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    Old 04-01-2007, 09:38 AM   #61
    TeeDee
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    Re: Complications

    Hi Marsha, Mickie, Smylie, (JoJo where are you?),

    I slept pretty well last night without Trazodone but am pretty loopy and tired this morning. Another new and revoltin' development - my rear was sore and I thought maybe I'd bumped it sitting down (like maybe I'd hit the arm of my wheelchair) and then realized it was more than that. I have a BOIL kinda of thing like a big sore swollen carbuncle I guess. Yuck and sorry to be graphic. So tomorrow I'm going to see if I can get in to see my GP if I can arrange a ride to do so. Ugh. No idea what this is as I've never had anything like it.

    I'll also talk to her about the Ambien and if she prescribes it I'll tell the neuro to keep him heads-up. Guess I'll have to tell him about the rear end deal, too.

    BTW, the GP sent me a script for the hormone saliva test so I'll send for that, too. I'm hoping my insurance will cover it but who knows. Smyle, you were curious about Estriol. If you do a search, hopefully it'll take you to where they discuss it's safety in managing hormone levels when it's combined with progesterone (both seem to be safest when taken as "bioidentical" hormones). I haven't run across anything that touched on acne or rear-end carbuncles!

    Everyone have a wonderful Palm Sunday. My kids called yesterday and both mentioned all the tricks I used to play on them for April Fools Day. The most outstanding was when I woke them up early for school and told them that the McDonald's was on fire and we should go take a look. When we got there I said, Oh it's not on fire. Let's get an Egg McMuffin. It took a few minutes of stunned silence but one of them said "April Fool, right Mom?" I miss those innocent happy times. We all agreed we'll get them (and me) back!

    Prayers to all ,
    Tronni

     
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    Old 04-02-2007, 07:33 PM   #62
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    Re: Complications

    Dr Update

    Well I saw a different infectious disease dr today. He slammed my current lyme dr. Called him a few choice names. I kept my mouth shut. Wanted to hear what he said about me. I honestly think I knew more than him and he knew it.

    #1. He said that Western Blot (Igenex) results of ind were a negative. I said they don't say a negative. They list the other bands as a - but some of the bands they listed as ind. He says ind is not positive. Well if its not negative and the igenex lab results simply states that indeterminate is a band that is too weak to be a + 1 or above. Well dud?

    #2. He wanted to say that in 1987 they had no lyme test and I was diagnosed clinically. Just so happens I ran into the Dr that made that diagnois this week. He remembered me from then. He remembered when I got it, where I got it and that he had sent the test to Virginia and that it was positive. It was not a co-incidence that I ran into him just prior to my visit. After 15 or more years of not seeing him. He moved out of the practice I go to and on to bigger and better. But yet I saw him last week.

    #3. Babesia is not a NC thing. It may have crossed a few borders since 1987but I don't think it was here then. It is a co-infection seen up North. And yet he stated that most people have some babesia in their bloodstream and it just doesn't cause them trouble. Dud again???

    #4. He says that the bullseye rash I had back in June 2006 was a recent exposure. He saw the picture. He knew how to read a picture. I'm not sure he knew how to read the western blot bands. He wanted to know where the rest of the report was. He said he wanted to see what they said about equivacal. I was IGM negative and IGG 35 and 60 positive. He said that IGG was for recent exposure. Correct me if I'm wrong, but isn't it long standing infection. He saw the picture and assumed recent exposure. I do know there is some cross over and much debate over the IGM and IGG and how they read.

    #5. He said that he had only seen 3 cases that were contracted in NC. He ask me where I had been prior to the bullseye picture. I told him I had not left the state. Now I personally know 3 other people that have tested positive for lyme and 2 of them are sure they didn't get it from some other state. The other does most of his deer hunting in my area and has pulled many deer ticks off himself.

    #6. I ask him if 10 days of rocephin was enough to kill dissiminated lyme and he said yes. And he also thinks 200mg of doxy is enough.

    #7. He did alot of blood tests. Looking for I'm not sure what since I'm not sure he knows what to look for. He did say he was going to do a babesia stain (I think thats what he called it) More than the test results that I showed him. He thinks mine were not accurate.

    #8. I did question him about lyme causing demylinating disease and he was baffled. He wanted to get the Dr reports from Neuro Dr. (the one I am not going back to unless the 2nd opinion neuro I see in June tells me he was correct.) Remember hes the one that told me the radiologist didn't know how to read the MRI and made a mistake in saying that I had 9+ lesions and was positive under the MacDonald Criteria for MS. Hes the same one that couldn't find my lab results that he himself had ordered and the nurse had called me about the week before.

    #9. He did say my lab results showed they did a lupus test and my immune problem is not lupus. I'll wait until I see the Rhumatologist and let you know more.

    #10. My red blood count (all 3 different test done) were high. He looked at those and said well, I see you smoked. Well, I told him I have never smoked a cigarette in my life. Wonder if he know babesia affects the red blood cells??

    Ok lymies. What you think. I will wait for the results but I will go back to the one he called a quack that seems to know far more than he did. What you think of this one. I'll give him a week to get the results and then I'll get copies when I go to the Rhumy in 2 wks. Then back to the NC quack. The one that is the most caring lyme literate Dr I know of. But has lost his 20 yr house and possibly more. Because he chooses to treat us with respect and compassion and even more, he listens and learns and has to fight the system for US.

    Good sleeping to all. Now Mickie I'm going to go take enough to knock out a rhino. Smyle I am really wondering if my 4 separate shakes, tremors, relapses are related to babesia. And JoJo where are you?? Tronni give us a Dr report.

    Prayers....Marsha

    Last edited by Pearlscale; 04-02-2007 at 07:34 PM.

     
    Old 04-03-2007, 09:07 AM   #63
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    Re: Complications

    Hi Marsha-

    This guy sounds like a real winner. It sounds like you kept your cool, good for you.

    Makes you wonder why they all get so adamanat, I supposed ignorance is bliss...

    I still get those tremors, I can feel them right under the surface, and that buzzing plugged in feeling. None of it is anywhere near as bad as it was before. I have treated plain old lyme really aggressively and I had repeat of my cd57 done in January. It was up to 167, I think- close to normal healthy range, but I still have all these Babesia symptoms. I think they are related, too.

    I'm curious about your RBC's what is off? My MCV and MCH are low, my total RBC count is high- the Dr's think to compensate for the low MCV and MCH. Low MCV and MCH basically mean that my RBC are small and the color is not as good as it should be. My hemoglobin and hematocrit are normal and have no sign of the typical anemia. I have had extensive tests to find the cause -Thalassemia screens, g-6 pd defficiency- There is no clear cause for these issues.

    Hang in there, and don't let Dr's like this guy get you down. I believe what your LLMD says- this is the next tsunami. Just wait, this is going to have to come out soon and the fact that most main stream medical Dr.s want to deny it or label it something else is too bad for them. Some day they or someone they love will be affected with this and then we'll see...

     
    Old 04-06-2007, 02:30 PM   #64
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    Re: Complications

    Hi all,

    Nothing really new to report other than I've had a couple of really good days and I credit the weather. Global warming probably but we've had simply glorious days around Portland and I've been out digging in the flower pots. It renews my spirits and I feel myself coming out of this fog. I've been researching Esperanza Peptides and told both my sisters that we're going to the Bahamas as soon as I dig up the moolah. One sister has a bottomless pit for a wallet and it'll probably be just the two of us who go. I've already decided to call myself "Bahami Tronni" on their website when I tell about my miraculous recovery with Cobra venom. Right now my husband and I are thinking about finding a different house after looking into retro-fitting this one for wheelchair accesibility. I'm excited about the possibility of getting out of the prison I've been in for about the last 5 years.

    Wishing everyone a joyful and blessed Easter.

    Tronni

     
    Old 04-06-2007, 08:13 PM   #65
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    Re: Complications

    Bahama Tronni
    & Cobra Venom. Well, that will be a story I won't want to miss.

    Our temps have taken a nosedive. In the upper 20's tonight. Next several days highs in 50's and Easter Sunrise will be the coldest on record. Bring back the warm days. Enjoy playing in the dirt.

    Let us know how the house hunting/versus redoing what you have goes.....

    Have a Blessed Easter. All of you reading this thread.
    Prayers....Marsha

     
    Old 04-07-2007, 06:00 AM   #66
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    Re: Complications

    Hi girlies....

    Hope everyone has a Beautiful Easter Sunday!!!

    HUGS to you all.....

    Jodie


     
    Old 04-21-2007, 09:07 PM   #67
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    Re: Complications

    hi marsha.

    i was hoping you could give us a summary of where you are right now and what the latest news is with you.

    same goes for tronni, smyle, jojo, tinuviel, sleeper, deb, jamie, and anyone else my swiss-cheese-memory has forgotten.

    i hope folks can pop in and say how you're doing.

    we could start another thread, but i like this one. i'm going through such an awful horrid scary time that this post feels comforting.

    i loved hearing from jon. what a guy. i wish we could hear from ekim, jeanne, denise, and kim and gerri and cj and frango and some other "old timers".

    maybe our prayers for them will be enough.

    peace and health to all.

     
    Old 04-21-2007, 09:27 PM   #68
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    Re: Complications

    Hi Mickie-

    Why does your profile say your a man?

    We are on at the same time. I changed my name, do a search under my name and you'll see that I am one of the old timers...the one who shared all the balance and dizziness problems with you I hope you can hang in there- you will get better. Denise is doing great, by the way.

    I am treating Babesia with Zithromax/Mepron. I was off everything for a month. Let me back up. Anaphylactic reaction to the Rocephin in November. Off antibiotics for a month. Even though I had this reaction I had the picc in for 8 weeks and had 6 good weeks of treatment. I would do it all again tomorrow since I really feel it helped. Restarted Doxycyline at a dose of 200 b.i.d. for about 5 months. At first I felt like it was helping, then I felt it wasn't.

    Now I am loving the Zithromax/Mepron. It is kicking my butt, but at the same time I feel better than I have in a long time. Also, I am having some symptoms return that I had not had in a long time. They come and go so I can tell it is a herx and not a side effect.

    My disequilibrium is better on this combo. Can you give it another try?

    Smyle

    Last edited by Smyle; 04-22-2007 at 06:40 AM.

     
    Old 04-22-2007, 07:10 AM   #69
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    Re: Complications

    Oh Thank You for the good chuckle! I wondered why someone refered to you as a guy..

    MicBlues you truly need to get up out of that bed and do something for yourself. I would like for you to know it took almost 5 years of being on antibiotics and changing them all the time to different combinations...and doing picc lines before I could see any light at the end of the tunnel.

    The doctors know what is wrong with you. With me I had ONE doctor that went on clinical beings we couldn't get any test to say hey she's positive for lyme. You just have to get yourself back to the doctor and let he/she know you need HELP.

    When I was having days that were so horrible I couldn't drive, my doctor would do a phone consult. But sweetie giving up and giving in is not an option.

    To get your new life going you need to get yourself strong again. Taking medicine once in a while isn't going to help. And being pulled off the last time wasn't a good idea.

    Your doctor can only help if you tell her EVERYTHING you are going through.

    When I was living alone and had NO ONE I had a friend tell me. Get myself to a NA meeting during the day around noon. I wasn't hooked on drugs...BUT I was spending tooooooo much time alone and needed something to do outside of myself. It is just a thought...but maybe find any kind of social group to get yoruself around. Even if it is for an hour a day or once a week.

    PLEASE CALL YOUR DOCTOR TOMORROW!

    Sending you thoughts and Prayer's!!

    Hugs ..........


     
    Old 04-22-2007, 07:15 AM   #70
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    Post Re: Complications

    Quote:
    Originally Posted by Pearlscale View Post
    Summary: Sat night, chills sweats face numbness, shooting neck pain, nausea, horrible reflux and pain (every 2 hrs taking carafate to numb digestive tract) splitting headache. Then Sun morning 1 1/4 hrs of hard tremors.
    Mon still having relux chest pain, very light tremors. Call to my LLMD told me to go to PCP. By the time I got in to see her, hard tremors, splitting headache she sent me to ER at larger hospital next county over. Thought possible stroke. Cat scan ok. Potassium very low, liver slightly elavated. Had potass drip and oral, morphine, ativan and told it was all because of my potassium. See PCP in 2 days.
    Tues called PCP and told her. She wanted to see me. Potassium ok Wanted me to see neurologist. Set appt for Mon for neuro. Want me to see digestive health spec next week then called back. My liver had jumped from 60's last night to 162 this am. 12 hrs. Shes very concerned. Wants adbom ultrasound and moved digestive spec up to Thur.

    Not sure what is going on. Thought a brain thing now looks like a liver thing.
    Need prayers....Marsha

    Hi... i have a really severe case of Lyme and have all of those symptoms you mentioned on a daily basis.

    I wouldnt worry about your liver being in the 60's. I also have high liver enzymes...it has run as high as 200's or so...and its been that way since I have gotten Lyme.

    Have you had a Brain SPECT scan?? It will show if you have Hyperfusion (poor blood flow) and also encephalopathy...all that can be caused by Lyme. MRIs and CT scans usually only will show Lesions, or very noticeable white matter--its really not all that accurate for late stage lyme.

    I was diagnosed with a TBI ( Traumatic Brain Injury ) from Lyme disease, and the shaking is diagnosed as a Movement disorder from the Lyme/Babesiosis combination as well.

    I have heard IVIG is good for ppl with shaking/tremors/seizures...and my neurologist reccommended it to me...but my LLMD said that he hasnt seen it work well. But I am with a new LLMD now--so maybe I will give that a try.

    See an immunologist too, your symptoms sound a lot like mine...and it turns out I have an underlying immune problem (from years of undiagnosed lyme and co-infections)...my immune system is attacking itself....not the infection

    I hope you feel better!

     
    Old 04-22-2007, 07:39 AM   #71
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    Re: Complications

    Marsha....hoping your appt goes well tomorrow.

    Keep us all posted okay?

    Stay Strong and keep fighting...

    Hugs...


     
    Old 04-22-2007, 06:43 PM   #72
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    Re: Complications

    Guys or (Girls)
    I was just coming on to pull up this thread and ask how everyone was. Hadn't heard lately. Seems like our lyme bacteria are on the same wavelink.

    I had a bad fall yesterday. As if my body wasn't in enough pain. Waiting to see if my lt arm bone (between elbow and wrist) is cracked. Its kind of hard to type this in a spint. I tripped over a stepping stone in my backyard. I was dizzy all day yesterday. My equalibreium (sp) just wasn't right. Still not. It happened so fast, so not sure if it was from being a little off kilter. When I fell, I hit the side of our castlerock pond which is about 18" above ground. My lt arm hit it rock edge and the rest of me either hit the ground or the castlerock. I am pretty achy. Scratched and bruised.

    Just to let you know, I ask for a copy of my MRI report from a month ago. Got it this week. It said, I have 9+ lesions (it told where) and that 2 were demylinating with contrast. (only had 3 when MRI done 4 yrs ago) I meet the MacDonald Criteria for demylinating disease (MS) My neuro thinks the report is wrong and he also thinks that the demylinating is from lyme. So I have an appt in June for a second opinion. I see my LLMD tomorrow. I plan to take the film with me for him to see also. I'll show him all my file. I have lab reports, MRI report, films, and ANA results (positive) which is up from 3 yrs ago. Not sure how it will compare to his (if he did one)

    Will let you know what I find out. Got to stop, arm hurting.

    Hope others will chime in with report. And Blues, think positive.

    Prayers.....Marsha

    Last edited by Pearlscale; 04-22-2007 at 06:46 PM.

     
    Old 04-22-2007, 07:13 PM   #73
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    Re: Complications

    Marsha-

    So sorry about your fall... after everything else that you've been dealing with. It is good that you are seeing your LLMD tomorrow. Maybe he will have some insight. I met another woman who lives here (MN) who sees your Dr. She said the restrictions are lifted in June.

    You may have seen what I put in another post about a man I heard about who was diagnosed with Parkinsons at 29. He had had a tick bite and a bullseye rash 6 months before this so he was very suspcious that what he actually had was lyme. He was on antibiotics for 7 years and is now completely symptom free of a supposed incurable,chronic, degenerative neurologic disease.

    Stories like this give me hope for all of us. Let us know how it goes tomorrow.

    Smyle

    Last edited by Smyle; 04-22-2007 at 07:13 PM.

     
    Old 04-23-2007, 07:15 PM   #74
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    Re: Complications

    Oh Marsha! I am so sorry to hear about your arm.

    Our poor bodies are already feeling boo-boo all the time, and to get another big boo-boo on top of it all - well - I feel for you.

    I fell once, got some scrapes and bruises. I frequently bump into door jambs and walls and door knobs and cabinet handles and I usually have bruises all over my legs and arms.

    Hang in there. I hope it's not a full break. Do you think you'll need a full cast?

    Peace and health to you!

     
    Old 04-23-2007, 09:37 PM   #75
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    Re: Complications

    Hi All
    To give you a brief update. Saw my LLMD (Jemsek) this afternoon. Looks like I may be traveling to see him long distance later this summer. He is planning to move. Possibly DC/Washington Area. Can't blame him, with the way the NC Medical Board is treating him. But it is going to be difficult to see him.

    I explained what had been going on with me. He saw my Brain MRI film and the written report. I ask him if he agreed with the report. Did he see the lesions. He said oh, yes and he agreed with the report. It states demyelinating disease meeting the McDonald Criteria of 9+ lesions (mine are in the deep hemisphere white matter and more lesions are seen on the T2 axial images. There is one lesion in the right cerebellar hemisphere. At least 3 of these lesions (sm) enhance, meeting the McDonald criteria for demyelination. I let him talk. I did explain that my neuro had said that he thought the demyelination was from lyme disease. Which really surprised him. I didn't tell him that he also said the people that read it were crazy, there were not lesions. They didn't know how to read the film. The report was wrong. Interesting that Dr Jemsek read the written report and then looked at the film and agreed with what he read and saw.

    I explained my tremors, all the other problems, low potasium, elevated liver, high ANA, High red blood count. All the many things that had been going on.
    He diagnosed me with Dysautonomia. Basically an inflamation in the base of the brain he thinks from the last round of babesia and lyme treatment. He says, we have not gotten the lyme or babesia. We have to work on babesia when I get better. But for now, atleast the next 2 to 3 months, I am to take no abx, try to jump start my immune system again. Push the magnesium, up my neurontin ( and still try to function) add Lamietrel (sp) for the seizures. Add alot of supplements back to my daily routine. He said we have to get my brain back to normal. He says its not there yet. He thinks I'm still having drainage from the brain through the brainstem causing problems.

    What a tangled mess.

    My arm hurts, I a little discouraged right now. Make that alot. My second opinion neuro isn't until June. Thats a long time to wait. I know I need to rest, but tomorrow I need to take my elderly Aunt to have her clotting time checked. And she will expect a visit. Theres a lady in our Church that has terminal cancer and I feel I need to go see her.

    Today and yesterday was running and i'm soooooooo tired. Going to bed. Talk to you all tomorrow.
    Prayers....Marsha

     
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