aidansmom

Hi, you and I spoke on the phone back in March - we are also from Northeast Ohio as you probably remember from our conversation. I would like others on this forum to continue to offer recommendations as far as doctors go as I feel that traveling is in your best interest and I would like you to hear a variety of choices. But I feel like not many people or doctors in NE Ohio know anything about Chronic LYme. When I get a chance I will send you resources that I know in NE Ohio that will help you support the LLMD that you travel to. I try to pm or email you soon. Elizabeth

This is strong evidence that you may be dealing with LD. Since Lyme disease testing is not definitive I believe that the sequence of the bite with rash, flu like symptoms and the tics starting after that are much stronger evidence then lab results might be. Based on that alone I would go see a LLMD. Getting tested for it may give you more data but you may want to see what tests the LLMD suggests as far as testing is concerned.

Justine, Do you take it just one time per day? Thanks for asking. Aidan is doing better now and no more seizure like episodes since Sat. morning. Did you see the video I posted on my herxing thread? Now it is more the behavioral stuff - defiant, in other people's space, lining up toys - that kind of thing

I have access to 2 PBS stations in Northeat Ohio (Cleveland/Akron/Canton0 and one is showing it PBS WVIZ which is channel 25 on direct TV for us is showing it June 6 at 3:00pm I can not find it on the other PBS stations channel - WEAO Western Reserve PBS

LLMD definitely thinks what happened to Aidan was a herx reaction and is not at all surprised by it since Flagyl is killing Lyme in cyst form. She does want us to follow up with neurologist to see if there are meds to help support this like raising his seizure med dose, etc. I also feel I need to try to add some more detox strategies. I debated whether to do this but I thought I would share video one of the episodes Thai Aidan had on Sat. (My first youtube upload ever!)

I think I need to add Bentonite Clay for detox. especially after our hecx this weekend. I keep hearing about this but have never pursued it. I will try to research more but could some of you that do use it give me the quick start guide? 1. Are there certain brands that are better than others? 2. How much to give? How to give? (Aidan is 48 lbs) 3. I am assuming that it needs to be given away from meds/supplements or it will remove them or interfere with them. How much time in between? any quick info would be helpful.

I had a similar experience. I went to the PANDAS doctor first and then found out we were dealing with Lyme (IGenex IGG positive). Our LLMD also thinks we are also dealing with Bartonella even though testing came out negative - based on his symptoms. At first the PANDAS doctor (same one as yours I believe) prescribed an antibiotic based on the IGenex outcome but for me personally I felt that dealing with both a LLMD and a PANDAS doctor was going to be too confusing. Many people keep the PANDAS doctor in the loop also and that is OK if that is what you feel is best. (Perhaps someone who is doing this can step in and give their point of view.) From my research and when I put everything together I thought that Lyme/bartonella was the overriding issue that is messing my son up and therefore I needed to let the LLMD be the primary person who treats. Lyme and Bartonella are very tricky to treat especially when they most likely have had it for a long time - likely since birth for Aidan and it sounds similar for your child. When I have read your posts for a while I had often thought that Lyme and Bartonella was a possibility for you even before you got the test results. I guess I saw a lot of Aidan in your description of your child. I know how hard it is. You are doing such a great job. Just to note Aidan had a CamK of 159 and also has had high ASO and antidnase and history of strep throat with behavioral changes. I know that your child had a high cam K but did she ever test positive for strep or have high ASO or antidnase? Our LLMD did acknowledged the PANDAS diagnosis and the Cam K number so perhaps if you feel the PANDAS part is really important than you can go to a LLMD who is versed in it also.

I believe it can be a symptom of Lyme and also Bartonella.

Yes Aidan had also hit his head when he was about 20 months old and wouldn't stop crying and vomited so I know that hitting his head was a possible cause for the vomiting. I suppose it could be the cause for the sleepiness and the other motor issues but I think he was having symptoms before he had hit his head (eyes dilated, napped Friday upon arriving home from school - seemed unsteady upon awakening). Neither of us saw how he injured his knee which percipitated his collapse. I wonder if uncoordination was there first and caused him to stumble and hit his knee hard enough to have blood dripping. Here is a timeline to the best of our recollection in case anyone familiar with timing of herxing vs drug reaction can help sort out (Sorry some of this is a repeat): Of course I will get in touch with LLMD on Tues to see what they say. Friday a dose of Flagyl at 10:20 am nap at 4:30-5:30 (unusual), unsteady upon awakening a little "off" the rest of the night 2nd dose of Flagyl 8:30 PM Sat 8:00 am awakes = seems fine, eats a lot of breakfast around 9:00 hurt his knee, blood and band aid cause upset and panic, we think we have dealt with it and we start to go on with our business a couple of minutes later falls on back. head might have hit tile (heard a loud boom did not see), for around 10 seconds head rolling back and forth, eyes open but doesn't seem aware, funny noises (breathing?) - suddenly snaps out of it seems OK for a little bit around 9:45 = he grabs wrist like he feels a sensation, leans on us to keep balance, ends up on the floor and can not control limbs to stand up much less walk lasts several minutes, at least 3 minutes and maybe for 5 or even more minutes, when he did start walking around he did so for a few minutes with his Dad he was very unsteady like he was drunk. After a few minutes he sat down cried a lot, then he dozed in and out around noon = he vomited, then he walked around a bit, coordination is fine at this time seems OK 12:15 went to sleep and slept until around 6:00, seemed more normal after that, steady gate, he did continue to experience a bit of reflux/burping but no more vomiting Sunday had a pretty good day

I looked up the side effects of Flagyl and it says: "The most serious adverse reactions reported in patients treated with Flagyl (metronidazole) have been convulsive seizures, encephalopathy, aseptic meningitis, optic and peripheral neuropathy, the latter characterized mainly by numbness or paresthesia of an extremity. Since persistent peripheral neuropathy has been reported in some patients receiving prolonged administration of Flagyl (metronidazole) , patients should be specifically warned about these reactions and should be told to stop the drug and report immediately to their physicians if any neurologic symptoms occur" also: "Central Nervous System: Encephalopathy, aseptic meningitis, convulsive seizures, optic neuropathy, peripheral neuropathy, dizziness, vertigo, incoordination, ataxia, confusion, dysarthria, irritability, depression, weakness, and insomnia." This is pretty scary, so how do I tell if this is herxing or a side effect of the med? One reason that I thougt these things were herxing is that they have happened before he took Flagyl: 1. When he fell down and was struggling to breath and seemed seizure like for a few seconds happened once before last summer. Interesting enough both happened after he was upset that he was bleeding. 2. The episode in which he could not even gain enough motor to stand up is similar to episodes he has had in the past which were one of his first symptoms we noticed when he was 1.5 years old which has been controlled by meds. Yesterday's epeisode was much more prolonged and he had grebbed his wrist right before it occured like he had some sensation there. Yesterday he also slept for many hours in the afternoon after all this all occured. Here's one more thought - could other people that reported these side effect in the past actually have been herxing too? rather than it being a reaction to the med?

He is 48 pounds and he is to take 250 mg of Flagyl 2x day every other Friday only. He is also on: augmentin 600 mg 2x day monday through Friday (Doc keeps him on due to PANDAS diagnosis and history of high strep titers) azith 250 mg 1 x day Mond, Wed and Fri only - previous to this week he was on it Mon - through Fri. This change corresponds to the addition of azith I have seen discussion about pulsing antibiotics on this forum and I guess by our dosing schedule out LLMD believes in that. Although I thought the new schedule was strange I didn't ask the reason for it at our last appointment but will definitely next time I get the chance. I think LLMD expected a possible extreme reaction and that is one reason we are only doing Flagyl every other Friday, We can add vomiting to our reaction today but I hope it is not because he hit his head on the floor when he passed out. He also has been dozing in and out. I think we don't see the behavioral stuff because he just feels so bad physically. This is the first time that I have ever noticed his eyes were dilated in his history. So, if this is herxing it must mean that we are on the right track with the Lyme trail unless it is a reaction to the Flagyl. Sometimes I just feel like I having a hard time believing that it is Lyme we are dealing with whiteout a doubt.

Aidan started on Flagyl yesterday. His is to take only every other Friday Today his eyes seemed dilated. He came downstairs and he said "I'M bleeding" (pretty good talking for him). He had hurt his knee and was bleeding and he was upset and panicky. Afew minutes later we heard his head hit the tile. He had fell to the floor and his breathing sounded funny and loud and his head moved back and forth - only for a few seconds. About an hour later he started losing motor control and couldn't get up to stand or even think about walking. He used to do this and was diagnosed with a movement disorder and when we put him on trileptal that controlled these episodes. But previous episodes usually lasted only a minute - this seems to be going on longer. He is talking pretty well. Any advice - I did not expect it to be this bad. Do we just ride it out? Are there meds that might help? I also expected more behavioral.= symptoms rather than physical.

Hello, I just picked up the results for Aidan's siblings. We suspect Aidan of having congenital Lyme (positive IGenex IGG) and bartonella (negative by IGenex. Different things have been nagging me about his 2 siblings. I asked their ped to order tests for them but I think I know more than her about interpreting them. I need to decide what to do next, if anything. DD12's results IGM negative by Igenex and CDC 41 IND IGG Negative by Igenex and CDC 34 IND 39 IND 41 ++ 58 + DD12 does not have a lot of current symptoms but a year ago she had a lot of anxiety, thought her heart was racing, chest tightness, pain in heel, hip (could be explained by growth), stomach aches. Still has some pain in hip/knee occasionally but she is a distance runner and an Irish dancer and does both intensely DS10' results IGG positive by IGenex, negative by CDC 31 + 41 + 83-93 IND IGM negative 41 ++ DS 10 has had some symptoms in the last couple of months. He had stomach aches, chest pain and had a a positive rapid strep in March. Stomach aches have persisted every few days may have died down some lately. some headaches. He also had ongoing symptoms similar to this 2 years ago. Recently he has also had ankle, shin and knee pain - can be explained by growth and participating in sports. He has little issues = nothing as bad as I see on the board with things like having anxiety over things like sleeping in his own bed and bugs First question - Ds 10 is IGG positive is due mostly to band 31 which I believe is supposed to be very specific for Lyme. I have heard people in the past talk about the band 31 confirmation test. Can someone explain what this is for and if band 31 is very specific - why do this test? Just trying to figure out what to do next. I feel we are already spending a lot of time and money on Aidan's treatment - not sure whether to pursue for the others. Also waiting for results for myself and dh Any input is welcome! Elizabeth

My son lost a tooth last night and we have been having an increase behavioral symptoms for the last week or two. I remember reading on the PANDAS board that some had a flare of symptoms when losing a tooth and I think I have also seen this on the Lyme board. I don't know if there is a connection for us or it is just a coincidence. Could you answer Yes or no if you have noticed this? if Yes: Was it in the process of losing the teeth or after the teeth fell out that symptoms flared? Are they behavioral symptoms or physical symptoms? If there is a correlation, can anyone venture a guess why? Our diagnosis of PANDAS over a year ago came at the time he was losing his first teeth, There were definitely symptoms long before that but we had a flare in illness and behavior that coincided with losing the teeth. Now it seems more like behavioral flare (except a recent rash) but I am not sure there is a connection.

Susan, Azith ounds really similar to our current dosage, Aidan is about 48 pounds and has been on 250 mg azith once a day. He is also on 1200 mg of Augmentin (600 mg 2x a day) but only Mon. through Fri. Before we delved into Lyme treatment he was on augmentin only for PANDAS and it got switched to azith only, which brought on herxing and/or extreme nasal drainage and ear infection. ER doc prescribed amox for that and it did not clear up infection so a couple of days later we switched from amox to augmentin which did seem to help it clear up - so augmentin was much more effective for us than amox, at least at that point. We just visited with our LLMD and we are changing up the antibiotics next week. They (Doctor and Physician's assistant) want to keep him on Augmentin since he has had the diagnosis of PANDAS and high strep titers. (They were actually in the normal range for the first time in a year last time measured) Now, they want us to give the azith on Mon, Weds and Fri every other week. Also to add Flagyl every other Friday only (same week as azith) - sounds similar to what you are doing with Flagyl I thought this schedule seemed weird and I am full of questions about it but I just couldn't formulate them at the end of the doctor's appointment. I do think some threads that appeared on this forum recently (the ones about people struggling with the Lyme treatment and setbacks and if they would go this route again) helped answer my questions partially. I think that LLMD thinks that Aidan is fragile and his issues with Beauvoir so extreme that they don't want to push too hard and get herxing that is too intense. I am sure our LLMD knows what they are doing but I want to understand it more. Also we think Bartonella and I am not sure which meds deal with that. So many questions! and so much to learn!! Elizabeth

We tried a stimulant 2 years ago before Lyme/Pandas diagnosis - not a good result. LLMD wants meds to help with behavioral/impulse issues but NOT stimulant. We are trying tenex now (time release form is intuniv - we don't do this form since Aidan does not swallow pills and we crush them) We started giving one half of a 1 mg tablet at bedtime about 3 or 4 weeks ago and then 1 or 2 weeks ago we added 1/4 tablet in the morning. I think he may be calmer but the jury is still out At the end of this week Aidan's teacher will fill out a form that will evaluate whether he has had improvement. Interestingly we have had a terrible couple of days behaviorwise this week along with a suspected rash as I posted on another thread. Because of the rash, I think it was Lyme and/or Bartonella giving us a flare in behavior so I am wondering how that will skew out opinion of the trial period of the tenex. Does that mean that the tenex isn't working? Or will we determine that the baseline is better. I will try to post when we conclude on this and as we give it more time after this flare. We work with a ped nuerologist closely who is prescribing this. She does understand PANDAS and is open to the Lyme treatments for Aidan.

Our LLMD has pushed the magnesium with Aidan - one of the supplements they insist he take. We do MagnaCalm (Is that what you use Wendy?.) LLMD wanted multiple scoops a day (1-2 scoops twice a day)- I have had a hard time being consistent as I need to find a opportune time to put it in food or drink that he will actually eat or drink. I think more than 2 scoops a day may cause bowel problems for Aidan but normally he tends toward constipation anyway. Right now I am trying to make sure he gets a minimum of 1 scoop a day. We did do blood tests that said his magnesium level was OK but LLMD said something about the fact that even though the blood tests didn't show a deficiency that didn't mean that it was making its way to joints/ligaments, etc, (hopefully I am remembering this accurately)

Word from LLMDs office said they thought it was "Suspicious of Bartonella". Like I mentioned Aidan also had a bad day at school behaviorally - one of the worst all year - running out of the classroom, grabbing at other students,, throwing himself down and he had been relatively calm. Have to wonder if rash and behavior are connected. If they are, why now when we had not done a antibiotics change? Perhaps my husband being out of town (in China!) is a factor (a stressor for me and the kids).

Perhaps this works to link to the photo. If not I will probably give up. There are a total of 4 separate marks on his lower back. He is laying on his right side - you can see his natural waist line near the middle of the upper half of the picture . My finger is on the waistband of his shorts (pulled down a bit), There is a scratch with it's deepest-looking part near my finger. two red circles which are not raised at all and then the one on the upper right is the most interesting to me - especially if you are able to look closely at it - this is slightly raised Emailed LLMD office to see what they say. INteresting he had a terrible day behaviorwise at school today - one of the worst in a long time

Trying to get the picture so it can be viewed but I just can't figure out how to do it!

Aidan came home with marks on his back yesterday. First impression would make me think that a couple of them are scrapes or abrasions but I am not sure that makes sense so I think they may be rashes. He is not verbal enough to tell me if he had hurt himself at school. Neither the teacher nor I remember any incident that would have given him abrasions like this. I am wondering if they are rashes and if so what is causing them. He had similar marks in the fold of his elbow the day before that I thought may have been scrapes but again wondered if they were rashes instead - has faded today some but one or two more pronounced that looked more like abrasions are still visible. Also, one scratch/cut like mark on his back that day. I am hoping this link will be a photo of the marks. (not sure of the best way to post photos) He is lying on his right side. Mark near my finger is at/below waistline and looks scratch like. The others are more circular. The one to the right looks very interesting if you look closely - I think this one was slightly raised. No changes in antibitics for a couple of months (but geting ready to add Flagyl) http://mail.aol.com/33668-111/aol-6/en-us/mail/get-attachment.aspx?uid=26862020&folder=Inbox&partId=1

Can you share the brand your using? Yes, where can we get one of these I would like to try it also.

I thought this study was interesting http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf they compare particular bands in patients with Lyme disease to the normal population I especially liked figure 3 which shows how the different bands compared in the 2 groups in this study. 87% of those with Lyme had band 41 + and 43% of the normal population did (if you look at Table 1 you will see that they also compared to samples of those with syphilis and 75% of those were + 41). But band 39 was + for Lyme: 81%, normal: 1% and syphilis: 10.7 I have not thoroughly read this study and wondered if it has been discussed here or if anyone has any additional insights into it Aidan was IGM 23-25 IND 39 IND 41 + IGG 30 + 41 ++ 58 + 83-93 +

I would have to agree. I would find a way to test for Lyme and/or go see a LLMD. If Dr. K won't do it find someone who will. We started out as PANDAS but we got a positive Lyme test so we are pursuing that. Lyme can cause similar symptoms to PANDAS. Or, Lyme and PANDAS can go hand in hand since they both can be a part of a dysfunctional immune state.

I am having my family tested for Lyme as soon as I get the test kits from IGenex (as I have discussed in a previous post). Aidan's LLMD suspects possible bartonella although his IGenex results were neg. for it. (but IGenex IGG positive on Western Blot) I have started to wonder if I should test the siblings and parents for Bartnonella also. 1. Is Igenex the best lab to teat for this? Or is there a lab that would be more easily covered by insurance that would be just as good? 2. What is the best test to order for this? 3. How often do bartonella tests have false negatives? 4. should I start with Western blot and can they run Bart. later? As a side note - Aidan's brother keeps having stomach aches/nausea every few days and is fine in between. He had a stomach virus on March 21st that didn't go away completely. ON the 24th he tested positive for strep. IF I remember correctly he did not have stomach aches during his 10 days of amox. for the strep but they started back up a day or 2 or 3 after he stopped amox. Strep tests negative taken on April 6th. He also has heel and ankle pain but so do a lot of boys on the track team and he is growing quite a bit so that could be explained away. MichaelTampa - I just remembered your previous advice about trying ART. I have some questions for you regarding this. Perhaps I will PM you later when I have more time.