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Posted 2/19/2013 12:43 AM (GMT 0)
Hi everybody. I'm having a bad day. How can I go from being fine in the morning to feeling like dying in the afternoon. Does anybody else in here has chest pains? I had a ekg done recently and dr said I'm fine, but this chest pains scare me a lot. Days like today make me feel like I'm never gonna get better.I know its all about being positive, but the pain and fatigue is so horrible, makes me wonder if I will ever get better. And anybody here with ebv and lyme? I don't know which symptoms belong to which illness, lyme or ebv. I'm angry and sad, I was having a awsome morning with my kids shopping for shoes and when I came home, I started feeling the chest pains and the fatigue, and now I'm having the feeling of the crazy head. Ugggh. this is too much sometimes
Posted 2/19/2013 1:02 AM (GMT 0)
That happens to me all the time. I can feel great in the morning and feel like I am going to keel over by mid afternoon. I do not have ebv, so I would have to assume it is associated with the lyme. I hate the chest pains, but I have had many ekgs and they have all come back normal. I still get scared though. I sometimes feel like I will never get better, but then try to focus on the positive aspects of my life. I also, have accepted the fact that I will have to manage my lyme disease just as if I have any other chronic illness such as diabetes. Eat well, exercise (need to do this more), and detox daily.
I hope you start feeling better soon.
Posted 2/19/2013 3:31 AM (GMT 0)
sorry u had a bad day

I like your user name

sometimes i have chest pain too

I usually only have a few hours to get things done, shopping,cleaning, errands, and then I crash on hte couch for awhile

 

Posted 2/19/2013 3:49 AM (GMT 0)
I have chest pain a lot as all tests have come back normal.

They are a very scary symptom! Just today I was thinking as bad as I feel, so much pain, weakness, and then chest pains...

I'm afraid my heart is going to give out :(

No doctor can really tell me what's causing in so it's very frustrating.

I don't think I have EBV so I associate with the Lyme.

I hope you feel better soon!!
Posted 2/19/2013 8:57 AM (GMT 0)
I had/have chest pains for years and years, I associate it with Lyme/Bart. I had EBV, but it I didn't get that symptom then.

 

When it's too bad, I go and see my ostheopath, he loosens all the tension that has build up in my chest. It (really) hurts the first 2 days after treatment, but then it gets really better. It's a scary symptom, but try not to worry too much about it.

I know all about the sudden switchen in energy. Some days start with not too much pain, but it can change from one minute to another and turn into a horrible day. Just go day by day, hour by hour.

 

Posted 2/19/2013 7:33 PM (GMT 0)
This disease is just so baffling. No other words for it. I still get days with chest pains that scare me to death. My LLMD says most time (and never just shrug them off PLEASE) but most times they are spasms caused by low magnesium. Lyme is known to feed off magnesium and any twitches or spasms can usually be corrected by supplementing magnesium.

Also, lyme can cause such things as costochondritis which I believe can come and go.

I have to say that despite feeling well at present I still attitribute a lot of strange onset of severe pains in different joints and muscles to lyme. I'm just able to shake them off and give credit where credit it due - LYME.
Posted 2/19/2013 7:58 PM (GMT 0)
The symptoms of lyme wax and wane. For me, it can vary significantly day to day and hour to hour. I'll be fine, able to go to the store, etc. and then the next thing I know, I feel like I'm going to die (no other way to put it).

I often feel worse upon waking, start to feel somewhat normal in the afternoon and then by evening I'm very ill again. Or, some days, lke you, I wake up okay and then I'm really sick in the afternoons.

I've found that it's best if I don't push myself during those times and try to just rest and watch a funny show or a cooking show-something to get my mind off of how bad I'm feeling. If I can, I also often have to nap in the afternoons to get through the evenings.

I used to have the chest pain. For me, it was caused by POTS, which is a condition I have thanks to Lyme. It's the fast HR that causes the chest pain. It is scary though! But I've had an EKG, stress test, echocardiogram, tilt table test, and my heart is perfectly fine. Of course, do tell you dr. about it though!

Many of us with Lyme also have EBV. The virus is always in our bodies and when the immune system is stressed and suppressed by the lyme, the virus is active. After healing from lyme, the EBV will also become inactive.
Posted 2/19/2013 9:10 PM (GMT 0)
well, tomorrow is my 6th week with the doxy. and tomorrow is my follow up appoinment with my dr. We'll see what she thinks the next step should be. what I feel it happend to me, is that doxy worked, yes, I feel a little better, but i don't see any improvment. like Im stuck, No more getting better. I will tell my dr about this chest pains, about a rash that comes and goes around my jaw/neck area, and my lymph nodes hurting behind my ear, ( and a never ending list of symtoms). hopefully she continues the meds, I wish I could do and IV, maybe that could work for me. I was reading about the grapefruit seed extract, I will ask her that tomorrow too. Wish me luck. Im so confused, I dont know if people get actually better, or its just a myth and we all stay sick forever, I wish I had an answer, because if somebody tells me that this is it, and i wont get better, I can work my head to just be happy living like this, but I keep beliving Im gonna get better but i dont see any changes and then is where the frustration come up. Im sorry, im just having a bad day since yesterday with this horrible chest pains, rash in my neck, and just the crazy head feeling. I always a positive person, but sometimes is hard when you feel so sick. thanks to all for your reply. :)
Posted 2/19/2013 9:15 PM (GMT 0)
Let us know how your LLMD appointment goes! :)
Posted 2/19/2013 9:22 PM (GMT 0)
Ok. I will :)
Posted 2/19/2013 10:13 PM (GMT 0)
iwantmyhealthback,

Yes, many DO get better! It is possible, but it requires a good LLMD with ILADS training.

I can't remember are you seeing a LLMD?

Doxy alone is not enough to get rid of these infections. The bacteria mutates into an L-form and cyst form.

GSE breaks up the cysts which is why LLMDs use it. They typically use that or Flagyl or Tindamax.
Posted 2/20/2013 8:59 PM (GMT 0)
ok. sooo, I went to my appoinment, it went well I guess. she switched abx to zhitro something, and i asked her about herbs i could take together with that and she suggested cat's claw. so I went and got that and the grapefruit seed extract, my multivitamins, a powder called CALM which is calcium and magnesium and she also said milk thistle was good. so Im on that now. she looked at me into my eyes and said, "you are gonna get better, but it gonna take some time", I guess she could read my mind lol. she sent me to do more blood work, and the CD 57 count, we'll see how it goes, I don't know if I mention I've been doing shots of gluthathione, I finished my 6th one today, but Im gonna get 6 more. I guess, it finally settle in my head that I AM gonna get better, but it is gonna take sometime, Im actually learning so much from this. I have to learn to be patient. that's big for me, cause Im an always on the go person, I love running in life to get what I want. thank you all for reading my stuff, it makes me feel good, like Im not crazy, or alone. thank you very much.
Posted 2/20/2013 9:23 PM (GMT 0)
iwantmyhealthback I know how hard it is...

I was always active, if I wasn't busy working I was volunteering, or out with friends...always doing something!

When I asked my LLMD how long until I start to feel "normal" again he said 2-3 years...I was so disappointed, it feels like a lifetime!! But I'm ready to do it and move forward.

I'm not saying this is the case for you because everyone is different. I've been very sick for 3 years and showing symptoms for much, much longer than that. I just saw my LLMD for the first time a couple weeks ago.

I know it's hard, but you sound like a strong person. Hang in there!

I'm taking Zithromax too btw, I just started it about 13 days ago, along with Rifampin. Are you taking any anti fungals? Probiotics?
Posted 2/20/2013 10:26 PM (GMT 0)
no, no antifugal or probiotics? should I buy some probiotics?
Posted 2/20/2013 11:20 PM (GMT 0)
I would definitely suggest probiotics especially while on abx! Make sure you get a good brand, I use a 50 billion strain. The kind that require refrigeration are said to be the best.
Posted 2/20/2013 11:22 PM (GMT 0)
ok. thanks. I have more questions but I guess I will start another thread so this one wont get too long :)
Posted 2/20/2013 11:23 PM (GMT 0)
Here's a link that explains the benefits of probotics especially when on abx:

http://health.howstuffworks.com/wellness/food-nutrition/vitamin-supplements/probiotics.htm
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