[Quahog]

I really would like to know what I have done to deserve the type of treatment that I've been receiving. Doctors and other medical professionals for some reason either do not believe what I am saying or they think I am a moron who does not know what he is talking about.

I am upset to say the least. In the past I spoke of a Dx of Lyme well I have had a positive ELISA result. That of course was followed by a negative western blot so maybe I don't have it after all. Regardless, I am still in pain and after 5 months of Amoxicllin I am not feeling any better. The good news is I am not feeling any worse but that isn't saying much. I have been seeing a Lyme Literate doctor who is treating me for the Lyme but says there are other problems. One of which happens to be my neck.

My neck pain is SO MUCH worse and all I want to be believed when I say that it hurts. The thing is no one I speak with believes me and when I ask about a discogram or myelogram they all say you don't need it because the MRI doesn't show the disc impinging the cord. Well, I may not be an MD but I know there is something going on and no one wants to help. I have seen the films and the discs are so close to my spinal cord it isn't funny. It would not take much for the cord to become impaired. It isn't normal as some have suggested. I show symptoms of Cervical myelopathy and no one will listen !!

My new PCP doctor doesn't even want me as a patient at least it appears that way. She said she wants me to see a ID specialist. I am not crazy about the idea.

I am bothered by the fact that before the Lyme my pain was being treated and I was being taken seriously. Now, the pain clinic wants to stop my meds. The mental anguish in addition to everything else I am enduring is cruel and unusual punishment. I want to report them in the worst way but feel it won't get me anywhere. Why would just having Lyme make people act this way? Why won't anyone step up and think outside the box?
I fear that the more I complain, the more chance I stand of being labeled a drug addict, or seeker. then again I may already be labeled.

If I had cancer I wouldn't be treated like this yet Lyme pain is comparable to cancer and that is not including the discogenic pain.


This is just not fair and I see no end in sight.

I just can't keep doing this to myself. The medical community has failed me and I no longer want any part of it. I see others will problems similar to mine and they don't seem to have any problem getting help why can't I?

Glenn

[~KELLWANTSANSWERS~]

{{{{{{{{glenn}}}}}}}}}
I am so sorry you are feeling so much pain.
I could really empathise with your every word!!
I feel as you do...I am in pain from fibro/arthritis and i feel as if
i am being treated unfairly too!
I really believe the doctors are trying to keep insurance
costs down..Or whatever...I have been denied certain tests i thought
would help diagnos my neck pain...and have been told,they are too expensive.
I then said:Are you paying for it?Which i just got a look of disbelief from the doc..LOL
He still said no.
I dont have any words of wisdom..I just wanted to let you know your
not alone.
I hope you find a good doc soon..

[fiberowendy2000]

Where's the Glenn I know who would kick butt then take names??? You gotta fight and advocate for yourself.
I know how you feel though. Sometimes it is so darn tiring to fight all the time. Maybe your wife can go with you to your doc appts and help?
Sorry you feel so poorly. Wish I could help more.

[Quahog]

Well after much thought I have decided to write to my pain doctor and leave this up to him.

Here is the letter I am going to send if anyone has any comments, concerns or suggestions please feel free to let me know

Thanks.


I am writing to you to ask for your assistance in regards to changes that have been made to my treatment plan. As you are aware I have been prescribed Oxycontin as well as Oxycodone for BT pain. This combination has been very valuable in treating my chronic pain syndrome. It has helped return me to a more normal lifestyle and for that I am grateful.

During a recent follow up appointment after it was discussed that I may have Lyme disease I was advised that a taper protocol would be implemented and my pain medications would be discontinued. I then asked for a more through reason as to why this decision was reached and the only explanation I received was that opioids do not work for Lyme. I must say I am concerned and confused by this explanation. On my worst days my pain has ranged anywhere from an eight to nine. Needless to say it has made my daily activities very difficult. After taking my prescribed medications these levels are decreased by as much as fifty percent. The improvements to my life have been remarkable. If this medication needs to be stopped wouldn’t it be prudent to offer another type medication or treatment? Or perhaps wait until improvement is shown? I have no issues with the discontinuation of opioid therapy if there were another option made available that would treat my pain levels as successfully.

At this point in time it is also not known if Lyme is solely responsible or not but irregardless, it has been suggested by a Lyme Literate physician and Rheumatologist that my neck issues are unrelated. It has been mentioned that I be re-evaluated for spinal deformities. In the time since I have last spoken with you my neck pain has increased dramatically. The pain in my neck is now radiating into my shoulders and shoulder blades, has caused pain and weakness in my right arm and occipital headaches as well. I also appear to have Lhermitte's Sign with movement of my head and neck and possible Hoffman’s sign in my right hand. I have increased difficulty with walking and upon waking I have complete numbness in both my arms and legs.

I would ask that my pain medication be returned to previous levels until I have had a chance to be seen and re-evaluated.

I thank you for your time and assistance regarding these matters.

Sincerely,

[finz]

Hi Glenn, I am so sorry that you are having to go through this.

There are a few docs that I want to throttle too ! What happened to "do no harm" ? Do they not realize that ignoring or minimizing our complaints causes more stress and more pain ?

[finz]

Hello again, Glenn....

I had Neurotalk open on my computer all day, so I didn't realize that you had posted again until after I did.

I really like your letter and I think it was an excellent idea to write one. What you write will be added to your record. If your care is transferred to another doctor or ever reviewed (by insurance or a lawyer) you know that your complaints will be in there.

I would add more about the impact of this increased pain, ie......you have not been able to attend church for the last 8 weeks, are not able to bathe daily, or any other quantifyable information like that. What was your lowest/highest/and average daily pain levels while on the meds vs what is it now without the meds. Pain is in it's nature subjective. If your blood pressure went from 110/60 to 220/160, a doctor would be negligent to ignore it. You don't want to let them get away with writing "Patient continues to complain of some neck pain, which is baseline." Although all complaints of pain are still technically subjective, make sure they are aware of any measurable descriptions that you can give. The weakness and numbness when standing is good to add here.

I would probably, if it were me, eliminate or condense some of the Lyme disease stuff. Specifically.....likening the pain to cancer pain, could possibly come off as dramatizing your complaints. If "10" is the worst pain imaginable, rate yours as where it stands on the scale of 1-10. I too have severe neck pain. My dad is (thankfully) a colon cancer survivor. Aside from short term post op pain, he did not feel pain as part of his disease. Pain is what is perceived in the brain's of it's victims. Whether it was caused by a disc or tumor should not matter in ethical care. Now, if only we could get the docs to treat us accordingly

What doc or what test suggested that the neck pain was not from Lyme disease ? I would focus more on that. If your contention is that it is not from Lyme disease.....likening the pain of Lyme to cancer pain and talking about how Lyme is not "supposed to" respond well to opiods all confuses the matter to me. You don't want them thinking you are grasping at straws. We want to keep the focus on having them figure out what is causing the neck pain and treat that.

Regarding the fear of them thinking we are all drug seekers.......I don't think there is anyone here who can not empathize on that issue ! I would add any facts about other treatments that you are doing to try to help with that....ie: heat, ice, massage, OTC creams, accupuncture, etc. I have gotten some relief from a tens unit and cervical traction unit. Have either options been offered to you ? How about PT or chiro ? I haven't found any of these to be cures, but they each help a little. My problem is .....the cervical traction unit helps when I use it, but I can not be laying down on the floor in it when I drive the kids to school, etc.

Good luck Glenn !

[fiberowendy2000]

As finz stated its a great start and I would give some of the comments a whirl and see how the letter sounds with the new additions. I agree, adding what you could do on the meds and what now cannot be done with the taper method is a great idea. Doctors need that solid info, not just "I hurt."
I would also add more about wanting more tests done for your cervical issues. More MRIs, xrays, fMRIs, CAT scans, whatever you have to do so that you can definitely rule out ANYTHING not just guessing like this doc is.
Keep going Glenn....its hard but I know you can do it!

[Quahog]

I have just been in contact with my new PCP. she has decided to order a Cervical MRI Finally !! I hope that this solves some of the questions I have. I have also been told that my Lymphocyte level is high. Hmm? I wonder if there is a connection

[razzle51]

One question what is a ID Specialist??

[Quahog]

ID= Infectious Disease