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Posted 7/9/2017 6:58 AM (GMT 0)
I haven't been officially diagnosed yet, but I am just about positive I have Lyme. Got bit 14 months ago, had the bulls eye rash, bad knees, bad vision, spine pain, migraines, now leg issues all ever since the bite. Yeah, I believe I have the Lyme. Waiting to be seen by an LLMD in a city about an hour away from me.

Anyhow, I just thought all these issues were due to me being 43 and not anything else. I mean, I did have a 10 day treatment of antibiotics for the rash I had gotten from the tick bite I received in turn for a great time spent with friends at a camp site in Northern VA last Spring... That should have taken care of it, right? (rhetoric)

So, I was playing volleyball 6 weeks ago and injured my knee. It is still a bit injured, but my walking in very strained in both legs. It is like it makes my brain feel weird when I try to walk fast and correctly, I am very clumsy and lose my balance very easily now. The tell tale that it was more than just the injured knee was it has affected my drum playing. I use my good knee to kick the bass drum, and it is completely off. Like something is misfiring in my brain..I am terrified that this is permanent, and even more terrified that it may get worse. I have read different accounts of people getting ataxia from chronic lyme disease. Some say it got better with treatment. Others end up in a wheelchair. Not sure what to expect. I am just writing this in hopes of hearing some positive news on others experiences with this.

Post Edited (Hoagie) : 7/9/2017 1:01:32 AM (GMT-6)

Posted 7/9/2017 7:30 AM (GMT 0)
Hi Hoagie - Good to hear that you have an upcoming appt. with a LLMD.

Until that time, start a list of questions you have for him. When you think of something, write it down.

I have had some issues - although not exactly like yours.
about 4 months after symptoms started, I developed a tremor in my hands. I was still working at the time and one morning as I went down the stairs, I noticed my legs were quite weak...and a bit shaky.
On my way to work I stopped at a red light...and my right leg started to shake so bad that I was worried I wouldn't be able to keep the brake pedal depressed.
That was when I decided I wasn't safe to drive...and stopped working.

It did get better - actually even prior to starting treatment the leg shakiness subsided - I was able to start driving again - but I was still quite weak...until I started treatment. After many months of treatment, along with rehabbing, my strength started to come back.

I have been treating for almost 3 years now (yes, 3 years) and am still doing physio and rehabbing my body. It's been a long haul for me..and I have a ways to go still...but am optimistic I will fully recover.

It is very scary for these physical changes to happen...but you will start to see improvements after you start treatment.
Posted 7/9/2017 11:41 AM (GMT 0)
Girlie I have a question for you,

Since you've been on treatment for so long, has the abx affected your stomach at all? I'm do worried about how the abx are gonna affect me negatively

Post Edited (physedgirl09) : 7/9/2017 6:56:46 AM (GMT-6)

Posted 7/9/2017 2:32 PM (GMT 0)
Loss of balance and dizziness - though not true vertigo - is a common symptom. Treatment can lessen the problem, as will LIGHT exercise. The problem that I had was that a: I shuffled and stumbled, discouraging me from moving much, b: the crushing fatigue also reduced both the desire and ability to move much. I didn't realize how much I shuffled until I walked with a friend and discovered that I COULD walk, but I had to concentrate on doing so. Brain fog - the "hereafter" syndrome goes along with it.

Remember, these thugs rarely travel alone. The entire list of co-infections can be along for the ride but not all of them respond to the same therapy. Herbs can be very helpful in assisting the abx, both during and after the course of abx.

Probiotics, especially those that are enterically coated and in large cfu concentrations - 300+ Billion per day minimum, taken at least 4 hours apart from the abx is also necessary to rebuild the microbiome destroyed by the abx.

This isn't a sprint. It's a grind.
Posted 7/9/2017 3:25 PM (GMT 0)
Hi Hoagie,
Welcome to our community! I'm glad you found us.

I​f ​you haven't ​yet​,​​​​ it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as​​ ​​it is packed ​​full of ​​important information​​, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​​​And, here's another good place to find helpful detoxing rout​​​​​​​​​​​​​​​​​​​​​​​​​​ines​​:​​​​​​ ​​​http://www.tiredoflyme.com/detox-methods.html​​

I'm very glad to hear that you will be seeing a LLMD soon!

I too have had the ataxia for quite a long time - and I did end up in a wheelchair for a while - but it didn't last once I found effective treatments. I did heal, and stayed healed (for about 2 years) until my adrenals crashed and I got reinfected.

Be sure to ask questions and share your concerns!!!
Posted 7/9/2017 5:18 PM (GMT 0)
My husband and I both had lyme and both had entirely different major symptoms. Hubby is a drummer, guitar, piano and many other instruments. He did not have trouble with his motor skills, he had tinnitus which is horrible for a musician. I had no tinnitus but had plugged ears and was constantly trying to yawn to clear them.

Now here is the good news. Treatment has "cured" both of us.

Don't think that this is permanent! Think positive. Be consistent in your treatment, detox daily, eat super well with no junk and try and get enough sleeps.

Good luck and hang in there. Also keep reading here. This place super helped me and hubby both in our lyme treatment.
Posted 7/9/2017 8:21 PM (GMT 0)
Thank you so much all! And I am very happy to hear that you all are doing well smile

I am freaked out because I am the provider for my family. If I can keep working through all of this, it will be a blessing.

Other than your extremely helpful responses, I had gotten some really good news from a friend today at church as well. I was talking my issues over with someone, and my band leader's wife over heard me talking. She mentioned a Neurologist in our city that helped out both of her sons overcome PANDAS. I had never heard of it, and apparently is as controversial, or even more so, then Chronic Lyme. She told me that he treats Lyme as well. She said he is a bit eccentric, and kinda reminds her of House, the TV doctor. She said he was a genius, but really weird...lol.

So, I am going to call my doctor tomorrow first thing and have him give me a referral to see this doctor. I just hope the wait isn't months long.

Thanks again! And it looks like I will be a regular on this forum from now on.
Posted 7/9/2017 8:27 PM (GMT 0)
Hoagie - I'm still not doing really well...but getting there.


Lyme and co's - specifically bartonella - is known to be a cause of PANDAS/PANS
We have a member whose daughter was treated by a LLMD - she had PANDAS/PANS and after extensive treatment for Lyme/Bart/Babesia - she is healed. (3 or 4 years of treatment)
Posted 7/9/2017 9:06 PM (GMT 0)
Hoagie, this is awesome and I hope that this new doctor works out. I think a lot of doctors are a tad bit weird. For goodness sake, they had their noses in books for years while I was partying, dancing and living a grand ole life. Their social skills can be lacking and to them I bet I appear brusque.

Anyway, good luck and you are in my prayers and in my prayer chain. Hugs of healing.
Posted 7/9/2017 9:50 PM (GMT 0)

Girlie said...
Hoagie - I'm still not doing really well...but getting there.


Lyme and co's - specifically bartonella - is known to be a cause of PANDAS/PANS
We have a member whose daughter was treated by a LLMD - she had PANDAS/PANS and after extensive treatment for Lyme/Bart/Babesia - she is healed. (3 or 4 years of treatment)

Sorry Girlie. I really hope you get to feeling better sooner rather than later.

That's really interesting about PANDAS. This woman told me that her sons were healed after 2 years of treatment. She was telling me they developed PANDAS through strep.
Posted 7/9/2017 9:54 PM (GMT 0)

PeteZa said...
Hoagie, this is awesome and I hope that this new doctor works out. I think a lot of doctors are a tad bit weird. For goodness sake, they had their noses in books for years while I was partying, dancing and living a grand ole life. Their social skills can be lacking and to them I bet I appear brusque.

Anyway, good luck and you are in my prayers and in my prayer chain. Hugs of healing.

Thank you! He can be as weird as he wants as long as he can help me..lol
Posted 7/9/2017 9:55 PM (GMT 0)

Hoagie said...

Girlie said...
Hoagie - I'm still not doing really well...but getting there.


Lyme and co's - specifically bartonella - is known to be a cause of PANDAS/PANS
We have a member whose daughter was treated by a LLMD - she had PANDAS/PANS and after extensive treatment for Lyme/Bart/Babesia - she is healed. (3 or 4 years of treatment)

Sorry Girlie. I really hope you get to feeling better sooner rather than later.

That's really interesting about PANDAS. This woman told me that her sons were healed after 2 years of treatment. She was telling me they developed PANDAS through strep.

I am curious what abx were used for the strep and what else the treatment involved...maybe same abx as Lyme/Bart?
Posted 7/9/2017 10:51 PM (GMT 0)

physedgirl09 said...
Girlie I have a question for you,

Since you've been on treatment for so long, has the abx affected your stomach at all? I'm do worried about how the abx are gonna affect me negatively

No, my stomach has been faring well so far. With harsh ones - like doxy, I do take with food.

And, with minocycline - not because of my stomach, but my esophagus - I do better if I don't wait an hour before eating after....so I usually will eat after half hour of taking it.


Make sure you take your probiotics everyday.

I take different forms: Capsules (two types), and one that comes in little cups - like yogurt...but smaller , and I buy Kefir.
Posted 7/9/2017 11:26 PM (GMT 0)

Girlie said...

Hoagie said...

Girlie said...
Hoagie - I'm still not doing really well...but getting there.


Lyme and co's - specifically bartonella - is known to be a cause of PANDAS/PANS
We have a member whose daughter was treated by a LLMD - she had PANDAS/PANS and after extensive treatment for Lyme/Bart/Babesia - she is healed. (3 or 4 years of treatment)

Sorry Girlie. I really hope you get to feeling better sooner rather than later.

That's really interesting about PANDAS. This woman told me that her sons were healed after 2 years of treatment. She was telling me they developed PANDAS through strep.

I am curious what abx were used for the strep and what else the treatment involved...maybe same abx as Lyme/Bart?

I'll ask next time I see her.... As long as I remember. tongue
My memory has been really bad lately as well.
Posted 7/9/2017 11:29 PM (GMT 0)

Girlie said...

physedgirl09 said...
Girlie I have a question for you,

Since you've been on treatment for so long, has the abx affected your stomach at all? I'm do worried about how the abx are gonna affect me negatively

No, my stomach has been faring well so far. With harsh ones - like doxy, I do take with food.

And, with minocycline - not because of my stomach, but my esophagus - I do better if I don't wait an hour before eating after....so I usually will eat after half hour of taking it.


Make sure you take your probiotics everyday.

I take different forms: Capsules (two types), and one that comes in little cups - like yogurt...but smaller , and I buy Kefir.

regarding probiotics.... Have you tried fermenting your own pickles?

My wife has somewhat recently gotten into this. We tried our first batch a couple weeks ago. They were delicious. And full of pro Bs.
Posted 7/10/2017 3:22 PM (GMT 0)
My appointment with the LL Neuro isn't until late August. Is this too long of a wait, or standard?
Posted 7/10/2017 5:08 PM (GMT 0)

Hoagie said...

Girlie said...

physedgirl09 said...
Girlie I have a question for you,

Since you've been on treatment for so long, has the abx affected your stomach at all? I'm do worried about how the abx are gonna affect me negatively

No, my stomach has been faring well so far. With harsh ones - like doxy, I do take with food.

And, with minocycline - not because of my stomach, but my esophagus - I do better if I don't wait an hour before eating after....so I usually will eat after half hour of taking it.


Make sure you take your probiotics everyday.

I take different forms: Capsules (two types), and one that comes in little cups - like yogurt...but smaller , and I buy Kefir.



regarding probiotics.... Have you tried fermenting your own pickles?

My wife has somewhat recently gotten into this. We tried our first batch a couple weeks ago. They were delicious. And full of pro Bs.

I've never liked pickles... tongue
Posted 7/10/2017 5:08 PM (GMT 0)

Hoagie said...
My appointment with the LL Neuro isn't until late August. Is this too long of a wait, or standard?

That's actually not a very long wait...
Posted 7/10/2017 6:43 PM (GMT 0)

Girlie said...

Hoagie said...
My appointment with the LL Neuro isn't until late August. Is this too long of a wait, or standard?

That's actually not a very long wait...

Thankssmile
Posted 7/10/2017 7:19 PM (GMT 0)
Hi, Hoagie. I am new to this forum. I went to a doctor on June 26th for a terrible circular rash where a tick once had been. I had had it for a week or two prior to that. I have been having knee issues and am having trouble walking. There is mild pain radiating in both legs. I initially went to an after hour care center and got a month's supply of antibiotics, but I am not sure if that is enough. I meet them again on the 26th of this month for blood tests. I wish you luck. I hope I don't have it either. Girlie seems to think I do as I have a circular rash. I hope you get better. I am fifty and I too attributed bad knees to age and weight. Take care.
Posted 8/8/2017 5:30 PM (GMT 0)
Update...

The issues in my legs haven't really gotten any worse, but the left leg is much more affected than the right.

Anyone else had issues with just one side of their body? Or more on one side than the other?
Posted 8/8/2017 5:33 PM (GMT 0)

Hoagie said...
Update...

The issues in my legs haven't really gotten any worse, but the left leg is much more affected than the right.

Anyone else had issues with just one side of their body? Or more on one side than the other?

Yes, my left side is where it all started (Left side of neck, shoulder blade, arm, hand) and it's still my worst symptom.

I also had the tingling, sore jaw/cheek on the left side only.

Only left rib hurts

One sore, swollen lymph node - only in the left Clavicle area.
Posted 8/8/2017 7:44 PM (GMT 0)

Girlie said...

Hoagie said...
Update...

The issues in my legs haven't really gotten any worse, but the left leg is much more affected than the right.

Anyone else had issues with just one side of their body? Or more on one side than the other?

Yes, my left side is where it all started (Left side of neck, shoulder blade, arm, hand) and it's still my worst symptom.

I also had the tingling, sore jaw/cheek on the left side only.

Only left rib hurts

One sore, swollen lymph node - only in the left Clavicle area.

Thanks Girlie!
Posted 8/9/2017 1:22 PM (GMT 0)
Hoagie - that seems to be typical for people. My left side is also my worst. I do hear people complain about one side more than the other and usually it seems to be the left side. I had similar symptoms to yours at the beginning, issues with gait and walking mainly on the left. Also most of the pain, twitching, cramping, atrophy, etc. is on the left (foot, leg, chest, arm, hand).

You are nearly guaranteed to have Lyme based on your history and symptoms, regardless of what the labs show. The mental aspect of my body being damaged has been the hardest for me to recover from. Since this started 14 months ago it seems like you're in for the long haul, wouldn't expect a miracle on getting your rhythm back anytime soon. I wasn't as bad as you and it's been 2 years since symptoms started and I started abx 6 months after I was infected. I still have a bunch of issues. Gotta be patient.
Posted 8/9/2017 5:23 PM (GMT 0)

Girlie said...
Hi Hoagie - Good to hear that you have an upcoming appt. with a LLMD.

about 4 months after symptoms started, I developed a tremor in my hands. I was still working at the time and one morning as I went down the stairs, I noticed my legs were quite weak...and a bit shaky.
On my way to work I stopped at a red light...and my right leg started to shake so bad that I was worried I wouldn't be able to keep the brake pedal depressed.
That was when I decided I wasn't safe to drive...and stopped working.

It did get better - actually even prior to starting treatment the leg shakiness subsided - I was able to start driving again - but I was still quite weak...until I started treatment. After many months of treatment, along with rehabbing, my strength started to come back.

This sounds eerily similar to what I have experienced. I too have some tremor in my hands, but it is limited to thumbs and forefingers, and only when in certain positions against gravity. I noticed it a couple months into my symptoms, which before were pretty much limited to my lower legs and feet.

I also experienced the weak feeling rubbery legs intermittently, as in one day they'd feel shaky and the next perfectly normal. That has disappeared after being on a homeopathic remedy, which I assume has helped. This was quite disturbing for someone like me that regularly plays full court basketball and rides my bicycle around the hilly towns where I live without ever having any leg issues whatsoever. That's gone but I'm dealing with other nasty things now.
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