Topic: i am admittied to a hospital right now.. help
Rumigirl
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posted
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.
Posts: 3771 | From around | Registered: Mar 2008
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posted
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.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
vicodin relaxed my muscles a little bit.. but pain is still there and cant sleep. too frustrated. I hate being at the hospital
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
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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!
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dbpei
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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. Posts: 2386 | From New England | Registered: Aug 2011
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poppy
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I don't believe we are getting thru.
Posts: 2888 | From USA | Registered: Mar 2004
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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 ]
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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canbravelyme
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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.
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posted
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
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
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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!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
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.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Carol in PA
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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.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
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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,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
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. -?
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Judie
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"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.
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Carol in PA
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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.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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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.
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Judie
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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?
posted
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.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Judie
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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.
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Haley
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Have they considered doing a spinal tap? If you are having swelling in the brain you may have meningitis.
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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
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
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.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Carol in PA
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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?
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Carol in PA
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Also, I remember that one of your lab tests showed an elevated level of calcium, which is a symptom of hyperparathyoidism.
posted
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
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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Judie
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"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.
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momindeep
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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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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.
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Carol in PA
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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.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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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?
Posts: 13116 | From San Francisco | Registered: May 2006
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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
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
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"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?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
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- 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 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ellen101
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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.
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Keebler
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- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nonna05
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Poppy !!!! You said "you don't believe we are Getting thru".......how did you mean this?
nonna05
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posted
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
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Keebler
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- 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. -
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Razzle
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Member # 30398
posted
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...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"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."
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
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...
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
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)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Are they going to treat you for POTS, since they've diagnosed you with it...?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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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. -
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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...
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
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.
Posts: 1748 | From United States | Registered: Dec 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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???
Posts: 1885 | From here | Registered: Jul 2012
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posted
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.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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?
Posts: 1885 | From here | Registered: Jul 2012
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
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?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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).
posted
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.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
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.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
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...?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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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?
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
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.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
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 .
Posts: 482 | From Oregon | Registered: Feb 2011
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
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