Razzle
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Can someone describe the difference between a simple seizure (one that the person does not lose consciousness) and large muscle tremors (e.g., trunk + arms)?
I'm having a heck of a time with something going on and the sensations I'm feeling and the muscle tremors with violent jerking shakes and I don't know whether I'm just having severe tremors or something more serious.
Its been going on all afternoon today and I'm more nauseated and feel a strange sensation in the back of my head, down my neck and into my back - a tensing, or spasming of the spinal cord or something next to it.
Then the jerking and shaking starts. It lasts anywhere from a few seconds to minutes, then stops. But then a few seconds to minutes later, it starts up again with the sensation in the back of the head/neck and then the jerking and shaking.
I don't know what's going on. I had something similar a few yrs. ago but when I went to the ER, the doctor blew me off and didn't believe I was shaking uncontrollably - he thought I could control it, therefore was "faking." I wasn't, but that's beside the point.
The symptom went away a few days later and I didn't think anything else of it. But now it's back and much much more severe than before.
The mild shaking stops when I put Copaiba essential oil on my back, but this time the oil isn't helping.
Got a little bit of relief from a blend of oils called Brain Power, but the sensations are returning (half an hour after putting on the Brain Power blend).
My hands are also really shaky and I can't do fine motor control tasks. Trying to get this posted before I can't type anymore...
I don't know what's going on so any thoughts or inputs are welcome.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- I would NOT do any oil with the word "power" in it, even topically. Likely too stimulating.
Do not do any sage oil, either. Sage oil can CAUSE seizures. So can some others. Nothing stimulating.
I think ALL essential oils are just too strong, actually.
I'm no stranger to a wide array of seizures, or being literally told to leave the ER for "she tried to throw herself off the table!" accusation. More than once, sadly. Once, after hours of what you describe today. Blood sugar then was 60. A clue.
While your situation and mine may be totally different and I do think you should have a good doctor to ask about this, I know the reality for those with lyme and complex cases.
Not sure if memory serves but are you on TPN? If so, my first thoughts go to nutrient depletion, even with liquid food, it's very hard to get the density of nutrients that will last . . . it's all simple foods, so to speak.
MAGNESIUM. That is really #1 but thought of it at the end. Could be low, as well as other minerals.
B-6, too.
1. check your blood glucose level - you may need some sugar, straight up. Back it up with honey, oil, protein.
2. get some good oils into you. Now. FISH OIL, COCONUT OIL
3. Protein. Getting enough? about 60 grams a day? Also, getting enough carbohydrates? This is no time for a low carb diet.
4. Sea Salt, heat, hydration
5. Been around any fluorescent lights? Avoid
6. Chemical / scent exposures
7. Adrenal stress of any kind can trigger these kinds of seizures.
And, yes, they certainly sound like seizures. It's a spectrum and not all seizures are epilepsy. Most neurologists, even though who were there when I had big ones, just walked over me and told me to get out of their office.
My usually triggered by sudden sharp sounds -- and I do have some inner / middle ear bone "holes" in the circular canals so that's the "straw" that triggers it.
What you describe is also very common with lyme. I want to tell you to not be too concerned as this is just part of the deal and it can get better.
Due to lyme, et.al. but also the factors I've mentioned -- and maybe more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- If you are generally gluten free and got some gluten, that could trigger this, too. Sure has for me. Many times - until I stopped trusting any friend to ever remember what they put into a recipe for a Pot Luck dish. -
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Keebler
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- Soft Ice pack to back of head. ARNICA homeopathic if you have that, sublingually. Arnica ointment to back of neck, any sprained places.
Stay lying down. The head must be horizontal right now (if you have a friend to come help, please call them so you can stay down to recover). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Refer back to this as I study the ESSENTIAL OILS more.
Good to see they are both Young Living brand but, still, I've used some of those before and most are just far too strong for tender brains. I could not even keep them in the house until a friend could take them from me after they arrived one day.
the CEDAR in the Brain Power could be a trigger.
the Lavender, also in it, would sure trigger seizures for me. Has many times. As it turns out, it's on the no-no list for those with seizures:
posted
I would look to adrenal issues and possibly the magnesium deficiency. I used to get the shakes and have not had them since beginning ReMag about 18 months ago. My body is finally getting the magnesium it had been screaming for. (I supplemented magnesium for years prior but could not get enough.)
I sure hope you can figure this one out!
Have you looked into myoclonus?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
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Keebler,
Thanks for your prompt reply - it is much appreciated.
The oil blend is the ONLY thing that has calmed this down. Here are the ingredients:
Yes, I'm on TPN, infused 16 hrs. a day. There is plenty of protein and carbohydrate (dextrose) in the mix. Blood sugar is difficult to control since I can't take much of anything orally. But Chromium supplement helps with this to some extent.
I don't have a blood glucose monitor, the hospital doctor who set me up on TPN didn't feel it was necessary (will talk with my current doctor about this next week).
I'm allergic to fish & coconut, including the oils from these foods. Just rubbed some Avocado oil on myself...my skin sure needs it.
Thanks for the list of triggers. I suspect today's episode was triggered by an acupuncture appointment yesterday. I won't be going back for another one after this experience today.
Yes, my adrenals are shot to pieces...cannot handle any surprises or stress at all. My doctor just put me on a very low dose of Hydrocortisone to help with this, but the pharmacy doesn't stock it so I'm waiting for them to fill it so I can start the medication.
I "eat" whatever my stomach will let me put in it (which isn't much...one bite of yogurt a day for 2-3 days in a row, and then stomach says 'no' - so I have to listen to it).
I 'woke up' with the tremors, so no fluorescent lights (don't like them, don't have CFL's in my house).
Ran a little over half a liter of hydration last night, but may still be a little dehydrated (it's been warm & dry here for weeks).
Thanks for all the info. I'll certainly be discussing this episode with my doctor next week.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- The term "seizure" can be scary - and so can what you are experiencing. TuTu's suggestion of myoclonus is a good example of that "spectrum"
Myoclonic "activity" or "events" are usually just into the low end of the seizure spectrum but can also be more intense. Again, MAGNESIUM, ESSENTIAL FATTY ACIDS are the main things to balance "down" that over activity.
It's not so much about a label as bringing your brain back into balance (well, I do wish you could talk with a doctor so if you have one, do call them). I'm just going by what I've learned.
Be sure you are not taking anything with added glutamic acid / glutamate in it. That can trigger these kinds of events.
Be sure no "natural flavors" creeped in, that's MSG and an excitotoxin. Magnesium is the antidote.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
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Keebler
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- Chromium supplement - that has triggered seizures for me by taking blood sugar too low. Low blood sugar (especially with heat or stress) can be a trigger. Chromium was far too stimulating for me. I have to avoid it in any supplements.
If that Avocado oil is food grade, drink some of it now. If you can't do coconut or fish oil, you've got to get some good oils into your body. Rubbing it on is not going to do the job.
Do you have any other nut oils around, that are fresh, not gotten too hot? Can you nibble on some walnuts or macadamia nuts at least? Your brain really needs oil now - and likely some sugar.
Sugar (I know the pitfalls) but seizures can be a cry for glucose to the brain, too. And it can be needed for urgent care, especially considering the chromium that could drop you low.
Honey may not work fast enough, though if you have some, do let a spoonful soak into your mouth for a while. And with some kind of good oil so that it does not drop you later.
Back it up a bit with probiotics, of course. -
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Keebler
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- I know this is all a lot to take in. I hope you have the basics - or can call someone to gather those for you.
A glucose meter? Anyone you know have one they can bring over for you to use? It's important.
REST is the most important thing. When you have gathered some detail, try to get off the computer and stay off of TV tonight (other than may sedate travel videos. No commercials. Too much for the brain right now.
The hardest part is the - now what? when rest and quiet are so needed. But take your imagination on some vacations, do art in your mind, listen to some good solid Mozart. He's usually never too off kilter or sad and it's healing for the brain.
Harp music, too, or whatever soothes you. Know in your heart that you are taking care of yourself and that is what matters. All the questions will drift away in time.
Hugs, -
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WPinVA
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It does sound suspicious for a seizure and probably should be checked out by a neurologist. I'm not sure if you - or even a run of the mill doctor - would be able to tell for sure without an EEG.
My suggestions in the meantime would be:
-try to get one on video if possible
-keep a log - recording how long they last, which body part, which side of the body, etc. That can tell a neurologist a lot.
-look on Youtube for videos of seizures and see if any look like what you're having (sounds strange, I know, but my son has epilepsy and at his last neuro appt, the doc told us to do that so we'd be prepared in case he has a different type of seizure.
-www.epilepsy.com lists different types of seizures and what they look and feel like.
Finally, it will likely take a while to get in with a good neuro with an epilepsy specialty so II would give your LLMD or primary doc a call!
Don't be deterred from checking this out by the abysmal response you got from the ER last time. My son's pediatrician didn't recognize his seizures either and was utterly condescending to boot. Good thing he has a stubborn mom. ; )
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Keebler
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- Razzle. Iodine can be a bit too stimulating.
Check the dose to be sure it's no more than 12.5 mg a day, the physiological "replacement" dose - and never on an empty (but with TPN you never have food in your stomach, so? it that in your IV?),
as if a pill taken on an empty stomach, it can cause nausea (and nausea can drop blood pressure, trigger vertigo and cause a cascade of events that can land you where you are now).
Check the dose, for sure.
For others who may be able to help with this puzzle. Some detail.
. . . head pressure sensations that randomly wander around my head?
. . . like the bones in my head are too small. But in random places all over my head, not all in one spot.
This is a new symptom for me as of today...
Current meds are (been on them a long while): Flagyl, Cefazolin, Zofran;
I'm also taking probiotics, molybdenum, chromium, iodine, and am on IV food (amino acids, electrolytes, vitamins, saline - via PICC) since I can't eat anything.
and: IV nutrition (TPN) is usually gluten-free...it has to be pretty pure (no whole food proteins or food protein peptides; amino acids only) to go in the veins. . . .
Magnesium is in the TPN (IV food), which is infused over a period of 16 hours every day...so yes, it's not given all at once...
Aug. 19, posted: . . . Found out there was a change to the trace minerals added to my TPN. (end Razzle's recent posts) -
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Keebler
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- PLASTIC in your IV / TPN bag a new kind? This matters, so do inquire. Some of the bag manufacturers are in short supply and there is a change to the material used in some IV bags now.
I hope you can incorporate some other kinds of food soon.
For LATER:
Yes, if your LLMD can guide you to a neurologist. They may be able to identify something. It's important to take that step.
Just be aware that not all seizures can be identified by an EEG.
Some of the kinds that affect those with lyme can work via different mechanisms than epileptic seizures (for example, TOXICITY triggered seizures may not originate from one place in the brain as they cause over all brain nerve hyper excitability).
The toxicity connection is why some seizures in those with lyme are not recognized by most neurologists. Give any person toxins to a certain level and seizures can happen, but that is different from epileptic seizures.
LIVER SUPPORT may be a solution.
Not all seizures are connected with a seizure "disorder" or epilepsy. Anyone can have a seizure at any time during their life but it may not ever happen again.
It's just that for those with lyme, et.al., there are some things that "venture into that neighborhood" that may or may not be a separate diagnosis -- or even be more than a blip on the screen.
With bodies / brains so tender and ready to trigger, so to speak there are many things to consider that can cause an episode (or repeat episodes) of over stimulation that would cause the body to try to zoom to the moon.
Inflammation, nerve impingement (especially in the neck) . . . on the list of possibility connections.
Similar with adrenal issue triggered seizures or those with vestibular triggers involved. They may not register on a monitor if they cause wide-spread brain stimulation.
But that is why it's best to see a neurologist that is recommended by your LLMD -- so they may know a bit more about the fuller range of variables.
I'm not the only person with lyme to have seizures that baffled the "common" neurological workup and the EEGs.
Twice, the technicians would whisper to me afterward that my brain waves were "very, very slow and unusual" and that "could explain why they saw seizure like activity that the doctor won't see or count" and call it "artifact" -
- but 2 different technicians said they should not be telling me this but they thought I should know - as something WAS off kilter but the test would not report that.
A 3rd technician thought the equipment was broken by the way it reacted to me. That did not go well.
But - 3 QEEGs found it. All with different people (an audiologist, a ND, a PhD.), different times, all identified the part of the brain that seems the loose cannon for me.
A QEEG is much more sensitive but most MDs do not do it. A "Functional EEG" is close, though.
Myra Preston, PhD, has done some good work with QEEG and the kind of seizure activity in the CFS population that applies here, too.
for later, in a few days, when you are recovered a bit:
Topic: Best way to control limbic seizures / overactivity?
Many LINKS - explanations, solutions -
[ 08-22-2014, 10:59 PM: Message edited by: Keebler ]
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Keebler
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- Also for LATER just needed to be sure it's included.
GLUCOSE METER should be obtained. Many companies give these to patients with a few test strips. The replacement test strips can be spendy, though.
IMO, anyone who is not eating solid or pureed foods and relies solely on IV nutrients MUST have their glucose levels monitored. I think it was wrong to refuse your previous request for this. Still, you can get on your own, then.
If a doctor would order it, though, test strips might be covered but many insurances don't cover them even for diabetics (and many doctors don't see the need for monitoring in cases of hypoglycemia. But I do).
Contact your area diabetes support groups to see if they can help . . . or look around on line for brand that will work for you (and check price and availability of test strips). Contact them to see if they could give you a meter. Likely, they will. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The muscle jerks are probably what is called myoclonus or myoclonic jerks. Not exactly a seizure, but definitely a neurologic symptom.
Unfortunately if the muscle jerks are severe they can actually cause too much artifact and an EEG may not be able to be interpreted -- happened to hubby several times.
Actual seizure meds may or may not help - regardless of whether what you are experiencing is "true seizures". Very much a trial and error experience and must be individualized to the patient.
Infections, toxicity and nutrient deficiencies all play a part in resolving this problem and usually there is no quick fix.
Tremors may be due to nerve damage (peripheral neuropathy) or imbalances in neurotransmitters (dopamine/ choline or acetylcholine). Actually too much or too little acetylcholine can cause tremors.
If tremors occur during sleep then they are more likely to be infection or toxicity related.
This is not medical advice, just my opinions based on hubby's experiences.
Bea Seibert
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Razzle
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Wow, thanks for all the replies.
I am not able to take any fats orally - it is too much for my digestive system to handle right now. I'm allergic to all nuts and most all seeds. So topical is the only way I can do fats at this time...
I did not use the Brain Power oil until after the shaking, tremoring & jerking started. And it was the only thing that calmed them all down.
So I did have an EEG after the first episode hit me a few years ago...results were normal. I did not have any tremors during the test, though. And the EEG test itself caused me to experience severe pain in my head the entire duration of the test. Don't know why.
I've been using the Iodine (Tri-Quench - 19mg per drop, I'm using 1 drop/day) topically and was doing fine with it prior to the acupuncture treatment Thursday...
Need to supplement it 'cuz there's none in my TPN and my thyroid tests were getting worse and worse (TSH rising). How would I decrease the dose? Do I need to, given topical use (difference in absorption)?
I should also mention my doctor has been tracking elevated ammonia levels in my blood...which may be a contributing factor to these tremors...
As far as I know, there haven't been any changes in the plastic in my TPN/hydration supplies...will double-check though...
Thanks for all the info...I have my homework cut out for me I see
Edited to add: Oh, I can't lie down horizontal. Makes my vertigo go completely crazy bad. I have to sleep in a recliner so I can have my head elevated a bit.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- The iodine dose seems right on. Sometimes, people take too much. 19 mg in one drop per day is in the right range. Better earlier in the day, not too late.
Well, the Brain Power seems to work for you then - if you feel that it calms your brain.
Ammonia levels, ohhh, good to keep tracking that as it can certainly relate. I'd even start there. Ammonia is toxic to the brain so it's best to try to keep that down in the bloodstream.
Just tracking may not be enough (or is it tracked often enough?), though, so I hope there is some sort of on going support method - maybe that needs to be reassessed. It's not an uncommon issue for some with lyme. Very specific liver support all the more important to help with that, too.
Take your time with all this. I was just trying to think of things that might be an "ah-hah!" and then have it all just go back to normal. But you may have just hit the main point there with ammonia.
That's all the more reason to be sure you are not getting additional glutamine / glutamic acid above the daily requirement. There is a connection between too much glutamate / glutamic acid and the neurotoxicity especially when too much ammonia is along for the ride.
You say this has happened before. You might think back as to some keys then.
Hope you can snuggle down now to catch that dreamland express.
Rest, however you position yourself for that, is key. Rest your thoughts, too. One thing at a time. Good luck. Sweet dreams. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Omega3...flax seed and almonds will give you some.
Myelin Sheath is coming to mind, not sure why.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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Keebler
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- hermit's suggestion of myelin sheath is excellent. As you do TPN (IV nutrients) and aren't consuming food . . . where are your greens coming from? We have to have greens for our myelin sheath support.
Are you getting some green powders in water? Chlorophyll?
And hermit's suggestion of Flax if you can't eat fish (or some nuts, I forget which ones) . . .
and that leads me to ask about HEMP OIL.
You did say that you can't seem to digest fats and hope they can get through your skin. I'm not sure that's enough to get into the blood stream and reach brain tissue.
Could you put some oil in your mouth and just try to absorb as much as you can in your mouth, very slowly swallowing? -
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Razzle
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I get blood tests done every week (standard procedure for TPN management).
Ammonia has been tested two or three times...will discuss w/ my doctor. He did mention he wanted to test it regularly, but I think he forgot to include it this last time (but I'm not sure).
Oh I wish I could eat the veg. oil. When one has not eaten food for years, one has to start with foods as if one is an infant. So I have to be extremely, extremely, extremely careful about quantities, ingredients, etc.
When I can eat normally, I don't tolerate vegetable oils hardly at all. Butter (organic only) has been better tolerated, but not in large amounts (fats aggravate Gastroparesis, which is the diagnosis given for my inability to eat now).
Flax oil does not sit well, never has (often tastes like mold to me). I'm allergic to all nuts (& anaphylactic to hazel nuts). Have not tried hemp oil.
Greens - none, not while on TPN exclusively like I am now. Chlorophyll supplements (liquid) are usually derived from alfalfa, which I am extremely allergic to...
What is in the greens that supports the myelin sheath? I get B12 injections weekly, and B Complex vitamins in my TPN daily...
Thanks again for the replies & info...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- Greens powder in water. Spirulina, Chlorella, Gotu Kola, Stinging Nettle LEAF powder (not root) . . . all these green powders have fabulous properties. All can be stirred into water. -
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Keebler
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Living (Well) with Gastroparesis! – by Crystal Saltrelli, CHC
A Gastroparesis Patient-Expert and Certified Health Counselor . . .
. . . professional training in Health Counseling and Holistic Nutrition at IIN . . .
. . . seven years of personal and professional experience managing the physical and emotional symptoms of gastroparesis. . . . -
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Razzle
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Low BH4 has been linked to Gastroparesis (search PubMed.gov for articles).
BH4 is used to detox ammonia.
I think a big, big player in my Gastroparesis is the ammonia depleting BH4.
This is one of several Methylation issues I have (also have to deal with CBS up-regulation, an MTHFR A1298C mutation (which further decreases BH4), and severe sulfite sensitivity).
Talked about this w/ my doctor a couple weeks ago...he is working on some recommendations for me on how to increase BH4. May have to take a BH4 supplement somehow.
I used to eat nettle leaf powder every day before my stomach crashed. It's pretty rough on a tender tummy like mine is right now, but would tea made from nettle leaf be ok to start with? I might be able to get a few sips of tea down...
I also have difficulty swallowing, so I may have to do the tea through my G-tube. Would not be able to put nettle leaf powder through the tube - even if put in water, it is too thick/sticky and would likely clog the tube.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- It's best to talk with a specialist on this, like the author of that book who has been through this herself (although not with lyme).
I don't think a few sips of the tea will do anything at all, really. It's not going to have the degree of chlorophyll but a tincture might have more nutrients. The tea is just leafs swished in water. It will have some properties but not in terms of a food substitute. Somehow, the actual plant needs to get into us. That's the food.
There are various plants that are "powdered" from which you could choose (with professionals advice). Even 1/4 tsp in 4 oz. of water is better than nothing.
A tincture sort of pulverizes the plant during the process so maybe . . . still, it's time for the professionals to take over now, I think. Maybe that book will be of help &/or you can connect with the author. -
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Razzle
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Thanks Keebler & everyone else who has contributed on this discussion. I have a lot to discuss with my doctor next week!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- Brussels just posted on another thread:
"Gut issues for me were mostly solved with chlorella. That is my magic plant, for years, during lyme, and now, after lyme.
During lyme, without chlorella, I didn't even have a life. With chlorella taken 3-5 times a day, I could even feel I was not sick, some days." (end quote) -
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Keebler
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- So, there is a food tube in addition to the IV TPN.
Any green powder can be mixed in with whatever goes into the tube. Other foods, too, pureed. Of course, someone expert in food tube and TPN should advise. But someone who thinks beyond the industry chemistry of the processed food tube "products"
and who will understand and work hard to figure out the
"several Methylation issues I have (also have to deal with CBS up-regulation, an MTHFR A1298C mutation (which further decreases BH4), and severe sulfite sensitivity)." (end quote from you)
But if you aren't getting some real food, real color, it's hard to see how the cells can really get enough antioxidants and other key nutrients. The myelin sheath really needs those colors.
I know the author of that book posted above used pureed foods in a food tube for while.
Brussels' Chlorella post is very encouraging. You could even just let that "melt in your mouth" as you sip it or suck on a tablet - I've done that. It will ease down but most really does seem to get absorbed in the mouth.
My guess is that nutrients play a key role in the muscle / neurological symptoms here.
Glad to see you are up and about today. Do take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Spirulina is thought to be the stuff that fed the Jews while roaming the dessert, food from heaven. You can buy it by the pound from nuts dot com.
I think it has a sea weed smell that I turned my nose up to. But just this will sustain a person.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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Elevated blood ammonia could definitely be a contributing factor to the neuro symptoms.
The first time hubby did IV rocephin despite using probiotics he developed a blood ammonia problem - to the point of hepatic encephalopathy. It was especially obvious after eating high protein meals - movement disorder symptoms became 10 times worse than normal.
He tried herbs and supplements for about 3 months that did not help. A doc did eventually diagnose him with klebsiella and enterobactor and maybe a 3rd bad G.I. bacteria. Those particular bacteria actually produce ammonia.
The Dr B prescribed levaquin for bartonella. It also treats the bad G.I. bacteria I listed. Worked very well on the blood ammonia problem but did little for the bart.
Bea Seibert
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Razzle
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Yes, I have a feeding tube, but it goes into my stomach and my stomach keeps saying "no" when I try to put stuff into it regardless of how it gets into my stomach.
The only things I can actually put in my stomach right now are:
Sugar, candy, ginger candy (small amounts)
Water (a few sips, or 20mL/day via G-tube)
PicMins from Thorne (trace minerals; works ok orally if I have something else to get the acidic taste out of my mouth after, or can be mixed in water & put in via the G-tube)
Probiotics (chewable)
B12 spray (oral/sublingual)
Molybdenum & Chromium tablets (chewed, or "melted" under my tongue)
Hydrocortisone (chewed, or melted in water & put in via G-Tube)
Domperidone tablet (chewed, or melted in water & put in via G-Tube)
Zofran (chewed, or melted in water & put in via G-tube).
Sometimes I can get by with a bite of organic pasture-fed dairy yogurt.
Everything else (protein, dextrose, electrolytes, trace minerals, vitamins, hydration, Flagyl, Cefazolin) goes in via the PICC line, or topically (iodine, avocado oil, other essential oils as needed).
I tend to not tolerate anything from the ocean. I think it may have to do with my sulfite sensitivity, and also my fish allergy.
Bea - thanks. Yeah, I know my gut bugs are seriously messed up, which is why my doctor has me on the Cefazolin and prefers I stay on the Flagyl too.
So we aren't just hitting Lyme, we're trying to keep me from getting out of control with other infections (I'm prone to skin infections).
But I need to get back to using the Ray Tube Machine...got off schedule with it about a month & a half ago when dealing with a severe skin infection on my neck.
Tried the Hydrocortisone this morning and it definitely improves the motion sickness, vertigo and the tremors/jerks.
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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MichaelTampa
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quote:Originally posted by Razzle: I've been using the Iodine (Tri-Quench - 19mg per drop, I'm using 1 drop/day) topically and was doing fine with it prior to the acupuncture treatment Thursday...
Just to toss in what I have heard about iodine. At one point I was taking 1 drop/day of the TriQuench. My doc said that was too much, that it would shut down my thyroid, or at least would for most people. He said that is what they used to do for people with overactive thyroid, was give them iodine.
He has me on 1/2 drop per day. I measure two teaspoons of water into a shot glass, add the drop of iodine, let it mix together, then take out one teaspoon from the shot glass. What remains contains 1/2 drop of the iodine.
As far as impact of putting on the skin rather than through the mouth, I don't have any idea on that.
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Razzle
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MichaelTampa,
Thanks for the info. I don't intend to keep using the topical iodine once I can eat food again.
Currently, I am not getting any iodine from any other source. The TPN does not contain iodine, nor do any of the other supplements I'm taking.
Most people are eating other foods that contain small amounts of iodine...
I feel better the days I remember to use the topical Iodine. If I accidentally drip out 2 drops, I try to immediately wipe off the extra drop so I only get the 1 drop daily.
Oh, also, I am getting selenium in my TPN and in the one mineral supplement (PicMins). My understanding is that iodine without selenium is bad but when both minerals are taken it is ok.
Maybe that's what suppresses the Thyroid - taking iodine without any selenium? I don't know...
Thanks for the info on how to split a drop in half...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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WPinVA
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It is sometimes hard to pick up these types of things with a short EEG. So, one more thing to ask your doctor about is whether to do an extended EEG - they can do them for 24 hours or more. My son had one for 5 days. It was very illuminating and picked up all sorts of things that the one hour ones had not.
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Razzle
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Thanks WPinVA, that's good to know.
These episodes are getting worse...had a particularly bad one last night, after which I could not open my eyes, speak or move for about a minute or so after. How do I know when I should go to the ER about this?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- you say: "after which I could not open my eyes, speak or move for about a minute or so after." (end quote)
That's normal. Don't move. DO breathe, of course, and you may need to remember to do that as soon as it lets up. Stay down for at least 20 minutes or longer. Don't hurry to your feet.
Q: "How do I know when I should go to the ER about this?"
I've learned: never. Of course, that may not be good advice for others but I have never received adequate medical attention for any of these kinds of experiences. And the times have been many.
Personally, I'm to the point now where I vow to never go to the ER again. I will figure out what to do myself -- and if my (non-LL) ND or my regular GP can shed some light, great. But it's mostly up to me. I can do much better than any of the ER doctors who kicked me out for having seizures in their presence. Now that I know about
MAGNESIUM, glucose levels, etc.
For you, since you do have a LLMD, I would call them tomorrow and have a short conversation with the office manager about your next step.
It won't do well to just wait it out. You need to figure out the triggers, the "set up" so to speak that is creating this situation in your body -- and then list all the tools to have for your very own emergency kit, right at home.
Also discuss with them how you would know if you need to get to the ER if your tool kit falls short.
As voiced in my previous posts, it seems to me that nutrient & calorie intake (if not THE "set up" or "trigger") are a key part of this. -
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Razzle
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Thanks Keebler. Yeah, I'm not too fond of the ER myself...
I actually haven't been seeing the LLMD recently...financial situation changed significantly last year (hubby downsized out of his job, new job pays much less) and I just can't afford it now.
So I'm working with a local LLND who is also my Primary Care doc. But ok yes, I will try to contact him Monday instead of waiting til my appointment later in the week.
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- I hope you can call first thing in the morning.
In the meantime, if you get a sense that the ER is the place to go, listen to your inner wisdom on that, of course. If your LL ND is your PCP, she should have a service that would contact her off hours so she could guide that decision.
Some insurances require a patient contact their PCP before going to the ER, if reasonable & possible.
The LL ND (if ILADS educated) will be familiar with what you describe - even if just by having talked with other LL doctors about this at conferences, etc.
If she is not, ask her to contact the LL ND in Tigard, OR as when I went there years ago, I was told "oh, yes. I've seen THAT before. It all makes sense." My guess is yours will know who that is if she want to confer. But your state also has several experienced LL NDs, too.
This kind of seizure activity is not out of the ordinary for lyme & co. - although the TPN and feeding tube add variables (and calorie / fat / nutrient intake may need review).
And there are likely variables not even mentioned here as well.
Ammonia &
Glucose levels should be checked, too.
Arrange to get a glucose meter for yourself ASAP
and if there are some kind of urine test strips to check ammonia in the urine (? I do not know?), do what you can to set you a monitoring situation right there at home.
The LL ND should be able to help you plan a check list of things to help, too. Try to read the articles in the seizure thread, some are excellent for problem solving.
Now, as mentioned before, these episodes may not be actual "typical" epileptic kind of "seizures" yet can fall on the seizure spectrum (and can be due to something other than a particular place in the brain thinking it's Fourth of July).
I use the word "seizure" not as the diagnosis but as the action, muscle activity is seizing -- or if just tremors, then just tremors but it sounds like contractions (strong seizing moments in the "jerking" you described) are involved, not just shaking.
Myoclonus, as others mentioned, may be a better way to describe the action (if it fits). That's often on the lower end of the seizure spectrum (yet can also vary in intensity)
Again, magnesium and a good oil that can actually get into the brain are both key to setting that balance straight again.
The "seizure spectrum" can be a long yard stick with room for all kinds of variations.
This can get better. And as you explore just how the bleep that's going to happen, you will likely discover some things that needed to be addressed and balanced anyway.
This lastest shake up (hee-hee) is just your body's way of saying: now's that time. -
[ 08-24-2014, 08:19 PM: Message edited by: Keebler ]
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Razzle
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Thanks Keebler, you've been very helpful, and so have all the other people who have replied here.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
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Update - Monday evening's episode was followed by a couple minutes of inability to open my eyes or speak, and about 20 minutes or so of inability to move anything below my neck. Really disconcerting!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
One thing your doc might be able to prescribe is IV glutathione. When hubby's spells were at their worst I would give him IV glutathione to "wake him up" and get him into bed and then I gave him IV Ativan.
We used either 500 or 1000 mg of IV glutathione per dose and I gave it to him 2 or 3 times a day for many months until we had the infections under better control.
It does sound like an EEG might be needed at this point. You might get lucky and it would be of benefit. A seizure med might also help. Other than Ativan, Depakote is the only one that had any benefit at all for hubby.
There was one other one that he thought might have worked except he had an allergic reaction (hives) - that one was Dilantin.
Bea Seibert
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Razzle
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posted
Thanks Bea. I much appreciate your inputs.
Ativan causes memory loss for me (was on it for severe nausea) - do other seizure meds do that, too?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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WPinVA
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This sounds concerning! What did your primary say?
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Razzle
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He's not in the office on Tuesdays. Will talk to him tomorrow. Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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WPinVA
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I hope he can help, particularly as to guidance on when to go to the ER. My understanding is that new-onset seizures are a medical emergency.
Also, another test that you may want to ask about is an MRI. My son had one as part of his initial workup. (It may not be necessary in your case if your LLMD feels that Lyme is causing the seizures or seizure-like episodes, but it is something to ask about.)
Re: seizure meds, the only one we have experience with is Keppra. It seems to be the drug de jour lately, at least for kids, as its side effects are apparently better than a lot of others. I don't know if it's used for adults too.
It does have side effects though, I think they all do as they are altering the chemistry of the brain. Side effects for my son were fairly mild - grumpiness and very mild memory problems. They went away with three things: 1) lowering dose 2) adding prescription Vitamin B6 (pyridoxine); and 3) maybe just time.
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Razzle
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Thanks WPinVA.
My doc said today he didn't think these were seizures (so what are they? - I guess I would have to lose consciousness for these episodes to be seizures?) but he did some blood tests to see if we could figure out what was going on.
He mentioned electrolyte imbalance as one possible cause, and ammonia toxicity (my sweat has stunk of ammonia for a few days). He didn't think I needed a glucose monitor (blood sugar tests every week are normal).
He did acknowledge this could be from the Lyme & co's.
He said he'd call me when the results come in (probably tomorrow or Friday).
He said he's leaving it up to me as to when to go to the ER, but did ask me to call him first if I do decide to go... So now I'm confused...isn't it an emergency if one needs to go to the ER? How am I supposed to know that if I'm all shaking and can't talk and stuff?
And tonight's episode was a double-feature...no sooner started being able to move my sleeping hand, and then I went right back into another episode. Glanced at the clock before the second one started, and by the time it had stopped, 20 minutes had gone by...didn't think it had been that long...
Hubby was trying to rub my back and hold me...but I couldn't talk and tell him to let go of me, I felt like I couldn't get enough air...
At this point, I'm scared, and confused, and don't know what to do.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
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I tried some essential oils and this is what helped (no seizure-like episode hit me the evening I put these oils on):
Idaho Balsam Fir + Copaiba -- a few drops massaged gently along my whole spine (top of neck to tailbone).
Sacred Frankincense + Valor (blend of spruce, rosewood, blue tansy, & frankincense in a base of coconut oil) -- one drop of each oil at the base of my skull on the back of my neck.
Did this at around 6pm or so, and I did not have any seizure-like activity and did not have any muscle tremors or jerking all evening.
First time in a week My nerves felt so much calmer after putting on the oils.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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- Is this doctor a LLMD? If not, IMO, only a LLMD or LL ND is qualified to fully assess this situation for you.
According to some neurologist, yes, loss of consc. is supposed to happen with seizures.
In reality, no, seizure can occur w/ or w/o loss of consc. there is a whole wide range.
Still, it does not matter what they are called. But, my guess the determining factor in if they "qualify" as official seizures is if they originate from the brain vs. other causes.
Is some point in the brain the point of origin? Or is the brain the secondary (or third) point of stimulation to then trigger more fireworks?
First domino to move or somewhere else in rank?
Still, when muscles seize and cause uncontrolled movement & spasms, that is activity on the seizure spectrum. And there can be many, may causes. And many solutions.
Not all seizures are "brain" or "epilepsy" though but most doctors just are not that aware of the fuller range (as mentioned in more detail in some of my earlier attempts to help explain the variations).
Do take care. And be sure you are addressing this matter with a well seasoned LLMD or LL ND. If they are not LL, they won't know all the variables. -
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Keebler
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- You spoke of being unable to breathe when you "came around" (my words, not yours).
Unable to move, well, that will work it way out. Don't fight it. Just wait.
But the gasping for breath, well, ugh. I have this tendency during and afterward - the ones that had the harshest startle triggers. It's the most frightening of all aspects.
You don't seem to have a startle trigger but you may well have some trigger that not yet been identified. Still, it may not be a sensory trigger but some internal trigger with homeostatis of this or that organ or system.
Still, as much as you can - even just in your thoughts as your body is being taken for a ride on a run-away carousel horse . . . know that it's going to be okay.
Try to relax from the inside and don't fight it. Just let your body relax into it. I'm not sure I really have a choice in the matter but it seems that I don't get so injury if the instant the sparks fly I just try to go along for the ride.
I have learned whenever I move my body, though, to always be aware of how far I am from any object that may be close were I to fall or "go flying" - and I keep a safety zone -- or at least awareness.
Sometimes, I've been amazed at how close I came to impacts on bad stuff -- so I think my awareness helps my brain somehow "know" to not go there -- but maybe over there. ?? Can't say for sure but it sure can't hurt to be mindful of your position around glass coffee tables, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- I disagree regarding your doctor's saying you don't need a glucose test kit at home. Definitely, IMO, and by what I've been told by EMTs at the scene of my unfortunate experiences is that it is vital - absolutely vital - to test blood glucose if you feel a seizure coming on, or right afterward.
To do so can prevent a trip to the ER and also help prevent other (out of words).
You don't need your doctor's okay to get a glucometer. Just get one. And use it.
In a previous post above, how to do that is detailed. Many can be obtained free - and you don't need a diagnosis of diabetes. I got a couple different ones over the years for "seizure disorder" and "hypoglycemia" --
Sure, at the time of the blood test weekly, it may be fine. But that is not the time your muscles are seizing. THAT is when you really need to check. And I would bet money that low blood sugar is involved -- or the result of the activity.
Seizures (regardless of the definition or "cause" category) can literally eat up all the available glucose and afterward, as soon as possible afterward, glucose needs to be replenished.
You have to empower yourself - no one else - no doctor - is going to do this so you have to learn all you can about the variables and cover as many bases as possible.
The most likely bases first. And blood glucose is THE most likely base to cover first. Again, it may or may not be the trigger yet it's often involved one way or the other.
EMTs have taught me very well about this. Not the doctors, the EMTs. And it's the EMTs who have kept me from having to call them again by empowering me with knowledge.
The knowledge I've obtained that few doctors really know much about seizures (and even the best neurologists know very little about the brain - it's so very complex, intricate and some seizures can't even be figured out - partly because I think they draw too narrow boundaries). . .
knowing that - at least available to me was no doctor who could help (and no access to a LL doctor), well, that's also what got me into figuring out what else I could do for myself.
If you can work with a LL doctor and a LLMD recommended other to help figure this out (if needed -- a LLMD may figure it out) . . . great.
Still, you are the chief monitor for your body. You get to call a lot of the shots in how much you learn to cover bases they may not be aware of.
The Wilson article in the "seizure thread" is excellent about covering bases.
Indeed, this can all feel so overwhelming at a time when it's much harder. Yet, it can be freeing in a way, too, to not rely solely on a doctor to figure it out
(especially if the doctor has not seen before the kinds of thing you are experiencing -- and most especially if the doctor is not extremely experienced in all matters of tick borne disease -- and, in your case the TPN and IV nutrients). -
[ 08-30-2014, 11:00 PM: Message edited by: Keebler ]
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Razzle
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Thanks Keebler...you're a fount of good info
Update:
I have no seizure-like or pre-seizure-like symptoms if I get the essential oils on my body before 6pm. I think time of day is my biggest trigger. 7pm-9pm. Doesn't seem to matter when I get the TPN hooked up.
So if I get the oils on me at least an hour in advance, no problem. If I'm too late, I get the pre-seizure-like symptoms, but still no tremoring or jerking, and no paralysis.
I'm also switching to the non-melting Zofran (the melting type has aspartame), and am off all the abx (Cefazolin & Flagyl).
Using Ray Tube machine and will be using some anti-bacterial essential oils for now to keep the Lyme/co's from going too crazy.
I think my body just needed a break from the toxic drugs...my liver enzymes have been elevated for a while (TPN side-effect), so I'm sure my body will appreciate the break.
Going to try to get some Artichoke for my liver, and just orderd PepZinGI to try to get my stomach calmed down, too (dealing with an h-pylori-like bug, also - treating w/ Ray Tube machine helps some, but need the stuff to heal the stomach).
The low-dose Hydrocortisone certainly helps the vertigo, too.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I am late reading all of this, but I hope the doctor's recommendations help you. I have tremors and jerky episodes at times where I can't focus, speak clearly or walk straight (not nearly as bad as the ones you are describing tho), and my doctor said to back off antibiotics until they clear up and then slowly start back.
Apparently these episodes are my form of herxing, where the dead Lyme toxins are overwhelming my brain and CNS. They eventually clear up and then I start the process all over again.
I also get in the early am due to adrenal fatigue and low glucose. I don't have a glucose problem per se, but sometimes my blood sugar just drops. I guess it is situational with diet and sleep, bc it is normal the rest of the time. I agree with Keebler about having a glucose reader at home just in case. Checking your levels right after an episode may provide additional clues that a weekly glucose blood test may not catch.
Hopefully everything is alright now. Toxic drugs and toxic die-off can wreck havoc on our systems. Hopefully the break will help heal you. Please keep us posted on how you are doing.
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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