LymeNet Flash: Help I am Going to lose it.....Don't know what to do

This is topic Help I am Going to lose it.....Don't know what to do in forum General Support at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/17668

Posted by merrygirl (Member # 12041) on :

I have posted a bunch of emails and I am new and you all have been so good to me. I am sorry to keep asking so many q's.

I called my docs office this afternoon because I feel so sick. I have a high pain tolerance I gave birth with no pain meds. my doc is not LLMD

But has been good to me by caring for my pain. and treating me like a person. This is the first doc ever to do this for me.

I told the oncall doc (mine is on vac) because I was in tears due to pain and feeling so terrible. He called back and I have never met this man in my life m(nor do I want to ever).

I am sobbing and trying to explain to him how bad how I feel and that I was having a hard time functioning and caring for my two young babies. And the pain was too severe and my temp is going up.

I told him I was twitching and that my eyes felt like they were going to pop out and he said that was not Lyme.

You know what this jerk said to me? He said that I need to pray. And that I must have personal problems and to take antidepressants. I wanted to kick his @ss. I feel really almost diabled.

He said there was nothing for him to do and he wouldn't send me to the ER becaue that is where sick people go who are having heart attacks etc. He said put your baby on your lap and pray.

My doc is gone all next week. I don't know what to do. I know Lyme is in my brain. I can't remember what meds I have taken and what I am doing half the time not to mention the twitching.

I am going to find a LLMD but I know that is going to be a while before I get an appt. The Er is not going to do a damn thing for me.

Is this normal to feel so sick and disabled? He couldnt'/ wouldn't even answer this question.

I am on Piroxicam once a day and Vicodin with tylenol as needed. Am I being a wuss? WHat can I do please someone help me. My kids have no mother right now.

clearly most doc have no idea. Is this normal for acute Lyme to feel like this? It is screwing with my mind. Do I just suck it up the best I can until I am better? IS there anything I can do while waiting for LLMD? I cant take much more.

PLEASE HELP ME....Thanks Melissa [Frown]

Posted by lou (Member # 81) on :

Most ERs are no help at all with lyme problems. And talking to unsympathetic and ignorant doctors like the one you describe is only going to make a bad situation worse. You feel bad and then some jerk dumps on you. Give people like that a lot of distance because they will drag you down.

Are you on any meds for lyme, do you have any leads on a doctor? If not, get going. Ask friends, neighbors, relatives for help until you can cope better and are getting some medical help.

Don't give any specific answers to the questions I asked you in the paragraph above (not on a public forum). I am concerned because it doesn't sound like you have any real help for the problem yet.

Posted by merrygirl (Member # 12041) on :

I have an idea who I would like to see yes. I am calling on monday. I assume they are not open Sunday. I understand the importance of protecting the docs.

I am on doxy 100 mg three times a day which I hear is not enough.

Is this normal what I am going through? The level of pain and feeling so sick? Am I going to have to stick it out until a LLMD appt in probably 2 months?

What do I do now? Until that appt. Am I being a wuss and freaking out? Be honest. I trust all of you since you have lived with this. I am ok with being sore and blah but I need to function better, The head feeling like its gonna explode is no good.

Posted by Cassie (Member # 2106) on :

Wow Merrygirl, Sounds like you are having a horrible time.

Please don't ever think your being a wuss. The pain you are feeling is real and horrible. We can all have sympathy for you.

It must be so difficult with being ill and having 2 little ones to care for. We look after our 2 grandkids a few days a week, I am so lucky to have a hubby to take over when I'm not well enough. Do you have any support?

We are here for you, take care your friend Cassie [kiss]

Posted by merrygirl (Member # 12041) on :

I have been with my hubby for 11 years. He is so great but there is only so much he can do.. I don't think he realizes all that Lyme entails. I don't think I do yet either..

My hubby even bought me an IPOD to cheer me up which I have dying for but too broke to buy, but I cant enjoy it because every noise hurts.

I actually have a lot of support my parents live near by. which I am greatful for. I dont know. I appreciate this site and all of everyones help and thoughts. It would be way worse if a place like this didnt exist.

Posted by Vermont_Lymie (Member # 9780) on :

Hi merry,

sorry to hear you are feeling this way. Yes, acute lyme (and co-infections possibly) can make one feel terribly ill and in great pain. That happened to me too. And many folks -- fever, pain, yes, that is part of lyme and TBDs.

It is good that you are taking the doxy, but herxing (the die-off reaction) can make you feel even sicker at first. Hang in there, it does get better!

I found it much easier to take doxy twice/day; 200mg twice each day, with lots of food. Can you take this amount?

Most important is getting some assistance. This is the time for family and friends to step up and help with the kids and help take care of you.

Forget the idiot duck -- there are many of them out there. Very few doctors are knowledgeable about tick-borne diseases, and it will help to just forget this idiot and move on to an llmd.

take care and we are all here for you!

Posted by merrygirl (Member # 12041) on :

I increased my dose of doxy myself to 400. Hell if a doc doesnt want to help then I will help myself.

Is it better to take 200 mg twice a day versus 100 every 6 hours? Does the fever ever go away?

I am glad to know that this is relatively normal for Lyme and what I am going through. That was my main concern. My family has been great but I still have to do some stuff and I wish I didnt have to do anything.

It is mostly my personality that makes me want to so stuff since I have real OCD too. I feel bad for my kids and my hubby too. I have missed my daughters baseball games and I have been real moody. I was ready to check into a mental ward this afternoon not even kidding.

Thanks again

Posted by merrygirl (Member # 12041) on :

sorry for the double post not sure why that happend

Posted by Andie333 (Member # 7370) on :

Merrie,

I'm really sorry to hear about all you're going through...and about the hard time you're having.

I just wanted to let you know that a lot of the symptoms you described are ones I've had, too. Especially the twitching (mine progressed to seizures) and the unbelievable, searing, indescribable pain. It's really impossible, I think, for someone who hasn't experienced this to comprehend just how unbelievably horrible the pain can really be.

I agree wtih the other posters that listening to this doctor you saw is futile. Unfortunately, he doesn't sound atypical, though.

One more thing I wanted to mention is that one of the symptoms of this disease is depression--and for me, it was awful. You might want to keep that in mind when things seem particularly bleak. I ended up taking antidepressants, and maybe that's something you'll ultimately want to talk wti your doctor about.

It helped me to keep a symptom chart. I took it to my first appointment with an LLMD, and it also just helped me gauge the severity of my symptoms and also my healing, when things started to improve. You can find a good chart at lymepa.org

Take care of yourself, and keep us posted on how you are!

Andie

Posted by merrygirl (Member # 12041) on :

Thanks again. i am on zoloft but maybe will be increasing that dose in the morning. Well I thik I am going to crawl into bed now. Hopefully I will be better in the am. Thank you all. REALLY.

Posted by winelyme (Member # 11897) on :

I hope you get this in the morning and had a good nights rest. My

LLMD says rest is so so important. Hang in there you will get help

with this terrible disease. It's so frustrating to hear about another

uneducated Dr. Thank God for LLMD they are the angels!!!!

I'm a perfectionist and have learned to let go of stuff in order to

get better........ You sure have your hands full. I'm a mom and I

sympathize with your missing your kids events. Better tomorrows

are around the bend. [kiss]

Posted by Geneal (Member # 10375) on :

Dear Merry,

I am a Mom with Lyme disease who also has two little ones (5yrs old and 4yrs old).

I remember being where you are....sick, so sick.

I was afraid to go to bed at night because I thought my babies would wake up to find me dead in the morning.

This is part of the disease. These horrible thoughts/feelings of doom.

I existed. I don't remember cooking, cleaning, or giving my kids a bath.

I was consumed with how sick I felt.

I had quanitity, but certainly no quality.

I couldn't even appreciate my children.

"No baby, please don't touch Mommy---it hurts me"

"No, Mommy can't play with you. Mommy doesn't feel good"

Hang in there. This will pass. You may not be able to believe it, but things do get better.

Use the support you have. I didn't have any.

Just a husband who later tested positive for Lyme too.

I just found out my children also have positive bands for Lyme disease.

I still feel as if I am going to lose it too some days.

Make sure you are drinking plenty of water, especially with that doxy.

Get as much rest as you can.

Let others help you....that was a luxury I didn't and still don't have.

Although I don't believe the Dr.'s response to you about praying was appropriate,

I do believe in the power of prayer.

I am sending you calming thoughts and healing prayers.

All you have to do is hang in there the best you can.

Hugs,

Geneal

Posted by shazdancer (Member # 1436) on :

YES, merrygirl, Lyme can be this bad! And I'm sorry it is happening to you. Along with the pain, Lyme messes with our minds, so it is hard to know what to believe when some idiot doctor tells you it doesn't hurt that much.

Wrong!

I was a professional dancer for over 25 years. I was accustomed to working through achy muscles every day. I've been through strains, sprains, and a couple of broken bones. Lyme is not the "aches and pains of daily living" that the Infectious Diseases Society would have us believe. I've had aches and pains. Lyme is MUCH worse.

***
A year ago last March, an SUV ran a stop sign and destroyed my car with me in it, at about 45 miles an hour. My car was totaled. Achy and disoriented from the impact, I couldn't help but think, "This is how I felt when I was sick with Lyme." No lie, Lyme feels like getting hit with a car!
***
Last week, I had the flu. I started getting sick a week ago Thursday, and was bedridden that Saturday with 101.5 fever. On Sunday, the fever came down a bit, and I drove over 100 miles and walked about 2 miles. On Monday, I walked 6 1/2 miles. I finally felt completely well yesterday.

The flu (at least mine was) a walk in the park compared to Lyme.

Get plenty of rest. Your body is fighting very hard against a tough competitor. And don't let anybody try to convince you otherwise.

Take care,
Shaz

Posted by Cobweb (Member # 10053) on :

Hope this doesn't just make you want to tear your hair out-BUT-I could not tolerate taking DOXY-thought I was going to die. So I stopped taking it.

At my next LLMD appointment I told her how wretched I felt-and she said it was up to me to know how much I could tolerate.

I have been able to tolerate Ceftin, flagyl and IV rocephin.

Doxy and Minocycline both whacked my brain out. My LLMD does not prescribe to the point I am dysfunctional.

You sounded much more upbeat and positive before you started the Doxy-now it seems like all hell has broken lose. Some may think it's a herx-and it may be-but it may also be that Doxy is not the abx for you. My LLMD also told me that not all people herx-perhaps only about 20% herx.

In any event-I go through some discomfort, fatigue, depression, physical pain-but when it reaches the level you describe I back off and wait to consult an LLMD.

I have my limits-and when I hit a wall and can't go on-I work out another tactic to confront the enemy(lyme). We have more than one weapon in the arsenol against lyme.

Carol

Posted by Vermont_Lymie (Member # 9780) on :

Dear Merry,

Hope you are feeling better today and got some rest last night!

Yes, I want to agree with what Carol/Cobweb just said --

For some people, doxy is hard to take.

I only took doxy (200mg in the morning, 200mg with dinner) for a couple of weeks. Then, because I thought it was making me lose sleep and depressed, I switched to amoxicillin.

Personally, and I am not a doctor, I think it is better to take doxy twice day 200mg, rather than 100mg X 4 times day for two reasons.

First, your stomach has a better time to heal and you can take your probiotics (Important!). Also, you want a higher effective dose of doxy.

Herxes may not be easy early in treatment no matter what antibiotic you are taking! Even amoxy made me feel like I was going to die for a couple of days. But that passed....

People react different to drugs, so it could be that doxy does not agree with you. This is where a good doctor would work with you. Amoxicillin has helped me alot, and is also a abx used in early "acute" lyme disease.

Best of all, you have an llmd appointment in a couple of weeks. Your doctor may use IV rocephin as well.

Take good care and keep us posted!

Posted by livinlyme (Member # 3773) on :

Merrie,
Sorry to hear your plight..

and sorry to say that this does not get better!
there are no words of comfort in my honest opinion. I have found after years of being on pain management 5 years now..

that pain does not go away and it is not controled but rather controls you.. or you begin to build a tolerance to it... it does not make it go away.. you learn to deal with it..
pills and patches and such are not going to help

they will for a month or two if that but the pain will take hold of you in the end there is little help for pain.. I have been on pain patches for over a year now and they only gave me a couple of months of some relief..

then the pain builds again to the point of breaking..

then the patches stopped (thanks to no coverage) and the intense pain came and the neuropathy began again .. the patches were started again,,, seems without the neuropathy to deal with the sleep comes and the pain is easier to handle .. but it never goes away!

the best relief I can get without a perscription is getting fully immersed in a warm tub of water.. it takes the gravity off your body and allows it to relax.. of course I wish I could live in a pool.. but that wont work since I am human..
A warm epsom salt soak will help beleive it or not.. but I wish I could tell you that they will help control the pain.. it is the other way around.. the pain controls you...

sleep is most important in dealing with pain..
warm soaks will help sleep.. I find that pain meds do not help the pain only the added issues associated with the pain.. which will allow better sleep..
which will help cope.. help build tolerance to the pain..

I hope this helps..
I wish I could offer more comfort.
but there is little
Linda D

Posted by Lymetoo (Member # 743) on :

Hi Melissa. Everyone here has given you such great advice, prayers and comfort. I feel inadequate about adding anything of value here after what all these great folks have shared with you.

So I'll just say, hang in there, and go ahead and pray. The pain of Lyme can be a complete nightmare.

My LLMD says that research shows that the pain of Lyme disease can be greater than post-operative pain. I believe I can attest to that fact! Been there!

I'm doing great now, and it took many many years before I even got a diagnosis.

You're going to make it!!!

Posted by merrygirl (Member # 12041) on :

GOSH thanks so much for ALL of your kind words and all of your Wisdom.

I have slept for about 18 hours or something close. It is my escape.I still feel really bad, but I have decided to try mind over matter.

The hot showers have been the best. I wish I had a hot tub and I could stay in it all day. I am going to try the epsom salt too. You all have been giving me such great hope, prayers and advice.

I feel very connected to all of you. Thanks so much. I am sorry that all of you have suffered and still suffer. I wouldn't imagine it would be like this. I think unless it has happened to someone there is no way for someone to really know what it is like to have LYME.

I do believe in prayer. But when I called a "medical professional" I was hoping for some medical advice. I did not call my church. I think that that was the most bizzare thing (and hurtful) in a long time.

I read that benadryl may help, is this accurate? is so how much would I take?

So I have woken up with a positive attitude and thankful for what I do have and thankful for this site and folks like you. God Bless!

Melissa

Posted by merrygirl (Member # 12041) on :

Right now I take Piroxicam which is a NSAID I take once a day. It has helped me a lot. I can't take any other ibuprofen type stuff with it.

I also was given Vicodin with Tylenol in it. I try not to take it too much. I have this fear of becoming some kind of narcotic crazed person. I have been taking maybe 1-2 a day although I can take 2 tabs 4 times a day.

If I don't do something as soon as the pain gets bad, it gets out of control so I am learning the hard way to just take the vicodin or I will suffer bad.

I used to be on tramadol for pain and it was great. It made me a bit queazy at times but it was non narcotic and took away my pain at the time. I can't take it anymore because I take Zoloft and they interact.

I really liked the Tramadol. I am sad I can't take it. If you haven't used it or heard of it ask about it. It worked for me. If you have siezures you can take it, but check it out.

Posted by livinlyme (Member # 3773) on :

when you get beyond the pills they will suggest morphine.. a drip.. try to avoid this as it can tend to put some people in a mental daze..
I have been placed on duragesic.. generic.. fentanyl...

it works in the beginning but as with all your body will adjust nad it will no longer work.. the patches are changed every three days..
the pills no longer worked for me .. the patches did and as the pills they too wear off and no longer give relief..

I had been on pills for pain and injections sinec 1995 after my surgeries in 1999 and 2000 the pain was gone but then another accident put me over the edge and it has been a down hill slide since then .. I never allow steroids they cause mental psychosis lock up in the mental ward..

Be very careful how fast you promote to the patches since there is little else that they can do after that to help.. I am at a stand still as far as the next step as there is none,,. this is as good as it gets and it is not GOOD at all...

try all other things like warm soaks in the tub or a pool or a hot tub.. that is what I plan to get in the next place: a hot tub as soon as we possibly can..

chin up

Posted by bettyg (Member # 6147) on :

merry, what state do you live in so we can get LLMD names to you?

sending you a private message on another suggetion.

so sorry to read of all you/kids are going thru. [group hug]

Posted by merrygirl (Member # 12041) on :

I live in MA and a a kind person pm'd me a list and I plan to contact them today. Yesterday was slightly better and I am hopeful for today.

It has been coming in waves since I became ill one day I am very bad, the next I am a bit better, so I never know what to expect. Still have a fever though and lots of pain.

Posted by winelyme (Member # 11897) on :

Such wonderful words of comfort and advice from loving people.

I take an Epsom bath every night about 1cup and it helps me tons.

I think you said you were doing this just wanted to share my experience.

So glad you got some good sleep.......... Hang in there [Wink]

Posted by Christine T (Member # 12107) on :

This is my first time viewing this sight. I too am looking for support. Reading your story brought tears to my eyes. I don't know you, but I wanted to wrap my arms around you, cause I'd say you probably need a hug too. it encouraged me to find that others are dealing with this too. I have felt so alone and made to feel crazy. I have never felt so sick in all of my life, and the symptoms scary as all get out. There were a few nights, where I thought I was dying. It all started October of 2006 when I lost my energy and started having joint pain. I run a small farm where I give riding lessons. I have always been strong, athletic, and quite a worker. By the end of November I was spending many days in bed. By January I hired someone to take over my position, and by February I was having crippling face pain and headaches on the top of my head, disorientation, heart palpitations and pain, blurred vision, loss of balance and inability to walk unsupported. After going to many doctors, whom thought I was crazy, I finally went to a neurologist who put it all together. After listing about all of my symptoms she asked me if I had a rash anywhere on my body. I said yes, I have a quarter sized red rash on my calf. So she deducted that is probably was Lyme's. They have run several tests but yet they can't find anything in my blood. I have all of the Lyme's symptoms and have responded well to the doxy. I went on it for one month and it got me back on my feet (relatively speaking) I still have days were I am back in the bed. I went off of the doxy for two weeks and got in bad shape. This time I started having the muscle jerking. Now that I am back on the doxy, it seems to be keeping things at bay. I started taking Antronex by Standard Process for the face pain and headaches. It's working pretty good. I also take Anxiety Control by Priority One along with GABA for depression. So far so good with that. I take Echinachea and Vit C for immunity and Panax Ginseng and Drenamin for energy. There are losts of things a person can take in addition to the antibiotics. It's a matter of finding out what compliments your body. Everyone's system is different. I went to a doctor of natural medicine in addition to my regular MD.

What's really unnerving about all of this is how powerful a bacteria this is. It literally brings you to your knees and just about takes your life away. I try to do things that I normally did, but the smallest of jobs wear me completely down. From what I am reading it seems that it can take a year or so to recover from this. I feel that it is very important to tend to our immune systems and support it as well as we can. That is why I went to the natural MD. I hope I am on the right tract. I also am pursuing an infectious disease doctor. We'll see. Anyhow, that's for sharing your story. It means alot. And just remember, you've got a fellow friend thinking about you. I'll support you any way I can. Christine

Posted by merrygirl (Member # 12041) on :

Hi Christine. Thanks for your VERY kind words and your hugs. Welcome to the site. You will find a lot of nice people and A lot of info here.

Just as an FYI If you could just break up yor paragraphs a bit. It can be hard to read for some.

I do feel a bit better. I have a severe headache everyday and still have fevers and muscle spasms.

The giant Lymphnode in my arm which is about the size of a peach pit has gone down maybe 10%. So I am hopeful.

I am very weak and like you (although I am obese) I was very strong and able to lift 80 pound dogs around and work like crazy. Not anymore.

I am still dizzy and I will feel sudden urges to just go to sleep and sleep for 3 hours but the body pain is a lot less and I have not had to take the vicodin too much, just for those crazy headaches. I get waves of symptoms. It gets worse then better etc.

When I posted the original message I really did lose it after. I was hysterical and my Hubby (god bless him) had to console me, and I had to take a few meds and go to sleep.

I appreciate all of you and your support. This is one of the worse times I have gone through.

Preterm Labor at 30 weeks is first followed by Severe Post Partum Depression then Lyme.

I am glad there is a site like this where I don't feel alone, and I am provided with a lot of info. Thanks and hope you all have a good day.. Melissa

Posted by merrygirl (Member # 12041) on :

The other thing that is bothering me is that I have OCD. Really bad at times. It is a lot about germs, And all I can think about is that a gross little tick on me and feasting on me for 24+ hours.

It is making me crazy. I know there is nothing I can do about it now, but every spot I see now is a tick. every little ich it must be a bug feasting on me ...... SO GROSS. NowI am neurotic about my children and bug bites.....which is prob good but I do not need to obsess any more...