posted
I can't get ahold of my doc I am shaking uncontrollably, diarrhea, dry mouth, vomiting... I am scared adn don't know what to do.I need help. please
posted
I started biaxin and plaquenil 12 days ago.... I don't think its a bug... but I don't know. I am in severe pain in my back as well. I am so scared
posted
I started biaxin and plaquenil 12 days ago.... I don't think its a bug... but I don't know. I am in severe pain in my back as well. I am so scared
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
If you feel that you may be in danger at all - err on the side of caution! - you need to call 911 immediately and get to the hospital.
When all this happens at once you need to be seen, just to make sure you are ok, and if you aren't, to be under care.
In the meantime, try to breathe from your lower abdomen, slowly, take a slow breath in, feel your abdomen expand slowly, then breathe out long and slow. Keep doing this, and try to relax.
If you can't find anyone to call to take you to ER instead of an ambulance, then at least call someone to talk to them to help you get through this while you wait for the ambulance to arrive.
I know how scary this can be, but you will be ok, just get to the ER ok?
I am not a doctor, but I am highly recommending you see one pronto.
posted
I called the ER for advice and they hung up on me, i don't have the stamina to call back. The shaking has been all day but worsening now. its coming from inside like it feels like my insides are tremoring.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Erika,
Can someone go with you to an emergency room?
Here is another suggestion I have found helpful:
An over the counter antihistamine, Benadryl, is used by some medical practictioners to stop vomiting and nausea.
I have used it for this purpose, twice when I had food poisoning. It was like a miracle, just stopped my nausea and vomiting fairly quickly.
Benadryl will make some people very sleepy and tired though. But if you are throwing up uncontrollably, it can help.
I am not a doctor, so it is best if you seek medical advice first. Could be that you have a stomach virus, or food poisoning.
Posts: 2557 | From home | Registered: Aug 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Please find someone to get you to the ER Erika, this isn't something to mess with - if you are vomiting, tremoring, shaking, dizzy/out of it, and have intense back pain, you need to go NOW.
Are sweating or have a fever or having trouble breathing? Tell them any of that if so, and tell them you feel you are about to lose consciousness, as you described. They can get in deep doo-doo for hanging up on you if you let them know these things.
Otherwise get a neighbor to take you now.
The potential risks far outweigh the annoyance/cost.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Oh Erika,
Hang on. How long have you been infected? This COULD be a big die off and it makes you feel like crap.
It is very scary when you first experience this. Do the deep breathing.
In any case, you should not have to suffer so much. Back off of the meds for awhile. Did your doctor call you yet?
If not, that is not very good.
I would highly advise going to the ER to get checked out and to ease your mind. Fear can really add to the awful symptoms too.
I know, I've been there.
PM me if you want, I'll hold your hand through this.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you can't find someone to take you, CALL AN AMBULANCE NOW!!
-------------------- 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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Hang in there! Let us know how it turns out when you can.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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bettyg
Unregistered
posted
hope you're on way to ER by car or ambulance NOW!!
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
CALL AN AMBULANCE please. Don't assume herx every time. Bad advice and very dangerous. It could be, but why risk it?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It is better to err on the side of caution, but it sounds like a herx to me, or a bug, like from some bad food or the flu.
So if you decide not to go to the ER, just know that it's not permanent, and it will get better. Please keep us posted.
But like i said, err on side of caution, but the internal shaking sounds like a herx.
Don't take your next dose of meds.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Sure, it could be a herx... but you are severely ill. Get to an ER somehow. Forget about telling them you have tremoring. They'll think you're nuts.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey.
Hope you went to the ER!
Please let us know you are okay when you can.
Your lyme family is concerned.
Greta
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Dawnee
Unregistered
posted
I agree.. err on the side of caution always. I had very bad tremor on my first big herx.. along with very flu like symptoms and head pain.
But I did not have the back pain and I had bad headache and feeling like my head would explode.
Listen..even if it is a herx you still need to be at the hospital. My LLMD says herxing can land you in the hospital and I think that is the best place for you to go right now. *hugs* Let us know when you can. Try to calm down a little.
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had this happen to me back in 1998...severe projectile vomiting and diarrhea at the same time just shooting out of me with incredible pain.
Rushed to er via ambulance. The reason I am mentioning this is, I didn't know it was Lyme disease and wasn't on any meds. So it couldn't have been a herx.
Even if it were, these symptoms can indicate something very serious and require immediate medical attention.
So, please everyone don't hesitate to call an ambulance and go to the ER if this happens to you.
I know sometimes we hesitate because we don't want anyone to think we are overreacting.
I think we are so used to people negating us that we become shy when we really need help.
Erika, I hope you went to the ER and you are okay.
Please let us know,
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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adamm
Unregistered
posted
Perhaps you should go to the ER.
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I hope you are at the hospital right now. Please let us know how you are whenever you can! I'm praying for you right now Erika!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The ER will not give any medical advice over the phone. It is a huge liability issue. They used to but now they just cite a little script that basically says come in if you feel you need to be seen.
Did you call your LLD or PCP? Hopefully you are in ER now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Thanks for your concern. I did not go to the ER but I did talk to my PCP, he thought I should go as well but knows it is no eay for me to do.
He advised me not to take my PM dose of the meds, DRINK ALLOT and rest... I did all of those things and feel a little better today.
I still have the internnal shakes, not as severe and a little nausea, but not feeling so violently ill as i did yesterday and basically the day before.
Lymestop - yes I started my full dose on Sunday and by Monday I was sick. My LLMD as not called me back in 2 days. I BEGGED him to call me and he has not. I will not be taking the full dose until he gets back to me.
I just don't know if its the meds themselves or a Herx???? I wish I could tell.
Anyway Thank you all for your support, I don't get much of it around here thats why I came to you guys for advice last night, I knew you'd be the only ones who'd understand.
All I kept thinking to myself all day yesterday was I wish I could call someone from Lymenet!! You guys are the best, thank you.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If your LLMD wouldn't call you in that situation, I'd dump him/her ASAP. Sad. How rude. It shows how much they care.
I'm so sorry you're going through this. I'm glad today's a little bit better, but I hope you consider the ER next time. Your life isn't something to play with and guess.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
From my experience, I would say that Plaquenil is a butt kicker. I pooped on myself in my sleep twice, but finally could tolerate it and it helps considerably.
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Were you told to start at a low dose?
200mg Plaquenil every other day for a week, then every day the next week with 500mg of Biaxen added. Then the third week, 400mg (200 x2) of Plaquenil, and continue with 500mg of Biaxen per day. By the fourth week you should be up to full dose.
500mg x 2 Biaxen 200mg x 2 Plaquenil.
Call me if you need help. I'm right down the street from you. I've been through all of this. No need for you to have to fall into the same pot-holes that I and others have. You will "never" get a phone call back from your LLMD during an emergency. I was dying of sepsis and having an allergic reaction -- at the same time -- and he said nothing. He didn't get back to the hospital -- who kept trying to reach him too -- for a week.
His excuse? He was at a conference, and even if he hadn't been, he said it was my primary care doctors responsibility to handle local emergencies. Take that how you will.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I was told I "could" start at 200mg a day plaquenil and 500mg a day biaxin for a "few" days. Then to full dose.
When I first started I did only 1 day at half then went right to full dose not knowing what I was in for.
I started having LOTS of trouble breathing, so I then took 1 day off and started again. This was last Tuesday. I did half dose for 5 days and then this past Sunday I started full dose. I was OK Sunday, felt kind of bad Monday but still took the full dose and then yesterday was like a toxic bomb went off in nmy body!
I only work in the office 2 days a week and of course yesterday was one of those days. I fought through the day at work and tried to pretend I was OK. My coworker kept asking me why I was twitching...
Anyway I made it through the day (crying all day) but just progressivey kept getting worse. Especially after I took my morning dose. Truly I have never been so scared... Driving home (45 minutes) I felt like I was in another world, I couldn't concentrate on what I was doing.
It was awful I felt so helpless! Trying to explain a herx to my family is like talking to a wall.. They just can't and don't understand.
My dilemma for today is.... Do I take the meds? Do I take only 1 dose? Or none? To be honest I am voting for none, but am afraid it will do permanent damage!
Stated internal tremors, nausea, headache, backache all Herx. Well she didn't use the term Herx just said "its the Lyme coming out"
She says I NEED to continue meds. Says I can break for 2-3 days but then MUST go right back on full dose.
Says I can do more damage by not killing the Lyme. I asked how long to expect the herx, she said could be days could be months.
I am back to feeling helpless again. I guess I just have to do this right? The problem is I am not allowed to be sick. My family doesn't get it, I have 3 kids, one with special needs, I work... I sort of wish I never pursued this. I felt better before I started treating. Although I was very sick, I had learned to adapt to it and was able to "live" with it.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If you push too fast you'll just end up in the ER. You know your body better, and us Lyme patients know what we've experienced with treatment.
Take your time, the disease will not become resistant using those meds, even at low doses. Some people herx like crazy just at half dose, so follow your instinct.
Being hospitalized "is" worse than not killing the Lyme because it can do damage much faster if the body doesn't have the ability to manage the immense stress of the Herxheimer reactions.
Plus the infection doesn't reproduce "that" fast that taking some time off will suddenly destroy all hope. I know the NP that you've been seeing and I think she's a *****.
I actually got into a conflict with her over her methods of handling patients, her advice, and her attitude. She's a ****in' ice queen.
Here is what I wrote the doctor about her:
"The last issue is I wanted to thank you for being candid and listening to what I needed to say during my appt on 06-30-07, I realize you stayed late to help fit Katie, Stephen and myself in but I was incredibly discouraged and needed support that only you could offer.
Your N.P. was far from helpful in addressing my concerns and quite honestly, I don't like her. I didn't mind seeing her for quick check-ups, but when I have serious reservations about "toughing it out" when I was just hospitalized not long ago from PICC line sepsis and an allergic reaction, I think that's unreasonable.
She tells me it'll be fine, when it's not fine when I've ended up in the ER 3 times because of herxheimer reactions or medication interactions! I've learned my lesson, she's incompetent and foolish in advising patients to push beyond their capacity.
I also expect my questions to be taken seriously when I've traveled far to get a thorough answer which can't be had by e-mail. I don't want to be processed, filed, indexed, stamped, and then rushed out of the appointment with insufficient answers and be told by her that you can't help me with my jury duty disability notes when I know that isn't true, given you had done it many times before.
I also don't appreciate when patients that I've brought to the office for help ask for me to be present during their appointments for support, and then I'm told to wait outside by your N.P.
I realize certain aspects of appointments such as examination and testing ought be performed privately, but if a patient who is all alone -- which is often the case with many Chronic Lyme patients -- requests that I be present during other parts, they ought to be able to have me present.
They shouldn't have to argue with your N.P over the reasons they want me present in order to appease anyone.
As I left your office and walked down the hall with you, you asked why you were seeing cases that your N.P. had already seen? In my opinion it's for the reasons I've already listed. It's because I think she rushes patients in and out of their appointments.
I feel she is detached and difficult to trust, but especially difficult to work with. I feel like I'm a number, another case interfering and punctuating a precious moment in her day, not a person in need. I feel like a human being when I see you, that's the difference.
My questions actually get an answer from you instead of impatience and indifference which is what I feel I get from her. This is my opinion, and I suspect I am not alone, though I hope I am.
It is my hope by confronting this that you'll be aware of this possible shortcoming in the care other patients may be receiving."
He wrote me back.
"Thanks for your note; I appreciate your being frank, and appreciate the need to talk with me.
I don't think it's unreasonable to have a patient be first interviewed by the doctor (or NP), then have whoever else sit in; each one of us does it a little differently. Don't be offended. Also, I'm happy to see you myself at all future appts.
PS. The HHV6 test came back negative, so we'll continue with our Lyme treatment regimens"
In the end, not only is the knowledge insufficient in that office, but telling very sick people to "tough it out" when they're having life threatening herxheimer reactions is foolish. That was one of many reasons I finally left that office.
Incorrect information
lack of comprehensive testing,
lack of personalized medical attention.
Difficulty in reaching during emergencies,
supports incompetent staff,
is vague or nonchalant about serious concerns with co-infections, detoxification, dietary insight, supportive symptomatic treatments, pain management.
He doesn't follow Dr. Burrscano's guidelines because "those people" in that group are too progressive, and they make a lot of assumptions.
He also doesn't go to any of their conferences involving "that group."
I call him an ILADS/IDSA fence sitter. The only thing he doesn't agree with in respect to the IDSA guidelines is the panel produced them too quickly without leaving sufficient consideration for the scientific data supporting chronic persistent infection with borrelia burgdorferi, which he said had been showing up in the medical literature.
He refused to sign off on it, saying that he's been noticing patients improve after months of Tetracycline and Biaxen monotherapies. He agreed with everything else, ranging from co-infections being rare, easy to treat -- if not entirely resolved without treatment at all in most cases.
[ 02-25-2009, 08:43 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
BOSTON, MA
Hello Erika,
I think we spoke in the past. I'm also from Boston and seeing Dr. D.
I started on 01-01-2009 Clarithromycin (Biaxin) 2000mg per/day + Hydroxychloroquine (Plaquenil) 400mg per/day
The first month (January) I was pretty sick, more than normal.
I had Very little breathing problem But, I did have - My worst problems have always been shaking/chills/cold/shivering all on the inside and my first month on these pills I had all these twice as bad.
I also had diarrhea, dry mouth, (MORE)> Eyes/Vision: double, blurry, increased floaters, light sensitivity.
+ Upset stomach + Mood swings/ no patience + very bad nausea + dark urine, acid reflex.
I'm assuming it was the new pills getting to know my body!!!
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Boy Metallic you really hit the nail on the head... She IS very difficult to talk to, and does treat me as if I am wasting her time! I wish I knew you before my appt because I would have dragged you with me! How do you know so much? Is it through personal research? You seem so knowledgeable on all aspects of this disease, treatments, doctors etc...
They did not do any testing on me except for WB and they have not given me those results yet. I am so torn right now. I want to go to someone else, but the someone I want to go to doesn't take my insurance yet......
Does the fact that I "seem" to be Herx'ing confirm the Lyme dx? Because thats what she keeps saying to me.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Unfortunately it's thru personal experience. I don't know everything, but I know somethings -- mostly about the individual doctors themselves, that's my specialty as an activist you could say. I know who is who and what their strengths and weaknesses are.
Well, I'm not a doctor obviously, but you're welcome to tell me -- or us here -- your history, prior diagnosis, prior medications, the specialists you saw (Not necessarily their names), symptoms, any abnormalities that have shown up in testing. Was a Brain SPECT performed? UMASS Memorial in Worchester has a specialist in Radiology who knows how to read Chronic Lyme Disease SPECT scans.
Anything you can provide, including getting that Western Blot from Dr. D, would be useful. Also Dr. D should have given you a written letter after your appt (usually by mail) detailing what your appointment was about, what was discussed etc. He sometimes adds in things that you didn't cover during the appt. See if anything is mentioned in those about the WB.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
You might be sorry you mentioned that! Your about to get the LONGEST PM of your life!
I would love to hear what you think about my history. I would post it here but its long and drawn out and I know most can't read long things so I will start with you!
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Request copies then, he'll have them on file. He does a good job in that respect I feel.
Just call the number, leave a message for Betsy requesting that your medical records for each visit with the doctor be sent. Leave your full name, home phone and address, so they know exactly who you are.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Thank you so much for always looking out for me! Its nice to have that....
I have an appt with my PCP tomorrow and intend to ask him about singulair... I have a list of things to talk with him about.
I am going to start looking for a new LLMD I think.. At least to get other opinions and such. We'll see what happens.
I hope your doing OK, I know you Herx as bad as I do... BTW my parents are heading your way this weekend, my father is having a Harley meltdown and NEEDS to ride so he's heading to where theres no snow and its warm!!
What is about 80 where you are??? LUCKY!!! Besides snowmobiling I hate winter!
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Erika, Are you on www.lymefriends.com? Have you ever come into Lyme Chat? We are there until the wee hours, always people right there to help you.
You might consider going to Dr. L in Wellesley. She is awesome, and new. She gave me her personal cell phone number and private email address. I would never use them unless it was a dire emergency, but boy is she responsive and reachable.
She also rocks as an LLD. I started with Dr. D myself. That was about 3 years and 3 LLDs ago.
[ 05-25-2009, 09:48 PM: Message edited by: Lou B ]
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tracy, you're too late. Muhahaha, I already infected her with Dr. L. *teehee*
P.S. Dr L gave permission to use her name online, for those who aren't aware.
[ 05-25-2009, 09:49 PM: Message edited by: Lou B ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You've got it in you. Besides quitting is for quitters, and you're no quitter if you live in Massachusetts. How can you pay your taxes if you quit!? Gotta stay strong so you can pay for my free medical care and stimulus check! Hehe, but seriously, giving up isn't an option. You fight until the very end in order to maintain your own integrity and self respect. Everyday I survive is a day filled with success.
If it seems like I set the bar low, it's only low if you're sitting on a high horse. It's a challenge to live and fight Lyme Disease, but it's not insurmountable. You play the cards you're dealt. Folding isn't an option if you've come here asking for help.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thansk Mike, but right now my hand is pretty crappy, I have a 2 of hearts, a 5 of diamonds, a 4 of spades, a 7 of hearts and a a Queen of diamonds... What can I do with that!?
Thanks for the advice though... as always I appreciate your advice.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You can pick another card. You may have a **** hand, but you can bluff, you can pick another card, you can give up a card -- it all depends on your "perspective" or....what game of cards you're playing.
I just change the rules to suit whatever I need at whatever time. Sometimes I have to let go and accept certain things temporarily to achieve a larger goal. Sometimes I have to take a risk based on limited information and just go forward acting as if, and other times, on some issues I just have to fold.
The larger game, the ultimate "winner" is the one who leaves at the end of the night, - that final game.
This ain't the final game, there are a lot of opportunities to explore. It's a challenge, it's not a conclusion.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
You and I spoke on the phone a couple of weeks ago....remember I told you that by week 2 of my being on the biaxin/plaquenil I was a mess. I had all of the symptoms you are describing. A week later I was hospitalized. You don't want to let yourself ever get to that point. I was able to tolerate the medications (i.e. herxes)more with time and am much improved today!! Stick with it but not if you get to a point where you are praying for death:)
Hang in there....good news is that I think this definitely supports herx, hence infection!!
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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Slow down, start over at low dose and gradually work your way up.
You want to get well which is why you were in such a hurry to start, but don't give up.
And if you work 2 days a week, wait to start over when you are off and can rest.
Good luck!!!!!!!!!!!! Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Actually guys, Deaf wrote this 2 months ago, in February, so she got through it thankfully.
I've done the same thing though, not realizing that it was written awhile ago. Great tips though!!
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