Living With Lyme Disease...

“I was asked to share my experience with Lyme Disease, so here it is…

In January of 2004 I started to have a pain in my right elbow and about a week later I noticed my right shoulder was store as well. I thought it was due to too much time on the computer because my job involves computer work and I also have a website. I eased off, but nothing improved.

About that time I was seeing a Chiropractor for some back trouble and I brought up the pain. He tried unsuccessfully for about 6 weeks to make it better. He suggested an Orthopedic Surgeon. I made the appointment. He put me on Celebrex. It wasn’t helping.

After a few more months I noticed my right bicep was decreasing in size and strength. I brought this up to the Orthopedic doctor, who then referred me to a Neurologist. After several tests the Neurologist came up with a few theories, none really made sense and sent me back to the Orthopedic doctor. The Orthopedic doctor was out of ideas and sent me to a Stanford Neurologist.

The Neurologist ran the same series of tests and concluded it was nothing major and would get better in time. He felt my bout with Shingles in July of 2003 was the cause. I went back to the Orthopedic doctor again because by now my left shoulder was starting to hurt as much as the right. I had very limited mobility in my upper body and quit wearing T-shirts because it hurt so much. The Orthopedic doctor recommended going to my family doctor.

Now around July 2004, my left foot was starting to get sore and my knees started to swell and I was running a low grade fever. I still had the previous problems. My family doctor referred me to a Stanford Rheumatologist. I was now walking with a cane.

The doctors at Stanford examined me for hours and finally asked me if I did any hiking, to which I said “yes”. He concluded that it was probably Lyme Disease and put me on IV Rocephin daily for 6 weeks, a monthly IV Immunoglobin to boost my immune system and ordered a series of tests. I tested negative for Lyme, but a lot of Lyme patients never test positive because this is a very hard disease to test for.

After showing no improvement I was put on oral antibiotics (Zithromax), which started to help. By around February of this year I retired my cane and thought I’d be able to get out and hike by summer. My range of motion in my arms improved and I no longer had any major pain. My bicep is now returning to normal and my fevers are gone. Unfortunately, two months ago I started getting worse in the knees and two weeks ago I started using a walker for the first time. I can barely put any weight on my right knee and bending it is very difficult. Sitting, walking, getting up from a sitting position and in general, life, is a chore. I can still drive and I do still work. Thank God I have a job that doesn’t require physical work.

I’m now on a different antibiotic (Doxycyclene) and also a very strong drug (Methotrexate) that is used on cancer patients and people with severe Rheumatoid Arthritis. I continue to have monthly IV Immunoglobin. This can be cured, but it will be a long-term thing, possibly a year or more.

Like most “Lymies”, I never remember being bit by a tick or having the “Bulls-eye Rash”. It is also possible I was infected over 20 years ago when I lived in Pennsylvania and some stressful event (Shingles) brought it out of being dormant. Who knows? One thing is for sure; I don’t take everyday things like sitting, walking etc for granted anymore.

Sorry for the long story. Hope to see you on the trail soon! ”

“Get better soon, Mike.”

“Thanks for sharing and I hope you do get on the trail again soon, Mike.”

“yes thank you for sharing your story. Get well soon Mike.”

“Mike, my prayers are with you. I'm frequently bitten by ticks and there's not a whole lot one can do if they hike in tick country. In fact I pulled a tick out of my leg a couple weekends ago from the Lost Coast. Like you said, you never know if you have Lyme's until sometimes much much later. It sounds like a horrible thing to deal with. I hope to take a crazy-wild hike with you someday, Lyme's be damned.”

“Hope you get well soon, and it's great to post this here so that anyone who generates such symptoms will have it in their mind to mention that they spend a lot of time outdoors and could it be lyme disease? Thanks for this bit of public service.”

“Thanks for sharing, Mike. I'll say a prayer for your recovery.”

“I'd recommend getting a lyme vaccine for anyone doing a lot of hiking. I don't think its known how effective they are; but they certainly have some prophylactic effect and I think its worth the precaution.

I tend to find the advice of to do in insect country for summer hiking to be totally impractical. In ninety degree weather I'm not backpacking in long sleeves. Do the tick checks, but deer ticks are hard to see.

Mike, godspeed!”

“Mike:

You have my sympathy. I have psoriatic arthritis (like rheumatoid) and I was on methotrexate for 8 years before they had to take me off it. You are supposed to have a liver biopsy every two or three years if you stay on it. My second biopsy cvmae back "bad" and I had to stop taking it. Lucky for me they had just come out with two new drugs for rheumatoid arthritis. One has done wonders for me.

Be very careful if you are on methotrexate for more than a year or so. Get your blood drawn as often as they say and get a biopsy when they say. Fortunately, the liver heals itself very nicley if you stop taking the methotraxate as soon as it starts causing liver damage. I have been fine since I stopped taking it several years ago.

As for the Lyme disease, I wish you good luck and as fast a recovery as possible. At least it can be cured even if it takes a long time. I will always have my friend, arthritis. I call him Art.

I know the healing process takes a long time, but I hope it is shorter for you.

Anyone who has similar symptoms should ask the Doc to consider Lyme disease even if they do not recall a tick bite.”

“Thanks everybody!

AJ, I'm going to try and get off that stuff soon!

From what I'm learning, lots of people have been misdiagnosed as having MS, Fibromyalgia etc. and indeed have Lyme. Be carful out there!”

“Monthly IVIG. Wow, that's strong stuff. My son had IVIG for Kawasaki's disease and I don't think he got sick for 9 months after that. Prior to Kawasaki's he was on 4 anti-biotics consecutivley. He'd finish one and start another.

Thanks for the update. I hope you recover back to your February form.”

“That IVIG ain't cheep either! $4500/month...thank God for insurance.

I'm on the IVIG "indefinately". :0”

“I knew it was high, but didn't realize it was that high. To you have to be admitted to the hospital for it? We did, but it was to make sure there wouldn't be an allergic reaction. Also, he was 3 at the time. By know they know you're not going to react to it I suppose.”

“I go down to the local "clinic" (former hospital) and get it done there. Takes about 4 hours. I used to have a PICC line when I was on IV Rocephin daily, which made IVs and blood draws nice, but I don't need the line now. The most painful part now is removing the tape!”

“Mike, Lyme disease sounds like a nightmare. Hope you are totally recovered and back to full strength soon.”

“Thanks for telling about it, and sharing those symptoms, which might help someone else, sooner. I hope you start getting better, soon, and the pain eases off. Good luck to you.”

“That just sucks, Mike...I find it so hard to imagine the lively man I met in Yosemite reduced to using a walker..I guess we can just continue including you in our prayers..I like your mountaintop Woo Hoo! Love, Lin”

“God bless you Hikin Mike. Thank you for sharing.

It's good to see your spirits seem up, considering.”

“Hikin Mike, I'm still planning to hike with you one day, so hang in there. Thanks for sharing your story. I often wondered exactly what had happened. I have known other people who told about a long, difficult-to-diagnose bout with Lyme's. They were recovered when I met them, so think positive. I will keep you in my prayers.”

“Thanks for sharing. We will look for you on the trail in the future.

My sister has had two bouts with Lymes. It took them forever to finally diagnose her the first time.

Sometimes Lyme's is accompanied by some other diseases. For my sister, they ultimately ended up treating her for three things, as I recall.”

“wow. thank you for sharing. i always figured if i got it i'd be alerted by the bullseye, but i guess that's not always a given. :(

keep recovering!!”

“Best of luck with the Lyme disease and the treatments. I hope you are hinkin at full speed soon. Thanks for keeping our awareness high. Hiking, as I do, in Northeast Lyme country - I appreciate it.”

“Thanks sharing, Mike. I remember when I was mentioning Permanone earlier this year and some people pooh-poohed it, you mentioned some of your reasons why it woud be better to use it than not. I definitely agree.

I wish the best for you and it would be great to hike with you. :-)

It's a strange world we live in. Going outside and hiking should be a great, natural activity that helps a person's health. Yet we have to worry about lyme disease, West Nile virus, hanta virus, sleeping sickness, etc, as opposed to the potential cancer caused by the products that help us avoid the bad things. IT SUCKS!”

“Thank you everybody for you well-wishes and prayers. If there is any good in this, and I believe there always is good in any bad thing, is that it has made me really appreciate the simple things in life we all take for granted! I also hope that I've brought some awareness to everybody to be careful out there. :)”

“Thanks Mike for the insight and strength you have and shared with us. Lyme Disease is not something we always think about, but it should be in the back of our mind and we should always try to prevent it if possible. A good friend of mine had it and is just now recuperating fine. She went thru years of meds and therapy to recover. I don't think it is something you ever completely recover from tho.”

“Thanks Mike for giving me a list of things I can look for. Hiking in the East Bay Hills includes lots of deer ticks. I have even pulled some off of myself. The darn things start out so small it is almost impossible to see them until they have been there awhile.

I am going to the Ohlone tomorrow and will keep you in my thoughts. See you on the trail when things start turning back your way.”

“That's scary stuff Mike.
I got a bullseye rash from a tick bite on Ocala2 and tested negative for Lymes. Makes a fella wonder if it is just lying in wait.

Get better soon.”

“http://www.firstcoastnews.com/news/topstories/news-article.aspx?storyid=40215

This guy's down for the count. He was FSU's starter for the upcoming season, too.”

“Wow. Poor guy. I wish him well in his recovery. I hope the psychiatric symptoms were only because of the Lyme disease and that they go away when the Lyme does.”

“One of the people I work with caught that. Big guy who lost a lot of weight & was messed up for prob a year or more. Seems to be doing much better & gained his wgt back.”

“Neurological problems are also a symptom of Lyme. It's unfortunate for him but it sound like it was caught early enough and he has a doctor that knows how to treat it. Maybe with enough high-profile cases there may be more done about this disease.”

“Hikin Mike, do I need to worry about ticks when RatPacker and I go to Yosemite and Sequoia? We don't really have them here. (thankfully)”

“Well, I didn't think we had them here either, but then again I don't know if I was infected here in CA, or 25+ years ago when I lived in PA.

So, I would be too concerned...but be observant.”

“National Map with risk shown
http://www.cdc.gov/ncidod/dvbid/lyme/riskmap.htm
last edited: 7/11/05 5:34:13 PM”

“Ticks are seen more in the California lowlands and foothills than in the High Sierra. I can't recall ever getting a tick hiking above 7,000 feet.”

“Don't believe everything the CDC says...”

“Yeah, that map says we do have them in Western WA. Never in my life seen one or heard of anyone seeing one in Western WA...

Thanks for the info tho. If I remember, I'll do a check at bedtime. But knowing me I will have been drinking large quantities of wine and will forget to check. LOL!”

“pixie - Checking for ticks is what friends are for.



Can I be your friend?



LOL.”

“HM, how are you doing with this? I think about your story every once in a while and hope you are doing well.”

“Likewise.”

“Hoping you are well, Mike!

Mine has taken a weird turn. The latest blood tests show the disease is no longer acute. But, I am still getting pain in the upper arm joints. However, I have developed a problem in my right leg this week. I have been experiencing periodic pain in the three joints in that leg. Tuesday was really rough and today has me limping quite a bit. A rheumatologist told me the other day that the pain may well be present for the next 6 months or so (it may come and go). But, that was before the leg started up. I didn't expect it to move from the arms into my leg...
last edited: 10/06/05 10:59:03 AM”

“Thst sucks, get better soon guys.”

“man that sux stu. get better!”

“Thanks, guys! Yeah, this is no fun. I'm tired of being in pain. Hope to hear from Hikin' Mike, though. He was doing better last time we heard from him.”

“Hikin Mike, I didn't think Lyme's disease could be cured. I know we have another tter here with the disease. I forget who she is. I hope you do get well and get rid of the disease entirely.

Dogs can get Lyme's disease also. They have vaccines for dogs to avoid getting it, but the vaccine has some harsh side effects, so people tend to not give the vaccine since Lyme's disease is curable in dogs.”

“Trick Or Tree Blood - Hope things get much better soon. I'd loan you my crutches, but the last person has not returned them, yet. It was my martial arts instructor, who suffered a temporary injury.”

“What'd you do to him, Slim?

LH, it's West Nile that doesn't have a treatment...
That's what my doctor and I thought it was when my first two tests turned up negative. Third one was a charm, though.”

“Tree, we just got notified of our first case of West Nile in WA in a horse. They never said if the horse was always in the state to confirm that the horse got the virus while in this state.

I have heard people with Lyme's disease talk about it being with them for years with symptoms always popping up from time to time, so that's why I thought it could not be treated where you could entirely rid yourself of it.”

“Anti-biotics are what we get for the Lyme disease. Frankly, I wish it was West Nile, rather than Lyme. Since I got educated about it, i came to realize that West Nile is not nearly as deadly as I originally thought. A lot of that is media hype. It's people who are either elderly or with a compromised immune system that have to worry about it. Otherwise, a healthy immune system will work it out over a period of days (maybe weeks, in some cases) and then you're pretty much done with it.”

“I'm not getting around much better. I did manage to go car camping last weekend. That was a chore! My knees are still real sore and weak and I still use a walker. The doctors think that I am over my Lyme now and my problem is some auto-immune disorder. I'm not sure I agree, but I don't have any better ideas.

I've been on some type of antibiodic for over a year now, same thing with Ibuprofen. I'm also on Prednisone, although my dose is now being tapered off. The doctor convinced me to try a Cortisone injection in one knee...that doesn't seem to help.”