Help with Lymes tests & info

[ShaesMom]

Sadly-I'm back after almost two years. I see lots of familiar names from the PANDAS board-good friend Suzan, KeithandElizabeth, SFMOM, mama2Alex and pixiesmommy (WOW!) to name just a few. This time I need your help and advice. Shae has had major setbacks in the last six months and we are back in that place where as a family we are emotionally drained and feeling out of options. I'm exploring Lyme's based on Suzan's gentle encouragement to do so and because about 19 years ago I had the infamous bullseye rash on my thigh after a camping trip to Kansas. I also remember brushing off a teeny tiny tic from that leg when we were camping. In the last eight years I have had my own health issues arise but that is for another time.

 

We have known/suspected since the age of 2 that something was going on but couldn't convince the Doctor's. It took PANDAS to finally get the ball rolling. Just to get you up to speed where/what has been going for the last two years:

 

1/08 First signs of PANDAS-10 day abx tx cleared up sx

1/09 Separation Anxiety starts-other sx's show up over next few months

4/09 ASO titers 1200

5/09 Dx'd with PANDAS by Dr. K. PropABX started

6/09 Dx'd with Selective Antibody Deficiency-low Strep titers

7/09 HD IVIg sx's start improving

8/09 Start monthly LD IVIg - sx's improve every month

9/09 Dx'd with Eosinophilic Esophagitis (EE) Autoimmune illness of the esophagus usually caused by food.

10/09 Skin Testing-remove +IgE allergens from diet-total of 11 at that time

 

Winter of '09/10 minor PANDAS sx's when exposed to strep or other infections. 10 day abx of Omnicef clears up. No biggy!

 

5/10 Remove gluten & soy based on positive gluten intolerance results & Mom's intuition on the soy. BIG improvements. She actually has the best summer of her entire life and no health issues. Also remove Peanuts & fish as they are common EE triggers.

Postive blood work for EBV-no treatment by Doctor.

11/10 Endoscopy still shows EE. Picks up an infection the first week of November and another a week later. No longer the happy, funny kid.

12/10 I have Shingles the first week. She continues to pick up an infection with fever every week. Separation anxiety starts again.

1/11 Blood test + for Chicken Pox virus-Immunlogist assumes it is because she had two rounds of the vaccine at a younger age. Only attends 5 days of school this month because she is constantly ill with fever, headache, leg pain. Separation anxiety continues & minor raging starts.

We officially pull her out of school.

2/10 Move her bed into our room because she is no longer sleeping at night. No more separation anxiety but she is with me every moment. Raging continues as do headache,leg pain etc... G tube placed in her tummy and no longer eating foods orally due to EE. Receives formula via Gtube.

3/10 Headaches improve once food is removed. Anxiety & Raging continue and start to escalate. She is becoming more violent. States she is unable to control herself but knows what is happening. She can't stop herself. Very remorseful afterwards. Leg pain & fatigue become worse. No longer riding her bike again & always asking for Aspercreme.

4/10 Omnicef given but it takes 7 days before we see any changes. Returns to happy self for three days. After rx is stopped-raging starts again.

 

She has been on and off abx since November. Omnicef, Bactrim, PENVK (propabx until Jan) Keflex (propabx in Jan), Augmentin (SEVERE EE reaction to this med). Unfortunately, inactive ingredients in meds are one of her EE triggers so we have had lots of issues with meds in the last year. She has developed problems to Erythromycin, PenVK, Advil and Benadryl. Omnicef no longer seems to be working.

 

Her ASO titers in the last two years have NEVER gone below 542. We have had them done numerous times. AntiDnase was 218 in January with 170 being normal. Docs don't seem to care that her titers have never dropped. We have appts in the next few weeks with an ENT, Neurologist & tomorrow we see an Infectious Disease Doc.

 

So my questions are:

1) Did your kiddos ASO titers ever drop?

2) I know of at least three families that I mentioned above who have issues with gluten/dairy--Do others as well? Myself-GF/DF; son-GF; Shae-multiple food issues.

3) Have you seen severe raging with the Lymes?

4) Have you seen other Neurological issues?

5) What tests should I ask the ID doctor to run tomorrow? Should I make sure these tests are done by IgeneX lab vs someone else?

AND

6) Will monthly IVIg and all the abx screw up the test results?

 

Long enough post for now. Thanks everyone-I know I can learn a lot from all of you.

[KeithandElizabeth]

I will PM you!

 

Elizabeth

[sf_mom]

Geez.... so sorry to see you back around. Want to give you some quick answers to your questions. I truly think you need to investigate further given the current situation and happy to help in any way. We have two wonderful LLMD in Bay Area but there might be other Dr.s closer.

 

So my questions are:

 

1) Did your kiddos ASO titers ever drop? Yes our older DS ASO are within normal range. Other children's are resolving as well. It can be very slow process.

 

2) I know of at least three families that I mentioned above who have issues with gluten/dairy--Do others as well? Myself-GF/DF; son-GF; Shae-multiple food issues. Very common with Lyme/co-infection per our Dr.

 

3) Have you seen severe raging with the Lymes? Rages can indicate Bartonella is a co-infection. Younger DS has rages as a symptom and he is confirmed positive for both Babesia/Bartonella

 

4) Have you seen other Neurological issues? Of course...

 

5) What tests should I ask the ID doctor to run tomorrow? Should I make sure these tests are done by IgeneX lab vs someone else? You can start with basic western blot via labcorp tomorrow to see if any Lyme specific bands appear, binding immune complexes and cd57. All those tests should be covered by insurance and available via Dr. tomorrow. For Igenex you would need a test kit first. If there is any indication of Lyme I head straight to LLMD for additional testing/treatment.

 

AND

 

6) Will monthly IVIg and all the abx screw up the test results? It might and you could side step checking for antibodies by doing Dot Blot, Urine PCR with provocation or ART muscle testing.

Edited April 13, 2011 by SF Mom

[ShaesMom]

Rages can indicate Bartonella is a co-infection. Younger DS has rages as a symptom and he is confirmed positive for both Babesia/Bartonella

 

Will the tests you recommended tests for the coinfections as well?

[sf_mom]

No, the particular test recommended will only give you an indication that there is infection... maybe Lyme if you have specific bands present on WB results.

 

However, 80% of all children with LD do have a co-infections of some type: Babesia/Myco/Bartonella, etc. Many LLMDs prefer specific labs and why I'm recommending on holding off on spending any additional money until you are heading in that direction. With that said... I'd be looking for a good ILADS trained LLMD close to you now. One Dr. in CO and one in Iowa that many are seeing from the forum. They often have wait lists.... you can always cancel appointment if you find it isn't warranted in the future.

[ShaesMom]

We met and exceeded our deductible in January and copay in February! And now that she has a Gtube and is formula only she qualifies for the Medically Handicapped waiver program.... So bring on the tests-they shouldn't cost me a dime at this point.

 

What test do I need to request for the MycoPlasma (pneumonia ?)

[mama2alex]

My first thought when I saw you'd posted on the Lyme forum was "OH NO!" I've thought of you often and hoped your dd continued to do well. I'm so sorry she's struggling again.

 

I think you're wise to look into Lyme, but an ID doc may not help you with that, just so you know. With all the treatments she's had, the lab testing may or may not show what's going on. I would get her in to an LLMD (Lyme-literate MD) as soon as possible. A good one can diagnose it clinically and will be able to help with any strep that may be remaining in her body. I think you are somewhat near Elizabeth and I've heard she has a great LLMD, so definitely work with her to find a doctor.

 

Please feel free to email me any time.

 

Jennifer

[momaine]

So my questions are:

1) Did your kiddos ASO titers ever drop?2)

 

My dd never had elevated strep titers to begin with. She has now been diagnosed with LYME/Bartonella, a year into PANDAS treatment that did not resolve all issues. I do wonder if somehow, her autoimmunity has to do with Lyme rather than Strep. She has had sinus infections which were likley strep, but none diagnosed until she'd had PANDAS symtptoms for over 3 years already. (OR OMG, this just came to me....Dr. J said that my dd was positive for Lupus in the intial test and requires more testing that will be done on May 3rd. Maybe her autoimmune markers are for the Lupus and not strep? I haven't really gone down that road mentally, but it just came to me that that is a possibility)

I know of at least three families that I mentioned above who have issues with gluten/dairy--Do others as well? Myself-GF/DF; son-GF; Shae-multiple food issues.

 

About the same time that PANDAS symptoms began, dd began having sensitivities to dairy. It caused her to have excess phlegm which ran down her throat post nasal, and gave her stomach aches. Since beginning antibiotic treatment, she tolerates dairy much better.

 

3) Have you seen severe raging with the Lymes?

 

Dd rages when her OCD is particularly severe, out of complete frustration.

 

4) Have you seen other Neurological issues?

 

vocal and motor tics, milk maid grip, severe ADD at her worst times.

 

5) What tests should I ask the ID doctor to run tomorrow? Should I make sure these tests are done by IgeneX lab vs someone else?

 

I'd do a western blot and complete co-infection panel through Igenex

 

AND

6) Will monthly IVIg and all the abx screw up the test results? You can call Igenex lab and ask them. I can't remember for sure, but my dd has had IVIG every 8 weeks for the last 10 months and we still did that testing. I just can't remember at what point it was....I am thinking it was 7 weeks after IVIG and Dr. J thought that was good.

 

 

Long enough post for now. Thanks everyone-I know I can learn a lot from all of you.

 

I'm sorry you are finding yourself here again. A lot of people are finding Lyme as the root cause of autoimmune issues. It's a long road, but our Lyme dr. believes he can get my dd well, and I have to trust that at this point. We're 10 weeks into Lyme treatment and its still very difficult. Employing lots of things to help her body detoxify to help with the herxing. Best of luck to you!

Edited April 13, 2011 by momaine

[sf_mom]

Call Igenex and get order form for Dr. to sign tomorrow.... you can always do blood draw at later date through Labcorp when kit arrives. I'd start with Igenex WB and co-infection panel that includes Babesia, Bartonella, Ehrlichiosis, etc. Infectious Disease Dr. can order mycoplasma from his preferred lab.

 

Here is a symptom list for Bartonella.

 

Aggression

Agitation

All Psychiatric disorders

Bartonella Causes over 200 Body Problems and Can Harm Any Organ

But Some Patients Have No Clear Symptoms

Confusion and Cognitive Troubles

Depression and Anxiety

Dizziness

Dozens of Types of Rashes

Drowsiness

Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage

Fainting

Fatigue

Headaches

Impulsivity

Irritability

Joint Pain

Kidney, Bladder, and Urogenital Disorders

Lumps in the Skin

Memory Problems

Migraines

Muscle Spasms and/or Weakness

Numbness or Loss of Sensation

Oxygen Deprivation

Panic Attacks

Physically or Verbally Violent behavior

Polyps in or on Major Organs

Profound Sensitivity to Medications

Sleep Disorders

Treatment Resistant Addictions and Compulsions

Tremors

Upper and Lower G.I. Tract Disorders

[Suzan]

A quick note from me regarding IVIG. Igenex told me to wait 4 weeks after IVIG. I was just under 2 days of that 4 weeks when we got dd9's blood draw. Her first test was IND but suggested lyme. I always wonder if the IVIG screwed with it a little but there's no way to know. Even though she was the sickest of us at the time, maybe she was not mounting a response until later after some treatment.

 

BIG HUGS from me.

 

Susan

[ShaesMom]

Thanks Wendy.

 

She is scheduled for IVIg on Friday.

[smartyjones]

Postive blood work for EBV-no treatment by Doctor.

12/10 I have Shingles the first week. .

1/11 Blood test + for Chicken Pox virus-. . . Separation anxiety continues & minor raging starts.

Raging continues as do headache,leg pain etc... .

3/10. Anxiety & Raging continue and start to escalate. She is becoming more violent. States she is unable to control herself but knows what is happening. She can't stop herself.

 

 

shaesmom -- i'm so sorry to read your story and admit there is much there i don't know about - like EE - so, of course, anything i say may or may not be valid.

 

i seriously question the role of viruses and other infections in the whole PITAND reaction. you mention, i think, 3 herpes viruses in your/her history. i don't know that traditional medicine has good ways to deal with viruses -- i think most think the available meds may not be that effective (i certainly could be wrong about that). i'd say discuss those infections with the ID doc and see if he has opinions on their role.

 

my ds sees an integrative MD who diagnosed multiple infections, incl lyme, strep, toxoplasma, CMV, last March. ds is doing fairly well but tends to wax and wane. we saw an uptick in aggression toward brother and a type of neediness concerning the bathroom (me having to get TP, put on pants, be in the room) that i think is a form of separation anxiety. our dr does a form of ART. at the appt around this time, ds had a resurgence of CMV. other infections quite clear but that one causing trouble. these behaviors have had very good resolution in the past month or so. he has appt in a couple weeks. certainly interested to see how he tests then.

 

i didn't remember this until i got medical records after onset. it couldn't have been that bad of a reaction b/c i didn't remember but there was a note in there that i called b/c i thought ds was having a reaction to the chicken pox vaccine. i've seen it mentioned here before that others have also.

 

i think viruses, esp herpes, may be an underexplored source of trouble. i think a LLMD would be skilled at handling the multiple infections.

 

good luck with appt.

[pixiesmommy]

I don't know what to tell you. It's all too confusing and I can hardly wrap my brain around anything these days. I just wanted you to know that I did read this though and get your PM and love you. I'm sitting here with tears in my eyes- I had hoped you all were better and this was a thing of the past for you. If you need to talk, you know you can call- I'll always have a shoulder for you.

[dcmom]

Shaesmom-

 

I don't really have anything to add, other than support. You are/were such a valuable forum member- I too had hoped you and your daughter were off living and healthy.

 

I have found lyme to be more complicated, in our case, than pandas. I think it would be important to find a doctor who treats lyme, who you have some confidence in, at the start of you journey. We have looked into lyme, but my kids seem to fit much more neatly in the pandas box, in all ways. But- we really don't have physical symptoms, which it sounds like your daughter does. IMHO, after all our kids have been through, a couple months of an antibiotic cocktail to see if it helps, is not a bad idea.

 

I hope you find some answers soon.

 

Eileen

[ShaesMom]

Thanks for all the kind words! My time away from ACN has actually been spent on the forum for EE and learning how to manage it.

 

The ID Doc appt today was a total waste of time. We were there for less than 5 minutes when she started on her PANDAS speech. I immediately interupted her and asked if she believed in it. She rolled her eyes and grimanced and said "We'll get to that later." Of course by the time she was finished it was quite clear that she did not believe in PANDAS. The rest of the appt did not go any better. It was obvious that she had made her mind up before even seeing us that she was not going to do anything for dd. At one point she made a comment that led me to believe that she might have even thought I was there looking for more abx. She never took the time to ask any questions about what has been going on for the last six months. In fact, she never really took her nose out the lab results she had copies of. And she kept checking her pager every time it went off!!!! Anyway, by the end of the appt I was angry and extremely rude to her. I told her I would send her copies of the labs when someone else found the infection that was causing dd's on going sx's. She had the nerve to tell me to bring her in the next time she had a fever and maybe they could help her!

 

And she had the nerve to discount her leg pain because "there is no redness or swelling and she seems to be walking just fine." The good thing is she got the "Mommy Warrior" in me all fired up again and I'm ready to go to war!!

 

I did a lot of reading last night on Lyme's sx's and the connection with gluten intolerance & Fibromylagia (both of which I have). I have so many of the other symptoms myself that I made an appt with the GP on Monday to sign the Igenex form. I can't do much for Shae right away since she has IVIg tomorrow but I figure I can look into whether or not I have Lyme's. The bullseye rash I had was years before the kids were born.

 

My husband seems to think it all makes sense and for once is on board without any convincing. In fact, he "lovingly" told me tonight that my brain fog has definitely been back in the last few weeks. Apparantly it was quite bad yesterday. I know my leg/muscle pain has been back with a vengenance as well.

 

So it looks like I'm back for the long haul!