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    Old 10-04-2013, 07:08 AM   #1
    Mamamo
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    Lyme Diagnosed in spring.

    Hello everyone:
    New to the forum. I was diagnosed with lyme this past spring . Have had ongoing issues since 2006...they stated I had conversion disorder . Multiple tics and manifestations occur when my body is overstressed. I have light sensitivity, sound sensitivity, electric shocks throughout, myoclonus, IBS,non-epileptic seizures, fatigue, flu-like symptoms, joint pains. My western blot via Igenex showed a positive IgG. I know this means it has been in my system for a while. God knows how long. I was exposed to a tic in 1996 but no rash at that time..I wish I was more lyme literate then and I would have gottent the doxy then. My symptoms wax and wane. Some days I can do my routine house work etc..other days I am weak and flu-like. I am seeing a LLMD in the K. area of Maine. He is a DO. I am on ABart, ALyme (Byron White formulas), as well as brain detox, whole body detox, chlorella, lumbrokinase, and "routine meds and supplements". I just switched primary docs..she does not believe I have the lyme. I just moved to this area a couple of months ago and my primary in my old location went along with the lyme diagnosis. So, luckily someone in my support group told me about another pcp that was more lyme friendly..Waiting for my cd57 to come back. I know it must be low, I always feel sluggish..time will tell. Hoping to get back to a somewhat normal state to be able to return to work..Have had various jobs since I left the respiratory field..have had relapses and could not continue to work..So, time will tell. Feeling like another "cold/flu" is hitting me again. Chills, and tics, neck pain..I also have hemochromotosis...iron builds up in the system too much causing joint pain and fatigue. This is why I am stopping my antibx for now. Just diagnosed with this disorder. Want to see if some of my symptoms improve with the phlebotomies and once my iron levels improve.
    Time will tell....

     
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    Old 10-04-2013, 01:28 PM   #2
    dee7721
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    Question Re: Lyme Diagnosed in spring.

    Hi, Mamamo,
    I have late stage Lyme, same symptoms since 1989. I've not been treated as of yet, but have an appointment in 2 months w/a LLMD.
    I, also, was in the medical field, and have not been able to work since 2002.
    I'm interested in what you said about "brain detox." What are you taking for that, and what does it do? Is it working for "brain fog," or something else that you are experiencing? My cognitive function is very low @ times, to the point that my family thinks I'm retarded! Lol, no joke I s'pose...
    Also, do you have any white matter lesions? At first, I was dx w/MS due to the lesions, as well as atypical seizure activity. Sad that it's taken me so long to find a doc who put 2+2 together, and had me seek out a Lyme specialist. Speaking of 2+2, I have to use my fingers these days, to add, subtract, balance my checkbook, etc. It's too much of a bother to use a calculator!
    Anyhooo, I hope your iron levels improve soon! I also hope that going off abx doesn't cause your symptoms to flair again.
    Wishing you well!
    Dee

     
    Old 10-04-2013, 02:00 PM   #3
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    Re: Lyme Diagnosed in spring.

    Hi Dee:
    I am on herbals now. They wanted me off the antibx until the iron levels got down and then go from there. They feel I have bartonella because of my neuro stuff. Extra sensitive to light, sound, non-epileptic seizures, gibberish speech, rapid eye blinking, electric shocks, myoclonus, twitching, facial drooping at times, etc..I am on ABART, ALYME (Byron White formulas). Also, Brain Detox and Whole Body Detox tinctures. Only my LLMD has access to these. You cannot order on the web. If you do have the lyme or bartonella you will have an initial reaction to these formulas (like a herx)..I did. You have to build up slowly over a period of time. I start with 2 drops in 20 ml of distilled water twice a day the first week and then add another drop the following week, keep doing so each week until 20 drops are reached. I was on doxy, then switched to ceftin and minocycline. These were stopped when the hemochromotosis was discovered. They want my iron to get down and then restart them. I too was wondering if I had MS initially. My MRI was negative for plaques. However I do have a meningioma. They will be watching this as well. Good luck with your treatments. I hope something works for you.

     
    Old 10-04-2013, 03:35 PM   #4
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    Re: Lyme Diagnosed in spring.

    Hi, again!

    I lived in the deep tropical jungles, as my folks were missionaries there. I was a missionary kid from 10yrs old to 19yrs. I came back to the U.S. in 1975, after being dx w/malaria, dystentery, & God only knows what else. I most likely have bartonella, as well as a few other co-infections, that need to be treated, as well as the Lyme critters!
    I've been on so many antibiotics over the last few years, & had "allergic reactions" to every one of them. If I had only known, that this was because of the short term, high dosages, caused the critters to cause havoc in my body!
    Well, have to run, and take care of my Mom, as she is preparing for triple bypass surgery, and is very weak. Her heart is functioning @ 20%. I just wish I felt well enough to do all the running around that is required of me, as i am the only sibling out of 5, who has experience. Therefore, the burden is on me. Sadly, my other siblings aren't very helpful. My sister lives next door to us, (I moved in w/Mom when my Dad passed in 2010) but my sister has been diagnosed with Lupus, and has pretty much resigned herself into believing that she will die of this. SO, she has been in her recliner for a few years, and weighs over 400lbs., which makes it almost impossible for her to help.

    Oh, well, I s'pose I'd better get dinner ready, then start running errands. What I'd REALLY like to do, is to lie down for a while, as I don't sleep well @ night. I'm so tired of the myoclonus, the severe ringing in my ears, startle reflex, and all those nasty effects of Lyme. SOON, I keep telling myself, I will be treated by my LLMD. Hopefully, he will have a cancellation, and get me in sooner!
    I'll stop complaining now, lol. Sounds as though you have enough on your plate as it is!
    God Bless,
    Dee

    Last edited by Administrator; 10-04-2013 at 03:51 PM.

     
    Old 10-05-2013, 05:48 PM   #5
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    Re: Lyme Diagnosed in spring.

    Dee:
    My goodness! A lot on your plate as well! I just buzzed my brother to the hospital ER the other nite due to his ongoing health issues and increased anxiety and depression...he has a brain tumor on his optic nerve that has enlarged and now he has no peripheral vision. They have no money coming in and he has been waiting for soooo long to get his disability decision..emotionally he needed help. He is now in a behavioral unit. I have been through this myself around 2006. Ongoing seizures and depression. It was a very dark time for me. Thank goodness the behavioral unit I went to saw that I needed cognitive therapy and would not let me leave till they found the right therapist to help me. At that point they all thought I had brain conversion disorder..and unfortunately some folks still label me with this versus the neuro lyme. They think I work myself up into a tizzy so to speak and then all my manifestations occur ...I keep telling them the lyme does it!! They don't get it...

    I hope your mother's surgery goes well. I have a 87 yr old father that I worry about as well. I try to make it to his place as much as possible to help him if need be..He is very independent right now but still I worry..He lives alone. I live over an hour away. I have a cousin that checks in on him off and on and another brother that does as well. Thank goodness. It helps to have the family support. When your mom comes home can she get any agency to help a bit to take the pressure off of you? Like a home health aide or personal support specialist? I would hope if she has insurance they could help cover some of these services ..Just a thought, or maybe if you are affiliated with a church they may have members that may be able to help out if needed. You mentioned your parents were missionaries. That is wonderful they gave so much of themselves but that is too bad that you were exposed to these illnesses. I was in Africa for a very brief time while my cousins lived in Senegal. They showed me around a bit. My cousin helped with the centers for disease control by inoculating mothers and children and others I am sure.. Needless to say somehow I got exposed to something and I had "the trots" for over a month...not good...
    Well, I too must get going. Take care and I will be praying for you all.
    Blessings.

    Last edited by Administrator; 10-05-2013 at 07:33 PM.

     
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    Old 10-07-2013, 06:18 AM   #6
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    Re: Lyme Diagnosed in spring.

    Hi Mam,
    I'm sorry to hear about your brother. : ( I hope he gets the help that he needs. I'll be praying for him, as well as you, too. Thanks for prayers and compassion!

    Isn't that just ducky, how most docs (even friends or family) draw that conclusion that "it's all in our heads?" It can be frustrating.. I'm learning that it doesn't matter what other people think, but still working on the frustration and hurt, when it comes to my own kids & family. That's a tough one, but the Lord's helping me with that one, as well. My 19 yr old son is very "disgusted" with me, and my seeming "stupidity." Funny, my IQ (well, before all this started to get worse, lol,) doesn't seem to matter @ this point. He remembers me being smart and funny, & thinks that I'm ready for a nursing home! No joke! I suppose, being "gifted," he expects me to be able to hold a somewhat intellectual conversation with him, and others, as I used to. He seems to be taking what his father says about me, to heart, which is so sad. I left his father (with my children) in 2003, due to his abuse and mental illness. It took quite a while for me to see that I needed to get out. As a "Christian" I always thought that I should stay, and be an good testimony to him, and continue to pray that he would see that he needed to be back on meds, which had helped him for several years. It wasn't until he started to abuse my kids, that I saw that it was time to leave. I married him in 1994, went through much with him...counseling, psychiatric help, supporting him through it all, but at the same time, enduring abuse toward me (physical, verbal, and emotional.) He was hospitalized several times, mostly by his psych docs, a few due to me calling out for help due to fear of his threats to kill me. In the first 6 yrs or so, the kids, I thought, were mostly oblivious to it, as it mostly happened when they weren't around. But as it turned out, kids are smarter than we think, and they knew their Mom was not the Mom she was before marrying him. I have 4 kids, 3 of which I had before marrying him. The older 3 are very supportive of me, and very loving. My oldest, Steve (33), believes that most of my problems are due to what happened to me during that time I was with my husband. He doesn't understand Lyme Disease, either, but is trying. He's a scientific, logical thinker, & just can't wrap his head around the fact that there is a condition that can cause all these symptoms. I'm sure you know exactly what I mean.
    I meant to ask you....what are you taking for brain detox, and is it helping? Have you had your iron levels checked again?
    It's going to be a rainy day here in S.E. PA, and my head is spinning from a migraine coming on. Ouch! My vision is starting to go wonky, as I get double vision & severe "floaters" & visual auras during this phase. Soooo, I'll wrap it up now.
    It was so nice to hear back from you!
    Hugs & Prayers,
    Dee

     
    Old 10-07-2013, 07:45 AM   #7
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    Smile Re: Lyme Diagnosed in spring.

    Hi Dee:
    Hope all goes well with you today. I remarried 10 yrs ago and we have 8 children between us. They all seem supportive but sometimes I think they don't fully understand neither about the illness. I went through an abusive first marriage..alcoholic..emotional abuse. My children now understand as adults why I divorced their father. They are all throughout my home state of Maine. Where do you live?
    As for the brain detox, my LLMD has me on tinctures. I am on two Byron White formulas: ALYME and ABART. These tinctures are very strong and one has to titrate from 2 drops twice a day in 20 ml of distilled water and then increase by one drop each week as tolerated until 20 drops are achieved. He also has me on a Brain Detox tincture and a Whole Body tincture...15 drops of each mixed in with 20 ml of water (separate doses). I take those twice a day as well. All of these tinctures must be taken 20 minutes a part. I am also on king chlorella, fish oil, probiotics, magnesium, vit D3, multivitamins and my celexa.
    I hope all goes well with you ...will keep up the prayers!! Blessings..
    Maureen (Moe)

     
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    Old 10-26-2013, 05:23 PM   #8
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    Unhappy Re: Lyme Diagnosed in spring.

    Hi, Moe!
    I'm sorry it's taken me so long to get back to you. I hope and pray all is well with you!
    Thanks for sharing about the brain detox!
    I live in Lancaster County, PA (Amish country.) The closest LLMD is about one and 1/2 hours from me (depending on traffic.) I can't get in to see him for about 2 months. It's worth the wait, as he doesn't require positive markers to see a pt. As well, he charges on a sliding scale. The down side is that I'm really having a tough time with my immune system. I'm sick right now, with a sinus infection (chronic,) bad sore throat, w/pus filled bumps and blisters, fever, and now developing a cold. My PCP says it's viral, and I don't doubt it. I get this often. I know it didn't help, having a flu shot last month. I've been told that we "Lymies" should NOT have the flu shot, and it could exacerbate symptoms for up to months.
    My estranged husband decided that he will work out an agreement with me, and supply alimony & medical insurance for another 2 years, as well as paying me back all the copay amounts over the last 2 years. ($8,500) I'm not sure if I'll accept it, but it seems as though his house is not sellable at this time, due to the fact that he just bought it 3 yrs ago, and it would sell for less than what he bought it for. So much to think about there.
    I just got the book "Compendium of Tick-Borne Disease, a Thousand Pearls," by Dr. Kathy Spreen. Wow, quite a lot of info in there!! Do you have it?
    My daughter, Mandi, just separated from her abusive husband this past week, and she and my grandson, Drew, are staying with me, my Mom, & my 2 youngest sons. I've been helping her through the process of getting help, legally, financially, etc. It's a bit chaotic around here, but we're managing. It's so sad that she's going through some of the things that I went through. Her husband hasn't been physically abusive, but extremely controlling, and mentally and emotionally abusive. My poor little Drew has seen and heard so much, and tells me about how upset he is with Daddy. She's doing the right thing, but it's hard for her. She's been told, by her counselor, not to engage him in conversation and texting (he is living in Philly,) but she responds to his angry texts and phone messages, thinking that she can "quell him down." It's only making things worse. He's threatening to take away her car, which was supposed to be in her name by now, as well as other threats. I had her call the domestic violence clinic, as well as a legal advisor, on how to proceed from here. Been there, done that. I know all too well, what it's like to second guess your decisions, and how hard it is to keep in mind WHY you've chosen to leave. She has moments when she only remembers the good times, and that's normal. Although, in her marriage, there haven't been many good times, as there had been in the beginning of mine. SO sad..
    Well, I need to go help with my grandson now, so I'll get back to you later. My daughter is emotionally exhausted, and having a tough time dealing w/him being sick & needy @ this time. She's in counseling, but I think she needs more intense counseling, poor girl.
    Prayers continuing,
    Dee.

     
    Old 10-26-2013, 06:43 PM   #9
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    Re: Lyme Diagnosed in spring.

    Well Dee it seems like your whole family is going through a real rough spell. It is just my husband and I in the home now. We did have my 2 sons and a "tenant" renting a room from us..then bit by bit they couldn't afford to pay us..losing jobs or whatever. We decided to move to a more affordable place and rent out the home to 4 college kids for now knowing that the mortgage will be covered. I am so glad we made this choice for now. Too much drama at times..got me more upset and anxious at times...didn't help my symptoms at all. I am healing better now (several months since they left) and I am ready to try to re-enter the work force part time. I only want a small part time job to try to catch up on ongoing medical bills,etc...When I divorced my husband I told him to have the house and everything that went with it. It was a very old home and needed so much TLC that I couldn't picture myself fixing it up without demolishing it or hiring someone that I couldn't afford. Needless to say he hasn't done a blessed thing since we separated in 2002. The same curtains are in the windows!!! Cobwebs and all!!! My kids are so disgusted with him..they know he is slowly killing himself by drinking himself to death. They need an intervention. Hopefully somebody can get through to him. I feel sorry for him. He is a nice person but is stubborn too...time will tell. That's too bad that PA doesn't have a LLMD closer to you but it will be worth the trip. I actually have to drive about 2 hrs to see mine now. Hopefully you will get the right treatment Dee. Hang in there. In the meantime try detox baths and a diet which is gluten free, dairy free, and sugar free (processed sugars) as well as minimal night shade veggies..such as tomatoes. I have been gluten,dairy, and minimal sugar for over a year and a half. It has helped my IBS issues a lot. LLMD's feel that these foods feed the bacteria moreso. The detox baths can be taken with epsom salts or baking soda. I enjoy them..helps to soothe and relax those stressed out areas...Lemon in water too helps..Extra vit c. Take care.
    Moe

     
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