The mental anguish continues

[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

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.

[BrokenBladder]

Quahog it's good to see you posting again, but I'm so sorry you're having such a difficult time. It's not fair at all that you're not being taken seriously with your pain. I'm sure you've looked into all avenues, but I would encourage you to keep trying and not give up.
Some doctors need to see something in black and white before they believe that we're in pain. I've read so many horror stories on here about people who have been in pain for years before a doctor figured out what was wrong. The bright side is someone will eventually figure this out. It's not in your head so you know there is something wrong!! Have you ever seen a Rheumy? If you find a good one they can do wonders for you. Forgive me if you have posted in the past that you have, but I can't recall right now.
Please continue to post here and let us help support you as much as we can. We all understand the frustration of dealing with some of the doctors, not all, but I have faith that you will find the right one and once you do it will be such a relief both physically and emotionally.
Also if I'm reading your post correctly, is there now a possibility that you don't have lyme? Sorry for asking so many questions......it's a bad pain day for me and I have a terrible headache to boot!! Take Care!!

[Quahog]

thank you for your reply Lisa.

I also thought that when I found this pain clinic that came recommended to me that things were going to be better. Well, they were for awhile. when I first started going to the pain clinic I met a wonderful doctor who was quite compassionate. He wasn't Rx'ing my meds at that time but he did help me to apply and evidentially win my social security disability. So after a certain amount of time my PCP no longer wanted to Rx my meds so I went back to the pain clinic and he was like yes absolutely, I will Rx them. He was concerned about my neck. Herniated C-3, C-5. He had me then follow up with a Nurse Practitioner who was the one who Dx'd me with Lyme. The results of those tests weren't very convincing but she ruled me as having Lyme anyways. It seems she had/has it herself. Then durring one appointment she said she was going to start to taper my pain meds because Lyme does not respond to Narcotics. It seems they did not work for her but they do work for me. I then began to tell her about my neck pain and discs. To which she replied, " IT'S ALL FROM LYME !!" She would not listen to me at all. I did end up seeing a Lyme Literate doctor who thought that while I may have Lyme, it would be criminal to say that was all I had and my neck problems were more than likely not related to Lyme at all. I even saw a Rheumatologist who said that I did not have Lyme. I don't know whether I am coming or going. All I do know is that I am in pain and a Dx of Lyme has not changed that. They are going to take away my only means for a normal life and I am very angry about it.

I have now just seen a new PCP doctor and it seems she does not want me as a patient and to top it all off she wants to send me to a Infectious disease doctor and I know what the outcome will be if I go. So now I am trying to get back into see the first doctor I saw at the pain clinic who was so great and see what he says. The problems in my neck are getting worse and I need more testing but if I can't get anyone to agree to it I don't know what to do.

I have all the signs and symptoms of cervical stenosis and Myelopathy and if I am right and it's not corrected I could end up completely paralyzed.


thanks for listening.

Glenn

[BrokenBladder]

Glenn when I first started reading your post I was going to suggest that you talk to the original doctor at the pain clinic. Looks like you've already thought of that. It's obvious that Lyme or no Lyme you still have serious pain issues. Taking you off of the pain meds is just plain crazy!! That will only make a bad situation worse.
I certainly hope that you can get back to that original doctor at the pain clinic and at least get some of this stress off of you. Wow they're really loading you up with it.
The Rheumy that you saw said you didn't have Lyme but did he/she have any ideas of what is wrong with your neck? Maybe that's an avenue that should be pursued further.
Anyway keep us posted and I hope things improve for you.

[waggytalk]

Glenn when I first started reading your post I was going to suggest that you talk to the original doctor at the pain clinic. Looks like you've already thought of that. It's obvious that Lyme or no Lyme you still have serious pain issues. Taking you off of the pain meds is just plain crazy!! That will only make a bad situation worse.
I certainly hope that you can get back to that original doctor at the pain clinic and at least get some of this stress off of you. Wow they're really loading you up with it.
The Rheumy that you saw said you didn't have Lyme but did he/she have any ideas of what is wrong with your neck? Maybe that's an avenue that should be pursued further.
Anyway keep us posted and I hope things improve for you.

i 2nd this. going off pain meds would be bad. more pain, more deperession etc. i don't see how this can help.

[oh_snap]

If you are having neck pain/symptoms, and have herniations, and even if those herniations are not causing spinal cord compression, they could, nevertheless be a source of pain/symptoms due to things like IDD (internal disc disruption) and/or irritation of spinal nerves (where they exit the spinal canal).

To assume there is nothing wrong with you upon a negative lyme test (I am oversymplifying), when you do have neck pathology (that could explain your symptoms) makes no sense to me.

Get those films looked at by a spinal doc (OSS/Orthopedic Spinal Specialist) or NS (Neurosurgeon with a spinal specialty). Do not take reports, take the actual fillms.

General docs/nurses may downplay spinal pathology on films as incidental (or normal for one's age), or not symptom generating until they [the pathology] cause significant spinal cord compression (very bad), when, in fact, herniations have a capacity to leak irritants (IDD) onto the spinal nerves, neural structures, etc, and cause great discomfort/suffering.

If you haven't done it already, get another opinion on the cspine before accepting that you are insane, really.

BOL

[curiousforever]

I'm so sorry you're having such a hard time.

Hugs...and prayers that you'll find someone to really help you.

[Kira]

I agree with oh_snap... see a doc specializing in spinal stuff (orthopedic spine surgeon or neurosurgeon), and bring the films. The primary care doc might not know enough about the spine stuff. Who knows... there may be something they can do to help with the neck pain, in addition to or besides the pain meds... Plus, if the specialist gives you a dx, maybe your other docs will be more understanding.

[BrokenBladder]

Quahog just checking in on you to see how you're doing!! Didn't see you on here yesterday so I started to worry. Stop in and let us know how you're feeling.

[Quahog]

Hey there,

Well yesterday was an absolute HORRIBLE day !! I could not walk (I still can't today) my neck pain was almost intolerable when my pain meds wore off. I am getting electrical shocks down my spine into my lower back (Lhermitte's Sign ?) and I think I am having what they call Hoffman's sign in my right hand. When I lay down the pain radiated into my chest and almost feels like cardiac pain but I have had enough testing on my heart to know it is not from that. My arms and legs become completely numb and I can't move. I had to have my wife help me out of bed !! Oh and then there is the headaches.. Bad occipital pain. Thankfully my pain meds are helping but they don't stop all of this agony and they also wear off.

Today, unfortunately when I went to pick up my new prescriptions my pain meds have been cut back, she (Nurse Practioner) has started to taper my meds and I am very upset. I see her next month on the 12 of March but I am debating if I am going to keep it. I will then see the actual doctor the following week. The problem with all of this is I still need by meds and I don't think I can wait until the 21st to get them.

There must be some internal memo that says people with Lyme are not to receive any pain meds and not to believe anything they say. Before the Lyme DX everything was fine now it is not. I am bothered by the fact that my neck issues are not from lyme but the NP does not believe me.
OMG What can I do ??

I may have to go back to the ER again but what can they do for me that hasn't already been done ??

Glenn

[oh_snap]

Glenn,
It is entirely logical/possible to have both lyme disease, as well as spinal issues, and either can result in symptoms.

The neck symptoms you describe are very common in cspine patients. I have had two multiple level cspine surgeries and the symptoms you describe are quite familiar [to me] and I don't have lyme. Both surgeries were done to decompress the spinal cord, the last one being a complete spinal reconstruction (3 levels).

It is possible to have two things going on. You need a thorough cspine workup. This doesn't always lead to surgery. There are spinal interventions that actually might help you, and lessen your suffering. I don't know how limited you are when it comes to doc selection, but you really may benefit from getting other opinions.

If your symptoms are soley coming from the lyme disease, then you still would benefit from the opinion of another doc who may be able to think a bit more outside the box as to treating your pain/suffering.

Just my opinion.

[Pharmacist.steve]

OMG What can I do ?? +

I would sit down - you can't walk anyway :-) and write a letter - containing much of what you have posted here - in Reader's Digest format - about your pain... maybe bullet points.. FAX it to the DOCTOR... request your pain meds are returned to previous level or upped if necessary until you are seen by the DOCTOR. What is worse thing that can happen - ignore your letter?

[Quahog]

Thank you Steve,


I don't know why I have not taken the time to write one sooner.

Thank you for your advice.

Glenn

[Kathi49]

Glenn,

I just wanted to jump on and say I agree with the advice that Kira, Oh Snap and Steve just gave you today. When I read your post about the occipital pain, I cringed. I know what that feels like and I hope you can get that letter into your doc asap. Let us know what happens and hang in there. :)

[Quahog]

So after taking everyone's advice I have written a letter to my pain doc and decided to post it.

Please feel free to read it and if anyone has additonal comments or concerns let me know as I would be glad to read them.

It's funny that this is even happening. This pain doctor was the one doctor who was more concerned with my cervical issues than any other physician.
He felt the herniations were becoming worse and that was before all the other problems started.

BTW: In additon to Hoffman's sign and Lhermitte's sign, I also believe I have a postive Babinski sign as well. I definately need someone with an open mind to think outside the box on this one. There is nothing worse than a health care provider with Tunnel Vision.

Thanks


Dear Dr. ***i:

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 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,

[BrokenBladder]

Quahog I think it sounds good. It appears that you got all of you points across and yet you made it short enough to read quickly. Good Job!!

[oh_snap]

:D Glenn,
Pain docs, in general should have a solid knowledge of spinal pathology and interventions to help the pain that they may cause. Hopefully your pain doc will be responsive to your letter.

Having two conditions that may cause overlapping symptoms makes life hard on a doc as they don't seem to like having to deal with complicated patients.

If your neurological symptoms can be elicited with neck movement, then I would especially look closer at the spine as a source of those symptoms. Much of what you are describing could be attributed to pressure on the spinal cord and/or spinal nerves. You are describing cervical radiculopathy at a minimum, but it also sounds like cord compression as well (myelopathy), if your legs are affected (although, this could be a sign of having spinal pathology even lower than the cspine).

I would suggest that you also have an MRI of the complete spine (if you haven't already). This will allow you to have some "baseline" since your symptoms seem to be progressing, and possibly indentify spinal pathology that may account for your neurological symptoms. Herniations that get worse, or larger, with time, don't usually disappear on their own (generally).

Once you have an adequate understanding of what is going on with your spine, you and your doc can decide if any number of non-surgical interventions would help lessen your suffering in addition to pain meds if your doc will consider them. You obviously still need care for the lyme, but that is a separate issue.

I will share that with one of my diagnoses, interstitial cystitis (which is painful among other things) I would never have found a doc willing to treat the pain coming from the bladder (certainly not an IC doc). It was because I was being treated for spinal and brachial plexus disorders that my pain was being addressed at all.

Sadly, if I only had IC, I would not have pain management, even though it is acknowledged as a very painful disorder.

Good job on communicating with your doc. At this point, you don't have anything to lose. Hang in there.

disclaimer: am not a doc, and don't pretend to be one, unless you would like to call me: Dr. of opinions and ideas (for which I have plenty of anecdotal experience, and no degrees).

[jena1225]

I like the letter too, but I would send it by Certified Mail with signature required just in case you have to take legal action - you will have proof you tried before doing so

It is very baffling as to how they would not treat your separate issues separately. You have 2 different issues that require 2 different methods of treatment. In your case, one has nothing to do with the other, so I can only imagine how frustrated you feel :mad:

I have MS (very similair to Lyme), but I also have bad lumbar issues (most likely caused BY the MS) Both are causing me pain, however, I can tell that the worst pain I have is from my back problems (DDD, L5-S1 bulge, Annular tear, arthritus, hypertrophy)

But Neuro is pretty convinced the pain is mostly MS related. However, I can tell the difference, as the back pain is so centrally located, and my MS pain is more overall from spasms, nerves being hit, etc...

But, if he told me to only take Lyrica for my MS pain, and stop taking my Vicodin and Percocet,(my PCP actually rx those for me) I don't know what I would do.

I sincerely hope you stay strong and do not let them bully you into telling YOU what pain you are in. The letter is a good start, and maybe they will see how serious you are.

Good luck!

[Mark N]

I think you have written a very good letter and I agree with jena that you should send it certified mail so you have a receipt that it was delivered. I hope your doctor recants ans sees that the medication was treating your pain,whatever the source. Good luck!

[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.

[tenacious]

glenn,

it is horrible just to read your posts.......it is very evident how much pain your are in, and how debilitating this has become.

stay away from that np.....get an apt asap with a doctor that knows how to treat pain,.