HealingWell
Search Close Search
☰

I need your help!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/23/2010 8:56 AM (GMT 0)
Dear friends for FOUR years doctors are unable to find diagnosis for me and tonight I found this forum.
I have so much joint pain,weakness,and enlarged lymph node under my jaw for 2 years.I did not get any answer except:ANXIETY!
There is time when I have hard time to walk because my all leg muscle hurt so much.
There is time when I get low grade fever and I am shaking without being sick.I got so many times flu symptoms but I have no flu.
Dizziness was so bad,that I was hardly walking and always scary I will die.I couldn't feel ground when I walk and I complain to many doctors but I got only one answer:ANXIETY!
I usually always feel cold.......
I know something is wrong with me but NO DOCTOR IN ONTARIO want to help me.
I start taking antidepressants because I didn't have choice.I got some bad fears that I was not functional.
I got claustrophobia,agoraphobia,panic attack,depression,social phobia,GAD....
Nobody trust me how I feel!
I beg some doctors for help but I didn't get any!
There is nights I can't sleep because of my leg pain and some nights my toes burn on "fire".
All my body is sore on touch,all my joints.I have no energy and I am sleepy all the time.I am very tired and I gain lot of weight.
I am not going for walk because I just want to sleep all the time.I have no interest in anything.I am NOTHING!
My blood test is coming back abnormal and THERE IS NO DOCTOR WHO WONT TO HELP ME!
My ESR IS HIGH---always vary from 50-38
My hs-CRP is high--now is 15.5 and it was 21.1
My ASO TITRE is high-191......

They send me to see internal specialist,he told me you have to see rheumatologist....
I went to see rheumatologist and after my ANA and RF come back negative she told me ;YOU DO NOT BELONG IN MY FIELD!
She found out my ASO come back high and she told me go to see ENT specialist because you have strep throat or nose......
I told her I have no problem with troth and nose but she didn't listen.
She release my file!

I got very,very sick 4 years ago in winter time.I got something and nobody was able to tell me what is it.I have so SEVERE pain in my head,ears,eyes......so,so,bad I was crying for 10 days and I COULDN'T MOVE MY HEAD.
I was thinking I will die......
My fever was so high and even after 2 weeks I was still having low fever that last for months.I still have SOMETIME!
Every time when I was going in ER they told me:
maybe you have sinus infection,maybe you have flu,maybe you have some viruses and even then I had high sedimentation rate ESR.
I was treated just once with antibiotic.
This was February 2007 and till now I have no idea what is wrong with me.
My all life change in 2007.....after I got sick and everything start that day......

I found this forum and I am very interesting to find out what are you my friends thinks about my symptoms?
Can I have Lyme disease all this years?

I am so sorry for long post but I hope you will answer my question.
I lost all the hope,I can only hope one day I will find my own diagnosis.

Love Slada
Posted 7/23/2010 11:32 AM (GMT 0)
Slada,

Lyme disease is a bit difficult to diagnose because the symptoms are similiar to a number of other illness and the testing is poor at best.  However, some of your symptoms were identical to the ones I experienced when I first got sick (enlarged lymph nodes in neck, light-headedness, joint pain, etc.).  I recommend getting your Dr. to approve a Lyme disease test through IgeneX labs (most of us seem to think IgeneX labs has the most accurate tests).  You can check out the IgeneX website online.  I would recommend just doing the IgG/IgM Western.  I think it runs about $200 (but is not covered by insurance). 

I wish I had time to elaborate more but unfortunately I have to get to work.  I'm sure other members will offer their suggestions.   

Hope this helps.  Hang in there!!


Brad 

Posted 7/23/2010 2:58 PM (GMT 0)
Hi Slada,
Welcome to our forum! I am so sorry to hear how ill you have been - most of us here can relate to what you have been through, going from doc to doc & not getting any answers or help. Since you are in Ontario, here is a link to Canlyme, the Canadian Lyme Disease Foundation
www.canlyme.com/

This link will take you right to the support page. There is also a lot of really great info there, although I sure don't want to discourage you in any way from posting here on Healing Well!!

It's my opinion that you should be seen by a Lyme Literate Medical Doctor (LLMD) to be properly evaluated, but it sounds that Lyme or another tick-born illness could be responsible.

Another thing I would suggest is that you read through the thread at the top of this forum titled "New to Lyme?...Start here", as it has a lot of really great information to help get you started. I would also suggest that you read, read, read on Lyme Disease & co-infections to educate yourself, as you will have to become your own health advocate in order to assure you are getting the help you need.

Tick-born illnesses can hide in the body for many years in some people (I'm one of those lucky ones) until just the right amount of stress happens in your life. It sounds as if you are scared, I know I was just before I figured out that I was dealing with tick-born illnesses, but remember you are not alone!! We are here to help you navigate through most of this info, to encourage you & to help you get through this!!

Hang in there!! You have come to a great place to start your journey to health!
Posted 7/23/2010 3:17 PM (GMT 0)
I really don't have any advice to give - I'm a little "foggy" right now - but wanted to tell you I'm sending you good thoughts and hope you find a diagnosis so you will be able to receive treatment soon. Hang in there - things will get better.

Victoria

 

Posted 7/23/2010 9:34 PM (GMT 0)
My dear,lovely friends!
Thank you so much for all support and help.I will ask my doctor for blood test and I hope is not expense because I can't afford right now.
I have many symptoms of lime disease and I will not give up until I found do I have Lyme or not.I went to see ENT specialist today and I ask him about Lyme but he told me:you probably don't have.......probably.....I am question his knowledge....
I got ultrasound results for my lymph node that I mention before and he told me you don't have......I told him,yes I do I feel it....oh....I was so mad.Second think is my thyroid have HYPOECHOIC NODULE---5mm and he didn't told me.I ask for ultrasound results and read my report......hypoechoic may be cancer......O MY DEAR GOD!
Why he is not telling me a truth about ultrasound,he just put in my file report and close file......if I didn't ask in front desk I will never know.He want me to send him blood test results,because HE HAVE NO IDEA what is wrong with me......and I fax him all.
He told me IF BLOOD TEST IS NOT OK I will call you.......he don't trust me.....I am so so sad and mad....
My dear friends I can't believe what is happening to me........I HAVE TWO CHILDREN and I have to be healthy for them for many years but I am so scary,doctors will destroy me....

Love Slada
Posted 7/23/2010 9:46 PM (GMT 0)
Hi Slada,

Welcome to the forum! Just from reading your post regarding you sleeping all the time, makes me think that maybe your thyroid needs to be checked. A low or high thyroid can cause anxiety, panick attacks, depression, etc. I had all of those symptoms when my thyroid was low. If you have a high ESR, then you have inflammation somewhere in your body. Since you do have joint pain, it could be your joints. We have a Rheumatiod forum on here that will be able to help you understand the ESR and CRP testing and what it means. My RA factor was negative but my doctor did another test that revealed that I indeed have Rheumatoid Arthritis.

You should also try to find a Lyme Literate Medical Doctor(LLMD) so that they can do a Western Blot test on you to check for Lyme Disease. Where do you live?
Posted 7/24/2010 12:08 AM (GMT 0)
Dear CajunGrl thank you so much for welcoming!
I was tested for Rheumatoid Arthritis and everything come back negative.....RF....ANA and she told me I don't have any autoimune disease like Lupus.She told me I do not belong in her field and I should go to see ENT specialist because I have high ASO titre for strep.
I live in Canada and I have to get test for Lyme just in case,because no doctor want to help me:((((:((((((
I can't believe.I just can't:(((((
My other blood test for thyroid was always normal,but my ESR,CRP and ASO very high.
Posted 7/24/2010 1:28 AM (GMT 0)
Slada,

I agree with the others. Try to find a Lyme doctor if you can. Not to discourage you, it can be very expensive and the wait-list can sometimes be very long (several months). If you have an open-minded GP perhaps he will agree to doing the IgeneX Lyme disease (IgG/IgM) Western blot (in the meantime). If you test positive perhaps he can get you started on meds.

Most MDs are NOT knowledgeful about Lyme disease. I was told I had everything from cancer to MS. Fortunately, I work for a medical school (as an infectious disease scientist) and had colleagues to help figure out my 'problem'. If you do have Lyme it really is better to start treatment as soon as possible so try to get the ball rolling if you can. It's very important (regardless of the nature of your illness) to keep seeking help. I probably pissed off half the MDs in Indiana before I got a proper diagnosis....

I found this forum to be really helpful (and still do). There is a wealth of information here and more times than not they are willing to give sound advice/suggestions.....free of charge.

Brad
Posted 7/25/2010 8:51 PM (GMT 0)
Dear Brad thank you!
It is great news,you finally found what was wrong with you,I will be so happy to find out too,because like you I want to many doctors and they have no idea my diagnosis.I can imagine how you feel now after gating on right meds.....I am sad because nobody even try to do something.I will ask my doctor about those blood test.....thank you for giving me great idea.
O my dear friends I just look my blood test results and rheumatologist order IGG,IGA,IGM......I even didn't know till you told me Brad that those tests are for LYME.....my is negative,does that mean I have no LYME?

IGG,IGA,IGM........IS THAT FOR LYME?

Hug from Slada
Posted 7/26/2010 1:46 AM (GMT 0)
Slada,

IgG, IgA, and IgM are antibody tests. Was this done for Lyme or another infection? Which lab? Many folks on this site (including myself) don't test positive for Lyme using the standard Quest labs test along with CDC guidelines. Lyme is a clinical diagnosis. IgeneX labs test seems to be more accurate than Quest. Hence, the reason I recommend you trying to get your test through them. If you think you have Lyme you should try to set up an appointment with a LLMD ASAP because the wait-list can be long. You can always back out later if you choose....or you find out that you have another illness.

Hope this answers your question.
Posted 7/26/2010 4:54 AM (GMT 0)
Hello Slada, Do you have any lung or breathing difficulties? lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort in the chest area? Don't worry too much about getting the test to turn out positive as many who do have lyme or one of its co-infections never test positive. It does sound like you may have some kind of tick-born disease. Just can't think of another disease that can cause so much odd and strange symptoms.
Posted 7/26/2010 5:30 AM (GMT 0)
Dear friends.....I have no respiratory symptoms but lot other.
Rheumatologist did those test because nobody have idea what is wrong with me,she order ANA,RF,everything some back negative except ASO titer and she told me I have strep throat.I told her no....i don't remember last time I was sick,but she told me I am not in her field.
She test me for autoimmune disease this is why she order ANA test.
This is what I have on my report about Lyme disease that you my friends told me:

IMMUNOQUANTITATION
IGG---12.50-------(NORMAL 5,64-17,65)
IGA---1,77----------(NORMAL 0,85-3,85)
IGM---1,51----------(NORMAL 0,45-2,50)

IMMUNOELECTROPHORESIS-SER
NORMAL

Thank you for all your help dear friends!
slada
Posted 7/26/2010 4:14 PM (GMT 0)

Dear Slada,  Your experience is much like most of those posting here and most of us hurt along with you.  It is indeed a nightmare for all of us or a family member that has lyme and its co-infections.  We go from Doc. to Doc. and nothing turns out positive for anything yet the patient is suffering so terribly. I am a Mom of a healthy 20 year old son that was just fine until a lyme tick bite. Then all hell broke loose.  After researching and researching, you just know that lyme disease is the only thing that makes sense. He was able to finally get to a Doctor that knew the correct tests to run and he tested positive for lyme.  I can tell you though, that it would have made no difference to me as I knew what the cause was without a positive test .Over the next 18 years illiness kept popping up and he ended in the ER 4 or 5 times, always with something different and the Doctors didn't have a clue what was causing the problem. I knew it was all related to the tick bite but my son believed the experts that he really didn't have lyme. I had to be really careful here as both my son and Wife began to think I was getting a little paranoid about everything being caused by Lyme. He finally, just this year, now knows that he has lyme disease and several co-infections and he is being treated accordingly.

 

Slada, you have enough symptoms to suggest Lyme and or viruses  indicateing your body has been dealing with some type of chronic infection. Both Babesia and Bartonella cause enlarged lymph nodes as you mentioned you have and most people have these infections along with lyme disease. One complication to Bartonella is it's unique ability to turn off the antibodies in the system. It can turn off the Lyme antibodies and also it's own. This adds to the complications of diagnosing the disease because the antibodies are what are needed to provide the positive result on a ELISA or Western Blot test. Also because Bartonella lowers the immune system, it is even more important to diagnose and to also steer away from steroids- including those used for spinal injections without knowing the complications that can arise.

The Best To You!! Allieann

Posted 7/26/2010 9:12 PM (GMT 0)
Dear Allieann thank you so so much for yours letter!
I am really happy for all information's and I am so sorry for your son.It is very,very difficult for me my friend because I know something is wrong.I lose all the hope that somebody will help me.I don't know my dear friend to much about ELISA blood test and I will ask doctor for blood test.Can you please tell me did he have ESR AND CRP high before he was diagnosed?
I have also ASO TITRE high this is why I am so confused.I don't have strep,I am not sick,I have sometime flu symptoms but no flu.
Can you please tell me something before he was diagnosed?

IMMUNOQUANTITATION
IGG---12.50-------(NORMAL 5,64-17,65)
IGA---1,77----------(NORMAL 0,85-3,85)
IGM---1,51----------(NORMAL 0,45-2,50)

IMMUNOELECTROPHORESIS-SER
NORMAL

Is those tests for Lyme disease?

Big hug from Slada
Posted 7/26/2010 10:32 PM (GMT 0)
Hi Slada,

So sorry you are not feeling well.  From what I know, the ELISA is the least reliable test, the Western Blot is better especially if done at IgeneX Labs in Palo Alto, CA.   Yes, I know it's expensive but well worth it.  They use human antigens compared to rabbit antigens.   You can order a free test kit from IgeneX (yes, even from Canada) but you will need a doctor's signature in order to be tested.

www.IgeneX.com

When I first became infected with lyme I also had flu like symptoms and extreme fatigue.  I went to different doctors for 5 long years and finally with no diagnosis so I became so frustrated that I researched and researched and read all the symptoms of lyme and knew I had it.   I didn't know about alternative medicine back then, I thought antibiotics were the answer but a doctor was not going to prescribe them unless I had a positive lyme test which I ended up having.   This doctor prescribed 6  months of Doxy for me (I was also coinfected with Ehrlichiosis) and at first I thought I was getting better only to have my symptoms return.

I also knew nothing about detoxing back then and how important that is in the healing process.

Long story short:  I have been totally better for over 4  years now and I became well using alternative medicine, not the antibiotics...  It was a long and bumpy ride but please don't lose hope, okay?

Hugs!

Denise

Posted 7/27/2010 4:44 AM (GMT 0)
Dear Denise thank you so much for all help!
I will read and first I have to see who is testing for Lyme in my place.
I am very confused is it not for lyme?
IMMUNOQUANTITATION
IGG---12.50-------(NORMAL 5,64-17,65)
IGA---1,77----------(NORMAL 0,85-3,85)
IGM---1,51----------(NORMAL 0,45-2,50)

Is this for Lyme tests?
If it is than I am negative and I don't have lyme!
I am so happy you are feeling better.This is great news.
You told me I can get free test?
How?
What my doctor need to write down?

I am in Canada so if you know something can you please let me know!
Love you ALL
Posted 7/27/2010 5:43 AM (GMT 0)

Slada, A high titer, esr and crp, I believe,  show inflamation somewhere in the body. It seems like my son's tests were also high. This told the Physician that he did have an ongoing infection but they weren't sure what it was.  The Lyme tests he finally showed positive on were the Western Blot. 

 

I don't reconize the IGG, IGA, or IGM as lyme related tests.  They may have something to do with the immune system.  rolleyes   


 

Posted 7/27/2010 6:56 AM (GMT 0)
slada,

The tests you list (the IgA, IgM, IgG) are not specific to Lyme. I think what these tests are showing is the total IgA, IgM and IgG in your blood. This is a generic measure of your immune system and since your numbers are in the normal range, they only tell you that your immune system is not over or under-active in the production of antibodies of these types.

CRP and SED rate (ESR) are generic measures of inflammation in the body, but they do not tell you where in the body the inflammation is occurring. Many diseases, including Lyme and other infections, can cause the kind of inflammation that will make these numbers go up, so knowing these 2 numbers alone is just telling you something is wrong and not telling you what that something is.

I don't know anything about Strep titers, but if I had to guess, I'd say that you were a symptom-free carrier of the Strep and that may be why you have the high titer without symptoms. It may be sequestered by the body in that lymph node that is enlarged.

Sounds like you need to find another doctor who will take you more seriously. Rheumatologists may not be the right kind of specialist. A Lyme-Literate physician may be able to help figure out what is going on - Lyme may or may not be what is at the root of your symptoms, it is hard to say. But a lyme test (IGeneX Western Blot is best) would be good to get done. You can post the results here and we can help you figure out if you need to see an LLMD or not based on the results (we can't diagnose you but we can help to point you in the direction to go if your test results suggest Lyme is a possibility).

I hope this helps - take care,
Posted 7/27/2010 6:52 PM (GMT 0)
Thank you my dear friends!
I went in one Walk in Clinic and very very nice doctor works.I show him my blood test,he take out swab for strep,he order ultrasound of neck and he told me I have to take antibiotic so he can see is it any improvement.Because I have penicillin allergy,I can use erithtomicin but because I am on Cipralex I shouldn't.He told me after those test he may sand me to see infection disease doctor.
This is great!
Finally after 4 years!
I forget to ask him about LYME but I ask him can I have strep in my blood for 4 years and he told me:YES!
He is sending me for electrocardiogram.I am having this Thursday ultrasound,August 10 electrocardiogram and I don't know for strep.
I will go to see him on Tuesday and I hope he will tell me some results.I will then ask him about LYME for sure.
I have question for you dear friends!
ASO is for strep,so I don't think LYME is related to that,is this true?
I will can in US now and ask for free.I have no idea how much Canada lab charge for Lyme tests!
LLMD What is LLMD stand for?
I know is lyme specialist but I need to know full name so I can see where do I have!

Bigggggg hig from Slada!
Posted 7/27/2010 10:38 PM (GMT 0)
Hi Slada,
LLMD stands for Lyme Literate Medical Doctor.
Also, the free test kit that Deejavu mentioned - means that the kit is free, you still will have to pay for the test to be done. Click on the link for Igenix in Deejavu's post to learn more.
Keep posting your questions here, between all of us, we can answer a whole lot of them hopefully!!
Posted 7/28/2010 2:20 AM (GMT 0)
ASO is not related to Lyme. I think it is a Strep-specific test.

I hope this infectious disease doctor you are being referred to can help you - keep us posted on what they say.

Take care,
Posted 7/28/2010 11:06 AM (GMT 0)
Dear friends,I still don't have appoitment with infection disease specialist and maybe I wrote wrong.
He will send me after couple tests,ultrasound,EKG,swab for strep throat.For me this is just waist of time!
I wait 4 years and I am sick of waiting.
Dear Razzle I think same like you:
ASO is not for Lyme.....
Dear Traveler I will call them and ask to send me in Canada if possible!
I have no strep throat!
How I got this bacteria?
Where else I can have in body?
Do you know anything about?

THANKS A LOT
Posted 7/29/2010 8:56 PM (GMT 0)
Dear friends I just found out that ENT specialist don't want to help me.
He is saying my blood test results is normal.
I am in sock,no doctor want to help me.......
ENT,internal specialist,rheumatologist......
I am so,so sad......
Love Slada
Posted 7/29/2010 11:17 PM (GMT 0)
Slada,
I am so sorry that you are going through this, but most of us here have gone through many doctors, with them telling us it's just depression, or anxiety, or lupus, or even MS and many, many other mis-diagnosis. This is why a lot of us do whatever we have to in order to be seen by a Lyme Literate MD. They are almost the only ones who are willing to look deep enough into our case to get to what is really causing all of our health problems.

To top it off, the tests that are available at this point in time are not very reliable & it is up to the individual who is looking at the test results to interpret them properly. This is why the U.S. CDC states on their website that Lyme Disease is to be diagnosed "clinically" - by the symptoms.

I would suggest that you find a LLMD.

Lyme Disease and the other tick-born infections can infiltrate any body part - organs, joints, even the central nervous system. This is why proper treatment is so important. If the infections are just subdued, rather than eradicated, they can go on surviving in the body for decades. Then when the body is put under enough stress - whether physical, emotional, or psychological - the tick infection will resurface and start to produce symptoms once again.

I wish you the best Slada! Hang in there.
Posted 7/29/2010 11:22 PM (GMT 0)
Hi Slada,

I feel bad for you too..  I know you live in Canada so I guess it's different there.   A couple of people that I knew from Canada traveled to the U.S. to get help.  

Slada, how about buying a book about natural medicine as that is what made me better?  Just a thought since none of your doctors are helping you.. 

Denise

P.S.:  Slada, you do speak French?  Just curious..  

✚ New Topic ✚ Reply
123