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1688444 tn?1305693229

Lupus or Fibromyalgia ANA positive 1:320 titer homogeneous

At 16 I was CMV positive and sick as death. My mother had me tested for everything she could until we got that diagnosis. Needless to say it wiped me out. I also had issues with my hands and feet seizing up in the cold. Doctors actually told me that I grew too fast and my nerves were trying to catch up. lol. Well, at 21 I was t-boned by an 18 wheeler who had slowed down to 72 when he hit me. At 22 I had Strep for 8 weeks, could not get rid of it. Doctor said enough was enough with all my other aches and pains, mostly back and pelvic issues. He tested my ANA and all I know is that it was high and positive. He suspected Lupus. Sent me to a Rheumatologist. This dr said I had Fibromyalgia. This was 10 yrs ago. I have had complicated pregnancies, that being an understatement. Almost four yrs ago I gave birth to my last. My stomach issues started getting worse.

When my baby was 9 months old I went to the ER with the worst migraine EVER. He used me as a pin cushion. Attmepted 6 times to do a spinal tap. Then the specailist did it. Then 10 days later a blood patch. Since then I have had a headache EVERYDAY and back pain. Some days are hard to function at all. This has been 3yrs now last month. Last summer I was diagnosed with Colitis and Irritable Bowel. I can no longer take Advil, etc. Also found out that I have unexplained lung scarring on my right lung. I have had issues with my left kidney now with a year of constant infections to 8 yrs of kidney stones. This past March this kidney has been hurting and I don't know why. I had to see a Vascular Surgeon last Oct due to two lumps from an IV from the Colonoscopy in June. He told me my problems with my hands and feet is Raynauds. Finally a name for it. He laughed when I told him what the dr told me yrs ago about my nerves trying to catch up.

The nurse at my drs office said I should have my ANA rechecked. Sure enough it was ANA positive 1:320 titer homogeneous. The only symptoms I do not have with Lupus is the rash and seizures. Could I still have it? Was I misdiagnosed 10 yrs ago? Can you have both Fibromyalgia and Lupus? I saw a Rheumatologist who took 8 different vials of blood from me and my urine. I go back a week from tomorrow. I have been in sooo much pain. My bad days are starting to outnumber the good. I am getting depressed. Please help?
8 Responses
Avatar universal
  I believe you actually have Lyme disease.  All over these forums are people like you, who constantly get missdiagnosed.  Lyme is an EPIDEMIC now but it is being ignored.  EVERY symptom, including heart palpitations, "female issues" and cysts.  You do not need a tick bite or a "bullseye" rash to get lymes and it is GROSSLY under reported because doctors have no idea what they are seeing  so you will get a diag of ALS, Lupus, MS, Chronic Fatigue, etc.  If left untreated, you will become paralyzed over time.

   The Labcorp tests for Lyme are WORTHLESS!  tHEY LOOK FOR AN ANTIBODY YOUR IMMUNE SYSTEM IS TOO DISSABLED TO PRODUCE.  You need a test that actually looks for the DNA of the bacteria in its 3 different states (mycoplasmic, spirochetal and cystic)

  Contact ILADS or go to www.ilads.org to get information on how to find a Lyme doctor who will not think you are crazy.  google CANLYME and look at symptoms, you are spot on.  Finally, go onto Youtube and search for a video of a documentary entitled "Under Our Skin", watch the clips (5 or so)  I bet you will see yourself.  Do some research.  Dont accept your current BS diagnosis.

  Finally, i believe you have an intracellulal chronic bacterial infection.  No standard doctor is gonna figure this one out and you will constantly be missdiagnosed. Don't waste time.  The longer you go, the harder it is to treat, but you can get better by long term DNA disrupting antibiotic treatment.  PM me if you need more info.
1688444 tn?1305693229
This thought has actually crossed my mind I just never looked into it. I tried to PM you but it would not allow me to do so. I had heard of people being misdiagnosed with FM and had Lyme. Is this good news? Or is it bad? I fit almost ALL symptoms and you are right, I saw myself in what I read. Thank you soooo much for bringing this to my attention because I would not have asked the dr. I guess I shall see what the bloodwork says at the Rheumatologist. I changed my appointment to a week from Friday so my best friend could take me. I am really nervous about it and would rather her go with me. We are more like sisters and pretty much have been for 20yrs now. Man I am getting old. lol. I know it really helps to have the right support.
You may have changed all of this for me. I thank you. Should you be right I would have been misdaignosed....again. May I ask how you know all of this? That is quite a shot with the bacterial infection thing. :)    I do have the chemical sensitivity and the spots with my vision as well. There is just way too many things to type and honestly depresses me to admit them. I am way too young to feel this way. I have not felt my age since I was 20! My children deserve a better mother, my husband a better wife. I'm just so tired of being tired. Thank you again for your responce. I will be staying in touch with you if that is ok.
Avatar universal
  I have talked to several researchers, all of them highly esteemed, that know that chronic intracellular bacterial infections can do major harm if left unchecked.  Lymes disease not only has the Borrelia Burgdeferi bacteria but also infectious Mycoplasma bacteria w/ coinfections, Bartonella, Babesia, Ehrlichia, Rickettsetia and others/combinations.  I have Lymes, Bartonella and Babesia w/ possible Mycoplasma Fermentans Incognitus.  I come here to MEDHELP and see all the suffering people asking for advice from people.  The Doctors here are well meaning, but by and large they are NOT familiar with Lymes or what Lymes does to a person mentally and physically.  So Dr's see the afteraffects and not look at WHAT IS CAUSING THIS TO HAPPEN.  Borrelia can be devastating if left unchecked or missdiagnosed.  


Research www.immed.org and look at the Autoimmune disease section.  You will learn about Mycoplasmas.   Also check out and google the JEMSEK CLINIC a VERY well respected Lymes doctor who has been treating infectious diseases for years.
11175195 tn?1437399296
Complement Component C3  75.8  
Complement Component C4  15.7
Ana Ifa  Profile  
           Homogeneous  1:320  
           Note  (SEE NOTE)  
           Ana Ifa  See patterns  
Lyme IgG WB Int  Negative  
           P23 AB IgM  Present  
           P39 AB IgM  Absent  
           P41 AB IgM  Present  
           Lyme IgM WB Int  Positive  
Babesia Igg & Igm AB  Profile  
           Babesia Igg AB  <1:10  
           Babesia Igm AB  <1:10  
Anca Panel  Profile  
           C-Anca  <1:20  
           P-Anca  <1:20  
           Atypical Anca  <1:20  
           Myeloperoxid AB  <9.0  
           Anti-Prot 3 AB  <3.5  
Anticardiolipin AB,Iga/G/M QN  Profile  
           Anticard IgG  <9  
           Anticard IgM  12  
           Anticard IgA  <9  
Bartonella Dna PCR  Negative  
Can anyone tell me if its lyme or lupus or both? I have taken meds for lyme 3 times already, had iv meds and still I seem to come back positive with the igm all the time.. My titer for my ana ifa was 1:640 not even a month ago now its gone down but I know its only one dilution but I am just so confused about this lyme? I go back to the rhumey the 9th of dec but I want to be prepared to ask as many questions I can... thank you.
1530171 tn?1448133193
Hi Jillian.

This is an old thread and Ewford has not been around for 3 years!

Would please copy and paste your question (new post) at both the Lyme's Disease and Lupus Communities?

Niko

11175195 tn?1437399296
Thank you and those are the same ones above...
Avatar_f_tn



Jillian222
  
15 hours
.
To: ewford
.


Complement Component C3  75.8  
Complement Component C4  15.7
Ana Ifa  Profile  
           Homogeneous  1:320  
           Note  (SEE NOTE)  
           Ana Ifa  See patterns  
Lyme IgG WB Int  Negative  
           P23 AB IgM  Present  
           P39 AB IgM  Absent  
           P41 AB IgM  Present  
           Lyme IgM WB Int  Positive  
Babesia Igg & Igm AB  Profile  
           Babesia Igg AB  <1:10  
           Babesia Igm AB  <1:10  
Anca Panel  Profile  
           C-Anca  <1:20  
           P-Anca  <1:20  
           Atypical Anca  <1:20  
           Myeloperoxid AB  <9.0  
           Anti-Prot 3 AB  <3.5  
Anticardiolipin AB,Iga/G/M QN  Profile  
           Anticard IgG  <9  
           Anticard IgM  12  
           Anticard IgA  <9  
Bartonella Dna PCR  Negative  
Can anyone tell me if its lyme or lupus or both? I have taken meds for lyme 3 times already, had iv meds and still I seem to come back positive with the igm all the time.. My titer for my ana ifa was 1:640 not even a month ago now its gone down but I know its only one dilution but I am just so confused about this lyme? I go back to the rhumey the 9th of dec but I want to be prepared to ask as many questions I can... thank you
1530171 tn?1448133193
Jillian, you need to go to the green box which says "Post a Question"
both here and at the lyme's disease community and paste your post, because you're still at the bottom of the this thread.

Do you have an LLMD (Lyme Literate Medical Doctor)?
Chronic Lyme's Disease can take years of treatment to resolve!

ANAs fluctuate according to the amount of immune response
to pathogen activity. When the pathogens are in inactive phases,hiding in tissues, etc.the antibody production is lowered, thus lower ANA titres.

Which Lab are the above results from?
If they're not from IGeneX Labs in regards to Lyme and its Co-infections, I'm afraid they may not be very useful, since accuracy is imperative!

For lupus, the Rheumie should look for the presence of 4 out 11 diagnostic criteria for SLE diagnosis, as recommended by the American College of Rheumatology, which again will take time. Just do a search for this.

NIko
11175195 tn?1437399296
Thank you I just did a post.... Ne to this and again thank you...
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