How do you do this.

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momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 2/1/2010 3:37 PM (GMT -7)   
I don't know if I can do this anymore.  I am feeling horrible. I am in terrible pain from the arthritis caused by this disease. I missed work today. That has never happened before. I feel like I am getting worse instead of better.  GI issues today. Panic attacks. All stuff I haven't had since this journey began. I just want to wake up and have a day without pain.
Kathleen
 
Doxy 300 mg/day
Zithromax 500 mg/day
Plaquenil 2x daily
teasel root tincture
 

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/1/2010 4:10 PM (GMT -7)   
Kathleen, as I've said before....I'm right there with you.

I was only able to work today because they let me work from home. My vertigo, double vision, blurry vision, nausea, etc, etc are completely OUT OF CONTROL. I have to be in a dark room with minimal noise or I feel like I'm going to upchuck.

Plus I'm in a lot of pain in my rib cage and upper back....hurts when I breathe deeply or move.

One thing that helps me is to talk to people on the Chronic Pain forum here on HealingWell. They deal with excruciating pain on a daily basis and can give you lots of tips on how to get through it without losing your mind. They are a good bunch of people, just like everyone here on the Lyme forum.

Does ice help? Or heat? Can you take a long hot bath? Do you have pain meds? Will your doctor prescribe a different med if your current meds aren't working on the pain?

I wish I could be of more help!!

Sending prayers and ((((hugs)))) your way......
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 2/1/2010 4:38 PM (GMT -7)   
Thanks JoAnn,
 
I feel like I am going crazy. Usually, I deal with just the knee pain. Ice helps but it is frustrating not being able to tale a step without pain.
The newest symptoms might be the plaquenil. I am adding kaprex as soon as it arrives.
 
I can handle the pain in my knees better than I can deal with the nausea and GI issues.
 
I have plenty of remedy meds...percocet, tramamdol, phenergan...I just want to be normal or at least see a light at the end of the tunnel.
 
Thanks for the response.
 
Kathleen

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 2/1/2010 4:57 PM (GMT -7)   
I'm afraid to let work know I'm still sick (four years later).
 
Gee - Sorry I forgot so and so's name - I have brain fog. Where's my desk again? Right, I've been here for nine years and all of a sudden I forgot how to answer the phone.
You have brain fog? Maybe you shouldn't be working if your brain isn't working so great.
But I need this job - I need the insurance - I live by myself.
 
I just keep taking meds. If something makes me herx too bad, I stop taking it and take something that just keeps me functional. I've been breaking out in lesions - that's really depressing. I just wish my headache would stop. I felt great last month - what the heck is going on? I hate this disease. I hate what it does to you, I hate what it does to me.
 
Victoria (who is still at work)

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/1/2010 5:31 PM (GMT -7)   
Hey everyone,

I'm so sorry you all are suffering so bad. I've definitely been there more than once and feel terrible for the ones who have to work. This is just a suggestion, but try doing more detox baths and see if it helps with the pain, anxiety, etc.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/1/2010 6:42 PM (GMT -7)   
Don't know if it will help but have to share what seems to be helping me.  I have cut out sugar and starting taking lithium orotate and Q10.  The anxiety is the best it has been in literally 4 years.  I feel better too.  I had no idea I was having sugar problems (which is apparently common in lyme - I was undiagnosed for 4 years despite my valiant effort to get docs to listen to me) as one dr. did do glucose testing but from what I understand you can test fine unless you have the more definitive test where you drink the sugary liquid.  Lithium orotate is supposed to help with lyme toxins and the brain, Q10 for the heart.  My heart palps have all but stopped and my head pressure is gone.  I shall see if it continues but perhaps a simple enough thing to try.  FEEL BETTER!!!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/1/2010 7:05 PM (GMT -7)   
springsjean,

Thanks for that info. Regarding your glucose levels....you need to have a four hour glucose test done and most doctors, for some unknown reason, do not do this test anymore. My regular blood tests were normal but when I did the four hour glucose test, I nearly passed out and my glocose level was extremely low. Sometimes, your low/high levels are food induced.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 2/1/2010 8:48 PM (GMT -7)   
my heart goes out to all of you, and especially to victoria cuz i can associate with her. i live alone. i need to have to work to need insurance. and to buy meds, and i need work to even be present in the country where lyme *can* be treated.

today in 70F, with 3 layers, i was still in chill, and no fever. and today at work i had sweating armpits profusely. no brain fog yet. no GI yet. but who knows whats coming next. i still don't know what it's like to be herx or may be i've been herxing just have no idea. with every passing day i want to introduce new symptoms and sometimes take away the old symptoms, only to realize, they come back with new ones attached.

Nasalady:
if you have lyme, i'd DISCONTINUE prednisone RIGHT NOW! don't do this to yourself but again ask your doc why he has put you on it in the first place.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/1/2010 11:28 PM (GMT -7)   
pepphell,

Just so you know, you cannot just stop taking steroids. It is very dangerous. Usually, one has to wean themselves off. Nasalady is taking it because she has auto immune problems so it is very important for her to be on them right now.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 2/1/2010 11:51 PM (GMT -7)   
The anxiety is a common herx effect.

Just one thought - do you work for a large enough company that you have FMLA (family leave). If so, an intermittent family leave might be a big help in managing those bad days. Your HR dept. can answer questions about FMLA. There will be a form for your Dr to fill out.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/2/2010 5:51 AM (GMT -7)   
Cajungirl, yes my anxiety/rage/heart palps definitely triggered by food. Have you been found to have insulin resistance or hypoglycemia? I am going to insist on 4 hour glucose test. I'm not sure this dr. is a lyme expert but he does seem to listen to me and hear out my research results. LOL. Thanks so much.

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 2/2/2010 6:29 AM (GMT -7)   
If I had the choice between the knee pain and the nausea/panic/GI stuff... I would take the knee pain. Luckily where I work, my hours are flexible. I will go in for a bit on Sat to make up for yesterday.
 
I am exhausted. I feel like this battle is hopeless. I stopped the plaquenil last night as I think that is what is causing the latest symptoms. I cannot get another knee injection until March so I will have to deal with the pain until then. Ice does help. I go through epsom salts like crazy. Wish they sold bigger containers.
 
Thanks for all the input. I certainly don't feel alone when I am here.
 
Kathleen

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/2/2010 8:24 AM (GMT -7)   
How about vitamin D?  Have you tried increasing that?  It has been shown that vitamin D helps the body deal with pain. 

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 2/2/2010 12:51 PM (GMT -7)   
Can you use regular vitamin D from a drugstore?
 
Victoria

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/2/2010 1:27 PM (GMT -7)   
Absolutely.  Do some research about vitamin D and managing pain.  Mine was tested and found to be low. 

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 2/2/2010 4:37 PM (GMT -7)   
vicparis said...
Can you use regular vitamin D from a drugstore?


Victoria


Well, it's important that you get the vitamin D3, not just any vitamin D. Have you been tested for this yet?

Gary

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 2/2/2010 8:54 PM (GMT -7)   
I take 6000 mg of Vit D3 per day. I stopped the plaquenil and feel better. THe pain is worse but I am not fuzzy and nauseated. I ordered Kaprex and should be able to start it by the weekend. Hoping for some improvement.
 
Kathleen

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/3/2010 1:25 AM (GMT -7)   
It is best to have your Vitamin D tested by a doctor, that way, you know how much Vitamin D you need. Vitamin D-3 is best to take.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/3/2010 1:26 AM (GMT -7)   
Springsjean,

I was never told that I was insualin resistant. I was diagnosed with hypoglycemia.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 2/3/2010 3:20 PM (GMT -7)   
I don't know if I've been tested. I can ask when I go next month. I'm gonna be in trouble because I didn't follow through with my lab stuff from two months ago. The lab used to be so convenient - just upstairs from my LLMD - then they moved down the street. I always go on my lunch break. I take the bus and then walk back to the office through China Town (I work in downtown SF). She's really good about testing - I'm just really bad about remembering.
 
Victoria

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/3/2010 3:58 PM (GMT -7)   
ok thanks. Really strange that what I am eating is controllling how I am feeling. Any sugar at all and the heart races, palps, shaky, anxiety, etc.
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