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
Posted by nonna05 (Member # 33557) on :
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
Posted by cozynana (Member # 34270) on :
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.
Posted by Tammy N. (Member # 26835) on :
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. Posted by Lymetoo (Member # 743) on :
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!!
Posted by poppy (Member # 5355) on :
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.
Posted by luvema (Member # 26650) on :
i stopped the flagyl two days ago now...
the head movments are not improving. i am scared i'll stay like this forever.
i don't know's happening and they cant figure it out
Posted by treeinatree (Member # 38613) on :
Do you already take cholestyramine?
Posted by luvema (Member # 26650) on :
i take it sometimes
Posted by treeinatree (Member # 38613) on :
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?
Posted by luvema (Member # 26650) on :
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
Posted by BoxerMom (Member # 25251) on :
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.
Thinking of you, BoxerMom
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by BoxerMom (Member # 25251) on :
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.
Keep us posted.
Posted by Keebler (Member # 12673) on :
- While infection(s) are certainly important to consider & address (perhaps in other ways, a more comprehensive approach)
. . . I'm just grabbing for what has helped me in an adjunct manner for similar experiences:
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 . . . . -
Posted by luvema (Member # 26650) on :
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
Posted by Tammy N. (Member # 26835) on :
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.
Posted by canbravelyme (Member # 9785) on :
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,
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by Carol in PA (Member # 5338) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
. . . 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. . . . -
Posted by Keebler (Member # 12673) on :
- 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). -
Posted by Keebler (Member # 12673) on :
- 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:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posted by luvema (Member # 26650) on :
ct scan is normal..
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?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by canbravelyme (Member # 9785) on :
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.
Posted by Lymetoo (Member # 743) on :
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?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Lymetoo (Member # 743) on :
Perhaps "overload" would have been a better choice of words. I apologize. I'm losing my vocabulary! Posted by Robin123 (Member # 9197) on :
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. -?
Posted by Lymetoo (Member # 743) on :
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
Posted by canbravelyme (Member # 9785) on :
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!
Posted by Robin123 (Member # 9197) on :
Hi there, Canbrave...
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.
Posted by Lymetoo (Member # 743) on :
I'd better keep my little mouth shut! Posted by Keebler (Member # 12673) on :
- She needs Bea Seibert there to light a fire under the doctors, for crying out loud. Bea would see that no stone went unturned.
Haven't seen Bea for a while, hope she is okay. -
Posted by luvema (Member # 26650) on :
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
Posted by luvema (Member # 26650) on :
carol I always had sore throat. it comes and goes. I had it before I started flagyl and while on it.
Posted by Lymetoo (Member # 743) on :
Is it any better since you arrived at the hospital?
Posted by canbravelyme (Member # 9785) on :
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 Posted by canbravelyme (Member # 9785) on :
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,
Posted by tick battler (Member # 21113) on :
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
Posted by Rumigirl (Member # 15091) on :
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.
Posted by Carol in PA (Member # 5338) on :
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.
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.
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by poppy (Member # 5355) on :
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.
Posted by luvema (Member # 26650) on :
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
Posted by luvema (Member # 26650) on :
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
Posted by luvema (Member # 26650) on :
and so far it's not any better.
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.
Posted by Lymetoo (Member # 743) on :
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??
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by canbravelyme (Member # 9785) on :
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
Posted by poppy (Member # 5355) on :
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.
Posted by docluddite (Member # 36032) on :
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.
Posted by poppy (Member # 5355) on :
Hey, good idea about benadryl.
Posted by robbiem (Member # 32092) on :
Emma
Sending you prayers for relief soon.
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.
Posted by Carol in PA (Member # 5338) on :
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 ]
Posted by luvema (Member # 26650) on :
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?
Posted by canbravelyme (Member # 9785) on :
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.
canbravelyme is correct about the aldoseterone. I hope they are checking on this.
I was also wondering if Klonipin would help.
Posted by Razzle (Member # 30398) on :
Regular blood tests for vitamins and minerals are often not reflective of tissue levels of those same things.
So for example, blood magnesium level may be fine, but cellular magnesium may be low.
The reason for this is, the body tries very, very hard to maintain certain levels of certain nutrients in the blood - homeostasis.
It will pull nutrients from "less important" parts of the body (e.g., minerals out of bones) to fuel the heart and brain, maintain pH balance, etc.
It is only when the imbalance gets severe that it shows up in a regular blood nutrient panel.
RBC nutrient testing, on the other hand, may be more revealing...but can still miss things.
And yes, Lyme can cause the symptoms you are experiencing...so can a major herx.
Hormones are also a possibility.
I had an episode of uncontrollable head & upper torso shaking that lasted 10 days (before Lyme dx). Neuro blew me off, ER blew me off.
Never did find out what the heck triggered this or caused it, but now that I know about Lyme, I strongly suspect Lyme is the culprit in my case.
Posted by Keebler (Member # 12673) on :
- PORPHYRIA should also be considered. It can cause this kind of reaction.
PORPHYRIA, a metabolic dysfunction of the liver, involves the liver and the blood - and can affect the entire body and brain function.
Reactions to Treatment: Endotoxins, cytokines, porphyria, etc. -
Posted by luvema (Member # 26650) on :
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
Posted by Lymetoo (Member # 743) on :
PRAYING FOR YOU!!! Posted by Tammy N. (Member # 26835) on :
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.
Posted by Carol in PA (Member # 5338) on :
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.
Posted by Tammy N. (Member # 26835) on :
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.
Posted by luvema (Member # 26650) on :
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.
Posted by canbravelyme (Member # 9785) on :
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...
Posted by glm1111 (Member # 16556) on :
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
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by luvema:
they are susspecting something is up with my adrenal gland.
Yes, and other hormones as well! They will figure it out, Ema! Posted by Haley (Member # 22008) on :
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.
Posted by payne (Member # 26248) on :
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..
[ 04-13-2013, 05:05 PM: Message edited by: payne ]
Posted by Rumigirl (Member # 15091) on :
I am so sorry that you are going through this!!
I have to say that under the circumstances it really is NOT good that your LLMD won't talk to your drs. Now, I understand why, but this is not good. Couldn't she call them with her caller number blocked? I know the hospital drs won't understand all of this, but geez, this is atrocious, given how much you need help.
Did you say that your LLMD didn't have a clue as to what was going on with you? If so, that also seems strange---even though she might not know for sure.
Several important details:
When I talked about the magnesium via IV push or drip, this has nothing to do with Lyme per se. And it IS used in hospitals for seizures, muscle spasms, heart problems, women in labor.
That said, probably not all hospitals know to do it, but it is not unusual anymore. That's why I suggested it, besides the fact that it could help enormously.
Blood tests for magnesium that are not the RBC magnesium test are useless. You can say to the drs, "I've heard that IV magnesium is often used for seizures,
muscle spasms, and heart problems. Could we try it?" There is no downside to a magnesium IV!! (And it should be done each day at least. Can be done a few times a day, if need be).
A urine test WILL NOT tell them about your aldosterone level or your electrolyte levels, which are the important
thing here. Those are blood tests; although electrolyte levels are difficult to test for accurately anyway. Again, giving electrolytes have no downside.
And people are right, for any kind of seizure, or for myoclonus, which is what this sounds like, Klonopin or something in that family can help a lot. Can be given IV, too, for faster relief.
IV glutathione would be great, but I sincerely doubt that you will get that in a hospital, unless your LLMD spoke to them about it.
Posted by luvema (Member # 26650) on :
i been so sleep depraived cant sleep at all because of sever head pressure. they gave me meds and it didnt work. now They are going to give me vicodin.
at this point i'll take anything. I hate taking pain killers but I can take this!!
plus there is a pt in the same room as me that keeps screaming.. which makes it even harder to sleep.
I swear I am going crazy. screaming woman, back and pelvic pain, headache, sever throbbing head pressure.
Posted by luvema (Member # 26650) on :
sorry this msg was suppose to go on the post
Posted by luvema (Member # 26650) on :
ear plugs.. ear phones nothing helping with screaming woman.
Posted by sk8ter (Member # 8671) on :
Ema i pmed you ..pls look
Posted by luvema (Member # 26650) on :
vicodin relaxed my muscles a little bit.. but pain is still there and cant sleep. too frustrated. I hate being at the hospital
Posted by canbravelyme (Member # 9785) on :
Ema � from what I understand, Dysautonomia / POTS can cause ALL the symptoms you're experiencing, and I think an adrenal crisis could as well. This is why I keep asking whether you've seen an a) POTS specialist and b) an endocrinologist. Have you? That said, the body is very complex, and who knows that else it might be. They're not treating you for POTS, right? I can imagine they're apprehensive about treating you for something until they're 100% sure what's going on, because they don't want to make things worse. I wouldnt press for treatment until they have a definitive diagnosis, either. Glad the Vicodin helped a little. Hopefully the urine test will provide some answers.
Hope they find some answers soon, and you start feeling better!
Posted by dbpei (Member # 33574) on :
So sorry you have to be going through this, Luvema. I just don't know what I would do in your situation. It must be so incredibly difficult. I hope your symptoms will subside and you will be able to go home soon.
Sending prayers and hugs your way. Posted by poppy (Member # 5355) on :
I don't believe we are getting thru.
Posted by Lymetoo (Member # 743) on :
I just pm ema on a condition that many POTS people are now being tested for...it is called CONGENITAL ADRENAL HYPERPLASKA LATE ONSET..my endo caught it from my androgen hormone being very high
BUT THE RARER HORMONES MUST BE TESTED BEFORE 8 AM....these are 11- DESOXYCORTISOL, OHP-PROGESTERONE, 17OHP- PREGNENOLONE, ...Free Testosterone, Androstendione, DHEA-S, ....
If the androgens are high and either the 17 OH progesterone or the 17 OH pregnenolone are high then genetic testkng should be done...ATHENA DIAGNKSTICS does the tests...# 879...they are owned by Quest so insurance should cover it....
the POTS community s just starting this testing.. i hope they check for this..she could be having a adrenal crash which can be life threatening and most hospitals don't know about this except Cedars..
Dr. Run Yu treats adults for it..All newborns are tested for this but adults late onset are under diagnosed..my endo in laguna hills also diagnosed this...it isnt always adrenal fatige..it can be an actual gentic defect..hydrocortisone is the preferred treatment dived in 3 doses...
the dr will have to know the dosage..they can look it up on the MAYO clinic website...i hope she asks them this
**edited for easier reading...please edit posts with large blocks of print**
[ 04-13-2013, 02:57 PM: Message edited by: Lymetoo ]
Posted by canbravelyme (Member # 9785) on :
This is why I keep harping on Ema seeing an endocrinologist. I didn't want to get into the fact that adrenal crisis can be life-threatening, because I didn't want to stress her out further, but it's something that I'm worrying about for myself right now;
esp since I've begun salt supplementation, and I've been able to mitigate hideous vomiting episodes that had been diagnosed as seizures at one point (dysautonomia can cause seizures).
Anyway, I'm waiting for my test results to come in, and to have further testing. I am also an Ashkanazi Jew, and it turns out that there is a genetic form of Dysautonomia -- Familial Dysautonomia --
that is only found in Ashkanazi Jews. I'm pretty sure it shows up when one is a child, but I need to make sure I don't have it. I will copy and paste what you've written here and send it to my doctor.
BTW, I'd noticed that in the last six months I'm putting on muscle without doing anything to warrant it -- could this be another symptom?
If you're in Orange County, maybe you're near Ema? If so, maybe you could hook Ema up with your endo?
**EDITED .. please do not write with large blocks of print**
[ 04-13-2013, 02:59 PM: Message edited by: Lymetoo ]
Posted by luvema (Member # 26650) on :
guys I've seen an endcronlogist before.. my dhea and another hormone was high.. she checked my adrenals with some tests they were fine. then I was diagnoised with pcos.
here they are doing it differently. they checked the cirtisol in the morning. gave me an injection of cirtisol and then they got blood twice after that.
We'll see if it'll come back normal or not.
i am putting up with the pain, it's just the non stop head shaking that is driving me crazy
Posted by canbravelyme (Member # 9785) on :
PCOS - not POTS -- right. Sorry about that.
If you were diagnosed with PCOS, you really should ask to be tested for the condition sk8ter mentioned; I've been reading about it for my own concerns, and learned that people having previously been diagnosed with PCOS turned out to have Congenital Adrenal Hyperplasia: http://pcos.about.com/od/normalmenstrualcycle/a/cah.htm
Are you sure they injected you with cortisol? Sounds like they've given you an, "ACTH STIM: The ACTH Stimulation test, also called the Cosyntropin test, measures the ability of your adrenals to be stimulated by the ACTH, a pituitary hormone, and is used to diagnose Addison�s or Cushings disease, as well as hypopituitary. Usually done in an out-patient setting and takes only a few hours. A synthetic ACTH is injected into your arm and the response of your plasma cortisol levels are measured." ( http://www.stopthethyroidmadness.com/lab-values/ )
Are you feeling any better? Hope you feel better soon!
Posted by luvema (Member # 26650) on :
i don't know!!! i cant tell them what to do or what tests to do. i am too tired, too much pain.
have any of you experince head movements and hand movements like this before? it concerns me because it's a new symptoms. and I am not sure if it's herx to flagyl....
i think it's 3rd or 4rth day and it's not any better. when i am relaxed it's starts jerking from and back and very fast from side to side.
and when i am laying down I have bad pressure.
Posted by Carol in PA (Member # 5338) on :
Canbravelyme said, "I am also an Ashkanazi Jew, and it turns out that there is a genetic form of Dysautonomia -- Familial Dysautonomia -- that is only found in Ashkanazi Jews."
Ema is Arab, from Palestine. In one of her earlier posts, she said she was diagnosed with a blood disorder, but I can't remember the name.
I wish she'd talk to the med student/intern about letting one of us email him some info.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by luvema:
i don't know!!! i cant tell them what to do or what tests to do. i am too tired, too much pain.
- Show this thread to your parents!
Posted by canbravelyme (Member # 9785) on :
Carol, I'm not sure whether I'm referring to the same genetic issue sk8ter is, but if so:
"Certain ethnic groups are at higher risk for NCAH. Ashkenazi Jews, Italians and Hispanics have higher rates of NCAH than the general population."
So, that website (link in my previous post) says it's various groups that have a greater likelihood; if Ema is Arab from Palestine, she's not in a high-risk group, but it doesn't mean she couldn't have the disorder.
Instead of getting the med/intern to speak with one of us, I'm with Tu -- maybe if one of her parents read this thread it could be of some use?
It sounds to me like the doctors are doing the right tests, and she's going to get through this, despite her considerable discomfort right now. As she so rightly points out, it's always tricky to ask for this or that test when you're not vulnerable, let alone when you're as vulnerable as Ema is right now.
Sending my best wishes,
Posted by luvema (Member # 26650) on :
thank you canbravelyme
Posted by Robin123 (Member # 9197) on :
Sorry for what you're going through! Can you get any more creative with your comfort level? For example, if your head is jerking, would it help to stabilize it more in some way? Tie it down, put blocks around it, whatever might be a simple way to prevent the physical movement. -?
Posted by Judie (Member # 38323) on :
"have any of you experince head movements "
I had that happen when I was given meds that I was allergic to. It's an unusual reaction for most folks, but it does happen (and we're not like most folks).
My body just can't process some meds correctly and it effects my nervous system.
Posted by Carol in PA (Member # 5338) on :
Dilantin (Phenytoin) can stop seizures and spasms, but the doctors should know that.
Magnesium is given intravenously to stop seizures and muscle spasms.
I am concerned that when Ema is too exhausted to post here, that we'll lose all contact with her. When a person doesn't get any sleep, they eventually start to hallucinate.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by canbravelyme:
"Certain ethnic groups are at higher risk for NCAH. Ashkenazi Jews, Italians and Hispanics have higher rates of NCAH than the general population."
So, that website (link in my previous post) says it's various groups that have a greater likelihood;
-- And we don't always know what is in our family lines from many generations back. Just a thought!
Posted by OtterJ (Member # 30701) on :
luvema, let us know how your cortisol/ACTH test comes out, or have one of your family email us. I
am sending good thoughts and prayers your way. Inflammation can cause that feeling of head
pressure. I hope they take this seriously. The only relief I got from a bout of this last year
was to take steroids, which every one here on the boards will jump all over, but I don't make my
own cortisol and the only relief I felt was when I took my replacement cortisol in the morning. I
knew then it was inflammation causing my awful headaches.
Posted by Judie (Member # 38323) on :
Is there any way your parents can step in and DEMAND the screaming patient be moved to another room so you can get your rest (or have you moved)?
That's horrible that the hospital put you in a room with someone like that when you need rest so badly.
The other thing that effects my nervous system is VOCs. I have MCS (multiple chemical sensitivity) and my body just can't process some stuff.
This combined with lack of sleep causes shaking.
Have you been around any new construction or fumes over the last couple weeks?
If your androgen hormones were high and your adrenals are crashing IT IS NOT PCOS...it is CONGENITAL ADRENAL HYPERPLASIA !!!! i have given you the tests for them to test at 8 am ...please get them done..It is not unusual for endos to miss this...go to Caresfoundation.org....my endo in Laguna Hills picked it up and there is a beginning genetic testing along with other blood tests ..this may be a reason for POTS/Dysautomomia... there is NO expert at UCI but they can look it up on the Mayo Clinic site under congenital adrenal hyperplasia....the treatment is fairly easy once started. I hope with the stim ACTH test that they tested the hormones i listed for you ..that will designate which mutation you have and treatment.
Posted by Judie (Member # 38323) on :
Another thing to keep in mind is doctors who deal with chronic lyme, MCS, and a host of other illnesses that the mainstream don't understand AVOID talking to mainstream doctors and hospitals.
I've learned this over the years the hard way when I tried to get both sides talking. I assume they don't want to have to take on the task of re-educating the ignorant.
Most of the time when I see the lyme doc or others, it states in their intake forms that they don't have hospital privileges. I actually had one that wouldn't treat me unless I got someone else to be my PCP liaison should something happen and I wound up in the hospital.
It's a sad fact of medicine right now, and I'm sorry you're dealing with people who aren't putting their knowledge together.
Posted by Haley (Member # 22008) on :
Have they considered doing a spinal tap? If you are having swelling in the brain you may have meningitis.
Posted by Messa (Member # 38065) on :
Praying for you ema
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Judie:
Is there any way your parents can step in and DEMAND the screaming patient be moved to another room so you can get your rest (or have you moved)?
- Amen!
Posted by luvema (Member # 26650) on :
no swelling in the brain.. they did a ct.. my brain is fine. no swelling no lesions
Posted by luvema (Member # 26650) on :
adrenal test came fine.. they checked twice. my adrenal's are working fine...
thise are the last updates.
I apperciate the suggestions guys, but please don't try to diagnoise me.
someone asked if I been around new areas or fumes. I got into nursing school, and the first few days we were sitting down in a very old building. That's when I noticed my symptoms get worse. I am sensetive to things, envirnoments and stuff, and I am suspecting something in that building set things up. I feel worse in certain areas than others. it's weird
Posted by luvema (Member # 26650) on :
my dad is quite, and he is just saying let the doctors test for everything and try to figure it out.
my mom her english is not strong, she doesnt know or say anything. she just keeps praying on me and stuff.
Posted by Carol in PA (Member # 5338) on :
Ema, I remember that you said a while back that you got a new blanket, and that you had a problem whenever you slept with it. Your heart? I can't remember.
Did the problem get better when you stopped using that blanket?
Posted by Carol in PA (Member # 5338) on :
Also, I remember that one of your lab tests showed an elevated level of calcium, which is a symptom of hyperparathyoidism.
Don�t know if the info below is of any help. Wasn�t sure if I should post it or not because who am I to know this stuff then I thought what if it might help-- so here goes...
luvema, First, please know that you are in my prayers.
Second, I am not a doctor - NOT EVEN CLOSE! (ha)-but I was researching for you and I found this:
Robbiem- mention Myclonus earlier in this thread. The quote below gives more info on this and it sounds similar to what you are experiencing. It even mentions LYME as a cause.
"Myoclonus � A twitching or intermittent spasm of a muscle or group of muscles. Myoclonus is classified into several major types and many subcategories.
The most common type is cortical myoclonus, which arises from an area of the brain known as the sensorimotor cortex. Jerky movements usually have a regular rhythm and may be limited to one muscle or muscle group (focal) or several different muscle groups (multifocal). They may occur without an obvious cause or be a result of many diseases. Some of the diseases associated with myoclonus are Celiac disease, Angelman syndrome,Huntington's disease, Rett syndrome, Creutzfeldt-Jakob disease and Alzheimer's disease.
Subcortical myoclonus usually affects many muscle groups (generalized) and may be the result of abnormally low levels of oxygen in the brain (hypoxia) or a metabolic process, such as kidney or liver failure.
Spinal myoclonus usually is caused by a focal spinal lesion, such as multiple sclerosis, syringomyelia, trauma, ischemic myelopathy or an infection such as herpes zoster, Lyme disease, E. coli, or HIV. The jerking often lasts longer and is more variable than in cortical or subcortical myoclonus, and continues during sleep.
The most common type of peripheral myoclonus is hemifacial spasm, which may occur for no underlying reason or be caused by compression of the facial nerve. Movements persist during sleep and may last for only a few days or for as long as a few months.
The exact type of myoclonus is delineated further by the parts of the body affected and by the underlying causes.
Myoclonus is treated through prescribing medications that may help reduce symptoms. In some cases, effective results are achieved by combining multiple drugs. Some of the medications prescribed are barbiturates, phenytoin, primidone,sodium valproate and the tranquilizer clonazepam. All of these medications have potential side effects, so it is very important for patients to work closely with their doctor on medication management."
Sorry, I tried to break up the quote because it was so long and mushed together making it hard to read.
Moderators if this info not thats ok to post please just delete.
Again, luvama, my thoughts and prayers are with you! Please know I was just trying to be helpful. Best -S
Posted by Judie (Member # 38323) on :
"someone asked if I been around new areas or fumes. I got into nursing school, and the first few days we were sitting down in a very old building. "
That was me who asked about that.
Yes, old buildings can trigger these kinds of problems. I got poisoned in a building several years ago (before lyme). It took 6 months for a doc doing research to figure it out. During that time I was wasting away and had been in and out of the hospital.
There's only so much a body can process when you're sick. The flagyl and the old building may have been the tipping point.
I'm so sorry you're so fragile right now.
I've learned that I have to be my own expert/advocate in some things. Doctors only know so much and they ONLY know what they specialize in (unless they are the rare kind that actually continue researching and learning).
There are some environmental illness doctors in southern California too. Let me know if you need some resources.
Considering your family situation, you'll probably have to be your own advocate for a lot of things, including medical care.
This is going to be a puzzle and well-intentioned people are going to try to help, so you're going to be bombarded with advice (both helpful and not so helpful).
Hang in there! Something will make sense (if not from the doctors, than from your own reasoning abilities).
If the doctors can't put the puzzle together, don't discount your own brain!
I can tell by your posts you're intelligent and reasonable.
Posted by momindeep (Member # 7618) on :
I will pray for you ema...that the doctors can put the pieces together. I will pray for your parents too...that the Lord will take the fear away and replace it with peace and knowing.
Posted by tahoma94 (Member # 18866) on :
Ema,
The old building you mentioned is what I was suspecting. I have had SEVERE heart rate increase when exposed to something in a building that was "new" to me (but old/moldy, etc). This is how I became very ill to begin with, but have experienced this several times since then and I recognize it immediately.
My heart rate was not as severe as yours, but was certainly 130 at rest. Took a couple of weeks to settle.
All the best to you.
Posted by Carol in PA (Member # 5338) on :
Ema, what is your heart rate now? Are they still giving you pain meds? Is your head pain or abdominal pain any better?
When I was in the hospital with my first baby, the patient they put in my room was very nice, but I could NOT get any sleep with someone else in the room.
When I was in the hospital for my second birth, I told them I would sign out if they put another patient in my room. The nurse acted shocked when I said that, but I was serious.
Evan from the chat room asked me to tell you hi, and I'm going to pm you with his addy.
Posted by Robin123 (Member # 9197) on :
That's interesting that Judie reported shaking with MCS. I didn't get that with mine, but fyi, I am recovering from MCS by sweating out in a far infrared sauna - am able to handle smells and touching more - so that's a possible remedy in the future to try for the MCS sensitivity.
In the meantime, it would be nice if either you or the screaming patient were moved into separate rooms so you could sleep. Have you asked them to do something about it?
I use Max's earplugs, myself. Maybe someone could get you some earplugs?
Posted by luvema (Member # 26650) on :
Do you guys think the head pressure / head shaking will go away? I am scared I am going to be like this on my wedding day lol.
what made it worse not only sitting in that old building but also looking down an up... writing notes, and looking up at the professor and powerpoint. That started hurting my head, and I was getting symptoms of all kinds.
I am an active person and staying in bed drives me crazy. So, yestrday when my sister came she took me for a little walk around thr hospital. My knees were super weak, heart rate around 180, and dizzy. but I sat down on the grounf and tried to stretch and do some yoga poses. I am going to do that every time I can. Sitting in a hospital bed is only going to make me worse.
I did ask for the tests sk8tr mentioned. They are telling me it's very unlikely, and my adrenals are functioning well. i'll try to ask then again.
Carol, for the high calcium I got that checked out, and it wasn't what you mentioned. The doctor checked me for that.
And yeah, the blanket I had to get rid of it. I couldn't sleep from it and it caused me palpations
Posted by canbravelyme (Member # 9785) on :
"The acth test is usually the final say in whether you have adrenal insufficiency, but most docs are looking for just Addison�s disease with the stim test.
If the test does not show Addison�s (for example, in true Addison�s, the stim may start at 3 and rise to 4 or 6 rising to 8), then they see the stim as showing the adrenals are working.
They fail to recognize any degree of adrenal insufficiency between Addison�s and healthy adrenal function. In others words, these docs see the adrenals as working or not working with no in between.
I�ve seen reported docs only looking at how the stim doubled or more, not taking into consideration that the base number was very low and do not consider that the test reflects that their acth signal isn�t working."
You might consider asking the doctors to fax the results of the adrenal tests to your LLMD, and / or sk8ters endocrinologist for a second opinion?
Best,
[ 04-14-2013, 05:28 PM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- Adrenal complexities are important to reconsider.
In additon, PORPHYRIA can do all this, too, or in addition to all else that is going on.
Porphyria can cause all kinds of neurological symptoms & damage. All kinds of myoclonus, etc. And, if present and not addressed, it can be fatal without proper care.
That environment (old building "dust" or "mold" etc. (and even a blanket with it's chemical finishes) has intensified symptoms points to the need to consider porphyria. It can also explain why certian medicines do not help (or can hurt).
The VESTIBULAR symptoms you describe are very common with lyme, with adrenal dysfunction, liver stress - and porphyria.
You might ask for a vestibular therapist to teach you some safety methods, such as where to set your sights when walking, etc.
I've had all you describe go on and these are things that helped, but it took years to sort out and a lot of damage occured before I got some answers.
Yes, lyme & other TBD can be at the root of all this. Yet, lyme & co. can also cause all this other stuff.
Nothing is more important, though, than the ADRENAL and PORPHRYIA investigation. When those are at their worst, it can be life-threatening.
Tests can be elusive. So, even if not sure, support methods (for adrenals and liver) can't hurt and can help so much to cover some bases.
Topic: what type of M.D. tests for PORPHYRIA -
Posted by Ellen101 (Member # 35432) on :
quote:Originally posted by luvema: 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
Yes, I think it is disgraceful that your Lyme doctor has not spoken with them. For those of you that think that this type of behavior is OK, or justified, I'm puzzled. If your child was hospitalized and had been under the care of his pediatrician would it be OK for the pediatrician to ignore phone calls? Since when has it become acceptable for LLMD's and LLNP's to be irresponsible??? Why are they not held to the same standards that we uphold our otherphysicians to?
I'm sorry you are having such a rough time and I hope the doctors treating you will find some answers.
Posted by Keebler (Member # 12673) on :
- It's the politics and the attack on LLMDs that has caused this. LLMDs often have no other choice but to remain separate. When they step out of their own office, they can be accused of all kinds of things and loose their licenses, even in states that offer some kinds of protection for chronic treatment.
Lyme treatment is seen as againgt all the rules. LLMDs put themselves on the line to even just treat on their own territory. When they step across a line, their career can be be over.
Sad but true. -
Posted by nonna05 (Member # 33557) on :
Poppy !!!! You said "you don't believe we are Getting thru".......how did you mean this?
Lord ,,to have to edit getting,,,
[ 04-16-2013, 01:31 PM: Message edited by: nonna05 ]
Posted by nonna05 (Member # 33557) on :
Keebler,,why can't they just do mag and taurine IV/IM by themselves?/
What happens???
Is this only IM or tablet etc, also? Are you talking about Glutathion in general or different supp. that causes problem? Thank you, Nonna
Posted by Keebler (Member # 12673) on :
- Nonna, it's all about balance of minerals and electrolytes - but also should be individualized for the particular patient's requirements.
And also that magnesium can be a bit caustic if other things are not added to complement, especially in a shot. -
Posted by Razzle (Member # 30398) on :
Yes, I had the shaking head & torso while relaxed. If I used the muscles, the shaking stopped.
ER and Neurologist both blew me off, so never ran any tests that showed anything abnormal (but they only did the most basic of tests, no MRI or anything more than just basic CBC/Blood Chemistry, and simple neuro exam).
So I never found out what caused my shaking.
It stopped on its own, I couldn't do anything for it. But I still have a tendency to become shaky for a few minutes when I'm really tired, or have gone through a time of intense stress.
I agree with the others when they mention dysautonomia, Porphyria, mold toxicity, adrenal issues must be tested for...
Posted by Robin123 (Member # 9197) on :
Re your getting into nursing school, congrats on that! Did you know that Mandy, the main woman featured in "Under Our Skin" who was so ill did get better, went to nursing school and I hear is now a nurse!
So, hold onto your intentions - when this gets figured out and you get stabilized, with more management, down the line you will be able to make this happen again.
Posted by Judie (Member # 38323) on :
"what made it worse not only sitting in that old building but also looking down an up... writing notes, and looking up at the professor and powerpoint. That started hurting my head, and I was getting symptoms of all kinds."
It sounds like that building really sparked some of this.
I get shaking with my MCS, it can effect the central nervous system.
Here's a paper by Sheila Bastien. She specifically talks about buildings and people's concentration and test scores changing because of environmental factors:
Here's her advice on how to deal with the classroom (from the article above)
"It almost always seems to affect the central nervous system, and the results that I am primarily interested in are the effects that it has on memory, concentration and learning.
These are all dramatically impaired when a person is exposed.
This is very important in terms of accommodation in a classroom or work situation.
If exposed, a person may not be able to process what is said, or store the information processed in a lecture, for example.
A child may not be able to learn.
It may be possible for them to sit in the corner of a classroom, wearing a charcoal filter mask, near an open door.
It may be useful to have whole room filters. It may be possible to move the class.
Certain classes are very difficult, such as chemistry classes, because a charcoal filter cannot get rid of all the chemicals.
These persons/patients seem to take more time to do things than other people do; and giving them more time on examinations would be one kind of accommodation.
Letting them sit as far away from other people as possible, near open windows, is also helpful.
Videotaping a class may be an option.
Two young men (twins), now residing in Arizona, were having problems in high school, could not pass.
They were allowed to take the GED examination outdoors and were in the 99th percentile when tested in a clean environment."
Posted by Keebler (Member # 12673) on :
- Sheila Bastien's work is brilliant. She's in California. Not a LLMD (a PhD, I think) yet might still be someone your doctors would do very well consulting.
She is expert in how many chronic stealth infections and injury affects patients. And her work also relates to those with lyme. She's done a great deal to shine light for those in the CFS mix.
To find her, just Google. -
Posted by sk8ter (Member # 8671) on :
Our llmds are usually not on hospital staffs for good reason...they still are targets..they cannot get into arguements with ER doctors who know nothing about any of this..or else. we lose them...many are demanding that patients have a pcp or gp that they can work with...i dont blame them one bit...
Posted by luvema (Member # 26650) on :
all my tests came back normal.
I think I am just going home with pots diagnosis.
Posted by Lymetoo (Member # 743) on :
OH my. Maybe the shaking will stop soon. It could still be from the flagyl. (?)
Detox all you can! (and get some Vitamin B's in you)
Posted by canbravelyme (Member # 9785) on :
Are they going to treat you for POTS, since they've diagnosed you with it...?
Posted by beaches (Member # 38251) on :
Ema, do you have an aunt, sister or friend who can advocate on your behalf since your parents apparently cannot?
And FWIW, I find it rather disgraceful that your LLMD has apparently excused him/herself from your medical crisis.
This is not at all acceptable.
For my two cents, I'm not paying these LLMDs astronomical amounts of money out-of-pocket and buying their supplements only to have them abandon me during a serious medical crisis. That just isn't right or justifiable in any way, shape or form. In fact it's unethical.
I hope you get answers. Best of luck.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler:
It's the politics and the attack on LLMDs that has caused this. LLMDs often have no other choice but to remain separate. When they step out of their own office, they can be accused of all kinds of things and loose their licenses, even in states that offer some kinds of protection for chronic treatment.
Lyme treatment is seen as againgt all the rules. LLMDs put themselves on the line to even just treat on their own territory. When they step across a line, their career can be be over.
Sad but true. -
-
Posted by sk8ter (Member # 8671) on :
Our llmds are usually not on hospital staffs for good reason...they still are targets..they cannot get into arguements with ER doctors who know nothing about any of this..or else. we lose them...many are demanding that patients have a pcp or gp that they can work with...i dont blame them one bit...
Posted by Ellen101 (Member # 35432) on :
quote:Originally posted by beaches: Ema, do you have an aunt, sister or friend who can advocate on your behalf since your parents apparently cannot?
And FWIW, I find it rather disgraceful that your LLMD has apparently excused him/herself from your medical crisis.
This is not at all acceptable.
For my two cents, I'm not paying these LLMDs astronomical amounts of money out-of-pocket and buying their supplements only to have them abandon me during a serious medical crisis. That just isn't right or justifiable in any way, shape or form. In fact it's unethical.
I hope you get answers. Best of luck.
I agree 100%. Totally unethical.
Posted by beaches (Member # 38251) on :
thx Ellen, topic for another thread, for sure. I could go on and on about this, but won't b/c the main issue is Ema and her situation.
And speaking of which...Ema, can anyone advocate for you???
Posted by luvema (Member # 26650) on :
this lmdd if i want to ask her a question on the phone... she wants money. She knows how I cant afford anything. I am a broke.
here in the hospital they told me it's pots, but they can't figure out why because all the tests are normal. They told me they are going to try to call my lmdd again tomorrow to try and understand my sitution a little better.
Posted by beaches (Member # 38251) on :
Ema, do you have an aunt, sister or friend who can advocate on your behalf?
Can anyone of them help defray the cost of your LLMD speaking with the attending doc at the hospital?
Posted by Robin123 (Member # 9197) on :
She wants money...come on - you're in medical crisis still. How many of us give our time here for free to help others - typing, calling? Just about all of us. I'm not impressed with the greediness of this doctor. She could afford to talk with you briefly.
Posted by beaches (Member # 38251) on :
Yes, Robin absolutely. I am not impressed with this so-called LLMD either but I would hope someone Ema knows could step up here to help her.
Posted by canbravelyme (Member # 9785) on :
OK -- putting aside the unfairness of people for a moment, Ema -- you have a POTS diagnosis. You're having hideous symptoms; does it really matter right now WHY you've got POTS? Can they treat the POTS and ask questions later, or are they afraid to treat the POTS, for fear of things getting worse?
Posted by Judie (Member # 38323) on :
Here's a whole list on what causes POTS. Lyme and co-infections are list along with many other things.
I believe this is why the hospital wants to find the cause (treat the cause, treat the POTS).
Luvema, saying a prayer for you. Had the head nodding and shaking, along with the hand and fingers trembling pretty severely in November. Came with a bad flare of Lyme.
Over time it lessened, but even now if I try to do too much, get a bit excited, or stand n one spot too long, it comes back just a bit.
I couldn't read, write, talk well/fluently, hold items, etc for a few weeks. Again, as abx were given, Bystolic in a low dose (my doc uses if for POTS), and I began to recognize the onset of the head movemenfs and hand flutters, I could deal with it better.
Have you everhad migraines? When there is a big shift inthe barametric pressure, I've also noticed a migraine will come on.
May the docs find the underlying cause and may you get some good rest wwith relief from the pain and head mvements. I'm sorry that you're going through this.
It will get better.
Posted by Carol in PA (Member # 5338) on :
I have a suggestion to help the roommate who keeps on making noise.
Give her some music with headphones. (And more pain meds.)
Then maybe Ema can get some sleep.
Posted by canbravelyme (Member # 9785) on :
Sure, they want to know why the POTS; the point is there is treatment for POTS, and I don't see the virtue in Ema suffering on principle when she could have treatment for her symptoms, unless there's a damn good reason _not_ to treat the POTS...?
Posted by luvema (Member # 26650) on :
Thanks again everyone!
You guys make me feel a lot better. Just the comfort of someone understanding is great.
I knew I had POTS for years. I was on beta blockers for maybe a year or so before.
I think they are going to put me on beta blokers again.
They are going to see if my lmdd would talk to them today. I hope she does.
A medical student here is convinced lyme can be the cause.
They did a lyme test and waiting for the results.. but then again, well all know how un accurate those tests are.
I have a question...
is the lyme culture test accurate? I remember my lmdd telling me it's 97% accurate. Is that true?
Posted by payne (Member # 26248) on :
Listen to your body.. its hard to get men to do what we need done... God, watch over you and guide medical staff to treat you for lYME.. I shall not want as The Lord, knows my needs.
Posted by OtterJ (Member # 30701) on :
The Western Blot is the most accurate, but they need to repeat the ELISA and the Western blot
together. There are many reasons why the test might appear negative when you have an active
infection. The Elisa and Western Blot together constitute a 'CDC positive' test. My Elisa was
indeterminate (not negative) and the Western Blot had enough bands one of which was 41 Kda. Both
tests test blood, but lyme travels about on nerve pathways. Lyme can travel to the ears where the
baroreceptors are for the body that regulate blood pressure and that can impact the body's
blood pressure. If the test is the improved ELISA, it is not improved and the further away
from initial infection, the less reliable it is.I will look for the case site for this and hyperlink it .
Posted by canbravelyme (Member # 9785) on :
The ELISA is about 60% accurate. So why bother with it?
Posted by debilyn (Member # 35753) on :
Just to note for the record: Ema's LLMD outed herself a few months ago on national television. She used her real name and talked about her job as an LLMD.
So I don't see what the big deal is now, why the LLMD won't answer the phone when the hospital docs want to consult about a patient.
Plus it is California where LLMDs are better protected, at least that is my understanding.
I just don't get this LLMD; she doesn't need hospital privileges to honor a consultation request from other doctors.
It is all crazy.
Ema, I am praying for you. You are going to make it through this .
Posted by OtterJ (Member # 30701) on :
I hope you're right, canbrave, since I was CDC positive, an infectious disease doc did the Elisa C6 test several years after my bite and of course it was negative. Just saying, if the docs are interested in actually treating ema or if they are just interested in perpetuating the IDSA myths about lyme.... Ema , go for the Burrascano test. HAVE A BETTER DAY THAN YESTERDAY! Prayers to you and your family.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by OtterJ: [QB] The Western Blot is the most accurate, but they need to repeat the ELISA and the Western blot
together. There are many reasons why the test might appear negative when you have an active
infection. The Elisa and Western Blot together constitute a 'CDC positive' test. My Elisa was
indeterminate (not negative) and the Western Blot had enough bands one of which was 41 Kda. Both
tests test blood, but lyme travels about on nerve pathways. Lyme can travel to the ears where the
baroreceptors are for the body that regulate blood pressure and that can impact the body's
blood pressure. If the test is the improved ELISA, it is not improved and the further away
from initial infection, the less reliable it is.I will look for the case site for this and hyperlink it .
Then why are you recommending it??
Posted by Keebler (Member # 12673) on :
- If one had been diagnosed with lyme, they do not need repeat testing. Repeat testing for lyme is not necessary. If diagnosed and not treated adequately or not yet reached remission, it's still lyme.
Now, there may well be other things, especially other TBD to consider but lyme is not just magically going to go away because we get frustrated that it's taking so long.
There is no test that will prove lyme is cleared. That comes from a good strong remission.
Still, it's usually never JUST lyme. And every good LLMD knows that.
Now, after several years of adequate treatment, the ADVANCED LABS CULTURE test may be of help to sort out remaining symptoms but, even then, it cannot rule out lyme.
As to why the LLMD in this case has not been involved in the hospital care, there are many reasons for that and things that we just can't know.
It's a sad situation, of course, but there is much that we just can't know about this particular situation so it's best for all to hold judgement - even if California has certain laws, some LLMDs have been harassed. It's not all the clear cut.
There may be others reasons that we also do not know about.
For those with a LLMD or LL ND, it's good to have a conversation about the scope of their practice for such times. In advance. -
Posted by Judie (Member # 38323) on :
As for Lyme testing, you better show the hospital (or that med student) the bill that was passed in Virginia.
"The groundbreaking law requires patients to be notified that a negative Lyme test doesn't necessarily mean they don't have Lyme disease. "
"Still, it's usually never JUST lyme. And every good LLMD knows that."
I agree. It's never JUST Lyme. I tested positive for 11 co-infections & treatment plans changed accordingly.
At Stanford hospital, they have a chronic fatigue specialist. Here's the lab requisition that they use for patients (click on "fill online" to see it):
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here -
Posted by Robin123 (Member # 9197) on :
Just be careful around the test results. If what they're doing comes back positive, fine. But if it comes back negative, they need to know a negative test result does not rule out Lyme. Including the Advanced Lab one in PA - a negative result could mean there were no bacteria in the sample.
When I had a positive Western blot, a rheum sent out for an ELISA, which came back negative, so then he said good news, you're negative, and I let him have it and then went out and educated his staff! I was newly on clindamycin and had no more pain after 25 years of fibro!
You could keep talking with the medical student who thinks you have Lyme, just to keep educating him. He sounds like he's open to learning.
Last thing - I said above that the doctor should be talking with the hospital, but it's true - we really don't know the reason why the doctor hasn't talked with them. Could be political/legal.
Posted by Carol in PA (Member # 5338) on :
Ema, please try to get contact info for that med student.
You may need it in the future.
Posted by OtterJ (Member # 30701) on :
My thoughts were if it is a Burrascano test, it may be better than anything that is out there. I
agree, it is never just lyme, there are too many co-infections and parasites that can be added to
the infectious soup. Docs never listen to their patients. We all remember fictional doctor House
saying 'all patients lie...." and it is as if the medical establishment is taking this as fact.
Maybe this adversarial role isn't new, but if there is an objective test out there that can
quiet the questioning mind of the physician who doesn't believe their patients or patient
symptoms, then do the test. Having to second guess docs and insurance companies while you are
seriously ill AND advocate for yourself is too much.
Posted by Lymetoo (Member # 743) on :
It should be referred to as the Advanced Lab Culture Test unless we are talking about 2 different tests.
Posted by Keebler (Member # 12673) on :
- Yes, as TuTu suggests, good to be clear about the name. There may be more recent detail but from my notes a while back -
Haven't been on lymenet for a month or so and your post was the first one I saw when I logged in. I read about half of the responses and will read the rest soon.
Since flagyl was the trigger for your movement disorder my guess is that you have babesia or a similar bloodborne parasite and that is what needs treated right now even more urgently than the lyme.
Hubby had many different movement disorder symptoms over the years of his illness including the head shaking that you describe. If the shaking continues in your sleep then it is not Parkinson's. Also it is doubtful that it is seizures either.
My guess is that the babesia or whatever blood borne parasite you have is either causing brain inflammation and/or a lack of oxygen to the brain and that is the true cause of the movement disorder.
It does sound like you have POTS or dysautonomia which does need treatment due to your severe blood pressure fluctuations.
But I think the movement disorder issues are not from the POTS since they do not stop and are not triggered by standing or sitting up.
Valiam, Ativan or Klonipin may help.
If you have not been tested then I would be sure to get tested for all types of babesia including WA-1.
If the hospital can do it then a brain SPECT scan would be very helpful. It could show the severity of your brain inflammation or lack of oxygen.
There are 2 different things I can think of that helped hubby probably as much or more than any meds with bloodflow to the brain. At different points in time each of these things really made a significant difference in his ability to function.
First is lumbrokinase. Any infection and especially lyme and tickborne diseases can cause hypercoagulation or thick blood. Other enzymes which work in a similar manner are wobenzyme and nattokinase. Also the medication heparin.
Second is high dose niacin -- the kind that makes you flush. Hubby did not even flush until he was taking 200 mg per dose which is a very high dose.
I would suggest taking very high doses of vitamin C, CoQ10 and fish oil. You need antioxidants which cross the blood brain barrier and also the good fats to help your brain heal.
Have your parents call your LLMD to discuss babesia.
I am very disappointed in your doc for not at least talking to the hospital docs.
Hope you are feeling a little better.
Hubby had various tremors and seizure like spells for about 8 or 9 years and they went away for over a year with very aggressive babesia treatment. But then he got 2 more tickbites and it was downhill from there.
I know you are scared, but don't give up and don't let any doc tell you that your movement disorder is due to anxiety. That is what they will say if they can't figure it out -- so don't be surprised if a psych consult is suggested.
Bea Seibert
Posted by Jessig627 (Member # 36240) on :
I have been reading all the posts and just wanted to say I'm keeping you in my thoughts and prayers.
I suffer from tachycardia and found improvement with the use of a beta blocker and Xanax. I don't suffer nearly to the degree you do, but by calming your heart and the feeling of "dread" down will hopefully help you quite a bit.
Be sure to find a good cardiologist to work with for the beta blockers. I've never been tested for POTS, though I suspect I have it.
My blood pressure is extremely low and beta blockers will lower it farther. We had to play with quite a few to get the meds right and stabilize my blood pressure. I suffered from fainting spells, black vision and all kinds of craziness until we did.
I will keep you in my thoughts and prayers for a speedy and full recovery. :-)
Posted by BoxerMom (Member # 25251) on :
FWIW, I'm completely on board with Bea. This would be Babesia in me. And monotherapy just stirs it up. It isn't enough to resolve the infection.
Posted by Keebler (Member # 12673) on :
- Ema,
I'm so glad that Bea (seibertneurolyme) is back. I'd been hoping she could offer advice and she really knows what she's talking about (as does BoxerMom who agreed with her).
[Not to discount others, of course, as you have some very good input from many.]
Immediately, though, I hope you can take Bea's advice on action required. Words cannot express just how extremely well educated and experienced she is all all these matters, including hospitals.
and
Bea,
So glad to see you here. Missed you. Good cheer to you. -
Posted by seibertneurolyme (Member # 6416) on :
Hi to Keebler.
Emma -- you said your head CT was normal. That does not rule out brain inflammation or encephalopathy or meningitis.
An MRI would be the test which would show brain lesions -- not a CT. Actually even a normal MRI would not rule out brain inflammation or encephalopathy or meningitis.
Since you only have headaches and are not complaining of extreme sensitivity to sounds and light then you probably do not actually have meningitis or encephalitis.
Most lyme patients have varying degrees of head pressure type headaches. That is how the lumbrokinase and niacin helped hubby. They actually did not have much effect on his tremors and myoclonus and seizure like spells.
A spinal tap is not a good test for lyme and I don't think it would be very helpful in your particular situation.
But a brain SPECT scan could be very useful -- but it would depend greatly on how well informed the radiologists were who read the test results.
Please follow-up on treatments for your POTS symptoms and continue searching for answers once you get home.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Ema... Hope you feel better today .. and yes, please consider what Bea is telling you!
Posted by luvema (Member # 26650) on :
I am at home. they discharged me.
The doctors did their best. My lmdd actually tried to call them back today, but i guess no one picked up at the hospital or the number was wrong.
I have pots so they gave me beta blockers. they did lots of tests at the hospital everything is normal.
I am thinking of doing the lyme culture test. I want to know If have lyme disease for sure since I still have no clue. got some postive bands through igenex, but how accurte is that?
Never have my white blood cells been high or low. I know lyme doesnt effect the white blood cells. But I really want to be sure before i put chemicals (antibiotics) in my system. Flagyl I think messed up with my nerves, and I really have a messed up nervous system.
I am still feeling the same. head is still shaking.
Beta Blockers helped with the heart rate and made it s little easier to walk today.
I went through very stressful events in my life, and I think that triggered a lot of my symptoms... from house shooting, physical and sexual abuse, and constent pressure from my parents. I think that played a big role but that made me a much stronger person.
I am not giving up, I am putting nursing school on hold right now.
I want to remove all the silver fillings from my teeth ( I have 10).. really big ones
Thanks everyone for the help, and if you guys have any suggestion i'll really apperciate it.
Posted by luvema (Member # 26650) on :
i am reading back on posts now since I couldnt really concentrate earlier. Bea thank you so much.
I was tested for babesia before and it came back negative, but I shouldnt rely on tests.
I had an mri actually two months ago and it was fine.
I am going to try the suggestions and I hope the movement disorder and pressure stops.
I will read the rests of the posts later. I am a bit fatigued
Posted by luvema (Member # 26650) on :
before I left the hospital the medical student told me our testing for lyme disease is never accurate especially in late stages, so it's possible that's what is causing your health problems.
I should of got his contact infromation. He took my phone number to tell me the results of the lyme test when it comes back. He was such a caring person always checking on me. It made my hospital stay less painful.
In one year he's going to be a head, nose, and throat doctor. I hope one day when he comes across someone with similar symptoms as mine he'll consiser lyme disease.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by luvema: I am at home. they discharged me.
The doctors did their best. My lmdd actually tried to call them back today, but i guess no one picked up at the hospital or the number was wrong.
I have pots so they gave me beta blockers. they did lots of tests at the hospital everything is normal.
I am thinking of doing the lyme culture test. I want to know If have lyme disease for sure since I still have no clue. got some postive bands through igenex, but how accurte is that?
Never have my white blood cells been high or low. I know lyme doesnt effect the white blood cells. But I really want to be sure before i put chemicals (antibiotics) in my system. Flagyl I think messed up with my nerves, and I really have a messed up nervous system.
I am still feeling the same. head is still shaking.
Beta Blockers helped with the heart rate and made it s little easier to walk today.
I went through very stressful events in my life, and I think that triggered a lot of my symptoms... from house shooting, physical and sexual abuse, and constent pressure from my parents. I think that played a big role but that made me a much stronger person.
I am not giving up, I am putting nursing school on hold right now.
I want to remove all the silver fillings from my teeth ( I have 10).. really big ones
Thanks everyone for the help, and if you guys have any suggestion i'll really apperciate it.
I'm so glad that you are home now! However, I don't understand why they didn't give you Klonopin, or a similar med for your head shaking. Not to mention IV magnesium. HOw is you head shaking now?
Sleep, finally, should help.
What you said above about all the pressure from you parents, abuse, home shooting, etc.----whew, the stress of all that could cause, or add to, all kinds of symptoms!!!
It sounds like, among other things, you could use both a med to decrease the overload from all these stresses, and low/no-cost therapy to help you process it all. There are ways to got low or now cost therapy---through local clinics, hospitals, etc.
Posted by dbpei (Member # 33574) on :
That med student sounds like a gem. It is encouraging to hear that he will be one of the mainstream doctors in the near future. I hope you get his number and tell him how much it meant to have someone like him caring for you. Perhaps you can use him in the future.
Happy you are out of the hospital and feeling a little better. I hope things start to settle down for you after all you have been through. Hugs.
Posted by Robin123 (Member # 9197) on :
Well, I hope you can get some sleep now!
You say you got some positive IGeneX bands. Could you post them here when you're felling up to it? We can discuss them here. In general, you can take it to the bank, so to speak, if you have Lyme-positive bands.
Posted by luvema (Member # 26650) on :
thanks everyone.
I love you guys, ans I apperciate all the help!!
I finally got some sleep with no vicodin and sleeping meds.
The head shaking is still the same. Now I am able to walk a little better.
Robin, I will post the results of the igenex test later today. I need to look for the paper !
Posted by Tammy N. (Member # 26835) on :
I'm so glad to hear you got some sleep. Sleep is a game changer for me.
Since you were just an inpatient, they could probably give you the name of that student doc. What a good guy. God bless him. We need more like him.
The stressors you have survived no doubt play a roll, imo. We can only take so much. I pray for a complete healing for you.
Rest and be well.
Posted by Keebler (Member # 12673) on :
- Did they measures porphyrins in any way: urine, blood, stool? All ways are best for an accurate work-up and samples must be kept in the dark, even during collection.
Genetics, Infections, Mold, Certain Rx, Chemicals and even Scents can trigger an attack.
You might want to consider a full porphyria workup (although testing is not always accurate, especially if not during an attack) -- even with clear tick-borne or other stealth infections, porphyria could account for this attack and symptoms.
And, if porphyria is involved, you would have a better idea of which treatments would be safest and the liver support methods required (and environments to avoid) to help keep porphyrins to a safe level. -
Posted by Judie (Member # 38323) on :
"Since you were just an inpatient, they could probably give you the name of that student doc. "
Ema, maybe you can be a nurse in his office one of these days. Posted by luvema (Member # 26650) on :
keebler, I don't think I ever got tested for that. Thanks i'll consider it.
Judie, hahah that would be great Posted by Robin123 (Member # 9197) on :
Good to read you got some sleep finally! What an ordeal you went through.
Will you be able to make an appt to see a Lyme doctor? It would be nice to see you follow up with someone who could make sense of what you're dealing with.
It'll be interesting to see if your symptoms subside, 'cause if so, that'll show things got stirred up by factors, as yet unconfirmed, that preceded your hospital visit.
If you get back to your "normal," it might be interesting to test any of those factors in the SMALLEST way possible to see if they start to induce any of your symptoms,
and then you'll maybe know more about what can set you off, and then you try to avoid those factors as much as possible.
Posted by lymetwister (Member # 19590) on :
I 100% agree with Gael, Parasites !
So sorry your going through all of this. Unfortunately, they can test you from head to toe, but they won't find anything.
POTS was one of my very first symptoms. It's much better now, but not gone.
I would ask for some Pain Meds. NOT Muscle Relaxers like Flexaril. I would think your CNS is being overstimulated causing the muscle Jerking. Therefore Flexaril or other muscle relaxers won't work. Give it a try and see if it calms you down if you feel comfortable with it.
Hang in there, but perhaps, refocus your treatment when you get out. The biggest mistake of most LLMD's, including the one I had, is they don't address Parasites. This was a major setback for me.
Your not dying ! I know your scared and uncomfortable, but try not to add fear to the fear. Just my 2 cents
((((Hugs))))
Posted by n.northernlights (Member # 17934) on :
that muscle twitching thing is more common over here in europe with lyme. Lots have these uncontrollable movements with lyme. Different lyme strands from the U.S. types. (that is why doctors wanted to do spinal tap I guess, for neuro lyme but that test is not accurate either)
Posted by canbravelyme (Member # 9785) on :
You know, I wonder if Ema picked up this strain in the Middle East...
Posted by luvema (Member # 26650) on :
I think I did.. the only time I remember seeing ticks in my life was in the middle east.
Posted by canbravelyme (Member # 9785) on :
Ema, It's very important that your LLMD knows this; I assume you've mentioned it?
You might also contact www.ilads.org , and ask them whether they have any physician members in the Middle East -- and then see whether you can set up a consult via. phone or Skype, if you have no plans to visit that part of the world in the near future...
Best,
Posted by luvema (Member # 26650) on :
Thank you
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by luvema: [QB] I think I did.. the only time I remember seeing ticks in my life was in the middle east.
That's interesting - do you remember when you first got any symptoms?
If it is from the Middle East, then it would be a good idea to research what kind of strains and symptoms show up from there, if possible.
Posted by luvema (Member # 26650) on :
how would i find out what strains. I tried to look it up, but couldnt find anything
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