keeptrying

I am beginning down the Lyme journey for my daughter. I have spoken with some here that have been life savers but want to put this out to others that may be in my shoes. My dd's main symptoms are tics (have anxiety and mild ocd too), most of the doctors we have seen have said that tics are not a symptom of Lyme disease. Dr. K was very helpful when I was looking for information on pandas and while deciding on ivig but he also said tics are not a symptom and never have been. Help! Is there anyone out there experiencing these symptoms with no joint pains or other "typical" symptoms of TBI? I am scared. We thought pandas and ivig has not helped. Now we think maybe babesia.. So confused to say the least. Any help would be appreciated.

I posted on the PANDAS forum too - has anyone done a live blood analysis? It is a finger prick then the blood is examined under a special microscope and the results are discussed right there in the office. Our doctor is suggesting this because of the IND of babesia found in our Igenex test. He uses this test when other blood tests are inconclusive. The tests can also show, bacteria, Candida, parasites, and a bunch of other things that I am not remembering at the moment. We are still waiting and praying that ivig will bring some positive results. Our doctor is still concerned about the "possible" babesia infection. We have asked for more testing before treating. Our doctor feels it would be a good idea to do an herbal challenge with A-BAB to see what happens. I am afraid of this. My dd is a big time ticcer and I am not sure what will happen if we give her the herbs. I AGONIZE over this daily. Any help would be appreciated! Thanks.

Has anyone done this or heard of this? It is my understanding that it is a prick on the finger and an special microscope examines your blood right there in the office. It can see things like bacterial, parasitic, Candida infection etc. I am also posting this on the Lyme forum because it can help to reveal co-infection like Babesia etc. Our doctor has used this many times in cases when regular blood work was not clear. Any info? Thanks!

it would be great to know too how long it took your friend to see symptoms improve after the removal of the nightshades. Did symptoms stop completely? Thanks for finding out more info for us.

hi, does anyone have any information on blood smear testing specifically for Babesia? Igenex has shown IND for Babesia and negative for everything else. Our doc would like to treat the babesia anyway. We have already done ivig for pandas but suspect coinfection could be a problem now. We were told of a blood smear test that may be helpful. Any advice? Thanks, - new to this board.

Hi. I am new to this side of the forum! I have been a frequent viewer of the PANDAS forum and never thought I needed to be on the Lyme side, but here we are. I am sure these topics have been discussed many many times, but it would be really wonderful if I could get some feedback on my dd's Igenex results. Just some quick past history: dd10 has had mainly tics with minor OCD for almost 6 yrs now. We have tried everything. We came upon the possibility of PANDAS last yr and finally did ivig 10 wks ago. We did do igenex testing last yr and I was told by 2 doctors that my dd did not have Lyme and to move on. A respected doctor also told me that neurological symptoms have never been from lyme...I am reading that may not be the case with everyone. The doc we are with now would like to treat for babesia. The following are our results: IgM Western Blot Neg but had band 31 IND and Band 58 ++. IgG Western Blot Neg but had band 31 and 39 IND and band 41 ++ B Ducani IFA was IGM 1:40 titer which said may or may not indicate infection. The IGG was negative What does this mean? Any help would be appreciated. Concerned about starting Lyme treatment when we do not know if ivig has helped yet. Thanks!

We have done this. I brought my daughter to a pediatric GI doctor a couple of years ago when I was trying to put the pieces together. He ran many tests and that was one of them. It is a 4 hour test done in a hospital. The only hard part was not eating before. The test came back normal which was good I guess. I am all for trying to rule it all out. Good luck if you do it.

Appreciate your help. Funny, but on the first day of infusion, my dd started ticcing more during the treatment. I was worried and they noticed too and said they would monitor and if it continued to escalate they would slow it down or stop. Thankfully, it was not bad and we continued on. The second day was uneventful but the days following have been a roller coaster. Did not realize that Dr. K views getting worse or better as a the same. Jill - how is your daughter doing now?

It is 1 1/2 weeks post ivig for us. The first few days after the ivig, my dd's tics were very low, BUT they have been slowly increasing ever since. Things are different in that, tics that were lower are now higher and those that were higher are now lower. The vocal tics are still there too. I know that Dr. K talks about certain weeks/months when the healing crisis is to be expected. Can anyone help me to understand when those are? I am trying to listen to all the great advice that is being given to me but it would help a ton to understand this process better - IF that is even possible. My dd has had tics for almost 6 yrs now, Dr. K (through phone consults agreed it was pandas and strongly suggested ivig), the medical professionals we are with have agreed as well, so we went for it. I am praying we made the right decision. I am scared to death. I would be appreciative of any help. Thanks!

This is just one of many articles that I have read that states that steroids can worsen tic behavior. This is the main reason why I have continued to put off the steroid burst.I have been told that it would only last a short time if it did cause a problem but it is that "short" time that I am so worried about...This is really hard because we read how some kids get such relief after the steroids and how it can help to diagnose PANDAS but as a mom who will have to deal with the aftermath, I just do not know yet.

can you tell why you say to stay away from laughing gas? my dd is being sent to a dentist for work to be done using laughing gas because of her anxiety over the procedure. they have suggested sedation too.

For those of you using the NAC - is there a noticeable change? Is it helping? How long until you saw results if any? Also, anyone using it for tics?

I have read a lot about the potential for NAC (N-acetylcesteine) to help control OCD and Trich but is there anyone that has had success with or used it for TICS? I just got some information from Dr. Leckman that a study is starting on NAC for TS. I understand it is safe with very little side effects. Any info??

I just spoke with Dr. Leckman at Yale University about NAC. He said it has had much success with OCD Spectrum Disorders. I can not answer your question but wanted to offer that if you need more information regarding this, maybe you could contact him. He is very kind and willing to help. I am curious about its effectiveness with tic control.

Thanks for your post. I am not sure if I am seeing anything changing yet. She had it on Saturday night so this is our 4th day. Her tics are fluctuating so much right now it is hard to tell. I do notice some red cheeks too which is usually a sign that something is bothering her.

My dd had a beverage with red dye #40 it it - not realizing - I poured her a glass.... I noticed her tics were pretty bad soon after and all evening. How long does this junk stay in your system? I have read days but wonder if that is true? Would tics stay increased the entire time while it clears from the body? Any suggestions? thanks

This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5? Thanks for this. I appreciate the advice so much. Regarding the ibuprofen - I have given it to her once or twice and never saw a reduction in her tics. I did only give one dose though - wondering if I should have done more than one dose before stopping? Hope this is not a dumb question, but is Motrin/Ibuprofen different in anyway? I read some use one or the other - they both reduce inflammation so it should not make a difference correct?

This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5?

I am at a standstill and need to move forward. All the tests that my dd9 has taken still put her in a "gray area". Nothing stands out really. Lyme, myco, immune complexes, comprehensive blood, stool, saliva, you name it. The only thing we have is a camK score of 164 which points to Pandas (or does it really?). Abx did nothing. The next logical step is steroid burst. My fears and concerns are: 1. If TS and not PANDAS will a 5 day course exacerbate tics or cause more harm than good? 2. If no response from burst does that mean no response to IVIG? Recently heard that that is not necessarily true - anyone with experience like that? I have had experienced doctors tell me that the burst should not cause a problem. I have had many here on this board say they had good experience with steroids. BUT I AM TERRIFIED to give them to her. My problem I get it. I trust those that have said to do it, I just get so consumed with fear/worry/what if's that I can not seem to move forward. Any advice?

we had some supplements suggested to us from NeuroScience as well, would you mind sharing what your ds is using?

I really can not give you the info you are asking for but I did want to tell you that our doctor uses NeuroScience and feels they are very good. I hope that helps knowing that the results might actually be accurate... I am curious about the extremely elevated dopamine - did they give you a reference range? If you feel comfortable, you can PM me because I am trying to learn about dopamine and how it might be playing into the picture for my dd. I hope you get them translated soon and that they help.

ooppss double post. My dd9 has mostly tics. She does have some anxiety and possibly some ocd like behaviors when younger not now though. I have reached out before to tic only parents before so I understand where you are coming from. I am not sure I have much to say that will help you because I am in the same boat. We just got our cam k test back that shows my dd is in the above ave pandas range. We are waiting on some other tests too that will hopefully show us something. I have to tel you that I was and still am always looking for "something to help" in the interim. I have not found it. We have been dealing with this for 5 yrs now. We have tried so many different things and nothing has helped..yet. I have made some nice contacts and friends on this forum and they have helped me to understand it is one day at a time. Get a good doc and listen to him/her. Test for everything. I do believe if there was anything that has helped us it is changing our diet. We keep out diet clean, organic, limit sugar, avoid "bad stuff", lean proteins... My dd has never done well on supplements so I stay away from those or maybe I just have not found the right combo of them yet. We do some probiotics but usually like to get it from food source instead. We have tried antibiotics with no results. We are faced with the decision to start steroids, but I am nervous about that. I understand that there is inflammation but I have heard stories of tics worsening from them. I have had a lot of support and the general thought is to just do it - so I think I will but pray like mad. I am not sure if this story helps at all. I just want you to know that I am happy to share our experience along the way if you would like. MY advise is to stay the course, dont give up, even when the tics get bad (as it is for us right now) just know there is something that can be done, we just need to find it. Good Luck.

that is such great news. can you share what supplements you are using and how you came to find that you needed to eliminate these items from the diet. I have tested my daughter but they were only skin patch tests so I am not sure how reliable they are. I did try gluten free for a long while but it did not seem to help. I am always interested in hearing what has worked for others. Thanks so much.

Thanks for the fast reply. Our doc never mentioned the need for abx after. My dd was on 2 wks zithro and 2 weeks omnicef about 2 weeks ago but not anymore. Did you have active infection at the time? I was told that 5 days would not cause probs even if there was a hidden underlying infection. What was your experience? Thanks so much.