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Old 03-28-2004, 11:59 PM   #1
Join Date: Jan 2004
Location: Connecticut
Posts: 39
Pammymy HB User
Needing Help: Neurological Symptoms and Arthritis

Hi - it's been years (@7) now since I have been treated for Lyme (doxy). Initially, I went months and to sooo many docs and then finally, back to my PCP before receiving treatment.

Primarily, I had been suffering from joint pain in nearly every joint on my left side from my shoulder to my foot and even big toe. A couple months following the onset of the initial symptoms - extended to my other shoulder too. And, I believe this to be about the time there were hints of some neurological symptoms.

The good news was that, although it was close to a very painful, 6 month journey - I did finally start on a 3-week course of doxy. Most all the joint pain subsided within a week - my PCP said this verified to him that I had Lyme - or another tick-borne bacteria, despite the negative tests. Oddly though, I did have a + result when the tests were repeated by my ortho 4 years ago.

I did not go back on antibiotics for the 'Lyme'- although it has taken just as many years and several courses of other antibiotics to get rid of a recurring (nearly every month!!!) sinus infection and URI. In fact - just this past January my PCP put me on a round of antbiotics for 3 weeks - and I have not had a reoccurrence of these infections (finally!!).

But back to the joint pain - after the doxy worked and 'most' of the joint pain went away...I was still left with pain in my hip region. Months later, I also had pain in my back (lumbar).

Just this past January - I was finally diagnosed with lumbar spinal stenosis...caused by arthritis. the leg pain is referred pain from the spine.

I've read up a little bit, on the net about the Lyme/Arthritis, and what I've experienced appears to follow suit.

So this is a two-part inquiry:

Though I've been finally treated for the spinal stenosis, I have not had much pain relief - but the couple days that I've been pain-free as well as some days that the pain is 'tolerable'...I feel as though it's easier for me to concentrate and mood-wise I am much happier and find that I don't become so easily overwhelmed.

I have other neuro symptoms as well - but I hadn't been 'pain
free' long enough to make any correlations between these symptoms - and neuro symptoms cause by the pain.

now, my questions - have others with Lyme-related arthritis been diagnosed iwth spinal stenosis and how has your treatment experience been?

Is there really neuro-symptoms from pain like I have experienced from the condition I have - or could the symptoms be strictly Lyme-related?

And how the heck do I get rid of these neuro symptoms without having to see a shrink who's going to blame it on my mother (we've had a decent relationship since I've been stricken with the symptoms - she had nothing to do with the Lyme - honest) - and I don't want to go on psychiatric meds.

all these symptoms vary in ranges from mild to moderate: obsessive-compulsive, short term memory loss, confusion, speech difficulties, mental fatigue, paranoia, depression, anxiety...just to name a few! These symptoms often are 'managable' but still are disruptive to my life.

So I have two major Lyme-related conditions - arthritis and neuro are these usually treated?

Thanks so much!


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Old 03-30-2004, 12:21 PM   #2
Join Date: Jan 2004
Location: Charlotte Hall, MD
Posts: 357
Komondor HB User
Re: Needing Help: Neurological Symptoms and Arthritis

Were all of your rounds of antibiotics for only three weeks? You most likely need a much longer treatment. My husband was on doxy for 4 months and is doing very well.

Our friend has been on a combo of antibiotics for 6 months, doing great and hoping to stop all meds next week when he sees our LLMD.

Our dogs were on doxy 4 and 5 months and seem to be doing well. Sadly, vets are more knowledgable about Lyme than most docs. Our vet always puts dogs... on 6 weeks of doxy even for early stage lyme.

I am not so lucky as I have 2 co-infections. I have been on medication since July 2003 and 5 months of the treatment was for Babesia. I am currently on a combo of antibiotics for Lyme and Bartonella. I am feeling much much better. I can even run up the steps again...

Everyone is different and it depends on the person as to how long treatment is necessary. From my understanding you should be symptom free for 2 months before stopping meds.

I know people that have been fighting this for more than a year. Have you read about co-infections? You need to keep searching the net as there is a wealth of information out there and many who can help you...

You need to find a Lyme literate medical doctor (LLMD) asap. Yes, your symptoms could be from the lyme and I would be more worried since you were already positive. Hope you are feeling better very soon.

Old 03-31-2004, 08:53 PM   #3
Join Date: Jan 2004
Location: Connecticut
Posts: 39
Pammymy HB User
Re: Needing Help: Neurological Symptoms and Arthritis

Thanks - I have heard of the co-infections. I brought up the 3-weeks of Doxy issue to my PCP - just a couple of months ago. And that antibiotic treatment was from back in 1997!!! Anyhow - my PCP 'consulted' with his handheld electronic guide and he told me that 10 days is more than sufficient to be rid of al Lyme and other tick-carrying bacteria.

When I told my PCP about what I've read on the boards here - that people are on the antibiotics for months..he told me the information he cited to me is from the leading Lyme docs.

As far as the arthritis...I keep coming up against a brick wall!!! I am trying to find a doc who is willing to try me on calcitonin - I know it's very $$$ but - I also have a thyroid condition and no longer have a functioning thyroid.

Calcitonin is produced by he thyroid. Also, there was some research showing that calcitonin may help reduce the inflammation of Grave's Eye Disease - which I suffer from. My eyes protrude and it is disfiguring and is dibilitating as well. You'ld think this would be a 'no brainer' that there is a medication that might help me with two major disabling conditions.

Now I did bring up the calcitonin issue (again) with my endocrinologist, just today and, along with my other bloodwork, will have my calcium levels checked.

He said that is my calcium levels are 'low', then calcitonin may be a possibility for me. But - I read on the internet that the 'issue' is actually too much calcium, not low calcium!!!

See!!! The brick wall!!!! But when you mention your dogs btw - I hate to say this but I even told one of my docs (another brick wall - when a spine specialist told me there was nothing wrong with my spine - more bunk) that who would allow even a pet to suffer as I have?

Thanks for you wishes for me to feel better soon - I appreciate that!! And I hope the same for you as well!!


Old 04-01-2004, 02:39 PM   #4
Join Date: Jan 2004
Location: Charlotte Hall, MD
Posts: 357
Komondor HB User
Re: Needing Help: Neurological Symptoms and Arthritis

If this is Lyme long term antibiotics will make the neuro and pain stop eventually. Lyme is a multi systematic disease and can cause so many problems. Three weeks is not long enough for you. Knowing what I know now 3 weeks is not long enough for early lyme either. If a dog is given six week for early lyme what does that tell you?

A lady in my area was diagnosed early and it still took 9 months to get things under control. Have you read the book ticker mentioned under the post titled LYME DISEASE INFORMATION? Your local library should have it. I suggest you read this book and keep researching the web.

The fact that you have tested positive would make me think this is lyme and possibly co-infections causing you to feel the way you do. I am not a doctor and this is just my opinion… but if I were you I would find an LLMD and run as fast as I could to his office.

Lyme does not go away it only gets worse. Any PCP that tells you 10 days of doxy cures lyme is dead wrong. You can continue to believe what this guy is telling you or you can take you health into your own hands. I would suggest the latter…

Had I listened to my doctors I would still be miserable. I had not very felt well since the early nineties but the symptoms were mild. Mostly sinus infections, numbness, TMJ, URI, joint pain, ringing ears, fatigue… Things were getting a little worse year by year…

Then in June 2001 I got a bad case of poison ivy and was prescribed prednisone. That was the beginning of a very miserable time in my life... Steroids suppress the immune system and the Lyme… went out of control. Looking back it was probably a blessing in disguise but I thought I would die before finding out what was wrong.

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Old 04-02-2004, 07:40 PM   #5
Join Date: Jan 2004
Location: Connecticut
Posts: 39
Pammymy HB User
Re: Needing Help: Neurological Symptoms and Arthritis

Ooooh - it is such a struggle!!! As far as prednisone, I've been on 2 rounds recently for the spinal stenosis and, I am actually more 'lucid' and concetrate better when I'm on it. 'Supressing' the immune system though - doesn't necessarily mean it is 'weakened' and for me, my symptoms improved.

Get this though - I have had massive sinus infections (involving all sinus cavities). Last winer I had started to get really bad dizzy spells. The ear, nose and throat doctor didn't want to put me on antibiotics!! And I'm finding more and more that docs are becoming more conservative about prescribing antibiotics - and rightly so. This may be what I'm up against @Lyme.

Back to the dizzy spells...landed me in the hospital while I was on vacation out west last summer. The CT scan confirmed the sinus infection, I was prescibed antibiotic and improved. But every month - they kept coming back - I would 'wait' until I got really bad before heading to the docs. I'd have laryngitis and a fever too. This cycle went on for 2 years. Finally - the 3 weeks of antibiotics was the kicker.

But lo and behold, I felt the symptoms coming back again...except this time, they started to go my immune system evidently is able to fight it off.

Oh - back to the dizzy spells (see how I am?? hehe)...jeez I'm really so sick and tired of being so capricious too!! the hospital had also checked for carbon monoxide (because of the dizzy spells) and found that the levels were high.

But they said - since I was a smoker that the levels weren't necessarily high. So I have forgotten about that and accepted it. A couple of months ago - my ear, nose, throat doc had requested my scans and tests from the hospital out west...and he saw the carbon monoxide levels and said they were high.

I asked him his opinion about the smoking issue - and he said he didn't know about it. And that's that. He didn't say anything about me being retested, any referral or treatment.

In the meantime - between being treated for the spinal stenosis and, an upcoming (orbital decompression) reconstructive eye surgery beginning this coming Tuesday...I just can't get to all of these issues!!!

Evidently - nobody is concerned about the high carbon monoxide issue, so why should I? Except that it is one of those things that could be causing some of these symptoms I'm having.

I'm hoping to contend with the above-mentioned, including the Lyme in the near future but....I'm only one person and I'm dealing with several medical issues!!! Gets to be a bit much - and I have no family help, no husband, boyfriend - nobody. I have a 16 year old son to take care of.

Ok now I'm venting hehe - sorry!!!

Again - I appreciate your advice and I need that 'push' to get going and deal with these issues. Thanks!


Old 04-05-2004, 11:02 AM   #6
Join Date: Jan 2004
Location: Charlotte Hall, MD
Posts: 357
Komondor HB User
Re: Needing Help: Neurological Symptoms and Arthritis

Hey Pam,
I do agree there are times prednisone is needed but I am just saying it can make things worse. It did for me but my body had been fighting lyme for so long...

Our dog almost died from lyme. We had no idea she was/is infected. She started clotting from the inside and had horrible blood bruises all over her body. Without the prednisone she would have died. I was very worried while she was on it but things did work out. She was on doxy for 4 months and seems to be doing well.

This sinus infections were the same for me. I actually got so sick of going to the doctor that I started self medicating. My mom always has ammoxcillian on hand because she has so many farm animals and dogs. Sad thing was the animals were never sick I was the one using her supply.

Sometimes the sinus infections were so bad I would be in bed for a couple days or more. I went to the ER a couple times and they always said UR or sinus infection. The dizzy spells came and went until I got read sick. Then is was constant...

I am sorry you do not have support but you need to stay strong and keep researching. There are more and more people taking their health into their own hands. Doctors do not know everything. I know there are wonderful docs out there but I have only come across one.

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