Has anyone had one or two Lyme bands and symptoms but not had Lyme disease?

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cakegirl
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   Posted 1/12/2018 12:50 PM (GMT -6)   
Just wondering if there is anyone that we know of that had one or two bands of Lyme and symptoms but who didn't have Lyme disease?

BabsBunny
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   Posted 1/12/2018 1:25 PM (GMT -6)   
I would say as long as there are symptoms and positive bands, it would be as hard to prove you DON’T have lyme as it is to prove you DO.

Given the insufficient testing, false negatives, and clinical diagnosis, I’m not sure anyone could say they certainly don’t have lyme.

Unless the question is “Did those symptoms go away with treatment for a different diagnosis?” Maybe that would be the best indicator of it not being Lyme, but you wouldn’t know til you treat.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

cakegirl
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   Posted 1/12/2018 1:27 PM (GMT -6)   
Thanks Babsbunny.

The only other diagnosis we have is the generic diagnosis for everyone with memory loss: dementia.

Girlie
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   Posted 1/12/2018 2:02 PM (GMT -6)   
cakegirl said...
Thanks Babsbunny.

The only other diagnosis we have is the generic diagnosis for everyone with memory loss: dementia.


Have you seen a LLMD? And is he/she questioning it?

If you have symptoms (obviously you do - because you proceeded to test) plus lyme specific bands...then I wouldn't question it.


Also, with treatment...most of us herx after starting it. That supports the diagnosis.

my first antibiotic was doxycycline...Day 4 I herxed.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 2:12 PM (GMT -6)   
She's seen LLMD and herbalist. Neither is convinced of Lyme but both are willing treat as Lyme.

Yes, she has one Lyme specific band that appeared twice in two Western Blots done six months apart. And about 17 years of various symptoms. It was a regular doctor who tested her for Lyme initially. But he wouldn't do much b/c it wasn't CDC positive but did try to send her to infectious disease, but I knew that was pointless.

She is very sensitive and has reactions to almost every herb so I don't think it's reliable enough to know whether it was a herx or whether she was just sensitive to it. I just don't know.

goshawk
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   Posted 1/12/2018 2:20 PM (GMT -6)   
If your using herbal tinctures just back down the dose and see if she can tolerate it. Don't go too fast with each herbal , its good to start slow and with low doses and then gradually build up.


It could be that she has a high bacteria load and the herbals are doing their job killing the infections. Thus more reactions/herxing.

Also ammonia can build up in the brain so something like Jernigans Anti neuro tox II is good for that.

Is she detoxing...taking Epsom salt baths with warm not hot water for around 10 minutes to start.

Have her drink lemon juice in her water all day.

Binders are important Activated charcoal, zeolite to name a few. Just always take 2 hours away from meds. herbals.

If get have some time post what her symptoms are and what treatments you are using.


It's so very kind that you are helping her.


Take care, Jo

cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 2:29 PM (GMT -6)   
Hey goshawk.

We tried various forms of detoxing for many months. None had any effect and most just caused reactions. She takes charcoal without issue.

Her regular symptoms are short term memory loss, cognition issues, word finding, confusion, concentration, lack of stamina, under-active thyroid. She has had other symptoms. But it's the memory loss that has gotten progressively worse over 17 years to the point that she can't do much on her own.

We started using bidens in November. We worked up to ten drops or so before I realized it was causing a huge surge in symptoms. The symptoms went away when we stopped it. Then I started her back at various times and it didn't go well. I gave her one drop recently and she reacted badly to it for two days.

Bidens is the only herb for Lyme we've been using. We've tried herbal teas for memory but she reacted badly to them even at really low doses. She is very sensitive so it's hard to know whether the herb is just too strong for her or if it's potentially affecting Lyme.

k07
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   Posted 1/12/2018 2:55 PM (GMT -6)   
cakegirl - It could be so many things with the memory loss....Has she ever tried liposomal glutathione? It seemed to help me with some of my cognitive stuff. Being sensitive, I know it is scary to try stuff. I do believe glutathione can be compounded for topical application too. I can't attest to it though since I've only taken liposomal.

Post Edited (k07) : 1/12/2018 3:08:47 PM (GMT-7)


cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 3:02 PM (GMT -6)   
k07, no, we never tried it...

k07
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   Posted 1/12/2018 4:18 PM (GMT -6)   
In regards to your original question, what were the two bands?

Does she have amalgams? Ever been tested for things like heavy metals, mold, parasites?

I wish Kris Kristofferson would talk more about what kind of treatment he did for lyme disease that reversed his alzheimer's.

cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 4:24 PM (GMT -6)   
Bands 39 and 41.

Yes, she has amalgams. But from what I understand you can't attempt to remove mercury with them still in. Several folks advised me that attempting to remove amalgams when she's already in bad shape could make things even worse.

Someone used "muscle testing" to proclaim that her problem was mercury. No, mold or parasite testing.

k07
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Date Joined Sep 2015
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   Posted 1/12/2018 5:42 PM (GMT -6)   
Yes, I would not chelate with mercury fillings. If you research mercury toxicity, decreased cognitive functions is listed. It could be why she is so sensitive to treatment.

As you know I'm sure, band 39 is very lyme specific.

goshawk
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Date Joined Sep 2016
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   Posted 1/12/2018 6:06 PM (GMT -6)   
Hi Cakegirl, Thanks for posting her symptoms and herbals you have tried.

So I looked back at your posts and read that she has seen an llmd and a herbalist.

Have they been treating her for the Lyme for a while?

Buhner has a Neuroborreliosis protocol , not sure if you are familiar with it. It might be something to consider talking to your herbalist/llmd about.

It can be helpful for Neuro Lyme.

One of the most important tinctures in it is; Uncaria rhynchophylla, buhner states that it is crucial to add to the core protocol.

You also might want to consider seeing Dr J in D.C. , Dr E . F. in NYC or going to the Hansa Center, especially since she has had this for so long and it has taken her memory.

I truly wish I could help more, I will keep you and your family in my thoughts and prayers and remember to also take care of yourself.

Sincerely, Jo





Im sorry to ask so many questions, I'm just hoping some members see the information and might be able to offer some solutions.

Girlie
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   Posted 1/12/2018 6:47 PM (GMT -6)   
k07 said...
In regards to your original question, what were the two bands?

Does she have amalgams? Ever been tested for things like heavy metals, mold, parasites?

I wish Kris Kristofferson would talk more about what kind of treatment he did for lyme disease that reversed his alzheimer's.


Re: Kris Kristofferson (from an article in 2016)

Well, we got the news when we were on tour in the UK and Ireland, so immediately upon landing in the US, I went to a local pharmacy and picked up Kris’s prescriptions for Doxycycline and Alinia. Soon after, we also started Hyperbaric Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe.

At this point, did anyone refer you to a Lyme-Literate doctor?
Yes, luckily, Kris’s cardiologist did her residency in New Jersey so she understood the cardiac involvement in Lyme and said go to a Lyme specialist. We began working with Dr. Steve Harris in California, who added antibiotic intramuscular injections to Kris’s protocol and is continuing to treat Kris.



/www.huffingtonpost.com/entry/a-slow-slipping-away-kris-kristoffersons-long_us_577c047be4b00a3ae4ce6609
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 6:52 PM (GMT -6)   
We briefly tried japanese knotweed as the LLMD recommended but it was way too strong. He seemed inexperienced. Since then I follow what the herbalist suggests b/c she has twenty years experience.

We've only been trying the antibiotic herb since November.

She was never sensitive to any herbs or supplements until we used l-methylfolate and till a muscle testing nurse put her on homeopathic heavy metal removal tinctures. The tinctures did not go well and either one or both of these products has made her totally sensitive to almost everything. She can't even take Naturethoid without a reaction.

k07
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   Posted 1/12/2018 7:27 PM (GMT -6)   
There’s definitely something there with her methylation. I am no expert, but i wonder if the methylfolate caused a release of metals causing her symptoms.

cakegirl
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Date Joined Nov 2016
Total Posts : 254
   Posted 1/12/2018 8:18 PM (GMT -6)   
The methylfolate definitely stirred something up. I regret ever using it because now it's impossible to use almost any supplement or herb on a regular basis. She stopped taking it over six months ago and the sensitivity has never improved.

k07
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Date Joined Sep 2015
Total Posts : 2502
   Posted 1/13/2018 10:31 AM (GMT -6)   
You would think a doctor could give some direction on this. Maybe consult a genetics person like Ben Lynch or Bob Miller (tree of life). The latter I have done and the price is reasonable.
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