I can walk, I look fine and I have no other body wide or muscle pain.

My MRI's - 3 sets, don't show 'obvious' chiari - but how in the hell does a person who 'doesn't think she was ever bitten by a tick' who was very active & healthly & never had headaches or head pain previously - all of a sudden become 'disabled' with pain and fatigue in less than 2 months....

This seems crazy.......

My pre-illness diet was basically the anti-candida diet - now I'm eating anything just to 'hold on' to my weight, since it dropped 20lbs in 3 months.

I am so confused.....it seems like lyme causes so many 'body-wide' issues in most people.....but not me - just my head & brain - so maybe this isn't lyme?

Yikes, what is it?

Sis

I hear you loud & clear. Yes, according to what I've read, it's possible to have neurological Lyme without arthritis & without remembering a tick bite.

That was always my question, too? How does a healthy person at age 34 go from working full-time, going to college, raising a son, & then poof----can't work anymore.

Well, I was misdiagnosed with myasthenia gravis from 1989 to l994, but I knew things just didn't add up with this diagnosis. Something was amiss-----big time.

"They" decided I was just depressed-----you know, all the "classic" symptoms!!! DUH!

I could never understand why no physician [who is suppose to be a "scientist"] would ever sit down & try to figure out how I went from "healthy" to can't work------yet, I didn't know why I couldn't work. (of course, I had the overwhelming fatigue, insomnia, neck weakness, facial pain, etc. that prevented me from working)

But what was the plausible reason for not being able to function?------i.e., sleeping until ll am; things just got weirder & weirder.

It just didn't seem to bother anybody. How could this happen and it be o.k. with everyone? Well, it happened & I feel like I've walked in your shoes.

Now, at 49, I have secondary problems due to the Lyme such as a reactive arthritis.

The "expert" rheumatologist in Dallas didn't care what was causing the reactive arthritis.
Was it a bacteria----something had to cause it. It was Lyme. Yet, I don't have arthritis or think of myself with arthritis.

True, my neck is full of toxins, I suppose & it didn't look great on x-ray; all due to Lyme. On certain antibiotics, the neck gets very, very hot to the touch.

Anyway, my problems are from my neck up pretty much. Over the years the infection has creeped down into the back muscles & into the upper muscles of my arms. But the muscle involvement is better --- not cured.

I've been treated for Lyme. We're now treating for Babesia which causes problems in the brain. The Mepron made me goofy. However, Babesia can be silent & it will impede your treatment progress.

After completion of the BABS treatment, we'll resume treatment of Lyme.

Eventually, I want to be tested or trial-treated for Bartonella & even Erlichiosis. It's just that the neurological problems have been so bad & we almost missed the Babesia. (I did have shortness of breath & fast heart rate)

My Bowen Test for BABS was negative, but I'm to take 3 bottles of Mepron/Zith & return to LLMD.

As for the head pain: My LLMD said most Lyme patients have some degree of Lyme meningitis. But it is aseptic. It is due to inflammation-----so you don't run a fever with those horrible head pains. (Not headaches----Head pain!)

I believe especially when the back of your head hurts & your forehead at the same time-----that is lyme encephalopathy. It is changes in mood, memory & sleep. I have problems in all those areas.

However, you can see 50 DOCS & only your LLMD will tell you that & explain this.

Just my opinion, but Lyme always causes a chemical depression in neurologic Lyme & antidepressants will help you out until you're better. Don't suffer if you need to take them. Some are calming & some stimulating. My brain was so low on electricity on Brain Mapping that I did need Wellbutrin. It's extremely strong; start at low dose. Some can't take it.

But even on anti-depressants that infernal infection rages on without treatment with antibiotics.

Have you had a chance to read any of the articles about neuroborreliosis (neuro-Lyme)?

I'll try & send you some links. I'm still learning how to send stuff, so I'm slow.
I hope this helps somehow & you know you're not alone.

Let me know if I can help in some way.
Take Care from Texas,
Jan

However there are many people who have been tested for Lyme and been negative, and had Arnold Chiari, and went through the surgical procedure for it and recovered well and never had an issue since.

Forgot to mention that severe eye problems can sometimes be related to Bartonella. Just a thought.

List of articles about neuro-lyme:
http://www.lymeinfo.net/neuropsych.html
(great site provided by Cave76)

http://www.mentalhealthandillness.com/tnaold.html
"The Neuropsychiatric Assessment Of Lyme Disease by Dr. Robert Bransfield.

http://www.actionlyme.com/CHRO_WALLACE.htm
(you'll need to scroll way, way down to Neuroprotection Heading on left column)

http://www.ariplex.com/lyme/lymbleie.htm
(article by Dr. Bleiweiss; scroll down until the part about neuro-lyme starts. The paragraph starts....Limbic encephalopathy...,)

There are tons more on the internet ssearching for neuroborreliosis, especially articles by Dr. Brian Fallon.

Hope these might answer some questions, too.
Jan

[This message has been edited by RECIPEGIRL (edited 29 July 2004).]

15 months now into abx, my problems are now going away and I see the light at the end of the tunnel.

No more headaches, no head pressure, no vertigo ( unless Im herxing) and no neck pain. I don't really even get the burning at the top of my head anymore.

you have the same exact, i would even discribe it the same symptoms. the head and neck stuff stinks , it is so hard to function w/ dizziness, blurry vision, head, and neck tightness, i also see alot of floater, my left had shakes alot, i have avery high heart rate too, also the trouble breathing.

i would go w/ the llmd too. these smptoms are crazy, no one else sees them so we all must suffer alone, but hopefully get through it together. i am about to start iv abx, soon as my llmd gets it coordinated that is . keep us posted as well as we will you.

What causes burning at the top of my head and stinging burning at base back of head? Bart? Babs? ??

I start ketek next week, so heres hoping it helps. Right now I don't know where I am at. I don't think I am depressed, but a little paranoid. I just don't want to see anyone or do anything. No joy in anything. Just concentrating finding a little work and trying to catch up on back bills.

Had spinal tap, funny odd weird procedure. Didn't hurt too much, but mild weird headache for 3 days, plus lots of large floaters and fly by object, middle of back tender, first day afterwards tiny sharp stabbing pains in shoulder blades, but feel pretty good today. Most lyme symptoms with pain in joints, etc., all came back but have lessened greatly by today. Insomnia some days and then others sleep for 9 to 10 hours.

SisterSue2,

I had horrible head pressure & pain, neck pressure, face pain,nerve pain in head & face, a 'tightness' all around my head, fatigue, difficulty breathing, vision issues, floaters, vertigo, confusion, difficulty concentrating/ focusing and brain fog and thought it was just stress and fatigue. Most of the time that is much less and on some days very mild. As for "imbalanced", haha I thought that I "unbalanced" Now I know I really was.

You will get better, just remember you will get there in your own good time. We have all been there.

God Bless and take care,

The burning on the top of my head was yeast. Actually, 99.9 percent of my remaining problems ended up being yeast, so I think and hope anyways.

I have discovered that my head pressure and headaches is more than probably yeast, but it doesnt help that I started the anti candida diet AND my new ABX (Biaxin XL which has antiinflammatory properties, ) on the same day.

I can never seem to start one thing at once, I start everything at the same time which doesnt help me in the long run.

Head symptoms are the hardest to get rid of *sometimes*. Whatever came FIRST is usually what takes the longest to get rid of and A LOT of time.

If you dont treat it, more problems add onto it as it disseminates more.

quote:

---

The burning on the top of my head was

---

The M. Fermentans was developed (by US Army, Dr. Lo) as a biological which causes brain cell death and brain inflammation. This causes a great deal of head/neck recurrent menningitis type symptoms. For Lish when we treated that, the burning at the top of her head also went away. We believe this was her cause of much of the head pain and much of the cognitive issues she has had.

So, yes, I think you can have lyme without joint pain.

But, the fatigue and daily headaches for me were definitely related to babesia. Both got better after treatment.

In fact, many of my neuro symptoms got much better after I was treated for babs: Including the neck/shoulder pain, eye problems, brain fog, cognitive and memory problems, facial twitching, insomnia, dizziness. Shortness of breath and heart palpitations are also babs symptoms.