Thanks again for any ideas.

It's understandable that these symptoms would greatly overlap. That's where the expertise of an LLMD can make the difference.

Walking around with undiagnosed Lyme is a high stakes venture you want no part of. Traditional DOCS can prop you up with some sleeping pills, or antidepressants for years, but the infection rages on.

Your case is very complex, but a red flag has already gone up in your mind alerting you to research Lyme.

You're young & have this incredible gift of youth. Who knows what wonderful things in life await you? Don't wait another month or another year to seek out a LLMD.

The Lyme tests many times serve as a trap & a deception. You walk around thinking you're fine----- yet the infection goes on reaking havoc.

I lost a year of treatment & worsened during the interim because I believed my negative "LYME TESTS" meant I had no Lyme. I was so wrong.

Forget the tests for now. A new infection won't show up as positive for several weeks.

LLMDs know exactly what they're looking for & will ask you even more questions than are on the symptom list from Dr. Burrascano's Guidelines. They'll also check you for co-infections which are many times below the radar screen.

Anyone with a chronic condition like you should always be seen by an LLMD to rule out Lyme. Over time, LD will worsen any condition you already have as it hits every organ.

This bacteria can travel better through tissue than in blood; it's a deep tissue infection -----which could really affect your EDS. They love their hiding places --- joints, tendons, muscles & skin.

Untreated LD can eventually make your skin take on a parchment paper-like appearance. The back of my hands look like this. It happens so gradually that you don't even realize it's there.

Take charge of your health & find an LLMD----that's really the key to the answer you've asked.

Here's a website I hope you find helpful about Lyme Diseae & Connective Tissue Diseases:
http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html

You should land at this heading: Lyme Disease & Connective Tissue Diseases. There are about 9 articles listed here.

Also interesting is a 1992 article in the periodical, "Neurology", that states that disturbances in memory, mood, and sleep, is a common late neurologic manifestation of Lyme disease. (I suppose your view would depend on whose research you want to believe & which LLMD you ask!!)

You have to remember Lyme is insidious. Oh so slowly you begin realizing that things are a bit tougher & you begin to slip in ways that a healthy young man doesn't have to deal with.

I hope you don't have Lyme, but simply on the basis of having another chronic condition is reason enough to check it out.

Tell us how we can help. Keep asking questions & by all means, let us know what happens.

But never, never forget the great price many of us Americans have paid for not seeking aggressive treatment early on.

If it does turn out you have Lyme, then you are one of the missing millions we are trying to reach.
Take Care,
Jan

quote:

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Originally posted by RECIPEGIRL:
[B]You have to remember Lyme is insidious. Oh so slowly you begin realizing that things are a bit tougher & you begin to slip in ways that a healthy young man doesn't have to deal with.
[B]

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Thanks Jan, but I'm a girl (Tori aka Victoria)! :P
I have EDS III. I have no reason to doubt this dx because, although there is no genetic test for my type, I have all the symptoms. Also, both my mother and uncle have it.
On my EDS board, one poster wrote "What are the chances of having two rare diseases?"
I guess that's how I feel now. I wonder what my chances of having both are. I also wonder if treating for Lyme would have any effect, as I would still be feeling the joint pain, etc, from the EDS.
I don't want to have Lyme, any more than I want to have EDS. And Lyme is so controversial... even more so than when I was originally diagnosed with CFIDS.
I also want to have children (soon) I'm 25, and don't want to wait through years of treatment that may not be needed.

So that's my story. Ain't I cheery?

After three years of aggressive lyme and associated tick illnesses, her "connective tissue" disorder has diminished and she is no longer in great pain all the time.
She actually is on a rock climbing team, riding her horses and water skiing with no connective tissue issues.

It has been said, and I will try to find the supportive documentation, that lyme disease "LOVES collegen" because A) its a good food source and B) it hides it from the antibiotics due to lack of blood supply in collegen tissues.

They suspect the with me since I am dysautonomic. It can be very serious, not to scare so do your reserch. Try to get under control, soon as poss. Which is not easy so little is known.

My body pretty much reacts the opposite to most things, that is norm for others.

I get exhausted with all the dxes I am given.Including big time musclular prop.

Fri. another call telling me I am on verge of stroke due to blood test results.

I do not eat fatty food, fried,whole milk cheese. Matter of fact little appetite for anything since last bite.

Prob. due to gene`s & hypercoagulation from illness.

Actually when I take meat out of my diet cholesterol shoots up. Go back on it it goe`s down. Yuck, another pill. It has been high since I got ill. Another showing how for most life till illness, hard worker,athlete, watched what I ate before it was popular. May just be another sign how my bod works opposite.

Usually ED has a certain type of Jewish backgroung.

My friend who 20 yr. ago had Rocky Mount. Then dx yrs. later with fm,severe. Then Ed, he know has to have a trach. Scares me littl.

Good luck, let me know what they come up with.

Huggggssss

Listen, I don't doubt your diagnosis of EDS at all. I simply had no idea how many of your family members had this.

I just found some sites about Lyme & Connective Tissue Disorders & was hoping that it would perhaps offer l small clue that you might be looking for. Wish I could have done more.

Kerryblue responded. He called it ED, but with the Jewish heritage involved, is he talking about FD - Familial Dysautonomia?

Sorry, but I'm totally in uncharted waters.
Ya'll are gonna have to set me straight on all this.

Tori, I hope you find all the answers you need so you can enjoy those sweet lovely babies. Best of Luck!

My son is 21 years old & he's still my baby.
Let us know how you're doing.
Take Care,
Janet

NOTE: One is a disorder

One is a disease

If you have a positive test or a clinical diagnosis for Lyme, then I'd say that you have the disease and not the disorder.

But, I am not a doctor nor do I even play one. Your very best thing to do is to get to a real LLMD ASAP!

You've been given a lot of good advice above.

The doctors I've seen over the years have also seemed shocked when they saw how bad it was. But no one could really give me an explanation.

I have not noticed much improvement since I was diagnosed for Lyme and started meds, what I have noticed is that when I'm herxing the pops and creaks get much louder and much worse. So I am thinking it was Lyme all along.

Even more disturbing to me is the fact that all three of my kids also have the same thing. My husband does not and neither do my mother or father.

Let me see if I can do it again.

I am thinking that Lyme is not that rare anymore. Just underdiagnosed and not understood by the public and medical community.

I read and re-read this post and have never heard of EDS or the other.
My 13mth old has had some of these signs since birth.
Matter of fact when you would hold her about the first 6 or so months of her life,she would hold her arms would be so far back, it was as if her torso was turned the wrong direction, not her arms. (run on sentece!)
As I was dressing her yesterday, I was putting her arem in the whole and it went snap, crackle, pop. She started crying.

Wonder about her and what kind of test would be run if any?

quote:

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Originally posted by moosiefate:
Hi-
I posted this on the other board I go to, for Ehlers-Danlos Syndrome. Does any one here have both Lyme and a connective tissue disorder? I am just wondering because of the overlap in symptoms, whether it could be both or it's just the connective tissue disorder causing symptoms similar to Lyme.
Thanks for your input!

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I definitely think that the connective tissue disorder is caused (or magnified) by the Lyme. My elbows, shoulders, hips, and knees all pop now. And I have never had any problems with my connective tissue and joints until my lyme symptoms started a year ago. All it takes for me is to lower something that weighs around 10 pounds, and it feels like my tendons are stretching to the point where my elbows are being separated from my biceps and forearms.
I can hear my shoulders pop sometimes while lying on my side. When I bend down to pick something up, my right knee pops and cracks. My jaw pops when I yawn. My throat clicks and pops while swallowing.
And it all these things started happening fast; and all came on during a short period of time, one symptom after another.