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» LymeNet Flash » Questions and Discussion » General Support » Seeking perspective -- and encouragement

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Author Topic: Seeking perspective -- and encouragement
CD57
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My neuropathies have increased and are getting really bad. I am also dealing with a sensation of almost like fingernails scraping a chalkboard inside my legs, and have developed severe restless legs. It's obvious that things are just progressing with me, despite treatment,

It's bart, it always has been, and it isn't even touched by the meds I've tried. It used to be controlled by these meds but now they don't even touch them.

Inflammation in the CNS. I'm on Buhner herbs and high dose turmeric and NOTHING helps me at all.

I am so tired of researching stuff and brining it to my LLMD who doesn't know what to do for me. He says my immune system does not see the infections or help out trying to control or kill them, but knows something's wrong (thus the out of control symptoms). All neurological.

How do I stop this downward spiral? My thoughts are terrible. At this point if I could just stop the spiral with low dose pulsed abx for the rest of my life I would do that, but even those seem to stop working.

7 yrs oral and IV abx, ozone, tried Rife, herbs, homeopathics, German Biological medicine, MMS....NOTHING.

Cannabis juice? mHBOT?

[ 08-13-2013, 09:45 PM: Message edited by: Robin123 ]

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CD57
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By the way I have two little kids and can't really see me in their future which scares me.

I look healthy, have energy weirdly...just have massive CNS inflammation and the bugs don't die when I take meds or herbs. IS this even POSSIBLE?

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dbpei
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So sorry CD57. I wish I could make some suggestions. It looks like you have tried everything. Have you been following Parasite Warriors thread? Maybe that is your missing piece. Salt C alone might be a place to start.

Thinking of you and sending prayers your way.

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desertwind
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It does sound like you have tried everything. Seven years is a long time. I am at the 8 year mark and have switched over to treating yeast and parasites with meds and herbs.

I am having pretty good results and neuro stuff is way better. Have you focused on yeast and/or parasites? Just a thought.,,,

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map1131
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Cd, I had a long list of rife freqs for bart that did nothing for me until I started using 832 and 357 only.

I worked myself up to 10 minutes each session. Some believe you need to hit bart everyday. No way Jose for me. I'm not a good detoxer so I take things much easier on myself. Once a week or 2 weeks.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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GretaM
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CD57-I am sorry that things are getting worse for you.

Maybe it's time for a different LLMD-one with fresh ideas.

Will something like gabapentin be helpful for the neuralgia?

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CD57
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I have never treated yeast or parasites. Nope, not really. Should I try that?
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dbpei
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Definitely look into treating both of those! At the most recent ILADS conference in Boston, parasites were noted as being one of the biggest barriers to people with Lyme and tick born illness getting well. Try reading the Parasite Warriors thread from the beginning. It is long, but will guide you.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/122300

Yeast can also be a big problem for many with lyme, especially if you took long term ABX. Both could be playing a part. I know there are many meds, herbs and supplements to treat. Byron White has a formula and Buhner has many herbs he recommends for this.

You will find lots about this on lymenet. Good luck!

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Robin123
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Sorry to hear you're going through all this -

If you say it's your immune system, what about the idea of trying to build it up some more?

For example, my doc told me to take Host Defense - it's a combo of 17 mushrooms. Mushroom can help the immune system get stronger.

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lax mom
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How is your sleep?

Also, what about viruses? My former Dr K trained ART practitioner told me that viruses nibble away at the myelin.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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DaveNJ
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CD57,

sorry for your suffering especially for the feeling of being at the end of yoru rope. i have been there many times and even quite recently.

not sure if you have followed any of my posts this year but i got fed up with chaisng ghosts and never getting over the hump although i was better but not well by any stretch and than whammo real went into the toilet in january.

decided i needed a more focused approach and went and found a doctor who does ART(autonomic response testing). i can't say i was optimistic about it...especilaly because it seems like hocus pocus.

long story short...one visiyt found metal issues, KPU(am major issue) and Babesia(also major issue(.

the leg things you describe are not unlike some of my symptoms...and i never thought in 7 years or beingf sick i had babesia.

anyway...i am making big strides now...keeping looking under ever stone...and find a doctor who will help you do that...

Dave

--------------------
On my journey to wellness - One day at a time.

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sutherngrl
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Don't let yourself get too discouraged. Try to stay positive, because I have learned lately that positive thoughts really make a difference in how we deal with all of this.

I've dealt with Lyme for over 7 years. I've been off antibiotics for 10 months. I am so much better, but I know that there is still something else there that I need to deal with. I've been going to cognitive therapy and it has really helped me in the way that I think.

Like Dave said, "keep looking under every stone". And in the mean time focus on thinking good thoughts Know that you WILL get better. Only tell yourself things that are positive. This will help you deal with all of this better.

I do know how you feel. I went through the most horrible depression and anxiety, and wished I would die. After the Lyme started to get better, I developed a severe DVT(blood clot). It was huge and scary and pushed me over the edge. Like the straw that broke the camels back. I can't even describe all that I went through.

But.....unbelievably I have moved forward. I have overcome some of my fears just by learning to replace negative thoughts with positive ones.

I don't know if everyone can return to completely being normal after having Lyme, but I do know you can get much better and live a much more normal life. There will be ups and downs while getting there but I believe you will get there.

Sorry, I just realized how long winded I have been. I will be thinking of you and sending positive thoughts your way.

SG

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glm1111
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Agree TOTALLY with others. TREAT PARASITES!!!!!! Read the PARASITE WARRIORS SUPPORT THREAD. It has been the missing link for many.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Ellen101
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Have you looked into food allergies/sensitivities or done ART, autonomic response testing? At this point it maybe time to try something totally different and look beyond Lyme for other issue. Lyme may still be present, but you may have other issues that are keeping you from getting well.
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birdie67
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If you decide to try ART, I can give you the name of someone who does it. I believe we may both live in Nor Cal.

Have you tried LDN? I know it has been a big help for some.

I am seeing him this Sunday.

Thinking of you.

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micul
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Weren't you going to IV's ? Did you change your mind, or is that not working either?

--------------------
You're only a failure when you stop trying.

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Anissahope4healing
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I agree with the others.

Please treat parasites. My son's Igenex test came back positive for Babesia Duncani, but so many are positive and don't get a Babesia positive or any type of parasite show up.

They can and will play such havoc on your body. And what you describe is similar to my son's. I don't see Dr. H, but he has a recent YouTube vide, like within the last a couple years,

specifically on treating Babesia and how difficult it is and how he had to combine treatments, and in the end after traveling and learning from other countries implemented cryptolepsis (spelling?)- but it was the missing piece to his patient sufferring after many many many years.

And the medical profession seem to agree that the majority of our "health" comes from what is in our gut, so if we have an over growth of candida", "bad bacteria", etc, it affects everything.. immune system, serotonin, norepinephrine, the whole gamut...I never knew that until just a few months ago.

Google Candida and symptoms, and also parasites..I believe the others have great links already posted above.

You will get to feeling better. I am so sorry you have been suffering for so long. I pray that either parasites, candida, heavy metals (hopefully not all three) [Smile] but are one of the causes and can free you from your pain.

I am a Mommy too and can undertand. Your children need you and you are doing everything you can to find the answers. We are here to support you. You are doing an incredible job during such a difficult time. As what has been said before, "Don't leave any stone unturned". [group hug]

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CD57
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thanks so much I will keep referring back to this. I have reently developed explosive I want to die headaches at the front and top of head and base of skull with a tomahawk through my eyes. They show up every day at the same time.

Birdie, could you PM the name of the ART practitiner? I am skeptical because I spent a lot on one already who was of no help (or maybe its just that I didnt respond to the treatments).

I've been on cryptolepsis for months, tried a three week course of Alinia with malarone, pulsed Mepron with Zith and Clindy 3 days a week for 3 months with another practitioner.....not sure I have babesia but could be parasites certainly.

I have all the ingredients for the Dr K parasite protocol in my cupboard but am scared to do it.

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Maya12
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Hey cd I used to have horrible headaches / head pressure and recently when this flares and then I have a chelation it is fine. I now use this as a gauge as to when I need a chelation

And I really think the suggestions of metals, kpu , candida and parasites are great ones

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Maya12
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The metals also really reak havoc on me neurologically and really affect me mentally causing a sense of disconnect and dp, dr
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Maya12
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How do you know the bugs aren't dying?

I do live cell every month to see what is going on and this does help with the direction of treatment or at least let's you know what's going on

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dbpei
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Maya, what do you use when chelating?
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Maya12
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I do Iv chelations of EDTA
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