New here....feeling terrible, have LOTS of questions

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/10/2009 11:27 AM (GMT -6)   
Hi,

I've been hanging around a number of forums on this board for a while now. But I've never posted in this forum before.

In the past 18 months I've been diagnosed with fibromyalgia and multiple autoimmune diseases: autoimmune hepatitis, SLE, celiac disease, rheumatoid arthritis. I've had Hashimoto's thyroiditis and psoriasis for many years. I'm on so many meds I can hardly keep track of them. I've been trying to prod my various doctors, especially my neurologist, into helping me figure out where my unexplained neuro symptoms (blurry vision, double vision, vertigo, ataxia, brain fog, memory issues, etc.) are coming from....so I asked to be tested for EVERYTHING: B-12 deficiency, Lyme, multiple sclerosis, you name it.

Guess what?! I tested positive on the Lyme ELISA test.

1. Does this mean I probably have Lyme? Or do I have to wait for the results of the Western Blot test?
2. Is Lyme disease considered to be a trigger for autoimmune diseases or is it considered to just "mimic" them? Or is this a controversy?

I find it hard to believe that I don't actually have lupus, for example, because practically half of my family members on my father's side either have lupus or died from complications of lupus. Lyme disease is not hereditary....but a tendency to develop autoimmune diseases is.

Please help me understand this....

Thanks in advance,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/10/2009 3:44 PM (GMT -6)   
I guess part of what I want to know is whether or not ALL of my illnesses could be Lyme disease, or if I might have Lyme plus multiple AI diseases because the Lyme triggered them??

Anyone out there have an opinion? Is this controversial??

I'd really love to hear from someone out there! :)

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 12/10/2009 5:42 PM (GMT -6)   
Hi JoAnn -
 
Guess I shouldn't be surprised to see you on this forum.  So much to tell - maybe we'll just hit the high points first.
 
Yes - Lyme could cause a lot of the problems you're seeing.  Yes - it is an imatator of many diseases.  The spirochetes can literally bore their way into any of your body systems.  Most people have multiple systems affected.  But everyone can have different systems that are affected.  That's why the list of possible symptoms is sooo long.
 
Be sure and get a copy of your WB results.  Please post them.  Ugh ... so much to get into as far as outmoded CDC diagnostic criteria and treatment.  For now let's just say there are Lyme specific bands that ONLY show up with Lyme.  There are reasons why antibody testing misses a lot of cases of Lyme.  If even one Lyme specific band shows up, the Lyme connection should be checked out.  You'll probably need to see someone who is experienced at diagnosing and treating Lyme. 
 
If you've had Lyme for a while, your immune system has probably been trashed.  Low B12, D, DHEA, cortisol etc. are common.  There are a number of coinfections that can come from the tick bite itself.  You'll need to be tested for these too since the Lyme treatment would be ineffective til the coinfections are treated (includes Bartonella, Babesiosis, Erlichiosis - forgive my spelling I don't want to dictionary it right now).  With a trashed immune system, there are other viruses and bacteria that can set up house keeping in your system (mycoplasma, HHV-6, Cpn).  Things like mycoplasma and Cpn are associated with chronic fatigue, MS and fibro. 
 
Even after treatment, I think some people are left with joint and fatigue/ fibro problems.  Maybe Dagger will see this topic and respond.  Think she has left-over fibro.
 
Lyme could well sensitize your system.  It may not be the cause of all your conditions, but is probably an aggravating factor. 
 
It's bad news to have Lyme - but good news in that you may be able to improve many of your problems by treating it and any other coinfections you have.
 
That's the quickie tour.  I'll try to post more later.  And be sure and ask any specific questions you have.  There is a lot of good info in the Lyme stickie.
 
I'd still like to see you consider a neuropsych exam so you have more info on deciding where you stand career wise.  Mine was very helpful.  I got my SSDI award letter the other day.  Don't know if that was the deciding factor, but the neuropsych DR pulled all my symptoms and problems together.  I think his description of how it affected my ability to work was proabably most helpful.
 
Hope this helps.  I feel your pain - or at least a lot of it.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 12/10/2009 8:48 PM (GMT -6)   
Yes, I think you should get a WesternBlot test done - that is the better test of the two (ELISA vs. WesternBlot).

I have one gene for Celiac Disease and also Lyme. I believe the Lyme turned the gene "on" so that I have an inability to tolerate gluten (biopsy negative, but response to gluten free diet was positive). I also have a diagnosis of "Secondary Lupus-like syndrome" but nobody bothered to clear up what this was secondary to...but after my Lyme diagnosis, I believe it is the Lyme that is causing the lupus-like presentation of symptoms (along with elevated ANA, ESR, etc.). I also have a lot of other issues that also I believe are triggered by or caused by the Lyme (gastrointestinal inflammation and dysmotility, etc.).

I think Lyme can trigger AI diseases as well as mimic them. It really depends on when the AI disease showed up vs. first exposure to Lyme. As for AI diseases running in families vs Lyme, Lyme can be passed along from Mother to Baby at birth or through breast-feeding, and may also be transmissable sexually (Lyme is related to Syphillis...). And if many members of the same family live in close proximity to one another, they may have all been bitten by insects carrying Lyme at some point, and those with Lupus predisposing genes may have a more Lupus-like presentation when exposed to Lyme. But this is all my own opinion based on research I myself have done as a fellow Lyme patient.

The best way to really know for sure is to discuss this with a Lyme-Literate physician, which is a physician who is experienced with the true nature of Lyme Disease. There is an organization of such physicians known as the ILADS (International Lyme and Associated Diseases Society) - check out their website at http://ilads.org/

You might want to check out the thread at the top of the formum titled, "New To Lyme?.......Start here!"

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/10/2009 10:59 PM (GMT -6)   
nasalady - Glad you decided to post on this forum. Before I was diagnosed with Lyme and coinfections I was told I had fibromyalgia, irtritable bowel syndrome and possibly crohn's disease, reflux, interstitial cystitis, burcitis, borderline adrenal insufficiency (adrenal fateague), severe sleep apnea, anemia, endometriosis, neuropathy, chronic sinusitis, TMJ, mayofacial something-or-other, scoliosis, irregular heartbeat, heart murmur, insomnia, sciatica, osteopena, rosacea...the list goes on. There was no explanation for the rapidly worsening vision, brain fog, word retrieval issues, and anxiety. I had chronic neck and back pain, foot pain, and shoulder pain. All of my joints cracked when I moved. Although I saw many doctors over a period of more than a decade looking for a central cause of these diseases, it wasn't until last Fall that I was finally diagnosed with Lyme. To me it seems unlikely that someone would have so many unrelated things wrong with them. My current diagnosis feels right and explains everything I've been experiencing for so long. Maybe that is the case with you, too.


If you tested positive on the elisa, I hope you will follow up with a Western Blot processed by IgenX lab (they do the most accurate testing) and read by a Lyme Literate Doctor in your area. That is how you will get the most accurate result. It would be a good idea to see a Lyme Literate Doctor to talk about your symptoms, too, because sometimes Lyme is diagnosed clinically (because of suppressed immune system issues). If you do have Lyme, chances are you have coinfections, too, and they can cause a lot of symptoms. If you are correctly diagnosed, then at least you will have direction on treatment.

Take care - Rose
I have Lyme; it doesn't have me.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/11/2009 11:58 AM (GMT -6)   
Thank you so much for your responses, Rich, Razzle and Rose! I appreciate all of the input!

I saw a new neurologist yesterday.....he wants me to get the Western Blot test done, as well as a lumbar puncture and a spinal MRI. He says that from my previous blood test results, I'm deficient in B-12 as well. He identified the cause of my double vision as 4th nerve palsy. I like him....he listened to me and took me seriously!

I'm still puzzled by the Lyme - autoimmune connection....it confuses me a bit because Lyme weakens the immune system, right? But my immune system is still feisty enough to attack multiple organs (liver, thyroid, intestines, skin, etc) and cause quite a bit of trouble! Or is it Lyme that's actually attacking my organs? Or both??

I guess I need to calm down and wait for the WB results. :)

Many of my family members live in different states.....there are some that I've never even met, just corresponded with by email, but they have some of the same autoimmune diseases that I do. So there is some sort of AI disease - genetic predisposition in my family. But I do know that AI diseases require a trigger, and it very well may have been Lyme that triggered some of them in me. Plus Lyme may be making the damage to my organs worse than it would have been.

I must confess, I'm excited by just the possibility that taking some antibiotics could make some of my conditions go into remission or even go away completely! Wow!

More soon,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 12/11/2009 1:20 PM (GMT -6)   
Hi nasalady,

I'd just like to point out that the ELISA is a very precise test. It does have issues- because it misses something like 30% of the people with Lyme disease, but it also have an extremely high specificity. I'd say a postive ELISA points to Lyme as much as a western blot.

As for the AI diseases, I've heard a bunch of theories. One is that Lyme mimics them, and people get mis-diagnosed with them. However, I have also heard that Lyme can trigger them- Lupus was mentioned specifically there, actually. My doctor believes Lyme can trigger lots of other illnesses- like Parkinsons, MS, AlS, Alzheimers etc. In his opinion, if you catch the Lyme earlier enough, you can reverse the damage, and recover completely from those illnesses. If you catch it late, you can stop their progressions, but may be left with illness still. (if that makes sense).

But a lot of the other things you have listed are really common with Lyme. Hypotensions, GERD, restless leg syndrome, psoriasis, sleep apnea are all really, really common.

Does your rheumatoid arthritis respond normally to the treatments? The problem is, sometimes, doctors will diagnose you with the closest thing they can think of, even though you might not fit the diagnostic criteria. There are pretty rigorous blood tests for Lupus, but I have a family member with lyme who was diagnosed with RA with no supporting evidence- it was just the closes thing to his symptoms the doctor could think of.

But if you have Lyme, then you don't really need to know what causes what. Worse case, you only get rid of the unexplained symptoms (and probably make some of the other ones a little better). Best case- you get rid of a bunch of those other conditions too. I know it's confusing, and you probably want to have someone tell you exactly what is causing each symptom, and exactly what to expect from treatment, but with Lyme, that doesn't really happen. There's too little knowledge around it right now.

I would second everyone's advice on talking to a Lyme literate doctor. They will best be able to determine if you have Lyme, and what treatments to follow.

Good luck!

Nicky
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