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Sister has lost will to live, resisting food and drink

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Posted 6/5/2016 12:32 PM (GMT 0)
I already posted this on the "Scared Antibiotics Not Working" thread (so more details there), but thought I should probably start a new thread since that's not the topic anymore.

Anyway, the basic situation is that my sister's tinnitus, her worst Lyme symptom, became much worse after the trauma of the blood work (for her it was terrifying). It is now unbearable for her and the only place she gets relief is from being in the car with music.

She is basically living in the car and so are my 77-year-old mother and I--we both tag team and spend all day driving her. She's afraid to go in our home b/c the noise gets worse. We've tried everything, including putting head phones with music on her, but that hasn't worked. She's even terrified to go in the house for a few minutes to use the bathroom, so we now have a commode in the garage to make the process faster and shorten the distress. We used to have to give her tons of supplements to knock her out, so she could sleep in the home (she would have to flee as soon as she woke up b/c the noise was so loud), but now (for the past two nights) I'm sleeping with her in the car in the driveway with music. Her life has truly become miserable and the noise is unbearable.

We've tried all sorts of supplements for the tinnitus, but so far nothing has worked. I think it takes a long time for those to take effect, and my sister can no longer bear the noise. She tells us every day that she wants to die. Last week she asked my mother and I to kill her.

She's been resisting food and drink since 5/25. We've been struggling and begging her everyday. We thought we had a break through last Monday, when she finally had some chicken, jello, and an ice cream bar. But ever since, it's basically been no solid food. Everyday we have to beg her just to get some juice (loaded with nutrients and drops) and water in her. Yesterday, we were able to get 32 oz of fluid in her, but other days, it's been lower, like 26 and 29 oz. She sort of collapsed last week in the garage probably b/c she was dehydrated. She's completely resistant to taking pills and I have to beg her to get anything in her.

Ever since this started, my mother, father and I have been pleading with her to keep trying for a little longer and to give some of these remedies for the tinnitus a bit more time. It's so hard for her to commit b/c she finds the noise so unbearable. I can see the level of anguish and agony in her face when she cries (I feel like she's being tortured to death). I'm so terrified right now that I'm going to lose my baby sister. I don't want to see her suffer anymore, but I really believe that we could pull her out of this if we just get back to our old protocol and start getting some food and the supplements in her.

This morning when she woke up in the car with me the first thing she said was I want to die. I asked her if she wanted us to stop begging her, she said yes. For the first time ever, I gave her a half a valium to see if it could help her to stay calm (my mother said my grandmother had some issue with her ear from menniere's disease that she was on valium to help her cope with it). The half valium seems to have knocked her out. We were hoping it would just keep her loopy and maybe help her tolerate the noise. But I'm still afraid that the noise is so bad that there's nothing that can help her.

Anyway, this is where we are and I'm terrified that this is going to be the end for my baby sister.
Posted 6/5/2016 1:23 PM (GMT 0)
I am so sorry that things have gotten to this point. I am so sorry for the 3 of you.

Your sister is obviously dealing with some problem that has increased her tinnitus. Do you notice that this increase has corresponded with anything that could cause a herx reaction from bartonella?

K's bartonella herxes were mostly psychiatric and neurological. Increased light/sound sensitivities, raging etc. She was young, and anger and frustration (especially turned toward herself in the form of hitting herself) were perhaps her indicators of depression.

I, personally, experienced suicidal ideation and anxiety/panic while suffering from bartonella, and herxing was hard for me too. Just a thought that this may be the reason for your sister's loss of will to live and anxiety about entering the house, especially as you mention in your signature that you are treating bartonella.

I haven't read your other post, but above you mention antibiotics, while in your signature, herbs. It is hard to decrease dosages of abx, easier with herbs. Is she taking plenty of good multistrain probiotics between antimicrobial dosing? I know you say she won't eat, but you could try adding them to a smoothie with fruit (berries, bananas, whey if she tolerates it). Put some organic icecream in it if you have to.

Regular milk products are loaded with glyphosate (which the animals get from their feed) which will act as an antibiotic on her beneficial gut bacteria. It also chelates onto minerals and makes them biologically unavailable.

Before using natural chelation (diatomaceous earth and cilantro tincture), my tinnitus was very noticeable in certain areas of the house, especially those with high amounts of EMFs (kitchen, study with computer, corner of the basement with the breaker box). Metals in our tissues will act as small antennae, making RFs/EMFs more biologically active.

Having someone come in to inspect with an RF/EMF meter which highlighted these areas made me aware that EMF sensitivity is not just baloney as we are lead to believe - it is real. Switching out CFL bulbs and placing Stetzer filters along the problematic circuits, replacing DECT phones with wired and wiring/turning off computer WIFI led to an immediate resolution of tinnitus for me and EMF sensitivity within our home for both K and me. We also sleep better when the circuits are completely turned off in our bedrooms at night.

We still had problems in malls/museums/libraries etc. until we started natural chelation. Now we can withstand any number of hours in these places which before would cause palpitations (and thus resulting anxiety), increased motor ticcing and bone pain (from bartonella) and headache. If your sister reacts poorly inside the house she may be reacting to high areas of RFs/EMFs.

Red root helped me a lot with microcirculation and really cleared my brain fog. So I am postulating that if her tinnitus is a result of low blood flow to the inner ear because of inflammation, red root (low doses 5 drops 3x daily helped me) may help. WoodLand Essence has this tincture.

Several of the mom's on the ACN PANS/PANDAS forum find lemon balm to be helpful in reducing anxiety.
Posted 6/5/2016 1:49 PM (GMT 0)
After reading this more detailed post - your sister could be dealing with EMF sensitivities. I did for a while when I was really sick and couldn't use heating pads, electric blankets, microwaves, cell phones or computers without paying for it with increased pain. As Rowingmom said, it may be that the electronics in the house are increasing the tinnitus - or it could be chemical sensitivities that are increasing her tinnitus.

Keep trying. Your sister is obviously miserable and my heart goes out to her and you and your family. She doesn't understand that there's an end to all this and it doesn't have to be with her death - there's healing that can happen.

Be prepared to call a professional if the time comes. Please let us know if we can be of any help.
Posted 6/5/2016 1:50 PM (GMT 0)
Hi Laura,

My heart breaks for your sister, you as well as your Mom for going through all of this. I don't have any advice for you, I wish I did.

I don't know what your finances are but you have nothing to lose by calling Kara at the Hansa Clinic in Kansas at [email protected] and telling Kara what you told us. She will relate the information to Dr. Jernigan and he could tell you if he could help your sister. If any doctor knows about all diseases (not only lyme as he treats many diseases) including the tinnitus as well as Down Syndrome, he would know and if he didn't he would be honest and tell you so.

On a side note, my older sister suffers from tinnitus and uses a white noise machine which helps her but everyone is different.

I wish you the best,
Denise
Posted 6/5/2016 2:56 PM (GMT 0)
Laura, I don't know what to say, but just wanted you to know that your family is in my thoughts and prayers.
Posted 6/5/2016 3:12 PM (GMT 0)
Oh my goodness, as I was reading your post I just kept thinking what a wonderful family you have....you obviously love each other very much and I'm so sorry you are having to go through this. I will send prayers for your sister to get some relief and your family to have strength. Bartonella can hit very hard and make you want to be GONE, I sympathize with your sister on that count....add in the noise and I'm sure it's unbearable.

My first thought also when reading your post was also the EMF's....would you be able to turn off the electricity to the house for a few hours and see if that offers your sister any relief to maybe go in the house? I've also personally wondered if like a rubberized suit would help folks with EMF sensitivity? It sounds stupid but could you wrap a bath rug or something rubberized around her shoulders/head area for a bit and see if that does anything at all for her? I don't suffer from this symptom, so I can't give you any advice but I know of others that are just miserable because of it....in our world these days the EMF's are all over the place. Can you maybe drive her out of town a bit away from everything that may be bothering her and see if that helps her at all?

I hope that somehow you can find some kind of relief for your sister.

Jenny
Posted 6/5/2016 3:49 PM (GMT 0)
Laura, I am so sorry that she has to go through this. I feel so bad for you as well. You must feel so helpless. My heart and prayers are with you.

Denise K
Posted 6/5/2016 5:16 PM (GMT 0)
Laura -

I'm so, so sorry things aren't improving. It was wise of you to give her system a break with the valium. You probably already know this - but if she doesn't eat and drink soon, you're going to need to take her to the clinic/hospital. It might be necessary to give her enough valium to fall asleep in order to do this, get an IV and fluids in her and maybe/hopefully get her back into the car before too much time passes? I don't know.

But I'd start thinking of a plan (and call the clinic in advance to tell them you're coming, explain about her, ask for someone experienced with Down's, give them CLEAR directions about what they are not authorized to do/administer, etc.) The last thing you want is dehydration to get any worse.

Hang in there - she is in good hands, you just need to get her past this awful stage so her body can continue to recover. Please, please continue posting and let us know if there is anything else we can do to help.

-p

Post Edited (Pirouette) : 6/5/2016 11:20:00 AM (GMT-6)

Posted 6/5/2016 5:18 PM (GMT 0)
So sorry, Laura. My heart goes out to you. What wonderful support your sister has..

I think as others have stated - it could be EMF's. Maybe just do a trial of shutting it all off..and see how she feels.
Then you will know if that is causing it.
Posted 6/5/2016 5:37 PM (GMT 0)
There are a lot of anti-emf clothing items.

Probably just a nice head scarf would be worth a test.

www.lessemf.com/personal.html
Posted 6/5/2016 5:48 PM (GMT 0)
Omg praying for you...the zith has made my tinnitus worse i feel it is bart...is there a family trailer you can set up front.. ? It maybe the trama associstion ..i live in that prison too..can you set up a rife in the garage. .garlic oil with mullein ear drops ..1 drop seems to help.. they make ozone ear sufflatuon tubes also...
Today i fast too i am on strike...what is the options ,suffering ,commiting to hospital and she will distrust resent further or long walk in the woods...if you knock her out and she wakes with tpn she may rip iv out ...so please be careful pray and keep praying
Posted 6/5/2016 6:09 PM (GMT 0)
I was wondering if she would sleep somewhere else? I feel like my tinnitus is worse at my house too. For the longest time I thought it was an electrical hum. I feel so bad for her. I will keep her in my prayers.
Posted 6/5/2016 6:45 PM (GMT 0)
Would noise cancellation headphones help at all?

I heard recently from a lady, also INCREDIBLY sensitive to emfs (everyone around her had to power off their cell phones, as she would painfully moan when someone around had one on). This person had to proof her home. This included her mattress frame--something I sure wouldn't have thought of! She said that the metal frame also added to the EMFS.

I am wondering if you've just not found the right treatment combo. Has this been changed up & I take it you have a good LLMD? So sorry for your sister & family. (((hugs)))
Posted 6/6/2016 12:17 PM (GMT 0)
Oh, dear. I'm so sorry that you, your sister, and your family are going through this. I know I get tinnitus and headaches when my toxin load is high; although, mine is obviously not as bad as your sister's. There are a few things that have helped me lessen the neurotoxins... Cognease Detox, which is a supplement from Beyond Balance. If you don't have access to Beyond Balance supplements, check into the Jernigan anti-tox formulas. Alka Seltzer Gold. Melatonin at bedtime - I read somewhere that it increases glutathione in the brain, and I seem to have less tinnitus and fewer migraines when I take it. Also, Hu-mana-tea from https://www.humaworm.com/hu-mana-tea-detox-tea.html , which is similar to essiac tea. Prayers for your whole family.
Posted 6/7/2016 3:45 AM (GMT 0)
I second the emf's and metals making it worse.

She could also be more sound sensitive to higher sounds, electronics produce all kinds of sounds we can't normally hear that are very high pitched.
The TV, especially older ones, produce a very high pitched sound. When my tinnitus was more prominent the TV would drive me crazy. The high pitched sound it produces made everything worse.

I'm sure this is true of many electronics.

I would also like to second calling the Hansa Center, it made the biggest difference in my treatment than anything else before.
They would be able to test and find if it was EMF/cellphone radiation, metals, environmental toxins(pesticides is big), or food allergies possibly causing an autoimmune attack in the ear.

Does your sister by any chance chew a lot of gum? Aspartame is known to cause tinnitus and other head related issues, gum is usually the big culprit.
Posted 6/7/2016 11:57 PM (GMT 0)
Hello, LauraJK
I'm so sorry your sister and your family are struggling with this; I know from experience with my son that some days, weeks, months seem like a neverending twilight zone that you are trying to navigate through on so little sleep.

My humble suggestion is to create at least one living space for your sister (which would be more comfortable than the car) that is EMF free and can have the lighting and sound levels he's comfortable with. For two years (between homes) we lived in an apartment where my son (since diagnosed with lyme) became increasingly sensitive to every area of the apartment - except the kitchen. He'd close himself into the kitchen and say it was the only place he felt calm and he specifically kept stating that electronics were creating a ringing sound that he could here. I couldn't hear anything. I didn't know much (anything) about EMF before this and eventually had an EMF specialist in to test our EMF levels. From him we learned every area of the apartment was "through the roof" in readings (at 50+ x acceptable) - except the kitchen (at 3 - 3x acceptable). We walked from the apartment to the property mgmt office and immediately on exiting our unit the readings fell to and stayed at 1 or less (acceptable). We learned our unit was directly above the building electrical supply room; we moved out later that week.

I learned from that expert how to get all living spaces in our new home down below 1 -- and we have several rooms (one where he sleeps, one where he is predominantly during the day) that we have made EMF negligible or free. We also don't have a television in our home, had old satellite dishes removed, etc. - with a plug-in phone and internet (with no wifi) being our only real modern electronics. It makes a massive difference in my son's ability to achieve calm (at times - grin) and sleep. Once we moved, I also lost this feeling I had had (but attributed to overwork) of almost being "charged" when I slept at night -- it's crazy when I think of what was hitting us. I bought a high-quality EMF device (at approx. $200) which has been exceedingly valuable to me to understand where higher areas are in the house / a room and how to lower them or place furniture so people aren't hanging out where emf registers. Also, one can discover that in some homes "electricians" have done strange things with the wiring that can introduce high EMF areas where there aren't even any electrical outlets. We were able to (as could a good electrician) locate such areas in our current home and get improper wiring corrected by a professional.

I find that as my son's treatment progresses, his tolerance for light, sound, and electronics improves...so I'm hopeful that we'll get back to "societal norms" sometime in the future. [Although we'll likely never go back to Wi-Fi, etc. if we can help it].

I hope that you can find ways to keep your and your sister's strength up to get through the treatment months and years. My thoughts are with you and your family.
Posted 6/8/2016 12:24 AM (GMT 0)
LymeMother - Could you share a link or the brand of the emf device? I have been looking for one and have been unsure what to buy and if it would actually work. Thanks so much for the informative post!
Posted 6/8/2016 1:37 AM (GMT 0)
tinnitus often is dental cavitation-docs check everything but the jaw.
A biological dds should be able to check you for this
Just guessing but look hard at the wisdom tooth space
Posted 6/8/2016 1:56 AM (GMT 0)
Wow, I am so sorry to hear that you guys are going through this. I wish I had words of wisdom, but unfortunately I know nothing about tinnitus. But I am very happy that you posted about the situation on this forum because there are countless knowledgeable folks on here that can help.

Sending your family thoughts and prayers.
Posted 6/8/2016 2:20 AM (GMT 0)
LymeMother - wow -amazing progress. So glad you found a solution - thanks for sharing it!! You probably have no idea how many people you've probably helped!

-p
Posted 6/8/2016 2:32 AM (GMT 0)
I remember having
sound sensivity so bad I
had the tv sound on 4
normally it would be
at 12,
very hard to
deal

As I read these posts I'm
realizing I have no
Tinnitus at all
bc I've gotten rid
of the root
cause, infections

=]chloe
Posted 6/8/2016 2:43 AM (GMT 0)
www.emfcenter.com/metrsale.htm

you can even rent the emf testing devices by mail at this place.
Posted 6/8/2016 5:12 AM (GMT 0)
so sorry for your family's anguish - sending prayers and helpful intentions
Posted 6/11/2016 2:07 AM (GMT 0)
Hello, K07
In answer to your question on brand, here is the detail on what I purchased:
- The main product I bought is this:
TriField AC (Gauss) Meter Model 100XE
[ http://store.emfsolutions.ca/trifield-gauss-meter-model-100xe/?src=prn#ProductTabs ]
It's hand-held and you just walk around all areas of your home with it.

-At the same time, I also bought this:
Graham-Stetzer Microsurge Meter (to measure Dirty Electricity)
[ http://store.emfsolutions.ca/graham-stetzer-microsurge-meter/?src=prn#ProductTabs ]
It has a very focused purpose, where you systematically plug it into every outlet in your home and can determine those where something in the wiring is creating excessive electrical surges to come from the plug. Electricians can then address / fix.
Posted 6/11/2016 2:22 AM (GMT 0)
These other posters probably have more experience re lyme's etc treatment but I wanted to throw in I looked up tinnutis and B12 deficiency came up all over the net which I am certain you have already tried to address, but wanted to let you know I wasn't absorbing even the methyl form of b12 and still having different but disturbing symptoms -seizure like shaking etc. Extreme anxiety -very bad stress couldn't handle anything even with the sublingual form.

Then I found b12 dibencozide form which is also sublingual but different form and i can absorb this and voila anxiety, violent shaking etc all gone. Anyway if she hasn't tried this form of b12 might be worth a shot as tinnitus appears to be one of the prominent symptoms. I do hope something helps and you all will be in my prayers.
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