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 Post subject: shoulder pain
PostPosted: Tue Sep 09, 2008 5:34 am 
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Hi, I was wondering if anyone else experiences shoulder pain? And as far as the herxes, could it just be extreme fatigue and an increase in pain? I am new to this forum and can't get in to my LLMD until mid November. Everything came back good on my bloodwork except my strep titer was high. (son had strep, i NEVER had rhuematic fever), my Lyme test came back showing only a few bands positive. Infectious desease specialist said 6 weeks ago that my pain had nothing to do with the strep titer being high and all my symptoms seemed like Lyme. He put me on 2 rounds of Doxy(200mg) and when I went to see him last week for my follow-up and I still have symptoms he didn't know what to do with me so gave me 3 things i could have.
1. post lyme syndrome
2. vitamin d deficiency(didn't have that tested)
3. strep arthritis(i guess he changed his mind from first visit....strange, huh?)
I had a rash LAST(2007) September on my upper stomach. It was a bit blistery and red and a definite circular outline. My mom and friend thoght I had ringworm. I never went to the Drs. because I hate to so eventually the rash went away. It took a long time though. Sometimes it would go away and come back until finally it disappeared. Over the year I had strange symptoms. Her is my list:
September: rash
January: extreme fatigue and right foot twitched for a month
February: flu(actually went to the Drs and tested positive for it)
March: stomach flu...with horrible aches..worst ever..no one else in the house got sick.
mid April: strange tendonitis in wrist...no injury, painful inner index finger, inner ankles got sharp, stabbing pains, no swelling, heel pain almost all the time, left shoulder started hurting. like a hot poker or something. no morning stiffness, in fact i feel better when i wake up, groin pain on right upper thigh(kind of inner thigh), middle finger feels like muscle pull(no injury) actually hurts and is weak when i open a juice bottle for my kids.
And so it goes...went to the dr...thought i was getting RA or something, ran all the tests, neg lyme although some bands pos., strep elevated, everything else was picture perfect. ended up at infectious disease specialist, i think he was shutting the door in my face last week. i felt really tired and my pain increased at the begining of doxy and at about the end of the first month. energy back a bit by mid month but pain is still there.(2 weeks left of doxy)
just a little insight--i have 3 labradors(one sleeps with me), my son had Lyme in May,seems like I know atleast 5 people on my block that have had it, i live in CT.....any thoughts....I have a couple months to wait, will be off meds, and am seeing a naturopath on saturday...ps-took epson bats and had to stop...they were painful!
thanks for any insight...i feel like a prisoner in my own body and look fine to go to work etc....but missing out on life....i just want to get back to being a mom and feel better and stop worrying...it has really taken a toll on me!!!! thanks for listening.


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 6:02 am 
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Welcome Sophie! So glad you are here with us. My daughter Laine has been treated for tick born illnesses for about a year and a half. Shoulder pain in a reoccuring symptom with her that she is having trouble with right now. Seeing a chiropractor helps her.

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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 8:59 am 
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I just picked up mylab results to bring to my LLMD in November. Lyme test as follows;
Igg
band 41 reactive
band 66 reactive

igm
band 41 reactive

any thoughts as to what this may mean???? thanks for any help!
Sophie


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 10:39 am 
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Hi Sophie,

Welcome!

Lyme Disease is very complex, not understood by mainstream Md's (so I am VERY happy you have an appt. with an LLMD).

Lyme can cause ANY kind of pain. It started 10+ years ago for me when I developed migraines...I didn't know that was the start, but it was. It later grew to include about 40 symptoms on the symptoms list. You might want to read some patient stories, they are what really helped me determine I had Lyme. (If interested we have stories located at the Board Index - click on the "house" in the upper left corner and it will take you to the index)

Shoulder pain was always a problem for me. Six in my family have LD, my sister had shoulder pain and then frozen shoulder. Years later she was found positive on the WB.

Was the test done through Igenex lab? Band 41 can be significant it is a "flagellin protein of all spirochetes" which means they saw the "tail" of some kind of spiral shaped bacteria. 66 is cross-reactive for all Borrelia, common in all bacteria.

Unless the western blot was run through Igenex (which LLMD's use) it doesn't mean much. I had 2 negative tests through "mainstream" labs. There are patients that have negative tests at Igenex too, but still commence Lyme treatment.

Lyme is NOT to be diagnosed by a test - that helps but doesn't prove a whole lot if negative. Your immune system could be so "down" that it can't mount an immune response against Lyme - that basically means if your immune system is weak, it couldn't even show a positive lyme test. Lyme is a clinical diagnosis and the doctor you are going to see in November will diagnose you correctly.

As far as "Post lyme syndrome" - doesn't exist. As long as you have symptoms it is "Chronic Lyme Disease". This is entering yet another confusing part of lyme - there are a group of doctors that treat lyme specifically and then you have mainstream Infectious Disease Md's battling them about symptoms and treatment. You will learn all this as time goes on.

With the description of symptoms and pain and "being a prisoner in your own body" - it talks to me like Lyme...I know this feeling well as do many of us.

Study these links, they will help you to start to learn more about ever aspect. We also have a video re: Lyme that pretty much explains in less than 5 minutes everything. Here are some links of study. Again, welcome, thanks for joining us - we are more than willing to walk with you through this.

Oh, Doxy should be given at 300-600mg - but 200mg is better than nothing and your LLMD will adjust or change according to your needs. Symptoms INCREASE called "Herxing" is common with Lyme when on antibiotics, link also below.

Dana

Links of Interest:
http://www.ilads.org (read basic info)
http://www.canlyme.com/patsymptoms.html (Symptoms list)
viewtopic.php?f=6&t=35 (herxing increase of symptoms on abx (antibiotics)
http://www.youtube.com/watch?v=ZGQINypsf7g (video)
viewforum.php?f=6 (tons of info)
http://www.lymeinfo.net
http://www.truthaboutlymedisease.com (main site - check resources)
http://www.lymediseaseassociation.org
http://www.igenex.com

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 Post subject: Re: shoulder pain-reply for Dana
PostPosted: Tue Sep 09, 2008 11:05 am 
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Hi Dana,
thanks for all of the great info. this is all very overwhelming to me. My test was through the QUEST lab not the other one that you guys speak about. I hope my LLMD has a cancelation and i can get in sooner than November. I am just amazed by all of this. One year ago, i was full of energy...now i feel like i am 80 years old. I just turned 40! this is very depressing. and no one knows anything about it so they all start to give me that look like i am crazy. i just suffer in slence. my husband has been great. i am trying to plug along for the kids....i don't want to put this on them, you know? i wish so bad my test was positive.....thaks for all your help.
sophie


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 11:51 am 
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Welcome Sophie! :hug: I'm Dana's son, Danny, and also take care of the website and forum, so if you have any questions or problems, let me know. :)

Oh man the infamous Lyme shoulder pain! I think somewhere along the line everyone that has had Lyme in the past or presently has experienced intense shoulder blade pain at some point. Is that the area that was hurting for you?

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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 12:12 pm 
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Sophie,
It is completely overwhelming, I know. When I stepped into the world of Lyme I had no idea what it was about. Then as I studied and studied and studied, I learned there is SO much to this.

Quest - forget it. I had 2 negative tests there. I think we all have been there done that. Igenex is specialized in Tick Borne Diseases. If you had a positive band 41 at quest, I obviously think (even though I am not a doctor) something clearly is going on with Lyme. I await your Igenex test, which will be so much more accurate and wait until you see your LLMD, a doctor who REALLY will understand! That moment for me was amazing. We can't post Lyme doctor names in the forum, but we can initials...I hope you have a really good LLMD, it sounds like it by the "wait". Can you tell me the initial of the Dr.

I am glad your husband is supportive that is so important -- best thing I learned, I wasn't crazy (I was sure I was when 12 doctor's could NOT diagnose me). I was a healthy 42 year old (I thought) and I had what I refer to as a lyme "explosion" - you can read my story if interested here. Maybe you can relate?: http://www.truthaboutlymedisease.com/ph ... p?f=5&t=77

Also - there are some good video's (I personally like video's) here at youtube: http://www.youtube.com/results?search_q ... type=&aq=f

I also have a video section here that can really help too: http://www.truthaboutlymedisease.com/ph ... p?f=6&t=13

Recently a documentary was released at Tribeca Film Festival about Lyme Disease, it is getting HUGE attention a clip of that video here, watch this! (now available on DVD if interested in getting the whole documentary let me know): http://www.youtube.com/watch?v=sxWgS0XLVqw

Are you aware of co-infections? I know more! Ugh!! Co-infections are other bacteria ticks transmit and most of us with Lyme have co-infections, they can wreak havoc with symptoms. They will also need to be treated "specifically". Make sure your LLMD tests you for all co-infections through Igenex: Here is list of co-infections: http://www.lymeinfo.net/coinfectionarticle.html AND HERE IS ANOTHER ONE W/SYMPTOMS: http://www.truthaboutlymedisease.com/ph ... ?f=6&t=313

I know I have over loaded you, it all necessary to know and you and your husband can really learn from this stuff - take your time - study, watch some video's and slowly absorb all of this.

You are with people who know EXACTLY how you feel.

I can't wait until you can get into your LLMD and get reliable testing through Igenex.

Let me know how your study goes...and we are here for any questions you may have. I am very glad you have a supportive husband. Many family member's do not understand (how could they?) I remember a woman who use to say "You don't get lyme, until you get lyme".

Feel free to post all you want to know...ok?

Hang in there - you will soon be in good hands and you are already a step ahead being on abx (short for antibiotics). If you are in a lot of pain, do you have a way to get a good pain management Md?

You aren't crazy - the disease is absolutely crazy though - I was so relieved to know that .... phew!

Dana

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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 12:50 pm 
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dana and danny-you guys are so nice! all of this information...seems like someone finally cares. i read about my LLMD online...made the appt and then mary ann had emailed me his name. it was the only one she had in CT except for a childrens doctor. so i think you may know who it is. interesting about band 41...will the LLMD run more tests? i will be off abx 2 months before my appt. and so the story continues...you guys are the best for making me feel better about all of this...my friends don't even ask how i am feeling anymore! nice friends...huh?
sophie


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 3:53 pm 
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Hi Sophie,

We do genuinely care, trust me, we know how awful this is. I desire nothing more than to help others.

There are more members that will be along, haven't seen many today (some days are slower than others) - but this is a VERY caring, kind group.

Yes, your LLMD will very likely run more blood tests (through Igenex I am positive) and being on abx or not will not effect the test.

I have been in treatment a long time now - when I was on abx one year and then tested through Igenex and still positive!

I know it feels good to find people who understand - and we do! You have expressed (about your friends) what ALL of us go through. It is just impossible for anyone to understand this, unless they have lived it. Family and friends - just don't get it. That is why I was SO happy when I found my first support group - they were "my people" - I was amazed there were other's like me! It is comforting.

I hope the other members come along soon and introduce themselves, you will see how great everyone here really is. It becomes like family - we share our bad days, our good days, just everything - with others that truly understand and care.

Do you remember being bitten - I don't. Many don't. I could have even gotten this from my mother, she was bitten as child. She had "fibromyalgia" pain, which by the way in 99% of cases is LD. My older sister (in her 50's) also has LD and her husband and daughter! It is common if one in a family have it, that others in the family do too.

Hope I did not overload you with too much info, I have a tendency of trying to tell all I have studied in 2-1/2 years, which is impossible really, you learn as you go....but you can go slow and just check out each link above w/your husband (if he is interested) or on your own and you can really learn a lot.

Anything you need, we are here. Feel free to cry, vent, whatever you feel....I am the best at crying and venting LOL!...So feel no fear in expressing how you feel, we are here to walk through this with you and comfort you too.

We are very happy you found us!


Dana
:hands:

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Truth About Lyme Disease Video : http://www.youtube.com/watch?v=ZGQINypsf7g

Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 4:12 pm 
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sophie742 wrote:
dana and danny-you guys are so nice! all of this information...seems like someone finally cares. i read about my LLMD online...made the appt and then mary ann had emailed me his name. it was the only one she had in CT except for a childrens doctor. so i think you may know who it is. interesting about band 41...will the LLMD run more tests? i will be off abx 2 months before my appt. and so the story continues...you guys are the best for making me feel better about all of this...my friends don't even ask how i am feeling anymore! nice friends...huh?
sophie


That was our goal with TALD, to give people a place to talk and feel the love so to speak! :D

I've personally been to rock bottom and back twice in my life with Lyme, more intense in the past year when I had it. Everyone else here also has plenty of experience unfortunately.

We're familiar with the friends and family not understanding or caring, the herxes that last long into the night with no end in sight (at least it seems there is no end in sight in your mind at the time), the aches, the pains, the mental part of it, the emotional part, and most importantly the spiritual part. Air out any thoughts, concerns, or whatever you want to say because I can guarantee AT LEAST ONE person on this board has already been where you are and we can do our best to help you and spare you the stress that most have experienced during those times. :hands:

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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 7:11 pm 
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thank you all for all of this support! i wish i found you guys in april when all of my pain began and i was freaking out. funny how when it first started the pain actually made me feel so scared i thought i was going to vomit, and now i am so used to it, it is just part of me you know? i don't remember how it feels for my shoulder not to hurt. i just want to sleep on my left side again. the heel pain is a killer. although i have days when it doesn't bother me. i feel a bit that i am being punished for not going to the doctor when i had that rash last september....like i am being taught a very painful lesson. i even started to see a counselor back in april because i was so anxious. everyone told me "well you are 40 now and your going to get aches and pains"...but this is different. no pain meds work on my shoulder pain!!!! funny thing is i can still move it...it is not frozen or stiff...just throbs a lot. and sometimes i get the same pain in my back and other shoulder, but not as much as that left one. when this first started i just though my purse was too heavy. after my appt. with the infectious disease specialist last week i was at the end of my rope. i was like"you are not going to help me because my test was negative"...he then got a bit short with me and wanted me out of his office. i couldn't believe it. i sat in my car and cried for an hour before i could get myself together enough to drive home. doctors suck....i even had the p.a. at my physicians office tell me i should start a gratitude journal instead of harping on the negative. when i told her about the rash she ignored me and said my test was negative..bla..bla bla...i felt like saying do i need to run in my back woods looking for a deer to get close to, so i could get bit again, have a positive test and then someone might believe me?????this whole thing is nuts. when my son had it in the spring he had his blood test done, came back neg. nurse called and said to take him off the ammox. because he didn't have lyme. HELL NO...he had a classic rash...(unlike mine...big and expanding under his arm), headache, knees ached...are you kidding? of course he has lyme! and from what i heard....children won't test positive until 6 months after a bite so why the heck did they make me take my 6 year old for a test in the first place????? where do these doctors get their education...we have to be our own doctors. and my fear is that if my test stays negative..i won't have any coverage for the expenses...i know the visits are out of pocket. i am stressing about that too...like i don't have enough to worry about. our next president better improve all of this nonsense!!! i am still so blown away by all of this...it is really unbelievable! thanks for listening to me vent...now i need to get some rest!


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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 8:11 pm 
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Hi Sophie,
Welcome to TALD. I am sorry you are battling both the disease itself and the politics that have caused so much confusion. You will become educated in a way that will equip you to advocate for your well-being and that of your children. I am grateful you knew to help your son when the nurse was not properly educated regarding the bulls eye rash and who wrongfully advised you to stop the amoxi. Bulls eye rashes are indicative and ILADs treatment guidelines treat prophylactically to prevent what many go on to experience in devastating symptoms b/c of the eratic behavior of the bacteria and its co-infections. No one wants to do antibiotics; but there is a time and appropriate place.

You asked about the antibody bands and particularly about Bands 41 and 66. Altho' the CDC includes it in their criteria for diagnosing Lyme, Bands 41 and 66 are cross reactive with other bacterial infections. ILAD doctors do not generally consider it solely, when diagnosing b/c of this fact. They choose to diagnose on borrelia or Bb specific bands when tests are taken; but Lyme disease is clearly a clinical diagnosis only backed up by labs.

The following are known throughout the LLMD community of those specially trained as "A Wise, Common Sense Position to Understanding Clinical Basis"

Excerpts include: "No one at the CDC, FDA or any medical board in the USA has one particular scientist physician massive experience in treating Lyme in youth and reading Western Blots as Dr. J (CT). So read below his clear and convincing reasoning on the interpretation of the Western Blot.

First, the Western Blot measures the antibodies your body makes to attack the Lyme infection. IGeneX is the preferred lab b/c of specificity for vector borne infections; is an internationally tick-only lab, with full lab certification. Other massive national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms b/c the tests are neither specific nor sensitive enough to the borrelia.

The author goes on to say: "if you have had a Western Blot done at another lab, please still glance at the result. Why? Because you may find that one of the antibodies or "bands" was positive.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella, or huge stringy rod that projects from it. Very crudely, the flagellum looks a dash like a sperm tail on the Lyme organism and is most often positive. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. J's point. It you see an 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like a tusk on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type, and +++ means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, can be grateful their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.

Currently, IGeneX does not use Dr. J's criteria. Perhaps because they are accountable to different laboratory regulating agencies, and in general the government is anti-progressive Lyme.

Regarding Lyme Serology: There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.

The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.

This does not make sense.

So, Sophie, your Lyme disease is a clinical diagnosis. Has your LLMD run a CD-57 Natural Killer Cell (NKC) test for you? This is a great immune marker also quite specific for Lyme if you fall below the threshold of 80. http://www.ilads.org - treatment guidelines speaks to this test.

This is alot of info - info overload - for now; but hopefully helps answer one of your ?? re: the bands.

We see both Dr.J and our naturopath in CT for our daughter. We are a PA family.
Are you open to sharing who your ND is there? Feel free to PM me if you are comfortable doing so. Wondering if he is 'our' ND as well.

We hope you find TALD a place of comfort and inspiration.
Blessings to you,
Sojourner (Diana)

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 Post subject: Re: shoulder pain
PostPosted: Tue Sep 09, 2008 9:30 pm 
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Sophie - make sure to read my story link I gave you above. You will see the mistreatment of Md's and misdiagnoses I came across and some of the most illiterate comments made to me during my search!

Usually Md's will end a visit with "you need psychological help"...then you know its Lyme! Or when they throw you out of their office...it is lyme! When they don't have the answer, it is Lyme!

My LLMD said simply, "They do not train Md's in medical school for tick borne diseases, we graduate not knowing a thing!" Thank God some doctor's decide to become LLMD's and become educated. they are our lifeline in a world of doctor's that think we are crazy! But it is all very real. ID doctor's are some of the worst at diagnosing lyme...they all really don't have any knowledge. Just think how many are out there in the world that have Lyme and believe their doctor's nonsense? Oh, that is so sad and scary!

Mine "explosion" started in April '06 - I have come a long way since then I believe. I am still not well because I had cortisone shots that just slammed my immune system, before I knew I had Lyme and before I knew it could make me much worse. So let me take this moment to warn NO corticosteroids of any kind with bacterial disease/infections. My prognosis became much dimmer at that moment, but there are people misdiagnosed with MS, Parkinsons, etc., that use corticosteroids for years before they find out it really was Lyme all along. So sad, it makes me nauseated.

You found us now - that is what is important!! When you read my story, you will know that pain and I are no strangers. Amazing how a bug bite can create such havoc, it is still hard to fathom.

Well - at least we know there is HOPE and that is the best part! It can be for some an easy recovery or a roller coaster of ups and downs. The goal is to eventually have the good days outweigh the bad, until finally we are well!

Please make sure when you have time to watch the videos and read the links I gave you, ok? Some good stuff there...really. Oh one more very important link, this is Dr. Burrascano's treatment guidelines for Lyme Disease, he is really the pioneer in Lyme treatment: http://www.ilads.org/files/burrascano_0905.pdf

Also an excellent book to read is "Uknown Cure", here is the Amazon link to it: http://www.amazon.com/Cure-Inside-Epide ... 768&sr=8-1

Have a good nights rest knowing you are not alone!
Dana

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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 2:39 am 
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Sophie, my name is Jennifer. I will try to write later if I remember. Your story very much sounds like Lyme and IF I don't remember .. the girls here have given very accurate information.

jmgarnet76.blogspot.com

I just recently started this blog on my life .. and on Lyme. You may find some of the information helpful... you may already know it. :)

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The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31
http://www.jmgarnet76.blogspot.com


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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 5:50 am 
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hi all,
i finally read your story Dana, oh my gosh...i feel so bad for all that you have been through. no one should have to suffer like that. i think it will take me a bit of time to sort through all of this information. read other stories, etc. maybe things happen for a reason and look at how many people you have helped because of this. I know all of the info you have given me has been a lot of help. although i am a bit bummed about the band #41 and #66 being non specific. question about the tests. now will my LLMD retest my blood and send it to the igenix lab???? and will the same bands react positive on that test but the interpretation is different so the result may vary? or could new bands react on that test. i had my test through QUEST back at the end of may. i was on no treatment at the time. since i have been on pennicillin and doxy(maybe off for about 2 weeks...the penicillin from the so-called strep thing) now if i went and got a test done today, would the results maybe change because of the antibiotics??? should i just wait to see my LLMD and let him run all the tests. my concern is maybe if a new QUEST test comes out postitive i can get more doxy so i don't have to be off meds for 2 months before i see my LLMD, any thoughts????? sorry if i confused you all, i confuse myself most of the time, too. also symptom question:
anyone experience this strange feeling on the upper side of neck.(almost under the chin).like something is there but it isn't? it's like if i lay down sometimes i have to rearrange my neck to not get this very strange feeling. it's like there is a lump there but there isn't....i know that is crazy. thanks for all your help...and one more question...what othr bacteria could signal band #41? i did a bit of research and i think the strep thing is completely different. thanks for all your help..i soon have to go to work and suffer in silence yet another day....sometimes i wake up in the morning and get depressed because it is all still here....hoping one day i wake up and it has all been a bad dream.
Sophie


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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 6:39 am 
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Sophie, I'm sorry I'm late on the welcome. been dealing with my own personal hell. If you want to be in a lyme forum, this is the place! Everyone here is great, no drama, no back stabbing, as I'm finding in just about every other forum. If you need anything please let me know. I'm always up for helping someone.
as for shoulder pain, I know Dana and I both have it, it's like chinese water torchure! I feel for you.
warmest regards,
jaime

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 7:40 am 
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Welcome sophie: How strange that you live in CT and people don't understand Lyme! Yikes.

I think everyone covered their bases with answering your questions - wanted to say welcome and I look forward to more postings from you.

It amazes me that you had a rash, live in an endemic area and a son with Lyme and rather classic symptoms.

The posts were rather long (hard for me to read - I usually go back and read later) so I don't know if anyone suggested that you try some herbals until you can see your Dr. My sister used Samento while she was waiting to see our Dr. If you decide to go this route you should discontinue two weeks prior to your appt as it may affect your test - although my sister didn't do this and she still had a positive WB from Igenex.


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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 11:35 am 
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Molly good idea. Sophie - one thing that is "natural" that kills lyme is "Cats Claw". You can likely buy it at any vitamin store - my sister did the same thing. She did some natural "meds" until she was able to see an LLMD. This might be something to consider when you run out of Doxy.

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Truth About Lyme Disease Home Page: http://www.truthaboutlymedisease.com
Truth About Lyme Disease Video : http://www.youtube.com/watch?v=ZGQINypsf7g

Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: shoulder pain
PostPosted: Wed Sep 10, 2008 7:15 pm 
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Welcome Sophie! :ghug:
Just wanted to say hello and introduce myself!
I'm Melissa, but you can call me Missy :D

:hb:

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