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Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/4/2009 6:43 PM (GMT -6)   
Everything hurts. Joints in my fingers that haven't hurt for four months are killing again. I started new meds a week ago. Joints that never hurt are hurting now.

Question...
Do any of you second guess your diagnosis when you get really sick of dealing with it? This is a first for me. I think I have just had it after 8 months of treatment. Starting to wonder if maybe I have RA or something and that is why I am not getting better.

Then again do people with RA have herx reactions which I definitly have? And my ana,sed rate, crp and rf were all negative.

Anyone else just get tired and think "what if it is something else?"

Not enjoying these new meds and starting to lose hope.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/4/2009 7:44 PM (GMT -6)   
Lovelabs,

I second guess myself all the time. In fact, I just told my husband today that I hope I don't have MS because of the downward spiral I've been on. But, I know in the back of my head that I've herxed every time I've been on antibiotics.

Sometimes I think, what if the antibiotics are giving me this side affect? I drive myself crazy!

I guess if I had a positive test, I wouldn't be this way.

I guess I didn't help much huh? LOL
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/4/2009 7:57 PM (GMT -6)   
Lovelabs,

I had a doctor test me for RA recently, and he said that diagnosing RA is usually very straight forward. The blood tests (all the ones you mentioned) are pretty accurate, and there are certain things (nodules, and things docs can see in xrays) that are common to nearly all RA patients.

That being said- I can also tell you that I second guess myself all the time. When the symptoms and information on the disease is so fuzzy, I think it's impossible not to.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/4/2009 9:28 PM (GMT -6)   
Thanks you guys. I am just having a very bad week. If it was the beginning of my treatment I probably wouldn't be freaking out so much. But I have been at this awhile and just getting discouraged.

The RA thing is on my mind. My knuckles and joints that haven't hurt in 4 months are killing again. I just started the new meds last week it is just frustrating. This is the first time since I started treatment that I feel I am not going to get better.

Nicky thank you for making me feel better about the RA thing. You think something in all of those tests would have been elevated. I guess because my knuckles hurt on one hand I am assuming this is what I have.

I am sorry for being debbie the downer(remember...sat night live?) but I am getting discouraged,paranoid, you name it. Just plain sick of it. And if one more person says "you look great" or "well you wouldn't know you were sick".....I am going to scream!!!!!

I mean I don't wish this on anyone believe me but for just 2 minutes I would love for my friends to feel the pain I am in. Just so they will understand and shut up with all of the stupid remarks.

2 years ago this month, a stupid little tick changed my life.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/4/2009 9:33 PM (GMT -6)   
And CG-
I think we r thinking the same. I tested neg too by CDC & igenex.(3pos bands, 2 ind)

Keep trying to remind myself other diseases wouldn't make you herx right?

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/4/2009 10:14 PM (GMT -6)   
LoveLabs, i have had at least 6 RD test run in the last 2 yrs and all show negitive. and i do have the nodules in some of my joints. i was given Bcomplx to take and it seems to help somewhat. did they check your B lvls? you can use the Bcomplx sold OTC. its what i am doing cause i couldnt aford the script ones he ordered for me. 68 bucks v 10 bucks. hmm i did the math.LOL.

i guess i would 2nd guess this if it wasnt for going thro every test in the book and no answers, till i was given the WB test and it shows positive for IgM. so i have my answers but my Drs are still looking for them. go figure.
 
P.S. i also wanted to tell you. I made up some T-shirts. hot pink with Lyme green letters. says I Have Lyme, Ask Me about It !
 
this is for the folks who do not know or understand lyme. and i hope it helps someone so they never have to go thro what we do daily. the more info we can get out there the better off we will be.
 
¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
 


   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)

Post Edited (RottenDog) : 8/4/2009 10:18:54 PM (GMT-6)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/4/2009 10:31 PM (GMT -6)   
RD-
Wow! Love your tshirts!!!! Can't get more direct than that. How wonderful to do that in hopes that you will help someone.

So you think you can have the nodules with Lyme? I guess why not if we get arthritis from it right?

Isn't this disease SO frustrating. It's like I try to concentrate on other things but my mind races constantly ....lyme lyme Lyme. I can't shut it off.

And by the way, did you get your test result back from your spinal tap? Thinking of you and way to go with those tshirts!!!!

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/5/2009 1:35 AM (GMT -6)   
no i still have not heard from my nuero about the test he ran. and to top it off the program i am on was up on the 31st of last month. and i am waiting for them to give me my appointment date to renew it. so i cant even see a Dr. till then. if they do not renew it them i will just have to sit and rot as i have no other means right now.

i hate lyme. and am strating to hate Drs. its as tho they have blinders on and cant seem to want or care about something that destorys ones life. or not till it hit home for them. thats the sadest part of it to me.

as for the T-shirts they are easy to make up. i went to Michiels and bought the letters (iron on) then i bought the color shirts and wola.LOL i got a Lyme green shirt and black letters for my b/f. and it says Lyme, Ask Me about It!!
they do not have "lime green" but the apple green is very close to it.

i understand about the frustions, and the inablity to concentrate. even tho i have a new litter of puppies to keep up with. and boy is it a ton of work. its always there in your face. just trying to sit in the floor to make sure they all get there time to nurice is so painfull. then i have to change there badding 2 times a day. that leads to more washing and drying for me. ugggg

then i have to think about the training for the one i plan on keeping. he like his father will go thro training to help me. my bloe boy can open doors and will braice for me when i am on the floor to help me stand. if i walk on steps without hand rails he is my railing.i also tought blue to bush the buttons for handycaped doors and eleavaters.

so i think will i be able to do all this. its a never ending battle for all of us. one i wouldnt wish on anyone.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/5/2009 5:37 AM (GMT -6)   
RD-
I know how you feel about doctors. I have had so many be rude to me at the start of all of this. I even see one out at this coffee shop I go to sometimes. I just about puke when I see his face. I can't even look at him. I am so hoping that something positive comes out of that review hearing. I was looking over some of the ILADS presentations and wow...how can anyone dispute their findings? I was really sick on Thursday so I wanted to watch with a clear head. I am even more impressed now.

Boy you must be busy with those pups! What breed are they? Love what you're teaching them! I have a lab. I like my dog better than most people. That is the truth.

You know before I got into seeing my doc I did go to an ND. He wasn't expensive and gave me cats claw and some other anti inflamitory supplements. They helped a little. I found he was so open minded compared to the docs I had seen up to that point. Have you considered this? Sometimes you can get a good referral just from workers at your local health food store like a whole foods or something. Don't give up I know there is someone out there who can help you. I know it is hard to find the energy to look.

MosinNagantLover
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 8/5/2009 9:40 AM (GMT -6)   
One of the first tests my dr ran was for RA. I've been tested before as I have a history of Rheumatic Fever and Rheumatic arthritis/arthralgia. The test came back negative. I have lived with intermittent joint pain most of my adult life but the joint pain I have from Lyme is a different quality.
I'm reading up on diet now and how it can affect herxing and joint pain. I'm just coming off a couple of rough days of it and I can probably trace it to what I was eating while herxing from my latest round of antibiotics. I've also been pushing water like a mad woman and can say that today, I feel better than I did yesterday. I'm sorry I didn't explore diet before now.

This is just such a complex disease. Every day I'm learning something new about it.

Any feedback from users of cats claw would be greatly appreciated. Does it really work?
Life is what happens while you make other plans. The late great John Lennon


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/5/2009 9:57 AM (GMT -6)   
Hey Mosin,

I agree that this disease is something else. about the cats claw...there are a few that take it here. Why don't you start a new post so others can see it. You will get some good information that way:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/5/2009 10:03 AM (GMT -6)   
Lovelabs,

I'm wondering if you aren't experiencing more die off that the first round of antibiotics didn't get? Sometimes the bacteria run and hide and the antibiotics can't get to them and when you switch antibiotics, the new antibiotic seems to pull them out. Also, when they hide and go into cyst form, the pain can deminish some. I think that's what happened to me last year and why I was feeling so much better.

You are very strong hun. I'm definitely not as strong as you. You keep killing those nasty bugs off! You're doing great and you willcome out of this feeling better.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 8/5/2009 10:03 AM (GMT -6)   
I don't doubt myself as much as I do the doctors. I don't trust any of them any more. When I got tendontis from levaquin, my primary care doctor said it was probably arthritis which infuriated me. I told him arthritis does not make your whole arm snap when you reach for the vacuum cleaner! My llmd told me the pain I was experiencing because of the levaquin was a herx and to keep taking it. A week later - snap~
So I believe it is a good thing to second guess what is going on. The llmd did tell me that quercetin will help reduce cytokin production which causes inflammation. You might try that to see if it helps. You can also cut back a little bit on your abx to a more tolerable place. The full moon is tonight and that corresponds with my 28 day cycle. I have heard a lot of people herx at this time. Hope you begin to feel better soon.

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/5/2009 10:34 AM (GMT -6)   
Are your joints swollen and warm/hot to touch? Is the pain bilateral? The fact that your RF, ANA and CRP and Sed rate were negative, as mine were, leads me to believe it is a herx reaction. I can have joint pain so bad at times that I limp. However, there is rarely any swelling or heat/redness with it. It also moves around. I can have pain in my left elbow and my right hip one day and in one of my knees the next. I know mine is Lyme and could definitely tell an increase in pain, when my Abx. dose was increased. I hope you start to feel better soon. All the best.

Heather

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/5/2009 11:44 AM (GMT -6)   
I don't have any redness. The only swelling I have is on one of my fingers. I only can notice it. It is not red or hot either. My pain travels all over. Not like both knees at once. The only thing that hurts together is my heels. They kill. I know in my heart it is Lyme but if this is a herx it is the worst I have had. My last treatment I had periods where I felt almost normal. This is brutal. It is like something exploded inside me. Can plaq/biaxin react like this one week into it? What will the cycle be like in a couple weeks? I'm afraid to think about it.

I am just so tired of hurting. I could cry just thinking about it. But have to plug along I have kids that need their mom. Thanks for all the replies.

Oh and I did herx on the cats claw. Lot of detox baths.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/5/2009 12:18 PM (GMT -6)   
Lovelabs,

I get the swelling in my knuckles too. It's just on my right hand and it's usually my middle finger, my thumb and my pinky. It's never red or hot. It just hurts. It feels stiff and painful when I bend them.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/5/2009 1:05 PM (GMT -6)   
Lovelabs,

I'm not sure what's going on but you just had two duplicate posts that I deleted. Very weird:/
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/5/2009 2:01 PM (GMT -6)   
Lovelabs,
It definitely sounds like you are herxing. I do not think it is RA, by your symptoms and test results. I am so sorry that you are in such pain. I totally get having to "be a mom." Unfortunately, we cannot lay around all day to recoup. My son is an early riser. He has been since birth. Not much has changed in 9 years, lol. I hope someone can chime in about your Abx. questions. I myself have not been on them. Though my LLMD said he will be adding Biaxin to the mix after my new labs get back this week. I would think being a week into the new meds, you are definitely stirring stuff up. I just hope it starts to let up soon.

Heather

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/5/2009 3:35 PM (GMT -6)   
LoveLabs. i have rottweilers. they are so versitrel you can teach them almost anything.
today i am very depressed. just the thought of not getting the right treatment is messing with my mind. i know i can die from lyme if its not addressed. i am at a point now that i have 2 options open to me. 1 is to beg for help, witch is something i have never done b4. and the other is to just give up and what will be will be. and this is not like me either.

i have always been a fighter. and i have always stood up for my rights or the rights for others. but i have fought for 3 months now to no avail. this forum is my only relief.

i hope you find relief soon. and wish you a pain free life soon :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/5/2009 8:50 PM (GMT -6)   
RD-
I think think you should try some natural remedies. When I had the door shut in my face from doctors last year I had to wait 4 months to get into my doc. That ND was very helpful. Not expensive like an LLMD and he really knew his stuff. He put me on like 4 different things. Cats claw being one of them and I found it probably didn't get rid of it obviously but it kept it from getting worse. I think you should consider this. It may really help you! I don't want you to give up. I don't want any of us to give up. This thing sucks. But as much as we hurt we need to keep trying. I wish I could help. Please know that I am thinking of you.

By the way, I love rotteweillers they are the cutest...wish I had a litter of pups to play with!
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