Those that treated for lyme along with PANDAS

[lmkmip67]

I won't go into the whole story, 9 IVIGs, 2.5 years of antibiotics and no improvement in PANDAS. We are sitting here waiting for an appointment with Dr. J in CT, but that isn't for another two months. WE just did a steroid burst through DR. B to try and calm things down again, but it didn't help one bit. Ian is on prozac and it does help the OCD a bit. But he still has some, and his tics are back basically full time now. He seems to only be dealing with a vocal tic for the most part now, but it will not go away with the steroid burst, or motrin this time. So while I am feeling sad and discouraged in some ways, I am still trying to remain hopeful about the appointment with Dr. J. Ian's Igenex test was suspect so that is the route we are taking. My question is for those that started treating PANDAS, but moved on to Lyme, were the symptoms the same? OCD, tics, ADHD type, mood issues, impulsiveness, etc? Or are there symptoms specific to lyme that are not like PANDAS? We have tested for other co-infections and can not find anything thing else that seems to be setting this off.

 

THanks,

 

Lisa

[LNN]

Yes, to me the symptoms were identical. OCD, tics, lability, anxiety, esp. separation anxiety, adhd...

It's why others were suggesting lyme to me but for a year, I dismissed it.

Now, with 20/20 hindsight, there were symptoms I blamed on Pandas that seem more due to lyme - hair-trigger anger, muscle pain and brain fog. But my son probably had lyme first, then Pandas when a few months after his tick bite, he got strep. So I always saw all symptoms thru a Pandas lens. To me, they all came so close together, there was no easy way to see a difference between the two.

 

What's more, there were a few symptoms that I blamed on Pans that had more to do with methylation/pyroluria. A few I blamed on Pans, like the reading/academic issues, that were in part caused by convergence insufficiency.

 

So it all got wrapped up in one big ball of string that we've spent years unraveling. Antibiotics, detox, integrative medicine, supplements, ERP therapy, vision therapy and time - have all played a role in getting him better. One single label didn't fit. One single treatment didn't get the whole job done. It was truly a patchwork quilt of labels and treatments that have put humpty dumpty back together again.

 

But to answer what I think is your question - yes, the things you're seeing could easily be due to lyme.

[lmkmip67]

THanks! I think you are right, it will be a few things that will end up helping Ian, too. But my current hope is to get the major things under control that bother him like the OCD and tics, etc. Then we can work on more of the other stuff like the hair-trigger anger etc. We deal with that, too. I know there is PANDAS in the mix because he got strep and developed tics right after. But there is more to the story, for sure.

[LNN]

While you're waiting for your appt, you might want to ask over on the lyme forum if there were labs that dr J ordered that you could get run in advance (perhaps ordered by Dr B or your local dr?). Things like your HLA-DR gene status (which must be run thru Labcorp) will tell you ahead of time whether you're likely to have a hard time with herxing/detox and/or with mold issues as part of the picture. Maybe there are other things he also looks for frequently that you could have with you for your first visit. Might make you feel like you were doing "something". I would also read up on detox ideas and various lyme treatments that compliment antibiotic therapy. As I understand it, Dr J doesn't provide much guidance in terms of detox, yet it can really help in the rough times. I found some good books for free on google books (some pages were omitted but I was able to get a lot of helpful ideas. Here's one: http://books.google.com/books/about/Insights_Into_Lyme_Disease_Treatment.html?id=ZFMRKZ2uoW4C

[lmkmip67]

Thanks so much, that is a great idea!

[landamom]

My dd has/ had Lyme. She had a CDC positive blood test last spring and we started treating her with abx. In august she was dx with PANS and has now seen several of the "experts". Just wanted to give you basic background on us so that you can understand where I am coming from ... My belief has been that there is no difference between "neuro" Lyme and PANS. Lyme is a bacteria and it can cause (trigger) an autoimmune reaction and inflammation in the brain just as strep can or mycoP or some viruses. I know this will not be a popular view, but ironically it is shared by Dr. jones who we saw just two weeks ago. In fact he knew a lot more about pandas/ pans then I expected and he wishes that the name would go away and be called something along the lines of infection triggered autoimmune encephalitis or something to that effect. Simply because it would remove the confusion with parents (and insurance companies). Lyme, just like strep or any other bacteria, has its own set of symptoms, which are mostly physical. So once a child is experiencing the neuro symptoms it becomes no different to PANS. You need to find the right meds to treat the bacteria but the autoimmune issue can still remain. That's where we are now. I just wanted to give you our perspective, because we've been there and are still there. I think Lyme testing is still important because more so then Lyme, you may have some stubborn coinfections which I understand can be tougher then BB to get rid of. BTW, Dr. J firmly believes you can IRRADICATE Lyme from children. And I tend to believe him as he has seen the worst of the worst from every country. The younger the better and obviously the sooner the diagnosis the quicker the cure. And just FYI, my husband has chronic Lyme and has had it for A few years. he only recently startedtreatment. It is a very different presentation in him as an adult then it was in my child. Best of luck to you!

[Allie]

I won't go into the whole story, 9 IVIGs, 2.5 years of antibiotics and no improvement in PANDAS. We are sitting here waiting for an appointment with Dr. J in CT, but that isn't for another two months. WE just did a steroid burst through DR. B to try and calm things down again, but it didn't help one bit. Ian is on prozac and it does help the OCD a bit. But he still has some, and his tics are back basically full time now. He seems to only be dealing with a vocal tic for the most part now, but it will not go away with the steroid burst, or motrin this time. So while I am feeling sad and discouraged in some ways, I am still trying to remain hopeful about the appointment with Dr. J. Ian's Igenex test was suspect so that is the route we are taking. My question is for those that started treating PANDAS, but moved on to Lyme, were the symptoms the same? OCD, tics, ADHD type, mood issues, impulsiveness, etc? Or are there symptoms specific to lyme that are not like PANDAS? We have tested for other co-infections and can not find anything thing else that seems to be setting this off.

 

THanks,

 

Lisa

[Allie]

Not to add more confusion and stress. But the steriods are a no no with lyme disease and co infections. It further drives the immune system down. Your DR who ordered it probably did not realize that with the lyme

disease now on the list of things to treat.

 

Some simple things to use, that are natural for OCD, tics, while you await your appt with DR J.

IP6 Inosine ( but I DO NOT KNOW if you can take it along with Prozac, you will need to ask someone).

Tryophan for sleep , depression, sadness - a little of 5 - HTP each day can help a lot ( once again the Prozac ? I doubt you can take the two together)

What other supportive supplements are you using? Anything vitamins? How is his VItamin D3 level?

Minerals , can help with tic's. But not sure if the Prozac could be adding to it.

 

HTH's

Allie

[cobbiemommy]

My son also has Lyme, which we originally thought was just PANDAs. We also see Dr. J and Dr. B. Dr. J says that steroids can be used in dire situations, when nothing else will calm down the inflammation and makes the child totally nonfunctional. We have had to do this twice and if nothing else, it gives you a glimpse of how good life can be when your child is feeling good.

 

We finally tested CDC positive in December after several years of only being inconclusive on tests. One symptom that you will see with Lyme that you don't with PANDAs is fatigue. My son has so much fatigue and joint pain. We were prescribed a mito cocktail (By yet another dr) that has really helped with the fatigue. He is able to do a little more activity. Yeah!!!!

 

Things may get worse before better, but the better is so worth the wait.

[tpotter]

Yes. But, actually even more. Rages are not a part of the PANDAS picture, but they are part of mycoplasma pneumonia, bartonella and babesia. By younger son had these as some of his primary symptoms...even before the OCD and tics and other symptoms started. All 3 can be a part of tick borne diseases. Turns out I was the one that was + for mycoP (IgM), and it was Dr. B. testing the whole family for strep and mycoP that figured that one out (both boys and DH were seriously high for IgG for mycoP.) BTW...I was extremely symptomatic, but pulmonologists and immunologists did not even consider testing for it, and just kept treating my unremitting asthma with steroids (which makes lyme worse...btw).

 

Now, all that being said, yes, even the NIMH says that Lyme is possible with PANS. And, that's why they came out with PANS. PANDAS and PITANDS are part of PANS.

 

Dr. J. is wonderful from everything I've heard, but if you want a possibly quicker appointment with another LLMD, I can PM you the name of one in MD. You might get in quicker. Totally up to you.

[Pandasphilly]

Yes. But, actually even more. Rages are not a part of the PANDAS picture, but they are part of mycoplasma pneumonia, bartonella and babesia. By younger son had these as some of his primary symptoms...even before the OCD and tics and other symptoms started. All 3 can be a part of tick borne diseases. Turns out I was the one that was + for mycoP (IgM), and it was Dr. B. testing the whole family for strep and mycoP that figured that one out (both boys and DH were seriously high for IgG for mycoP.) BTW...I was extremely symptomatic, but pulmonologists and immunologists did not even consider testing for it, and just kept treating my unremitting asthma with steroids (which makes lyme worse...btw).

 

Now, all that being said, yes, even the NIMH says that Lyme is possible with PANS. And, that's why they came out with PANS. PANDAS and PITANDS are part of PANS.

 

Dr. J. is wonderful from everything I've heard, but if you want a possibly quicker appointment with another LLMD, I can PM you the name of one in MD. You might get in quicker. Totally up to you.

Tpotter can you pm the name to me as well. I live in the Philadelphia area. Cannot take another day of rage.

[landamom]

I think you can also get in quicker to the Jamsek clinic in DC. He is an LLMD that also works with pandas kids. My understanding is that he doesn't take on any patients himself, it is the PAs that you see. But that may mean you get in quicker? good luck.

[nicklemama]

Interesting conversation. DS was diagnosed PANS 2.5 yrs ago. We saw rage, OCD, inflexible thinking, hoarding, severe separation anxiety, sleep issues, motoriic hyperactivity, and eventually tics. Happened after a flumist. Tested in PANDAS range on Cunningham. Did very well on abx but never got back to more than 70%. Had IVIG and did very well. Nineteen months later caught mycoP pneumonia and went into exacerbation. IVIG #2 in Nov 2012 and recovering. Found local doc to help us finally. She felt there was more to it and did a ton of tests. Lo and behold ehrlichia and anaplasma turned up positive. Lyme neg. Babesia neg too, but she feels he has babesia. Started ehrlichia treatment today. We will treat for babesia once ehrlichia treatment is done. I hope and pray this takes care of the rages. I've reached my limit and my coping abilities are waning. He had a mini meltdown at school on Fri for the very first time. Interestingly, he had a steroid burst in Aug to treat the chorea like movements he developed over the summer and he did really well and they went away. He still continues to confound the rules.

 

Forgot to add, in the beginning he had a lot of fatigue. He could not go on hikes, could not snow ski more than an hr or two at a time and could no longer keep up in soccer. This was a huge change for him. Also, the bottoms of his feet hurt frequently and I would rub them. After starting abx for PANS, these symptoms disappeared.

Edited March 18, 2013 by nicklemama

[Hopeny]

One thought I have had is that those that have elevated Mycoplasma titers should consider an evaluation by an LLMD. It seems to go hand and hand with Lyme. (The book Lab 257 has an interetsing theory about why this is) For us, the obsessions and compulsions seem related to PANDAS. The joint pain, lethargy, low self confidence, rage, neuropathy, eye issues, upset issues etc seem to be from Lyme & Co. We got the Lyme dx first and PANDAS second, I resisted the PANDAS diagnosis for some time. The PANDAS symptoms resolved rather rapidly. Lyme has been more difficult. I think I read somewhere on this board, paraphrasing for PANDAS you put on your boxing gloves, the Lyme fight is slow and long. Maybe one is a battle and the other a war? I will say, so thankfully, my daughter is much, much, much better. Nickelmama I cna't recall if I told you already but consider trying Burbur for rages, it really seemed to help DD.

[nicklemama]

Hopeny, I have some ordered. DS's doc recommended it in case he has a herx. She gave me a herx handout of things to do. We gave him the doxy today. How do you give it for rage?