Feedback needed re: DX of PANDAS

[cynditk]

Hi all,

Just want some feedback here to see if we are on the right track. According to DR.K's criteria we fit for PANDAS/PITAND, but I don't know, my son presents so atypically. He is 16, and also has an immune deficiency. Back in March he had overnight onset of severe anxiety- he withdrew to his room and wouldn't come out, and was so anxious he couldn't even talk to us at times. He stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. He did not go outside for several months except to go to DR's visits. We suspected PANDAS mainly because of overnight presentation. He has had some mild OCD like always wanting doors closed. No real tics, no real rituals, compulsions. We started him on Zithromax daily and gradually all his symptoms began to fade. We are 3 months out-up to 1000mg daily zithromax- and he is acting mostly normal again- he still gets anxious now but is not consumed by anxiety, and is slowly starting to venture out into the world again. Beth Maloney said she didn't think the Zith was actually treating pandas and suggested Augmentan. This week we tried IM penicillin and took him off zith- after three days he has begun to go downhill and experience anxiety again. He also suffers from a wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation. Unfortunately we cannot test accurately for a bunch of stuff because he's on IVIG for immune deficiency, but I am thinking maybe we are barking up the wrong tree and maybe he has mycoplasma and Lyme, and not PANDAS?

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[sf_mom]

The rate of relapse or downhill slid when switched from Azithro to IM Penicillin could be an indication of a co-infection to Lyme of Bartonella/Babesia. Typical relapse for Bartonella is less than a week. High anxiety is also 'noted' symptom of Bartonella. Low grade fevers are also a symptom of Bartonella and Babesia depending on the time of day that they are abnormal.

 

You can test for Lyme by provoking and looking for DNA or antigens 'not antibodies' in the urine. By testing with this particular method you eliminate cross reactively of antibodies for specific bands and potential concerns over the donor antibodies via IVIG. However, you are depending on him to shed die-off into his urine. But his urinary issues point to it residing in his bladder.... Lyme loves the bladder. You can contact Igenex to get a better understanding of this testing method and you will need the guidance and support of a Dr. Additional antibiotics or herbal protocols are required to create the die off.

 

The Bartonella and Babesia PCR (DNA match) and/or FISH (blood smear for Babesia) do not look for antibodies either. Again, Igenex can help assist with specific tests.

 

I do believe making an appointment with an ILADS trained Dr. close to you would be invaluable for assistance with testing and potential clinical diagnoses.

 

I've attached a decent symptom list for Bartonella.

 

Some Signs and Symptoms

of Possible Chronic 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

[LNN]

I second Wendy's post. I too was going to suggest non-antibody tests such as the urine or FISH panels, with guidance from a lyme-literate doctor (LLMD). LLMDs are not cheap and some are not covered by insurance. But if there's lyme, it may take more than IVIG alone or in conjunction with only one antibiotic to get you to 100%. Best to do some digging or you'll always wonder and in the end, testing with an LLMD could save you a lot of money.

 

One thing that isn't clear from your post is whether your son has struggled with these symptoms in the past (e.g. did he have low levels or sporadic OCD earlier in life) or was this sudden onset the first episode? if the first episode, it would put more weight on a non-Pandas diagnosis. Nearly everyone on this forum comes from the Pandas world, so it's not like I don't believe in Pandas. Only that sometimes it can be more complicated than just strep. It's unfortunate that some advocates and some doctors who devote enormous energy to treating kids with an under-researched, misunderstood but very real disease (Pandas) dismiss tick-borne illnesses so readily and are so reluctant to entertain their roles in sudden-onset neuropsychiatric symptoms. I don't think everyone has lyme, but I do believe it's important to rule in or out with medical testing and clinical response, rather than make assumptions based on personal beliefs or experiences. (ok, off my soapbox now).

 

One other bartonella symptom I don't see on Wendy's list is asymmetrical swollen glands. My son had this for 2 years and 3 Pandas doctors didn't know what to make of it. This went away shortly after treating my son for Bartonella.

 

You are of course asking a group of people who are biased toward lyme. So I'm glad you asked the same question on the Pandas forum for balance. In the end, you have to go with your gut. Neither disease is well enough understood and neither has definitive testing to help you chart your course. But please feel free to ask additional questions and we'll help you try to sift through what must be a very painful and confusing time.

[momaine]

Knowing what I know now, I'd second the recommendation to see an LLMD to rule in or rule out other infectious agents that cause these symptoms. Initially we thought my dd was classic PANDAS, with the exception that she had never been diagnosed with strep throat. She did have a few sinus infections and sinus drainage issues that we discovered when she was diagnosed with PANDAS, but not with typical symtpoms. She had only drainage down the back of her throat and slight headaches.

 

By the time she was diagnosed with PANDAS, everything made her symptoms worse. (cold, flu, sinus infection, H1N1 shot, etc.) We felt we were on the right track with a negative Quest western blot and a positive reaction to prednisone. I didn't realize that you could have lyme with only one lyme specific band positive or IND. When she did not respond the way we wanted to multiple IVIGs, we ended up pursueing the possiblilty of Lyme. (first two ivigs were wonderful, but she couldn't maintain it)

 

She had one specific band positive and a couple other bands that were either IND or low positive. She tested negative for Bartonella, but our LLMD is treating her for both Bartonella and Lyme and she is making progress. She really herxed at first for an extended period of time but I knew we were on the right track because when we would take a break from the antibiotics for 24-48 hours, she would improve significantly. Her symptoms still cycle to some degree.

 

Don't put all your faith in the tests, however, as they are not overly sensitive. Lyme is a clinical diagnosis and with the symptoms he has, it is certainly possible that he'll respond to lyme treatment even if the tests are negative. There are many reasons that testing is false negative. You can google false negative lyme tests and find many reasons they come out as false negatives.

[ShaesMom]

immune deficiency. overnight onset of severe anxiety-stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. No real tics, no real rituals, compulsions. wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation.

 

You've just pretty much described my dd9 with the exception of her daily headaches and her GI issues. She receives IVIG every 4 weeks for her immune issues.

 

Has your son been dx'd with CVID or something else?

 

We spent years trying to get someone to listen about the constipation, UTI's and fevers. No one did until the PANDAS symptoms kicked in around age 6. No one could ignore us then. Managing the PANDAS and IVIG helped for about 18 months and then she took a major backslide. We found out a few months ago she has congitial Lyme.

 

 

Great advice from the other Mom's. Good luck finding answers.

[cynditk]

immune deficiency. overnight onset of severe anxiety-stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. No real tics, no real rituals, compulsions. wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation.

 

You've just pretty much described my dd9 with the exception of her daily headaches and her GI issues. She receives IVIG every 4 weeks for her immune issues.

 

Has your son been dx'd with CVID or something else?

 

We spent years trying to get someone to listen about the constipation, UTI's and fevers. No one did until the PANDAS symptoms kicked in around age 6. No one could ignore us then. Managing the PANDAS and IVIG helped for about 18 months and then she took a major backslide. We found out a few months ago she has congitial Lyme.

 

 

Great advice from the other Mom's. Good luck finding answers.

 

 

he also has daily headaches and GI issues!

 

[ShaesMom]

Well...definitely sounds like my daughter then.

 

I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.

 

If you are interested in the Lab Panel #'s send me a PM.

[cynditk]

Well...definitely sounds like my daughter then.

 

I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.

 

If you are interested in the Lab Panel #'s send me a PM.

 

 

 

I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?

BTW, he regresses in a major way whenever we take him off the zithromax.

[cynditk]

Well...definitely sounds like my daughter then.

 

I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.

 

If you are interested in the Lab Panel #'s send me a PM.

 

 

 

I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?

BTW, he regresses in a major way whenever we take him off the zithromax.

 

Also, Shae's Mom, who is your immunologist? My son has IgG Subclass deficiency. We never tested for antibody deficiency because Dr.Gupta did not want to immunize to test.

[ShaesMom]

 

I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?

BTW, he regresses in a major way whenever we take him off the zithromax.

 

Also, Shae's Mom, who is your immunologist? My son has IgG Subclass deficiency. We never tested for antibody deficiency because Dr.Gupta did not want to immunize to test.

 

We are in the Midwest.

 

I don't have enough experience with Lyme to comment on abx.

 

Great job on getting the LLMD appt next week!