posted
I haven't been posting because I've not been feeling well. I'm physically and emotionally at rock bottom. I don't know where to go and I need help from others who have been there. Please help, guys!
I recently had an apt with an ID Dr. The apt was set up a long time ago and because I'm not getting any better I went anyway. She was very nice and took a good history. (I was diagnosed clinically with Lyme back in January and have been on antibiotics since.)
She told me in no uncertain terms I didn't have Lyme and that even if I had, as much antibiotics as I had been on I would have been cured a long time ago. She did agree to do a Lyme test. No word yet.She felt my symptoms were hormone and stress related.
The same week I had an apt with a neurologist. I was referred because of the numbness in my one arm and hand, the curling in of 3 fingers, the numbness that stays for days in my baby finger, the vision problems,leg weakness, etc. He didn't even address those with me. He told me any problems I had in my head weren't neurological and that I don't have Lyme because we are not in the Lyme belt and I didn't have a bulls eye and I don't have a positive test.
Many of you say my LLMD is a good one and that I should stick with him. I'm having symtoms that no one else on the board seems to have and even the LLMD seems stumped.
I have episodes where the head pressure, chest pressure, and ear pressure all intensify. It gets harder to breathe. My blood pressure spikes up. Sometimes I have increased chest pain and numbness. All I can do (if I am in a place that I am able) is to lay down and try to let it pass. These episodes can last minutes or hours. Sometimes even a day or more.
I've been told that these are panic attacks, but I don't think they are. They come on no matter my mood, I can be laughing. They usually come mid morning, mid afternoon, and then again inthe evening. No one else on the board seems to having these "surges". I call them that because it feels like something in my body is surging and causing the episode. Once whatever surges stops then I'm OK again.
I am so much more emotional. I can cry over anything now, but I don't feel like I'm depressed. In the year before I was diagnosed I was put on SSRI and SSNRIs one right after the other. None helped. Some made me much worse. I do feel anxious. I take clonazapam. It doesn't seem to be helping.
Where do I go from here? I can deal with the pain,the brain fog, almost everything else that goes with the Lyme, but the "surges" and the anxiety and crying are getting to me.
I don't know what to do. I had to leave work today I was so bad. I need to work for the insurance. I'm desperate. Please someone out there give me some suggestions. Thanks
Posts: 237 | From WV | Registered: Mar 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
HI,
I recall your pen name so your post caught my eye once again.
Others will come along with some ideas that may help.
I just know how scary this can be. I also know how difficult it is to get help.
It sounds like you are doing all you can.
I did go to Samsun Clinic in Santa Barbara and they did something with a computer and running something over my heart to see if the valves were working OK.
I am sorry, but I can not recall what that is called now.
I just know that by the time I got there, I had seen over 35 doctors in a period of 18 months.
They were the first to consider looking at the heart. So sad.
And I don't know why I thought of that with you.
It is nice to rule out other possibilities.
It is sad that the medical field seems to be at a lost for the most part when things attack the inside of our bodies.
Here's hoping that these symptoms will be behind you soon.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Are these "surges" sort of electrical in feeling? I had that a lot for a while.
At each visit my LLMD will still ask if I am getting them at all. It's a very common Neurological Lyme symptom. I call it "internal vibration", but it also takes the form of "surges".
I had a bad experience with a Neurologist (in the Lyme belt, mind you) and he said I didn't have Neurological Lyme because he has never seen Neurological Lyme. Okie dokie.
Long before I was diagnosed I would get chest pain (as a major symptom). So yours may be Lyme related.
Panic attacks and anxiety are both lyme symptoms as well.
Maybe if you describe these symptoms in greater detail, others here may chime in to say that they've experienced what you have and that it is indeed Lyme.
Your emotions and depression may be side effects from the abx. Just a thought.
Good luck!
Posts: 366 | From MA | Registered: Apr 2006
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posted
I didn't see anything in your symptoms that WOULDN'T or COULDN'T be Lyme.
I don't remember who your LLMD is...but if you have one, then skip the ducks. What the ID duck told you is the same crapola that they ALL say to those of us who are ill with Lyme.
Do your homework and continue to take your antibioitics would be my advice. You don't want this infection to run rampant in your body.
Neurologists are in the same camp as the ID ducks....they all quack!
Maybe something in here will strike a nerve with you:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I've had every symptom you mention. This may depress you more but in a weird way it cheers me up- that in the differential diagnosis for MS and ALS and Parkinsons is... Lyme disease yes but that's not the tihng I'm making a point about...
HYPOCHRONDRIASIS!!!
So in the days before getting these horrible devastating diagnoses people with serious neurological diseases OFTEN get treated the way you are being treated- like (!^@$!!!
You deserve better- everyone does.
If you have a good LLMD stick with him/her. You sound VERY Lymelike. or TBDlike I should say.
I have blood pressure spikes with Herxing.
I had emotional explosions which began to happen in time with my menses, anger ones, but often with a wildness and intensity that sounds like what you are describing. A freedom. Of wildness. Where it felt like I could do anything- where I felt crazy- for me that was Babesiosis.
I was also diagnosed with panic attacks.
For me Babs was also responsible for chest pressure and chest pain.
If you feel like you are DOOMED you are in the right place- that feeling of DOOM is often Babesiosis!!! That feeling that you are DYING is often Lyme()! It is funny the things oyu pick up after years around here- the subtlties that sound weird maybe to newbies*)!*)!
That feeling that you have woken up in a strange, strange world, is Lymeland, is your new reality. And it can be, believe it or not, a nice place, once the symptoms are gone.
The sickness sucks!!! Stick in there until you get better!!!
The ID doc sounds like a )!&^%!$! NOT GOOD doctor!!! Don't listen to her! Don't listen to that other doc either!!!
Listen to who respects what you say!! To who it is who respects you-
You sound reasonable!!! You don't sound deranged (even if you are at moments like many of us*)!!!
Suggestions!!! Yikes!!! Since you have been diagnosd with Lyme (correct me if wrong) then I would really ask to be evaluated for babesiosis because the emotional lability fits that to a B!! BAD news- the herxing with that is even MORE emotional!!! GOOD NEWS- you can get rid of it!!!
Lyme can cause it too but in my experience it is most often Babs-
Good news- you don't sound crazy here- you sound AVERAGE- like an average old Lymie!!!
Glad you are here, Don't kill yourself!!! Sit on your hands if you feel suicidal- or use them to call someone!! You CAN get better!!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hang in there! Since you have a good LLMD you will get better! It's just taking a while but you will get there.
Here is a suggestion for you: Have you ever tried craniosacral therapy?
It can be very good for settling down an overactive nervous system, regardless of the cause. It might help you feel better.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Thank you a million times for your responses. I have questions for you all but I just can't stand the computer any more right now. I will post questions as soon as I can. God Bless you all.
Posts: 237 | From WV | Registered: Mar 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I've had a lot of similar symptoms: vision problems leg weakness numbness fingers seizing weird emotions not congruent with my "feeling" inside
For me, most of those symptoms have gone, though 2 years of antibiotics, though I continue to experience periodic numbness.
As others have said, the panic attacks are part of it.
I'd also suggest sticking with your LLMD. After being on abx for about 6 months, I started having more numbness and also the seizures.
At that point, my LLMD started me on Rifampin, which really seemed to help.
One other thing you might want to do is to keep track of your symptoms, if you aren't already. On the site: lymepa.org there's a symptom list. For me, tracking my symptoms proved really helpful when I saw my LLMD...and, as I began getting better, the symptom list gave me a tangible way to see it.
Take care of yourself and just keep coming here to talk about it!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I got not quite panic attacks but spells where my heart would race and I would feel nervous. I used to think I was nervous so my heart raced, but actually I figured out that my heart raced first, making me feel nervous. It has nothing to do with your mood. I had absolutely nothing to be nervous about!! Try taking your pulse while you have a surge and see if it is elevated. Lying down is a great idea! We have to treat the symptoms, no matter what the cause.
Keep working with your LLMD to see if you can find something that helps. Your ID doc doesn't know much about Lyme.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I have all that also, and I'm not on ABX right now. My lyme is way out of control, and I have been where you are...doctors telling me it was all in my head.
One day, after my horrible headache,chest pressure, and arm/leg numbness wouldn't go away after 4 months of me yelling at doctors, I went to the ER.
With in 5 minutes I was diagnosed with 4 pulomonary embolisms and confirmed with a CT Scan. I HAD 4 BLOOD CLOTS IN MY LUNGS!!!! Hypercoagulation can happen with Lyme and it did with me.
I was a walking time bomb for 4 months or longer. I could have died if it wasn't for the ER doctor who listened to me and didn't pass me off as a Lyme-thinking freak.
Don't give up. If you feel something is wrong. Keep searching till you find that one doctor who understand.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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bettyg
Unregistered
posted
i'm so sorry to read everything you are going thru with no relief by mds...good/bad!
you joined in march, so i don't know if you got my newbie package of links, advise, tests, symptoms, disability, much more, and treepatrol's newbie link of 1000+ links!
i'm going to send you a private message now with tat all .... note 1st page is the SUICIDE NOTLINE 24/7 NUMBER, please write it down and put by all your telephones should the need arise!
WE ARE ABOUT YOU & ALL LYMIES; we're here to help you over the humps, but we aren't trained professionally only emotionally with our own lyme problems.
please reply to my PRIVATE MESSAGE, and give me your full llmd's name; i'll check my lists to make sure they are on it ok!!
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I am so sorry for your suffering. Truly, no one deserves to go through something like this.
I am a newbie, so I'm not very qualified to give advice.
But I do know one thing: Trust your body, what you are feeling, and believe in yourself.
I had one of the best ID doctors in California tell me that I definitively did NOT have lyme; and I had to listen to him basically conclude that I am a pathetic, attention-seeking malingerer.
I knew in my guts that this wasn't psychological; I wasn't just "stressed out and run down," as my friends suggested.
Yesterday, I found out from the Dept. of Health that I am indeed positive. I also tested positive for bart.
My symptoms don't seem as severe as yours; but I have had the ear and head pressure sensation and I know how horrible it is. When it happens, I become overwhelmed with the fear of dying.
Like you, I have never had a panic attack before this.
Please don't lose hope. Things will get better. Slowly, maybe. You just need to survive each day, one at a time.
Posts: 390 | From Oakland, CA | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Is it possible the heart racing could be do to NMH???
I know it makes my heart race like that.
The stuffy head thing for me is babesia.
Babesia also causes a lot of anxiety attacks/panic and just plain
Doomsday thoughts.
I get tingling/numbness in my fingers also.
Much more in the cold than in the warmth.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Food allergies and electromagnetic pollution are a big part of chronic Lyme and coinfections.
I personally have had some success by eliminating all of the most common food allergens as I wait for my coinfections to show up including: wheat and all grains, corn, soy, dairy, eggs, yeast, red meat, fish, all seeds.
These amplified my bouts of anxiety and air hunger.
I even discovered I was reacting to the chlorine vapors while showering and almost passed out numerous times.
Hope you feel better soon. I know some people on here have had their food allergies eliminated with minocycline, but I'm not on that one yet.
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posted
Thank you so much to everyone who responded and double thank you to those of you who were kind enough to PM me.
I'm answering you in turn a little slowly. First, Lyme brain, Second, computer problems so I wanted to come here for a general thank you.
I saw my LLMD today and he doesn't recognize the "surges" either. I guess I have to chalk it up to some weird lyme thing.
Ironically, the ID Dr (she rates a Dr, instead of ID duck because she was very thorough,actually listened, was kind, and admitted there was "some controversy" over Lyme)called me on my way home from the LLMD to tell me I definitely don't have Lyme...
Please God let them find a cure soon.
Posts: 237 | From WV | Registered: Mar 2007
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Cobweb
Unregistered
posted
I recently went to the ER because of a "surge"-as you call it-thought I was going to die. Good description. While I was there I began to feel better-of course-after several hours , bloodwork and tests.
ER doc wanted to keep me for more tests-but I really really wanted to go home so I told him to call my lyme doctor-which he did. Since the bloodwork was negative for stroke or heart attack, LLMD said it was probably a herx (the mother of all herxes if you ask me)
I went home and have been fine since-that's all relative of course. Anyway my LLMD says she sees this in a lot of her patients-she didn't get that excited about it.
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