I feel like I am sinking in quicksand. I know I can’t get out by myself but I also know that if I don’t take action of some kind I’m going to sink further and eventually suffocate. I don’t know who is the best person to help me (which doctor). I don’t know which of my body systems is causing the symptoms I’m currently experiencing. I’m filled with fear about my unanswered questions.

My current symptoms:

Pain and rigidity in the muscles of the right side of my neck, my ear, the base of my brain, extending up into the crown of my skull. Pain ranges between a 6 and 8 and was not relieved by the 4 Vicodin I took yesterday.

Pain also extends deep into my right clavicle and top of my back and down into my lower ribs. My cervical and thoracic spine feel as if they are fused into one brittle bone that could crack under the right amount of pressure.

I have no appetite and I’ve lost more weight. Eating generally disgusts me. Yesterday the scale read 123 but I think it may have been off because this morning it read 129. The last time I weighed this much I was in junior high. I feel like a frail elderly person on the verge of turning 53.

I’ve been so distracted and unable to stay focused on things. I walk through my house with three words in my head (the most it can hold) to try to keep myself on task. For instance when moving from the bedroom to kitchen to get something I’ll recite, “water, medication, microwave neck thing” as memory cues. Often even this doesn’t work and I have to return to the original room to try to discover why I left. It’s not the normal kind of forgetting that happens as we age. It’s 1000 times worse than that. When people attempt to tell me stories in conversation and are describing something my brain turns into a sea that sloshes back and forth. I try to pick up key words and often have to ask them to repeat themselves slowly more than once. My mother died of Alzheimer’s 18 months ago and I often worry that I have it too.

Debilitating fatigue and weakness. Tuesday I went to my guitar lesson which was an hour. By the end I was so exhausted I felt like I needed to crawl out the door. Every time my teacher started to explain something to me I had to just look at her and appear to be able to comprehend. Inside my brain it was all just sloshing around like a buoy in a windstorm.

Intermittent nausea which leads to vomiting for no apparent reason.

Poor fine motor control. Things I used to be able to do easily I now have to give up on because my fingers shake and make it difficult for me to grasp or maneuver small things. This morning I tried to replace the screw in my son’s eyeglasses. I had to give up.

A complete inability to sit still for long. As the day goes on this increases and I notice in the evening my feet and legs are tapping all the time without reason. By three pm everyday I begin to melt mentally emotionally and physically. My only thought is getting through the duty of feeding my child and getting him to do his homework (which I only sometimes succeed at), wishing it over as soon as possible so I can lay down. I don’t want to lay down. I want to accomplish things, housework, laundry, etc. This cycle frustrates me immensely. I turn the TV on only to attempt to anchor myself to a location. But there is so much toxicity on TV and not much good. The negative messages that ooze from television are constant.

I’m constantly anxious and worrying. Worry and fretting about my son, my partner, my siblings, my future and whether or not my symptoms are an indicator that my body is nearing death. I feel most days like at any moment something really bad is going to happen as a result of something I’ve missed or forgotten. Or because of something that someone else is missing (the white coats).

I’m unable to start and complete simple tasks like paying bills, etc. I get so overwhelmed by the idea of handling paperwork related to my disability, doctor appointments, insurer carriers, etc, etc, etc. I try to pick things out that will blow up if I don’t tend to them and complete those things but I am not always successful, and as a result it feels like things are blowing up all the time.

Constant worry about environmental toxins and whether or not my apartment contains toxic mold (I’ve seen black mold in the building) and I’m too afraid and overwhelmed to proceed with the testing. I set mold testing plates out once and put them in the dark for three days and they were covered with thick growths of white black and dark green mold. They scared me so much I had to just leave them there for a while before I could throw them out. I’m worried that my son is being exposed to mold and that it’s my fault because I haven’t done anything about it.

I’m constantly worried about my son’s health, his Lyme disease and what I should or shouldn’t be doing to help him. In the midst of this his mood swings have been off the chart and on more than one occasion I have been afraid of his anger and that he might hurt me. Yesterday he charged at me like a mad bull at a matador. I stood still, closed my eyes and waited for the blow. My action seemed to stop his rage enough that he didn’t go forward. Later when he heard me sobbing in bed he wrote me a card saying he was sorry and brought me chocolate. It reminded me of what its like to be in abusive relationship. Earlier in the day he had informed me that he and his other mother have been planning to have him move in with her when he is 12 because of his hatred for me. He told me he has a belief that he has the legal right to do this. If my ex-partner was someone who had the ability to care for my son better than I can I would consider his rotten plan. But that is not the case. She struggles to care for herself, threatens consequences but does not follow through, and has been attempting to poison my relationship with my son since the day he was born. Apparently she has succeeded.

I’m worried about the molar I had pulled that was infected about a year ago. I went to a really bad crack ho dentist. When I told him about the pain I was experiencing for several weeks after he pulled it, he had me come in, told me it looked like it got infected but it was better to just let it “seal over” rather than getting in there and messing around with it. Prior to that event I only had left-sided pain, and now my pain is frequently centered around the spot where the molar was removed on the right side. And that pain seems to be exacerbated by the Lyme meds.

Everything about my physiology feels dry. I don’t seem to produce much saliva. My right salivary gland frequently swells up and locks my jaw. My tongue is constantly sore and burning. My skin and hair are dry and coarse. It doesn’t seem to matter how much water I drink, and I drink a lot because I’m always thirsty.

I’m also worried about the MRI I’m about to have. I’m fine with MRI’s but this one is of my brain and with contrast (ie injecting me with a substance that could be something I’m already being poisoned by, heavy metals). And I’m afraid what they will find.

As the day goes on the muscles of my head neck and shoulders progressively tighten involuntarily. Feels like my body is curling up on itself. The only thing that helps is to lie flat so that no gravity is exerted on my upper body.

My bladder feels like I have to pee all the time even right after I just went.

I have mood swings that range from loss, grief, sadness, to anger irritability and rage multiple times in a day.

I can’t rest naturally. I need a pill to put my body to sleep (thank god it works).

Last Saturday I woke up and it felt like the ventricles of my brain were on fire. I began to suspect that I’d gone hyperthyroid over the weekend and I stopped taking my Synthroid for a few days. I’m not sure though, that my thyroid (or the lack thereof) is the culprit. It could be a million other things. I called the Neuro Lyme specialist and I have a phone appointment with her on Friday that I will likely have to bleed more cash out for to add to all I’ve already spent. Last night I didn’t take any of my Lyme meds just to see if it would decrease my pain today. But I don’t know if that is the culprit either. My pain today is eased a bit from yesterday but as the day goes on it will likely light up like a barbecue doused with lighter fluid.

Yesterday for the first time in a long time I wished for death to relieve my suffering. I can’t even imagine a non-suffering space anymore. Can’t see it, can’t imagine, don’t believe in it. Sometimes I notice I am reciting these three words inside my brain to an un-named higher source.

“Please help me”.



8 thoughts on “Help

  1. Well, you have an MRI scheduled, which is really good. I wonder if something is putting pressure on a nerve or a part of your brain.

    I am so sorry that you’re feeling like this. I am glad that you wrote, and I will keep you in my prayers.


  2. Dear Person, I feel your pain. I was likely on the wy to that state myself this time last year although yours are more severe. If I were you, I would go to yahoo GROUPS, copy and paste your story on the Yahoo Groups: Lyme_and_Rife. You will have to ask to join, but anyone can who agrees to the group owner, jim’s, rules. He is a wonderful man, and I believe he will respond quickly to your story as will others on the group site. They are a very loving and knowledgeable bunch. Maybe put URGENT: HELP in the “Re:” section. Also, get Bryan Rosner’s latest book on ways to fight Lyme. In that book, look up MMS as well as “biophoton therapy.” Then listen carefully to Jim and others on the Yahoo group, Lyme_and_Rife, because they all have lyme and will guide you. As far as doctors in SF bay area, if you want a woman, go to Christine Greene in the city. If you want a man go to Dr. Stricker in the city. If you want warm and fuzzy, go to Gordon Associates and try to see Dr. Neil Nathan. If you can go to Seattle, I would see Dr. Klinghardt. You can listen to some of these doctors via their web sites. I go to Jacqueline Chan at Marin Natural Medicine, and she is very good as is her partner, Todd Maderas. You need to connect to other Lymies. You could also join “Meet Up.com” the group in Marin for Lyme meets once a month on Monday evenings and there is another in Berkeley once a month as well. There is a huge lyme group that meets at SF public Library on Tuesday afternoons. You must hook up with the Lyme community. You have written and alarming and compelling account of your pain and misery, so copy it and paste it and see who responds. I believe that Jim the “owner” of the Yahoo Group, LYME_And_RIFE will be a wonderful start. I am praying for you, I hear you are in pain, you must reach out immediately and for your son’s sake, too. Bonnie

    Liked by 1 person

  3. Dear Pain,

    I have been exactly where you are and know how scared, overwhelmed and confused you probably feel. You need to immediatly join The Lyme and Rife group on yahoo. This will save your life and everyone will help you through and give suggestions that will slowly make a difference. Jim, the moderator, has litterally saved my life and is smarter than all the Lyme literate doctors, specialist, Neurologist, Psychiatrist, Pediatricians, pain docs, etc….. I have seen over the last 15 years.

    I live in the bay area and have been a patient of all the doctors mentioned in the comment above. I would also consider Dr. Harris in Redwood City. He devolped the Igenex test for Lyme. I also have a rife machine and Infrared sauna that are used to kill and detox from Lyme. I would be happy to let you use them once you get familiar with the protocols we use on the yahoo group.

    I also have a great SSDI if you can’t work and need help filing. She specializes in Lyme.
    My daughter is 16 and also suffers from Lyme. She has not been to school in over 2 years. You must get yourself help so that you can help your son.

    Do not give up hope!! Take one moment at a time and be very patient and kind with yourself as this is a very serious and misunderstood disease.

    Also, as Bonnie mentions support groups- there is one in Oakland that meets at Kaiser every 3rd thursday of the month. check out Meetup.com and betterhealthguy.com offers excellent info and is in Sonoma Ca.

    Bless you,

    Liked by 2 people

  4. Dear Pain,

    Don’t give up as I have felt all the symptoms you describe.
    Please join the Lyme and rife group on yahoo groups immediately!! Jim, who is the moderator will help and guide you through the protocols we use to get well. There are wonderful people who will also support and encourage you along your journey of ups and downs.
    Jim is the most knowledgeable and smartest person I have encountered on Lyme and co-infections. I have seen over 30 doctors all over Ca. and Jim’s knowledge far exceeds them all!!

    Bonnie mentions great options for doctors to get you started. I would also ad Dr. Harris in Redwood city, he developed Igenex testing for Lyme disease.
    If you can’t work and need help filing for disability I have a great SSDI attorney in Berkeley.

    Please be kind, patient, and forgiving to yourself as this is a very misunderstood and cruel disease to have.

    My daughter is 15 and also has Lyme. she has not attended school in two years and as a mother you know how truly heart breaking this is. There are no words to describe the suffering of our child!

    Do not give up hope as you must get well for your beautiful son to get well and have a life one day!!

    I have a rife machine and an infrared sauna that you can use when you are ready. Also, check out the betterhealthguy.com and meetups.com. There are Lyme support groups in Oakland as well depending on where you live.

    Bless you and know you are not alone!!



  5. It’s the guessing game that makes me crazy, too. Why m I suddenly feeling so bad? Was it something I ate? some medication? my environment? I go around in circles for days, asking questions that not even the medical community has definitive answers for…

    I’m so sorry you are suffering. 😦


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