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Does it get any better?

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Lyme Disease
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Biggs
Regular Member
Joined : Aug 2012
Posts : 23
Posted 8/24/2012 7:43 PM (GMT -8)
I have been diagnosed in Jan with advanced stage Lyme disease. My doc look at my past health records and according to some blood test suspects I've had it at least 8-9 years. I've been told by my GP that I had chronic fatigue and fibromyalgia and had to live with it. I would have to say I slept those years away. Then in 2008 I was diagnosed with breast cancer. Oddly enough after surgery and chemo I felt better. So I assumed it was the cancer that made me sick. about 1 1/2 years later the symptoms came back so I thought I had cancer again. Went thru every test and there was no evidence of it, thank you God, but I was so fatigued and hurt I was put on steroids and pain pills. Just got worse. Then I had bouts of leg paralysis I finally was told to go to a rhuematologist and she was also LLMD as well. Started me on doxy and mino and had such a bad reaction. It was making me so sick. That's when I learned about the herx reaction. I continue with those antibiotics and pulse Tindamax and take a ton of other meds. I hurt all the time and the fatigue is debilitating. I had to take a leave from work. She wants me take iv vitamins before I start the iv antibiotic She says I am weak- will this get better over time? Somedays I feel my cancer will come back before I feel better with the lymes. Therefore I spent or wasted so much of my life! I get mixed emotions, depressed to I just don't care. Is there hope with lymes? Thx for reading
Biggs
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Summer3
Veteran Member
Joined : Nov 2011
Posts : 1020
Posted 8/24/2012 7:53 PM (GMT -8)
I definitely get very worried too about things ever getting better. I've been pretty sick now for about a year despite fairly aggressive Lyme treatment. There are tons of days that I don't see the point in taking meds since they don't seem to be helping. I just try to make it one more day and keep telling myself that.

I have read messages from lots of different people who have gotten significantly better after Lyme. It helps to know that others are getting better, but I wish that I would see the same improvement soon! :)

How are the IV vitamins working for you? For me those are the most helpful. Glutathione in particular can make me feel completely normal (only for one or two days) but it's completely worth it and it keeps me motivated.
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borderlyme
Veteran Member
Joined : Jul 2011
Posts : 1486
Posted 8/24/2012 7:58 PM (GMT -8)
Hi Biggs!

I'm sorry to hear of all you've been through, but I'm glad you finally found the right diagnosis! Sadly being told you have chronic fatigue and/or fibromyalgia and just have to live with it is all too common to those who are actually suffering from undiagnosed tick-borne infections (like lyme disease). I went through the same thing - about 15 years all in all! It does get better, though! A few months ago I was so sick I had really resigned myself to never getting better - I couldn't even walk anymore! It's true that it does usually get worse before it gets better, but you will find whatever makes you feel better and you'll be amazed at how well you can actually feel, especially after being sick so long!

My guess is the steroids you were on may have helped the lyme take a stronger hold - that's what happened to me a year or so ago. I'd been sick for so long but all of a sudden it was like a ton of bricks! I know it can sound like a little thing, but detoxing really has been the key for me. Abx always make me feel so much worse - my body cannot take the herxing at all, and when that happens it means you really need to step in and devote yourself to helping your body to get rid of all the junk left behind from killing off these bugs! There are a lot of suggestions in the new to lyme thread - the epsom baths help, sauna - anything that makes you sweat, in general, and make sure you're drinking plenty of good quality water! Dry skin brushing, oil pulling, drinking fresh veggie juices - these are all things that have helped me immensely.

I think the IV vitamins might be helpful - some doctors also do glutathione with the IV vitamins which I've found to be pretty helpful as well. At the risk of sounding really annoying, your emotions really do play a huge roll in all of this. I've gotten so hurt and angry with people for telling me that my symptoms were "just" depression or that all I needed to do was change my outlook and I'd magically be better - of course it's not quite that simple! But being in a good place emotionally is really important - make that just as much a priority as your medical treatment - find ways to make yourself happy, even if it's just little things. And hopefully knowing that there are so many of us right here who have been in the same boat, so depressed and seriously doubting whether it could ever possibly get any better, have found a lot of healing.

We're here to help however we can! Hang in there!
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Biggs
Regular Member
Joined : Aug 2012
Posts : 23
Posted 8/24/2012 8:06 PM (GMT -8)
I would like to learn more of ways to detox. I read earlier about Epsom salts. What's the oil pulling?
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borderlyme
Veteran Member
Joined : Jul 2011
Posts : 1486
Posted 8/24/2012 8:17 PM (GMT -8)
There are a ton of websites describing it online - I'm sure this one covers the basics: oilpulling.com/ - it's really simple, you literally just swish oil (I use sesame) around in your mouth for 20 minutes (I do it first thing in the morning - supposedly it's best on an empty stomach) and then spit it out in the toilet or garbage, NOT the sink because it might clog things up. It's used in Ayurvedic medicine, it stimulates the detox pathways via the big vein under your tongue - I've been doing it every day for the last couple of weeks and I really do think it's helping! Contrast showers are another little thing you can do easily every day - you just switch back and forth between hot and cold water a few times at the end of your shower, it helps your body regulate itself. All the little things really do add up and have a cumulative effect, and whatever you can incorporate into your daily routine is always the easiest to stick with.
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BBRH
Regular Member
Joined : Jan 2012
Posts : 41
Posted 8/25/2012 6:30 AM (GMT -8)
Hello Biggs and others,

I was going to post a question similar since I have been on a strong regimen of abx since December. I am glad you finally found out that your problems are due to TBI.

It seems many of us have similar stories as having problems and bouncing from doctor to doctor for years before getting proper diagnosis. It is strange that many doctors will throw someone into a category that there is no real test for and not test for Lyme when it has tests that can show positive. On the other hand, it is so messed up that many doctors will steer clear of it and many have no clue or knowledge on how devastating it can be.

Like I mentioned , I have been on abx, glutathione, LDN, Lyrica, and other meds since December 2011. I thought I would be well by now but I have a long way to go. I will say I can do more now than when I started abx therapy but by lymph nodes and neck are still major problems. I am also having balance issues and spells of dizziness ( MRI of Brain shows 6 lesions in white matter).

Like someone mentioned, I am focusing on staying on abx, eating healthy, walking and stretching, and trying to think positive.

Wish everyone the best!
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