I've been recently diagnosed with Lyme but my medical history is more complicated than that. I've been sick for the past seven years or so. I am young, in my 20s, and I am forced to live at home with my family because I am unable to work a full time job with this condition.
The problem is that I don't think that many of my symptoms are Lyme disease at all. I have also been diagnosed with venous compression Thoracic Outlet Syndrome and Eagle Syndrome, which is a similar compression syndrome caused by the Styloid process.
I was diagnosed about five months ago and I've been on a pretty serious course of treatment since then. I am taking probably fifty separate supplements each day, my diet is excellent, I exercise as much as I can and I am doing everything my doctors are asking of me. And, yes, I am seeing doctors who are Lyme literate.
The problem is that I am feeling no change. Nothing at all. Not a herx reaction, not anything. This seems highly unusual to me. I know that Lyme is a difficult condition to treat, but it seems to me that most of my symptoms are related to TOS and Eagles and not Lyme or a co-infection.
For the last four or five years I have been treated off and on for Thoracic Outlet Syndrome, specifically venous compression TOS. My symptoms are primarily vascular, swelling in my arms and neck, difficulty raising my arms over my head and things like that.
Also I have pain around my hyoid bone when turning my neck even just a little bit. This is consistent with Eagle Syndrome and recent CAT scans indicate that I have a calcified stylohyoid ligament there.
I had extensive testing with Dr Collins, who is a specialist radiologist at UCLA prior to being diagnosed with Lyme and he found conclusively that there is compression of the nerves and veins leading to my arms.
In fact, these doctors had recommended TOS decompression surgery followed by physical therapy after I had failed to respond to conservative treatment options.
Being a young guy, I need to rely on my family to help with medical bills. And I need a ride to the doctor because my symptoms make driving quite difficult. But my parents believe that ALL my symptoms are related to Lyme disease and not any of these other diagnosed conditions. They don't want me to have surgery for TOS and they don't really listen to me when I explain what I believe is causing my pain.
Is it normal to be treating Lyme disease for four to five months, following a program set forward by Lyme literate doctors, and literally feel NO improvement whatsoever?
In your experience, does Lyme cause vascular symptoms like the ones I am experiencing in my arms, neck and shoulders?
Thanks.
Posted by Judie (Member # 38323) on :
Lyme does cause all kinds of blood/nerve disorders and swelling. It can be VERY painful.
Have you been evaluated for hypercoagulation? Here's an article:
Lyme is known as the great imitator for a reason. Whatever a person is predisposed to seems to go crazy with Lyme and misdiagnosis is VERY common for other illnesses.
I have a friend who has been diagnosed with multiple sclerosis for the past 6 years. She's in a wheelchair and declining fast (the doctors basically said to prepare for the end).
I urged her to get tested for Lyme and she just a a CDC positive Lyme test.
You might find this video interesting:
Ticked on Chronicle (a news report that highlights the issues and getting the correct diagnosis, many people are diagnosed with other things first)
I have two other friends diagnosed with other things and it turned out it was Lyme.
I was not familiar with Eagle Syndrome, but it looks like it's caused by teeth grinding if I got it right?
A lot of us have TMJ problems. Lyme effects everything.
Personally, I was originally taking a ton of supplements along with meds for several months and not progressing. My doc had me cut waaaaaaaay down on the supplements and I started to do better. There was only so much my stomach could process at a time.
Here's a thread on other things to test for. Coinfections can be a BIG issue with progress (I have 13).
Can't say anything definite, but a lot of unusual disease labels get stuck on people with lyme. So, it is possible that you do have other things going on in addition to lyme, but it is suspicious when this happens. Often it turns out to be another of the multitude of symptoms brought on by the tickborne diseases.
Blood vessels are definitely a target for lyme bacteria. Endothelial cells in particular.
If you have been sick for years, five months of treatment is not going to cure you. The herxing differs with different people and with the antibiotics used.
Posted by steve1906 (Member # 16206) on :
Hi jrodefeld, sorry you're suffering with these diseases. Such a young age but, as you can see you’re not along, and many Lyme suffers are much younger than yourself, sadly.
You said you have Lyme literate doctors (LLMD). Are they [ILADS] Chronic Lyme disease Doctors?
A lot of doctors call themselves (Lyme literate), including (infectious disease doctors).
If you’re not sure your doc’s are true LLMD’s, you can “PM” me, or anyone here and we can make sure for you.
I agree with your parents, (at this point), about not having surgery, what does your LLMD's say about this?
Please tell us more about your symptoms, & what meds you’re taking?
Lyme and co infections can affect every part of our body’s - from head to toe.
...my parents believe that ALL my symptoms are related to Lyme disease and not any of these other diagnosed conditions. They don't want me to have surgery for TOS and they don't really listen to me when I explain what I believe is causing my pain.
Is it normal to be treating Lyme disease for four to five months, following a program set forward by Lyme literate doctors, and literally feel NO improvement whatsoever?
Thanks.
I have to agree with your parents on all counts, so no surgery either, listen to them and your lyme doc.
Everyone is different when it comes to lyme. Our symptoms have similarities but our responses can be quite different. Everyone has genetic issues which affect treatment as well. Herx, no herx, we're all different.
Five months is nothing when it comes to treating lyme. And you're also not just treating lyme. A co infection may be in your path as well (likely). Once I started treatment another co infection popped up, then another and so on.
Have you been on the same meds for 5 months? Perhaps it's time for a change. Also, is your doc an ILADS doc (can make all the difference)? All docs think they are lyme literate, even ID docs, but they are not.
Posted by lymeinhell (Member # 4622) on :
I'm with your family. Skip any kind of surgery - the risks associated with surgery and Lyme right now are too high.
Before you get too comfy with Thoracic Outlet Syndrome and Eagle Syndrome, I suggest you learn more about Lyme. I say this because I can see myself in MUCH of the symptom lists associated with these 2 labels. What was eye catching for me in both was the statements that 'There is no known cause for the symptoms, but it is assumed infection or trauma'.....
I know when you have unrelenting neck/head/facial pain, you'll happily grab onto any 'cause' or 'cure' thrown your way. Been there, done that. Lived my life for over year in AGONY. Even stupid enough to have a cervical epidural, because the quacks blamed it on a slightly herniated disc I had for over 15 years with no pain.
For me, the pain issues were all muscle spazm related. Cause by extremely low magnesium levels from Lyme. Trigger point injections of lidocaine, and magnesium IV's fixed both the cause and the never ending knots.
Please keep reading, and listen to your parents' wisdom.
Posted by Lymetoo (Member # 743) on :
The inflammation from Lyme can make all of your symptoms worse. Keep treating and up the MAGNESIUM.
Posted by Robin123 (Member # 9197) on :
TOS was one of my many diagnoses prior to the Lyme diagnosis.
Just looked up Eagle syndrome - says the styloid process is elongated in a small percentage of the population. Has any doctor told you they see that in you anatomically?
Am pming you.
Posted by jrodefeld (Member # 44469) on :
Thanks for all the responses.
I am currently seeing Dr G in CA.
I got a referral from someone who is a family friend who says that he saved her life essentially. She had Lyme disease and had been to dozens of doctors and only he helped her. His specialty is treating Lyme and I believe he is supposed to be one of the best.
He gave a more optimistic prognosis. He said that most patients feel 10% better every month and some feel better quicker than that. I'm sure there are some tough cases but, certainly on the scale of Lyme disease, I am not in bad shape compared to many (as far as Lyme symptoms).
I asked him specifically about the venous thoracic outlet syndrome diagnosis, and he was very clear that that condition was not part of Lyme disease. He also suggested I put off any thought of surgery until he is able to get the Lyme condition under control but he said that I may indeed need to have the proposed surgery afterward.
I understand that Lyme mimics many different conditions and that most people who have Lyme have been misdiagnosed with all kinds of medical problems. However, I don't believe the TOS diagnosis was made in haste.
Actually in 2008 I had a surgery to decompress the Thoracic outlet. I had this surgery at UCLA by Dr Gelabert who is considered one of the best surgeons for treating this condition. He did the most noninvasive procedure he could, which is to make a small incision under the armpit and remove part of the first rib that is causing compression.
After surgery I felt tremendously better for a period of time. I still had the "Eagle syndrome" type pain in my head and neck, but my arms felt SO much better, far less swelling in my shoulders and chest area, more range of motion. I could think more clearly and I just felt tremendously better than I did before.
After surgery, Dr Gelabert explained that I had scalene muscles that were four times normal size, and cervical ribs on both sides. There were fibrous bands that extended from the cervical ribs to the first rib that were heavily pressing upon my subclavian vein, artery and nerves.
The improvement, which eliminated at least fifty percent (maybe more) of all my symptoms, lasted maybe a year, maybe a little less.
Subsequently I have had two extensive imaging workups with Dr Collins, who is supposed to be the very best at diagnosing TOS and evaluating the anatomy in the neck, arms and chest. Apparently the first rib that was resected has grown back and is causing extensive compression again. Apparently this is rare, but it does occur with maybe 5% of patients.
This makes it like I never had the procedure in the first place. What has been proposed is a slightly more involved procedure where the first rib is resected, and then the hypertrophied scalene muscles are removed and the cervical ribs.
Followed by physical therapy to restore normal muscle tone and function to the arms, shoulders and neck areas.
This is why I have an attachment to treating this condition. I know how much better I felt when it was partially treated before. Also, venous compression TOS is significantly more dangerous than nerve compression. People can develop blood clots in their arms or a pulmonary embolism.
As for Eagle Syndrome, yes that has been confirmed on CAT scans and x rays. Elongated styloids and significantly calcified stylohyoid ligaments where they attach to the hyoid.
The problem with this is that I FEEL the bone in my throat. I can put my tongue on it. I have had various injection therapies to the stylohyoid ligament, especially Prolotherapy, that have provided absolutely unbelievable improvement in my head and neck pain. Unfortunately it never lasts, but it does give some indication (I think) that those structures are causing problems.
My concern with the Styloids and calcified ligaments are impingement on the carotid artery and/or jugular vein. This has not been confirmed by the scans I've had, but this is almost impossible to conclusively confirm. Unless you have an aneurysm or dissection or something like that, doctors only go by the presence of an elongated or calcified styloid and cardiovascular symptoms in your head.
In any case, that is why I feel so strongly about these diagnoses. They have both been confirmed about as conclusively as any medical condition can be confirmed.
The entire trajectory of my medical problems, from the beginning eight or nine years ago, does not seem similar to other cases I have read about Lyme.
I just think that the more likely explanation is that I developed TOS first, or Eagle Syndrome, and then years of untreated vascular compression caused circulation problems, problems with lymphatic drainage, and then my body was very susceptible to infection. So I developed Lyme and co-infections. I may be wrong about this, but that is the way it seems to me.
The frustration comes from the fact that I was diligently working with doctors who are very competent for a couple of years, I got extensive (two and a half hours) MRI's and scans to confirm the compression and I was just about to actually DO something definitive to treat this condition, and I have to put all that off indefinitely to treat Lyme and ONLY Lyme for months or years while these other potential problems go unaddressed.
The most frustrating thing is being in a dependent position where I can't make medical decisions without outside support. I don't have much money of my own, I didn't even finish college because of this condition. I feel unsafe to drive (long distances) so I need rides to doctors. I just feel like I am being lectured to and not listened to.
I understand being hesitant to jump into surgery right away. But, if these are separate medical issues, it would seem irresponsible to me to neglect TOS and Eagles for an indefinite period of time. I would like to consult with the doctors who were treating me for TOS and get their opinions on this, or at least have them speak on the phone with Dr G. But my family says "no, you can't do that. You can only see these very few people we've selected and approved for you." They don't even want me to speak to a therapist about my problems.
Sorry for the long post. I just feel like I know my own body and in my case there are some definite issues, potentially quite serious, related to prolonged cardiovascular compression. I think something has got to be done about that sooner rather than later.
I really appreciate the responses from everyone. It's good to have a support group for people like me, even if it is over the internet.
(Edited Lyme doctor name per Lymenet rules - we say last name initial and state)
[ 08-28-2014, 02:42 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
This is an interesting discussion and it raises the question, for me, as to whether Lyme disease can cause these symptoms. I feel like those in the know, like major Lyme doctors who have seen thousands of patients, would be able to answer that.
What's interesting also about your story is here you have a family who's aware of Lyme, when most families aren't!
I'm pming you.
Posted by poppy (Member # 5355) on :
We are not the last word on this kind of thing, as you know. Our advice was based on having lots of people come here with odd diagnoses for rare, or not so rare diseases, that turn out to be lyme related.
It is not impossible to have several things going on at once. One thing to consider is that sometimes major trauma, like surgery, can cause the immune system to be less effective and lyme to get worse. Doesn't always happen with surgery, but often enough. Do you think you had lyme in 2008 or before the previous surgery? Sometimes it is hard to tell when the disease started without a known tickbite. The reason I ask is that I am now wondering about the effect of the previous surgery on your immune system.
Abnormal bone growth is known in lyme. Blood vessel problems are known in lyme. That's where we were coming from.
Who would pay for this surgery?
[ 08-28-2014, 10:38 PM: Message edited by: poppy ]
Posted by lymie_in_md (Member # 14197) on :
The odd part to me is you are in the 5% where the condition recurs after your first surgery.
Lets establish a premise that the body has a normal operating process when it isn't under stress. These organisms in the lyme complex put the body under stress, each one of us biologically handle stress differently. Some may get an autoimmune condition like hashimotos, some like MS, some like parkinsons... This isn't an autoimmune issue, but like an autoimmune issue it is the body expressing itself to the stress of the disease. I'm curious if that is why your llmd is suggesting lyme has to be handled first. It might be a question to ask.
It sounds like from a medical point of view you're in good hands.
Some of the threads marnie has written on the yellow laser using extracts of st john's wort hypericum along with berberine might have some play here. Print some of her threads and show it to your LLMD. You never know...
I hope you can find what is triggering your body to express itself this way and can get past it. I think your intuition is also an aid as to what you should do based on the information given. In other words continue to do what you feel is right make a decision and don't look back. And your right, this is a good place to test those feelings. We've all had the stress of what decisions to make.
Posted by Catgirl (Member # 31149) on :
Fascinating. I would listen to your lyme doc though. You don't know all the intricacies of lyme. He has seen more and knows that lyme and company affect so many other areas and systems in the body that western medicine hasn't even discovered yet (huge).
Lyme is knocking your immune system down and your doc knows it. It doesn't seem prudent to do surgery on anyone when their immune system is down. You could also trigger something else by getting your surgery now.
There are just so many variables when it comes to lyme and company, so you go back to the basics. Immune system down: wait.
Posted by Lymetoo (Member # 743) on :
Thanks for providing more background on your situation rodefeld. Makes more sense and I understand why you are so frustrated.
I hope it all works out for you.
Posted by Judie (Member # 38323) on :
Thanks for the information. Yes, it does sound like separate things going on independent of Lyme (though Lyme can't be helping).
I'm sorry you're so dependent on others. I know the feeling.
Can you talk on the phone in private at your house or get visitors?
It sounds like you need to talk to someone.
I don't understand why they won't let you see a therapist. That sounds rather controlling. I'm sorry you're in this situation.
It's temporary. Keep reminding yourself of that. When you're more independent, you'll be able to seek out help and NOT need approval from others.
You're an adult and have the right to make your own decisions.
Posted by steve1906 (Member # 16206) on :
jrodefeld,
You’re in your 20's, "young", but I agree with you, you’re old enough to make your own decisions.
But, remember, your parents love you, and are looking out for your best interest.
(Your one of the lucky ones, you have family that care you when it comes to these diseases).
I can tell you did a lot of research but, keep researching, before you make any decisions.
You seem very smart, so I’m sure in the end you’ll do the right thing!
Steve
Posted by jrodefeld (Member # 44469) on :
I really appreciate all the responses. And I am definitely going to continue with the Lyme treatments regardless of anything else that might be going on as well.
I have a different question for you all. Have you ever heard of a treatment called Prolotherapy? It's an injection treatment that stimulates healing and strengthens ligaments and tendons. I have had a few treatments several years ago before I was diagnosed with Lyme and I found them very helpful.
I have some pretty bad knee and ankle pain and I was thinking that this treatment could really be helpful to me. What do you think?
Is there any reason why this treatment would interfere with the Lyme treatment?
Thanks for all the help.
Posted by Catgirl (Member # 31149) on :
Its sounds interesting but a doc here says it's appropriate for those with musculoskeletal pain only, and not recommended for people who have underlying conditions that could interfere with healing.
That would eliminate lyme patients as our immune systems are impaired, inflamed, etc. This therapy actually causes inflammation in the area injected. How is your CRP (inflammation level)? If you can get it down to normal levels it might be worth a try, but even then I would run it past your lyme doc.
Lyme treatment has helped relieve and sometimes eliminate pain for many patients. It's not a fast cure though. You have to stick with it, wait and see.
I don't see how prolotherapy would interfere with lyme treatment.
I'm familiar with the procedure you inject something to irritate the tendons or joints such as hyperosmolar dextrose (sugar) is the base to mix with glycerine, lidocaine, phenol, and sodium morrhuate (an extract from cod liver oil). None of these kill BB and I doubt the sugar is helpful in getting rid of BB.
Now it could be more of a lyme oriented treatment if they used something to kill lyme at the injection point. Which might be a question for your doctors to see if one could be included.
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)