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Have an unusual case, please help! Lengthy, but please read...

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Posted 11/27/2010 6:03 PM (GMT 0)
Hi, everyone...I have a really strange case and I hope it's OK to post here. If not, I will not continue, but after scouring the Internet, I have not yet found a group that might be able to address what is going on with me. I hope that someone here will have some advice.

I don't have Lyme disease, but four days ago, I found out that I do have anaplasmosis--not entirely dissimilar, but quite a bit less common, it seems. I had been in to see my GP several times about this severe pain I've been having in my neck, shoulder and arm (as well as other places) for about three months, and since none of the treatments we'd tried were helping, he decided to look into autoimmune diseases and infectious organisms. I don't think anybody really believed I'd be positive for anaplasmosis, but here I am. It explains a lot. For the last few months, I've felt sick all the time (nausea, intestinal problems, loss of appetite), been very tired, overly warm even when it's cool outside, had headches, and severe muscle aches.

However...I also had an MRI in the midst of this diagnostic process, and I got those results four days ago, too. My C4-C5 disc is herniated, bulging to the right, which seems to explain the worst of the pain. My GP won't speculate, however, on how much the anaplasmosis might be making the disc inflammation worse than it would normally be. I've been bounced around a lot in pursuit of a diagnosis...I already had chronic pain problems before this started and work with a pain clinic. My pain doc had me start physical therapy a few weeks ago, and my physical therapist sent me back to my GP in search of more information.

So here I am. I've been taking doxycycline for four days now, and it makes me extremely sick to my stomach. I'm taking OxyContin for my shoulder, and that makes me feel just as sick (nauseated, constipated, tired) though it works. As a package, the whole situation has me feeling run-down and a little hopeless, in spite of finally knowing what's wrong. Is there a light at the end of the tunnel w/tickborne illnesses, or does this just go on and on? Is there anything I can do to feel any better in the meantime?? ANY input will be appreciated!!

KiwPi rolleyes
Posted 11/28/2010 1:11 AM (GMT 0)
Welcome KiwiPi  !!!  

I am still waiting for further blood tests for Lyme, etc.  but am on Doxy as well,  as I highly suspect Lyme and possibly co-infections.   

In regards to Doxycycline:  Take with food-- a full meal-- and a full glass of water. You shouldn't have much-- if any-- of an stomach upset.  This works for me!

But do not take with milk or other calcium rich foods as they will cause Doxy to fail in absorption.

As for your herniated disk:  I ruptured one in my neck quite severely about 8 years ago. It did require surgery. The pain was unbearable and I nearly lost the use of certain arm muscles. Fully recovered from that...

.... but recently--  the same pain you describe-- started haunting me again.  I had an MRI which really showed not much of anything.  A little arthritis and some minor bulges-- normal for my age and wear and tear---but nothing that can account for the pain which includes....

....shoulder, upper back, trapezius muscle, spine and arm tingling.  My neck muscles hurt so bad I couldn't even hold my head up!  Tie that in with my chronic Tennis Elbow and it's a nightmare! 

I believe the Doxy IS WORKING because pain is getting much better, so  I do attribute my neck issues, strange muscle aches, etc. to Lyme.  

I have MANY other symptoms that are starting to resolve but there are good days and bad.....very good and very bad.  It's a cycle, and I've only been on Doxy for less than a month.   

I of course can't say that Anaplasmosis is the cause of your pain or is worsening it....but if it is, I do believe there IS light at the end of the tunnel, recovery depending on the length of time you've had Anaplasmosis......and the agressiveness of the antibiotic treatment  you have been prescribed.....

.......hopefully  by a VERY SMART Lyme disease specialist. 

Please be sure you are seeing a VERY GOOD Lyme literate doctor!!! one who will take your pain and symptoms seriously and treat agressively.  

There is hope, so don't despair! 

The members here are WONDERFUL, SUPPORTIVE and EXTREMELY KNOWLEDGABLE concerning tick borne diseases--- among other things!  

I am confident you will receive great feedback--- much better than I can supply.    I read every single post on this board (took forever) but it was worth it!   I learned sooooooo much!  

 I am most interested in how YOUR recovery goes, as we have similar neck symptoms.  Perhaps you will give me a boost in hope if all goes well for you.

 Best wishes!!!!    And keep us posted!  

 

Posted 11/28/2010 1:29 PM (GMT 0)
Also...if you haven't already :).....read the first thread here...an intro to Lyme. A wealth of info! Detoxing is a must! And you will learn about the Herx reaction that happens when the Doxy or other abx's start killing off the 'bugs'.

And I forgot to ask....how much Doxy are you taking per day? And does your doctor feel that surgery is an option for your bulging disk? Mine was severe, as I said, and surgery was a must. The bulge was ready to cut through and sever a nerve!

But from what I've learned through internet research (articles by doctors) and I'm still no expert!--- certain bulges CAN heal themselves in time--- the bulge will sort of 'dry up' on its own and dissolve away.

I've never taken OxyContin....so I can't venture a comment on that. I just stick with NSAIDS....when necessary....and take with food as well.

At least knowing you have a TBD does explain a lot....as you said. My first blood test came back 'indeterminate'.....so I'm still in 'the dark' about what I have or don't have until I get next results.

Hope you're feeling better!
Posted 11/28/2010 3:56 PM (GMT 0)
If there's one thing I've figured out w/everything I've read so far, it's that having a TBD can be extremely overwhelming. I did take a gander at the first thread here, and it's extremely helpful...also bewildering.

I need to look again at the Herx reaction info there. I Googled it for a quick look, and all I really got was a description of what it *is*, not whether there is anything you can do about it (I'm assuming that's where the detoxing part comes in) or if it's harmful. I do know that since I started doxycycline, I feel EXTREMELY crappy. I'm taking 100mg 2x per day, which I've been told is pretty standard...?

I wish I could take NSAIDs, but they don't mix well w/lithium, which I also take. They decrease the renal excretion of lithium, which then raises the lithium level in the blood, which can be serious/possibly fatal. Hence the narcotic pain meds. They did try me on Indocin for a while, at risk of raising my lithium level, because the inflammation has been that bad...but it didn't even work. Just made me sick to my stomach.

It's been brought to my attention that steroids, being immunosuppresants, can make a TBD much worse...I had five cortisone injections during the time I had the infection (presumably), and I remember that after them, I did start feeling sicker. Being that they remain in the body for such a long period of time, I'm a little concerned about this.

It certainly isn't fun to find out your body is suddenly overrun w/foreign invaders. I'm sorry your blood test came back w/vague results. It is so, so frustrating to not know what's going on. Have you been quite symptomatic? My symptoms have been somewhat nondescript--I thought that I was suddenly become more sensitive to medication side effects. My psychiatrist said, after I told him my diagnosis, that he'd suspected I had something going on, but he couldn't put his finger on it. I'm glad they finally found it, and I hope you get a diagnosis soon. *hugs*

Kiwi
Posted 11/29/2010 1:34 AM (GMT 0)
200 mgs a day is standard but according to many doctors who specialize in TBD's, 300-600 mgs of Doxy is recommended --- but I can't tolerate more than 300 and even that is tough on me. Thus the IV route for many who have had the disease for a long time (undiagnosed- untreated) and need really agressive treatment.

The Herx reaction means that the litttle buggers are dying off ( a good thing!) and releasing their 'death toxins' (my new words) into the body faster than it can handle getting rid of them. Detoxing helps with that.

So yes....you can feel pretty crappy during these die offs. Symptoms can worsen. And I have read that really high level die offs can wreak havoc on the body. Dangerous? I don't know! But at 200 mgs you should be fine with handling any herxing.

Also, steroids are a no no when you have a TBD...especially orals like Prednisone. I don't know very much about the residual effects of injections. Sorry!

You can look up my original post-- it describes my entire set of symptoms-- which my once trusted LLMD thought were atypical. Sheesh! Especially after my 'indeterminant' blood results came back. Then he thought everything was all in my head!

Seeing a new doctor this week! Yes this is all VERY frustrating. But I'm hanging in there! So is my shoulder/neck pain (comes and goes) and my constant companion, tennis elbow.
Posted 11/30/2010 4:33 AM (GMT 0)
Is your tennis elbow an extension of what goes on with your shoulder? (Sorry, I can't remember what tennis elbow actually is). In the last three weeks or so, the pain that starts in my neck and shoulder moved down to my elbow and then down to my wrist. My PT can palpate one area and it hurts in the others. Annoying and painful.

Today has been the worst day so far...I have the strangest pain in my head. It's a severe headache, but it's worse than that, as if my entire head were filled with something that puts the most ungodly pressure on my eyes and sinuses. I don't dare bend over. I have a fever and can't stay awake. Nausea all day long, which only gets worse every time I eat or drink anything at all. Everything aches.

I'm making an appointment to see an NP who is Lyme literate. Unfortunately, she doesn't take insurance, but at this point I don't feel like jeopardizing my health by choosing sub-par health care for this disease.

KiwiPi eyes
Posted 11/30/2010 1:13 PM (GMT 0)
Tennis elbow presents with tendon pain in the 'attachments'. It's not joint pain although the entire elbow can feel stiff upon full extension of the arm.

My tennis elbow was an early symptom. I first had it in my left elbow. It went away and then jumped to my right elbow where it has remained chronic.

Once I got my stiff neck and shoulder pain....and back pain.... it seemed to tie into my tennis elbow pain. My entire right side hurt. But not my wrist.

I attributed all of my early symptoms to 'getting older' etc......until I got the neck pain and a fatigued feeling in my trapezius muscle and was literally unable to hold my head up. Almost bought a neck collar!

Within a week of taking Doxy I could hold my head up normally....whew!.

Also...headaches and a stuffed up feeling had been bothering me for months! I haven't had a headache in weeks now...and don't feel stuffed up anymore.

Everyone has symptoms that can be classic, weird, atypical, severe, mild....and on and on. TBD's can attack people in many different ways.

Yes please see a Lyme litterate doctor!
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