Wild medical history leading to ES diagnosis + Lyme disease+ EDS

Hello everyone, I would like to share my story to gather more information about possible similarities with other people and maybe acquire some more knowledge through sharing my history.

  1. About 4 years ago now I started to experience uncomfortable left SHOULDER cracking, which coincided with pain. This caused me to see a sports medicine doctor who decided to do a tiny shoulder labrum repair which obviously didn’t do anything except hurt my parent’s bank account ;p. A little after that my right shoulder began to crack as well.

  2. Around the same time that summer I went to a summer camp where I didn’t talk for two weeks because my THROAT hurt so bad I thought I had strep or mono, but after seeing an ENT that was not the case, and they had no idea. From then on to now my throat pain comes and goes and sometimes it feels as if my throat is stuck

  3. Also around this time my ADHD and crippling ANXIETY got much worse, which was hard because for my senior year of high school i was at a prestigious boarding school called Interlerchen, for performing arts.

  4. During my senior year of high school both my SHOULDERS continued to crack extremely bad where it was very uncomfortable and painful, I also began to have trouble BREATHING.

  5. Through the summer before I went to college I got into a huge depression for no specific reason other than my ANXIETY and BREATHING was really bad.

  6. I end up going to FSU for a bfa in acting and during this time i out of no where was experiencing horrible symptoms such as; BREATHING problems, ANXIETY, THROAT PAIN, NECK cracking, TMJ, SHOULDER cracking, EYE pain, face TWITCHING, and KNEE problems. Essentially all my joints cracked very bad. (I realize knee arthritic type problems could not possible come from ES though lol)

  7. During that time in college to now, I went to over 30 doctors until finally sophomore year I received a LYME disease diagnosis as well as BARTONELLA, and BABESIOSIS. I thought that antibiotics would help but as of today I’ve been on heavy antibiotics for a year and a half now with no improvement.

  8. My NECK cracking and TMJ cracking as well as horrible pain didn’t get any better with treatment so recently i decided to once again go to more doctors.

  9. This leads me to me seeing a doctor named DR HAUSER( any thoughts on people that have maybe seen him?) at caring medical, which is where i received the ES diagnosis. My internal jugular veins on each side are completely compressed. So now I am going to see a doctor in the next month named DR. HEPWORTH (any thoughts?) to consult for possible surgery. Also with Dr HAUSER I did only one set of prolotherapy which actually helped the cracking I experience a lot but he decided to not do any more until I see an ES doctor.

I did not mention throughout all this time my brain fog, memory, and emotions are extremely messed up. I feel like a 90-year-old with dementia when I’m actually only 21. Also, it’s important to note the biggest issues I have are my joint pain and the CRACKING. I can make literally every joint in my body crack especially my TMJ, NECK, and SHOULDERS. I hope that if I get the ES surgery it will help with the cracking, brain fog, and pain. However, I am skeptical because I also have Lyme disease so am not sure if I will even feel better. But it’s so crazy that I can literally feel the pain of my styloid on the left side like I know exactly where it is by touching my neck because I can feel it. Also, what’s crazy is I can make the two “balls” on either side of your head basically the end of my spine crack, which actually may be the top of the styloids I’m not sure. Anyways I am curious if you guys have experienced similar things and if you have any insight on the issues I am going through medically. I think with this ES diagnosis all the 30+ doctors I’ve been to this may actually finally be a step towards relief as my lyme treatment has done nothing.

Sorry one more thing haha, throughout these years I was also diagnosed with EDS and a doctor from the mayo clinic decided to help stabilize my shoulder by tying my scapula to my ribs, which has helped my right shoulder cracking but hasn’t really done anything with the pain. I do think maybe the LYME/EDS is contributing to the cracking but i hope that ES is the biggest reason.

THANK YOU!!!

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Hi @hyperichard,

Welcome to this nice forum. Thank you for your detailed story. I’m very sorry to read about all your issues. I have had a similar story with doctors odyssey and almost all your symptoms aswell. Only the other diseases besides ES weren’t diagnosed at myself. So sorry that you have these on top of all.
For me it started with shoulder crackling, stiffness and pain too. And then the other symptoms started and aggravated. I had only one side severe jugular compression and the other side about half way. So I hope it is still bearable in your case.

ES makes my muscles very stiff especially im the head neck and shoulder area. When this condition is long term calcium salts are stored in these overused muscles. I’m thinking thats what makes the crackling. I have that aswell everywhere in neck and shoulder. Now after surgery it seems very slowly dissolving.

For me it is plausible that all your symptoms might refer to ES but that’s definitely hard to determine.

Furthermore I’m a bit concerned about you taking antibiotics that long term. That doesn’t sound very healthy. I wouldn’t do that that long, especially when it makes no difference at all. I don’t know your exact condition, but maybe you should talk with a doctor about this too.

I’m happy that you found this forum and also found someone who was able to diagnose ES. Dr Hepworth seems to be a very good address too according to the information on this forum.
I’m guessing some others here can give you more information and will do so quickly.
Until then I can recommend the newbie section if you haven’t already seen that.

Wishing you all the best.

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hyperichard -

Welcome! Your symptoms sound awful & the fact you have both Lyme Disease & EDS doesn’t bode well for your joints. EDS causes ligament laxity which means your joints aren’t held in place as tightly as for someone who doesn’t have it. It’s good that you aren’t striving to be an Olympic athlete as EDS might put a quick end to that.

I have a good friend & a niece who both are dealing with Lyme Disease. My friend’s is in complete remission & my niece goes on & off antibiotics about every 6 months. I will talk to my friend to see what helped her with her Lyme Disease & perhaps can give you some good information going forward.

The symptoms you listed have all been noted w/ ES except perhaps the overall joint cracking. If there are cracking joints, it’s usually jaw, neck shoulder & sometimes there’s cracking/crunching sounds when swallowing if the stylohyoid ligaments are very calcified. As you noted, the lower extremity issues are more likely due to your EDS or Lyme diagnoses. I know Babesiosis is tick born, but Bartonella may come from another source. In case you didn’t know, it’s also called “Cat Scratch Fever” because it can be transmitted through a scratch from a cat.

Dr. Hepworth is the best doctor you can be seeing for ES if you have vascular symptoms. We have a number of members who have benefitted from his care.

Your poor body is fighting many challenges right now. I hope getting the ES taken care of will allow you to fight more effectively against the other problems so you can feel better.

Here are a couple of posts that Jules wrote that will be helpful for you:

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Hey there, I see Dr Hepworth, he diagnosed my Eagle syndrome and he and a vascular surgeon are doing my surgery in two weeks. IMO he’s the best of the best! Absolutely gifted and extremely caring, he won’t dismiss you no matter what your problem is. Hope you can get some answers and treatment from him! He may send you for a ultrasound of your neck blood vessels if you haven’t already done that and he may want you to do a cerebral angiogram/venogram. I did both. He prescribed me a blood thinner and I felt loads better! Now just waiting for surgery.

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Just to add that the brain fog can be caused by vascular ES; if your jugular veins are compressed it increases the pressure inside your head (Intracranial Hypertension), it can also cause dizziness, spacey/ drunk feelings, pressure in your head & ears & other weird symptoms. As blossom mentioned, Dr Hepworth is very experienced so great you have a referral to him. I was never prescribed a blood thinner like blossom, sleeping half upright helped a bit so suggest that you try that if you haven’t already. Surgery made a huge difference to the vascular symptoms, so hopefully Dr Hepworth will be able to help you. (I’m UK & was lucky enough to see a very experienced surgeon here)
The Newbies Guide section has more detailed info about symptoms, but if the Vagus nerve is irritated by the styloids, that can affect anxiety, heart rate, digestion & breathing for example, so that could be an issue for you.
@Snapple2020 also has EDS, & has given members good info about that, so hopefully she may be able to give you some advice.

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The only thing I would like to add is that often several diagnosis need several treatments. I have ES and had surgery but it caused permanent damage to my trigeminal nerve which give me atypical facial pain which I can now control with medication. I also have TMJ and am treated for this as well….tight muscles are also an issue so I have regular therapy……good luck with your treatment

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When you went to get the surgery was the risk of your nerves made clear that this was a risk? I haven’t met with the doctor yet to discuss the risks of surgery.

YES! Doctors always talk about the potential risk to the nerves during surgery. That is the biggest concern with ES surgery because 6 of your 12 cranial nerves exist in the area where you styloids grow. Some of them usually need to be moved out of the way for a styloidectomy to be performed, & this irritates/mildly damages them so they can cause uncomfy symptoms for some months after surgery as they recover. These nerves are monitored electronically during surgery to help prevent any permanent damage but sometimes that happens anyway as nerves can wrap around the styloid or be tangled together, etc., so the simple act of moving them causes the damage. In most cases, they recover completely (can take up to a year or more) but in some cases they don’t so nerve pain medication is necessary to help keep the pain/symptoms at bay.

You can do some educational research for yourself - Google the vagus, trigeminal, glossopharyngeal, facial, hypoglossal & accessory nerves. These are the cranial nerves most often irritated by elongated styloids. YouTube has a series called Two Minute Neuroscience w/ a a short 2 min. video about each nerve. Try to take some time to watch those. You’ll learn a lot.

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Thanks, I will 100% do more research on the specific nerves. But also, I do admit that does scare me a little bit to learn about the possibility of permanent or temporary damage to my nerves because I have anxiety and that is something to be anxious about! But, I would trade all my horrible symptoms right now in return for some possible facial pain. It’s been 4 years of 24/7 horrible pain without breaks so I think at this point I don’t have much to lose. However, just to entertain the horrible skeptical side of me are there any potential complications that would not be worth the surgery if you knew you would get those complications? Also, I am sure the doctor will go ever this with me when the time comes. At the moment I am traveling to Colorado from Florida to see the Nurse Practioner to Dr Hepworth on October 22nd and then after that meeting, I will get to see the doctor via tella health, and then hopefully get the surgery. So, I still have quite a bit of waiting and research to do before I hopefully receive relief.

Well, extremely small number of people die from covid vaccine, extracted wisdom tooth, or even ingrown nail, but that’s the reality. Statistics. On the other hand, there were a few documented suspected deaths caused by elongated styloids.

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I have Lyme and ES and possible EDS I just found out about the Lyme have 6 COinfections in October 2020 from a tick bite 10 years ago was put in hospital for 3 days with 8 inch bulls eye rash given strong antibiotics for 3 days sent home without being told I had Lyme,

I tried antibiotics which helped when on them. All the herbs that gave me bad reactions.

W.hat helped the most was infrared sauna, ozone therapy, rifing, lots of magnesium oil spray on, I have recipe for the magnesium oil if you would like it, epsom salt bath and just bought a float tank for my massage office the magnesium and float tanks help with anxiety and stress lots of studies are being done on this even military are using for PTSD, and stopped eating mammalian meat Tick bites can give You an allergy to mammalian called alpha gal even though I tested negative on the allergy test which is not accurate anyway I stopped eating mammalian and wallah my vomiting of 7 years stopped.

If you like I can tell you where to get these modalities, at a more affordable price than spending at a llmd. cost me $1200 my first visit to llmd and he didn’t figure out about the alpha gal, he gave me IV ozone with heparin which is a beef product landed me in er with low platelets …sigh. And you can do frequently at home or anywhere with rifing. Luckily I live in Colorado and I see Dr Hepworth for my ES on Oct 15 I am looking forward to that.

Hope this helps this group is a godsend with a wealth of knowledge as you can see (more than doctors no pun intended) you can depend on your info here. Hugs.

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When doing my usual deep dive research on EDS and POTS, I came across a website that linked Lyme with POTS. There is suspicion that POTS is triggered by a virus in some patients.

This doctor is out of Seattle and specializes in environmental illnesses and lyme. She has some interesting genetic testing called “Methylgenetic nutrition analysis” that I think may be of value.

I’m curious if anyone has done this testing and what their thoughts are.

An infrared sauna is on my bucket list. They have been coming down in price and I have seen them as low as about $1600 @ cotcsco.

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For everyone asking about a infrared sauna, I actually have one and it works amazing! Really actually does make me feel better, + it was only 1000$!!! It’s on sale it’s been on sale for a while now I am not sure when they will end the sale, but here’s the link!

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As with any surgery, there are risks, but these are lowered with a good surgeon. There is the very small risk of a bleed or a stroke with the surgery, but as vdm says, there can be that very rare risk with the styloids in…
We have had some members who have had some facial paralysis, but this generally improves with time after surgery. Also there have been some members who’ve had shoulder weakness after surgery, but again, this does improve. Numbness does seem to be quite common after surgery- I have some around my ear, but it’s way better than pain. For anyone considering surgery, it’s about the balance between how badly the symptoms are affecting your quality of life compared to any risks- most of us get to the point where the benefits definitely outweigh the risks! I appreciate with your anxiety this might not be very reassuring, but the only cure for ES is surgery, and leaving them in can worsen symptoms…

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Yes, I totally agree. I think I will have to accept the fact that whatever happens once surgery happens, that it was worth the risk to be happy. Like all good things in life a certain amount of risk usually follows. For example; you can look at many ultra successful people who came from nothing and failed for many many years but because they took that risk it allowed for the success to be massive. I also believe from what I have heard and read that Dr Hepworth will do everything in his power to help me and that the quality of life of his patients matter to him.

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That is a decent price! I believe the one at Cotsco is a 2 person one which is along the same lines as this companies price. I have a little spot in my garage I could fit this 1 person one. My neurologist swears by the health benefits of these and uses one daily. That float tank looks incredible for stress relief and meditation and I would love to add that one to the garage as well! Unfortunately beyond my budget. Thanks so much for the link.

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Personally I had more numbness in my neck from my surgery in April 2020 and Dec 2020 and still do although much less. A little first bite after one as well as TMJ flair which I was warned might occur.
Most who have chosen to have surgery usually have reached a point of desperation to get relief from the pain. This is after spending years trying just about anything to get relief (unsuccessfully). You can feel confident that you are in the hands of an experienced ES surgeon and has many happy patients and outcomes.

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I’m with you on the Lyme/EDS/Eagle trifecta plus! Fun stuff!

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I am sorry for all of you who have multiple serious health challenges going on. I know what works for one person may not be the solution for another, but it’s great that you are all sharing therapies & modalities that have helped you. I’m learning so much about therapies I’ve never heard of from this thread.

Hoping & praying you will each find what works best for you in order that you may live your lives fully. It will be a process but perseverance pays off.

:hugs:

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I got mine on Alibaba less than $1600 including shipping from China it had healing stones in it jade and tourmaline and you lay down in it a dime shape if you want link to pics let me know

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