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My mom might have Lyme-please help!!

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Posted 3/13/2017 6:30 PM (GMT 0)
Kari-Since your mom tumbled so quickly it makes me wonder if she was on or has since been put on any type of steroid. Has she been given any cortisone injections? I ask this because cortisone blocks the immune response which would have allowed the bacteria/disease to have free will on your mom's system. If her current treatment includes anything like that (prior to seeing the Lyme doc) it might be a good idea to discuss that with her doctors. Just a thought.
Posted 3/13/2017 7:29 PM (GMT 0)
Excellent point jrpsf!

It was steroid injections in my knees that really got me with some messy symptoms also.
Posted 3/13/2017 8:13 PM (GMT 0)
Does anyone have any idea what we might see improvement with first? I am so worried we will not see improvement and we will be stuck with this diagnosis of ALS sad I would think maybe her breathing would improve and maybe the pain? I know her arms and legs will most likely take a long time to come back and a lot of PT. Just wish we could know for sure. I have read that Igm 25 is the specific band for Lyme, but then everyone always says Igm 23 is also specific and very significant. So confusing.

-Kari
Posted 3/13/2017 8:15 PM (GMT 0)
Jrpsf - no steroids at any time. Just bouts of serious decline with times of a plateau in between.

-Kari
Posted 3/13/2017 8:30 PM (GMT 0)
Kari, I am sorry there is no way we can predict where and when she will see improvement. Each of us is different in how we react.

I do have to forewarn you that she may see an increase in symptoms or even new symptoms when treatment starts. At least that will show the antibiotics are hitting something.

Hopefully you and family will have learned about assisting her body de-tox of the dead microbes, and how to provide supplements to support her immune function. That is a big part of the healing picture. At least they are giving her probiotics, that is really good news!
Posted 3/13/2017 8:33 PM (GMT 0)

KariW93 said...
Does anyone have any idea what we might see improvement with first? I am so worried we will not see improvement and we will be stuck with this diagnosis of ALS sad I would think maybe her breathing would improve and maybe the pain? I know her arms and legs will most likely take a long time to come back and a lot of PT. Just wish we could know for sure. I have read that Igm 25 is the specific band for Lyme, but then everyone always says Igm 23 is also specific and very significant. So confusing.

-Kari

Take a look at this - Dr. Horowitz interview:

www.publichealthalert.org/-interview-with-dr-horowitz.html

He includes band 23 in his list
Posted 3/13/2017 8:37 PM (GMT 0)
It would be very helpful to her, her family and caregivers if she could try to write down her symptoms daily. I understand in the shape she is in that would be difficult. If someone is seeing her daily, perhaps she could dictate them so someone else can write them down.

It's so easy to lose track of every little change, particularly when there are large symptoms overwhelming her that may not go away for awhile. There are a myriad of odd aches/pains and what the heck was that kind of issues that come and go with these infections. They can affect every single part of our body, randomly. So somehow writing them down, at some point she can look at it and say, "oh, I haven't had that for awhile". Which would be an encouragement for all involved.
Posted 3/13/2017 9:27 PM (GMT 0)
I seriously cannot thank all of you enough for your help with this. I know everyone is different with their improvement, just trying to think of what might be first. July - that's a great idea to keep a log of her symptoms everyday. I definitely did not think of that and will do so as it will make it so much easier to keep track of everything.

The doctor didn't say much honestly other than he's starting her on the antibiotics and the probiotic. Other than that we weren't really given any idea of how she might react and we certainly weren't told anything about detoxifying. This thread is the first time I've heard about it. This is why I'm a little skeptical of the doctor.

-Kari
Posted 3/13/2017 9:43 PM (GMT 0)
Kari, most doctors have no idea about de-toxing. They may know about certain methods that we use, but not how beneficial they can be to counteract what happens when the already depressed immune function is asked to step it up several notches to remove the battlefield clutter.

A good binder is also essential when in treatment. Substances like charcoal caps, betonite clay, diatomaceous earth (I am sure I spelled them all incorrectly) can be a big help removing everything from the digestive tract.

Charcoal caps are the easiest to take, but all require a good large glass of water with them. AND it is very important to wait 2 hours past having taken anything by mouth and knowing there will be another 2 hours clear of ingesting anything after the caps. It sponges everything out and can be a blessing when the patient feels pretty much like they aren't handling the treatment well.

Necessity is the Mother of Invention, right? Anyway, don't blame him for that. Give him a hug for the probiotic!

Hopefully whomever gives your Mom her probiotics knows not to give them to her just before her antibiotics, or they will just get destroyed with the bad.
Posted 3/13/2017 10:59 PM (GMT 0)
Oh boy. I guess I have a lot to learn. I just so hope she starts showing some sort of change so we know. By the sounds of it and everything all of you have said, my mom most likely has Lyme. It's definitely going to be a long fight after the fight we've already been fighting the last 6-7 months, but at least this is something we can work with!!

-Kari
Posted 3/13/2017 11:04 PM (GMT 0)
It is a learning curve for all of us, Kari.

Not enough research has been done. We learn a heck of a lot from each other here and get ideas from others's experiences because too much of healing from this is trial and error.

But, we're here for you, and your Mom, and will do everything we can.
Posted 3/14/2017 12:35 AM (GMT 0)

KariW93 said...
Oh boy. I guess I have a lot to learn. I just so hope she starts showing some sort of change so we know. By the sounds of it and everything all of you have said, my mom most likely has Lyme. It's definitely going to be a long fight after the fight we've already been fighting the last 6-7 months, but at least this is something we can work with!!

-Kari

Please find out what the antibiotics are...and the dosages...

I may have missed it in your posts...but what Dr. prescribed them...her regular GP? or ?

Also, are you able to administer detoxing supplements...is it allowed in the nursing home? or does everything have to be approved first?
Posted 3/14/2017 1:08 AM (GMT 0)
Dr martz said the arthritic pain subsided within the first few week of iv antibiotics ...for me it was a month ...some one said theirs went away with clarithomycin ....my lyme nurse says the statement "you will feel worse befor you feel better " i know of a few people who have gone from deaths door to much better with bee venom therapy...
best of luck do keep us posted ...100 billion probiotics a day is minimum while on abx

with other als lyme persons it was always a medication or a trauma that initiated the wasting ...even something like beta blocker or antibiotic for tooth ?

this guy is very informative a als survivor too
www.shackel.org/mytheory.html

Post Edited (bluelyme) : 3/13/2017 7:11:33 PM (GMT-6)

Posted 3/14/2017 1:19 AM (GMT 0)
Found out tonight my mom is taking 250 mg of malarone and 100 mg of doxycycline I think both twice a day. Along with a probiotic. Are these normal to take for the beginning of treatment? She started taking the doxycycline Saturday, and the other one today as we were not able to get it until today. So far she said she feels no different but I know it's going to take some time to show any sort of change. I just worry that this is als and I'm reaching for nothing. But I think the igm 23 is significant enough though with her symptoms that she should show something with treatment. I really believe this is Lyme disease.

-Kari
Posted 3/14/2017 1:43 AM (GMT 0)
The malarone is for babesia but is usually paired with a Zithromax. ...the doxy will get the lyme to encyst but not kill the round forms ..actually makes more ...but may give some relief ...it need to be 200 2x a day

you may want to take her to jemsek or order rocephin yourself and admin as intramuscular shots until she is well enough to get a picc line or a port for iv administration. .

read doctor burrascano guidlines ....with head and heart involvement iv is recommended
also a lady on Lyme net was in a similar predicament ...enter als in the search there also ...
bartonella ...and others may be at play here also
Posted 3/14/2017 2:00 AM (GMT 0)
Although doxy isn't the antibiotic most commonly seen with malarone, it is one that is prescribed sometimes.

LLMD MR has doxy with malarone listed in his protocols.

It's actually good that she started with one first...I would have liked to see her stay on just the one for a week before starting the malarone.
With her severe symptoms I am concerned about herxing.
But it really should be increased to 200 mg twice daily.(the doxy)

Is she drinking a lot of water?
Are you able to add some lemon juice to some if her water? (This is for detox)
Your mom will need to flush out the toxins that will flood her body from the die off of bacteria.

Also she should be on a liver support supplement - can you talk to her Dr. and explain she needs to support her liver. Milk thistle extract can be purchased at a health food store.
Posted 3/14/2017 2:14 AM (GMT 0)
This is all a lot to take in. We are trying to get her to continuously drink enough water as I know that is very important. It's difficult though as she is on the bipap machine all the time and has trouble breathing if she's off it too long. I am also concerned about her symptoms getting worse. If her breathing gets much worse I am worried what will happen. This is such a delicate situation. Very scary.

-Kari
Posted 3/17/2017 12:32 AM (GMT 0)
Hi everyone - just a little update on my mom.

She has been taking the antibiotics now for about 5 days. She said today that her right arm feels as though it has now gotten weaker and she is having a lot of twitching in it, she has pain in the left arm, she has a soar throat, and also she noticed in PT that her left leg was weaker as well. Could this be signs of things starting to work? I'm so worried about her getting a lot worse. sad

-Kari
Posted 3/17/2017 12:39 AM (GMT 0)
It's signs that it's starting to hit something (that needs to be hit), and is the beginning of a herx reaction. Often it can take more than 3 days for enough die off toxins to start creating symptoms (herx), and that's why de-toxing and liver support can be so valuable. We don't want the symptoms she is now experiencing to escalate too much.

How often are you able to see her? We can suggest a simple de-tox bag you can take with you that she can enjoy while you're there.


Some people who heal say they never herxed, but most of us do no matter how careful we are. It is a sign that you are dealing with Lyme and possibly Babesia, a co-infection.

Post Edited (julymorning) : 3/16/2017 6:42:44 PM (GMT-6)

Posted 3/17/2017 12:41 AM (GMT 0)
Yes Kari - it sounds like she is herxing. The toxins from the die-off of bacteria are causing inflammation...increase in current symptoms....plus new ones can also occur.

Up to this...were her symptoms stable for awhile?


You may need to back off one of the meds she's taking...you don't want it to worsen even more.

But, is the nursing staff giving her the meds? Do you have any control over them?

If not, can you contact the Dr. and explain what's happening.
Posted 3/17/2017 12:43 AM (GMT 0)
I see her every day. During the week for an hour or so at night after work and then I stay with her Friday and Saturday nights. I definitely don't want things to get too much worse because I'm mostly worried about her breathing. She has been at a plateau for a few weeks now until this week, so I'm assuming it must be from the antibiotics.

-Kari
Posted 3/17/2017 12:45 AM (GMT 0)

KariW93 said...
I see her every day. During the week for an hour or so at night after work and then I stay with her Friday and Saturday nights. I definitely don't want things to get too much worse because I'm mostly worried about her breathing. She has been at a plateau for a few weeks now until this week, so I'm assuming it must be from the antibiotics.

-Kari

Yes, it sounds like it is.

If you tell the Dr. about this...if he's not lyme literate...he may end treatment altogether..
You're in a tough situation.
Posted 3/17/2017 12:47 AM (GMT 0)
I think you should give him a call and is it possible that your family members administer the antibiotics?

....or is that not allowed in a nursing home?

If not, maybe the Dr. could say to suspend treatment for a few days until she catches up to the toxin load.
Posted 3/17/2017 12:49 AM (GMT 0)
The doctor is a Lyme specialist-part of ILADS. But unfortunately he is 4 hours away. The nurses administer her the medicine according to the doctors orders. We will have to call the Lyme doctor to let him know and see what he says. Any suggestions on what we can do to maybe help this out a little other than lowering the medicine?
Posted 3/17/2017 12:51 AM (GMT 0)
Also, can the soar throat be a part of it?
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