I've posted here before a while back. I was diagnosed with Lyme infection a little more than a year ago and I have been under the treatment of Lyme literate doctors since. Actually about a year and a half before that, I had another doctor diagnose me with Lyme but the testing was less definitive. I was under treatment with him for at least six months.
Currently I have been working with Dr G who is a Lyme specialist doctor in California. I have been taking multiple different supplements and antibiotics that he has tweaked and modified over the months. I have been on oral antibiotics. And I just recently completed at least six weeks of IV antibiotics, Cephtriaxone to be precise.
The problem is that I'm not feeling any improvement. Not ANYTHING. Not a herx reaction either.
I was diagnosed with a CD57 test and culture for the spirochetes.
However my medical history is complex. I have been definitively diagnosed with thoracic outlet and Eagle syndrome compression of cardiovascular structures in my head, neck, chest and shoulders. I know that the jugular vein, subclavian artery and veins are involved.
I'm a young guy and I'm living with my family at the moment. I am pretty disabled with all this stuff going on so I need help getting to medical appointments. My parents are very avid "alternative health" believers and they are active in pushing me into Lyme treatment instead of treatment for TOS or Eagles compression.
When I first spoke to Dr G, he said that from his extensive experience, I should expect to see improvement at about 10% per month. Sometimes patients feel better much faster than that and sometimes slower.
However, treating me aggressively for a year without a single change in any of my symptoms strikes me as extremely abnormal.
My symptoms are almost all cardiovascular in nature which also ties in to the observed cardiovascular compression in my neck.
I've heard it explained to me that costaclavicular compression from TOS, it can cause the lymph nodes in your neck to not drain correctly which could make you susceptible to infection. Yet an infection would be secondary to the underlying cause.
Another thing that makes me doubt the Lyme as main cause of my symptoms is that my cardiovascular symptoms are VERY heavily dependent on neck movement. For example if I try to turn my neck, it causes a stabbing pain in my throat followed by heart palpitations and transient neurological issues which resolve when turning my head back to a neutral position.
This seems much more related to a positional compression condition rather than an infection.
I have a lot of concerns about this. TOS and Eagles are known to cause blood clots, dissections or even stroke, even though these are relatively rare.
Given the differential diagnoses I have received and the complication of my medical history, I truly feel like I've given the Lyme treatment a fair shot to see if it resolved my pressing symptoms.
I don't really drive myself right now because if I turn my neck, I feel like I will pass out. Yet my parents are adamant that all my symptoms are due to Lyme. I've even asked them to drive me to Urgent Care or the hospital when I've had really bad cardiovascular symptoms to run some basic tests and they have refused because they think it "would be a waste of time".
I've read stories about people with Lyme. I watched the various documentaries that are out there. I don't see anything that really relates to what I've been going through.
I'm just looking for some feedback on what I've been going through. I always thought that IV antibiotics where very effective at treating Lyme that was resistant to other treatments?
Thanks.
** edited name of LLMD per Lymenet rules **
[ 02-28-2015, 05:43 PM: Message edited by: Lymetoo ]
Posted by Notti (Member # 43843) on :
Many of us are familiar with the devastating consequences of misdiagnosis, where Lyme disease remains undiagnosed and therefore untreated.
However, I think we should not forget that the other side of the coin is that Lyme itself can be a misdiagnosis too. Not everything is Lyme.
It's impossible for me to say whether you have Lyme or not and whether it is the cause of your symptoms. It can of course also co-exist with another condition.
You say are not responding to treatment at all and you have serious doubts, that alone is a good reason to consult an ENT or head and neck specialist, in my opinion. Perhaps you can consult the doctor who diagnosed you with TOS and Eagles? Or find a specialist in your area and call the office if they have any experience with it.
Only the right diagnosis and treatment will help you further. You are young, your health will determine the rest of your life. Fight for it.
Best wishes.
Notti
Posted by seibertneurolyme (Member # 6416) on :
If you had a positive culture test from Advanced Labs then you absolutely have lyme in my opinion.
However, it is entirely possible to have multiple infections and conditions. I know nothing about TOS or Eagle conditions. But my advice is to treat all known conditions.
If you had Diabetes or cancer for example you would not ignore that and only treat tickborne infections. It does not matter which came first or even if tickborne infections are the cause of your other conditions.
It definitely sounds like there is something more than just tickborne infections that needs to be addressed.
Realistically 6 weeks of IV antibiotics is not enough to make much difference if the infection is in your central nervous system.
My suggestion is to show your parents this thread and if they are not receptive then find another friend or relative that can help you get to a doc who can treat the TOS or Eagle condition.
In your current situation I do not feel that you can really tell whether or not the antibiotics for lyme are helping. You need to treat your other problems so you have a clearer picture of what your tickborne disease symptoms are.
Many who do not respond to lyme treatment have coinfections which have not been treated aggressively enough.
My husband died from complications from Babesia. In his case everything else was ruled out by the hospital docs and they still refused to believe the tickborne diagnoses. But in your case I do not feel like other health issues have been adequately addressed.
Perhaps your LLMD can help you deal with your parents. Sometimes it is easier to blame everything on lyme, but tunnel vision will not restore your health.
Bea Seibert
Posted by miyamotoi (Member # 41833) on :
Hi I live in Northern CA in Sonoma. What county do you live in and what clinics have you been to?
Have you had any other testing besides the CD57 and culture? It wouldn't hurt to do some confirmation tests at good labs. I wouldn't focus on negatives but whether and of the other tests confirm positive.
What do you mean but "less definitive" where were you tested and what were the results?
There is no doubt its a tricky diagnosis. I would have your heart checked out by a good cardiologist just in case. I wouldn't tell him you suspect Lyme as it can turn many doctors off so just explain the symtoms and ask to have you heart checked.
A stress EKG and heart echocardiogram would sensible whether its Lyme or not given your concerns around cariovascular. A heart problem or nearby aneurysm can kill you, Lyme or not.
How long has this been going on?
Do you recall tick exposure? Where and when do you think? CA county and how many years?
Longer term Lyme doesn't typically respond to even IV Cephtriaxone. So its not surprising.
If you would like suggestions on other testing, message me.
Posted by Judie (Member # 38323) on :
I know someone who didn't experience positive results until she was on her 8th month of IV rocephin. It can take awhile.
Posted by marypart (Member # 27012) on :
A good Lyme doctor will refer you to specialists to check out the symptoms. Not everything is Lyme and even some of the symptoms caused by Lyme should be evaluated by other specialists.
When my son was in treatment he saw a cardiologist and gastroenterologist and dermatologist all for symptoms that were related to Lyme. His LLMD referred him.
Maybe you need to evaluated by a neurologist just to make sure there isn't an impingement of a nerve.
Posted by droid1226 (Member # 34930) on :
Millions of Americans are walking around with Lyme spirochetes in them. Whether they are symptomatic or not is a different story. It sounds like you have an immune system that's handling the lyme but have an associated or non associated structural problem.
May be inflammation caused by lyme or an immune response that makes that nerve inflamed.
Posted by Catgirl (Member # 31149) on :
I agree with Droid about everything. Also Bea: "Many who do not respond to lyme treatment have coinfections which have not been treated aggressively enough."
Lyme does different things to each of us. It triggers gene expression and more. The lyme docs know it does strange things, many of which are new to them everyday (so they are still learning as well), yet all the other docs do not have a clue about any of it. Even though most of your issues happen when you turn your neck, neuro issues and heart palps are incredibly common with lyme.
It takes time and detective work to figure out lyme. Lots of patience to see what works, what doesn't. And six or eight months is nothing. Also, it's never just lyme. My guess is you have some co infections as well.
Trust your parents. Above all, they want what's best for you more than anyone on else the planet.