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Lyme Disease Community
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537731 tn?1268268886

First round of antibiotics For Lyme Not working IN FLARE

Hi, I am taking Plaquenil 200 mg one tab twice day,Flagyl 500mg 2 x daily, azithromycin 500 mgs 2 x daily, compazine for nauseau,B12 injection once weekly, Amrix. Oxycodone 6 daily 10mg, Motrin 600 mg, Volatran Gel,Xanax but i am not taking. I also have a serious thryroid issue i believe and is not being addressed from childhood.
114 lbs cant gain weight 5'9
I need help- i cant find a good lyme Dr in my area. I have googled and yahooed.I suffered since a kid with this and just getting diagnosed. I am now 32. I think irreparable damage is and has been done to my muscles and bones and the Dr's dont even know it. My Dr is old fashioned and has Lyme so I am so grateful he gave me a name to this horrible way of life. I cant do much of anything and have no idea where to start with this. If this keeps up i wont be able to move. I tested positive for Burgdorfer(compassionate dr sat down next to me and hugged me when he told me i had Lyme and that usually people only test positive for one out 3 tests and i tested positive for 2 whatever that means. I have to find my paper.I need 2 other tests which my insurance wont cover.
In the last month
I was in er 2 weeks ago because muscles knotted up so bad by day 3 i had to hold my head to my side and hold leg up to chest to give some on the pull. Then my grandfather Died, Then My Daughter got bit by tick!
Next week had Hysterectomy (90% endometriosis)only cause pain was unbearable and if I could have a kid i wouldnt want to spread it to them when my 10 yr might have it also.-Next week- 1st day i feel better with my belly Lyme Flares
Been awake since2pm Mon
Mon rt hip started hurting pain in butt and middle bone hurts and feels hollow-muscle stays knotted goes down my leg.
Had b12 injection
then my fingers start to act up and need popped to work right, then my neck stiffens which mean it wont pop either.(Every Joint I have i pops when i move around and then several times must pop loud to relief muscle and pain.
I cant sleep and cant eat- i managed a bowl of cereal.
Tues 4 am
Rt lower back pain
6am-sat on bed and electric shock went down my opposite side that was hurting. I have had these in my head and it scares the **** out of me feels like someone put a tens unit on high on ur head or down the side.
1:41pm had boyfriend massage me, tried volatran gel just gets worse.
1:45pm Rt shoulder jerk
2:00 noticed i have white pimple on eyelash
notice my lips are completley chapped- my rt side hurts so bad i try and excercise leg and know if it will pop i can get short relief. Now my hip joint does make small pop any time i extend leg but i need a big pop
5pm All day any time i stand i feel so much pressure in my head then i feel as if i will pass out but i dont. Happened at least 6 times today.
8:05pm got in my Jacuzzi Bath which is the best treatment i have. I get water as hot as i can stand, Lay under water and start popping-take some deep breaths and Pure Bliss with the exception hip joint didnt pop.
9:22pm  got up and put my daughter to bed laid back down and i feel warm and like my heart is going to beat out of my chest. I checked my pulse was 92-started feeling tightness in chest which.
If this muscle thing hits the front or my heart what would happen I am scared and dont thing these meds are helping. I took Doxycline for a week but Dr took me off cause they made me sick. I know the difference with that when i slept i had horrible nightmares and poured sweat.
Now i feel horrible just made myself eat peanut butter and jelly sandwhich and glass of milk. I am new to Lyme Disease as in finding out what it is and am scared and could use help on any of what i have said or info u have. Also need to find support group at least 50 miles fromm friendsville pa Thanks and sorry is so long but i wrote everything so i could get the best advice on whats going on.
6 Responses
280418 tn?1306329510
Wow, welcome and I hope we can at least be of some support.  I am myself feeling crappy today, so I have to make this short, but will watch your posts.  In a nutshell, you need to get to an LLMD if possible.  I know your doc understands, but is he an LLMD?  

You have other medical issues that may be worsened or just in addition to Lyme.  If you can't keep weight on, that is a serious prob.  I couldn't keep weight on when i was having anxiety and panic attacks - I also couldn't sleep and hated to eat.  

My lips stay chapped and I still struggle with insomnia.  But, I cannot stand a hot bath, so that is where we are different.  I take Doxy and I don't really think it's doing anything.  I'm going back to my LLMD in Dec., so he will be putting me on more abx.  

A person in my support group described constant feelings of passing out, but she didn't.  Not unusual.  The heart pounding, insomnia, chest tightness,e tc sure smacks of anxiety, which is a byproduct of Lyme as well.  Get yourself seen by a shrink if possible, a must have for a Lymie in my opinion.  I am really tired right now, so forgive me if I don't make sense.  You take care and I will try to keep in touch.  The people on this forum are very supportive and kind, so you are in the right place.

Hope
Avatar universal
Hi,  to find an LLMD go to lyment dot org and look in the "seeking a dr" forum.   God bless you.
666921 tn?1254994218
lyme spirochetes - bacteria - seem to like soft tissue - collagen, etc; - you really do need to find an 'LLMD' - in my opinion [not qualified - other than having lyme] - you need to start antibiotics - Doxycycline can be 'harsh' on our systems - there are alternative abx. but it seems - if you can tolerate doxy. - it helps a lot of lymies.

If I were you I would do my best to find an LLMD. and also try talking to my doctor about atleast getting started on some abx.

maybe the hot baths helps your anxiety - being more relaxed will loosen things up and get the blood circulating more efficiently - all through my own lyme -I have found the more I can relax the less intense my symptoms are - it is easier said than done to relax when there is a lot of stress/worries in your life.  I have been amazed at times - how much better I have felt - pain wise - just through working on relaxation - the hot bath is a good place to start - deep breathing and mind clearing is good too.  If you can 'persuade' someone to give you a 'gentle' massage after a bath - you may find that helps too - try using massage oil containing - rosemary, eucalyptus and lavender - I buy one ready mixed - it is for muscle & joints - it would be worth you trying to find something similar.

I know the baths and massage isn't the answer but it can give some immediate relief.

Anxiety is a part of lyme - when we are anxious we are tense - stressed - so the body can not function as it should which obviously affects our different body systems - immune system included.

Best wishes - keep us posted

Gorbs xx



666921 tn?1254994218
Hi, apologies for previous post concerning abx.  when I first read your post I presumed your meds. were for anxiety and pain.

There are so many different names/drugs - I am in U.K. and I guess there are alternative names for the same stuff here!

Best Wishes - Gorbs.xx
428506 tn?1296560999
Hi lensbek,

I am sorry that you are going through so much pain with your illness for so long.

Please don't give up and continue to seek a doctor who can help you.  Your symptoms could all be from Lyme and co-infections, and if that is your root cause, keep in mind that people come back from horrible situations and return to normal lives.  Even if you have other conditions complicating the picture, it certainly sounds like you are undertreated at this time.

Also, though it's difficult to endure or understand, people who've had Lyme for a long time before treatment often get more sick on antibiotics before they get better.  This is do to Herxheimer reactions.  Basically, one the antibiotics start killing the bacteria, the die off in your system makes you sick.  It sounds crazy, but I've gone through this during my 11 months of treatment.  With time, the Herx's become less severe and last for less time, but it can be a real struggle to get through.

Keep us posted, even if just to vent.  This disease can be lonely and maddening, but we're here to help as much as we can with that.

Take care.
Avatar universal
I just googled "LLMD Binghamton NY" which looks on the map like it is close to you.

Several items popped up that may help you find an LLMD if you still are looking for one -- the 'hits' I got in google lead to specific Lyme-oriented websites that often have messages or posts or a private message board where you can get leads to an LLMD in your area.  

You can find support groups the same way, but finding an LLMD is the first thing to do.  
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