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» LymeNet Flash » Questions and Discussion » Medical Questions » Need help with treatment ideas/decisions

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Author Topic: Need help with treatment ideas/decisions
momof10
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Hello,

I have a 14 year old daughter with Lyme, Bartonella, Strep (PANDAS-Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), and POTS (Postural Orthostatic Tachycardia).

The PANDAS/Lyme has caused severe psychological symptoms: Depression/OCD/anxiety/mood swings.

She also has fairly severe cognitive issues from the Lyme that prevent her from processing written and auditory information properly.

She was started on MC-BAB-2 (an herbal antimicrobial) and her symptoms ramped up incredibly, including low fevers, swollen glands, and more severe psychiatric symptoms.

We think it may have been due to herxing, and our LLMD took her off the MC-BAB for now.

I am wondering how she will ever get better if we can’t even use herbal antimicrobials on her without severe response?!?

This is so frustrating. We just want her better! Right now, she is basically non-functional due to all the psychological/cognitive symptoms.

She has done no school work since January, and I can’t see her being able to start for a long time. Her LLMD does not want to put her on antibiotics anytime soon due to her sensitivity to herxing.

I am wondering if we should press ahead with antibiotics anyway, knowing she will herx. The symptom uptick on the MC-BAB-2 was scary though, especially the suicidal ideations and auditory hallucinations.

I wish there were a way to hospitalize her to keep her safe while she gets her antibiotics. She has problems detoxing also because she is chronically dehydrated due to lack of desire to drink.

She feels full all the time no matter when/how much she has eaten, and can’t put very much in her stomach at once. She was so dehydrated last fall that they put two bags of IV fluid in her, and she still had a hard time peeing!

She has never been on antibiotics for any of her current illnesses (Lyme/Bart./Strep), and I am concerned that the longer we wait to start therapy, the harder it will be for her to get better, and the more damage will be done.

Does anyone have any ideas, or thoughts that might help? Thank you!

Posts: 4 | From Jeffersonton, VA | Registered: Feb 2017  |  IP: Logged | Report this post to a Moderator
HW88
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Hey Mama, Hang in there. Lyme is a tough and slow journey. We all want it to be over NOW. Unfortunately it's a marathon, not a sprint. I'm assuming you have a good LLMD?

I wanted to give you a little hope. I was similar to your daughter. psychological issues, stomach issues (I could only eat a few foods).

The first antibiotic I was put on, I herxed sooo hard I no longer thought it was possible to get better.

I thought the same thing, "If I can't even take medicine, how will I get better?" I also wished I had a hospital to go to, in order to have treatment because I reacted so badly, I couldn't even walk into my next appointment by myself.

I've tried that same antibiotic later on in the treatment and I still had a bad reaction to it. Although I've never done herbs and only antibiotics, I assume it's similar that some things don't work well with out bodies.

I have always had to start out really low on my dose and work my way up. My body is super sensitive and I'm a baby when it comes to herxes.

HOWEVER, I have definitely improved over the last 8 months. I'm not 100% and I still struggle each day, but NOTHING like it was a year ago. Progress will come. SLOWLY, but it will come.

There is a big thread on detoxing somewhere on this site. Look for it and try to get her detoxing.

Kill, detox, rebuild.

Also, many on this site got better in other ways than antibiotics. Hopefully they will share.

From one mother to another, sending lots of hugs tonight for you and your daughter.

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
MannaMe
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Can you rife her? That way you can kill the bugs without adding extra toxins to her system.

Work on detoxing before starting more treatment. Getting too toxic sent my hubby to the hospital with high blood pressure in the stroke levels.

He's another one who has to start out very slow with anything new to see how he tolerates it.

Posts: 1528 | From USA | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
ilovedogs
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Hi
I am so sorry your family is going through this.

I want you to know that I had very similar symptoms and responses to meds and I am 90 percent better! Some days back to normal!!!!

Herxing is just awful. I treated initially with antibiotics then switched to byron white herbs. You will find what works for her and she WILL get well.

I always wished for a hospital or place to go to for treatment also.

I know these diseases can make us feel helpless/hopeless. But I want to tell you there is hope. I never thought I would get better.

Hugs to you and your family

Posts: 88 | From new england | Registered: Oct 2016  |  IP: Logged | Report this post to a Moderator
Brussels
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Don't put ALL your faith in antibiotics, that is what I would say.

They are not BETTER than herbs or homeopathics just because they are chemical.

It's a false belief that chemicals are better than other types of treatments, more efficient, faster etc. No, not true, in my opinion.


Have in mind that antibiotics will probably ruin her good gut microbes, diminishing her ability to take in nutrients, supplements, and even more drugs or herbs.

And after many years of antibiotics, many too many people are still ill. In spite of dozens of cocktails of drugs for months, years, some people treat with drugs for more than a decade!

So, nope, I would take off the HOPE that antibiotics will heal BETTER than herbs.

Antibiotics are JUST another way to deal with lyme, but in no way, they are the best way to deal with it.


I had a 2 year old many times reinfected, and what causes those rise in symptoms AFTER ingestion of ANY killer were die-off TOXINS.

If you don't bind these toxins out, supporting liver, kidney, lymph, gut, the person MAY get sicker, like my daughter and I.

Only after binding toxins and supporting all detox organs, we felt improvement. We are lyme free for the last 8 years.


No matter WHICH anti microbial she uses, if her body cannot detox well (like many of us with lyme), she needs EXTENSIVE SUPPORT in detox.


The central part of the problem is not LACK OF EFFICIENT anti microbials, but LACK OF BINDERS and cleansing supplements, herbs, protocols.

If you add antibiotics without binders, expect an even worse panel: drugs are toxic IN THEMSELVES, so the body will have a DOUBLE charge to put toxins off: from drugs themselves + from die-off toxins.

And on top, antibiotics will contribute to mess her gut microbes, which are the most important helpers in fighting all sorts of chronic infections.

It's an illusion that a couple of probiotics can fill in the damage long term antibiotics do to the gut flora.


I don't say not to do antibiotics, but just do not think that antibiotics are THE BEST answer for lyme.

Without binders and cleaning supplements, antibiotics are even worse than herbs due to side effects, increased toxic load and because they help to lower immunity.

----------------

I see the list of herbs in MC BAB 2: the combination looks strong enough to cause those herxes, as it's got cats claw and stevia, both are known to deal with Borrelia.

I myself had trouble with cats claw alone, and had to build drop by drop, so that my body could take these potent herbal killers.

If I had taken this product at full dosage, I would expect to have collapsed, with all sorts of symptoms.

Also, do not trust that the hospital will take her in charge well. Unless you are lucky and found a good institution.

Posts: 6181 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
HW88
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I agree with brussels and all others.

I don't use binders all the time, but when I have a mental herx, they work. I use chlorella and when the mental health flares, it takes off the edge.

Toxins in the brain make me crazy!

How is she doing today?

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
Phoiph
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momof10~

My symptoms were similar to your daughter's. I am always so sorry to hear of a young person having to go through this. It is difficult enough as an adult.

I truly hope you will read the mild hyperbaric thread in its entirety. I am 100% well now thanks to this therapy.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125201?

Let me know if I can be of help.

Posts: 1489 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
TF
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My suggestion is that you take her to the #2 lyme doctor in the eastern U.S., located in Washington, D.C. She just reopened her practice to new patients after 2 1/2 years of not taking new people.

This doc treats children and adults and is successfully treating a 4 year old who was born with lyme and cos. (She started treating him at age 3. He was in bad shape.)

She is giving him the meds and dosages he can tolerate. I would trust my child to this woman. This is such a fabulous opportunity to get in with a top notch lyme and Morgellons specialist.

If you would like to take advantage of this, let me know and I will send you her name and how she treats and some patient reports including the one where she is going as slow as possible and getting the little boy born with lyme well. The mom is so happy about this! They are going VERY slowly.

This lady is an expert! And, you only have to appear in person once every 6 months, so that is not much travel at all.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
   

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