However, I have a couple conditions that I have not found any information about here and I wondered if someone had similar experiences and if so, are there any known remedies?

1. Every part of my body is acutely sensitive to any form of contact and reacts with a neurological inflammatory condition immediately.
Example: Elbows resting on my thighs, arm resting on the diningroom table while eating, palms of my hands resting on the keyboard right now, holding a book in my hands, having my wife lean her head up against my shoulder etc etc. Every time I will get a red, very warm and painful impression ("footprint", if you like) where my skin touched this secondary object. Or if it is elbow on thigh then both the thigh and the elbow will show this indentation and be darkred and burning. It is so detailed that if I held around a Quarter ($0.25) you can literally see the lines of the face embossed on the coin. Also, when in bed...any part of my body that is in contact with the mattress and applied pressure to, will exhibit this redness and burning and pain. My wife puts me to bed with big blocks of freeze-packs as these keep me slightly cool so I can have a go at falling asleep.

When not doing anything, all is well. My hands are fine until I start typing here. Now, turning them around, the area of my palm that rested on the keyboard is inflammatory dark red and burning with pain.

WHY?

2. Does anyone have trouble with deep throbbing pain in their big bones when pressure is applied? I can't sit for more than a few minutes by the dinner table as the big skeletal bones in my buttocks (excuse the laymen terms here..) hurt som much that I have to stand. I stand next to my wife when we watch tv as I can't bear sitting because of the burning and the pain in the bones. Same thing right now, sitting at the computer. I have two big plush pillows under me and it still hurts like heck (in the bones themselves, not the muscle nor the skin..)

So...don't mean to spill my guts here, but I haven't read much about anything similar so I was curious as to your experiences.

Lastly, no-one says much about their glands being swollen (neck, armpits and groin area..). Am I the only one?

Do any of you recognize any of these symptoms and do you know any good remedies?

Please keep the threads short and concise.

Any help is appreciated. Thank you.
 

sorry for your pain. THe burning and the swollen glands go hand and hand with the coinfection of bartonella, and none of the abx you mentioned will touch that.

do you have a llmd? if so , then even if you don't test positive for bart, which most people don't, he may put you on abx empiraclly to help you with this...

when i herx from bart I get this burnign and skin sensitivity, along with the lymphh gland swellings really bad...but neer to the extreme you're having them..

please find a good llmd who will take a good luck at the chance you have the coinfectiion bartonella dn treat it for you. testing is n=just not accurate.

I'll keep you in my thoughts and prayers...

LIsa
 

In your experience, what does work against Bartonella?

Thank you for your reply.
Michael.
 

#1. This one is why my husband left. He never could understand how much his touch hurt me, thought I was making it up. Soma, Vicodin, long doses of antibiotics, and biofeedback to ramp down the overreactivity of the nervous system (dorsal horn wind-up)have helped.

#2. I'm fortunate not to have bone pain, but it is common.

#3. I have lots of swelling in all glandular areas. After starting antibiotics, it got worse. My knees looked like I had kneecaps front and back. My doctor said it is partly due to an increase of cellular debris in the lymphatic fluid.

So, more antibiotics, drink LOTS of fluids, walking or lymphatic massage or dry brushing, and, once again, biofeedback with deep breathing. Walking and deep, diaphramatic breathing are the biggest pumps for the lymphatic system.

Fortunately, even though I'm not much of a walker, I can still breathe!

As others have mentioned, be sure you are checked and treated for all coinfections.
 

I can relate to having a symptoms not commonly discussed or known about...my docs just shrug their shoulders and haven't got a clue what to do with me most days...

I was doing really well (after much treatment)when all of a sudden I started having my worst Lyme symptoms return...but only if I ate...If I starved myself, I felt just fine...

I suddenly became "allergic/sensitive" to every single food...then when docs tried to put me on IV nutrition, we realized I was "allergic" not just to all foods but actual individual nutrients...so I couldn't even tolerate my IV initially...

Still struggling with this...On limited IV nutrients now for over 6 months...Other people get MCS...multiple chemical sensitivity, and you have some sort of touch sensitivity...but there has got to be a connection between our sudden sensitivty development!!

Through some "alternative" testing, we're thinking a combination of co-infections that are doing this...For me, Bartonella, Rickettsia, Q-fever, and possibly a touch of Babesia...but the hitch is, I can't tolerate meds or supps now anymore either...

No suggestions as of yet, but just wanted to share that I can relate to the frustration and worries with having "unusual" symptoms...

Kira
 

And yes I have always had swollen glands. It's nice to know that lots of other people feel the same way.

Good luck with your treatment.

Nancy

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And yes I have always had swollen glands. It's nice to know that lots of other people feel the same way.

Good luck with your treatment.

Nancy

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2. I used to get that big bone pain, and now I only get it when I'm herxing, usually through my sciatic area and down my leg.

3. Lymph swelling - very common and I still get it when I herx.

I've been treated for 3 months now with Flagyl and Rifampin, as my LLMD suspects Bartonella and Lyme. My WB was positive for Lyme, and 3 rounds of tests for co-infections have come up negative... LLMD treating me for the Bart anyway. And I have to say, I've made huge progress (except during my monthly herx).

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Julie G.
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lymeinhell
 

I bought a two inch thick pad for our bed. It helps so much.

Tempurpedic sells entire mattresses, but you can research online and find other mattresses that are less expensive.

Or, if your present mattress is fairly new and in good condition, you could get a memory foam pad to use on top of it.

Here is one: http://www.boscovs.com/commerce/find.asp

I've also seen memory foam pads to sit on.

Hope this helps.
Carol

[This message has been edited by Carol in PA (edited 27 May 2004).]
 

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Kathy C
 

2. I haven't experienced any big bone pain that I know of. I do have an occasional shallow dull burning pain from behind my left lung near the spine that has been coming and going for atleast 4 years. Went to the doctor about when I first noticed it. They did xrays and said they couldn't find anything and looked at me like I was crazy.

3. I do have minor swollen glands under my armpits that are occasionally painful. I am not sure if the swollen glands maybe the cause for the numb fingers.

I have a symptom I have not heard many people talk about. It seems like I am belching constantly probably due to yeast. I have had a terrible time trying to cure my furred tongue for the last 9 months. I have tried everything. Really now it seems with my minor symptoms from Lyme that yeast has become a bigger problem than the Lyme.
 

What did you take to get rid of the h pylori?
I asked my LLMD about that, he said if you have it, the medicine you are on now will kill it.
 

It doesn't taste very good (understatement) and it'll make you spit a lot for a few minutes but it does the yeast in for a couple of days in my case.

Charlie