Topic: I am sorry, but I really need help to get through this.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I just don't get why I am still sick after a year and a half. I talk to others who saw my doctor and they are almost completely recovered by this time.
I came home last night not able to function.
I went to the YMCA thinking I could work out, then the pain got worse, throbbinh, stabbing toothache like pains in my left arm, burning, painful feet, so I left the gym with my head down. I sat in the car and cried for about an hour and them punch the steering wheel yelling I hate you. Not sure I was talking about myself or the disease. I sat there contemplating suicide.
Cam home and did little to nothing.
I took two Tylenol PM and one Unisom plus Melatonin and still only got 4 hours of sleep. I am really losing sleep and not getting any exercise these day.
I really am ready to pack it in, lay in bed and die....at 39 years old. Seems crazy since I thought I would live to 100 in good health considering how I always took great care of myself.
-Rich
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Rich,
It will get better. It took me almost 2.5 years to hit the turning point.
I've been working two full time jobs lately and haven't been here.
Just hang in there.
That is all you have to do. One day at a time.
It will get better. I promise.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Rich...it took me a long time to figure out I needed to allow my body to rest and heal.
Allow yourself to rest. Breath in. Breath out.
it will get better.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Thank you for your honesty. I have had so many days where all I can do is sit here and cry.
I am sorry you are going through this but you are not alone. You WILL get through this and you WILL get better. Believe.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Rich~ I totally understand as I was a serious athlete prior to getting ill.
I'm assuming you've had all the "usual" tests run...everything your doctors can think of..thyroid, B12, Vit D, CBC, CMET, UA and all other tests...
If those are normal, then you can start looking other places...and it seems you have chosen to look at the infectious pathogen route, specifically lyme. If you've seen no improvements from those antibiotics, then maybe you need to check into other pathogens.
Do a search using my member number and "viral testing" and you'll come up with some posts. You could be sick with viral pathogens and not bacterial pathogens. They give the same symptoms as lyme.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Rich,
I understand your frustration and sadness completely. When ones former life revolved around fitness and good health (mine did too)this illness is a very difficult thing to cope with.
Wondering, how did this healthy body betray me? It is a huge adjustment to have to make.
We just have to choose to live with the hope that we will regain some or most of that former life...and work with that...work towards that goal.
Not easy, but entirely POSSIBLE. For now, giving thanks for what we do have is the best that we can do.
PS your fitness and health habits prior to getting bombarded with this disease are surely helping in some way to bring you back to wellness.
Stay strong! Happy Thanksgiving!
Posts: 3975 | From usa | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Rich does your YMCA have a small heated instructional pool? Last Jan I decided I've got to do something in the way of exercise.
Join Y and thought I'd do beginners/gentle yoga. After 3 sessions, I realized wasn't ready for that. Now what????
Another Y close by had Arthritic classes in s heated pool. I've been doing this every since and I love it.
I started out one hour one day a week. Worked up to 2 days. In the last month I've started 3 days.
Now I'm a pretty young chick (52) compared to most in my class. lol
What this has done for my pain level, mental outlook, endurance, flexibility, range etc is amazing.
Someday I hope to move on to yoga, all the equipment/machines. But I'm loving how far I've come.
One tiny step at a time.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
richie, I completely understand how you feel. I have been at this for 2 years.
A few times I have thought it would be so much easier to just take a handful of something and let my heart stop. But I didn't do it. We have to all believe there is an end to this nightmare.
It's a terrible disease but we are right there with you. One day, sometimes one half day at a time.
posted
Richie...once again, please list your doses and meds...the dosing is important. If it has been too low...that could be a main reason. Also, PM me the name of your LLMD.
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joalo
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posted
How long were you sick before you started lyme treatment?
Getting a good nights sleep was the most important element for me to start to feel better.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
Rich, I have been on agresive abx treatment for a year. Still feel miserable, and going trough hell but...I try to live one day at time but look at my progress in bigger blocks of time.
I am not as desperate as I was a year ago, and not as miserable as I was six months ago.
WOW improvement from desperate to miserable
Posts: 191 | From va | Registered: Sep 2008
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Vermont_Lymie
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Member # 9780
posted
Hang in there, you will get better. Like Geneal, it took me over 2 years of treatment to really get better.
I am not around here much these days because I am back to working fulltime.
If you are on mepron, that can cause serious blues in some people. So these feelings may be made worse by treatment -- though that is not to say that treatment is not effective. Just that it might take time to go through treatment and see the positive effects once you finish. Babs treatment was very difficult for me.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Our problem (mine too) is that we're attached to the idea that our life should be one way, when all the evidence points to something different. Lay down your expectations for your day-to-day health, try to change the conversation in your head and you'll find a better outlook. Dunno what you're doing for emotional support (therapy, meds, spiritual practice) but it helps. Finding a support group does too. Doesn't necessarily have to be Lyme specific.
FWIW, I'm only speaking from my own experience in wrestling with my own expectations. I'm an endurance athlete so I know all about attachment to results and expectations of my body.
PM me off this board if you want to talk more.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
Hmm one of the possible reasons people feel so bad is that they have bad detox capabilities, there is labcorp HLA DR/DQ test for that
If you do have detox problems seems you have to do extra to get well (didn't research much in that area since my test came out ok)
Posts: 856 | From MA | Registered: Jul 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
So sorry you feel so bad right now.
I can relate, althoguh I've onlt been treating about 8 months.
I was on Doxy and Rifampin and was feeling better, although my eyesight suddenly went downhill.
My LLMD switched me from Doxy to Amoxyl, and I started feeling worsse again, so he now switched me back to Doxy.
It's been a couple weeks back on the Doxy and I still feel crappy.
In fact in the past few days I have started feeling as crappy as I felt before I started treating.
I'm back to feeling like I'm haivng a heart attack or a blood clot in my lung or something, and I haven't felt this bad for a few months.
It is frustrating, but I keep holding on to everyone's assurances that it gets better.
I hope things get better for you. Hang in there.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Rich,
One thing that has really helped my husband recently is taking Lunesta. He tried Ambien and some other sleep meds which just didn't work for him. With this disease, often Tylenol PM or Unisom is just not enough. You need something stronger right now to get through this rough period.
I also agree with Wildcondor. You either may need stronger meds or possibly you are not on the right protocol. Is there one protocol that helped more than the others? Another option is to try rife. My husband and I are looking into adding that, along with the abx.
What are you doing for detox? Have you considered Far infrared saunas? We are also looking into that.
Hope you see some improvement soon. It will get better...just hang in there.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Pinelady
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Member # 18524
posted
It looks like you hit all the bases with the meds.
Maybe you have a virus also? I hate this too. The
worst part is having the want to and can't. Maybe
it would help to look back and see what progress
you have made. I do that everyday and it gives me hope.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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richedie
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Member # 14689
posted
It doesn't make sense though. My arm doesn't wax and wane any longer....it just gets worse and worse and worse. I now, no longer use the arm. I might just throw it in a sling. IT think a sports medicine doctor will laugh at me if I tell him I have Lyme and this is a result.
I now have throbbing, stabbing pains from elbow to hand, I can't raise my arm or put on a jacket.
I have the trigger point book and have been seeing a chiropractor and trigger point speciaist but they are not very positive about it.
One thing I had ulnar entrapment surgery on this elbow two years ago.....shortly after that I started having wrist pain......1.5 years later the arm has progressed to current state.
My doc did not mention viruses.
Right now I take: 1.5 tsp of mepron 500 mg tabs Ceftin - 2 tabs twice a day 500 mg tabs Biaxin - 2 tabs twice a day
Some of you asked about my doc but your inbox is full.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
richedie I was to the point I could not wipe my own
tail. I backed off meds and my arms are so much
better. You may need to switch meds for a while or
back off. I am not advocating you do anything
without doctors orders. I am just saying what I
did to help me. I also am doing up to now 1000 E.
And that is helping also. It could be the
ligaments and tendons and bones are going through
a metamorphosis as it seems they have lost their collagen, and it remains to be proven.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I don't want to say anything negative about your llmd...I'm sure that your treatment up til now has been very good.
Just saying that maybe it's time to have a new set of eyes look at your symptoms. If you are already traveling to Maryland, maybe you would consider Dr. J. in DC (the wonderful doc from UOS that just moved there).
You may get lucky if he has seen other patients with your problem. Sometimes I think that is our best hope of getting better...to find a doc that has successfully treated other patients with issues similar to our own.
Posts: 345 | From East Coast | Registered: Apr 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Am I taking enough meds????? I was thinking of trying a well known doc in PA but don't know. I can't stand the fact that I can barely use my left arm. Why is the pain so relentless and stays in one place!?
I was told I could not take supplemental E untill off Mepron.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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I don't have the expertise to say whether or not you are on enough meds (or the right meds). That's why I think a second opinion from another llmd (and possibly switching to someone new) might be what you need at this point.
Posts: 345 | From East Coast | Registered: Apr 2008
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richedie
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Member # 14689
posted
I don't think I can afford the cost of a switch in docs. The initial visit is expensive.
I might put my arm in a sling because I can barely support trhe weight of my arm without pain.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Pinelady
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Member # 18524
posted
I used a rolled up blanket under my elbow to prop
it up to sleep on left side. Can't on right side at
all. But I have even thought if it got worse I may
have to go to recliner, but it has gotten better.
The doc wanted me to see my reg doc for it but I
refused after what he did to me. So that may be
an option.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Today I really feel there is no way out but suicide. I can't live like this.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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btmb03
Unregistered
posted
richedie - I feel for you, I can only imagine your suffering right now.
A quick comment on your meds - others may disagree but 2000 mg each of Biaxin and Ceftin are quite high. I don't think we need to blast our bodies into oblivion with such high doses even if our docs say so.
I haven't read all the posts, I'm wondering if your doc would agree to dosing down on those two..perhaps enough to give you some level of functionality?? Just a thought, please hang in there!! Gentle hugs!
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posted
No, Rich it is not the only way out. It may look like it right now but think of your family if not yourself.
I'm sure we've all thought along those lines at times. I know I have but it is not the answer.
Right now it looks like you will never be better but you can. I know I thought I would never be better but I am. I'm in a bad place right now but I know it will get better for me and for you.
You just can't give up trying. This is the hardest fight any of us have ever fought I'm sure. It can be won though but you just have to keep looking and keep fighting the fight. Never give up.
We are all here for you.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Maybe it is 500mg twice a day...I have to double check.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I am in such intractable nerve pain that I often consider suicide. You have to remember that this is not forever: think about all the people on this board who have gotten well - maybe it' taken some of them years, but there are people in your life who need you, even if you're having a hard time coping with the process. I have two kids whose lives would be devastated if I took the suicide route, and every time I get really close to feeling I can't stand it - like right now - I look at their pictures. Get out your pictures. Pam
Posts: 360 | From New York | Registered: Oct 2009
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posted
Richedie, please hang on. I tried that route and wasn't successful, thank god. Just take one day at a time. I think about death too (alot), but try to find strength to live each day. You will get past this!
Times can be very difficult, for sure. I would suppose that most people that have had this problem have had a level of suicidal ideation. This problem sucks. I can only say this, at the very worst of my symptoms, ringing ears, chronic searing headaches, joint pain, cognitive difficulty, etc, etc, every time I told my LLMD about how severe the symptoms are he'd say, "that sounds like Lyme getting killed off." Think of your pain and anxiety that way, you're killing Lyme. Of course you're getting worse, for now.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
it took me a very long time before I felt better. and when I started to feel better it seemed to be like a switch. I was on IV antibiotic therapy for a very long time.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
richedie,
I am so sorry that you are feeling so bad.
Many people have been in the same exact place that you are.
Through the grace of God and support of friends from lymenet,etc, many people can tell you that they made it through it....and it does get better.
Do whatever you can to find additional mental health support.....antidepressants, counseling, contact a pastor/priest/rabbi/etc.
Contact your LLMD or psych Dr if you have one and tell them how depressed you are re: your health despite 1 1/2 yrs of treatment...ask for help immediately.
My LLMD told me about one patient he had that got better soooooo slowly that he was surprised that she didn't give up....finally after 3 years of treatment she was better.
I will pray that you have the strength to follow through and make the calls to find the help and support you need right now.
In the meantime....PLEASE call 1-800-273-8255 (the Suicide Prevention Lifeline) if you are feeling suicidal.
We need you here to fight the fight with the rest of us.
We will all be here to cheer for you when you win.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Have you talked with your doctor in the last few days to let him know what is going on with you?
It is a small wonder that you feel the way you do with the double whammy of your unrelenting pain and lack of sleep. Unfortunately the two are probably making each other worse.
You need to get some sleep and some pain relief. The melatonin helps me some in addition to some herbal things, but at certain times in my lyme cycle that is not enough and I have to take some ambien for about 5 hours or so of sleep.
I'm also taking klonopin now which helps with the anxiety and the muscle spasms. Maybe that might help you too. Please check with your doctor for more help.
Anyone with unrelenting pain and sleep deprivation would feel as you do. But there is always hope. If you can get some help sleeping things can turn around for you and become more bearable while you wait for healing.
Also, read the posts about the mepron blues. You may need to ask your doctor for a break until you can get the sleep and pain managed better. You may also consider seeing a psychiatrist to help you get thru this.
Never give up, never give up, never, never, never, give up. I will be praying for you to get some encouragement soon!!!!!
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Hi all,
But does anyone have a pain or body part or limb that has continued to get worse? This is going back before treatment and through treatment...all the while getting worse. Never lets up.
Remember I did have ulnar entrapment surgery on this arm almost two years ago.....and the doc found insane amounts of swelling in the joint. He felt the inflammation could have been compressing the berve mimicking ulnar entrapment.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
richedie...Do hot epsom salt baths help? During treatment I have sometimes that the pain is more than when I began. The hot baths do help me. Not sure about the baths & inflammation.
Just keep hanging in there...Lots of us will be sending healing thoughts your way. I'm kind of new to this & I'd rather be doing something else! GOT TO GET THRU IT!!!
Hoping you can get decent rest tonight & tomorrow will be better for you.
Posts: 75 | From Missouri | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would go to a reg. MD and let him at least check it out. I know steroids are out but it would be good to know you don't have bone cysts or tumors. Sometimes not everything is lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I feel for you beyond belief..i consider suicide every day but live for my family and my nieces...
Please hang in. I cannot tell you things will get better because i truly don't know so i cannot say what i don't know.
I have to stop all lyme treatment due to lackof money, support, and so many other issues i won;t go into because this is your post....and am going to be put into a nursing home so i feel suicidal every day and really don't want to live like this either....
As others said,it is normal to feel suicidal with alll you are going through...just make sure if you plan to carry something out and feel you are a danger to yourself, please call that suicide hotline.
Hugs to you!!!! If you can get treatment, chances are it will get better from what I hear on the forum...and i do understand the upfront costs of seeing a new dr...pm me if you'd like to chat.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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richedie
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Member # 14689
posted
Thanks everyone! I am trying to make it through this...
Lymebrained, so sorry to hear about your situation. I will be thinking of you - feel free to PM me if you want to chat off line, etc.
You know, I really think this pain in my arm IS related. Remember the wrist pain and forearm pain, plus the mottled blue hand started around the same time as the other symptoms.
I had wrist MRIs, a neck MRI(although I was lying down), not sure if I had a shoulder MRI.
I won't go back to my primary MD because of the way they treated me about my condition. I could find another MD or just go to a good orthopedic surgeon(sports medicine specialist) I have used in the past for knee surgery. He repaired my right shoulder after a snowboarding accident. It is me left shoulder that bothers me, along with the elbow, forearm and wrist.
This guy specializes in shoulders. I jut made an appt. He probably won't find anything!
Do you all think lifting weights is OK if light weights with no pain for now?
By the way, I talked to somone else on this board who has the same problem as me. He said: "In my shoulders I get the feeling like a tendon is ripping. Not tender to touch. Its all internal. The past couple of days I have been getting the stabbing pains in my fore arm and knees. Those are pleasant. My wrist is swollen and tender to the touch but that is the only place besides my neck glands."
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
i go to the spots orthopod for my shoulder tomorrow. finally. hope for some relief, even if it means surgery.
boy, this illness isnt for wimps.
Posts: 830 | From Colorado | Registered: Mar 2005
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richedie
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Member # 14689
posted
Aliyalex, if it is the underlying disease...why would you need surgery?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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If I were you, I'd get to a pain specialist and get some really strong pain killers. If the pain is so bad you want to kill yourself, then it's bad enough for methadone, etc. But killing yourself will definitely stop the pain. I think pain killers is a better alternative, though.
Lyme attacks connective tissue. It is possible that your parts that were operated on are particularly susceptible and therefore become inflamed.
I have had a sudden new problem too. I had my ACL repaired in '01 and have had no problems with it until the last month, after I took 2 ticks off me in Oct. Now I have knee pain in the area as if I had the operation 4 months ago instead of 8 years.
I wonder if I was reinfected with lyme and the spirochetes have gone down to my knee and the repaired tissue. However, I'm still taking abx so a new infection should be stopped before it can get started.
I dunno.
Posts: 872 | From New York City | Registered: Jun 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
James, the side that was operated on is fine. This is my good side......now bad Lyme side!
So do you think I am wasting my time going to an orthopedic specialist for a look? It might be nice to rule some things out.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
richedie,
I think it is worth an eval from a competent Dr.
Like James said, lyme attacks connective tissue.
We can develop all sorts of tears, etc.
Even though the lyme is the cause, sometimes it may be necessary to repair some of the damage surgically, etc.
Be clear with the Dr that if you do not need surgery, you don't want surgery.
I also agree that a good pain eval would be a great idea.
Keep hanging in.....
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
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posted
I had severe pain in both shoulders, arms and wrist before treatment and during. I lost all range of motion. I was on Lyrica 3x a day and it barely reduced the pain. After a year of treatment my shoulders almost instantly got better. Of course pain appeared somewhere else, but not nearly as severe.
I have been in treatment a year and a half also, and did not have one ounce of improvement the first year until the shoulders cleared up. I still have only had slight improvement the last 6 months. It just take some longer than others to turn the corner.
You just have to hang in there, because you never know when your time to turn the corner will come. Maybe next week or next month or mabye 6 months; but it will come!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
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posted
richedie, did you see my post above about the Y and heated pools? Not just for PT, has also replaced my mental therapist.
One of my shoulders locked up on me this summer and the pain was horrible. I had been having trouble with that shoulder for months, but nothing like this. I self treated for days and then went to my PCP and he suggested PT.
Found treatment during my Y classes. Didn't want to mess with another doc or therapist!!!It only took about 4 classes and shoulder pain was gone.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Sure, go to the orthopedist and see if he can find a reason. If he does great, maybe he can treat it. If he doesn't, and looks at you like you're nuts, then that CONFIRMS that it's lyme!
My brother had such severe hip and back pain that he had to quit his job, he couldn't sit a at desk anymore. The ortho kept coming up with theories that he couldn't treat. Finally he was convinced it was his fishette joints and burned the nerves, certain that would cure it. He was dumbfounded when that didn't work.
After a year of doxy, my brother's pain was mostly gone. Now, 2 years later, it's all gone.
If lyme is causing the pain, you have to give the abx time to work, and that means you need painkillers to cope with the pain while you wait.
You got pain? You need painkillers. It ain't getting better without them.
James
Posts: 872 | From New York City | Registered: Jun 2008
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richedie
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posted
What if my doc says no to pain killers? I NEED relief. Do I ask for something just for when it gets bad? All the time? Before bed?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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sutherngrl
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posted
James! Your funny!
I got my pain meds from my regular GP. They love giving out pain meds or antidepressants. Its what they are really good at.
I took Lyrica everyday 3x a day for a year or more. It did dull the pain and I was also high from the drugs, so that helped. Now I am off all pain meds. I still have pain, but it is now bearable.
You might not need them long, but it could help you through a rough time, until the antibiotics really kick in.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I have the same problem withh my arm. I can move my arm but it is really weak. I also, have a lot of pain in my wrist and elbo.
This is the side (left) where I was bitten , in fact right by my wrist. I force myself to move my arm, I'm working it every day!! It's not easy...but I refuse to give up!!!
I said a prayer for you!!!
Pls, hang in there I know how you feel!!!
Posts: 200 | From Nevada | Registered: Dec 2008
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Then find a physiatrist (pain doctor). Get your GP to recommend one. PAIN IS THE PHYSIATRIST'S SPECIALTY. (didn't I suggest this many topics ago?).
Now, there are some who are morons, like the one that said my brother's pain was because he needed to "calm the fire" inside him. He recommended yoga. ( I was surprised my brother didn't shoot him).
But the next one he saw was on the ball and tried different meds. He was able to manage the pain. The Dr actually rx methadone, that was the first time I had ever heard someone getting it for pain.
Right now you want to kill yourself to stop the pain. If your GP won't address it, tell him your kin will sue him for malpractice once you've offed yourself.
Good luck, man. It really upsets me to know you're dealing with this.
James
Posts: 872 | From New York City | Registered: Jun 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Man it hurts to type! UGH
I hate my GP and will not go back. Maybe I'll have to find a new one.
Calm the fire? I would have shown him what the fire was all about!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Rich, I'd like to go into more detail if I had the time but I'll try and get back later...
You need competent physicians to help diagnose and treat your underlying conditions, whatever they may be. That will come. Immediately though, it seems you need pain control
Look around for physicians noted as pain management specialists. They are often anesthesiologists who have taken a fellowship in pain management. They will provide pain relief for people who are suffering, and are usually not judgmental. If you PM me and tell me which Maryland LLMD you see, I might be able to give you a pain management practice close by.
One thing that frustrates me about most LLMDs and those that treat associated chronic illness, is to carry on about how you are treating the patient with a holistic approach, without regarding their pain either by handling the pain control themselves, or referring to a pain specialist.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I just got back from the Orthopedist. He said it seems like a tear based on my symptoms as hw moved my shoulder around to gauge the pain, strength, etc.
He is sending me for an MRI, possibly this week.
So, it is either just Lyme or another infection causing the pain and the MRI will show nothing...maybe some inflammation. Or, I over did it in the weight room when I started feeling better.
Saved10, do you have stabbing pain in your shoulde? I found others that do have this.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
On and off, I have pain in the shoulder, elbo and wrist...seeing my LLMD on the 28th to talk about the pain and inflammation.
I had an MRI on my elbo a few years ago, showed nothing but inflammation. I was told I had PD before I had test done for Lyme. I've only been in treatment for 8 month, sick for 5 years.
I was doing really well when I was on flagyl, making a great deal of progress. I feel like I have back slid some. Hoping to get Med's adjusted this month.
Hang in their!!!!
Posts: 200 | From Nevada | Registered: Dec 2008
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posted
JamesNYC, interesting about your old injury flaring up....during the worst of my Lyme, an old scar started hurting that is almost 20 years old. I noticed some other areas of previous injuries also aching. I assumed it was my auto immune system working overtime, but have read much on this forum about Lyme attacking connective tissue as well, so who knows?
Richedie, I hope you find answers soon.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I sure hope you see results soon. It took me one yr to see ANY progress...two years before I thought I might actually get well.
Finished treatment in 4 yrs. Hang in there!!
PS.. I just edited out the reference to an MRI.. I didn't read all the way down! I am so glad you are going to get one. Sure could be something that needs to be repaired.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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we are on a similar schedule with shoulders. i go to orthopod tomorrow. hope i can get an mri the same day.
would a tear cause weakness?
Posts: 830 | From Colorado | Registered: Mar 2005
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
aliyalex, A tear would cause weakness in that it would stop you from being able to do much due to pain. Sound like you? Do you have stanning pains?
I am trying Dr. Singleton's Inflammation diet to see if it helps.....but no change after three days.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Haven't you torn muscles before in your life? Has that EVER given you pain like that? Unrelenting to the point you want to kill yourself?
I find that a very unlikely dx. Plus, if you tore a muscle THAT badly, you sure as HECK would have felt it at the time!
Is your pain in your muscle, the bone, or undeterminable?
Someone mentioned bart to me as a possible cause of that kind of pain.
I don't know a whole lot about bart, but it might be worth exploring.
Did you get any painkillers?
James
Posts: 872 | From New York City | Registered: Jun 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Never ever torn muscles, tendons, anything. Pain was just deep in the joint, then I could feel pain in the muscle, the deltoid muscle. Really hard to determine. I will say, if I try to lif something out to my side...I get a STAB!
I won't be on Bart meds for a while I see my doc tomorrow.
I am trying the Dr. S. Inflammation Diet but I have my doubts. I don't feel food is making a difference one way or another for me. Plus, I am really not eating now because his phase one is dreadful. How much brown rice and veggies can i eat.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I saw my massage thrapist/trigger point specialist today who thinks it could be frozen shoulder since I have been limiting use of this arm since my forearm and wrist hurt. The chiropractor felt this could also be the case.
I can't get in to have the MRI till December 21st! Yikes!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Great news!!! I was doing the same thing...limiting my use as well.
I have long way to go to work things out...but I'm working on it!!!
Hang in There!!!
Posts: 200 | From Nevada | Registered: Dec 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
But, one thing that stands out in my head is I had ulnar entrapment surgery two years ago on my left arm. Two weeks after surgery I started having my tingling in hands and feet, plus other things.....the onset of Lyme. The doctor who moved the ulnar nerve said he could not believe all the inflammation in the joint.
Can you say Lyme? I wondered if the pressure from inflammation or something was irritating the nerve, hence the mimicking of the ulnar nerve entrapment.
Either way......I started having the wrist pain about a month after the surgery......two years later...the entire arm hurts like hell!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I read some where when you have Lyme it can be difficult on the healing progress after having surgery. Don't know wheather that is true or not...However
I had surgery on my foot about 4 years ago. I still can not walk without that foot cramping.
I've been to a lot of foot Dr's and they could not figure out why my foot would cramp. I've been sick for 5 years!
When my LLMD put me on Flagyl I was able to walk on that foot better, I was shocked. I did not have any inflammation in my foot.... Once the Dr took me off Flagyl my foot started cramping again and the inflammation started up!!!!
Good thing I see him in a couple of weeks!
Posts: 200 | From Nevada | Registered: Dec 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Well, I got a prescription for ER Ultran today.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
my orth said i have frozen shoulder. duhhhh. i didn't want to tell him that my female chiropractor already told me that.
and the mri (hideous) was today. i kept spasming and he had to redo many times. TG my medicare came thru tuesday.
The hotshot orthp from Vail told me i should have a steroid shot. he said that it was only oral steroids that exascerbate lyme, not an injection. i just didnt go into it. what do you say to that? i was too tired to deal with the blank stare.
Posts: 830 | From Colorado | Registered: Mar 2005
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
You can thaw a frozen shoulder with conservative measures. If that is what I have....I will do it that way! I get my MRI in two weeks. It is an Arthrogram.
You were spasming? What do you mean? Your shoulder? Did they give you a shot of die. I think that is essentially an arthrogram. I wonder, does it contain anything toxic like Mercury! I just had a mercury filling removed, so I don;t want to add more back into my body.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Rich, I agree with James. Get thee to a Pain Doc!!! I was on methadone for years and had IV lidocaine 2xweek for terrible pain.
My husband asked the hospital pharmacist who frequently wrote tripliket prescriptions (hard narcotics for pain). That's how he found my pain doc.
Now I no longer need the methadone, morphine, etc. She had and continues to have wonderful meds and ideas to help the pain. If you want me to email you my current pain regimen just PM me.
I am so very sorry to hear your sorrow and frustration. I guess we have all been there. I've been at this for 21 years. But I did have great luck with IV antibiotics....just didn't stay on them long enough. So I know there is a light at the end of the tunnel. Just one tiny step at a time and you'll get there.
I am a different person now and probably a better one. Before I was so active, driven almost. Now I am more compassionate, much wiser and I think a better person. My marriage is certainly much stronger now than before my illness.
Things happen for a reason....even lousy things. I try to find the opportunities for growth in everything that comes my way. I hope I am setting a good example for my children and grandchildren. I might add that I have also learned to swear most creatively!
Good luck and PM me if you want to chat.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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