posted
I went to a rheumatologist a week ago and had a check up. I have been treated for Lyme disease for five years on various antibiotics and none of them have helped. Treated for coinfections. I wanted to see if there is anything else j could have besides Lyme.
The rheumatologist said I have hyper mobility syndrome. It means my joints are really flexible and so they cause pain. I think it is similar to ehlers danlos.
It makes sense because my hands are really flexible and my knees are too. I think it is also associated with chronic fatigue syndrome.
I read about it online though and there doesn't seem to be a cure for it and the only treatment is aleve and NSAIDs so even if I do have it I guess it's no better than a diagnosis of Lyme. So just wanted to see if anyone had any suggestions.
I had a western blot five years ago where I think 23 showed up in igm and 30 and 41 showed up IGG.
I just don't know if Lyme is causing these problems for me because I had no response to antibiotics
..........................................
(breaking this up for easier reading for many here)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Katrina,
Sorry to hear of your frustration. As for having treated for five years and seeing no improvement, my first question is whether the treatment was adequate with a full sense of the combinations required and the rotations as well.
As you posted 25 November,2014:
" seeking llmd in mass. apparently mine isnt since he knows nothing about cyst busters "
Did you find a proper LLMD then, in 2015 ? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not read too much into "hypermobility" as I was also dx with that and, yes, regarding some basic movement strategies, there are some things you can do to minimize some of the physical stress.
You say, or have been told "the only treatment is aleve and NSAIDs "
Not true. Not at all true. There are many other safe methods. NSAIDs are not safe.
Lyme can attack collagen and that can cause hypermobile joints, too.
But there is far more to what's going on with your body besides that. Might it have some connection to your pain? Sure. Physcial therapy and education in how to best guard against over extending joints is important. Not over stretching, etc. How you sit, stand, etc.
Some massage might also be excellent. As long as I pay attention to the basics of how to mind my form, that really helps. But, with lyme & all, it's not enough.
I am concerned that if, up until last year, you did not have a properly educated doctor or were able to compres
must stop now. later on this thought.
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- some stray thoughts: Do consider LymeToo's post and all other influences as well. It sounds like the rheumatologist dropped the ball big time not just on other influences / connections but also on what all can help.
Are you gluten-free? That might be of good help regarding comfort level.
Google: best shoes for hypermobility, knees
Birkenstocks, Earth shoes, or any shoe that has the heel lower really bothers my knees because (as I found out after the fact) they can cause the knees to be pushed too far against themselves (for someone with hypermobility).
It's vital to have the best support on your feet at all time and that usually means good arch support.
Never stand with knees "straight" - be sure they are flexed a little bit. A good PT can teach you more about this.
Two-minute video - while these poses may not be your cup of tea, she has hypermobile joints and it's good to take a look at how she's learned to work around that. A much longer educational session would be best, of course, but it's nice to have just a little visual with this one.
It's not how far you can go, as she says, but the inner core strength and stability. PILATES might have some specifics for you, too. -
[ 04-27-2016, 04:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Actually this might be where you could look at Dr S's work. He talks about people with genetic issues handling the aftermath of antibiotic therapy. His whole idea is that these people actually are responding to the antibiotics but they don't feel better because their inflammation never gets better -- he calls that "biotoxin illness."
He gives people certain therapies to bring down inflammation markers like tgf beta 1 and a couple others.
I'm not sure how much I believe in this, but hey, anything that helps--
posted
Lyme bands 23 and 30 are specific for Lyme. Lyme eats up tissues, all of them. It can cause this.
Rheumatologists generally do not name Lyme. They're part of the medical stand-down. I even later went back to one I had seen early on for my unknown condition and he refused to accept my now-Lyme diagnosis.
I started taking Biosil recently and I like it. It makes me feel good and it's supposed to be good for joints - has silica in it.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Ya rhuemy gave me that too...it eats collagen..i hsvr been flexible all my life. maybe try rife, bvt,or other modalities..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
posted
The 23andme should show the genetic marker for EDS. My point with the link above is that you may also have MCAS along with the EDS. At least some of your symptoms could be helped if you also have that.
It may not help your joint issues, but could help other symptoms you may be having.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Katrina,
only tiny parts of a few matters now can I expand upon: NSAIDS. They pose serious risks and most often cause so much pain in the gut and can cause bleeding ulcers, etc.. There are better options for pain management but they likely don't come from a pharmacy.
Whatever all is going on with causes / influences, there are some ways to nourish the body to help, too. The silica / Biosil that Robin mentions is one example.
I hope your 23 & me tests come back soon and shine some good, definitive light regarding either the collagen issues &/or the possibility of MAST CELL matters.
Still, whatever, you have this comprehensive situation and I am sure that there are safe ways that can help (as NSAIDS are not safe) - as the fuller picture comes to light.
Your determination to explore whatever (all) is going on is to be applauded. And with each piece of the puzzle brings more questions but also more options for how to address / ease / support. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I read recently that Lyme triggers mast cell activation - where's the link for that, anyone?
Katrina, my fibromyalgia was Lyme disease, same for lots of people. I'd say with your positive 23 and 30 band, you don't need to wonder - you are dealing with Lyme as part of the mix.
Not to say all, as you mention. You're certainly free to do as much testing as you can to learn about anything else going on.
What I did re opiates, when I didn't know I had Lyme - I rotated 4 of them, so as not to develop tolerance. So, a different one each evening in order to sleep - I took them for that reason only and sucked it up during the day.
If I started to get too high on one, I dropped it out and brought it back in a couple months later. It was all managed.
Now I take capsules of turmeric to take down muscle and joint pain - it works pretty well for me. Have you tried taking turmeric for pain?
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Have you done iv?..Seems like bvt ,mhbot
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
posted
What causes mast cell activation? Will the 23 and me test
show anything about mast cell activation? I don't have any
skin issues as far as rashes, Could I still have MCA? I had an allergy test that showed
I was allergic to dairy almonds and wheat which I am avoiding
now. I'm not going to take NSAIDs. They wouldn't even touch
the pain I have. My doctor will prescribe opiates if I am in too
much pain. I was annoyed after leaving the rheumatologist.
She said physical therapy and pain medication might help and
referred me to a fibromyalgia clinic. I know physical therapy
Wouldn't do anything except exhaust me and cause more pain
For me. And if opiates don't get rid of my pain completely and
I've tried almost every pain medication before my doctor
Offered to prescribe opiates, what makes her thinks that any
Other medication would help? She said opiates would not be
Appropriate for my type of pain and said she was disappointed
That my primary care doctor prescribed them. I said well she
Tried every medication she could first and I was even sent to
A pain clinic and they didn't know what to do with me!
I think only the patient can decide what pain medication is
Appropriate because they are the one who is feeling the pain!
I hope that the 23 and me test will shed some light because
The hypermobility syndrome seems like anther useless
Diagnosis like fibromyalgia or chronic fatigue syndrome.
A diagnosis where the treatment is pretty much useless!
Posts: 723 | From boston,ma | Registered: Jan 2011
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you are concerned about the possibility of having Ehlers Danlos Syndrome, I would highly recommend that you see a geneticist.
They will be able to properly evaluate you, test you (including genetic blood tests), and prescribe or refer you to various other practitioners for symptom control/ treatment.
Ehlers Danlos Syndrome is much misunderstood. I have it myself. It is much much more than just "hyper mobile joints". It impacts Every part, Every system of the body...
I don't know all your symptoms besides the obvious pain. I'm sure there are more.
If you do have hyper mobility OR Ehlers Danlos Syndrome you need you work with practitioners that are experienced in treating your condition. This is so important because uneducated/ inexperienced practitioners (like PT) will cause you more pain instead of helping.
I hope you find your answers and get good help soon.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I don't know anything about Ehlers Danlos, sorry, but the symptoms you're listing here sound like Lyme disease to me.
For the general pain, I do turmeric capsules - I get turmeric in bulk at the health food store and I dip 00-size empty capsules into it, take a couple a day. It knocks down muscle and joint pain for me.
For eye symptoms, I drink mangosteen juice - it can stop all my eye symptoms. It's an anti-inflammatory juice. There's lots of varieties in health food stores and online - I like the Mango-Xan one as it's the most tart. I drink around an ounce a day.
For brain fog, sometimes it's from low thyroid. You could get your T3 and TSH levels tested for. My T3 was low and I went on Armour thyroid and suddenly I felt present in the world again. So for me it was a matter of boosting my metabolism.
We're all different so each of us needs to find out what we respond to.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey katrina! Good to see you.
I looked up ehlers danlos to get a basic description to see if I could add anything helpful to the post. I almost threw up. Really.
First, rheumatologists are famous for taking a list of symptoms, putting their name to that list, and touting their findings far and wide. "Oh look what I did".
Their newly described "condition" is then etched in medical history. It brings them attention, gets them a good seat at the table and feeds their egos. They often get grants to study their newly made up disease, or even prizes, but they all have one thing in common.... none of these diseases has a known cause, or a known cure. Money money money honey.
Anything a rheumatologist says you must take with a 10 pound block of salt and do your own research if you want true answers.
Spirochetes destroy the collagen. In chronic Lyme it is what is referred to as Acrodermatitis Chronica Atrophicans (ACA). ACA is said to be in European patients, but it is thriving here in the USA, it is just being misdiagnosed- even by the majority of LLMD's.
The symptoms of this EDS and Lyme ACA are nearly identical.
We know millions of people are misdiagnosed that actually have Lyme. We just don't know where all of them have gone in search for help.
EDS, in my opinion, is ONE of many places they could have been sent and where they remain today getting worse and suffering.
Some patients have gone into the new "connective tissue disease" category. Some moved on to scleroderma. Other are lost to "rare" syndromes and some auto-immune garbage.
I know nothing about EDS except for what I read tonight. I DO know nearly everything there is to know about Lyme ACA.
I suggest you take a look at some of that literature if you want answers. Penicillin seems to be a treatment that works better in some who have Lyme ACA.
According to the literature, and much of it is older literature before the IDSA/CDC got their patents and vaccines...
Lyme ACA is the ONLY proof that a person has true "CHRONIC Lyme", in other words, live spirochetes after treatment.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, Bb eats collagen, that's for sure, causing all of the connective tissue and joint damage. An LLMD I had, who is a neurologist, said that Ehlers Danlos can be acquired, due to TBD's (not the common belief, of course).
Besides TBD treatment to prevent further damage, Prolotherapy can repair the existing damage. Go to GetProlo for lots of info and for referrals to doctors who do it. There is a ton of info there.
I've had tons of it done, and it's saved my life in terms of all the joint instability and pain that I had, due to the terrible damage and hyper-mobility.
Oh, and Rheumy's----they are major TBD deniers, with the exception of one in NJ who is LL. I had seen one before I finally was dx'd. She dx'd me with many auto-immune diseases. When I went back to her after dx (before I completely understood the great divide), she said, "Oh, no, you never had Lyme!"
I thought: What alternate universe do you live in??!! End of story with her.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
So I found out today that there is no genetic test for the hypermobile Ehlers Danlos. And 23 and me does not test for anything like collagen disorders, because a collagen disorder gives further evidence to someone having it.
So I have no way of knowing if what I have is ehlers danlos or if it's Lyme causing this. I've always been very flexible and was born with my hips out of their sockets. I think I mentioned this.
There is really no treatment for ehlers danlos. Some people take supplements like coq10 and get treatments like Prolotherapy to stabilize joints. I have joint pain but I also have muscle pain and fatigue. I didn't understand how this could be involved with ehlers danlos but the rheumatologist assured me that ehlers danlos and fibromyalgia and CFS go hand in hand.
So I'm unsure of how to proceed at this point. I don't know if I should try to continue treating Lyme even though I've had zero response to antibiotics in four years or if i should forget about Lyme and go down a different path in trying to treat ehlers danlos.
If I really do have ehlers danlos it is a disappointment because I doubt that I will find any way to get rid of this pain and fatigue. It is so debilitating. The pain keeps me up at night and I can't work. I'm on heavy opiates a lot of the time and that doesn't even get rid of the pain.
Each day of my life has recently consisted of trying to get through the day without falling asleep and trying not to over exert myself. I just don't see how this is any kind of a life at all. I didn't know that ehlers danlos could cause such severe disabling symptoms. I actually knew someone that had it and they were pretty functional. Not on Disabilty and able to work, had a social life.
Any advice is appreciated.
Posts: 723 | From boston,ma | Registered: Jan 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I don't know the answer about what you should do, but I will say that I heartily recommend getting good prolotherapy. That will fix the instability/hyper-mobility problem which causes so much pain.
It would help if you can decrease the opiates, as you do this, so that your immune system can help with the healing process initiated by the prolotherapy.
The fatigue, etc. is a different story with a different cause. It may not fully explain the fatigue, but on-going severe pain is completely exhausting. And opiates lead to fatigue, also
But the fact that you were born with your hips out of the sockets surely points towards Ehlers-Dalos----and/or TBD's acquired in utero.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Rumigirl, does Prolotherapy work? Have you tried it? Is it something that you have to have done many times?
Posts: 723 | From boston,ma | Registered: Jan 2011
| IP: Logged |
posted
If you've treated lyme (and coinfections, as you say) for FOUR YEARS with no improvement, it may be time to look to other things.
Even one of the country's top LLMD says in his own book that sometimes lyme and coinfections are not the only things that need to be treated, and that some patients never improve until other, sometimes completely unrelated things, are treated/corrected.
I think wholistic medicine/functional medicine doctors will look at possible causes.
Some of the things you complain about should get looked at by a competent physician, and could be any of hundreds of things.
Posts: 200 | From Ohio | Registered: Apr 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic