posted
I have recently been wondering about any connection between Hypermobility Syndrome and Lyme and Co.
A few months ago the rheumy told me I had Hypermobility Syndrome and that was causing all my problems not Lyme/babesia/bartonella whatever else may be lurking.
I have no doubt I have Hypermobility Syndrome, but I didn't need a doctor to tell me that. I have always been extremely flexible, I was even a competitive gymnast. But I do not think all my symptoms are due to that.
But my question is, could the fact that I have Hypermobilty Syndrome contribute to why some of my pain is so intense in my muscles?
My back and my whole thoracic cavity are the worst. All the connective tissue in my ribs is constantly tender and loose. My ribs are constantly popping in and out of place. And the muscles in my back are constantly in excruciatingly painful, back stabbing knots. Most likely to compensate for the ribs and loose connective tissue. However the muscle tightness moves the ribs too, so it just makes it even worse. Then the knots move to my shoulders and neck. It tightens around my rib cage, making it feel like I'm being squeezed by a giant every time I take a deep breath.
I'm wondering if the fact the I already have genetically abnormal connective tissue is why this particular set of symptoms is so bad for me.
I know Lyme and co can be quite opportunistic. Has anyone else experienced this? Has anyway else been diagnosed with Hypermobility Syndrome? Or no anything about the connection between these two things?
I'm very curious.
On a bright note....less then one month till my LLMD appointment....and he's trained by the good guys !
Posts: 54 | From Central, MA | Registered: May 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I have Ehler's Danlos Syndrome. It sounds like you have done research so you probably know that this is a genetic collagen disorder. It's most well known for causing joint hypermobility and dislocation.
Obviously, I'm extremely flexible too. I used it to my advantage and trained in dance and ballet for 15yrs. For dancing, the Ehler's Danlos was both a blessing and a curse. It gave me greater flexibility but I had almost not limit, no protective sense of when to stop pushing myself.
I had the dislocations and minor injuries but for the most part my strong muscles protected me from serious damage.
When I got sick with Lyme and coinfections I experienced a type of pain that I had never felt before. The infections cause severe inflammation and joint destruction.
Because of my illness I have not been able to be as active as I once was. My muscles are not nearly as strong. I've lost that protection. The infections have caused my Ehler's Danlos symptoms to be more severe.
I honestly don't think that there is a connection between Lyme and hypermobility. You have a pre-existing condition of hypermobility. Unfortunately, the Lyme infection may make your symptoms worse as it has made mine worse. That may be what you are experiencing.
I would not discount either diagnosis, the hypermobility or the Lyme. Both cause real symptoms and pain. If you have not seen a specialist, then I would encourage you to seek out a geneticist trained in hypermobility and EDS. Also, if you have Lyme then you need to start treatment with an LLMD as soon as possible.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Dr. Shoemaker ( the mold guy ) says that certain genotypes are more susceptible to biotoxin illness ( mold, Lyme ).
Hyper mobility is a genetic factor for both things, biotoxin illness and the conditions you guys are talking about.
Those are just a couple of the genotypes that are susceptible. There are a whole bunch of other ones too.
I am also very flexible, was a superstar in yoga. Lol. But I don't have the genes that are connected with the hyper mobility. I do have genes that make me susceptible to biotoxin illness though.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Interesting that it can make you more susceptible to biotixin illness. I've read it's the biotixins that can cause a lot of swelling. And swelling has been a really big problem for me. It's like my body just can't flush things out quick enough.
I constantly feel like I have fluid pooling under my skin all over my body. I noticed when I feel my worst, the swelling is really bad. And when I feel goo my body almost feels normal again...not squishy like a water balloon. ( it is really weird this fluid pools on my hips and my upper buttox, when I squeeze my butt muscles you can still feel, touch, see very obvious fluid under the skin, it's litterly like a water bed if you poke it or shake it. It's so weird but I just have to laugh at it cause what else can you do)
I also get fluid in the back of my neck, and I can even feel it squirting around...gross right! I've been told by drs this s impossible....but it's there regardless.
Anyway I'm wondering if that biotixin susceptibility has to do with all this swelling, maybe my system is just more sensitive to it r less capable of handling it.
Is there anything I can do to help my bdy process out these toxins? I'm thinking of starting a herbal parasite cleanse, followed by a kidney and liver cleanse, not sure if I have them but I figure it's likely. Kinda grossed out by the idea of a parasite cleanse....not sure if I really want to see what might have taken up residence in my body.
Posts: 54 | From Central, MA | Registered: May 2012
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posted
I don't know anything about that kind of swelling, my hands and feet swelled but that was it. I'm sure a parasite cleanse would be helpful.
I have been using Cholestrymine ( CSM ) to take out the toxins. If you do this one you need to start slow. It can cause a massive inflammation response. I also took it with high dose fish oil in the beginning. It's a perscption.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Is that the stuff that is made from milk? A holistic doctored put me on something similar for low IGG levels, but I had to stop. I have a milk allergy and it caused a lot of gastric symptoms to return.
What else helps the body to remove toxins?
Posts: 54 | From Central, MA | Registered: May 2012
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posted
I read that Dr B says those who get sickest are typically the ones that don't test positive for Lyme.
Could this have to do with the possibility that those who get sickest, also might be people with genetic immune deficiencies (such as those that cause joint Hypermobility) ? If ur immune system is already sluggish, and you acquire something that suppresses it, wouldn't it stand to reason you simply don't make the antibodies to show for Lyme?
Also perhaps those that get sickest is a combination of the fact they already have an off kilter immune system and tests for Lyme though perhaps suspected early, come back negative time and time again.
Perhaps treatment protocol for such people needs to take this into account....maybe having an even stronger emphasis on supporting the immune system.
Also if the antibiotics can cause autoimmune responses to kick up into high gear, such as in multiple food allergies....what you'll be a good protocol? If Lyme and friends thrive in inflamed environments yet the bodies own immune system is causing the inflamed environment, yet you need the immune system to fight the infections.....what then? How do you teach the immune system what to fight without attacking itself?
Posts: 54 | From Central, MA | Registered: May 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tucker-Bell, are you my long lost sister?...Kidding
My geneticist says that Hypermobility syndromes and Ehler's Danlos Syndromes are not connected to any Primary (genetic) Immune Deficiencies.
I just happen to have 2 weird genetic disorders. I have the EDS and I have a severe immune deficiency, CVID. My body does not make enough IgG, IgA, and it cannot form immunity to vaccines. That's the basic, there is more wrong but I don't want to get too specific.
Anyways, this causes problems for testing as you can imagine. If I am seriously deficient in IgG and you want to see if I have an infection by testing IgG and IgM (like Lyme western blot), my tests are not going to be accurate. Luckily, my Lyme western blot's still came back positive. I have positives on other tests too.
Some tests my doctors have not declared me positive. They have held them and continue to repeat them every 3 or 6mo. The antibodies are showing low positive but not strong enough to be in the positive range of the lab. They don't want to treat until they have a "lab positive". So you will run into this too.
Once you get on antibiotics they act as anti-inflammatories. That helps the with some of the auto-immune stuff. I honestly am not so worried about that since I have the immune deficiency.
Your LLMD will recommend supplements that will help support the immune system too.
Posts: 5237 | From here | Registered: Nov 2007
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