i have uncontrolable sever head movements. my head moves on it's own really hard . sore throat
heart rate is 170
what is happining? they seem to not have a clue
what ks scaring is the head movments. first time i ever get.
it's been happining for 10 hours
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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nonna05
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Member # 33557
posted
you poor thing,, first I'll prayer for you do you have LLMD?
did you mention this,,,,,,,,many don't unless your already out there with label. I still say chronic infection...still doing labs etc....also high virus
dis something feel different after 2nd or 3rd pill. what else are you on
which disease was being treated at time
you could be having a major herx and had needed to start real slow.. this is a cyst buster and I think you opened some up,
do you have something besides tons of water with lemon you need to get die off out of you
sounds like the movie Under Our Skin
I've had smaller spasms when Herxing/or very low on magnesium, IV
.I'd even ask for in muscle/butt shot more than 2-3 ml since that is what I took every few days ,,,can they get a bunch of electrolytes in you /fast/you could even be having a big potassium low,
I know someone who went into A coma/
I'm not a doc..just having ideas from history.
CSM start off with half, see how you do then a full packet,,It looks like Tang, supposed to pull stuff (die-off/toxins)out/
OK Em. I'm praying and listening to proverbs right now,, Plenty other will follow and maybe not agree with a thing I said,
I heard cyst buster's can be tuff,but if you can get to the other side, maybe pulse in fewer days, that it makes a difference,. Others have gone without, I don't know how,
It took me 4 different times to get past the 4th day mark ,after that I did the 14 day. survived.
I think it made a change for the better.
I think I lost feeling in lower half of body for 30 hours on first try.
Slow down, breath as a if you're being cuddled,
If you're alone get paper and pad, notes, You can even ask for copy of labs right when they get them,,
,I just say I have to see it to absorb it in, with a big sorry.
check papers to make sure you don't get/approve chip being put in you.Unless you want it.
That's happened to 2 people I know and I didn't remember me until 2 weeks after hospital event.
praying, God be with you, it's scary....Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Are you still on flagyl? If so, so if they would switch you to another drug comparable that you know in the past you have been able to tolerate.
I had to go off of flagyl because of issues. It might be you are reacting to that drug.
Posts: 620 | From Ks | Registered: Oct 2011
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Tammy N.
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Member # 26835
posted
It could be that the flagyl was hitting something hard and this is how your body is reacting. I would try going off it and see if your head-jerking subsides.
Sending hugs. God bless. Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Flagyl could be the culprit.. It can cause neuro problems.
Ask if they could give you a B-complex shot or IV. They may not though!
Hope they figure it out!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
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posted
Sounds like a herx. It used to be said that the way to start this drug was very slowly, just a sliver of a pill and then work up.
Guess you can't do this in a hospital but alka seltzer gold can knock down a herx. One dose (2 pills) several times, hours in between. Don't overdo it.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Do you think it would be worth trying a couple of small doses, appropriately away from any meds that you *need that they are giving?
Posts: 146 | From South | Registered: Aug 2012
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posted
im in the hospital, they gave me some meds to relax the muscle, but nothing is working.
they told me they never seen a reaction like this. few specilasts are working on this
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I've had the head movements. Mine are not severe, and they are definitely related to Lyme and co.
This symptom can be part of any nervous system infection, and our population has many. It's possible the hospital will check you for infections, but the odds of them finding them all (or the most important ones) are slim to none.
You will likely be checked for autoimmune conditions. If steroids are prescribed, you may want further advice from an LLMD. Steroids are sometimes necessary, but can prove dangerous to disastrous for us. You would want help with that decision. Most LLMDs would treat the infections, even in the case of autoimmunity.
I'm sorry. It would be truly wonderful if we could get our needs met in hospitals, but that is rarely the case.
My head jerking resolved with ILADS-style treatment. When symptoms become this severe, it is dangerous to treat with a non-LL GP or to self-treat. You really need an LLMD to guide your protocol and manage herxing.
I know money is tight and you are hoping for a good outcome. You may want to check into grants and other types of financial assistance. They do exist.
I hope you can figure out a way to get the best care.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This could certainly be a herxheimer reaction. But all kinds of "liver support" are not equal.
Cholestyramine can be a fickle lover. It can leave you feeling as if you are walking on air, lighter for it taking out some of the toxic waste products . . . or . . .
Cholestyramine can cause this kind of seizure (which is what it sounds like it can be - the muscles have been seizing in the most literal sense)
because cholestyramine can leave you severely deficient in minerals such as magnesium and taurine - and deficient in key vitamins.
There are other ways to support the liver without pulling out all the good nutrients your body and brain reqquire.
I wished they would have considered an IV magnesim, taurine with B-vitamins (as TuTu suggested).
Fish oil right now is also very important. Your brain needs nourishment. The liver needs support.
I've had this happen for these reasons and these things helped.
Of course, brain, spine imaging, liver & kidney checks are important. But, for now, the obvious seems nutrient deficiecies could be related and can't hurt to consider while all else is being sorted out.
Any new exposures the chemicals, etc?
TUMARKIN'S CRISIS? Sure could be.
I would also take a look at the inner ear. This could be a kind of Tumarkin's phenom. where the inner ear is trying, even violently hard, to correct what it thinks should be your position in space but all signals are haywire.
I've had this happen due to the inner ear issues.
Flaygl is ototoxic, toxic to ear system (the vestibular system) that whole inner / middle ear / balance system.
Most doctors also said they'd never seen anything like it and dismissed me, so many times. I'd even been thrown suddenly out of chair, or to the ground . . . as if shot out by a cannon.
To be on the safe side, of course talk to your LLMD.
A combination of an ototoxic drug and an inner ear system that is compromised - and a stressed liver - can result in a mix of seizure activity. The inner ear can trigger seizure activity and that can "seize" just about any activity and function of the body.
I think, though, that it would be a good idea to stop any medicine that is ototoxic, support the liver & kidneys for a while.
Certain herbal supplements might fill in the gaps. Allicin is the one that comes to mind. Olive Leaf Extract, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
FWIW, my symptoms get much worse when I'm undertreating. Flagyl alone would not be a good protocol for me.
I feel so bad for you.
It sounds like they are treating this as a med reaction. I'm sure they won't consider herxing.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
OTOTOXIC medicines discussed - even after stopping a particular Rx, the inner ear can be off kilter for a while.
How to protect liver & kidneys - and ears - while taking meds that are required for good reason but can stress the ears . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
no improvement on head movement. it's jerking forward and from side to side..
i am wondering how long it's gonna last. this is day 2
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Tammy N.
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Member # 26835
posted
Hopefully the relaxers they give you will help, quickly.
In the meantime, try to calm yourself on a deep level....telling yourself this will pass....there is a healthy person inside and all will be well. Breathe deeply into your belly and believe you will be ok. Calm and soothe yourself deeply. Keep breathing.
God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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canbravelyme
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Member # 9785
posted
Have you been to see an LLMD? You are fortunate to be in CA, as there are some excellent ones there. If you don't have one, post in, "Seeking a Doctor", or PM me, and I will make some suggestions. Or better yet, PM TuTu, who has the master-list.
Hope you feel better soon!
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure to get some liver support into your body in case the muscle relaxers stress the liver. If they do, they can also stress the inner ear - and if the inner ear is connected to this, well, it may still have it trying to figure out which way is up.
Try to rest with your head at a 30 degree incline. But not just your head, your whole torse from hips up should be supported with head/torso at a t30 degreee incline higher than feed.
You can do this with a few pillows, just so your neck or back don't get strained.
A 30 degree incline is the most neutral position for the inner ear. It' about what one or two bricks under the legs of the head of the bed would do.
GINGER CAPSULES and MAGNESIUM, & TAURINE would be what I'd ask friends to pick up at a health market. Ginger is especially good to help calm the inner ear but it, and others suggested, can also help reduce inflammation in the brain.
Just in case you might be vegan or vegatarian, that can result in taurine deficiency if not supplemented. Taurine deficiency can cause neuro damage. Taurine supplements can calm down muscle seizures.
DANDELION TEA or capsules might be a good basic liver support until you can figure out more.
And sublingual B-6, P5P, B-12 with folic acid. This helps the ears and the brain. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- STREP ? You mention a sore throat.
I hope they did a strep test at the hospital ?
I tend to focus on support methods and what can help right now. I'd like to think the doctors would have at least considered infection connection.
Any number of infections can cause your symptoms (including lyme but also some maybe not yet considered).
Strep can do this myoclonus jerking.
If your doctors at the hosptical did not consider it, I'd push for a strep test.
I WOULD ABSOLUTELY INSIST UPON A STREP TEST. Because, if strep, it could be fatal if left untreated.
Not to scare you but to hit home the importance of this. Sore throat, neuro-muscular "myoclonus" or whatever they want to call it -- together it says: test for strep.
As you are still in the hospital, it should be easy to request this. If they did one and it was negative, ask for another one, just in case.
Other than that, have they considered fungal infections? That you had such a strong reaction to flagyl could indicate a fungal infection going all "herxheimer" -
[ 04-11-2013, 03:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Carol in PA
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posted
Ema, You took Flagyl for a week and a half. When did the sore thoat begin?
Does the head jerking stop when you are sleeping?
Low magnesium can cause rapid heart rate and muscle spasms, along with many other symptoms. Since you are in a hospital, I know you can't do anything without your doctor's orders.
See if you can request foods that are high in magnesium, like almonds and beans. Kidney beans, black beans, baked beans, refried beans, bean soup, bean burritoes.
It would be faster to get magnesium via an intravenous drip or by intramuscular injection, but most doctors won't realize that you need it.
If this is low magnesium, it could be due to a herxheimer reaction to the antibiotic. The liver uses magnesium to make glutathione, which it needs to detoxify the poisons left behind by the dead Lyme bacteria. So you need to replace that, or you get symptoms.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
- Speaking to the importance of glutathine, be sure to avoid Tylenol (acetaminophen) as that BLOCKS glutathione throughout our body and can make things so much worse.
Sadly, they pass this stuff out like candy in the hospital. Even one dose can block glutathione all through the body.
IV Magnesium is sometimes used in hospital and that is a good pain reliever, too. It can calm spasms very nicely. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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. . . Even a single dose of acetaminophen can reduce the body�s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . . -
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Keebler
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posted
- Like others, I still think MAGNESIUM is the main thing to focus on getting into you. Still . . . in addition . . .
GLUTEN can also cause the symptoms you are experiencing. If you are gluten-free, be sure a trace has not sneaked past.
Gluten can cause brain swelling and all kinds of neurological symptoms, even up to 6 months after ingesting (for those sensitive).
I've had events as you describe happen 3 days after ingesting gluten unknowingly. It took several times to figure this out. Once a month, I used to go to a potluck and, each time, 3 days later, I'd get hit.
Turns out that I should not have believed others as to the ingredients they used.
ASPARTAME & MSG can do the same thing (and they hide under many names). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Try your very best to have friends and family bring you REAL food.
Categories of chemicals in this group are no better for those in hospital than for anyone else, yet hospital food is swamped in additives such as these:
neruologist believes the head shaking will go down on it's own in few days.
called LLMD, she wasnt sure why I am having this reaction. therfore, she told me see what the doctors tell you.
most doctors tell me they never seen such a thing. still in the hospital feeling horrible, and I can't sleep.
i just want to go home but they are not letting me because my heart rate is 200 when I stand up and 140 laying down.
any ideas? since everyone doesnt seem to know what's going on?
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Keebler
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posted
- Did you get a STREP TEST?
Have you asked about IV MAGNESIUM & TAURINE with some other nutrients (as you can't just put that into the blood vessels alone).
MAGNESIUM & TAURINE are your best bet to help regular blood pressure and heart rhythm and that can cover several other bases - and will help you rest, too.
IV GLUTATHIONE could be very good, too. It's turned around many such instances for several with lyme herxheimer reactions or liver dysfunction.
Avoiding gluten, acetaminophen & food additives (which are neuro-toxic & also neuro-excitatory and can clobber abilitity to sleep)?
I know all this seems like a lot of stuff but it all matters, all of it. -
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canbravelyme
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posted
It just so happens that I'm realizing how much havoc Dysautonomia can wreak. I believe the jump in your heart rate between sitting and standing could be a symptom of POTS (a form of Dysautonomia), so I did a search and found some are complaining about myoclonus (involuntary jerking) in conjunction with Dysautonomia: http://forums.dinet.org/index.php?/topic/18800-myoclonic-jerks/
Please get them to check for this � be advised that if they do a tilt-table test to diagnose POTS, they may want to use a drug to stimulate your heart which, if I were you, I would determine whether it was absolutely necessary to take, considering you're having some kind of physical crisis.
BTW, Dysautonomia is, from what I can tell, fairly common with Lyme.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
Keebler .. respectfully .. Please don't hound her. A person in a hospital has only so much control over things.
luvema.. Have they checked your heart as well?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Sorry, did not mean to be hounding. I replied with key points to the last post where she had just posted when her doctors came up with nothing . . .
"most doctors tell me they never seen such a thing. . . any ideas? since everyone doesnt seem to know what's going on?" (end quote)
I thought maybe if she could still ask them, it would help. They are key points. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I read through this and don't know more to add. Flagyl herxing makes sense to me. What I'm wondering is if that is the case, shouldn't your LLMD be more involved?
I would think LLMDs would know about herxing and what to do, or should be in touch with other LLMDs about what to do. And, be in touch with the hospital personnel about it. -?
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
The only problem is that most LLMDs do not have hospital privileges and hospitals don't want to listen to them then.
luvema may be able to relay info from her LLMD though
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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canbravelyme
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posted
She said she did, and that her LLMD didn't know what could be causing it (see above). And yes, Robin, one would think if she didn't know she would consult w / someone? What is it with doctors so rarely consulting w/ each other? I do so in my field all the time!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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I would think that LLMDs can consult with one another, even through ILADS? They should be able to recognize symptoms of herxing and be aware of good approaches for dealing with that.
If I were having a medical crisis due to Lyme treatment, I would want my Lyme doctor to be on top of it and finding out from other LLMDs, if they didn't know what to do themself, and relaying info to me at least about what to do. Yes, I know it's tricky with the hospital privilege issue.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
in the hospital they want to order a lyme disease test, I told them it wont e accure and they said they'll try to do their research. I am at a good hospital with a team of speciliets working with me. just so far it's a puzzle.. i been put on iv fluids two times.
strep throat I had that test done a week ago it came back negative.
i cant fall asleep because everytime I close my eyes I get a senseation that my whole body is rocking when it's not.
i feel weird and very weak.
someone mentioned pots, I've done a tilt table test years ago. I think I might have pots, but what is causing all this?
this is really strange to me. My whole body keeps shaking, my head especially. I am scared, I try to keep calm as much as possible, but I am afraid
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
Is it any better since you arrived at the hospital?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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canbravelyme
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posted
Lyme can cause POTS / Dysautonomia (there are different kinds, not just POTS); there is some "alternative" discussion that there may be a hormonal connection; Familial Dysautonomia is a rare genetic condition found in Ashkanazi Jews; finally, I've read many people have POTS or other Dysautonomia of unknown origin...
Personally, I don't see the point of their focusing on Lyme when you're having a physical crisis � Lyme attacks various systems, and I think the first order of business should be finding out what the h*ll is causing your heart rate to shoot through the roof, as well as what is causing the myclonus, and getting those symptoms under control. Maybe they think If they put you on IV abx, that could stop it?
Will your LLMD come to the hospital tomorrow, see you and speak with the doctors? I would encourage her to do that.
Crappy disease. Sorry you're going through this
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
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posted
I re-read your post, and I'm thinking you're asking not what could cause Dysautonomia, but what could be causing your symptoms. What I'm saying is that Dysautonomia could be a possible explanation for your symptoms:
Here's a list of symptoms from Wiki: The primary symptoms present in patients with dysautonomia are:
Excessive fatigue Excessive thirst (polydipsia) Lightheadedness, dizziness or vertigo Feelings of anxiety or panic (not mentally induced[citation needed]) Rapid heart rate or slow heart rate Orthostatic hypotension, sometimes resulting in syncope[1] (fainting) Other symptoms frequently associated with dysautonomia include: Gastroparesis (delayed gastric emptying), headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormal dilation of the pupils), constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures.[1] Dysautonomia can also present with orthostatic hypertension.[2] A full list of symptoms may be found at the Dysautonomia Information Network.[3]
I am NOT a medical doctor; the body is very complex, and many of the systems all work together, which is why a doctor has to ultimately figure this out. That said, if they're not coming up with answers, I think making queries about possible diagnoses is entirely reasonable.
All my best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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tick battler
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Member # 21113
posted
So sorry you are having these symptoms. My guess would be either a herx reaction to flagyl or a type of PANDAS reaction to strep. Can you have them check your ASO and Dnase B titers? It is a simple blood test. Even if the strep swab is negative (which it often is, even if there is strep present), these tests could show high strep.
Flagyl does hit a lot of infections and it is possible it set off a huge neuro herx. Can you get someone to bring you some clay or other detox agents? Bentonite Clay works well for us.
My son used to get motor tics when he was highly infected with lyme/coinfections/strep. He had head turning that he couldn't control and would ask me to hold his head still sometimes. The tics would increase with certain meds that caused herx reactions. Now that his infection load is down, the tics have disappeared.
I hope you feel better soon! tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Rumigirl
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posted
Ask the drs to give you an IV of magnesium. Usually, it is given as 1 gram of magnesium sulphate or chloride in 20 ml of sterile water over 5 or 10 minutes in an IV push---or as a drip. 2 grams would even be fine. Diluting it further is fine, also.
It is not so unusual for this to be given in a hospital anymore. They could give you one or more of these per day until your symptoms resolve. This helps with nerve, muscle, and heart problems, as well as anxiety.
Can anyone bring you the alma seltzer gold to stop a herx, as someone mentioned above? you could just drink it down, so as to clear your herx, if that is what this is, which seems more than possible.
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Carol in PA
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Member # 5338
posted
Alka Seltzer Gold? I looked for it at Amazon, and reviewers were saying that they couldn't find it at the stores. So Ema's family would likely have problems finding it.
Dang, wouldn't this be the same as mixing a teaspoon of Baking Soda in a glass of water? Baking Soda is sodium bicarbonate.
Well, people use Alka Seltzer for hangovers, so it must do something good for liver function. I know that sodium bicarbonate can neutralize excess acidity in the body.
Rumigirl said, "Ask the doctors to give you an IV of magnesium." Hmm, do you really think they will listen to a 21 year old, whose internet friends are advising her?
I agree that an intravenous dose of magnesium is a logical idea, as she is having symptoms of low mag. And because she has Lyme and recently took an antibiotic known to kill Lyme. Which can cause a Herxheimer Reaction.
posted
The hospital will not do a decent Lyme test, and that doesn't happen soon enough anyway. Someone more knowledgeable about you needs to get involved, and that person should be your Lyme doctor.
Am wondering if you can ask the doctor to visit you in the hospital, as CanBrave suggested, so you'll have someone you can talk it through with? Also I think the doctor should be consulting with other LLMDs about your symptoms.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In the meantime . . .
MAGNESIUM IV needs not mention of lyme at all. It treats so many of the symptoms you have. Same with adding TAURINE in with that.
If they do a magnesium test, a serum test will not work - it must be INTRACELLULAR, to see what's inside the cells. Chances are you are low and that would warrant IV Magnesium.
As for GINGER Capsules, with the rocking sensation you have, that could be an inner ear symptom, even medical abstracts at PubMed post that ginger helps with vertigo symptoms - and it can lower inflammation.
They may not have Ginger Capsules in the hospital but if your friends or family could go out and get a bottle, your doctors might be fine with you adding that.
At least Ginger TEA is something you should be able to use - but the capsules have a far better effect on the inner ear to calm the "rocking". Magnesium should help with that, too.
Is there an advocate from your local lyme support group who may be a good solid voice for you?
I hope you don't sign for any more lyme tests to be done. You don't need them, they will not be done correctly by the right labs and then could hurt you down the road - and you will have to pay for that.
ADVOCATE from your lyme support groug ? Not to get lyme treatment as that is just not going to happen in any hospital in the U.S. -- but so that you can have a voice for some of the other common sense approaches to symptom relief that they doctors are ignoring.
An Advocate might be able to look into the kind of strep test they did before. I wonder if a repeat might be better. STREP could be causing this, an advocate could look into PANDAS.
Other than being certain strep is not an inssue . . .
Main Goal: relieve symptoms and get you out of there. You will not get all your answers, still, the goal is to stabilize and go home.
Your best chance that you are most likely to be able to get is IV Magnesium & Taurine, with Glutathione. -
[ 04-12-2013, 12:19 PM: Message edited by: Keebler ]
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poppy
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posted
Most hospitals will not listen to lyme doctors, especially not ones that don't have admitting privileges.
I think it is a mistake to let them do a lyme test, knowing how inaccurate they can be. The hospital will not treat you for lyme, so what is the point of this?
Think I found alka seltzer gold in a CVS drugstore. Not sure though.
The IV magnesium and glutatione suggestions sounded good to me.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
my doctor at the hospital is willing to talk to my LLMD to understand the suitotion, but she isn't giving her number to talk to him... this is frustraiting
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
i am at a research hospital, and they want to know everything about lyme from my lmdd because he said their understanding it of it is minimal and they want to talk to my lmdd
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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they came this morning to do blood tests to check my hormones. They also did a maginsuim test and other vitamins.. I think that came back normal.
i am just hoping my lmdd would talk to them, i feel that she is carless. They are very understanding and trying to see. even one doctor at the hospital told me I think lyme disease got into your joints and heart, but they are waiting to talk to my lmdd and the test. I want her to explain to them that the tests ate not accurate.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
Most good doctors realize that Lyme affects the heart and joints. That's because the IDSA admits that.
I was sure hoping you'd be better today. What are they giving you to help? Any detox stuff at all??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Might these help? As they sound somewhat open to learning more, you might be able to just pass these links to them. You need to rest. Take care. Good luck
This is NOT to have them involved in your lyme treatment - they cannot do that. They are not well enough educated about it.
But, just to explain why you don't want to sign off on any more lyme testing, and if they are really interested in learning more:
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010 -
[ 04-12-2013, 02:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The more I learn about the human body, the more I realize the endocrine system (hormones) have an effect on everything!
Unfortunately, like Lyme testing, hormone test results are also somewhat controversial. Apparently, it is fairly commonly accepted that saliva cortisol tests (1 sample 4x day), are more accurate than blood cortisol testing, for example. Perhaps, ask to consult with an Endocrinologist?
What I would keep my eye out for in your shoes is a highly intelligent doctor, who is a really decent human being, who you can ask questions of, and get into an intelligent dialogue with. Then I would find out whether s/he might lead your case. But that's me. I read that you're 21 -- how are your parents handling this?
In keeping with what Keebler is suggesting, if they would like to find out more about Lyme disease, you could always suggest they call ILADS: 301.263.1080
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I don't blame your lyme doc for not wanting to get involved at that hospital. There are good reasons for this. Doesn't matter what the hospital staff says about their willingness to understand. They are going to take the IDSA view of it, which is why you don't want them to get involved in your lyme diagnosis and treatment.
The hospital should be looking for symptomatic treatment. I don't think magnesium testing is very good either. It does not look for what is inside the cell, is my understanding.
If this is a herx, it will eventually go away on its own. Hope you have good insurance in the meantime.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Have they tried Benadryl? There is a rare side effect of metronidazole (flagyl) that involves neck and facial muscle spasms. Benadryl often arrests the problem completely.
Posts: 60 | From Maine | Registered: Jan 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Hey, good idea about benadryl.
Posts: 2888 | From USA | Registered: Mar 2004
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Went through something similar although not as severely as you describe.
If I am going through an extremely rough patch with treatment, I often will get the head jerking -- it happens every few seconds.
It ties in with so many things that it's pretty hard to discern what is what.
I found if when one of the infections gets ****ed off, I can go into a pretty hellacious mode -- very little or no sleep. Alot of wierd stuff with my throat feeling as though it is closing up when I try and lie down and get some sleep --- and eventually the head jerking begins.
It's alot like the Myclonus jerking I would get early on when I was first displaying sxs
Here's the thing, about 4 years ago I ended up with heart spasms --- and a hell of a sore throat as well -- when I first went to my GP to find out what the problem was, the nurse happened to do a test for strep. It came back positive ----not saying it stopped the heart spasms, but there had to be some sort of a tie in, IMO
Many times when I really hit something hard, the sore throat, closed up throat, apnea, all things throat related seems to come back in full force.
Is it Babs? Bart? Or something yet to be discovered? Who knows.
What got me over the hump when nothing else would? Klonopins.
Please, if the doctors have not administered any -- do talk to them -- it is prescribed not only for anxiety/panic disorder but for seizure disorders as well -- and if you are experiencing what I sense you are -- it is like a form of an ongoing seizure.
It really sounds like the Flagyl kicked things into gear in a fierce way for you.
My LLMD used to say that it was rugged stuff and he was more prone to prescribing Diflucan because of the fall out that the Flagyl could often illicit in some of his patients.
Posts: 192 | From New England | Registered: May 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Canbravelyme asked, "How are your parents handling this?"
In Ema's past posts, she said that she did not go to the doctor when she was having severe abdominal pain, as her dad is not working, and there were no funds.
Although they did seek medical care for her, they are probably still under financial pressure, and we know that hospitals are very expensive.
[ 04-13-2013, 03:36 PM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
my parents are very supportive.. they are here with me. i am getting a lot worse... uncontrollable hand an head movements.
my lmdd didnt talk to the doctors here. they are still putting lyme as a possibility.. they are brining an infectious disease in. I know bad idea! but they are trying to find what they can. if my lmdd talked to them things were of been easier.
they diagnosed me with POTS so far.. but they are looking at Pots as a symptom of something, and that something else is stimulating it.
my cortisol was a little low.. so they are working on things with that. all my vitamins are normal.
hands are so weak they keep moving on their own.
i was on flagyl for a week and half prior to these symptoms. i am also peeing way too much and this been going for months. they did a urine test everythin is fine
can this be related to lyme?
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
As I said, it just so happens I've been researching POTS / Dysautonomia and the adrenals...
Cortisol is produced by the adrenals, and low cortisol, I believe, indicates that your adrenals are suppressed.
Aldosterone is a hormone linked to all this � if your Aldosterone is out of whack, it will cause frequent urination. My [limited] understanding is that aldosterone regulates the salt and water ratio in your bloodstream, which might be the link between the endocrine (hormone) system and POTS. Please ask them to check your aldosterone levels, which need to be done at the same time as your Renin levels. If you're showing low cortisol, they should also test you for Addison's disease. Please ask them if you could be experiencing an adrenal crisis.
I have been experiencing vomiting / diarrhea for nearly ten years almost daily. I have tried everything to stop it, and I'm pretty sure it's the POTS / Dysautonomia and adrenal connection.
In the meanwhile, POTS is frequently treated by increasing your salt intake � doctors prescribe salt pills for this. The improvements can be dramatic � since I started salt dosing four days ago, I have not thrown up. Today, when I was about to go into one of these vomiting episodes, I stumbled to the kitchen fridge and drank some of my salt / chicken soup mixture � it STOPPED dizziness / vomiting / diarrhea; I kid you not.
Salt also supports the adrenal glands.
Given your condition, if you haven't got a POTS specialist on board, you should get one in ASAP, as you've got that diagnosis. Considering you're showing low cortisol, I'd ask to see an endocrinologist as well.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
isn't sad that my lmdd is one of the best in orange county, and she didnt talk to the doctos here. there is a medical student who is insisting it's lyme disease and the professor is listening to him. he asked for my lmdd number and tried to call her, but I am feeling she doesnt want to talk to them.
this is a research hospital and they are willing to go for new findings, but I guess now I am stuck with an infecsious doctor. it's really difficult to type because my hands get very weak and my head starts shaking hard.
My biggest concern is this getting worse especially the head and hang shaking. it's hard to chew, when I chew my hea and hands start moving. kind of like a sezuire but i am will aware. this havent stopped for the past 3 days and it's only getting worse.
i am desperate for help, desperate for answers. i am in too much pain.. too tired but cant sleep. about 4 days ago I was able to walk and now i can't walk.
i am really scared guys... I want to be with my fiance but he is so far away from me. I want to get married. I just got accepted into the other round of nursin school. i was so happy that I got into nursing school with one of the highest grades. Now I cant even move and the pain is not stopping. muscles are way too weak.
I feel like i am getting tortured I don't know what to do
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Dear Ema, I am so sorry to hear all this. I pray that God brings the right answer into light. Thankfully you have that new medical student who is speaking up and being heard.
Very sad that your LLMD will not show up for you.
May God bless you and hold you close.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Perhaps someone here could email suggestions and links to the medical student, who could read the information and pass it on to the other doctors.
Although Lyme is the infection behind all this, there is still alot they can correct with minerals, vitamins, and hormones, to get your body into balance.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
My mother in law had strange twitches (head, face, soulders, etc.) last weekend and Xanax calmed it down. I forgot to mention this sooner. Maybe this would help.
She doesn't have Lyme, but other health conditions.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I am peeing way too much. they did a urine test and it was fine, now they are doing a 24 hour urine test.
they are susspecting something is up with my adrenal gland.
head movements are not any better. Also a lot of abnomine and pelvic pain.
I am going to keep updating. you guys support means so much to me. I feel here I can say my feelings, thoughts, and concerns freely and each one of you understands.
I really can't supress this enough. Thank you so much guys for everything.
keep me in your prayer.
I love you all.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Keep us updated. We're concerned about you. If they think its your adrenals, you really should see an endocrinologist. Please ask to see an endocrinologist, ASAP, if you haven't already...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ema,
I am sorry you are so sick. I am of course suspicious of parasites, especially since you are having abdominal and pelvic pain.
Ask them to test you for parasites even though testing isn't always accurate. Maybe they will pick something up.
Parasites can affect/infect every system in your body and can migrate to the head which they love. Google parasite symptoms and show it to the medical student who believes you.
Praying that they can help you.
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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they are susspecting something is up with my adrenal gland.
Yes, and other hormones as well! They will figure it out, Ema!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Was the Strep test you had a blood test? Not a culture of the throat. If not, you should be tested for strep in the blood.
Do you have someone with you?
I am in S. Ca if you want to send me a PM or talk, not that I have any solutions, but just for support.
Posts: 2232 | From USA | Registered: Aug 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
luvema, God is near to you. speak to Him.. this bacteria over comes one with every thing possible.. you are resisting to it.. relax, let it be. may you become calm with out meds and struggle to get staff to understand.. Flagyl is a horriffic event to some.. bring Peace around you - mind over matter - focas on a distraction, let God in. Keebler is a wealth of knowledge.. gather your self with the advice others offer and take command.. be strong - being collected and sure of one's self while in a hospital setting, gets attention to those in charge.. they will respect your needs as you show maturaity and sound thoughts, we are all pulling for you here... hope your neck becomes normal again and soon..
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