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Old 03-09-2009, 09:46 PM   #1
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hanelo4 HB User
My Lyme test results

I am very upset that my test came back like this. In my opinion it should be re-done if there is more than one Ind. Anyway, here it is.

Lyme IGG Western Blot

18 kda -
22 kda -
**22-25 kda IND
28 kda -
30 kda +
**31 kda -
**34 kda IND
**39 kda IND
**41 kda ++
45 kda -
58 kda +
66 kda -
73 kda -
**83-93 kda -

On IGM only bands 41 and 58 were positive with one starred band.
The weird thing about this is that when I took the Lyme test two years ago, the IGM had more on it and the IGG had less. It's flipped now. What do you all think?

P.S. - I've also had past viruses like Epstein barr, cytomegalovirus, herpes simplex 1(which is a fever blister), and I now have HHV6 which is active right now. Most of these cause mono-like symptoms. Blah!!

 
Old 03-10-2009, 06:07 AM   #2
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Re: My Lyme test results

Chantel,

I am sorry that you are upset about your test results.

Is the doctor basing Diagnosis or Treatment on the Test?

I am sure that you are aware that Test results don't mean a hill of beans as far as how Sick a lyme patient actually is. As I'm sure you know it's common to have EBV, HHV6 et al with lyme as we become susceptible to so much one the bacteria enter our system.

My sister was only positive on 1 band in her most-recent western blot,
yet she has dystonia, dysautonomia, progressive encephalopathy etc etc.

Currently: disabled

all from advanced Lyme disease. The doctor is having a PICC line inserted and she's gonna be taking IV Rocephin.

IF you have a doctor that diagnosed lyme CLINICALLY---as it's meant to be with what little is known about TBDs at this point in history -- then that is all you need.

Is a doctor refusing treatment based on the results?

 
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Old 03-10-2009, 03:45 PM   #3
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Re: My Lyme test results

Hi 22dreams Im so sorry about your sister but very glad she is getting help. Sometimes I really cannot believe how little some doctors know about this disease.

The reason I was so upset about my results was because I wanted to prove to some people that I was really sick. I know I shouldn't be focussed on that but I finally wanted to say, "you see, I really am sick!" I guess I need to let it go though. I hate it when people act like there's nothing wrong or change the subject when I talk about it.

I found an LLMD that does want to treat me. He thought I had Lyme 2 years ago but I decided against treatment because I didnt know enough back then. I will be seeing him again next week. He actually had Lyme disease so I feel confident he will treat me the right way.

I sure hope your sister feels better soon. Do you have Lyme also?

 
Old 03-11-2009, 06:19 AM   #4
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Re: My Lyme test results

Thanks for your sentiments, Chantel.

I totally understand the feeling/desire of wanting to hold up a piece of paper and say "see, I have a disease" as there are many naysayers out there.

You are not alone, in my sister's lyme neurologist's waiting room this week, a woman who had flown up from VA (to MA) for treatment stated that her parents think it's all in her head. Family, co-workers and friends who don't understand like they would if we had cancer or some other disease.

One of my sister's doctors stated the other day that we are in such very rudimentary stages of understanding the disease(and other Tick-borne diseases) which is quite astounding considering the time that has elapsed since the so-called discovery of it in the mid-1970s and isolation of the bacterium in 1982. Anyway, you know the politics surrounding LD. So the lack of research is deplorable.

Anyway, so yes, I have neuro lyme (not an arthritic strain)--

which has CAUSED: Hashimoto's, CFS, vitamin/mineral deficiencies/syndromes galore.
Just 4 years ago, I had a full panel done of all this and everything was not only normal, they were excellent. My doctor even stated my "real age" was like that of a kid.
Yet, lyme was already brewing then as the fatigue had set in.

My symptoms are mild right now compared to others, thank God and I hope to keep it under control. of course, that depends on insurance etc.
I can and do work although marginally some days as the cognitive issues are difficult to hurdle sometimes. But I am very, very, very fortunate in all this even though I didn't catch it "at first bite".

The challenge in all this for many patients with any disease, or in any difficult circumstance, is to believe in ourSelves. Our inner strength & resilience has to compensate for what is happening in our bodies to get us through.

Hang in there, Chantel. I hope this doctor can help you!

 
Old 03-12-2009, 11:32 PM   #5
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Re: My Lyme test results

Hey again 22dreams. I'm glad you responded. I've researched Lyme disease a whole lot but I can always learn something new from someone whose been through this illness. So thanks for that.

I too also have Hashimotos, vitamin deficiences including low vitamin D and my internist thought I had CFS and Fibro. I get extremely fatigued and it's really hard to explain to my family. It's like the fatigue is so strong, I can barely move let alone think straight. I'm wondering if it isn't that virus I have right now?

I was kind of like you last year. I even went to college and finished with a 3.9, although the class was only 5 months. I had to push myself real hard though. I definitly would not be able to do it now. I still think it was one of those viruses I had that set everything off though.

I try so hard to believe in myself but when I'm having a bad day, it's hard to do. I don't like neglecting my family and my youngest daughter is at that stage where she really needs me to be there. We just had a talk though and I'm hoping we can all get through this. I had a better day today and helped her bake cupcakes for school. You don't know how good that felt. I'm just realizing now how much has been taken from me since all of this started. It means so much for me to be there for my family and I want that back.

I wanted to ask you how you knew you had neuro Lyme? I had a bunch of weird brain symptoms after taking amoxicillian like brain fog, anxiety, depression and slow thinking, not being able to remember words, etc.

 
Old 03-13-2009, 10:50 AM   #6
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Re: My Lyme test results

Chantel & 22dreams, ((hugs to you both))!! Have either of you or others you know (who are fighting Lyme) tried the clinics in GA or KS? At another internet board, some gals are up to 90% improved due to the GA clinic. I just received the book written by the doc in KS and my ill daughter is impressed! She is working with an LLND right now but I'm hoping she can go to KS. Send me a PM if you wish for more details.

 
Old 03-14-2009, 06:01 AM   #7
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Re: My Lyme test results

Quote:
Originally Posted by Chantel2003 View Post
I wanted to ask you how you knew you had neuro Lyme? I had a bunch of weird brain symptoms after taking amoxicillian like brain fog, anxiety, depression and slow thinking, not being able to remember words, etc.
well, as you know, most symptoms come-and-go and morph, and new ones come up --

Neuro sx:
penmanship issues, word-find, sporadic dyslexia, word-substitution
(way off the mark), concentration, host of cognitive function stuff. "slow thinking" included. I used to be crackerjack so this is a marked difference and an issue that a friend noticed the other day (having not emailed me in awhile).

Electric shock pain, "internal vibration", vibration (mouth), jerks, spasms, numbness, bell's palsy.

I only get spasms now when I don't sleep enough or have a particularly exhausting day.

I have "emotional" herxes -- bouts of irrational emotion(anger), this week depression/anxiety.

Last September I was having the emotional bouts while not on any sort of treatment.

The cognition problems and fatigue are omnipresent.
I am realizing Fatigue doesn't affect all lyme patients.
The fatigue, in whole or in part could be from all the deficiencies and Hashimotos....

Has your treatment for Hashimoto's helped improve your fatigue or other symptoms at all? I haven't been on Armour all that long....

 
Old 03-14-2009, 06:53 PM   #8
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Re: My Lyme test results

Hi Renae How are you? No, I've never heard of those clinics. Are you and your daughter going to try and go there? Do you both have Lyme?

 
Old 03-14-2009, 07:13 PM   #9
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Re: My Lyme test results

22Dreams How are you feeling today?

Thanks for explaining all of that. I am still learning. There is still so much to learn about this disease and it seems when you think you finally know everything, you get more surprises.

I only have a few neuro symptoms compared to you and it's nothing compared to what you go through. Although, sometimes I feel like I'm crazy or dying when it happens. It
can be very scary. I have concentration problems, forgetting easily, can't think of the right word to say and it takes me a while to figure it out and sometimes I can't. My husband usually fills in the blanks for me, LOL. I have the emotinal
outbursts too and I get extremely angry for the littlest thing. I
feel like I cannot control it. I also have depression and very
intense anxiety especially when I'm on antibiotics. Those two
are a little better though. I have the vibration feeling in my
legs really bad and in my lips. My left cheek always feels funny
like it will go numb but never does.

I too have extreme fatigue to the point that I cannot move/function. I'm on Armour also and have not noticed a change in the fatigue. Of course, I don't take my medication like I'm supposed to because I get really bad episodes of fast heart beat everytime I do take them. But, even when I was
taking them everyday(that was over a year ago), my fatigue
was still very intense. I have an appointment with my doctor
to see what's going on with the fast heart beats. My thyroid is
low right now (7.5), and I still have the fast heartbeats. I read
somewhere that if your adrenal glands are not functioning right
it can cause fast heartbeat when you take Armour. Not sure how true that is but I want them checked.

Anyway, I hope you're feeling better today. I had a bad night last night. I was put on 500mg of Levaquin for another bladder infection and think I herxed again. My whole body was stiff and I could barely bend my fingers and elbows. My knees hurt too.
I was about to go to the emergency room. I really hate this
part of the disease.

Last edited by hanelo4; 03-14-2009 at 07:33 PM.

 
Old 03-15-2009, 09:00 AM   #10
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Re: My Lyme test results

Hi Chantel,

I'm sorry you are so bad off! emergency room?!?!!

Thanks for sharing, I don't have much time to respond right now but wanted to address adrenals/thyroid.

It's true, if you are suffering from adrenal fatigue, thyroid medication can flatten out your floundering adrenals. It can exacerbate fatigue so much that one can wind up bed-ridden, among other symptoms.

My LLMD had my adrenals tested before treating my thyroid--
(with a saliva test)--and even though very low --
they do have a rhythm of their own (not flat lined)--
so she felt it was safe to start me out on a low-dose of Armour.
I want to protect my thyroid gland at all costs, needlesstosay....

I'm wondering what Detox measures you are taking?
Believe me, I know how difficult it is trying to do just Abx and supplement regimens nevermind incorporating another......

Gotta go---hang in there!

 
Old 03-16-2009, 01:02 AM   #11
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Re: My Lyme test results

22Dreams, I'm wondering why my endo didn't test my adrenals before he gave me Armour? I even mentioned the fatigue and asked if it could have been my adrenals. He said I didn't have any of the signs like sunken in eyes, brown blotches on skin/side of face. I do have other symptoms of it though. This all makes me so angry. I've already self diagnosed myself twice and wound up being right. Sad thing is that it took 2 years both times for the doctors to finally test me and give me a diagnoses. The first was my thyroid. The second time was that I knew I had Hashimotos. I knew my thyroid was not supposed to be swollen again. I had even asked my GP if he had ever heard of the thyroid swelling after being diagnosed with
hypothyroidism and he said it was rare. Rare!?! Can you
believe that? I finally went to my 3rd endo that examined me
totally different from anyone else and felt the swelling in my
neck. Did an ultra sound and found noduals too. Duh! My GP
had waited so long to check my thyroid even after I told him I
was cold all the time, that by the time he ran the bloodwork I
was 12.45. Yep, I felt like complete crap!

I've always wondered if Lyme had anything to do with my immune system attacking my thyroid? I wonder if it has
anything to do with my low blood sugar too? No one in my
family has thyroid problems although my brother has high
blood sugar. I guess we will never know.

About the detox. Right now, I've only taken powdered vitamin C to clean me out so far but I do plan on getting Epsom salt
and either baking soda or hydrogen peroxide. I'm definately
gonna do one. I'm on Levaquin for a bladder infection and I
think I'm herxing again. My mind went coo coo today so if I sound like I'm all over the place, that's why. I was forgetting a
lot and doing weird stuff. Had a bout of rage too. This is just
not me. I hate it!! I hate to see how I will be when I start the
stronger antibiotics on Thursday. Well, probaly Friday since I
will be at the LLMD's all day.

Anyway, sorry to blab. I am just so out of it and not myself lately.

Last edited by hanelo4; 03-16-2009 at 01:09 AM.

 
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