My pain is now constant have fevers chills, the symptoms change constantly going round and round in circles and I am so disconnected to life getting a little scared.
I can only stay asleep for two hours at a time dont know why I wake up some time its pain other times i need to get outside for the cooler air and the the ice cold, I feel like I am going crazy.
Food makes me feel nauseated, I know i am not spelling right or probably making much sense
Been through so much this month LLMD did MRI showing extensive white matter disease and suggested MS. Saw the neuro doc yesterday and we viewed the MRI together - so many lesions - he only found one that looked like an MS lesion. Am booked for an Evoked Potential test.
I don't want to come of the antibiotics and I don't know if this is a herx or maybe not enough good bacteria or just the stress of the last few weeks.
any suggestions, really need some clear thinking maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
yeah take a break. I've been of Biaxin a week and almost feel normal, it's strange. but I know I will go back on when this stuff creeps back in.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I went on biaxin, it gave me insomnia, anorexia, and anxiety. It got worse each day.
By the 4th day, I could not sleep a wink at night and could not eat even one spoonful of food. Called the doc and he laughed and said to stop the biaxin.
Biaxin has so many possible side effects. One is psychosis! It can make you feel like you are going crazy. Nausea and vomiting are also a side effect. Mood changes also.
So, you may want to ask your doc for a different med. Biaxin isn't the only med you can take for lyme. Once side effects get too bad, it is time to consider changing meds.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks, never even thought abou the wrong antibiotics.
maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
I couldn't tolerate Biaxin either...I've been off of it for 5 months now and still am dealing with the damage it caused.
So I agree with TF...ask your doc for a different antibiotic. Good luck!
Posts: 345 | From East Coast | Registered: Apr 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi maps,
I just wanted to say that I am sorry that you are feeling so bad and having such a hard time.
I hope you talk to your LLMD and get another antibiotic.
Also, I relplied to your post on the PH board about hyperacusis....I love it when we get a chance to post info about how CFS symptoms and FMS symptoms are very likely lyme....good job!!!
I will pray that you feel better and get a med that you can tolerate and improve on.
Take care.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Just wanted to mention. I tried biaxin for about two months and COULD Not tolerate it even at small doses.. it was HORRIBLE>
I stopped it and it took some time to recover.
After a few months my doctor still really liking the drug.. well i had some left and I tried it again.
OK this time I tolerated it just fine.. Just about two months after stopping it.
WEIRD HUH?
So now I can take it.. Not taking it this moment but I did for a month and when I switched to IVS I stopped for now.
But is that not interesting?
So do not count out things forever that you react to.. I do not do that anymore and always stay open to revisiting it..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Spring.. You probably had a bad herx and when you went back on it, the herx was no longer a problem. (You had knocked down some of the bacteria with it.)
I took Biaxin for 18 months! It was good for me. I'm sure I had side effects, but they were tolerable for me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
most likley the "side effects" and "reactions" you all are experiencing and reading about are herx reactions.
often times IMO in clinical drug trials people who have undx TBDs, etc, are used (as there is a large # of the population w/ it unknowingly, again, IMO) and the "side effects" are merely herx reactions.
don't get me wrong, abx can be harmful, and toxic, but the myriad of side effects listed way too closely aligns w/ herx reactions and/or lyme and co symptoms........
its pretty clear to me, although, i could be wrong. its happened before!
keep hanging in, its a long journey, but there is a light at the end of this tunnel, albeit dim at times
-d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
You all might be right. I might have been a herx. But it was like no other herx I felt before. And I have herxed many times and have taken many many meds..
it was like my blood and every cell in my body was poisoned. It feel like poison. It was a horrible icky feeling that i had to just lay there and hope for it to come out of my body.
As well it would. If I took it I felt it hit in about 2 hours and then at about 8 to 12 hours later I felt it come out of me.
What do you think of that? Do you still think a herx?
And that feeling and taste and sensations all disappeared until I took my next dose and I did it all over again.
It was horrible.
Come to think of it. I will say I had a similiar reaction just to the FMS medication they advertise on TV> I just can not remember the name of it right now.
I would have onset of episode of posioned feeling and then it would disappear after half life time was hit.
And it did it over and over each time I took it. I just lay on my bed in ball rocking my body just waiting for that time frame.
And it always stopped after the half life time...?
So who knows.. right?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
yeah i have been pondering the half life theory thing recently myself, although either way you look at it i believe its some sort of a herx.
the toxic poisoned feeling is most likely die off, the question is how much can you/we/i take.
it can be brutal at times and feeling as though you are dying, as i have been lately, is not a cool feeling.
eveything in you tells you not to take the med anymore although you dont really see another way out of the quandary.
try gentle detox, such as burbur and parsley NM tinctures as well as drinking plenty of water and trying to stay focused on anything but how bad you feel (i know this is hard)
best
-d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
often times IMO in clinical drug trials people who have undx TBDs, etc, are used (as there is a large # of the population w/ it unknowingly, again, IMO) and the "side effects" are merely herx reactions.
I agree. Bigtime!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks tutu, seems the longer people have lyme the more they come to realize how wide spread and how permeable it really is.
duno if this knowledge is good or bad since it seems that everywhere i look i see lyme.
someone will need to answer for this all eventually, who i am unsure.
-d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Biaxin was the hardest med for me. I only stayed on it for 1 month. You might just need another antibiotic.
Also you might need a week or so break. Give your body time to detox and then start again.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I took Biaxin XL (extended release) and it worked so well for me I actually went off it for 6 months but when a few symptoms came back and I went back on it, and then it ripped my insides apart.
It's a powerful ABX ~ proceed with caution!!
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
What are the thoughts on that as compared to Zithromax?
Posts: 3528 | From US | Registered: Apr 2007
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I feel we are like a tag team . Left a message on CFS board and told them you would be along later with all the good links hehe, you have probably been there already.
We can only but keep trying.
Great visit with LLMD yesterday, must update the finding a doc information here. He changed to azithromycin and something else, sorry it's downstairs, no energy for that.
Take care maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
Coming in late to this thread, but here's my two bits anyway...
I was on Biaxin and Plaquenil together for 4.5 months. I don't know if it was the Biaxin or the Plaquenil, or both, but I had certain symptoms I'd not had previously.
Hot flashes. No sweating, but huge internal heat, so much that I'd sit in a cool room with no shirt on and ice packs under my arm pits. And it's not menopause - I'm a guy
Insomnia. Greatly worsened on these drugs. Particularly "restless legs" and abrupt wakeups from deep REM.
On stopping the regimen, the hot flashes disappeared immediately. The insomnia is still a problem, but not as bad. My LLMD prescribed Neurontin (low dose) before bed, and that really helps. I wake slightly groggy, but it's much better than not sleeping.
Even though I'm not a fan of sleep meds, Neurontin is my hero these days. I've weaned down to a single 300mg pill, but don't know when I'll be able to stop taking it altogether.
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