Seeking all Lymes/PANDAS parents

[kmom]

Dealing w/ PANDAS with my DD9 and DS6 since May. DD started w/ PANDAS suddenly. Just when I thought things couldn't get any worse, DS started up 3 wks after DD's dx. It's been quite a journey to say the least and just looking for some Lyme advice as I question it daily now.

 

-Both kids=low titers always but positive strep cultures last winter/spring.

 

-Dr. B found specific strep immuno def. Abx therapy since May (tried a few different ones and as of Sept 4th till present found Augmentin and Azith simultaneously worked best).

 

-Had 1st hdIVIg 3 wks ago. DD had been doing well since IVIg till last week when Dr. B said yank the Azit Tues. night. Fri. PM she was quiet and inward and Sat. AM woke up w/ mood lability, severe social anxiety and just off. She complained of a sore throat and stomach ache but no fever, no pus in throat (T&A surgery last April so no pus on tonsils) but still a pinkish/red throat. Upset by backslide, so I called Dr. B's office and he said get back on Azith.

 

-Sun. AM-DD had swollen eyelids w/ a hive or 2 and gray dark circles under eyes. I knew what was coming. That afternoon a 1-2 hr. crying meltdown w/ vocal tics as she cried and jumpy random movements...ugh, I can't express in words how much I hate to watch that even tho I knew it was coming.

 

-DS seemed affected by pulling Azith from Rx regimen to w/ more rage than normal but no throat or stomach complaints.

 

Mon.-DD neg. rapid strep and same type meltdown by 4pm

 

Would think DD was just exposed to a virus/bacteria but same thing happened 5 wks. ago when Dr. B yanked Augmentin from the mix. Both kids fell apart. So confused.

 

Both kids' Igenex "appears" neg. altho some events cause me to believe Lyme is a possibility (camping trip Aug. '09 both kids had strange looking flea-like bites all over trunk of body about 24 hrs. after returning home). Thus have an appt w/ CT LLMD (never know if name dropping is legal!) in Feb so far away! And wait listed for 2 other good ones in NY and Philly. But,just found another LLMD who is local for Dec. 16th appt.

 

Here are the Igenex scores from Aug. 30th 2010:

 

DD: IgM=41+, 58+

IgG=39 IND, 41++

 

DS: IgM=41 IND

IgG=39 IND, 41++

 

Dr. B was happy they were neg! I've heard band 41 means nothing. Do the others mean anything? The local LLMD receptionist told me that people need to be tested multiple times b/c Lyme bacteria is very different from other bacteria and HIV where it doesn't just hang out in the bloodstream always but in the brain tissue so it's so complicated. It's so hard to go off of anything but your gut and just take the time to rule it out even more. Any advice is gladly welcome! Do I just need to be patient and let PANDAS treatment (abx and more IVIg's) take it course?

[PacificMama]

Hi KMom,

 

I think given that you live in the #1 tick borne disease state, these infections are something you should certainly look into. Your children present with symptoms that fall under the symptom list of these diseases, and the Igenex tests do indicate that a clinical evaluation should certainly be done. No matter what the tests, lyme is always a clinical diagnosis. There are so many strains of bacteria, and so many different co-infection possibilities -- combine that with insensitive testing and lots of diagnoses get missed.

 

I'm so glad to hear that you will have the children evaluated by an LLMD. They will take a thorough history, do a thorough exam, and evaluate the symptoms. For sure you seem to know that you are dealing with some type of infectious problem as you see the effects of going on and off of abx. Perhaps you are already doing this, but keeping a detailed log of the symptoms, and what happens when you pursue various treatments, will be helpful in evaluating things. It is sadly common to see whole families impacted.

 

In the meantime, the best "TBD 101" presentation I can recommend is the recent presentation by Dr. Corson at the ILADS conference on pediatric tick borne diseases. She practices in PA, and I think you would find it very educational -- it speaks a lot about all of these infections, and how they layer, and speaks specifically to neuropsych manifestations. It's $20 for the DVD.

http://ilads.org/store/store_lyme_video.html

 

Here are 2 other slide show presentations by her, the first is her general presentation on pediatric lyme, and the second is specifically Neuropsych manifestations of tick borne diseases -- and it seems to be tailored specifically to the infections in PA.

http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf

http://www.lymedisease.org/resources/children_pdf/CorsonPsychiatryGrandRounds.pdf

 

Finally, here is the link to Pennsylvania lyme group, which is quite awesome:

http://www.lymepa.org/index.html

 

 

Good luck and keep us posted.

Mary

[momofgirls]

Hi kmom

I agree with pacific mama in that you really need to see a lyme literate doctor to rule out lyme. Also the local lyme doctor's receptionist that told you sometimes multiple testing is need because lyme does not hang out in the blood sounds well informed. I have spoken with others who have reported that they only tested positive sometime after treatment was started. A good lyme doctor will know how to bring it out if it is there. You do live in a high lyme endemic area and if it were me I would pursue further evaluation.

Good luck and keep us posted,

Kim

[MichaelTampa]

Some LLMD's would consider both of those IGeneX positive, along with enough lyme-like symptoms. Glad you're headed to one to check it out.

[kmom]

Thank you so much for those replies and Mary, what great documents! Thanks. I read till very late last night b/c I couldn't put the material away. It's scary & I guess good how my kids fit the mold so well w/ Lyme symptoms. Might be our missing puzzle piece. I question bites from a camping trip but still think if Lyme is in the mix, it's been around a lot longer, especially for my DS. In the past 3 years been to 2 dr's for joint pain and no one ever mentioned Lyme, only arthritis and growing pains.

 

I have a few more questions too if anyone wouldn't mind chiming in:

 

-If I possibly have Lyme, would a flu shot aggragrate symptoms? Kids' PANDAS docs said NO shot for them but DH and me, yes. Got it last Wed. Then Thurs. evening bad thigh aches. Since then knee joint aches...nothing horrific but present. I have a high pain tolerance but wonder if sporadic joint pain over the years was exercised induced or Lyme. These currents aches are not exercised induced...need to but spend too much time w/ PANDAS kids and researching...maybe it's just aches you get as u realize your body is gettin' a little older

 

-Kids' PANDAS neuro & immuno dr's didn't seem to care that my Myco P titers were 4.64 in June and 4.74 in Sept. It was IgM (I think). Said it meant previous infection. Will that matter to an LLMD you think?

 

-Off to the local LLMD.(Used to be 30 min away but ironically moved into my town a few months ago.) Receptionist said paperwork dropped off b/f Dec. 16th appt is greatly appreciated and to come by. Is there any way to ask if anyone recommends this LLMD? He's only $300 for evaluation...I say only b/c b/w the PANDAS appt's and tests and the fees for the other "Godfathers/mothers of Lyme" evaluations, this seems cheap. I just want answers from a good LLMD. Are we allowed to post dr. names? I'm new to the Lyme talks but notice it's taboo on some websites.

 

Thanks again!

[MichaelTampa]

Since lyme generally involves immune system dysfunction, I would think any vaccine COULD end up messing things up, or stirring things up, or something bad like that. Hard to know, but possible that is lyme getting stirred up, possible it is something else. I had a vaccine recently, not flu, and I feel fortunate it didn't mess things up at least that I noticed. I had pain in elbow and in foot before lyme treatment, it was mostly not there but tough when it came, it would be elbow for a few months, then move to foot for a few months, and then back.

 

I'm not aware of there being any guidelines on the names, perhaps we should, don't know. If you're Going to Doctor so-and-so, and just want any opinions on them, I don't see harm in posting the name IF it is public knowledge that this person treats lyme. Probably better if most opinions would be shared with PM. Another thing you could do is ask for any opinions via PM for a LLMD in such-and-such city, that would probably work pretty well, as it's not like there aren't dozens all over the place.

 

Yes, yes, my first LLMD appointment was $550, so I'd agree with ONLY $300.

[tpotter]

And, ours was "only" $250.

 

I agree, that I don't see anything wrong with posting the name of the doctor, but opinions should be given by PM. I've given names of docs before, but never an opinion directly on the forum.

 

Good luck.

[PacificMama]

Hi Kmom,

 

Glad you found the materials helpful. Also, if you look above in the Helpful Threads folder, there is another article. And info on finding LLMD. Yes, it is usually requested to not post full doctor names on lyme web sites. It's probably OK here to post the name or initial / geographic region and ask for opinions via PM. However, I'm not sure if you would find anyone here on this board. You can always post on the "looking for a doctor" board on lymenet, or call PA lyme group and ask for referrals. But for now, there's every reason you should keep this appointment with the LLMD as is. You're lucky to be going so soon, and the price is quite reasonable. At least you will likely get the proper tests run, and get a good opinion on things. In the meantime, if you get other good referrals, you could put yourself on the wait list in case you ever want to switch. And yes, I'm sure the LLMD will be interested in the myco tests.

 

I think most people with lyme, and most LLMD's (but not all certainly) would advise to avoid the flu shot. It certainly can be a trigger to symptom onset. But don't dwell too much on it. Just keep moving forward searching for your answers.

 

Mary

[kmom]

Thanks MichaelTampa, tpotter and Mary. Everyday I think how grateful I am to have this forum for advice. It makes the "bizzro world" I feel I live in, just a bit better b/c knowledge is power. I stopped by the local LLMD office yesterday b/c they asked me to bring in all labs thus far and the downloaded forms I filled out for their office. I think I have a permanent callus on my finger from all the forms I keep filling out. I was happily impressed by the looks of the office--VERY clean, professional front desk people, etc. The scheduler talked to me alone b/c I only have appt's for kids and since I could play a role in this too, I got myself an appt. It was for mid Dec. I reminded her that I live 2 miles away and that if an opening pops up I can be there ASAP! She then told me there's a person on the fence w/ an appt next Wed. and that she has till today at noon to decide to cancel. There's a chance I can have that appt next week. I told her if that's the case I'll move my DD to that appt. I need to choose the least functional child. So, fingers crossed, we get in next week. I said how the contamination OCD in DD is tough and with her going through a flare up (sore throat possibly linked to switching from Augmentin AND Zith to only Augmentin) she's missed school all week. She said how wonderful it is to bring the kids in while young to rule out Lyme b/c OCD runs strongly in Lyme and the stories of the OCD teenagers that come into the office are horrific. We stil have an appt w/ Dr. J in CT in Feb. and on a waitlist for Dr. H in NY and Dr. C outside of Philly but hoping this local dr. is helpful in ruling it out or treating us.

[kmom]

Update from my original post:

 

Saw LLMD today...again wasn't my first choice but a stepping stone while we wait to hear back from a top LLMD. He only could squeeze in one of my PANDAS kids today. So after much debate, DD won the golden ticket! Dr. didn't dismiss the idea of Lyme as a possibility esp. w/ all the Lyme-like symptoms that have appeared since Zithro added to Augmentin combo and IVIg (all in last 2 months). He suggested more testing...different testing. One thing that shocked me was that I thought co-infections came back normal. Not as far as IgM. But he pointed out my DD's Bartonella's IgG was was positive=1:60 Dr. B went over it quickly when we reviewed a lot of test results 6 wks ago and all I heard was neg., which yes, it's a "past" infection. But then when I got home tonight, I looked up my DS's test and his Bartonella's IgG and it was positive=1:80 Below are the WB scores that made me question Lyme more. So isn't that STRANGE that BOTH kids have been exposed to Bartonella and have the same major neuropsych and joint issues? BOTH had same suspicious (not bulls-eye rash) bites from a camping trip in Aug. '09. If anyone has any advice, I'd appreciate it. I'm so on the fence now. We're scheduled for IVIg Dec. 8th and 9th and I don't think it's a good idea now that I'm learning more. Could the fact the kids were on mult. abx's since May skew the IgM results in general?

 

The good news is, the nurse drew the blood right there. DD being tested for C6 Peptide, Elisa, SED and I suggested the CD57. He wasn't keen on CD57 but I said I have ins. and don't care if I pay out of pocket. I need answers and I've read some interesting things on CD57...better than Elisa.

 

He also prescribed Low Dose Naltrexone. I've heard a few good things. Anyone have info to share on LDN?

 

Thanks!!!

 

 

DD: IgM=41+, 58+

IgG=39 IND, 41++

 

DS: IgM=41 IND

IgG=39 IND, 41++

[PacificMama]

Hi KMom,

 

I've been completely busy with a project and not able to post much lately, but was glad to see your update.

 

I don't know if you've read some of the Bartonella postings here, but I did want to say that it is much more common that people would imagine. I have read that some doctors/researchers think it is much, much more common than lyme. There are several different strains, and they may present a bit differently (They do not all give the "stretch mark" rashes that are sometimes described... I think that is particular to one of the main strains). Yes, the neuropsych symptoms are typical to Bart.

 

Bartonella is transmitted via ticks, fleas, mosquitoes, head lice, biting flies, cat/dog scratches, and cat/dog bites. I have read that as high as 50% of cats carry the bartonella infection at one time or another in their life. I have also read that you can get it at some stages just from their saliva or skin.

And Bartonella is also transmitted congenitally in utero, from mother to baby.

 

Curious... did he prescribe or make any abx changes? Or are you waiting on further results?

 

Mary

[kmom]

Thank u MARY! I feel so desperate as watch these kids fall apart. I truly believe Bartonella is the reason we have this huge change in kids. Question: DS is scheduled for a T & A tomorrow and I am scared now that's going to be a mistake? Any advice? Anyone? Postpone till after new Lyme tests? He never was the strep kid. He was positive by chance when we tested family. Will it help him in the long run or am I jumping the gun. Dr. B says take out. Got an ENT to agree to do surgery. I'm so confused as the time ticks to tomorrow...No pun intended!

[PacificMama]

KMom,

Regarding the T & A for tomorrow, make a separate post so more people see your question.

Why did Dr. B say to do it? Because he has high titers? I think if there is no urgency, and it is easy enough to postpone and have done if you still feel it is necessary after more tests come back and perhaps you get more advice from this LLMD or another -- then perhaps that is the way to go. (but I have NO experience with this as no doctor has ever recommended this procedure regarding my children).

 

Thank u MARY! I feel so desperate as watch these kids fall apart. I truly believe Bartonella is the reason we have this huge change in kids. Question: DS is scheduled for a T & A tomorrow and I am scared now that's going to be a mistake? Any advice? Anyone? Postpone till after new Lyme tests? He never was the strep kid. He was positive by chance when we tested family. Will it help him in the long run or am I jumping the gun. Dr. B says take out. Got an ENT to agree to do surgery. I'm so confused as the time ticks to tomorrow...No pun intended!

[JAG10]

Kristie,

 

I will add that when I dealt with your ENT and we scheduled the T & A, he let me know I could cancel or postpone scheduling it, just let him know. So, I wouldn't be afraid you'll "miss your chance" if you don't do it tomorrow. He'll understand.