posted
hello all. I'm very new here. thanx to those of you responding to my cries for an LLMD. I'm still trying to get to said Dr.
I'll try and remember to break this up a bit
I had a happy little trip to the E.R. the day before yesterday. for the past few weeks I have been experiencing a pain running along the arteries in my left arm and up my neck.
Chest pain as well, of course. So it got really scary the other day and I called 911 here in seattle.
They did the whole work up (except for an echo) and told me that my heart is functioning perfectly.
I told them of my Lyme suspicions actually I was adamant it was Lyme and it just so happens that the teaching Dr. on the heart floor of the hospital is also one of the acting board directors for the infectious disease fellows.
without even hearing me describe my symptoms of muscle twitching, joint pain, severe neck and back stiffness,
increased floaters in vision, chronic chest pain, memory loss, inability to concentrate, intense hangovers from like 3 beers,
ringing ears, flashes of light, greying vision..
and all the other things that you guys don't really need to hear cuz you're all experiencing them as well, he told me
......this is the BIG WIG of infectious diseases now, mind you,
....that it's pretty much impossible for me to have Lyme or any of the common co-infections.
I was actually quite stunned to find out that this dude was exactly like you guys all say they are.
A duck who's conclusions are based on crusty old intellectual concepts rather than real investigation on an individual basis.
that being said, deos anyone here know of or have any symptoms of chest pain with pain along the arteries as well?
the pain is on the inside of the arm and up the neck RIGHT WHERE THE PULSE IS. it's not there all the time and it's not very intense but it's scary.
I'm getting together with an LLMD next week, but I want to kind of forestall another panicky trip to a place that does'nt really want to help Lyme sufferers.
I should note that the episode happened after I had re-adjusted my own Doxy intake from 200/day like the duck in NY that I convinced to treat me told me to take. I pushed it up to 500mg/day.
I know I probably shouldn't be doing that but I need to feel like I'm not wasting valuable time because I'm only about 8 months into my symptoms.
Anyway I love all your posts and insights and support. If I win the lottery, I'm going to give a huge chunk of it to helping people suffering with Lyme
Baladeva
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
With symptoms like that I'm glad you went in for a heart checkup. Heart symptoms are common in lyme, though tests may appear normal.
Your Duck encounter is indeed familiar.
Perhaps soon he and his IDSA co-horts will be routed from their little pedestals. But I digress...
The symptoms you describe are mighty lymish.
You say you're waiting on an LLMD appointment. Have you not done any IGeneX testing yet, then? Waiting on the LLMD's orders on that?
We know your state has lyme.
You could have coinfections. Bart causes a lot of muscle pain. But it could be just lyme. I haven't any chest pain to relate it to. I do wish you luck on your LLMD appointment next week, though. I hope you'll keep us posted how things go, ok?
And if you get some positive bands on an IGeneX western blot, go personally deliver them to the infectious duck at the hospital in the off chance he might learn something (yeah, as IF).
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Baladeva, we have something very much in comon.
we both have lyme
More importantly we both would give the bulk of a lottery big win to help lyme people who dont have the money to get treated from their own resources. helps to buy a ticket tho.. Occasinally here at best. Cause no 'little' win would help many people,,,it would take multi-millions IF that would be enough!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Baladeva,
The first major symptom that I actually called a doctor for, we CHEST PAIN. I wasn't worried I was having a heart attack but knew something wasn't right.
In hindsight, there were other symptoms before this, but nothing severe enough I complained to a doctor about.
I too had times that the pain was running down the left arm, all the classic symptoms that they say you need to be at the ER.
The first time this happened, I just called my Dr's office INNOCENTLY talking of my symptoms and I just wanted to get them checked out.
I was told to come to the Dr.'s office immediately, even though to me, this wasn't an emergency. They ended up admitting me and put me on a heart monitor.
I honestly didn't think I was having a heart attack, but to cover their butts, they have to check. Heart seemed fine so they figured it was anxiety and treated it as such.
A few weeks later, it WAS severe chest pain. Back in the hospital, more monitoring but they decided to do a heart catherization and a stress test.
Again, both were fine and I was given a steroid dose pack and told it would kick in in a few days.
I BELIEVED them...had no reason at this point to not trust doctors, and since it was going to kick in, I went to a wedding a plane flight away.
Instead of "kicking in", I ended up in the ER in this strange state with chest pain worse than before. NOW I know the steroids made it worse after getting my lyme diagnosis five years later....
But chest pain was my FIRST major symptom that made me say "something isn't right". But yet my heart was fine so they proceeded to just keep experimenting with every prescription immaginable to see if anything worked.
The pain spread and other symptoms came out in those five years and I had plenty of mis diagnosis's....
but I'm here to say that my heart tests said I was fine, BUT it all the puzzle pieces came together once the Igenex test was positive and I got myself to an LLMD.
My only advice would be, do NOT let them give you steroids for your chest pain. I ended up having epidural steroid injections for the neck pain that was suppose to be degenerative disc disease and that hit my neurological system.
But yes, yes, yes, yes.....the chest pain was my number one complaint with my "mystery illness" all the specialist couldn't figure out.
Obviously I had other symptoms over time but all tests at that time said it was not my heart, which gives comfort, but get that Igenex test asap.
I wasted too many years believing every specialist out there and sadly had no clue there were LYME specialists.
If nothing else, get a lyme specialist to rule it out or treat you. You are definitely wise to have awareness...something I lacked.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
wow!!! thanks for getting back to me so quickly, guys.
Cathy, what you said had the most impact for me.
I had a very bad leg break about 10 months ago. after that I got a pulmonary embolism related to immobility and driving long distance. the chest pain from that was horrific and I've had chest pain ever since then. everyday. that was one of the reasons why I though It couldn't be Lyme...it's too closely related to my embolism and the resulting pain from that. but then I discovered that having a bad break and/or surgery (I had both for the leg) could provoke the onset of the symptoms of Lyme. I had been bitten like 15 years before and maybe since then as well. For sure i was bitten twice in 2 days about 7 months ago and the ticks were already dead by the time I found them. I did'nt know that you shouldn't just rip them out. I tried alchohol and heat to gettem to back thier way out but they were't even moving.
I went back to the ER after the Pulmonary Embolism because I was scared of having another one.(PE's are WAY too deadly not to go) but they ruled out any misfunction of the lungs ( CT Scan with contrast,pulmonary function test, profusion test via nuclear medicine, echocardio, ekg, cardiac enzyme, holter monitor)
So sometimes I think I'm going nuts from this chest pain. only recently and much more fully driven home by what Cathy's just shared have I discovered that I could be having pain resulting from Lyme. That ALL THIS TIME IT'S BEEN LYME!!!
I'm waiting on the LLMD's office to call me back right now for my appointment in Vancouver.
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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posted
Has your chest pain gone away with treatment, by the way????
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Baladeva,
In regards to your question about my chest pain going away after treatment.....
I have to admit that I only was diagnosed three weeks ago this last Monday so that's when I started treatment.
My chest pain continued for a good solid two years as I look at my medical records and they had me on pain killers, anxiety meds, neurological meds, too many to count.
I was sent to so many specialists that would tell me I had blah blah blah but always followed it up with, "but something else is going on".
Sadly, I was one of those people that had the Elisa test for Lyme. Once in the E.R., once from my M.D. and once from a Rheumotologist and all were negative, so I had no clue where else to turn.
I would think you have a major head start to even be here and asking questions, since I didn't even think Lyme with all my negative results.
When all the specialist had no clue, I turned to a naturopathic doctor and it was him that put pieces together as more and more was going wrong and he took my blood to send to Igenex.
He then referred me to someone he went to medical school with that specialized in Lyme and sent my test results there. They were positive by Igenex standards but not by C.D.C.
I also had sent him all my medical records with all these E.R.'s and hospital chest problems and a list quite long of symptoms but to me personally, the worst symptom was that horrid chest pain.
My LLMD started me on treatment. I started herxing four days into starting the medication which he says leaves no question of doubt that my chest pain and list a mile long that no doctor would relate to lyme was TOTALLY lyme with co infections.
I'm still in herxing mode but it comes in waves so I can't tell you if it is fixing my chest pain. Actually my herxing has been all over but hasn't focused on my chest so far.
But seeing the LLMD, getting the Igenex test and IGNORING anything the ER or your doctors say is the best thing you can do for yourself.
And if they are saying it isn't your heart now, get on treatment before it does enough damage before it DOES become your heart.
As I said, you are very wise to have been suspicious of lyme. I was naive, believed the petty lyme tests that are known to let too many cases slip by.
A specialist in lyme will do you more good than any E.R. and all the various dr's you see there.
Good luck and please keep us posted on how you make out with all this.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Cathy I'm not so wise. Just lucky that a fellow Lymie who posts in the medhelp.org forum tipped me off to the possibility of Lyme.
I'll keep it at 400mg for now, Lyme Ed. I was tolerating that for a week with only moderately worsened Lyme symptoms. hopefully that's actually Herxing happening.
thank you guys again, and i hope your pain evaporates, Cathy
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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quote:Originally posted by baladeva: ......this is the BIG WIG of infectious diseases now, mind you,
....that it's pretty much impossible for me to have Lyme or any of the common co-infections.
I was actually quite stunned to find out that this dude was exactly like you guys all say they are.
We're pretty smart, aren't we!??
Why don't you lower that dosage a bit...maybe to 400mg a day? I'm not a dr...just a lyme patient. I've had chest pain and heart problems, but I can't say it felt like it was in my arteries.
You might try some mangosteen juice to reduce the inflammation in your body created by the Lyme and by the meds for the Lyme.
Hope you're feeling better very soon!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yes, mangosteen juice is an excellent anti-inflammatory and antioxidant, but since you have a heart condition, I think you'd need to try it very slowly, with a lot of water. The juice keeps my eyes normal and reduces pain in my legs.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I ran right out and got some moangosteen, haha. I'm not overdoing anything anymore though since I FINALLY GOT OVER THE BORDER INTO VANCOUVER! WOO HOO!!!
I'm seeing the highly touted LLMD tomorrow. I'm so friggin excited. My muscles have been in a hightened state of twitch mode the past couple of days and my other pains and symptoms have been more pronounced so that;s good.
I had this little fear in the back of my mind that my symptoms would go into a mild lull like they do once in a while and the LLMD would tell me "nah you're fine"
So I'm ready to go into the office all screwed up haha
Wish me luck guys.
the only crappy thing is that Canada really needs to be assurexd that you're not gonna be a burden on the health system if you're not a canadian citizen so they only let me in for 30 days.
hopefully that's enough to get properly diagnosed and get the treatment guidlines firmly in place.
I have a friend in Mexico who has 2 RIFE machines that I can go use after my stay here.
Love and the easing of suffering to all of you,
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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