Hello, I am in need of help my daughter Kayley who has had lyme since she was 11, Gave birth to a baby on August 29th, well since then all hell has broke loose, she has been hospitalized for what they say was ecoli then changed and said it was a staff infection, on the day she comes home she has what I call a Grand Mal Seizure,fell to the floor flopped everywhere, bit her tongue, well ever since she has been having these episodes where her body shakes and jerks everywhere, it is pitaful to watch, we have an appt with a LL Neurologist, but not for a month, we have seen some of the best in the world, but just don't know what we can do to help the situation, Thank God that the baby's father is here to help with the baby, anyways does anyone know of anything to help stop these jerk sensations they are pretty bad, I even video them, I just gave her xanax,flexiral and magnesium to see if this would help. PLEASE ANYONE OUT THERE WITH ANY ANSWER PLEASE RESPOND!!!!
Posted by Keebler (Member # 12673) on :
- I can't read your post, just the headline. Hope detail here helps:
Topic: Best way to control limbic seizures/overactivity?
Many LINKS -
Posted by Keebler (Member # 12673) on :
- Off the top of my head: ----------------------------------
monitor & manage blood glucose
consume good fats frequently, starting with first thing in the morning and the last thing at night.
Protein and complex carbs also important. As Porphyria can trigger seizures, it's important to not be on a low carb diet if porphyria might be a factor. See the "Liver Support" link below for more detail on this.
SUGAR, itself, can save a life if porphyria is involved. IV Glucose may be required.
avoid ALL fluorescent lights
avoid all scented products & cleaning chemicals. Go scent-free.
avoid even a trace of gluten
avoid all food additives, dyes, etc.
Treat infections assertively
Support liver & kidneys.
Avoid any drugs that are contraindicated with porphyria.
If vegan or vegetarian, TAURINE must be supplemented. Conjugated linoleic acids (CLA) must also be supplemented.
Avoid acetaminophen (as it blocks the liver's capacity to make and manage glutathione)
For emergencies: IV Glutathione &/or IV Magnesium with Taurine can help.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by undiagnosed22 (Member # 28152) on :
I am so sorry to hear that your daughter is going through this. Was she treated during pregnancy? Is she being treated right now?
Posted by glm1111 (Member # 16556) on :
quote:Originally posted by MrsScampi:
Breaking Up For Easier Reading
Hello, I am in need of help my daughter Kayley who has had lyme since she was 11, Gave birth to a baby on August 29th, well since then all hell has broke loose,
she has been hospitalized for what they say was ecoli then changed and said it was a staff infection, on the day she comes home she has what I call a Grand Mal Seizure,fell to the floor flopped everywhere, bit her tongue,
well ever since she has been having these episodes where her body shakes and jerks everywhere, it is pitaful to watch, we have an appt with a LL Neurologist, but not for a month,
we have seen some of the best in the world, but just don't know what we can do to help the situation, Thank God that the baby's father is here to help with the baby, anyways does anyone know of anything to help stop these jerk sensations they are pretty bad,
I even video them, I just gave her xanax,flexiral and magnesium to see if this would help.
PLEASE ANYONE OUT THERE WITH ANY ANSWER PLEASE RESPOND!!!!
Posted by glm1111 (Member # 16556) on :
Mrs Scampi,
I am sorry your daughter is so sick. Can't remember her exact symptoms that you posted in the past, but I remember I always suspected she has untreated G.I. parasites and posted to you about that.
This aspect is ignored by many people here for some reason, but if left untreated can have serious consequences. The mainstream docs will never pick this up.
Parasites/worms can be a MAJOR co-infection of Lyme and is often left untreated and undiagnosed even by the best LLMDs. My suggestion would be to make an appointment with Dr. K. ASAP!
If anyone can dx this aspect, he can. He treats ALL of his patients FIRST for parasites and SECOND for Lyme and co. That's what I would do if it were my child.
Gael
Posted by MrsScampi (Member # 11702) on :
Undiagnosed,
Yes she was treated all during her pregnancy and did amazingly well, the infant whose name is Bentley Joesph was tested, and was negetive, Thank God.
After her emgergency C-Section, she had to have a blood transfusion, she stayed in the hospital for 7 days.
She came home and seem to be doing great, then she became like delusional so I took her to the ER (Bad Place they laugh at Lyme)and the Dr told us she had a UTI and Hospitalized her, I didn't understand, then the ID doctor said she had EColi then it changed to Staph.
When she was in the hospital they were giving her IV Magnesium, which I didn't understand.
The day after she came home she had what I call a Gran Mal seizure fell to the floor bit her tongue called the ambulance, took her back to the ER, they gave her ativan and sent her on her way, Every night since she has had these episodes where her body twitches uncontrollable and she has her arms up against her chest tightly, it goes on for hours, she looks like Mandy in the video Under my skin (If that is what it is called)
I have called her LLMD and her Neurologist, and no one is getting back to me, I am completely devesated and worried sick, wondering if she will die.
If anyone out there has any answers please respond.
Thank You
Posted by Keebler (Member # 12673) on :
- That it happens at the same time each night, hormones might be suspect. Or by that time, she's just so tired that the seizure threshold is lower.
Seems clear that she is dealing with infection and she deserves a clearer dx as to if staph or E.Coli.
If E.Coli, that can cause kidney damage
Glad to hear she got IV magnesium in hospital. Did she have Preeclampsia / Toxemia? If so, she may still have toxicity issues.
IV Magnesium is used to treat Preeclampsia / Toxemia. It's also the best treatment to calm seizures, IMO. And it helps the liver in so many ways.
Peter Gillham's natural calm powder (magnesium & calcium mix), in water, is the best thing that works for me. And TAURINE
But magnesium can be hard on kidneys if too much all at the same time, must be spread out.
Did she get a steroid shot into her spine recently? If so, she needs to contact her doctor immediately and trace the batch.
If not, there are still so many reasons for this and hope she finds relief soon. -
Posted by Carol in PA (Member # 5338) on :
What medications is she taking now?
Which supplements is she taking.
What's her diet like, any allergies or cravings.
Which kind of magnesium is she taking? Look at the list of ingredients to see.
Although there are a number of things that may cause seizure activity, the two simplest support measures are magnesium and fish oil.
Looking online for info to back this up, I found quotes like this: "From the day she started the fish oil capsules her seizures stopped." "We tried omega 3 with our son and found it seemed to reduce seizures."
Low magnesium causes many symptoms, including depression, anxiety, panic attacks, headache, migraine, muscle twitches and spasms, seizures.
Foods high in magnesium include Almonds, almond butter, Beans, kidney beans, bean soup, bean burritoes, rice and beans, Chocolate
When I ate a couple ounces of almonds every day for two months, I lost my craving for chocolate! I also noticed that I felt better when I ate beans...this was before I knew about magnesium and Lyme.
The liver uses magnesium and omega 3's in fish oil to make glutathione. Your liver uses glutathione to detoxify poisons, including the nerve toxins left behind by dead Lyme bacteria.
It's best to use a pharmaceutical quality fish oil so that you won't get mercury. Eating oily fish is good, but it has mercury.