posted
He is trying to get the word out just what lyme can do. I just thought some of you might want to see what I had to go through all weekend.
I have had lyme 20 yrs and only dx'd 5 yrs ago but was treated 5 yrs with another LLMD. This is the shape I'm in right now but thank goodness not all the time.
I just started seeing DR.J and have been in tmt for 3 weeks and this is what 2 days of flagyl did. I'm not on anything now till I go back next week to see Dr. J. I was doing so good with tmt till flagyl. We called them this morning and they said this was to be expected.
I do have faith in him that he will get me better. I am much better than I was before I started seeing him.
Just do search on You Tube for "Woman suffering from lyme disease" and the second one is the same except it has a 2 after it.
I will warn you, it can be disturbing so don't watch if you think it might be disturbing to you. As I've said before it's kind of like Mandy in UOS. If this upsets or disturbs anyone I apologize in avance. I was torn as to what to do.
The videos are not good as they are on the phone.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
this appears to be TONIC in nature. While it's very rough, I'm so glad CLONIC features are not part of that (that's the flailing, etc.).
Flagyl can be a rough ride, so it's encouraging to hear that your body is not always so constricted. It should get better.
You might ask your LLMD if you could add a formula with magnesium and taurine to your IV line.
Sublingual D3 and B-6, too. Methyl B-12 shots might do wonders. Maybe IV glutathione - but you have an excellent doctor and, this early in treatment, it may just take a while for the kicks to be ironed out, so to speak.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some links that have helped me (although the type & spacing in all are atrocious. See if someone else can copy, paste, edit and print for easier reading): ---------------------
ARNICA - BOIRON homeopathic - I take this right after a seizure and it reduces brain swelling.
ADRENAL SUPPORT is also very helpful as some seizures are the result of adrenal exhaustion and depletion.
Keep your head and neck as supported as possible to prevent strain - well, as much as possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks Keebler, I've added some extra mag even though I was taking quite a bit. My dr has me on a bunch of supplements. They seem to know what they are doing, I sure hope they do as I can't take much more of this.
I already had another one since these were posted. It was the worst yet. Very painful. My feet and legs were contorted and it really hurt. This lasted about 30 minutes. MY home health nurse was here and he's seen nothing like it.
It was posted too and it's a little more clear. I won't let him post anymore. LOL
I will look over your links when I feel more up to it. I'm always kinda out of it after these happen especially so many in one day.
Thanks for your help. Sapphire
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear of another one. I suggest that you not go to those links as they are all very hard on the eyes. After a seizure, you need to be very careful regarding TV and computer.
I can't even read those links. I've had those for years and had someone else fix them for me. Too long to post in a thread, though.
Even if you enlarge the type, the font can be irritating and the lack of paragraph breaks (run-on text with no white space) can trigger a seizure if you have any eye spasms (nystagmus) which is common with lyme and toxic infections.
Be sure to avoid any glutamine supplements. I'm sure you are off of all MSG and artificial sweeteners but do recheck all your labels.
Avoid anything with additives, even food coloring.
A Gluten-Free diet also helps me avoid seizures. Even a trace will trigger one about 3 days later.
Don't let your blood sugar get too low, as that can trigger seizures, too.
Take care. Rest well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
I just saw this. You said it lasted about 30 minutes.
Please call your LLMD ASAP, if you have not yet. But, I see it's 5:30 where your LLMD is. Still, leave a message.
If this is magnesium deficiency, I'm not sure oral will be enough.
This could also be from liver stress. Beta Carotene should help, if so. It's too complex to go into but if increased porphyrins are to blame, beta carotene is a good help.
As much as you can, try to breathe through these. Your brain could become starved of oxygen. I know with mine, during that tight tonic state, often I can't breathe.
So, if you can, focus first and always on deep breaths.
Your husband gently rubbing your feet is good, as long as that is not too stimulating for you. For me, that would help ground me at times (know where my body is in space) but at other times, it might just be too much stimulation.
Massaging the back of the neck & shoulders has helped at times, too, and that helps open up breathing.
Now, try not to fight the contractions. See if you can work with them - but do work on active breathing if you can.
Breathing and neck/head support and very important. Tell everyone around about that.
If you are not able to breathe for long periods of time (even for a minute) you may require an oxygen mask to help you out, as long as you are able to at least breathe shallowly to take that into your lungs.
You may need to be assessed for anti-seizure meds. All the other suggestions are good but, for acute seizures, some people need Rx to help. Your LLMD really needs to be contacted.
Send him the video links.
Keep electrolytes up but I'm a bit concerned about that blue/aqua bottle of liquid on the table next to your chair. I hope that is not Gatorade - some ingredients if so, can trigger seizures.
I hope your husband is able to scan the web for you as, seriously, you should avoid computer and TV until seizures stop.
Maybe some travel or art DVDs but the way the TV works can be too stimulating for now. DVDs are better - no fast action, though.
Hugs to you. This can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry for so much.
Avoid ALL Kinds of fluorescent lights. If you have any low-energy light bulbs, keep them off. If you have to, send someone out to buy the old fashioned kinds of bulbs.
Put lamps in your kitchen. You don't want your eyes exposed to any fluorescent lights or flash cameras. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks again Keebler. Hubby has been in contact with the dr about 5 times today. They have seen the videos.
I'm supposed to be up there Thursday and we're trying to figure out how I'm going to get there since every time I stand up I seize.
I'm on seizure meds and they had been working and the ativan will finally work. The last one I had they couldn't get my mouth open to put it under my tongue.
I was actually biting my lip which I had never done.
They have been checking my liver twice a week since I started abx so they are keeping an eye on that.
They are very thorough up there and I feel very good in their hands. Will find out more tomorrow what to do to get up there.
I will be on ringers lactate all the way up there. They said there wouldn't be anywhere to hang it and hubby said he would find a way.
I have an air mattress in the back of the Acadia that I ride on all the way up there and it's pretty comfy.
Not sure what we will do when we have to use the BR. LOL Go in Mickey D's carrying a bag of saline. LOL I can just see it now. Hubby always says, "whatever it takes".
Great advice on the breathing, if I can just remember it.
Thanks again, Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
posted
About the blue bottle on the table. My sodium level was down and my dr told me to drink the Zero Powerade to try to get it up. That's what that is but I went to salt tablets since that didn't bring it up enough.
It's kind of like pick your poison sometimes.
I wasn't too happy about the artificial sweetner in it but now that I've gone to the salt tablets these will have to go.
I'll be drinking my lemon water again. I was trying to avoid the salt tablets as I have no gag reflex and have a hard time swallowing pills.
I can put them in water but yuck. What we put up with. LOL
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You can dissolve some sea salt in with organic lemon or lime juice - or just with water. Sea Salt is best.
Absolutely, avoid ALL artificial sweeteners and ALL colors/dyes or additives. No one should be drinking them but, for those prone to seizures, they can trigger or worsen the intensity of seizures.
Emergen-C makes a packet that is an Electrolyte replacement and
Green Vibrance, a greens powder to mix with water and drink, can be very helpful. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
I am so sorry that you had to go through this. Sounds like you have a compassionate husband. I hope you feel better soon.
I tried telling my regular doctor about these types of seizures and about the pain and she started to play some sort of mind game with me!
She said "Fine, then, I will just take all your pain meds away and you can take T 3's when you need."
That's when I lost it!!!! I started to just sob like crazy!
I said to her, almost yelling, "This is not a game, this is not a game! , I don't care about the painkillers, take them! throw me into a mental institution if you want! I don't care anymore! I am in just so much pain, and sometimes my body won't even move! Last week I got stuck on the toilet and couldn't get off!"
Then my doctor (not my LLMD) had a change of heart. She first asked me if I thought I was crazy. I said no, but that a lot of Lyme people are treated as if they are. Then she prescribed me extra pain killers. She then said lots of nice things and said she knows that I am normally very composed.
She knows I have Lyme and knows I have strong herx's from them, but her hands are tied because she feels like she would lose her practise if she helped me. She would also get into trouble if she gives me too many painkillers.
What a mess.
Take care Sapphire! I will pray for you!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
Do you have a good LLMD? No dr I saw knew these were seizures until I saw Dr. J. My neurologist said they were not seizures and called them episodes. LOL They didn't show up on the EEG so he said they couldn't be seizures.
Dr. J says they won't show up on an EEG because they are caused by swelling in the back of the brain. What helpd me is ativan when I'm having one. The will crush one and put it under my tongue bacause I can't swallow during one of these.
Sorry you are having to deal with this too. I don't know what I would do without my family. They are my rock. They have been there with me the whole 20 yrs I've been sick.
You take care and I hope your "episodes" are few and far between. Mine, too. LOL
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Sapphire, your suffering looks so much like what I go through. My primary doctor says I have partial complex seizures and they won't show up on an EEG.
All the neurologists I've seen say I'm a faker or having "pseudoseizures". How I hate that word and hate their ignorance.
I do a lot of flailing around, and I slap my head, bite my tongue, pick at my clothes, etc. Sometimes I'll drop to the floor unexpectedly (drop seizure). I feel like my head explodes with an electrical storm.
I go through cycles where the seizures will happen frequently, and then they'll go away for a time. They always come back, though.
My primary doctor wants me to go to an epilepsy clinic but I am reluctant because I'm pretty sure, since I don't lose consciousness, that I will just get labeled again. With so many other issues in my life right now, dealing with my health condition has been on the back burner.
Take care, Sapphire. I feel for you, I can fully relate.
- Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
All I can say is been there done that. I don't have any videos, but do have some photos with hubbby frozen in various positions.
For him IV Ativan was about the only thing that would work. IV will work much better than oral. But at one time he was on up to 8 mg daily for a month in the hospital.
Hubby's EEG's were also mostly normal -- at least no seizure spikes -- did have abnormal slowing in left temporal lobe a time or two.
None of the other seizure meds -- he tried 6 or 8 I think -- did anything.
At one time for a couple of months when the IV Ativan quit working he was on IV Demerol -- ER's use that for muscle rigors. It also has mild anti-inflammatory properties which work in the brain.
I think hubby's longest spell lasted about 24 hours once in the neurointensive care unit of a hospital -- which was no help at all. I created a scene and told them I was going to give him some IV Ativan myself if they didn't do something. That is when they put him back on oral Ativan and oral Phenergan. During his episodes he would relax just enough to have spells of dry heaves. At the time he was tested for stiff man's disease which was of course negative.
I am very happy to say that he has not had a spell or episode in the last 3 months. And before that crash it had been about 9 months since he had a really bad spell. For hubby bartonella treatment stopped the muscle rigors type spells and then IV Rocephin seems to have mostly stopped his tremors, myoclonus and dystonia movement disorder symptoms.
But the rigors type episodes did not stop with just levaquin or rifampin or factive. It took the combo of factive and rifampin to make a difference.
I would suggest getting on a schedule with either oral or IV Ativan. We tried it for many years on an as needed basis, but eventually had to go on a schedule.
For a couple of years I would set the alarm and give hubby a dose at 4:00 a.m. -- at that time he was taking 1 mg every 4 hours I think. For him every 6 hours was too long in between doses when things were bad -- his metabolism used up the meds too quickly. He had actually gotten his oral Ativan down to 1/2 mg daily back in July before his last crash. But now he is on 1 mg every 6 hours and hasn't tried to reduce that yet until he is sure that the IV's have him stabilized.
Good luck. Please be sure to discuss the possiblity that bartonella could be the primary infection rather than lyme with your LLMD.
Tindamax was what caused hubby to crash back in July and landed him in the hospital for a week. So I can certainly believe that Flagyl might cause a similar problem. But hubby resumed the tindamax on his own (didn't tell me he was retrying it until after a week or two) and is now up to 250 mg 3 times per day. So that should give you hope that you can get thru this.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Sapphire, Just saw this. I'm so sorry!!!! Just sent you a PM before seeing this. Flagyl really kicked my rear as well. Flagyl is brutal. Hope you can make it to the appt. this week. I will be thinking of you!!!! Keep me posted...
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sapphire,
Sorry you are suffering so much. Keebler is right about taking the sea salt instead of the sodium chloride tablets for easier assimilation. Make sure you drink plenty of water.
You also mentioned you take emergen C. You can mix the salt in with the C. Oddly enough the combo of salt and vit C is what is known as the salt/c protocol, You may be aware of this.
Just so you know the salt is antibacterial as well as antiparasitic. You can have some really strong herxes from this. A lot of people with lyme are salt deficient.
Both salt and C are really good for the adrenals. Hope these seizurea stop for you and you start to heal.
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
| IP: Logged |
posted
sapphire , I have a great LLMD, I just never knew that they were seizures.
glm111---is there a special type of sea salt that we are suppossed to use?
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I use Real Salt sea salt and buy it at vitacost. I have used Himalayan and Celtic in the past, but find that this is very clean salt and inexpensive compared to the others.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
I've been doing 3grams of himalayan salt and C for quite a while now and my sodium was still low. It's coming up with the salt tablets.
Just got back from seeing DR J and he tweeked my seizure meds and put me on a 4 hour schedule of ativan. So far so good. I have to set an alarm or I forget to take it.
I had 16 seizures in a week's time. Very difficult to deal with. I have to stay in bed most of the time cause when I'm up I can feel them coming on. I was having them in bed so that's an improvement.
I start my abx again tomorrow. This time I will only take flagyl for one day and I'm so glad of that.
Sorry to all of you that are going through this, too. We will get through it. All good things take time.
Thanks for all the suggestions. He also added b12 injections and some other supplements. I feel very good about the Dr I chose.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If the body is not able to process certain meds, this is something to consider - some good herx management tips (such as Beta Carotene) here, too: --------------------
PORPHYRIA -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In case you are using a cell phone, you might want to switch to a corded land-line phone. Seizures were not mentioned in this lecture but they do bother me. After seeing this lecture, it seems clear that anyone with seizures should proceed with caution.
I saw this last night on BookTV.
The lecture had some amazing images (MRI or CT scan, or similar). The proof is in the images - the heat/radiation really invades the blood brain barrier, and targets soft tissue of the head.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic