critical again...but so far so good. I feel that I am happy and confident with KL so I will not take up Dr J's time to see me...he can concentrate his appts on those who are like I was...needing top priority care to get stable.

I don't mean to sell anyone on KL or this clinic. I just want to share my experience. My story is not anyone else's story, I know that. But because my experience has been so positive in their care for me, I pray others will have the same experience.

Scooterbuglyme
Regular Member


Date Joined Oct 2017
Total Posts : 135
   Posted 12/15/2017 8:15 AM (GMT -6)   
Is this in dc

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 12/15/2017 9:07 AM (GMT -6)   
Yes, it is in DC.

Joee - I agree with what you said about meds/supplements - KL really knows.

Also, so far every practitioner there has no qualms about saying they don't know but will look into it. They also don't hesitate to say "I want to run this by Dr. J" as well.

We have just by nature of when we are available to book appts, and the change in ped NP there, seen several practitioners and all have been good. You can stick to one or try others but if you like the first one you meet, you are good to go.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 12:51 PM (GMT -6)   
Thanks everyone for your input.

Wow...I am really feeling good about this decision.

joee - thank you so much for the in-depth post....


Now, I just have to coordinate things....and tell my husband he's going on a trip with me. tongue
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 798
   Posted 12/15/2017 1:01 PM (GMT -6)   
Rikky1 said...
My wife sees KL she likes her. I think Hoagie saw AW he said he liked her.



Yeah. I saw AW. She was good. She is only there once a week. Has a practice in Asheville that she runs the rest of the time.

Hope all goes well, Girlie. How far away from DC are you?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 1:09 PM (GMT -6)   
Hoagie said...
Rikky1 said...
My wife sees KL she likes her. I think Hoagie saw AW he said he liked her.



Yeah. I saw AW. She was good. She is only there once a week. Has a practice in Asheville that she runs the rest of the time.

Hope all goes well, Girlie. How far away from DC are you?


I am on the West Coast of Canada - so I'll be flying across Canada first to Toronto...and then taking a second flight from Toronto to DC.
Hubby already asked me if i had a friend that would want to go with me. cry

He hates flying...and on top of that he doesn't want to be in Washington, DC . Has no desire to see it...be there...

I would most likely have a 'taker' if I asked my friends...but I think I want my husband...I may be quite emotional during the appointment.
It's been a long haul (although not long compared to so many people) ...and I woke up this morning feeling really crappy...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 12/15/2017 3:32 PM (GMT -6)   
Girlie, I'm going to send you a private note to avoid being political here but I totally understand your DH. It will have some hotel recommendations for you to consider too.

Post Edited (yancync) : 12/15/2017 1:43:17 PM (GMT-7)


joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 12/15/2017 3:41 PM (GMT -6)   
Ha Girlie,
When I go to DC I get in and out as fast as possible. No desire to tour the city. Nope. haha

Although where the clinic is located, it is very nice. Great restaurants. Walkable. Clean. There are gluten free places to eat and a take out salad place that always has a line out the door. I can look up the name if you want. Nom nom

If you don't want to rent a car, you can get a metro from reagan int airport to dc. The metro is safe. Depending on where in the city you stay, you can also take the metro to the clinic.

If you have any questions about the city, the clinic location, where to park, hotel, anything just give me a shout out.

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 12/15/2017 4:05 PM (GMT -6)   
Girlie, I have no input other to say, I'm so happy you're going and I can't wait to hear about your progress­čśŐ
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast & leaky gut.Restart Buhner for BBB.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:13 PM (GMT -6)   
yancync said...
Girlie, I'm going to send you a private note to avoid being political here but I totally understand your DH. It will have some hotel recommendations for you to consider too.


Oh, you read between the lines? lol...I was trying not to be political either.

Funny thing is I was out with a friend xmas shopping last Saturday - and she was saying she had some airmiles she could give me.
Then we discussed a LLMD in California and she said something about if I was to go there, she'd come with me...but not Washington, DC. (She'd rather go somewhere sunny...lol...not the real reason)

Thank you for emailing me - I will take a look at my emails in a few hours...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/15/2017 2:19:11 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:17 PM (GMT -6)   
joee said...
Ha Girlie,
When I go to DC I get in and out as fast as possible. No desire to tour the city. Nope. haha

Although where the clinic is located, it is very nice. Great restaurants. Walkable. Clean. There are gluten free places to eat and a take out salad place that always has a line out the door. I can look up the name if you want. Nom nom

If you don't want to rent a car, you can get a metro from reagan int airport to dc. The metro is safe. Depending on where in the city you stay, you can also take the metro to the clinic.

If you have any questions about the city, the clinic location, where to park, hotel, anything just give me a shout out.


Oh, jeez - forgot about transportation from airport to DC. I was thinking taxi - but maybe it's too far to be affordable.

I saw on Dr. J's site that there are hotels close - like a 5 minute walk only...I'm thinking that would be the least stress. Not sure I want to navigate the metro system. I come from a fairly smallish city, so that might be something I want to stay away from.
It's cold here now, so we will be prepared with warm jackets, gloves, etc.

Good to know there are restaurants nearby the clinic...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:22 PM (GMT -6)   
Purrrsiankitty said...
Girlie, I have no input other to say, I'm so happy you're going and I can't wait to hear about your progress­čśŐ


Thanks PK. I don't expect progress to happen right away.

I'm getting excited about going. I just called them...and they said Dr. J. could pop in for 10-15 minutes - I wanted him to know about some 'findings' on my brain and spine mri's.

They (the clinic ) told me they like patients to be there 3-5 days - for prescription filling, etc.

I was going to fly in the day before the appointment, and leave the day after...any reason why I need to stay?
I do have a Pharmacy here in my Province that will fill Dr. J'.s prescriptions...so anyone see any other reason to stay longer?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 12/15/2017 4:37 PM (GMT -6)   
do you have an actual date?
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast & leaky gut.Restart Buhner for BBB.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/15/2017 4:40 PM (GMT -6)   
That's exactly what we did. We flew in the night before and left early the next day. I am not sure if they are building in more time for you due the always possible inclement winter weather.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:43 PM (GMT -6)   
Purrrsiankitty said...
do you have an actual date?


Not yet. I have to look at my husband's work schedule...and see if I can book on a week that he has the Wednesday off as well (I think he has an earned stat holiday that he's booked in jan or feb)
in case we get back late Tuesday night...he won't have to go in Wednesday morning.
(He is off on S,M,T every week)


I'm just being a drama queen...this is a really big deal for me...lol.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:46 PM (GMT -6)   
PeppermintTea said...
That's exactly what we did. We flew in the night before and left early the next day. I am not sure if they are building in more time for you due the always possible inclement winter weather.


The receptionist said it was to fill the prescriptions. But, I have found a work-around and can have them filled here. Dr. J's office can fax the scripts to the pharmacy.

Oh, so you're not close by, either, PPT. (Sorry, I've forgotten)

Maybe mid February would be better than January as far as weather? Although, Feb can be pretty cold/icy too....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 4:47 PM (GMT -6)   
I called the office earlier and they said KL works Mondays, and KF works some Mondays as well.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 5:24 PM (GMT -6)   
alright - a bump in the road.


Passports have expired...jeez... So, I better book a bit further out - as end of January is not giving it enough time to be certain they will be ready.
Darn.

So, I think I'll book for February.

Darn, that's almost a two month wait....ugh....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2295
   Posted 12/15/2017 8:11 PM (GMT -6)   
Girlie, Don't worry time will go by fast and then you will be there. I'm so happy for you.

Take care, Jo

P.S. on February 19 th we have a holiday (Presidents day) in the USA, so just be aware places might be closed down that day.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/15/2017 8:14 PM (GMT -6)   
goshawk said...
Girlie, Don't worry time will go by fast and then you will be there. I'm so happy for you.

Take care, Jo

P.S. on February 19 th we have a holiday (Presidents day) in the USA, so just be aware places might be closed down that day.


Oh, okay - didn't know that - thanks.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 12/16/2017 7:37 AM (GMT -6)   
I saw TB. I think she is newest as she wasn't on the materials. I really liked her and found her knowledgeable but you know the issue I had with flexibility re: allergies, and her newness night be part of the reason. Can't say for sure as I haven't seen anyone else and don't know if they would be more flexible.

I'm sorry your trip had to be delayed a bit, but I agree you'll be here before you know it. I'd definitely avoid Presidents Day. I got the impression that the clinic encourages family members to come so they understand the scope and seriousness of things. Remember I'd be glad to help too however I can!
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