Sunday, July 8, 2012

Symptom Update Before I Get My MRI Results

Because I had called and requested to find out the results of my MRI before my next appointment, I got a call this week. The receptionist at the Neurologist's office briefly told me that my report said there where white matter spots and also a mild bulging disc. That is all she could tell me until my follow-up appointment this Tuesday (July 10).

In the meantime, I have had continuing symptoms. Although the past two days, my headaches haven't been as bad, I am having worse balance / walking issues. Also, while eating at Cracker Barrel this weekend, I suddenly dropped my fork because my right hand went numb. On the way out of the store, I almost fell as I lost my balance while reaching for the door to leave. A brand new symptom is a buzzing / vibrating sensation that I had in my ankle or heel of my right foot as I took steps and put weight on it. Very strange indeed!

For now, I have been reading and reading and reading all the sites I can find online that have the symptoms I am experiencing and as usual, it is always Lyme and / or MS that comes up with the closest match. At this point, I just want to know WHAT it is that I have!!!

Sunday, July 1, 2012

Update Since 1st Neuro Appointment

I saw the NP at the Neurologist's appointment on June 21, 2012. While going over all of my symptoms, just as predicted by other people in the Lyme community, she basically laughed and said that it is SO RARE and mostly in the Northeast of the USA. Yea, same song and dance as what I was told! *sigh*

What could I do? I need serious help so I just continued to tell her all of my most recent symptoms .... terrible shooting pains basically everywhere in my body, weakness in my back and hips, and most troubling, more balance issues! She did her neurological exam but I was shocked that she didn't do anything with me standing to check my balance. WHY NOT? I have "no idea"!

So, although her exam puzzled me and she definitely wasn't buying the Lyme Disease suggestion, she did order lots of bloodwork and most importanly an MRI of my brain and spinal cord (cervical). She also gave me a prescription for Gabapentin (generic of Neurontin) to help with my pain and told me to come back in a month in order to give the pre-cert and all labs time to be completed.

I had my MRIs done on June 28, 2012 ... boy, were they nervewracking! I was told it would probably be Monday (tomorrow, July 2nd) before the results would be back. In the meantime I had my follow-up appointment with the neuro moved up to July 10th! I did NOT want to wait an extra 2 weeks to get my results!

Since my 1st neuro visit, just over a week ago, I have had lots of pain and more troubling symptoms. I have a bad headache pretty much daily with lots of sharp stabbing pains in my head, temple, around my eyes and even in my face at times. I have also had what I would call a mild stiff neck although my neck / back of head/ muscles are very sore when I turn my head from side to side. I am so worried that I have some type of meningitis forming and almost went to the ER one night. It took 2 Ibuprofen and 2 pain pills to finally make it better enough to where I didn't feel like I was in a life-threatening situation!

Thankfully, today I had a little more energy but now my lower back has been hurting significantly all day and at one point my right knee was as well. Right now (bedtime) I am starting with my daily / nightly headache so it is time for my pain medication.

I am assuming that if something really bad showed up on my MRI that someone would call me ASAP to let me know! Praying that I don't get that call!!!

Thursday, June 14, 2012

Last Visit With My LLMD - 6.07.2012


Well, after going to a walk-in clinic for my horrendous rash, I was told that they wouldn't treat me and that the prescribing doctor for the Doxycycline needed to be the one. So, the NP actually called and made an appointment for the next day for me to See Dr. K. in Franklin. I was very disappointed because Dr. K just walked into the room, didn't even sit down, quickly looked at my arms and said, "Yep, that's a Doxy rash ... see them all the time!" Ummm, ok! No comments, no advise, no further treatments suggested?

I asked about my labs and he basically said that everything was fine and since the tick came back "normal" then I was good. No explanation for my symptoms ... when I asked about them, he simply said, "I have no idea." I tell you, it also sounded like "and I really don't care" either!

He said that if I wanted to talk more that I needed to schedule a follow-up appointment so with that, I left and felt very "let down". I knew the first visit this time that he seemed like he didn't really want to deal with another Lyme Disease patient / case and I guess I was right. Apparently he has (over the past two years) experienced some major burn-out with Lyme and co-infections and the mystery that it all entails!

So here I am ... all the same symptoms when I first was bitten and tested POSITIVE for Lyme through IGENEX over 2 years ago but because my labs were "fine" then I'm on my own??? The past several days ... ever since taking my last Medrol pill (steroid) ... I have been very achy and painful again and have experienced weakness in my hips, lower back, spine and legs! Something is still WRONG! Maybe the ONE tick I sent off this time was negative but I was bitten by at least THREE others that I pulled off of me during the same week! One of them could have easily re-infected me OR they just stirred up the dormant Lyme Disease already in my body. I admittedly quit my Lyme antibiotics therapy just before the holidays during my first infection because I was so tired of it! Up until RIGHT AFTER this last TICK BITE, I had been doing pretty well. I would still get random pains and muscles twitches but nothing like I am having again NOW!

Since I no longer have a "LLMD" and there is not another one that I know of in the state of Tennessee, I have decided to see a neurologist! People in the Lyme community have warned me NOT to do this because most do not "believe" in chronic Lyme infection but I want a thorough neurological exam and maybe I can start ruling out things at least!

My GP got me an appointment with a local neurologist one week from today on 6.21.2012. I am so thankful!

Thursday, May 31, 2012

Stopped the Doxycyline Due to Rash

I took the Doxycycline for 3.5 weeks but finally had to stop it. I developed sun sensitivity and heat / cold intolerance and eventually broke out in a red bumpy rash that developed some blistering. I am still quite achy and am having lots of tingly, burning and sharp pain sensations pretty much all over my body. I have even had sensations in my face and eyes which I do NOT like AT ALL!!!

At this point, I am as confused, frustrated and upset as ever! I had cancelled my upcoming LLMD appointment just out of disgust with antibiotics but now I know that I need to continue treatment as I am still very symptomatic. I just don't know WHAT we should treat at this point! *sigh* On one hand, I just want to try to forget about it all and just see what happens to me but on the other hand, I realize that putting off treatment isn't going to make it go away and it could likely make it worse and more difficult to treat down the road.

THIS REALLY STINKS!!!!!!!!!!!!!!

Thursday, May 24, 2012

A Whole New Can of Worms ... Not Good!

I got the results from the blood tests that my LLMD did last week. Everything sort of "Lyme related" came back negative. However, I tested positive for chlamydia pneumoniae (CPn). You can imagine my first reaction was, "Clamydia ... WHAT?" (lol) well, this is different ... this is Chlamydia PNEUMONIAE which enters the body as a respiratory infection and can cause pneumonia. YES, I was hospitalized for 13 days with double pneumonia and sick at home on oxygen therapy for a couple of months back in 2004.

Ok, so what is the big deal and why did my LLMD test me for past pneumonia? Well, apparently CPn is a very nasty bug (just like Lyme) and is extremely hard to rid from your body. It has been linked to many other illnesses including Rheumatoid Arthritis, Multiple Schlerosis, Chronic Fatigue Syndrome, and even Alzheimer's Disease. So, although I have not spoken with my LLMD about his opinions, I am "guessing" that much of my pain and neurological symptoms may in fact be related to lingering CPn infection instead of or in addition to Lyme Disease. I have to question though, didn't I truly have Lyme Disease 2 years ago when I started this blog? I had a VERY "postive" test result from IGENEX labs and classic symptoms PLUS I had the BITE! What I am going to suppose at this point, is that when I became infected with Lyme in 2010, it may have activated the CPn ... OR, this most recent tick bite (2012) stirred things up and activated the CPn? I know that my LLMD said he was testing things to see if the tick just caused an immune response so I'm thinking my "theory" makes sense. *sigh*

Update 5.23.2012

I got the lab results from IGENEX on the tick that I sent off and it was negative for Lyme. My LLMD expected that it would be, that is why he is already testing me for co-infections that I could have gotten from this tick. (Of course I had been bitten by 3 different ticks during the same week ... the one I sent off was just the one that had been attached and engorged on me for a lengthy period of time.)

I am definitely have more symptoms again. Today I have had body aches again and lots and lots of joint / bone cracking and popping. It is so weird, almost anytime or part of my body that I move, I hear a cracking sound! I am still having a pain and sticky sensation in the corner of my right eye as well. I'm not sure if the Doxycycline is pulling out more symptoms through die-off the bacteria or what is going on. I have now been on the Doxycycline for 3 weeks.

Thursday, May 17, 2012

Back to the LLMD .... 5.17.2012


Today I saw my LLMD again after a year and a half. He is having me continue with the Doxycycline 400 mg. per day for the next two months at which time I will see him again. In addition he gave me Nystatin and Diflucan to help with yeast and also recommended a couple of supplements as well.

I had my blood drawn today to also check for co-infections and based on those findings, he may prescribe other antibiotics. I am also still waiting to get the results from the tick test to see if it was positive or negative for Lyme. I didn't have it tested for anything else so the test won't really be totally conclusive but at least my LLMD is testing my blood for co-infections.

My doctor said that it is also possible that even if this tick didn't have Lyme Disease, that it also just carried enough other infections that it caused an auto-immune response that made me symptomatic again. Anxious to see what my labs tell.

Monday, May 7, 2012

More Symptoms and Pictures to Prove Them!

Oh, boy! I have now found a total of FOUR ticks on me in the past few weeks! Three of the four have bitten me! As far as symptoms, I continue to get sharp pains in various places ... my toes, bottoms of my feet and various joints and muscles. The rash on my breast that I mentioned in my last post is still very visible! So, I decided for "proof's" sake and record-keeping, I would go ahead and post a couple of pictures of it. If my documentation helps someone else down the road of dealing with Lyme Disease and its co-infections, then at least I have accomplished that!

Rash on right breast:
Image and video hosting by TinyPic

Image and video hosting by TinyPic

In addition to this rash, I today noticed a new cyst, nodule, "bump" on my right wrist! This looks and feels exactly like the nodule that "popped up" overnight during my original infection with Lyme two years ago. In order to keep from having to search back to those pictures, I will repost the finger nodule first below and then the new nodule on my wrist that I discovered today.

Finger Nodule from 2010:

Image and video hosting by TinyPic

Image and video hosting by TinyPic

New Wrist Nodule - 5/07/2012:

Image and video hosting by TinyPic

Image and video hosting by TinyPic

So, my confirmation that I have indeed been re-infected with Lyme Disease is becoming more validated each day. :(