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Could elher danlos be congenital lyme disease, or fungal infection?

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Posted 2/12/2019 1:18 AM (GMT 0)
I have elher danlos and i think i had lyme since a child. Lyme is a connective tissues destroyer so... it could be posible that elher danlos would be a non exist syndrome but congenital lyme disease mixed with other patogens... If we see the symptoms that a person can have with eds... It's the same that lyme.... POTS, heart problems, nerve problems, pshyquiatric problems etc... What do you think guys? I have EDS and lyme... Or i have lyme by itself and EDS is an undiagnosed lyme?
Posted 2/12/2019 1:48 AM (GMT 0)
OriolCarol - I think it’s possible that the Ehlers Danilos could be caused by lyme

Reason for my thinking this:

My son had flexible joints as a child - elbows could bend backwards .. and knees too. Not extreme but it was there - and he was behind in strength for his age.
He often would trip and fall when he was running.
He never had the other issues you mentioned though (pots, heart, psyche )
When it was found he was anemic and we couldn’t raise it by supplementation - we investigated and was tested for so many things... finally many years later (I’m thinking 9 years) he was diagnosed with celiac disease (very high antibodies )

Surprisingly the flexible joints went away - he’s strong now and all along it was caused by his intolerance to gluten.

So how long have you had the ehlers Danlos symptoms?born with it?
Posted 2/12/2019 2:36 AM (GMT 0)
My friend just got diagnosed with EDS and she has Lyme but it isn't congenital. Not sure if they're related but it's definitely possible as Girlie said, though she is not gluten intolerant
Posted 2/12/2019 2:40 AM (GMT 0)
Not sure if I was clear - my son doesn’t have lyme (well not that I know of)
But he did have ehlers danlos caused by celiac disease.

So my point is something could be causing OriolCarol’s ehlers danlos - ie lyme
Posted 2/12/2019 3:40 AM (GMT 0)
I think it is possible that EDS could actually be lyme and bartonella. I am not familiar with the multiple types of EDS and how they are diagnosed by a physician though. Maybe there is a true EDS that is not driven by pathogens? Regardless, two important articles for you to check out on the subject.

Also, by chance did you get the gardasil (HPV) vaccine? It is known to cause EDS like symptoms. It did for me... popping / cracking joints. However, the joints have responded to antibiotics, so I am hopeful to make a full recovery after I am finished with abx.

https://metabolichealing.com/lyme-disease-co-infections-the-assault-on-your-connective-tissue/?fbclid=iwar0dhuhrqkgmdj60ekaqpn97hb7vrzror47khyqx5jqgt5uxefyndkiejhu

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5944489/
Posted 2/12/2019 1:42 PM (GMT 0)
EDS is a genetic disorder, diagnosed exclusively with genetic testing.

Are you positing that Lyme influences a person's epigenetics to give them the condition? The symptoms do overlap a lot, and I certainly have had EDS brought up to me by doctors who don't believe that Lyme can be chronic, and I stubbornly have not been tested by a geneticist. I know that eipgenetics is a relatively new field of study, so I'm sure we're primed to learn soon about how many genetic conditions can be caused or influenced by infections and toxins and even trauma. But once a person had EDS - whether it happens by epigenetics or not - they have a genetic condition, and treating Lyme will not make their symptoms go away.

At least, this is my understanding. Many conditions mimic Lyme in their symptoms, and the medical community is in its infancy in terms of understanding which diseases are related and now and how to treat them (as anyone with chronic Lyme can attest, right?). And of course Lyme plus EDS would be worse than either one alone!

A good friend and her child have EDS, and to hear her and I talk about our health, you'd think we had the same diagnoses. :-/
Posted 2/12/2019 5:57 PM (GMT 0)
With my son no genetic tests were done....

He had some symptoms consistent with EDS which was brought on by celiac disease.
Posted 2/12/2019 5:58 PM (GMT 0)
Long time since I posted here but I actually have something useful to add haha...look up Sharon Meglathery and the RCCX Theory as it pertains to EDS, Lyme and a host of other diseases and conditions that may be interconnected.

Here is her website and there are some really great discussions going on Facebook too...you just have to find the page.
Posted 2/12/2019 5:59 PM (GMT 0)
[https://www.rccxandillness.com/]

Woops...
Posted 1/8/2023 4:03 AM (GMT 0)
My daughter was born healthy and i was told that she had piano fingers by a nurse. Arachnodactyly is what it really is. She was perfectly healthy until she had a tick bite around 8 yrs old. She went down hill from there. I begged for an antibiotic but was told she needed more symptoms. She only had slight lymph swelling in the neck. Started having back pain by 10. Now it looks like EDS (testing soon) POTS, digestive issues, fatigue, dehydration and anemia. What I’m going to say here should be shouted from the roof tops. If you or someone you love has any signs of hypermobility, connective tissue disorder, flat feet, etc.. do not get bit by a tick and if you do you better get an antibiotic before you test negative or positive! Have it on hand would be best. You already have weak stretchy c-tissue and thats what the spirochete eats!! It is a life filled with suffering. You can be born with a connective tissue disorder and live perfectly until you get an infection and then you’re screwed. Now i have Lyme in the tendons and so far nothing is working to rid me of the scourge! I took the antibiotic just a bit too late and now I’m screwed. I Will continue to try everything out there until we’re cured.
Posted 1/8/2023 8:31 AM (GMT 0)
“Now i have Lyme in the tendons and so far nothing is working to rid me of the scourge! I took the antibiotic just a bit too late and now I’m screwed. I Will continue to try everything out there until we’re cured.”

It’s not too late.
What antibiotic(s) did you take and for how long?
Posted 1/8/2023 12:37 PM (GMT 0)
EDS comes up here and on other lyme related forums too often for it to be coincidence for what is supposed to be a rare congenital condition

i think its most likely that - although a pure genetic condition that causes EDS certainly does seem to exist - Lyme has long been called "the great imitator" - because it can mimic the symptoms of almost any disease out there.

we also know that the lyme organism causes the breakdown of connective tissues through direct action and via the action of the inflammation it causes in the body, and also by auto-immune mechanisms.

so, it seems likely to me that conventionally trained doctors just see what they think are the hallmark symptoms of EDS - and not been aware of the wide variety of Lyme pathologies - and having no other explanation that is obvious to them - just diagnose it as what it looks like to them - ie EDS

Post Edited (Garzie) : 1/11/2023 12:06:36 PM (GMT-8)

Posted 1/8/2023 5:45 PM (GMT 0)

saraeli said...
EDS is a genetic disorder, diagnosed exclusively with genetic testing.

Are you positing that Lyme influences a person's epigenetics to give them the condition? The symptoms do overlap a lot, and I certainly have had EDS brought up to me by doctors who don't believe that Lyme can be chronic, and I stubbornly have not been tested by a geneticist. I know that eipgenetics is a relatively new field of study, so I'm sure we're primed to learn soon about how many genetic conditions can be caused or influenced by infections and toxins and even trauma. But once a person had EDS - whether it happens by epigenetics or not - they have a genetic condition, and treating Lyme will not make their symptoms go away.

At least, this is my understanding. Many conditions mimic Lyme in their symptoms, and the medical community is in its infancy in terms of understanding which diseases are related and now and how to treat them (as anyone with chronic Lyme can attest, right?). And of course Lyme plus EDS would be worse than either one alone!

A good friend and her child have EDS, and to hear her and I talk about our health, you'd think we had the same diagnoses. :-/


It is not diagnosed exclusively by genetic testing I'm pretty sure. I was diagnosed and so were my kids , none of us had genetic testing done. We were diagnosed based on symptoms of having it ex. easily bending joints, hypermobility, stretchy skin (stretched way further than most ppl can stretch theirs lol), rotators cuff easily, bending toes and fingers certain ways, twisting ankle easily to where it bends all the way to the side when running or walking and just snaps right back up, this is painful an can also be unvoluntary. You can do splits or bend down touch your toes, even put your foot behind your shoulder. I've had it since I was a child, but as a few years past, I became extremely stiff because of lyme and bart. Was no longer able to stretch barely, arthritis in hips with limited range of motion, can't really Crack knuckles anymore etc. A rheumatologist diagnosed me just by looking at me and making me bend my joints a little, it can be a clinical diagnosis. Idk if there's a genetic test because I never had one, but I was told it's hereditary and genetic. My mom and dad didn't have it as far as we know but my.sister and I did. Lyme is definitely on my agenda as far as there being a link to lyme.
Posted 1/11/2023 6:24 PM (GMT 0)
See my older post - re: my son with hypermobility

It could be something causing it and not be EDS
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