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    Old 04-03-2007, 09:17 AM   #1
    wmjsease
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    Really strange question/symptom.

    Does lyme disease cause a feeling like your brain is not getting enough oxygen? I know this sounds strange, but it's the only way I can ask it. It's hard to describe. Sometimes I feel so lightheaded that I feel like I'm going to pass out. Other times, I just feel downright strange. Like I said, it's hard to explain it. Also, what in the heck can I do for this head pressure? I've tried diamox. I must have been allergic to it, because it made me where I couldn't breath. I'm in between testing for things right now, and have not went back to my llmd yet. Still trying to get a spinal to rule out a few other things first. Then if all goes well, I'm going back to be retreated, and try to do it harder than the pulse therapy. Please answer.

     
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    Old 04-03-2007, 09:52 AM   #2
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    Re: Really strange question/symptom.

    Quote:
    Originally Posted by wmjsease View Post
    Does lyme disease cause a feeling like your brain is not getting enough oxygen? I know this sounds strange, but it's the only way I can ask it. It's hard to describe. Sometimes I feel so lightheaded that I feel like I'm going to pass out. Other times, I just feel downright strange. Like I said, it's hard to explain it. Also, what in the heck can I do for this head pressure? I've tried diamox. I must have been allergic to it, because it made me where I couldn't breath. I'm in between testing for things right now, and have not went back to my llmd yet. Still trying to get a spinal to rule out a few other things first. Then if all goes well, I'm going back to be retreated, and try to do it harder than the pulse therapy. Please answer.
    I have some strange feelings in my head also, that I really don't know how to explain, but I will try. If I am standing in one spot for a few minutes, I will start feeling like i am going to pass out, first I start getting hot, then I start sweating, I feel like What I call leaving the scene, like I am watching a movie, not really there, My ears feel full like plugged from an airplane and voices sound muffled, it's hard to explain, and very weird. Then if I stand to long, it's like at the movies when the curtain goes down and the round spot light gets smaller and smaller until it's completely black, that's what starts happening, that's the only way I know how to explain it anyway, I feel nauseous and have to put my head down. I have had to get out of lines at stores because of this. The pressure, I don't know if I really have that or not. I get terrible pain in my face, like someone axed me, I guess these are migraines, the only med. I have found that take it away or Zomig, no other migraine or pain med. works. Also have times when any sound is too loud, the sound is irritating and annoying, sometimes just my kids talking drives me crazy, and I love them very much, but it happens. Does this sound at all like what you are going through. I hope that I could be of some help. As for a solution to the problem, unfortunately I haven't found any. But I know that other people with Lyme describe the same feelings, so we are not alone. Good luck, Sarah

     
    Old 04-03-2007, 10:08 AM   #3
    wmjsease
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    Re: Really strange question/symptom.

    Thank you very much. It sounds a lot like some of my symptoms. As for stores, I don't go very much, because I can't stand to be around people much anymore. Just the movements, sights and sounds is more than I can stand right now. I am basically a prisoner in my home, which isn't really bad. I have learned to be comfortable with myself, and that I don't have to always be going places. Sure saves on gas. I guess it's a phobia type thing, because I'm always afraid I'm going to pass out, or get too dizzy/lightheaded to function. At home I can lay down when it happens. This is such a scary thing to deal with.

     
    Old 04-03-2007, 01:11 PM   #4
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    Re: Really strange question/symptom.

    Quote:
    Originally Posted by wmjsease View Post
    Thank you very much. It sounds a lot like some of my symptoms. As for stores, I don't go very much, because I can't stand to be around people much anymore. Just the movements, sights and sounds is more than I can stand right now. I am basically a prisoner in my home, which isn't really bad. I have learned to be comfortable with myself, and that I don't have to always be going places. Sure saves on gas. I guess it's a phobia type thing, because I'm always afraid I'm going to pass out, or get too dizzy/lightheaded to function. At home I can lay down when it happens. This is such a scary thing to deal with.
    I know exactly what you mean about being scared to go places.The people don't really bother me, but the fear of getting that passing out feeling does. I always make sure I go through the drive thru to get my prescriptions. Most of the time my husband does the grocery shopping. But we have 4 kids, and he works 50 hours a week and sometimes has to go out of town, so I have to go grocery shopping sometimes, no choice. The walking through the store isn't that bad, but I have to pull the cart behind me with my right hand, because I can't use my left, and people get irritated with me, because it's harder to maneuver that way. But then once I get in line and have to stand, that's the bad thing. If I was short I'd rest myself on the cart, but I'm 5'10, so, that's out of the ?. I did sit down on the bag carousel once, embarrassing. My husband has told me to use the scooters, but I am young and don't look sick, and I would feel so stupid, plus I don't think I could drive the thing with one arm, I'd probably crash into something, LOL! I go through days where I don't want to talk to anybody except my husband and kids, I just want to be left alone. But I also don't have any other family here, so I get lonely. Do you have dizzy moments when you are sitting down, like you just got on the merry-go-round? I have this and I hate it. I also used to feel like I was driving a Jetsons mobile, like the wheels weren't on the ground, but this has gone away, thank goodness. Hope that I could be of some help, Sarah

     
    Old 04-03-2007, 01:44 PM   #5
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    Re: Really strange question/symptom.

    Thanks. Yes I have a lot of dizzy moments when sitting down and standing. I gave up driving over a year ago, because I'm always lightheaded, and have the headpressure/headaches constantly. I'm only 36 with 3 kids. I can't even go grocery shopping or anything much anymore. Like you, I don't look sick. People think I am crazy in my family sometimes, because I won't drive anymore. I made that choice myself, because I knew that I would wreck, and hurt someone. Right before I stopped, I had to pull over several times, and call my husband to come and get me and the kids. Very scary. The dizziness/lightheadedness is awful. You know that feeling you have when lying down almost asleep, and it feels like you are falling? That's how I feel a lot. The room and surroundings do not spin like vertigo. So vertigo was ruled out. I hate all of this. And my eyes checked out fine at the eye doctor last month, but these floaters are awful. And sometimes my vision does funky things. I'm having to ask and depend on my family to do most of my shopping and taking me and the kids places. My husband works so much, that he's so tired when he comes in, but he does what he can also. I hate depending on people. The very people that I have to ask, are the ones that will do it, but talk about me like I'm crazy. They just don't understand. Sigh.

    Last edited by wmjsease; 04-03-2007 at 01:47 PM. Reason: to add more info

     
    Old 04-03-2007, 02:47 PM   #6
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    Re: Really strange question/symptom.

    I know what you mean. I feel like I am putting so much upon my husband, we have only been married 2 1/2 years and his family lives here, mine doesn't, and they pretty much hate me, his mom is the type of person that thinks everyone should cater to her, and she wanted me to watch her grandkids, take her shopping, have tea and pasteries with her, which if I was healthy and felt good I would, but she takes it personally, like I don't want to do these things for her and I am not a good daughter-in-law, she is rude to me when my husband is not around. Her sister told me that she says bad things about me,and she thinks I ruined her son's life, I was in a remission, owned a business and didn't know I had LD when we got together. A month before our wedding I went into a relapse, which I mostly blame on his mom for stressing me out and trying to control my wedding. I've gotten progressively worse since then. I love my husband with all my heart though and wouldn't leave him for anything, but his family makes me feel so worthless, and we already deal with depression without our families making it worse. She won't do anything for me at all, she sends desserts over here for her son, with walnuts, which she knows I'm allergic to. I am the one that is sick, and she should be helping me, but she hated his first wife too, and doesn't have anything to do with his kids, so I have to just say, OK it isn't me that's not right, it is her. I just wish that me parents lived here to help, or just to talk too. I am sorry that you cannot drive anymore, that has to be so hard with children. I am glad to hear that your husband helps. My first husband wouldn't do anything, he was a lazy bum! Even when I was in the hospital he wouldn't clean the house, do the kids laundry or shop. Have you went to an ENT? It sounds like you have vestibular neuritis. My dad has it and has all the same symptoms that you have. He is always dizzy, but not vertigo, has crackling and wave sounds in his ears and they feel plugged like he is on a plane. He falls into things all the time and can't balance well, and he definately can't drive. I honestly think he has LD, but he won't hear it, no pun intended! He has had Bell's Palsy, rashes, weight loss, swollen joints, shooting pains, numbness, and the list goes on and on, but refuses to get tested for LD even though my son and I have it, because his ENT told him that LD doesn't exist in Wa St. for all I know that is where my son and I contracted it, that's where I took the tick out of my leg. And my mom's dentist is now disabled because of LD. The ENT also told him that people with LD loss their mind. Great doc huh, so he won't even consider getting tested. I'm sorry, but neither my son or I have lost our minds, although we do see "dead people" sometimes, LOL Hope this could be of some help, and don't feelbad about letting your feelings out on this board, we are all going through this and really can only rely on each other to understand it. Sarah

     
    Old 04-03-2007, 03:33 PM   #7
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    Re: Really strange question/symptom.

    Thank you so much. I'm so sorry that your MIL is that way about you. She sounds like a really unhappy person. My inlaw family is better than that. They will take me places and do things, but they wonder why I can't still do the things I once could. And the sad thing is that I can't get a proper diagnosis to be able to tell them what it is. I went to a llmd, but they weren't sure. I was treated with pulse therapy for two months with no difference. I don't think it was aggressive enough. I'm going back after the spinal, ( if it rules out a few things) and demand the aggressive approach this time. I did go to an ENT, but they ruled out the ears. I think lyme is my culprit. Any glad you have a supportive husband and kids. That means a lot. My husband is great. And so are my kids. I am trying to stay away from people who talk about me, and bring me down. And I'm trying to stay positive. One day I will win this battle, either here on Earth or in Heaven. Thanks so much for your support and encouragement.

     
    Old 04-03-2007, 04:32 PM   #8
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    Re: Really strange question/symptom.

    Who was the LLMD that you saw? Did they test you for Lyme using Igenex Lab? I'm kinda confused by them not being sure. Did they put you on ABX's? Are there any other LLMD's that you could go to. I would definately try to find one. Any other abnormal bloodwork? postive ANA, low CD57, did they test you for Lupus or any othe autoimmune diseases? I am glad that you ahve family support, and once you get a diag. it will also help you, if they are already being supportive that is adefinate plus. I thought that once I had a diag. that would help me with MIL, but I was wrong. My son has LD too, so he understands completely and he is so sweet and understanding, he helps me alot. He knows when I need my space and not to get offended if I am irritated or impatient. Keep searching for an answer, don't give up, Sarah

     
    Old 04-04-2007, 03:17 AM   #9
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    Re: Really strange question/symptom.

    I went to Jemsek. I was tested through Igenex. It came back negative with some questionable bands.I only have mostly neurological symptoms. My NP there treated me with pulse therapy for two months, but said that since it didn't phase it, it was unlikely to be lyme. I was never tested for coinfections, which is what I need to do next. Sorry that your son has it to. I'm glad that he's so helpful to you. Sometimes I wonder about my son. I know he got bit by something a few years ago that made a big ring. He has so many symtpoms of ADHD, Asthma, immaturity, etc. He's 15 and should be doing a lot better for his age. He's on a sixth grade level and should be on a 9th grade level. He tested negative for learning dissibilities. He's completely normal to there standards. His pediatrician says he will outgrow most of it. I'm not sure. He has medicaid, but Jemsek doesn't take it. We can't afford to treat me and him both.

     
    Old 04-04-2007, 03:11 PM   #10
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    Re: Really strange question/symptom.

    From what I have heard Jemsek is very knowledgable about Lyme, I'm sure he would have checked CD57. I don't know anything about pulse therapy. What results was he expecting? Did he suggest any other possible diag? You said that you wonder about your son. Did you son seem to have these problems when he was younger. My son was in a gifted program before he got Lyme, now he is going to be taking the 8th grade over again, and has been in pre-algebra for 3 years and still can't learn it. Math is the hardest thing for kids with LD to learn. His teacher in 4th grade thought he had ADHD, but I had him tested and took him to a psychologist who told me if he didn't have it in K-3rd grade he doesn't have it now. He just was in so much pain he wouldn't sit still in those hard seats and couldn't listen to the teacher because he was miserable. He started dealing with alot of anxiety because his teachers and coaches expected him to be the athlete and student he had been before, and they just assumed he wasn't trying, but for him he was trying his hardest and couldn't do the things he had done before, so he started having anxiety problems because no one understood. I know what you mean about the cost though, I am in the same predicament, I am off my ABX's because I can't afford to treat myself and my son, am on waiting list to see LLMD that accepts my ins.Luckily I have my husband to support us, so I don't have to work, so I am putting my sons health first, but he has already been diag. with LD. But if a person was the primary breadwinner in their family that would make it tough. I hope that who can find some answers, and I honestly hope that you don't have LD. Good Luck, Sarah

    Last edited by sarah92202; 04-04-2007 at 03:17 PM. Reason: Add on

     
    Old 04-04-2007, 05:03 PM   #11
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    Re: Really strange question/symptom.

    I'm not sure exactly what came back, but did the Western Blot through Igenex. It showed questionable bands. I did two months of pulse therapy which is two antibiotics 2/3 times a day 3 days a week. That was the first month. The second month went to 5 times a week with the addition of Flagyl for a week. I'm not sure that was strong enough since it wasn't everyday. That was the only test I had done, except for a sinus scan, chest ct scan, and ferratin and cortisol checked. I couldn't afford the secondary infection blood tests then. He is good, but I saw his NP. I really liked her and valued her opinion. Since I've went the last time, he had to get rid of all of his NP's but one. I am probably going back to see him again soon. Right now I'm awaiting the spinal tap to rule out benign intracranial pressure, and a few other things. Then I'm going back to him if it's negative. My son has always struggled in school. Even before the bite. He's a very slow learner, and has a very short attention span. He's very immature for his age. So it may just be ADHD.

     
    Old 04-04-2007, 05:20 PM   #12
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    Re: Really strange question/symptom.

    The pulse therapy sounds strange to me, but unfortunately I'm not a doc, so I have no idea, everyone seems to have been put on different ABX's. My son and I's LLMD, two different docs, prescribed the same ABX's for us, first my son was put on ceftin by his PCP, but when we went to LLMD he put my son on Biaxin and plaquenil, then added minocycline 3 months later, he said he was adding the minocycline for possible co-infections, but when tested my sons co-infections came up negative by Igenex. Thank goodness, but that could also have been because he had been on plaquenil for 3 months before tested for co-inf. Not really sure. My LLMD has prescribed the same ABX's for me exactly the same way. And the same dosage, which kind of scares me, because he is a kid. I am afraid of the effects of such strong ABX's on his liver. I don't know what to tell you about Dr. Jemsek's diag. The only thing I could think to do is have other LLMD look at the Igenex bands. I do know of a guy who was told by an LLMD that his Igenex report was neg. and he went to another one in another state who told him he had LD. Unfortunately this disease is a tricky one. How did you feel on the ABX's? Sarah

     
    Old 04-04-2007, 09:43 PM   #13
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    Re: Really strange question/symptom.

    I can relate to all the symptoms of dizziness and feeling faint as I have this and also pass out sometimes as a result. I'm also house bound.
    The problem is low blood pressure when standing with ensuing tachycardia. Sudden drops in blood pressure will actually cause fainting.
    Look up neurally mediated hypotension .
    This is a common finding with lyme and CFS. I'm not sure they are different diseases.

    A Tilt table test will give you some answers.
    Al

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    I don't come here often for that reason.

     
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