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    Old 02-05-2006, 12:54 AM   #1
    Mo_in_Wisc
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    Cognitive Effects in 14 Yr Old Son

    New here - this will be long. Thanks for being here!

    Quick history:

    2 sons with Lyme in last 4 yrs. Older, now 16, had single EM rash two weeks after returning from scout camp in Lyme endemic area in Aug 2002. Treated 3 weeks with amoxicillin and no further effects. Younger, now 14, had know embedded deer tick bite at same scout camp, also Aug 2002. His dad removed the tick from his face. No EM rash but 10 days after bite had sudden severe illness. 105 degree temp with chills, severe leg pain and weakness, severe headache, vomiting. Carried him into ER. ELISA was positive but Western Blot negative (only 10 days after exposure). Treated with 3 weeks amoxicillin. Ok until early July 2004. One week after coming home from same scout camp had headache, sore throat, extreme dizziness, and fatigue. Strep negative but treated as if strep with amoxicillin. Two weeks later still dizzy and extreme fatigue, what he described as face rushes, headache, dizziness, vision blackouts when going from laying down to standing. Also irritable/irrational. Tested for Lyme and Mono. Mono was positive and Lyme tests were cancelled. One month after onset had EM rash over entire body. ELISA positive and Western Blot positive. Treated for 3 wks with amoxicillin. Still very fatigued in mid August and did 2nd round of amoxicillin. Could not tolerate doxycycline. October still very fatigue and did 3rd round.

    Ongoing physical symptoms are: mild to moderate fatigue, occassional migrane, 6+ episodes of brief (10-15 minutes) facial numbness, one episode of scalp numbness. Occassional blacking out when going from laying down to standing, occasional night sweats. Since fall of 2004 significant drop in performance at school. Near failing in multiple classes. Prev A/B student. Now unable to focus in class, not completing work, not remembering to turn in completed work. He had previous problems with disorganization and staying on task but this is much exacerbated since Lyme. Pediatrician currently doing ADHD assessment. Had joint conference with his teachers, school psych, principle, counselor, us, and our son last week. One teacher was very understanding and wanting to help, another told him he is openly defiant and said he was manipulating and controlling all of us. (This teacher was aware of our concerns with possible Lyme effects and current ADHD assessment). Principle and school psych suggested off campus alternate school. No way! The only thing keeping him going at school is connections with his friends. Our son was near tears and very angry. It felt like a firing line.

    Need some help here. First, we are in western Wisconsin and looking for a LLMD, preferably a pediatric neuro or neuro-psych with experience in cognitive effects of Lyme in adolescents. We are within driving distance to Mayo Clinic in Rochester MN or Minneapolis/St Paul area as well as Madison or Marshfield Wisconsin. We need to know what cognitive tests to ask for and also if we should request SPECT scan. We also need to know what blood work should be done to determine if there is ongoing infection and effective ways to advocate for him if the tests are negative. Next, if there are parents who have initiated an IEP or 504 plan for their child because of cognitive Lyme effects, we need to know what modifications at school have worked.

    Finally, if this isn't enough, I was diagnosed 3 yrs ago with Sjogren's Syndrome after unexplained swelling in my left knee with positive Rheumatoid Factor and ANA tests. Other Sjogren's antibodies (SSA and SSB) are neg. ELISA was neg and no Western Blot ever done. I have ongoing fatigue, joint pain and stiffness, along with dry eyes, cold sensitivity, unexplained hair loss, heart palpitations, brain fog (forgot how to fill out a check one day), and frequent misuse of words. No history of tick bite or EM rash. Still would like to rule out Lyme but with negative ELISA they won't order Western Blot.

    Thanks in advance for any and all help.

     
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    Old 02-05-2006, 05:36 AM   #2
    ciconner
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    Re: Cognitive Effects in 14 Yr Old Son

    Hello and welcome MO,

    You need to have the Igenex test done.

    I really feel for you and your son. It's very frustrating. Even when you do test positive for lyme, as I found out, you still get an attitude. Yesterday I was giving a dr. my history and said I was being treated for lyme and the sarcasm began. I noted a tone of disrespect when asked, "And who is this specialist?" The one I'm seeing treats pretty cautiously and does bloodwork to see how well you tolerate meds. Still the dr. yesterday was in disbelief of the length of time I was taking antibiotics.

    I'm kind of going through what you are with my sons. One of them is being treated for lyme and is doing very well academically in school. He is getting an EMG to make sure the lyme hasn't started affecting his nervous system. I'm hoping it is just restless leg syndrome, otherwise he has to do IV again. The reason for the test is that the pediatric neurologist said that if it is starting to affect his nervous system, he will suffer academically, as you see is happening to your son.

    I have removed ticks from my other son and he's had two Western Blots, which were negative, but the test I need to do is the Igenex. My son's (who has lyme) and my Western blots were both negative at least 5 times after treatment and then we did the Igenex, which was positive for us both and my son also had a co-infection, bartonella (cat scratch fever).

    It is an expensive test, but as anyone here will tell you, it will be the best money you ever spend.

    My son who has not tested positive for lyme is having trouble with his reading and has woken up in the middle of the night crying with ankle and knee pain. I find it hard to notice lyme symptoms in children because they don't really complain. His reading is very choppy. It's not that he can't read and I know what's going on because I do it too. His comprehension is poor. I also tend to read without comprehending, I enjoy reading, but sometimes have to read something several times after I realize I wasn't comprehending. I interpret letters differently or entire words differently quite often. When I was first being treated from lyme, entire sentences would fade and I wouldn't even see them. From what I learned, there are different types of dyslexia and I think this is what is going on with us. My son may not have lyme, so I could be wrong in his case. But they are supposed to do the joint conference at school also. He was also having crying jags at school and at home. In my experience the symptoms come and go and/or change.

    Lyme is very common in my area, so most teachers and adminstraters are very understanding. I have heard stories of behavioral changes in kids who were diagnosed with lyme because of perceptive teachers acknowledging that a child wasn't being themselves.

    Hope you are able to find out what is going on, so you can get the proper treatment. If he is positive, the next step will be to make sure he is being treated properly and for co-infections.

     
    Old 02-05-2006, 05:44 AM   #3
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    Re: Cognitive Effects in 14 Yr Old Son

    Mo_in_wisc:

    First of all I am so sorry for all you have had to go through with your boys. My heart goes out to you. You all need to be tested -including yourself as your symptoms sound like lyme. Call Igenex lab in California and order the test kits. They have a web site but we can not give out information like that on these boards. They specialize in tick borne diseases. You have to pay for these tests yourself but it is well worth it. I would have your sons tested for lyme as well as the co-infections Babesia, Bartonella and Erlichiosis-but make sure especially with the Erlichiosis that they run the one that is found in the Midwest. I am in the Twin Cities and am still trying to find a Lyme Literate Medical Doctor (llmd). Do not go to Mayo or Marshfield clinic. For lyme you will be sent to the Infectious Disease Department, and they will diagnose you with everything but lyme. I have a name in Duluth Kevin Stephan but I have not seen him yet and I am keeping my fingers crossed that he will by lyme literate. Every other name I get in this area has turned out not to be a lyme literate Dr. Also, you could try Karen Vrchota in Winona. Lyme is supposed to be a clinical diagnosis based on symptoms. Good luck to all of you. You are in our thoughts and prayers. This board is a great place to come for information in support.

    Frango

     
    Old 02-05-2006, 06:10 AM   #4
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    Re: Cognitive Effects in 14 Yr Old Son

    Hi Mo_in_Wisc,

    I am also sorry to hear about your family, it is frustrating.

    Besides getting tested at IgeneX Labs located in Palo Alto, CA, yes, your symptoms sound like Lyme to me too, you should know that many doctors do not understand Lyme and treat it with outdated protocols.

    No test is completely reliable and a knowledgeable doctor will consider your entire history and not rely solely on test results.

    Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected.

    That's why it is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    Please do not go to the Mayo Clinic, they have the worst reputation as far as Lyme Disease.

    The best Lyme Literate Medical Doctor that I know of that is closest to you is Dr. Charles Crist who is in Missouri. Many members on this site are patients of Dr. Crist as he is an excellent doctor and comes highly recommended.

    Many members travel across states to see such a fine doctor.

    Dr. Crist may not even require you to take the IgeneX tests, he may diagnose your family's symptoms based on the history you gave us.

    Another excellent doctor for children is Dr. Jones but he is in Connecticut. People do fly from all over the world to see Dr. Jones as he specializes in children with Lyme Disease. I hear he has a 6 month waiting list but there is another doctor who works with him named Dr. Marra who is also excellent and you could probably get an app't right away.

    Lyme is curable if treated by the right doctor who understands this disease.

    I welcome you to this wonderful site as there is so much information and support here.

    Hang in there,
    Denise

    Last edited by deejavu; 02-05-2006 at 06:16 AM.

     
    Old 02-05-2006, 08:27 AM   #5
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    Re: Cognitive Effects in 14 Yr Old Son

    Dear Mo_In_Wisc,

    Welcome to the boards. I am so sorry you feel the need to be here but glad you were able to find us. You will find a lot of very knowledgeable people here who will have a lot of answers for you that most doctors won't. You will also get compassion as we know what you are going thru. This is something you will find is lacking in the people who have never experienced this dreaded disease. Doctors and friends.

    So far everybody has given you great advice especially the testing needing to be done at Igenex. Some doctors will tell you they come up with too many positives but I can tell you my test came up negative according to CDC standards but symptomatically I am being treated since the test isn't 100%. I had 4 positives and 1 indeterminate and 5 positives are required. We all joke about how we would like to fill a room with doctors and ticks just to change a few minds. Then again maybe some of us aren't joking.

    Your son may not be able to shake the lyme because he may be dealing with a co-infection. Babesia comes to mind because you talked about night sweats and that is a definite symptom of this disease. There are many doctors who feel that the co-infections must be eradicated before the lyme can be. I don't want to scare you but babesia is a tough one and I know because I am dealing with it too as are many other people on here. But it can be beat as can the lyme so don't lose faith.

    I know of at least 2 people on here who have said in the past that the Mayo Clinic is not the place for lyme diagnosis. So hard to believe but true. My own daughter had a friend go there from the Dallas area and they ran every test under the sun and told him it was all in his head and sent him home. His mother is a psychiatrist. I think she would have known. He was a fighter pilot in the Air Force and could not keep from losing his equilibrium and he became forgetful so he had to leave the service.

    I am one of the people on here who goes to Dr. Crist in Missouri and there are 2 other people from your area who travel to Springfield, Mo. to see him also. Way to far for many of us to have to travel but a must. LLMDs are few and far between. I was diagnosed for years with MS but knew it wasn't because my symptoms from the start were 24/7 and never changed until they doused me with massive doses of steroids to "help". It didn't and it has been a downhill slide ever since. Plus I was 52 when this started, kind of old for first time MS symptoms.

    I feel I am now in very capable hands and that I can see a light at the end of the tunnel. I started seeing Dr. Crist last October and will see him about every 4 months or so but he is more than willing to work with your own doctor for insurance purposes plus the travel required. LLMD's are hard to come by and most doctors don't want to learn about this disease so they shun the doctors who do. Unfortunately the CDC promotes this attitude because of their stance on the disease. One minute they tell you that you are not counted as having lyme if you don't have the correct number of bands but then they tell you the test is flawed so to diagnose symptomatically.

    It won't be too long before this disease overtakes AIDS because it is not from drugs or indiscriminate sex but from having a pet or going for a walk in the woods. Therefore it affects everybody who is bitten, young or old. I have read that there are probably anywhere from 10 - 100 times the cases that are actually reported. Maybe more. I think there could be one huge lawsuit if everybody got together and sued for the way we have all been treated but it will never happen. We are all just putting our energy into getting better instead of getting back.

    Unfortunately if doctors thought to test for lyme and took us seriously we would probably be healed without as much trouble. It is the waiting and the frustration for a doctor to "think lyme" that gets us into trouble and makes it harder to treat the longer the bacteria is in our systems. It took over 4 years for me which is not uncommon. I live in Dallas and of course here they for sure don't think lyme although it has been found in 49 states. Two months before my symptoms I had been hiking in Maine. I did tell the doctors this. No bite or rash that I recall but did have to treat a sinus infection when I got home from vacation. As it turns out a lot of people on here started out with a sinus infection too.

    I am appalled at the way your son was treated at his conference. No wonder he was angry. I have to tell you about the starting quarterback for Florida State University. Last summer he was found walking around delusional and saying he was God. Guess what he has lyme. Before the season even started they said he would not play last season and was being treated by Dr. Chandra Swami in Pa. They basically said they expected him to return this coming fall. I read a very small article in the sports section the other day that he will not return this fall as he is trying to gain his health back. So one year after discovering the lyme they expect this young man to still be fighting this disease. Maybe you should try to find this info on the web and print it out so your son's school can see just how bad this is. By the way the boy's father is one of the coaches so you know they would have held the spot for him if they thought he could have returned. And this started a year ago. Personally I wish they had grabbed this story by the horns and put it on the front page.

    I wish you nothing but the best in your journey and be prepared to feel worse before you feel better because this bacteria will fight as hard as you are. Instead of feeling great from the antibiotics you will at times (about every 4 weeks) maybe experience a herx when the bacteria dies and travels through your body and knocks you down for a few days. Some people even feel like this all the time. Not a pleasant prospect but believe me the alternative is much worse. After 4 years of non-treatment and a wrong diagnosis I can barely walk and hope that will change now that I am seeing Dr. Crist. Some people's immune system can handle this but other's can't so you must do what you can to heal yourself. Please have yourself tested too because you will only get sicker as time goes on. Your boys need you to be healthy too. In the beginning I was pretty much functioning at 90% and now I would say I am lucky to be at 10%. I think my downfall was a combination of the steroids they gave me plus it was a very stressful time in my house due to eprsonal stuff going on. Stress will make the lyme go crazy.

    Keep us posted on what you do and believe me when I say that your family is in our prayers.

    Maureen

    PS I have gotten something of a reputation on here for being long winded but I do try to cover all bases. Nobody seems to complain.

    Last edited by Betterdaysforme; 02-05-2006 at 08:30 AM.

     
    Old 02-05-2006, 09:23 AM   #6
    Mo_in_Wisc
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    Re: Cognitive Effects in 14 Yr Old Son

    Thank you all for the very helpful information. I saw there is another Maureen here so I'll be known to all of you as Mo - a nickname my cousins gifted me with years ago.

    I'm not sure if the Western Blots my son had were IgG or IgM based. I will request copies of the lab results from his records. I do know that both times (July 2004 and Oct 2004) the results were positive for CDC guidelines. I am interested in the new antigen test (Reverse Western Blot) for him. Has anyone here had that and if so at what stage of the disease? I will ask his pediatrician specifically about this test. Has anyone done this on their own through a kit or is this alway ordered by doc? Also, has anyone gone through cognitive testing? If so which tests were admistered?

    I just want you to know I appreciate your insights, especially with finding a LLMD. Our local clinic and pediatrician are Mayo affiliated so I'm quite discouraged to hear they aren't recommended for Lyme. That is surprising but very helpful information.

    Maureen, I also appreciate the comment on stress - we've had an extremely stressful few months. In addition to school issues, our older son's marching band had a tragic bus/semi accident in October at which my husband and I were first on the scene. Then our son totaled our car when he went off the road after falling asleep behind the wheel (just 2 weeks after the bus accident - he was exhausted after funeral for his teacher who was killed) - thankfully with airbag and seatbelt he was not hurt - he was cited so we've had to deal with court as well. Then my husband was struck by lightning in our driveway - miraculously he was o.k. and that was followed my dad being diagnosed with prostate cancer. So some days it feels like I have a giant stress ball wedged in my throat! Hard to swallow! My fatigue level has been horrible. I keep saying I need a warm sandy beach somewhere.

    I'll post again after Monday's appointment. I am concerned if he is diagnosed with ADHD and it is really Lyme is that they will want him on Ritalin. I'm not sure what to do if that is recommended. It is a lot to sort out.

     
    Old 02-05-2006, 10:49 AM   #7
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    Re: Cognitive Effects in 14 Yr Old Son

    To Mo_in_Wisc:

    I am sorry that you were involved in the Bus crash. I know all the students loved the band teacher at your school. Also, I am glad that your son was okay after his accident. I hope everyone is doing better now. My husband has to go to C. F. for a meeting next month-he is an environmental consultant-something about a gravel pit and drinking water-but that's all I know.

    Anyways, I know you mentioned Cognitive testing. The Dr whose name I gave you in Duluth is and I.D. guy, but I know he is a member of a Lyme advocacy group that I had mentioned on here before but the moderator took it out. I am really hoping he will be lyme literate, but like I said I hate to pass on names when I don't know for sure. There is a place near the U of M called Frazier School that is very good for ADHD and Autism. I am afraid that If this is lyme for me (although I have all the symptoms for lyme my test at Igenex was equivocal with 3 positives and 3 indeterminates and I know most LLMD's will consider an indeterminate positive) then I have had this since I was a child. My oldest son who is only 7 has really been struggling this year. He always had a fantastic memory, and that is gone. He is reversing numbers, having a hard time reading, suffers from chronic sinus infections, and chronic stomach aches, is having a hard time staying awake in class and a hard time concentrating. This is a child who qualified last year for the gifted program at school. He also had been prone to emotional tantrums and outbursts lately. Our pediatrician wants him evaluated at Frazier. I wanted him tested for Lyme but our ped wouldn't even entertain the idea. We made an appointment in January and their earliest opening was in May. You may want to contact them for more information. I know they are highly recommended.

    Best of luck to you all

    Frango

    Last edited by Smyle; 02-05-2006 at 10:50 AM.

     
    Old 02-05-2006, 12:53 PM   #8
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    Re: Cognitive Effects in 14 Yr Old Son

    Dear MIW,

    We tend to shorten names around here. Until we all started signing our names I was dubbed BDFM.

    When I was a cheerleader in high school one year the kids had Bubbles put on my megaphone because I was so bubbly. My mother who was very strict and didn't even allow me to date didn't appreciate that so the next year they put Moe.

    I think you are wise to seek another test. I don't know if the Stricker panel everybody on here keeps talking about would help you or not. From what I am reading it tells how bad or if there is an active infection. Maybe somebody on here who has had it done can explain it better.

    I wonder if your body and immune system was handling this better than your son's and when all those stressful things happened you got hit between the eyes. You have to find out. If your doctor won't draw blood you can check around and see if a clinic will and then order the kit from Igenex. I am glad you are keeping on top of this. Igenex recommends it be done early in the week so it doesn't sit over the weekend.

    Frango, Do you remember the eye test I told everybody about that Dr. Crist did on me? It was very simple and Ronnie was sitting to my side and said that I answered the reverse to what it was every time. It was lines on angles and I was reading them backwards probably because of the neuro lyme. I wonder if this is what your son is going thru. I didn't realize I was wrong but apparently this was a big flag for Dr. Crist.

    Maureen

     
    Old 02-05-2006, 03:21 PM   #9
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    Re: Cognitive Effects in 14 Yr Old Son

    Hi Maureen:

    I tried to look it up to see if there was a version on line and couln't find one. I know Dr. J mentions that there is in his book. Have you ever seen it online?

    Frango

     
    Old 02-05-2006, 06:52 PM   #10
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    Re: Cognitive Effects in 14 Yr Old Son

    Frango,

    Dr. J hopes to get the FACT test on line (the one Maureen talked about) but it isn't up and running yet.


    Mo,

    You got lots of wonderful advice about Lyme so I'm not going to address that. But one other thing jumped out at me when you were talking about your son - my immediate thought was he needs to have a SPECT scan done. Then you mentioned it in the next sentence.

    Even with Lyme, the SPECT scan (if you have it done by someone who knows what they are doing) can give so much info about the damage the ammonia can do to the brain (which can be controlled and often healed with medicine). and I am an anti-medicine gal mostly. Am using Dr. Jernigan's protocol to beat Lyme, am not using abx. But, I had the SPECT scan done because I still had to many symtoms, even though the Lyme is so much better. Ahhh, damage from Lyme. Dr. Amen has a great book called Change your Brain, change YOur Life. It is easy to read and Dr. Amen is an incredibly caring Dr. which comes thru in his writing.

    I know you have a lot on your plate right now, maybe this is just something to tuck away until you can look at it.

    Sorry life has been so hard.

    Jeanne

     
    Old 02-06-2006, 04:05 AM   #11
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    Re: Cognitive Effects in 14 Yr Old Son

    First sorry your having health problems really I am with you and your sons.

    Second I would like to say that if doctors would get their heads out of the dirt, they would see by under treating your family, they are tne main cause of why things are so hard today for your son.

    His drop in grades I understand, not his fault, Lyme cripples your abilty to be smart, makes you unable to think correctly. No focus and always at a loss.

    Please find a LLMD as quick as you can, and you can let the doctors that treated them for three weeks know, they need to go back to Lyme School and learn what the heck they are doing.

    Doctors are the number one reason why people with Lyme get Sicker! This is the truth of what I've found out to date about this desease.

    Good luck.

     
    Old 02-06-2006, 05:24 AM   #12
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    Re: Cognitive Effects in 14 Yr Old Son

    Hi Ekim,

    Sorry, once again I tend to disagree. Just as there are so many people who are uneducated about this disease, there as just as many doctors who are "uneducated".

    As I stated in other posts to you, it is our job to make our voices heard to Congress so the CDC will change their guidelines as well as more research for more accurate testing, etc. It's like the game of domino's, once the first domino falls, the rest will fall into place.

    I do not blame these uneducated doctors, in fact, I don't blame anyone, not even the ticks themselves because they are only doing what nature gave them. Remember, it all starts with the white footed mouse who are the hosts for these bacterias.

    Education is the best form of prevention, treatment, etc.

    Denise

     
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