Pans and started with Integrative MD~ seeking feedback

[Thesuzie]

Hoping for some feedback. This story is too long, so I will try to only hit the highlights. DD 12 has gotten progressively worse for the past 2 1/2 yrs. Diagnosed with PANDAS April 2013 (only bc I couldn't find a dr) and PANS Dec 2013. Over the past year, she has been on Cefzil, augmentin, azithro, bactrim and now doxy. ASO has fluctuated over time. Currently normal. AntiDNAse have been very high, most recent test was 1070 (normal 170). While on antibiotics, her tics subside, but her other symptoms are severe. She no longer has repetitive strep or chronic sinus infections. However, often complains of sore throat.

 

Symptoms from worst to least are; joint pain, fatigue, OCD, chest pain (previous), inability to concentrate, irritability, light sensitivity, dilated pupils, skin sensitivity (rashes and nighttime itchiness), tics, jerks in her sleep, drooped eye lid. OCD includes perfectionism, compulsions with even #'s, separation anxiety, and a belief that the floor is unsafe. She has not put her feet on the floor in months. There are other ocd symptoms but these are consistent. We started CBT 2 months ago.

 

IGG, IGM and subsets were first tested in July 2013 and low. Ivig was recommended but never coordinated by the treating dr. Her levels decreased over this past year and the request was approved by BCBS in Dec. We did HD in Jan and March and next one is scheduled for May. She had 10 great days after the first infusion, but Dr. T said it may have been the steroids. No improvement after the 2nd. DD also had bad headaches, increased tics and horrendous restless legs after infusions.

 

We initially started our journey with a neuropsychiatrist in NYC, we then went to Dr. B and are now with Dr. T. I also see an integrative MD. The integrative MD said he is treating her for PANS, CVID, viruses (coxsackie, hsv, hhv, myco, and candida) and believes she has parasites. We have not yet done stool testing. She recently broke out with a rash on her arm which I thought was eczema. It was long a narrow. At the same time, she also had the butterfly shaped rash on her face that looked like hives and a sunburn kind of rash on her hands. This all happened after about 10 mins in the sun, so I thought it was a reaction, Integrative MD did not agree. He said his next step is to do an MRI, thinks her inflammation is out of control. He also wants to focus on parasites?

 

Igenex IGM results ** 23-25, **31 IND, **34 -, **39 IND, **41 IND. IGG results are same (bands and **) with 39 + and 41+++. These results have been read by above dr.'s and I have been told they are negative. However, I live on Long Island, NY, so lyme is common. Dr. B prescribed bactrim due to clinical presentation. DD took this for approx 60 days and developed tremors. Hand shaking, internal tremors and a drooped eye lid. Dr. T stopped the bactrim in Dec 2013. Tremors have improved, but are not gone.

 

23 and me results came back with MTHFR A1298C hetero. MAO and MTRR are homo. VDR, MTR, BHMT, AHCY and CBS are hetero. She has high ammonia, glycine, 3met histidine, lactate. Low VitD, pyruvate and copper.

 

Integrative MD ordered weekly IV leukovorin, b6, mb12, glutathione, lysine, VitC, calcium & magnesium, NAC and solumedrol. Prior to this, she was on 2mg daily of valtrex for the past 5 months (this helped her chest pain enormously). She has only had 4 infusions so far. We have not seen any improvement but she is not worse. The only new symptoms was jaw pain today. Her oral supplements are IGG 2000 df, ProDHA 1000 2 caps daily, VitD 5000 and Alpha Ketoglutaric 300mg. Probiotic (ortho molecular products) 225 billion - 1/2 sleeve daily and klaire sacch B 3 billion daily.

 

Current meds are doxy (200 daily), celebrex (200 daily), fluconazole 200 daily. She is on a yeast free diet with no dairy, but its hard to stick to it!

 

DD has been homebound since Thanksgiving. She lives in pain, but her symptoms do fluctuate. On a good day, she can do school work and go on the trampoline for a little while. On a bad day, she can not walk and will tell me that I hate her 1000 times. She also has some superficial self injurious behaviors which we are addressing with the psychologist.

 

Sorry about all this info, just so overwhelmed. Not sure if I am going in the right direction or what else I can do? Any input would be greatly appreciated. I also sent a packet into Dr. O in ct to schedule a 2nd opinion appointment.

[dcmom]

Has she been tested for lupus?

[rowingmom]

http://lymemd.blogspot.ca/2009/02/understanding-western-blot.html

 

http://www.anapsid.org/lyme/wb.html

 

kDa 39 is specific only to borrellia. Most LLMDs would consider any reaction on this band indicative of lyme infection. If your daughter has not been tested specifically for the coinfections (bartonella, babesia, ehrlichia, mycoplasma, RMSF) she should be. The PANDAS (caused by strep) specialists are not educated on Tick Borne Diseases. Please find someone who is.

[searching_for_help]

I'm sorry I don't have time right now to read your story carefully, but wanted to mention my dd is on Doxy and Valacyclorir (antiviral), and she also has the sunburned look on her hands, and also her nose (She looks like Rudolph...) My hubby is a pharmacist and says it is probably from the Doxy - some people (not everyone) can have a reaction when in the sun. Her hands get itchy and also sometimes feel like they are burning from the inside. Also weird sensations like cold drops of water hitting them. This occurred after she started the Doxy, and is beginning to subside some.

 

Also, my dd has the bright red butterfly (malar) rash across her nose, but she's had that off and on for years, BEFORE the Doxy. It's very smooth, no raised bumps of anything - it just looks very hot and red. We've mentioned Lupus to docs before, but they don't seem to be concerned about that. Not sure why, they know her immune system is screwed up.

 

I so hope someone on here can give you some ideas to give you all some relief.

[Hopeny]

Sorry you are going through this. To echo what rowing mom said, according to ILADS diagnostic criteria and research your Lyme test results indicate reactivity to Lyme specific bands on the western blot. I'm not a doctor but some of the symptoms you describe are extremely similar to what we have experienced from Lyme. Cardiac complications are well documented from Lyme. Regarding the rash on the hands, I urge you to do some research on the symptoms of rocky mountain fever, anaplasmosis and ehrlicia, Lyme co infections. In contrast to Lyme which is difficult to test for, these are easy to test for with standard labs.

 

With all due respect to Dr T, whom I do not know, based on posts I have read he does not seem to have the experience with lyme patients to be able to rule it out. I admire Dr. B. and he is gaining more experience but not quite there. regarding the butterfly, as far as what I have read that is a hallmark lupus symptom, again you need the appropriate testing (ANA etc)/expertise to diagnose. Dr O is excellent and I am sure she can help with your questions, including Lupus. While she is not our primary Lyme doctor, based on my experience with her she has enough experience with Lyme to recognize and treat it. She has the advantage of traditional medical training at top institutions with many years of practical experience in integrative medicine.

[Thesuzie]

Thank you all for these responses. I am not home now to review her test results but I know she has had negative ANA, sed rate, cpk but +mycoplasma in the past. When she developed the rash, we took her to the walk in ped center and the Dr said it looks like lupus. I googled pic's and that was exactly it. The integrative md said he will focus on treating her inflammation, but did not explain how?

 

I have also been to a local LLMD (supposibly) who wasn't too helpful, he actually ordered the ingenex but when we went back with the plan for ivig, he seemed put off.

 

In addition, she did see a well known pediatric rhuematologist in NYC who said she had CFS and must learn to live in pain.

I will definitely pursue Dr. O, I saw her at a recent conference and really liked her.

[SSS]

Just a few things that popped out at me, my personal .02 cents:

 

She is getting steroids? (IV solumedrol) This can be very detrimental to someone with an active infection, as a steroid shuts down the immune system and therefore allowing infection(s) to flourish.

 

I didn't understand the WB results how you posted it: ** meant positive or nothing there?

Regardless, my gut says tick borne infections based on what you wrote.

 

When I was on Doxy, I actually got my hands sunburned through the car windows, and my face burned from briefly outside.

It is not a typical sunburn, more like a chemical sunburn, and was miserable! Took weeks to go away, face looked like a clown, then peeled for 1 month. The hands hurt for a good while.

 

You say dairy free, what about gluten free 100%? That can ease inflammation.

Again, my .02 cents, a good LLMD to start over again, get on a combo of antibiotics (off Doxy for summer)

concentrate on gut health, slow the rest down- too many cooks in the kitchen?

 

Hang in there---- you have done amazing getting her to the specialists you have.

P.S.

My LLMD believed once bacterial infections were under control, the body could then take care of/ handle viral infections the body may carry.

[JuliaFaith]

Not much time to answer, but definitely agree with anti-parasitic treatment (it usually includes worms). Because of experience with anti-fungal would think about doing an ERMI on home or look into possible 'mold.' No one wants to do this but can help significantly with healing.

 

Also, hoping you are doing some kind of oil (fish/primrose etc.) for inflammation, and addressing detox (chlorella etc.) as you are killing off a lot at once. We take 1 capsule a day of activated charcoal (when ill) at bedtime which also helps mop up toxins and gets rid of them (can remove vitamins/minerals so make sure getting some of those in as well).

 

Good to see you have some great doctors!

Edited April 30, 2014 by juliafaith

[LNN]

Agree with SSS - I thought "lyme" based on the symptoms you list before I even got to where you mentioned Igenex. Dr B told me my son didn't have lyme based on similar Igenex labs - 31, 34, 39 and 41. Our LLMD disagreed and we saw significant improvements once we started treating for lyme with combo abx rather than only one abx at a time. (HD IVIG didn't help my son). Dr B's current patients say he's learned much about lyme since we saw him several years ago, but in your case, I think you need another opinion. I don't see how you can't be suspicious of those results when paired with your symptom list.

 

Haven't seen Dr O but hear great things about her. Tho I believe she knows Lyme I'm not under the impression she considers herself an LLMD. We see an awesome LLMD in central CT. PM me if you want his contact info.

[sf_mom]

I would also suspect Lyme based on her current symptoms and test results. I would also have her properly evaluated for mold related illness. Those that have a mold issue don't often make much headway with antibiotic therapies and suffer from a lot of inflammation.

 

If you are unsure of the possible Lyme diagnoses you can always do further confirmatory testing. Perhaps ask Dr. T to authorize the Epitope Band 31 Test via Igenex... That particular tests looks for the antigen of Lyme specifically for band 31 in which you have an IND. Igenex keeps blood samples for several months and would only require a phone call or faxing of order slip if she was tested recently.

 

LLM does have a wonderful LLMD and is close enough to help. He could provide confirmatory Lyme testing, testing for co-infecitons, mold evaluation and integrative approach to Lyme treatment.

[Hopeny]

Thank you all for these responses. I am not home now to review her test results but I know she has had negative ANA, sed rate, cpk but +mycoplasma in the past. When she developed the rash, we took her to the walk in ped center and the Dr said it looks like lupus. I googled pic's and that was exactly it. The integrative md said he will focus on treating her inflammation, but did not explain how?

 

I have also been to a local LLMD (supposibly) who wasn't too helpful, he actually ordered the ingenex but when we went back with the plan for ivig, he seemed put off.

 

In addition, she did see a well known pediatric rhuematologist in NYC who said she had CFS and must learn to live in pain.

I will definitely pursue Dr. O, I saw her at a recent conference and really liked her.

May I ask was the NY rheumatologist a woman named Dr. I...? If it was just my experience she was the worst, most condescending MD I have ever seen. She misdiagnosed my DD and I blame her for my daughter's illness getting worse. Pathetically I was told she was an expert in Lyme. Her suggestion was to put my then 8 year old on pain and psych meds. Anyone that tells you a child has to learn to live in pain is not only incompetent but a sadist, JMO and other MD's I have spoken to about Dr. I.

[nicklemama]

I would recommend finding an ILADS trained LLMD. You should have some choices in your area. I have been on doxy for approximately 9 weeks now. I have a red rash on my neck that is itching and driving me crazy. The tip of my nose looks like Rudolph too. Saw my LLMD today and i'm switchng to minocycline for the summer ( I have Lyme, as well as my 10 yr old PANS son).

 

Did I read it correctly that a doctor has diagnosed your 12 yr old daughter with chronic fatigue syndrome? I'm no doctor but I find it incredible that a doctor would diagnose chronic fatigue in a child and not try to get to the bottom of it. I wasn't aware children could be diagnosed with CFS. I was diagnosed with rheumatoid arthtritis, chronic fatigue and fibromyalgia. My fatigue is getting much better with Lyme treatment and my joint pain is nearly gone.

 

My son was treated for PANS for 2.5 years and he did get better but he did not get really well until appropriate Lyme treatment. I have been treated for Lyme for 9 weeks and I can't begin to tell you how much better I feel. If your child is not getting better with PANS treatment by some of the best PANS minds, move to Lyme treatment. Her Igenex is highly suspicious looking.

[mama2alex]

Her symptoms scream Lyme and coinfections. Joint pain, fatigue, chest pain, light sensitivity, rashes and droopy eye are not and never have been symptoms of PANDAS. You just can't rule out Lyme based solely on testing, and any doctor who tries to do so doesn't know much about Lyme. My son and I had negative western blots repeatedly, but both were positive on the Advanced Labs culture and are improving with Lyme treatment. Please find a well respected LLMD and get a 2nd (5th?) opinion.

 

Also wanted to mention that I also got the "sunburn" with Doxy and at another point in treatment I developed a rash on my face. When I described it on Google, it came up with Lupus, which had already been ruled out. Lyme has been called the "great imitator" because it's symptoms can look like so many other illnesses.

 

Don't get discouraged. We saw 12 doctors before we got to a Lyme doc. Then when we realized mold was an issue, we switched again to an LLMD with more mold experience.

[ktdommer]

My son was bed bound and in constant pain before treating for Lyme. He is physically so much better. I would definitely go with an ILADS a doc. My doc would read your son's IgeneX results as positive for Lyme.

I wish you the best!

[ktdommer]

Forgot to add that I would have Lupus rash on face. Diagnosed with Lupus in 1999. Treated Lyme for 2 years before all rashes and ANA became normal. Don't believe I ever had lupus.