Sister has lost will to live, resisting food and drink

Sorry I haven't checked in since my last post---I've been on duty 24/7 and am simply exhausted. I greatly appreciate all the support and helpful suggestions.

I don't have time to address all the points everyone made, but I will quickly say that early on in this nightmare we shielded a couple of rooms in our home. I honestly think EMFs made a difference in the beginning (within a month of our next door neighbor's new powerful WIFI router, my sister's symptoms, that we now know were Lyme, exploded exponentially--they went from being an annoyance to torturous and things have never been the same since), but now it doesn't seem to make a difference I kind of think Klinghardt might be right about the EMFs making pathogens like Lyme more aggressive.

And on the B12 issue, my sister was tested and is okay--we give her hydroxyB12 and methylB12.

Anyway, I just wanted to leave a quick update as to where things stand. We basically spent about 44 days total living 24/7 in the car, with my mother and I (and sometimes my father) taking turns driving and parking with my sister, and with me sleeping with her in the car in the driveway. Every day we pleaded with her to drink detox waters (Pinella and Burbur) and OJ (loaded with liquid CoQ-10/Acetyl L-Carnitine, Glycine, Lysine, Inositol, D-Ribose and some of Buhner's herbs) and we begged her to have yogurt and some vitamins/supplements to down-regulate the NO-ONOO chemistry. Somehow she was able to survive on such minimal intake, probably due to a slow metabolism, though she has definitely lost some weight.

At some point, I added Red Sage and Chinese Skullcap to the OJ and it seemed to make a difference in her symptoms. In late June, while still in the car, we started to have times when all the noise, tinnitus, and vibrations in her body turned off. Unfortunately, instead of being happy about this, my sister was actually terrified and would start crying, complaining that her body is "dead" because she can't feel anything or hear anything (I think the change was too sudden and dramatic for her--she didn't know what was happening and had gotten so used to having a noisy, vibrating body).

We ended up moving back into the house on 7/5 because the heat was unbearable and it was no longer possible to sleep in the car in the driveway (weather-wise we were lucky until then, and my sister and I could sleep in the car b/c it cooled down at night).

Anyway, on the first night back in the house, my sister had a 2 hour panic attack (fyi- these panic attacks started happening in the car too--she often woke up hysterical and panicked), but was able to eventually fall asleep (I'm sure part of the panic was due to her fear that the noise would get really bad). Much to all of our surprise, my sister's primary complaint the next morning was that everything was too quiet and calm. It honestly made her hysterical for days. She would cry and cry about it being too quiet and she would aggressively shake different parts of her body, as though trying to get the vibrations started again (like in her hip and butt cheeks).

But within about two weeks of getting in the house things took a turn for the worse, in that her symptoms started coming back. Some of this seemed to coincide with the full moon--she had lots of banging and bouncing sensations in her back, which made her extremely upset, with lots of crying.

Now, about 25 days after coming back in the house with her body relatively calm and quiet, things are much worse. She has lots of panic attacks and continues to be extremely depressed. She constantly tells us "please let me die," "get rid of me," " please take me somewhere I can die peacefully." Though the noise and tinnitus have not returned full-force, she now complains of banging and vibrations in the ear, and bouncing and banging down her back. Today she's had lots of banging and pounding in her head, and complains that her head feels strange.

I honestly have no idea how things changed from when we first came in the house and had things calm and quiet (maybe it was just a strange lull or some kind of fluke). At first I thought it had something to do with the addition of Red Sage and Chinese Skullcap (at that point we were at 40 drops) b/c Buhner seemed to explain that they were involved with cytokine remodulation and that the cytokines might actually be responsible for some of the symptoms (at least that's what I thought he said somewhere).

But now, I don't know what's happening. The only real change is that we got those two up to 50 drops 3x/day. The rest of the protocol was already up to 50 drops 3x/day (CC, JK, Stephania, Chinese CC), plus red root and motherwort. We also recently added the Jernigan CNS/PNS detox.

At this point we honestly don't know what to do. I guess our primary problem is what I started this thread about: my sister has lost the will to live and is no longer compliant. I'm sure there are lots of detox things I could do with her, but she's simply not willing.

I tried to schedule a consultation with Julie McIntyre (mentioned in Buhner's book), but she's not available for new people until 2017. I'm going to try to contact two other herbalists from his book--I'm just hoping to find somebody who can help us.

I'll also go ahead and call the Hansa Center and see what they say.

Also, for the depression, I've added Lithium Orotate and TMG--so far, no difference. And for the panic and sleep issues, Valium has pretty much lost its effectiveness.

Also, I forgot to mention a couple of other new developments: in addition to panic attacks, my sister has developed fears/phobias of just about everything. She's now afraid to sleep (she spent almost all of last week trying to resist sleep and obviously sleep deprivation is going to make her feel even worse). Last night we upped the dose of Trazedone and that seemed to help. She's also afraid of the dark. She also has trouble swallowing (from my research it sounds like Lyme can do this), which makes getting drinks and pills in her all the more difficult.

The only symptoms we seem to have gotten rid of are her photosensitivity and the noise in her ear and body that used to force us to spend lots of time driving her in the car. Now she can actually remain in our home all day and night (though she often wears headphones and listens to a CD, which we think is more of a security blanket type of thing). It's just that she's miserable for most of the day and constantly telling us she wants to die. We actually had a relatively good night last night (she was calm and I actually saw her personality again), but this morning she was back to being miserable and tortured by her Lyme symptoms and strange feelings in her head.

I've honestly lost hope that we will ever make it out of this. This has destroyed my mother--she's lost so much weight from the stress of this nightmare.

Hi LauraJK!-

My heart breaks for your sister, you, and your parents. You have all been through so much!

The love & patience that you and your parents have for your sister is Commendable!!!!

Sending you and your family many, many, many ((((Hugs!)))) to make it through this difficult time.

Best Wishes!

Hi Laura -

SOOO glad you posted an update. We've been thinking of you all.

I completely agree w/ CD and T.

I also wanted to suggest that I know it's frustrating that there's so little progress but that is not entirely unusual for lyme & co treatment. An almost immeasurable amount of progress, and then really bad days, and then a glimmer of "normal", and then back to bad days. But you are making progress.

Your sister will barely notice it. I barely notice my progress until I'm way out in front of it.

Also, please keep trying to get into see Julie and others. Politely be a desperate nuisance. Make sue you are on all waiting lists and keep checking back - even when they say they'll call you. They can't know how complicated your sister's case is but they can understand your desperation.

Please remember to take care of yourself. She needs you to stay healthy.

And I am going to try Red Sage and Chinese Skullcap for my tinnitus - thanks for posting that!

Maintain what you're doing and maintain hope.

-p

Pirouette and Traveler--

Thanks so much for your responses as well--I guess you posted while I was writing my last response.

On binders, we tried to do charcoal, but had to stop b/c she simply wasn't drinking enough water.

I really think one of our hugest problems is that my sister is no longer compliant and I think that's simply b/c she's tired of suffering and wants to die. Until we went to the LLMD, she was completely compliant and willing to drink tons of detox waters, nasty tasting juices and take tons of supplements and pills. But after going to the LLMD and the huge uptick in her tinnitus, everything changed and we haven't gotten back to working together.

Plasma rife for bartonella ..it has helped my tinitus ...there is always hope ...build her gut ..goat yogurt with stevia ..sourkrout ,kombucha ..go around the mountain not thru it ,nystatin syrup if on fruit ..please keep hope

Thank you so much for updating us. I feel so bad for your sister. The tinnitis must make her feel so agitated.

God Bless you and your mom. The devotion you have for your family is admirable. And I am sorry it has affected your moms health.

I am so glad you are getting help. You and your mom need time away. Your wellbeing and your sisters depends on it.

May I make some suggestions?
Try just reducing the dosages first, as this will continue the treatment and hopefully will keep those symptoms from coming back. I would encourage you to drop to at least 1/2 of what you were giving her - no more than 25 drops and only 2 times a day.

You may find you need to drop to only, say, 10 drops twice a day though, so try to evaluate just how her symptoms change. I know that this is the hard part, but you are the only one that can do this.

Will she allow you to do any dry skin brushing? What about Alka Seltzer Gold (must be the "Gold")? If you can slip some alpha lipoic acid or liposomal glutathione into her juice, that would help with detoxing as well.

I really believe that you will see a big difference if you can just find some ways to get her poor body detoxing more, as you described perfectly how, when we start treatments we can suddenly be overloaded with toxins. As the bacteria dies, it produces Neurotoxins that can and do increase our symptoms and bring on new ones too.

Have you considered Jernigan's Neuro Anti-tox PNS/CNS formula? Because it's drops, you should be able to sneak them into her juice as well: hansacenter.com/product/neuro-antitox-ii-cnspns-tm/

Wracking my brain - which is struggling today due to a new thing I added (e-hem). If I can think of anything else, I'll be sure to share it with you here.

And keep being the polite, but squeaky wheel with these doctors!!

I am so sorry for all that you are going through with your sister, but you my dear, ARE A WARRIOR. God bless you and your family.

So much great advice has been given. However I just wanted to add that my doctor recommended that I not go over any one herb more than 40-50 drops a day, total. His opinion is that the body just becomes way too toxic. I know that we are all different, but just passing along his viewpoint.

Keep up the fight....you are doing GREAT!!!!!

Traveler-

Thanks so much for the suggestions on how much to reduce her dose--honestly, that's what I'm looking for, just some opinions and guidance. Yesterday, we didn't even finish one of the three juices, so her dose was only 1/3 of what she normally gets. I try to add nutrients to her juices (liquid Alpha Lipoic, CO-Q10, L-Carnitine), plus some powders (Glycine, for detox; Lysine, for her ears; and D-Ribose)

We were more successful yesterday with the detox waters (we did 8, 5 oz). Yes, we have the Jernigan CNS/PNS and have been doing that at full dose (40 drops, 3x per day) and then adding in the Pinella/Burbur waters. For the past few days, I've been able to get NAC detox and Milk Thistle in with lots of begging (the whole day involves begging for every pill and every ounce of juice and water)

No, on skin brushing- I bought the brush, but she won't allow me. The other night, I thought we were making progress on her agreeing to a detox footbath, but she was only willing to stick her foot in for a minute or so.

Our biggest problem and moral dilemma right now is that we have a mentally retarded person who does not want to live any longer--she has told us over and over that she's tired of fighting Lyme and wants to die, which is why she fights us on juice, water and pills, b/c she see those as attempts to keep her alive. She begs us to take her somewhere where she can die peacefully. She is intellectually unable to understand that there is no such place to go to. She doesn't seem to understand that by resisting us, she is only prolonging and increasing her misery.

We honestly don't know what to do. My mother has contact with other parents of Down Syndrome people (my sister's friends), but they really haven't been helpful and don't understand Lyme. They just tell my mother to take her to Children's Hospital in Philadelphia b/c they have a program for adults with DS. But from our perspective, we don't see how this will help us, since it's highly doubtful that they know how to treat Lyme.


Peteza-- Last time my sister had loose stools/diarrhea from the Azithromycin, the bananas (plus S. Boulardi) were really helpful in stabilizing her. At this point, she/we would welcome constipation. I honestly don't know what's happened to cause this latest problem, but it's definitely the last thing we need. She gets extremely upset over stomach cramps and diarrhea (it's honestly traumatic for her)

Krimpet- thanks for the info on number of drops--that's honestly been the hardest thing for me to figure out for my sister. I think we might have hit a sweet spot on the dosing w/CC, JK, and ChineseCC at 50 and the Stephania, Red Sage, and Chin Skullcap at 36-40, but once we passed that level on Steph, RS, and ChSk, things took a turn for the worse But it was hard to see what was happening in time to make adjustments b/c some of her symptom worsening coincided with the full moon, so that's how we were making sense of things.


TitusNana--Thank you so much for your response and sympathy--it sounds like you really get what we're dealing with. Honestly, in my sister's defense, she was truly compliant for quite a while. When she had IBS/SIBO, CFS and Fibromyalgia, she did everything I asked of her, stuck to her diet perfectly, took all the supplements I could find and we pulled her out of this. Back then, she wanted to get better and to get her life back (she actually used to be quite functional and independent--she had a part-time job in the mailroom at an insurance company, where she was truly loved and she took transportation to get there on her own, and she was completely independent and able to take care of herself and she participated in a number of sports). And even when this Lyme nightmare began last fall, she was completely cooperative with me as we were working on Buhner's book 1 protocol. She complied with everything until we went to the LLMD--I honestly think that's what broke her spirit and will to live. The terror of the bloodwork, the uptick in her worst symptom (tinnitus), and the GI side effects of the antibiotics, were all too much for her. Ever since then, it's been a battle, with us fighting for her life and her wanting to die.

Yes, it's been completely exhausting--it's mainly a burden shared by my mother and I, and I'm the one who is more successful at getting the OJ, water and pills in, so it really falls mostly on me. And yes, my sister's latest fear of sleep (new as of July) is really killing us--she resists as much as possible and it's a struggle to get her more than 4 or 5 hours, and this, of course, leaves my mother and I sleep deprived. There's not much I can do to take care of myself--there's honestly no time. Perhaps if we get a home health aide, things will change.

Well I just wanted to add a quick update that I have a phone consultation scheduled with Tim Scott on August 24th. I'm hoping he can provide some kind of guidance b/c I'm honestly feeling so unbelievably lost and hopeless--I just feel like we are losing this battle.

My sister has started to have problems with "banging" and "bouncing" sensations. It was really bad around the full moon (banging and bouncing in the back) and caused her to be in an extreme state of distress.

We also had some banging sensations near the new moon--once in the head for a number of hours and then another time in her left ear. And the banging in the ear sensation lasted for a couple of hours in the middle of the night--she honestly seemed as though she was being tortured (she kept loudly sobbing and yelling "please make it stop"--it was so painful to watch her suffer that way). Eventually, she fell asleep after being given Benedryl--but then she woke up a couple of hours later, saying it was still going on. Of course, having any of this stuff happen during sleeping hours only adds to the fear and anxiety.

Yesterday, we seemed to have a better afternoon (calmer and not as many complaints about Lyme symptoms). But last night, she started having major problems with her left ear. At first it was a vibration that wouldn't stop, but then it progressed to a pumping sensation (accompanied by some kind of noise) that was driving her crazy. She was again sobbing for us to make it stop. We didn't know what to do, so we ended up giving her a couple of Valium. Unfortunately, the drug has really lost its efficacy with my sister (it only got her about an hour of sleep).

And all day today she's been complaining of the banging sensation again in both ears. I really think she can't take much more of these torturous symptoms. I honestly don't know what we are going to do.

I think tonight we are going to have to give her Ativan. We got it from the LLMD and tried it a couple of nights ago and it was able to finally get her some solid sleep. We are really nervous about using these benzodiazepines, but I don't think we have any choice.

We've already reduced her drops and are trying to keep up with the detox waters.

I'm absolutely terrified for my sister. I can't believe how bad things have gotten, when all we've been doing is working at this. I can't tell you how absolutely painful it is to watch her suffer like this.

Laura, Since you mention the full moon - have you done any parasite cleansing? Those buggers activate during the full moon, making things worse. Years ago when I got Lyme for the first time, and I had no hope, I noticed that I did much better after completing a parasite cleanse. Slowly, I gained hope. That's how it worked for me. There are drops and there are capsules. I've used ParaGone a few times. I like ParaCleanse by Nature's Sunshine, but I'm sure there are many others. Some of the Lyme co-infections are parasitic, and I think these anti-parasite herbs pull down pathogens, in general, based on how my body feels when doing them. Possibly you could all do a series? I involves a twice a day swallowing routine, with water. Pretty simple. Another good one is CandiGone, which knocks down some of the candida. These are not formal Lyme protocols, but they do help get the body in better shape.

Thanks for all the supportive comments.

I don't have much time, but wanted to post a quick update. Things seemed to have calmed down. Late this afternoon I gave her Kudzu, Chinese Skullcap (capsules, different from the drops I put in her juice), NAC Detox, and HydroxyB1 and a little while later things seemed to quiet down (banging and noise)--she actually said it was much quieter and cracked a smile. I just gave her another dose of those. We'll never know if one or a combo of those helped or if it just settled down on its own.

Actually, though, the more I think about it, the more I'm starting to wonder whether it was the HydroxyB12 that helped. We were actually doing lots of those during our 24/7 time in the car when things seemed to quiet down, but haven't been doing much of them since we got in the house (mainly b/c she started spitting them out). Instead of the HydroxyB12, I was doing MethylB12. I just found this article here http://www.tiredoflyme.com/ammonia-a-lyme-disease-exotoxin.html that talks (near bottom of article) about possibility of Hydroxyb12 getting ammonia out of the brain. I still have no way of knowing, but for the rest of the week, I'm going to keep up the HydroxyB12 (6 per day) and see how things go.

Post Edited (LauraJK) : 8/7/2016 7:09:58 PM (GMT-6)

Progress is a beautiful thing.

Keep looking for small steps to take. It's really wonderful how you're also posting your progress. So many of us are following your journey and you can be sure that many others are also reading - waiting for an opportunity to offer input or hope. There is much to learn from here.

-p