posted
My 16yo daughter is supposed to begin school in 4 weeks. She has been in treatment for only 5 months. She has severe cognitive/fatigue issues and unless things change rather quickly, I don't see how she'll be able to do school, even the online school she has enrolled in.
She is on a very good detox protocol, so I don't think that is the problem. She is eating well and on a candida protocol, including Diflucan. She sees a LLMD/Psychiatrist for psych/pain issues. She is on a sleep cocktail, so she is able to get 10 hours of sleep per night, finally!
She's tried different stimulants (rx and supps) and can't handle them. They just make her wired, but don't do anything to help with the cognitive issues.
She was only able to complete 1 online class all of last year, so is doing the 10th grade over again. Last year was so hard on her and the stress of tying to figure out how to do her schoolwork and freaking out about her future and how the heck she would ever graduate was just too much! I think that the stress of that really impacted her healing journey.
If she had bone cancer or HIV nobody would expect her to be in school, and would understand that she was too ill to be in school. The mindset would be totally different. The only people who 'get' how sick she is is her medical team and her parents. I don't care what other's think, but I am at a loss as to what to do. Pull her out of school completely? Keep pusing to find ways to increase her cognitive ability?
If we have her withdraw from school for the year, she will be almost 18 next fall and still a sophomore. I am at a loss as to what to do.
She has a 504 plan and the school has been amazing. They have tutors available via the computer or the phone. Her teachers have tailored assignments for her and reduced the amount of work she has to do. She has learing assisted software (speach recognition and recorded books)and still can't do it.
I put this under medical because I would really like to hear what other's have done to help them the brain fog and Lyme brain.
I know in the big scheme of things that she can always finish high school later, begin college at a community college and then transfer to a 4 year school when she's ready. But darn it! This is young woman who had Yale in her sights and used to be an A student. This disease has taken so much from her already, that it breaks my heart!
Ideas? Thoughts?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Hi Kellye, you know I have no answers, but wanted to say I'm keeping her in my prayers and hope you find a way to work this out. Is she feeling better in other ways?
Thinking of you and your family.
Penny
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
My daughter will be struggling again with school in a few weeks, too. She is supposed to be in 7th Grade but I am homeschooling her because of her medical issues. This will be her 4th year to be homeschooled.
She has a LL psychiatrist and last summer, he suggested Namenda for cognitive functioning. It is used in Alzheimer's patients. We haven't tried it yet, because we've been trying to address other issues, so I don't have any experience with it.
It might be worth asking your daughter's psychiatrist about it, though.
I have a LL therapist and she tells me about other kids who have missed years of school and gone on to college, even with scholarships based on GED scores.
We can only hope that this disease will change them in positive ways as well for all that they have missed.
Posts: 984 | From US | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I feel for you both and hope she gets better soon. Make sure she does not have co-infections. My bart was not obvious and it messed up my mind just as much as the lyme. I had no motivation either.
1000mg Acetyl L Carnitine is supposed to be excellent for the brain, memory and energy. I take it with 600 mg alpha lipoic acid which is a powerful antioxidant and detoxer. AL Carnitine is even given to people with dementia to help them think better.
Virgin Coconut oil is supposed to be very good for the brain.
B12 helps and is depleted by lyme.
Huperzine is an herb that can help with memory.
Two very good books are Buhner's and the Lyme Solution (can't remember the author).
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
So sorry about her struggles. I second the motion on the coconut oil. It always clears up my brain fog. I know you said she was on stimulants, but if it was ritalin instead of adderral I found a big difference. Adderral helped me quite a bit.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
a 504 is a good starting place but It will not provide the level of accomodation that a IEP , or individual educational plan. Your daughter will qualify as "other health impaired". This will provide access to more ways to modify the curriculum making it possible to complete courses even though she is not able to respond as others do. There have been posts which give detailed descriptions and suggestions for this situation, You can search for them. My son survived high school, the last two years of it were mostly spent on the couch. I read to him, typed for him, the tutors came and there were many modifications. But he graduated, to sick to attend the ceremony, There is life after high school. More important than the school work, remaining connected to friends. good luck
Posts: 28 | From ri | Registered: Oct 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I have gone through this with my own daughter...and have supported countless parents dealing with the same issues. There is hope. Do not be discouraged!
PM me and I may have some alternative ideas that seem right for you.
Remember, this is an individual health journey. A cookie cutter approach does not always work for lyme, co-infections along with clearing the toxic debris caused by the treatments, environment and pathogens. It is a hit or miss thing. But there is surely something that will work for your particular situation.
My daughter is now in her second year of college...and doing so much better than highschool. I did not think she would make it physically to college several years ago. She is not perfect...but is doing very well. Lyme and co-s are not troubling her ...remission or gone. NOw what remains is clearing her body of the debris...and the candida/yeast type issues from years of abx. The biggest issue is emotional.
I do highly recommend the allergie immune therapy for many teens...as the first component it addresses is dealing with the emotional component and the underlying subsconscious issues of "being sick and different". IT clears them quickly. Every teen I personally know on them, has noticed a positive emotional improvement!
Living with a "lyme label" internally does more harm than the actual pathogen! Being on any protocol for a young person is devistating emotionally...and dealing with those issues will lessen the internal stress, allowing the immune system to function so much better.
Learn that the body is not individual parts...it is one...and all organs work together and effect each other...especially the mind. When sleep and thinking is an issue,....it is always an indicator of a deep emotional issues that needs clearing that many times cannot even be recognized or expressed in the person. (not saying its only emotions...but they play a larger role than most are aware)
Allergie Immune helped my daughter clear these things pretty quickly. When the deep , mind things are released..disease treatments work effectively. There are layers to work on...it is not just physical.
Posts: 1009 | From NJ | Registered: Aug 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Wow, what an excellent thread!! Keep it coming, Ladies!!!
My brain fog is blocking any questions I might have about my daughter's brain fog.
I am worried about school starting again. She has been able to "keep up" and looks/acts/seems healthy.
Since she started treatment 5 months ago, I've seen her abilities decline, like concentration, reading, following directions. So although she doesn't express brain fog, I know it's there.
I just don't know if I should talk to her teachers, or what to say if I do. I am already a little bit of "the crazy lyme lady" there so I'm a bit wary.
Do I attempt to pave a path or just try to catch her if she starts to fall?
Wish there was an instruction book!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Have you tried Fish Oil (High DHA), Magnesium, CDP-Choline, and perhaps also a full spectrum vitamin E ?
I found these things to be the best for Brain Fog.
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Searching the archives can be helpful:
Cut and paste from a previous post of mine
I've been able to keep pretty good brain function. Some things to look at are:
excess ammonia - caused by spirochetes and causes brain fog
increased quinolinic acid - also caused by infection - causes brain fog - look at buhner book on things to use to fix it
acetylcholine - affected by lyme and can be severly affected - especially by die off
Search here for all these things. They've been discussed several times. To get you started:
excess ammonia to remove excess ammonia try l-ornithine or yukka
Lyme spirochetes make excess ammonia. It is a toxin. If your gut is not working properly or you have a genetic mutation that inhibits your ability to remove ammonia or for some reason your body can't keep up with the excess due to die off etc., you can end up with an excess which can affect brain function causing fogginess.
Something I wrote in another thread: You may want to look into quinolinic acid and ways to ameliorate it. Apparently some of the confusion/memory problems that are caused by lyme may be caused by the production quinolinic acid. Some things that Buhner (healing lyme book) claims help with that are: resversatrol melatonin copper/vit C selenium
acetylcholine http://www.townsendletter.com/FebMar2006/lyme0206.htm Dietary Supplements in Lyme Disease One of the known actions of the Lyme spirochete toxin is to diminish the release and availability of the neurotransmitter acetylcholine, a simple organic compound (see above for chemical structure). This substance is biosynthesized by the body as required in nerve activation and transmission.
Supplementation by the precursors of acetylcholine synthesis would be of value to Lyme patients since they have a deficiency of this substance. (See Listing 1.)
Listing 1: Dietary Supplements Increasing Acetylcholine Synthesis Improving Neurologic Function
I am not a doctor. Just relaying my research and experience.
Edited to add: When spirochetes die, they release heavy metals. Heavy metals can cause brain fog and lots of other symptoms so binding heavy metals while in treatment is important.
Some heavy metal binders activated charcoal, zeolite, bentonite clay
They must be taken away from foods, meds, suppelements
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I sympathize. My son had lyme and knock wood dormant now and I have it in the brain. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
We are going through the same struggles right now too. I have always homeschooled for various reasons. But even doing that, you still have to turn in grades and be accountable to your school that you are enrolled in.
This is my daughter's first year of high school, and she has been on treatment for four months now. She doesn't know if she's going to be able to do the work because of cognitive issues.
We are just going to take one day at a time. I can't imagine having to deal with a public school with this disease. I think it's just easier to homeschool. That's just my opinion though. I'm sure everybody is different. And also every state's rules are different. We live in a very friendly homeschooling state.
I think that she should do whatever amount of work that she is able to comprehend. If she has to go to school another year or two, it's better than still being sick.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I am overwhelmed right now with emotion! I can't express how much it helps to have this forumn to express my fears, feelings, anger and hope. Thank you everyone for your ideas, thoughts and prayers.
We all will get through this together. I think it is so important to share our ideas and experiences.
We went to the LL psychiatrist today and my daughter told her that she has been doing some ACT practice work and that she is actually retaining some of what she is reading. This is a huge improvement for a girl who couldn't remember her dogs name last winter!
I think that there are many of us parent's out there who struggle to know what the right path is and having each other to lean on is invaluable.
Thanks everyone! Healing thoughts your way.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm not a parent, but I had a lot of severe cognitive impairment when I was first on antibiotics.
I found that Methylcobalamin (a vitamin B12) seemed to help lift some of the fog. I also searched for online sites that offer mental exercises. The one I remember is a site called Luminisoty.
Unfortunately, that site charges a monthly fee, so my membership has elapsed. But they test in speed, memory, spatial understanding. I played online word games like Boggle.
I ranked in the very bottom percentile for most of these but just kept on trying and trying.
In time, with antibiotics, I did begin to clear. But it took me awhile.
My heart ALWAYS go out to the young people who are dealing with this. I was much older when I was diagnosed. Still a struggle but I can only imagine what it's like when you're young.
Good thoughts to you and your family.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
We have been going thru similar struggle with our daughter 15 years old. She got lyme 5 years ago and co infections Bart and Babs were detected 2 years ago. She is on wheel chair and started school last year after a gap of 4 years. She had CNS lyme with cognitive deficit, lack of concentration, mood swings etc.She was doing well for last 1 year but now since last 2 months again started presenting similar symptoms like 5 years ago - brain fog, mood swings, concentration loss, confused state of mind, sleep disorder .... any expereince or recommendation wud help. she was on Zithro and Mepron for last 2 years and now switched to Rifampin and Doxy 6 weeks ago ...her bart count is 1 : 256 whc was normal for last 1 year ...lyme at IGX was negative and so is Babesia after 12 months. she takes Keppra XR for brain a/w Fish Oil, B 12, L Carnitine.
Posts: 25 | From CT, USA | Registered: Jun 2010
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posted
Our doctor got really sad a few months ago, when she saw that my bright, energetic son with congenital lyme just got dim, fatigued and stressed with increased Lyme treatment.
This is the tough part of the process, in my opinion. We are filing a complaint against our son's school for NOT being wonderful. . . even though I understand how hard it is to "school" a kid who is rarely there.
So, this year, he is transferring to another school and we have already planned to slow things down. He will be taking a short load and graduating in 5 years rather than 4. Adding a bit more with each year of treatment.
I know someone who just graduated high school with an online school (very motivated, but really sick for years), she was able to catch up in the last year a whole lot. Went slow the others. I could connect you with her if you PM me.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Maybe this will help someone? Hope so.
I just emailed to my daughter's english teacher to tell her that the summer book reading and report my daughter had committed to wasn't going to happen.
I mentioned lyme and brain fog and wouldn't you know it, the teacher emailed back and said that she totally understood. She said her daughter, at the age of 12 had been one of the first diagnosed cases of lyme around here, back in 1998.
Her daughter had terrible fatigue, arthritis, brain fog, etc. for 2 years until diagnosis and treatment.
What a blessing!! A teacher that understands!!
I asked her then, how would she recommend I approach the school on behalf of my daughter?
She responded, "NO PROBLEM about the reading . . . that is just an optional assignment and is not important right now.
As for the rest of the school year . . . I will try to be aware of her condition as we progress.
If anything is too overwhelming, would you please let me know. I would be happy to give her extra time to complete an assign. if she needs it.
The only thing I ask you, is if you would write me a note or send me an email requesting more time (in other words, not your daughter).
I am asking this so that other students don't think they can just say to me, "Hey, can I have extra time, too?
This is what I would suggest if it were my daughter: In early Sept, I would request an after-school meeting of all of your daughter's teachers and the headmaster so that you could express her needs to everyone at once.
That way, everyone would hear the details directly from you and no information would be inadvertently lost in translation from one teacher to another.
I would have a handout for each teacher with my email and phone number in case there are any questions down the road.
I would also specifically request that teachers have some flexibility with their due dates and that they streamline Anna's assignments as much as possible.
(A letter or even a list of suggestions from the doctor might be helpful in stressing the extent of her debilitation to those who have not had personal experience with TBIs.)"
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Let's talk some more. We are into week 3 of school and my daughter hasn't done one assignment! I wrote to all of her teachers this week and heard back from a few.
We are in a unique situation. She has been in private school all of her life. When she got too sick last year, she withdrew. The private school is out of district and we have no experience with our local district, which is horrible by the way!
Last year she enrolled in online high school. She doesn't like it. Doesn't get enough stimulation and people time. I think that's part of the problem. There is a really good high school close to our house, but also out of district.
They have a great IB program if she were up to speed next year to start as a junior. She is short credits though. Our school district has a homebound program for students too sick to go to schoool, but they only have teachers come 2 hours per week.
I feel like just having her withdraw and go to school when she's ready. She's leaning that way too. But, she still wants to go to Yale! She figures she has a unique experience and that when she is well that they will accept her based on her GED and an outstanding essay! The other part of me feels like it's a copout.
I just don't know what to do!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
This is my fourth year to homeschool my daughter due to Lyme. She is in the 7th Grade now.
She also went to private school. I am too nervous about getting the public school involved in her schooling and everything I have heard makes me think they wouldn't provide much anyway. So I am coming up with her curriculum.
She isn't able to do much and I struggle with trying to get her to do more. Then I get a bad headache and see what it is like having to work when you don't feel well. On those days, I question if I am pushing her too hard.
This year, she is able to do a little more than she could before. Also, watching her try to do math, I see that she just can not remember the numbers long enough to write them down and struggles to keep her thought going long enough to do the calculations.
So I try very hard to remember she is doing the best that she can.
Last year, she was in such bad shape that I would have skipped the homeschooling if we could have. As it was, I was stuck with the feeling that we should have been doing more, but she really couldn't.
So I don't really think it is a copout, but I do understand your mixed feelings about it all.
Posts: 984 | From US | Registered: Dec 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
Acetylcholine is very much affected by lyme as I mentioned previously. Your children would likely be helped and some would probably see significant improvement by boosting acetylcholine.
Edited to add: be sure to check out any supplements with their lyme doctor, especially if they are on antidepressants or other prescriptions.
I caught my lyme early so it didn't totally debilitate me academically. I have a lot to be thankful for.
That being said, it's been terrible having to motivate myself to do school work at times.
The best things for getting by:
1. Jarrow Formulas Methyl B-12 5000 mcg (I have 2-3 of these sublingual a day...a total of over 240,000% DV) 2. Nuvigil in very small doses (10 mg every one or two days as needed, or more for assignments/fatigue) 3. Avoiding white flour 4. A good pro-biotic, believe it or not, seems to help with cognition
The nuvigil appears to have a neuro-protective effect in my brain that surpasses the amount of time its in my blood stream (in meaningful concentrations) by 2-3 days.
Treatment wise, treating babesia and following schardt protocol have been the biggest help..really helped me turn the corner from a less-functional to more functional chronic lymie. I used to barely be able to read or memorize. Now, I can read, just slower than I used to. Cat's claw also has a neuro-calming effect that is great initially, but I think one builds resistance to it.
Day at a time. Day at a time.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I just received your PM...I have a lecture, but pm me again with specific questions....here's a quick thought as I run out....
Add a binder to grab the debris or die off so you do not re-absorb the toxins you are eliminating with your protocol. LIke: chlorella (natural health food store,it is sea algea), or Colestromyme( script). Clears brain fog.
It is not all lyme causing the neuro symptoms. It is what you had before lyme that got you to this point most likely. Toxic body burden...too high...then lyme comes oir something else that sets off the problems like dominoes falling.
WE all get toxins inherited from birth...then added invironmental toxins, then added pathogens like lyme.
We cannot avoid it, but must understand how chronic illness happens. IT is not just lyme so to be successful, more than lyme must be treated...and possibly treateing the other issues first may be your best best, especially the gut.
although you must keep symptoms at bay with the lyme if you are feeling very ill....if it is just hte brain function...than I would first direct protocols to healing hte gut and clearing the die off and debris with binders like chlorella.
Detox along with any killing protocol is a must. Binders are exxential.
Also, please take a multi mineral..not multi vitamin. Make it a liquid. This way you will absorb it...as the gut and the brain are one. IF you cannot absorbk your brain cannot function. Any food or stomach issues effect your cognition and body function. This is important
The brain and "cns" needs its minerals. (mag/potasium and all_ They are robbed by lyme and robbed by malabsorption . All chronic ill people have mal- absorption at one point or another.
Teens and kids do very well on taking INtra min...the flavored variety tastes good, a capful a day...basically. They have a Dr. online who can guide a protocol for you. Minerals are detoxers...as they kick out toxins from your cells that took the place of the minerals...as your cells grab and absorb the liquid minerals rapidly. very important.
the probiotics help great...but there is more to work on the "heal the gut".
Get the Book: The Gaps Diet". IT is written for autistic children...but it applies to all chronic conditions...as this diet will get dramatic positive mental results for all on this.
It works for many mental issues as well.
I have been following patients on this.
Work on gut...then the brain will start to function better.
Hang in there...and make sure to send out the energy of love, forgiveness and gratitude in all areas of your life...the physical is greatly inpacted by the emotional state you are in and give others in the field around you.........this is vital to improvment. This is the greatest medicine...I'm not being philosiphical...this is science of health...our bodies are physical, and spirit and light. All areas need to be healthy and in balance for the physical to function p roperly. Parents can bring on bad health to their children with negetive evergy...so find a way to get beyond the bad thoughts...rejoice always, even in your trials. Find positives in each day. You can. Life is way more about school...look deep.
Hang in there. You are supported.
blessings to all.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I also homeschool. I have lyme as my son does too. He has add so with concerta he is able to focus. I believe he mostly has neuropathys. I have lots of brain fog & use pinella brain nerve clense. I have not inquired if childern can use it but does help me. www.nutramedix.comwww.myherbs.net we may end up going an extra year to graduate but so what.
Posts: 443 | From The North Star | Registered: Jan 2010
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