posted
This world of Lyme Disease and treatment is very foreign to me and I would love some feedback from those that have been living through this nightmare.
My mother, after 2 years of misdiagnosis, was diagnosed with Late Stage Neurological Lyme Disease on 4/30. I will spare you the details of how we got there, but she got very sick. She has ALS/MS symptoms. She can hardly walk, and she is very weak.
We found an LLMD that we are pretty happy with and we started the Lyme protocol on May 6 (Oral antibotiotics first). She got the IV port implanted on June 3rd. We are also on a lot of supplements and gluten free diet (she has the MTHFR mutation) and MB12 shots.
My mother started having some strange changes the second week after she started the oral antibiotics. Her voice got really strange (like she was drunk) and she started chocking with water more than usual (dysphasia) and started difficulty breathing (lots of air hunger). She has to be on the wheelchair more frequently than before because she has a lot of trouble walking and breathing. I didn't know it was Herx, so I freaked out. We had to stop the physical therapy due to her breathing problems and weakness. The Doctor explained that her new symptoms were due to the die-off effect so we are now better informed. But this is FREAKY.
My mother started the IV antibiotics (Mepron) on June 8th (last week). We thought she was reacting okay to it until Thursday when she starting having severe issues breathing and her voice was worse (she sounds like she is drunk) and she cried for no reason. It was a very stressful day for my father and me. Herxing again. The doctor prescribed Ativan for the anxiety and that really helped with the breathing and the crying. Her voice is okay sometimes but very weird most of times.
The only positive thing we have seen since May 6 is that her involuntary muscle twitching is 90% gone. So I assume that we are on the right track.
Has anyone on this support group have been affected this severely and gotten better? How long did you Herx? How long until you felt better? I am looking for words of support.
She started oral Septran yesterday and she looks tired and weak today. And we start Flagyl next week. 9-12 months of IV antibiotics.
This is taking years of life from me This is a horrible disease. I know every person is different and that my mother may or may not react as text books have documented. But I would like some support words if anyone out there has such to offer.
posted
Unfortunately there is no textbook that everyone's treatment follows.
I herxed on day 3 of if meds, terrible cognitive issues and anxiety. About one month later, I got what felt like flu like symptoms for a week.
So for me I had an initial mild reaction, then a month later another die off ( probably due to the growing cycle of the bacteria)
Some people are so sick they have serious reactions.
Has your mother been tested for coinfections? They can complicate treatment. My babesia gives me air hunger.
Interesting her doctor would use iv mepron. Mepron made me VERY sick.
I'm sure others will chime in with advice, but if she is herding severely, she probably needs detox support. Your body has to process this all out, and helping the liver detoxify can lessen herx reactions.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Alex,
So nice of you to come looking for info to help your mom. We should all be that lucky to have a good support system.
First thing I'll tell you as a mother, she feels 50 times worse than she looks, but she doesn't want to worry you or your dad. What she needs is time, rest and lots of understanding.
Here is some info that may help her. Do check with your doctor if something is unfamiliar or doesn't seem right, ok?
Any help she can get around the house, good meals she doesn't have to fix or clean up after, a little pampering, but not doting, would probably make her more comfortable. But also watch for her to toss you out on your backside too for no good reason. HA!
Knowing her symptoms can hit, then stay, get worse, or leave at any time would be good for her to know so it isn't so scary. That is "normal" in the Lyme world. Not fun, but rather normal.
If she is more emotional let her know that is ok. She may become very moody and cry. She may be anxious and jittery. She may be angry. Emotions can range all over the place.
BUT, she will get better. I can't say how much or what exactly will improve, but she should eventually have better days. It may be a while before that happens and that can be very discouraging, but tell her to hang in there. She may have a good 1/2 day followed by two down days...
But soon she will get a whole day that is good, then a bad day, then a good 2 days, and one bad day... etc. Eventually she should see more parts of good days and less horrible days.
Feel free to come back and ask questions and also have her join too if she is up to it. We've been there and are willing to at least sympathize with her, and or keep her company so you can take a break.
Also be careful of the Ativan. It can become addictive very quickly and then you have ANOTHER problem in your hands. It will work AT FIRST and then she will need more and more to get the same effect.
She may benefit from an increase in the amount of magnesium she is taking (I hope she is taking some, as most drugs deplete our magnesium.)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
supplemental Medical oxygen and or oxygen converter would be a huge help, use the nasal cannula, Rx necessary. But can get an O2 converter w/o Rx, 3 ml pm. Or more. Must be high quality machine.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
After three weeks of ativan I went nuts. It was great at first. I am using xanax now, but it is in the same class as ativan. I only use it when the anxiety is so high I just can't take it anymore.
I had severe muscle twitching too, and my limbs jumped without my permission. They still do on occasion. Docs were telling me MS, or ALS.
I never hit the point your mom is at. I'm really sorry for the pain she is going through, and I will pray for her. She will improve with time.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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This is a horrible disease. I know every person is different and that my mother may or may not react as text books have documented. But I would like some support words if anyone out there has such to offer.
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