they came this morning to do blood tests to check my hormones. They also did a maginsuim test and other vitamins.. I think that came back normal.
i am just hoping my lmdd would talk to them, i feel that she is carless. They are very understanding and trying to see. even one doctor at the hospital told me I think lyme disease got into your joints and heart, but they are waiting to talk to my lmdd and the test. I want her to explain to them that the tests ate not accurate.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
Most good doctors realize that Lyme affects the heart and joints. That's because the IDSA admits that.
I was sure hoping you'd be better today. What are they giving you to help? Any detox stuff at all??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Might these help? As they sound somewhat open to learning more, you might be able to just pass these links to them. You need to rest. Take care. Good luck
This is NOT to have them involved in your lyme treatment - they cannot do that. They are not well enough educated about it.
But, just to explain why you don't want to sign off on any more lyme testing, and if they are really interested in learning more:
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010 -
[ 04-12-2013, 02:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The more I learn about the human body, the more I realize the endocrine system (hormones) have an effect on everything!
Unfortunately, like Lyme testing, hormone test results are also somewhat controversial. Apparently, it is fairly commonly accepted that saliva cortisol tests (1 sample 4x day), are more accurate than blood cortisol testing, for example. Perhaps, ask to consult with an Endocrinologist?
What I would keep my eye out for in your shoes is a highly intelligent doctor, who is a really decent human being, who you can ask questions of, and get into an intelligent dialogue with. Then I would find out whether s/he might lead your case. But that's me. I read that you're 21 -- how are your parents handling this?
In keeping with what Keebler is suggesting, if they would like to find out more about Lyme disease, you could always suggest they call ILADS: 301.263.1080
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I don't blame your lyme doc for not wanting to get involved at that hospital. There are good reasons for this. Doesn't matter what the hospital staff says about their willingness to understand. They are going to take the IDSA view of it, which is why you don't want them to get involved in your lyme diagnosis and treatment.
The hospital should be looking for symptomatic treatment. I don't think magnesium testing is very good either. It does not look for what is inside the cell, is my understanding.
If this is a herx, it will eventually go away on its own. Hope you have good insurance in the meantime.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Have they tried Benadryl? There is a rare side effect of metronidazole (flagyl) that involves neck and facial muscle spasms. Benadryl often arrests the problem completely.
Posts: 60 | From Maine | Registered: Jan 2012
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poppy
Frequent Contributor (1K+ posts)
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posted
Hey, good idea about benadryl.
Posts: 2888 | From USA | Registered: Mar 2004
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Went through something similar although not as severely as you describe.
If I am going through an extremely rough patch with treatment, I often will get the head jerking -- it happens every few seconds.
It ties in with so many things that it's pretty hard to discern what is what.
I found if when one of the infections gets ****ed off, I can go into a pretty hellacious mode -- very little or no sleep. Alot of wierd stuff with my throat feeling as though it is closing up when I try and lie down and get some sleep --- and eventually the head jerking begins.
It's alot like the Myclonus jerking I would get early on when I was first displaying sxs
Here's the thing, about 4 years ago I ended up with heart spasms --- and a hell of a sore throat as well -- when I first went to my GP to find out what the problem was, the nurse happened to do a test for strep. It came back positive ----not saying it stopped the heart spasms, but there had to be some sort of a tie in, IMO
Many times when I really hit something hard, the sore throat, closed up throat, apnea, all things throat related seems to come back in full force.
Is it Babs? Bart? Or something yet to be discovered? Who knows.
What got me over the hump when nothing else would? Klonopins.
Please, if the doctors have not administered any -- do talk to them -- it is prescribed not only for anxiety/panic disorder but for seizure disorders as well -- and if you are experiencing what I sense you are -- it is like a form of an ongoing seizure.
It really sounds like the Flagyl kicked things into gear in a fierce way for you.
My LLMD used to say that it was rugged stuff and he was more prone to prescribing Diflucan because of the fall out that the Flagyl could often illicit in some of his patients.
Posts: 192 | From New England | Registered: May 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Canbravelyme asked, "How are your parents handling this?"
In Ema's past posts, she said that she did not go to the doctor when she was having severe abdominal pain, as her dad is not working, and there were no funds.
Although they did seek medical care for her, they are probably still under financial pressure, and we know that hospitals are very expensive.
[ 04-13-2013, 03:36 PM: Message edited by: Carol in PA ]
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
my parents are very supportive.. they are here with me. i am getting a lot worse... uncontrollable hand an head movements.
my lmdd didnt talk to the doctors here. they are still putting lyme as a possibility.. they are brining an infectious disease in. I know bad idea! but they are trying to find what they can. if my lmdd talked to them things were of been easier.
they diagnosed me with POTS so far.. but they are looking at Pots as a symptom of something, and that something else is stimulating it.
my cortisol was a little low.. so they are working on things with that. all my vitamins are normal.
hands are so weak they keep moving on their own.
i was on flagyl for a week and half prior to these symptoms. i am also peeing way too much and this been going for months. they did a urine test everythin is fine
can this be related to lyme?
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
As I said, it just so happens I've been researching POTS / Dysautonomia and the adrenals...
Cortisol is produced by the adrenals, and low cortisol, I believe, indicates that your adrenals are suppressed.
Aldosterone is a hormone linked to all this � if your Aldosterone is out of whack, it will cause frequent urination. My [limited] understanding is that aldosterone regulates the salt and water ratio in your bloodstream, which might be the link between the endocrine (hormone) system and POTS. Please ask them to check your aldosterone levels, which need to be done at the same time as your Renin levels. If you're showing low cortisol, they should also test you for Addison's disease. Please ask them if you could be experiencing an adrenal crisis.
I have been experiencing vomiting / diarrhea for nearly ten years almost daily. I have tried everything to stop it, and I'm pretty sure it's the POTS / Dysautonomia and adrenal connection.
In the meanwhile, POTS is frequently treated by increasing your salt intake � doctors prescribe salt pills for this. The improvements can be dramatic � since I started salt dosing four days ago, I have not thrown up. Today, when I was about to go into one of these vomiting episodes, I stumbled to the kitchen fridge and drank some of my salt / chicken soup mixture � it STOPPED dizziness / vomiting / diarrhea; I kid you not.
Salt also supports the adrenal glands.
Given your condition, if you haven't got a POTS specialist on board, you should get one in ASAP, as you've got that diagnosis. Considering you're showing low cortisol, I'd ask to see an endocrinologist as well.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
isn't sad that my lmdd is one of the best in orange county, and she didnt talk to the doctos here. there is a medical student who is insisting it's lyme disease and the professor is listening to him. he asked for my lmdd number and tried to call her, but I am feeling she doesnt want to talk to them.
this is a research hospital and they are willing to go for new findings, but I guess now I am stuck with an infecsious doctor. it's really difficult to type because my hands get very weak and my head starts shaking hard.
My biggest concern is this getting worse especially the head and hang shaking. it's hard to chew, when I chew my hea and hands start moving. kind of like a sezuire but i am will aware. this havent stopped for the past 3 days and it's only getting worse.
i am desperate for help, desperate for answers. i am in too much pain.. too tired but cant sleep. about 4 days ago I was able to walk and now i can't walk.
i am really scared guys... I want to be with my fiance but he is so far away from me. I want to get married. I just got accepted into the other round of nursin school. i was so happy that I got into nursing school with one of the highest grades. Now I cant even move and the pain is not stopping. muscles are way too weak.
I feel like i am getting tortured I don't know what to do
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Dear Ema, I am so sorry to hear all this. I pray that God brings the right answer into light. Thankfully you have that new medical student who is speaking up and being heard.
Very sad that your LLMD will not show up for you.
May God bless you and hold you close.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Perhaps someone here could email suggestions and links to the medical student, who could read the information and pass it on to the other doctors.
Although Lyme is the infection behind all this, there is still alot they can correct with minerals, vitamins, and hormones, to get your body into balance.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
My mother in law had strange twitches (head, face, soulders, etc.) last weekend and Xanax calmed it down. I forgot to mention this sooner. Maybe this would help.
She doesn't have Lyme, but other health conditions.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I am peeing way too much. they did a urine test and it was fine, now they are doing a 24 hour urine test.
they are susspecting something is up with my adrenal gland.
head movements are not any better. Also a lot of abnomine and pelvic pain.
I am going to keep updating. you guys support means so much to me. I feel here I can say my feelings, thoughts, and concerns freely and each one of you understands.
I really can't supress this enough. Thank you so much guys for everything.
keep me in your prayer.
I love you all.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Keep us updated. We're concerned about you. If they think its your adrenals, you really should see an endocrinologist. Please ask to see an endocrinologist, ASAP, if you haven't already...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ema,
I am sorry you are so sick. I am of course suspicious of parasites, especially since you are having abdominal and pelvic pain.
Ask them to test you for parasites even though testing isn't always accurate. Maybe they will pick something up.
Parasites can affect/infect every system in your body and can migrate to the head which they love. Google parasite symptoms and show it to the medical student who believes you.
Praying that they can help you.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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they are susspecting something is up with my adrenal gland.
Yes, and other hormones as well! They will figure it out, Ema!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Was the Strep test you had a blood test? Not a culture of the throat. If not, you should be tested for strep in the blood.
Do you have someone with you?
I am in S. Ca if you want to send me a PM or talk, not that I have any solutions, but just for support.
Posts: 2232 | From USA | Registered: Aug 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
luvema, God is near to you. speak to Him.. this bacteria over comes one with every thing possible.. you are resisting to it.. relax, let it be. may you become calm with out meds and struggle to get staff to understand.. Flagyl is a horriffic event to some.. bring Peace around you - mind over matter - focas on a distraction, let God in. Keebler is a wealth of knowledge.. gather your self with the advice others offer and take command.. be strong - being collected and sure of one's self while in a hospital setting, gets attention to those in charge.. they will respect your needs as you show maturaity and sound thoughts, we are all pulling for you here... hope your neck becomes normal again and soon..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
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: 3792 | 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
Frequent Contributor (1K+ posts)
Member # 9785
posted
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!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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: 2387 | From New England | Registered: Aug 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I don't believe we are getting thru.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
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
Frequent Contributor (1K+ posts)
Member # 9785
posted
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.
-------------------- 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
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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Member # 9785
posted
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
Frequent Contributor (5K+ posts)
Member # 5338
posted
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: 6956 | 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: 96239 | From Texas | Registered: Feb 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
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. -?
Posts: 13171 | From San Francisco | Registered: May 2006
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Judie
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Member # 38323
posted
"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.
Posts: 2839 | From California | Registered: Jul 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
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: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
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.
Posts: 482 | From Oregon | Registered: Feb 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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?
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