This is topic in advance this is kinda long please forgive me I'm new......... in forum General Support at LymeNet Flash.


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Posted by Sweetbee20055 (Member # 36953) on :
 
A Pain Clinic specialist at my local hospital ordered the lyme test. (from Igenex) I grew up in jersey. I have wide spread muscle pain most of it in my neck/arms/upper back but if you even touch my shins they hurt or sides of my legs. It gets worse every year (I'm almost 39) I have chronic depression that responds to virtually no meds (been on at least 20 since i was 17 years old) And my brother got a pretty bad strain of lyme - all his joints are affected badly. So the test came back and it tested slight positive for a few bands and "inconclucive" for another. The specialist wont tell me anything other than that until he has XXXXXX Dr. look at them. Do you know what that means? The last thing I want is subpar care for this. Thank you for responding to me, any and all help for these symptoms that Drs have sent me to therpy and therapists for YEARS, could Lyme be the reason why nothing works long term??? Also since i was 15 i have had chronic gastritis- or inflamation of the stomach- you cant put your hand on the front of me with any form of pressure at all- im on meds twice a day for it and got mono "twice" and am CHORNICALY tired (no sleep apnea- was tested) My symptoms are at their worst ever.
 
Posted by 17hens (Member # 23747) on :
 
Your story sounds much like mine.

I've been diagnosed with lyme (borrelia), babesia, ehrlichia, bartonella and ebstein bar virus.

You should ask on "Seeking a Doctor" to find an LLMD, lyme literate doctor.

I did read that momlyme sees a very good one in Vermont. You could PM her and ask.

With the correct treatment, you can get better. Never give up.
 
Posted by steve1906 (Member # 16206) on :
 
Hey Sweetbee, copy and paste your post in (Medical Questions). That's were this question should be, and you'll get many more responses.

Changes are you have Lyme and maybe (Co's).

One more thing - write shorter paragraphs. Many with these diseases can't read long paragraphs.

Ask for a LLMD in (seeking a doctor).

Keep posting and asking questions!
 
Posted by glm1111 (Member # 16556) on :
 
Breaking Up For Easier Reading

quote:
Originally posted by Sweetbee20055:
A Pain Clinic specialist at my local hospital ordered the lyme test. (from Igenex) I grew up in jersey.

I have wide spread muscle pain most of it in my neck/arms/upper back but if you even touch my shins they hurt or sides of my legs. It gets worse every year (I'm almost 39)

I have chronic depression that responds to virtually no meds (been on at least 20 since i was 17 years old) And my brother got a pretty bad strain of lyme - all his joints are affected badly.

So the test came back and it tested slight positive for a few bands and "inconclucive" for another

The specialist wont tell me anything other than that until he has XXXXXX Dr. look at them. Do you know what that means? The last thing I want is subpar care for this.

Thank you for responding to me, any and all help for these symptoms that Drs have sent me to therpy and therapists for YEARS, could Lyme be the reason why nothing works long term???

Also since i was 15 i have had chronic gastritis- or inflamation of the stomach- you cant put your hand on the front of me with any form of pressure at all-

im on meds twice a day for it and got mono "twice" and am CHORNICALY tired (no sleep apnea- was tested) My symptoms are at their worst ever.


 
Posted by Keebler (Member # 12673) on :
 
-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.

==================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.

===================

http://www.thehumansideoflyme.net/

The Human Side of Lyme

- explores the neurological and toxic ways that lyme and other tick-borne infections can affect emotions.
-
 
Posted by Keebler (Member # 12673) on :
 
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You mentioned shin bone pain. So does he:
-----------------------

http://cassia.org/essay.htm

When To Suspect Lyme Disease

- by John D. Bleiweiss, M.D.

Excerpts:

. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . . .

[fourth paragraph from end - talking about the shin bone:]

A very helpful diagnostic maneuver is palpatory tenderness of the medial tibia shaft due to periostitis (inflammation of the tissue around the bone if not the bone itself).

Periostitis is also common in another spirochetal disease, syphilis (Textbook of Medicine, Ed: Kelley, 1989, p. 1587) and is responsible for the bone pain that both syphlitic and Lyme patients experience.

Tenderness is easily elicited in 95% or more of LD patients simply by pressing the bony aspect of the thumb joint against the medial aspect of the tibia about 3-6 inches above the ankle.

The intensity of the pain experienced by the patient can vary, but is often exquisite and will cause the leg to recoil abruptly. The pain often lingers after this procedure. . . . .

- Full article at link above.
-------------------------------------------

The spacing in this article makes it very difficult to read.

It may help to have a friend copy & paste it to a word program, add in some white space (breathing room for the eyes and for the brain) . . . and print it out for you.

This is the very best article I've ever seen that has described so many of my experiences with such accuracy.
-
 
Posted by Keebler (Member # 12673) on :
 
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You mention: chronic gastritis- or inflamation of the stomach.

First, it appears to me that lyme is very likely the key to this. I would bet on it. Lyme can really wreck the stomach and cause "Leaky Gut" which can be very serious and painful.

You said your doctor said "Slight positive" on some bands -- well, those bands are,indeed, POSITIVE. Do they tell a pregnant patient she is just a "slight positive"?

But all that is explained in the "Diagnosing" thread, linked in previous post.

However, there can still be other things going on, too.

I assume they have assessed you for celiac disease, an inability to handle gluten (in wheat, spelt, rye & barley).

I'm hoping that if a GI biosopy was done but, if that came back negative that they still went on to do a genetic test.

Even if that returned negative, I hope they suggested you try a gluten-free diet. And also a casein-free diet.

If not, they should have. Wonder if you've been this route, as even if the tests are inconclusive it may prove helpful.

Most LLMDs strongly suggest their patients go gluten-free, even if not a "true" celiac.

Stopping gluten cleared depression for me in just a couple days. Amazing.

No antidepressant over the years ever worked, either, but every one of them just made it so much worse for me(likely due to the liver stress of the Rx - an overwhelmed liver can cause depression).

Stopping gluten also lessened pain substantially (though lyme can still make pain very rough, it's just at least tolerable being off gluten).

Google: Hidden+Sources+of+Gluten

See: www.celiac.com & www.celiacsolutitions.com

and

Casein+intolerance+symptoms

--------

PARASITES should also be considered. They often travel with lyme. Best to have a LLMD discuss this with you.

More and more LLMDs are becoming aware of the parasite involvement with lyme. But not all of them. Best to find a LLMD who has studied this area, too.

=================================

You mentioned pain. Hope some posts here help:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management
-

[ 03-31-2012, 02:06 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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SweetBee (love your name, by the way)

Glad to see you have posted in "Seeking a doctor"

Best of luck to you. This is all very complex and it may not get easier for a while, but know that many have regained their lives. It is possible.

Hope you find a good expert to shine some light.

Take care.
-

[ 03-31-2012, 02:08 PM: Message edited by: Keebler ]
 
Posted by Lymetoo (Member # 743) on :
 
moving to Medical Questions
 


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