Running out of Lyme

WIfe was recently diagnosed with Lyme disease. It's been at least an 18 month journey to get here and we did start on some non-antibiotic treatment. My question revolves around what I would characterize as a neurosis symptoms that have been plaguing her for a long time, perhaps longer then when the physical symptoms started to show signs.

She started to become reclusive, then would just take off for the day with no explanation of where she was. When I questioned her, it was very bad, just lashed out viciously. Things progressively got worse and worse, she would go on spending spree's, constantly trying to bait me into a fight, would not socialize with the family, stopped any and all responsibilities. I picked up the slack, thinking that if I gave her space and let her see a therapist things would get better. We tried going to therapy, she eventually dropped that as the therapist started to zone in on her being the issue and she threw a fit and stormed out, and then the physical ailments got worse and worse, mentally she could no longer hold it together at work. I stayed with the therapist to work on my resentment and anger, and I have made a hell of a lot of progress here.

Anyway, after digging and digging and going from doctor to doctor and state to state we finally have what appears to explain at least some of this, certainly the physical aspects, and at least some of the mental ones with the Lyme diagnosis. We joined a Lyme support group which has been helpful, and I can hear things that are common....the Lyme rage....people saying they put their fist through a wall, hitting themselves....all things that I have witnessed my wife do.

But...what is really difficult is the maniacal need she seems to have to try and squash me emotionally, to make me out like I am a horrible husband, driven to just deride me and try to make me fell bad about myself and always, always claim that I do not do enough. I understand that she is in pain and scared, but it doesn't make sense to me that as the only one that really can help her and does everything I can think of possible that she would treat me this way. SHe has told her friends that I am trying to poison her because they found high levels of heavy metals in her body. We later find out that this is common in Lyme disease. A couple of days ago she called with another ailment flair up and asked me what she should do. I tell her to go back to her PCP. She discounts that, saying that he does not know what he is doing. I tell her that we have 2 LLMDs about to have a conference with one next week, and another in March (all of which I arranged for), and she tells me what is she supposed to do, just continue in agony? I tell her that I am not a doctor and that is not what I am trained to do, but now she is yelling at me saying that I'm a crapty husband and I should be doing something about it. Then I tell her I had vbrought her to a pain doctor last month and she hadsn;t followed up with any of the protocol....Anyway, you get the pictiure. This has been my life for 18 months and I swear I have had maybe 3 weeks of not having this daily grind.. She could go on for hours and hours of twisting anything I say or have said, making them out to be a direct assault on her if I didn't just get up and leave. I am being honest here, I would not be able to speak a word and she will just sit there and beat and beat on me emotionally. Her mother came to town and tried to deal with her, and after about a week just had to leave. I spoke to my father-in-law and said that her mother won't be coming back, as the emotional trauma she inflicted on her took months for her mother to get over. So I am pretty much stuck with this alone, and praying that things could get better with treatment. We started treatment about a month ago and after a couple of weeks I did see some improvement, She stopped being so paranoid and antagonizing. I could actually hold a conversation with her for short periods, headaches started to go away. This gave me hope, but over the last several days I see her relapsing again, going back to the delusional thoughts and trying to cut me down. I have learned a long time ago to just not respond at all, even when she follows me around and makes me listen to it, I just tell myself it's the disease. My children have told me I should have left her long ago, but I can't do that, she would fall apart and die, although I know I will not be able to continue with this level of emotional abuse for too much longer.

I am doing my best to help her and go out of my way to avoid conflict with her, but with the burdens of a full time caregiver, full time job, for all intents and purposes a single parent, the one that does everything, and I mean everything fromt he laundry, the cooking, the cleaning, chores while she walks around and just leaves her mess everywhere, I just don't know how much longer I can take this. I swear there is no way for me to even air my grievances with her, it would just be distorted as me being abusive. Basically, she seems to actually revel in the idea of making things harder for me and seems to almost purposely put more and more obstacles in my way.

So, my question is, can anyone honestly relate to any of this in their marriage? I know Lyme effects everyone differently, but I guess I need to know that there might be some hope here. Does any of this sound familiar to any of you or is this going outside of the Lyme spectrum into something differnt? She certianly wasn;t like this in the past, and I swear we had a very strong loveing relationship, she just isnpt the same person. Is it possible at all that recovery from a mental state like this is even possible? Please let me know as I desperately need some hope to continue this grueling path.

This is deeply saddening to me, because you're obviously a very caring, committed husband, doing what seems to be everything you can to try and get her the help she needs.

You're very understanding of the situation as well. These infections can really do a number on the mind. Some people don't even realize they've changed, or just how much. I feel as though your wife is one of those people.

That really sucks, especially because it's making her act in ways that are damaging to what's otherwise a very beneficial relationship to her. As I said before, you are obviously trying to do what's right.

I mean, you hear talk of spouses and families not giving a care in the world, misunderstanding, or even distancing themselves from people when they get sick. They won't believe them. They'll call them attention seekers. They'll treat them like garbage.

Here you are, quite possibly her biggest ally, and she's acting like that. That's just terrible. I would love if I had a significant other who could go to such lengths for me.

But, again, I can understand. It messes with your head. The only real, lasting way around it is treatment - killing off the infections, giving the body and mind the opportunity to heal. Therapy might help, but it'd be best if you could find someone with experience in dealing with people with Lyme/chronic illnesses, which may be even more trouble than finding an LLMD.

Other than that, I don't know, keep doing what you've been doing - try to be as easy with her as possible, let her know you're not the enemy, even though it should already be apparent.

I feel for you.. and feel for her. Just ain't right.

I am a fortunate woman. I could see me being like your wife though. I run this house. When I first got sick I hated. It was my way of disliking what was happening to my body. And I, being the woman, was the caregiver, the nurturer and here I was sick with no nurse.

My husband has heard my complaints over and over and his sincere words I can still hear him say "Honey, you are handling this so much better than I ever would." Gosh, that made me feel so strong and capable of beating this thing.

My husband always gives me his hand on stairs, he calls and says "is it a good day?" He listens! Oh my gosh how does he have the fortitude to listen to my aches and pains??

And most of all we have always been a humorous couple. Always joking and laughing. He just knows how to make me crack up. And he does it when I need it.

He also says "let's not watch that, let's watch something funny." He wants to watch that drama but knows it will make me cry.

I tell everyone that if you treat your spouse like you would your best friend, you will have a long marriage. When I get up to get me some water - what would I do if my best friend was still sitting there? -- I ask if I can get him anything. Both of us live by this rule in our home. Be polite. Say please and thank you to each other. Are we not more special than a best friend?

It is the easy simple things that show respect and love.

I am an old woman so I do have a little experience and when I run out of experience I call my 84 year old Mom and ask her. She is my idol.

I do not say these things in anyway make you feel badly. Just lil helpful hints of how I am making it with my husband.

I just know how important my husband is to my care. My mental state has been very bad so I understand your wife. I would hate to see your wife do something to harm herself. She probably does need help and I would think that the best person would be her LLMD.

They really do make happy pills. My first visits to my LLMD I cried through the entire visit. It is a hard thing to swallow that you are no longer how you used to be. It is hard to swallow that you are sick for so long. It is hard to swallow that you have been sick for months and you see no hope in getting better. It is the hardest thing of my entire life not being who I loved being.

Hugs of comfort and please know I say this with love and not malice.

~Annette

To the above, I really appreciate your kind words, and Annette, I in no way take offense to your words of advise and certainly welcome them. We are just at the beginning with finding out she has Lyme. Yes, I think she does have the co-infections mentioned above. I am still learning the Lyme lingo, the last month has been like drinking from a fire hose. Right now she is being treated with Artemesinin, Boluoke, BLT, DHEA, also (Iron, Iodine, Vit A/D/C/K2). Like I mention before, I did see a slight mood improvement, the anger spell went away for a few weeks but they are back again.

I have been reading as much as I can on this, as she can barely care for herself. I am considering coffee enima and FAR infrared suana. I also heard good things about Colliodial Silver, but since I am no doctor, I am afraid to start experimenting.

The LLMD that found this is in another state and he prescribed the above last month. We have a telephone conference with him at the end of the month. I also found a local LLMD (a few hours drive) that agreed to take her case and we see mid March.

The biggest problem for me is not that she isn;t healthy or can;t do anything, it's that in her mind I am the enemy and she lashes out at me constantly. She has never once appologized for any of the constant rants, never seems truely appreciative of all I am doing. I do constantly ask her if there is anything I can do for her, bring her etc. Like I said, I cannot respond to her attacks, when I occasionally do she just talks over me.

Anyway, the people who have revealed here seem to go in and out of the anger, then feel bad about it afterward. WIth my wife, she is just constant negative and hurtfull, then many times a week it goes beyond that to where she is muttering hurtfull thiings at me for hours on end. So it goes from very bad, to worse. Seems like many of you have good days and bad, and it goes away in between. I would be much happier if that were the case but it isn't.

Right now it seems like she is her own worse enemy. She is abusing the only one that truely wants to help her. It is so difficult to understand this...

Here are some suggestions for detoxing.

www.tiredoflyme.com/detox-methods.html

And maybe purchase some earplugs. There is my humor!! What you don't hear, can't hurt you. LOL

Probably not the right time to be funny!

I think you hit the nail on the head. She has a lot going on. Menopause is worse than stinky for some women. It was horrible for me. Make sure you mention it to the doctor.

"Like I mention before, I did see a slight mood improvement, the anger spell went away for a few weeks but they are back again." This screams that her body is not able to deal with the toxins that are being created. You will have to somehow get her to detox more. Do you think she would come here and post? What about emailing with me, do you think she would do that? (I don't want to volunteer anyone else).

"The biggest problem for me is not that she isn;t healthy or can;t do anything, it's that in her mind I am the enemy and she lashes out at me constantly. She has never once appologized for any of the constant rants, never seems truely appreciative of all I am doing. I do constantly ask her if there is anything I can do for her, bring her etc. Like I said, I cannot respond to her attacks, when I occasionally do she just talks over me. "

It's amazing to me how many people go through this - including myself. We really don't understand that we are that misguided. We honestly don't believe that the other person really is on "our side" - this is all being done by the infections that she has though, it's not what she will really believe once you get to the other side. I had nothing but bad days for a very long time. It was a constant struggle to not just start screaming the minute I got up - why? Because I was completely miserable. Imagine waking up every single morning more tired than you were when you went to bed. Or loosing your train of thought constantly in the middle of a sentence. We are angry for good reason to be honest, we are miserable - but we can direct it at those that don't deserve it unfortunately.

And although we all love PeteZa's humor, please don't buy the ear plugs.... that likely won't go over too well at this point!

Keep coming here and asking questions!

And kudos to you for hanging in there with her!! My hubby did and I'm sooooo very grateful!

Makes my heart break to know the pain you are going through. I immediately went and told my husband how much he helps me.

I watched my daughter die from breast cancer. She and I joked how she had the easy part and how hard it was to watch someone feel so horrible and be unable to do anything. I so often said "let me take that chemo dose for you." "Let me get that radiation." "Let me have another surgery." "I will take that blood transfusion."

I know all too well how hard it is to be the one watching. It is horribly hard. And to not know what to do, you feel worse.

You have made a huge step in coming here and she is very fortunate to have you.

Anytime you need support, please feel free to come here.

Holy Molly! When you talk about the Superman thing...thats really familiar. She tells me all the time that she wants me to fix "it". I'll ask her what she wants me to fix, she says everything, the pains, the swelling, the headaches, the brain fog, the finances...everything. I tell her I am not a doctor, and she says "you are my husband, you are supposed to fix it"....and she is not kidding!

I found that researching on the net and going to the health food store now and then and picking something else out to try helps a little. FUnny you had a similar experience.

Hi Overwhelmed,

My heart breaks for both you and your wife.. You are truly a beautiful person for loving and supporting your wife! And it takes courage to reach out for answers and support!! Personally I become sad when reading these posts because my 2nd husband didn't support me at all when I was sick with chronic lyme. He was the one who picked fights with me and some years later our marriage ended. Your wife is sooooooo lucky to have you!

Getting back to toxins, yes, she needs to slow down and not be aggressive with the detoxing "depending" on how bad she feels after a detox bath or using an infrared sauna. It's normal to feel worse when first starting a detox protocol. Everyone is different and some can handle feeling a little bad after detoxing.

One of the toxins I had was Ammonia which effects the brain. I had the lyme rage, brain fog, erratic behavior, etc. What helped me bind up the ammonia in my brain and body was a botanical called Neuro-Antitox CNS/PNS Formula by Dr. Jernigan. I am not promoting Dr. Jernigan just telling you what helped me.

Dr. Jernigan wrote this in one of his articles:

"It was quite by accident, as is the case with most healing revelations, that I discovered that virtually every Lyme disease patient, MS, CFIDS, ALS, Parkinson’s, Autistic, and so many other Lyme-related illnesses were suffering from the neurotoxin, ammonia. The importance of this new discovery is that ammonia is very alkaline at a pH of 10 and is debatably the direct or indirect cause of virtually every symptom.

Many of these people were acidic according to Litmus analysis of their saliva and urine, but according to Direct Resonance Testing (DRT) they all had peculiar and very predictable localized accumulations of ammonia in their liver, heart, teeth, and brain. The exception to this is ALS patients who I discovered, and has subsequently been confirmed by other doctors, have a unique mixed infection that creates excessive accumulations of ammonia throughout the entire body.

I discovered that Borrelia burgdorferi, one of the primary causative agents in Lyme disease, actually release or cause the accumulation of ammonia as their primary neurotoxin. The ammonia accumulates in the brain tissues, some of which is converted to glutamine, by way of the glutamine synthetase pathways, leading tolocalized swelling of astrocytes (brain cells). This ammonia-induced glutamine accumulation may cause dysfunction of astrocytes that leads to impairment of vascular reactivity other than through a decrease in arginine availability for NOS leading to increased production of nitric oxide (Toshiki 2000).

It has been reported that many neurological problems are caused by either congenital or acquired hyper-ammonemia (Albrecht 1998)."

jernigannutraceuticals.com/Ammonia.html

I hope this helps,
Denise

Overwhelmed said...
WHen you say...If she's getting worse after detoxing, that means that too many toxins were mobilized during that time and she needs to slow down and not be so aggressive with it. Do you mean that the detox protocol was too aggressive or the treatment protocol was too aggressive?

As Deejavu explained, it's really both. Deejavu helped me get my body started detoxing, but we had to start off so very slowly as I explained because I kept overwhelming my body with toxins. For example, I tried the Epsom Salt soaks in a tub, and I paid for it for 3 or 4 days. I learned quickly that they were too powerful for me.

As the bacteria die off, they produce toxins. If those toxins are not removed by the body fairly quickly, they will get deposited in her muscles, tendons, joints, organs. The toxins are harder to remove when they are there, especially if the person has a body that has trouble detoxing, so we encourage everyone to use detoxing methods designed to help get those toxins mobilized in the blood stream - but we can mobilize more than the body can handle and end up feeling worse than before.

Everything is to be taken slowly with these infections, especially once the person has gotten to a point like your wife has, where it's interfering quite a bit with her life. Right now, I believe that your wife is likely dealing with not only an overload of bacteria, but an over load of toxins. Just getting her body starting to detox well will have an impact on how she is feeling, so I would encourage you to help her get started there, not with treatments right now.

If you can, it would likely be good to get some testing done relating to gene mutations. Many of us that have issues with detoxing have gene mutations that prevent our body from detoxing well, but it can be corrected if you know what gene mutations you have. This is most commonly known as MTHFR testing.

Hang in there, Overwhelmed. Everything has to be done one step at a time, but you will make progress with her health. Again, please let us know how we can help.

On the gene mutation...I had a conversation with the admittance people at Sponougle (BTW....too $$$$ to consider right now), and he was talking about gene mutations. One thing he was saying is that my wife had gone down hard and fast, and he suspected that as one of the issues. Also mentioned that many people who are blond hair and blue eyed have this mutation. I will bring this one up with LLMD.

Great, my plan now is to consult with these 2 doctors. I will definitely post here again once I get some input from them and would be great to hear your feedback. BTW...she is still in an altered place, continues to insist that I have mental issues and wants ME to go get counseling. She is actually mind reading and putting words into my mouth. Before I can get 3 words out of my mouth, she projects what she thinks I am going to say (which is all untrue and negative) and then is fixated on the distorted thought. She is going around telling our friends all this crap that is totally false. I can't reason on any level with her, just insists I am looney and out to get her. I can;t beleive how distorted her world is. I just want to help and talk about how we can progress....the hindrances she puts in the way are incredible to deal with. She is truely her own enemy.....I keep telling her how what she is saying or attacks on me is helping her. I am her only lifeline?

Sorry, I hate going on and on....I sound like such a sap. But is this even sound remotely plausible for this disease?