posted
My goodness beginning to wonder what in world is going on.
Now my md thinks i have an auto immune desease. Has anyone else been told this.
He thinks this because for the last month my body has shown bad pancrease then a day later fine bad kidneys then a week later fine now bad liver enzimens. I have sever muscle weakness, joint pian really bad since pancreas issues.
Oh and one test shows im low in postassium now im to high in postasium. And i show enemic and now im not enemic ugh
Anyone else out there with out of whac blood work? or Auto Immune deseases? with lyme
Posts: 112 | From Ohio | Registered: Aug 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had a lung specialist thinking I had autoimmune.
But tested neg for thyroid antibodies, RA, Lupus,
Weggoners, as other assort. indicators. A year
later I found Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Lyme can induce autoimmune disease, as most if not all autoimmune disease starts from a weakened, or improper immune system function.
If the Lyme is reduced to a minimal level, many of the other autoimmune symptoms will go away also.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Yes, I was just diagnosed with a "rare autoimmune disease" which I am guessing is not AT ALL rare for those of us with Lyme.
It was diagnosed by a punch skin biopsy, and it is called small fiber neuropathy. I see my doctor tomorrow, and will most likely start IVIG treatment.
It is caused by Lyme in our cases, though can be caused by other things as well. It is a degenerative disease and explains almost all of my symptoms, as well as why I have done nothing but go downhill the last two years despite aggressive Lyme treatments.
My symptoms include erratic blood pressure, tachycardia, loss of feeling in hands and feet, face as well, coldness in extremeties, tingling, numbness, loss of balance, can't hold on to things (dropsies), hard to stand (feel like I'm going to pass out unless I'm laying down), burning feet, painful calves, the list goes on.....
Luckily my LLD is a neurologist or this would have never been picked up. As I read how many of us have neuropathy, and hear people say how it just "goes with the territory", I wonder how many would benefit from having the biopsy done and getting the specialized treatment.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Hi Tracy! I have the same symptoms and have been told repeatedly by various docs that I have one or more autoimmune diseases. It did attack my thyroid which had to be removed.
I think this is why we are more susceptible to lyme disease. Lousy immune systems. And those, I am told, are hereditary. They certainly are in my family...Mom and cousin died of ALS, grandmother and daughter had serious ulcerative colitis and daughter had most of her colon removed, son showing symptoms.
My pain doc wanted a neuro eval. They did the swallow test which showed my problems. But I am too weak to go through any more testing right now. These bicillin shots have me flat on my back, literally!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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quote:Originally posted by farraday: have been told repeatedly by various docs that I have one or more autoimmune diseases. It did attack my thyroid which had to be removed.
Have you been checked for celiac disease?? It can cause Hashimoto's thyroiditis. Many with Lyme have celiac disease.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Good point. I don't know but will certainly ask my doc in two weeks. Thanks for the tip!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Tracy9 what you discribe sounds like me. I am cold as ice then will get warm and hot. hands and feet first then the rest. My leg is numb sometimes around my mouth feels that way to. Calves of legs ache to. I also feel like im gonna fall over when i walk. Joints are achy worse than before since pancreatic attack.
Muscle weakness is bad I dont have the symptoms of Celtic desease.
My left side aches soooo very tired. Feeling of pins and needles being stuck in me here and there. Joints are swelling i can tell and ache. What concerns doc is my irratic blood work. Hitting each one of my organs. But hes not lyme litterate. So i go to lyme doc wed perhaps this wont look greek to him. It sure has me concerned.But explains the weakness. i force myself to move. Takes everything out of me. Thanks guys
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
I thought lyme was considered an auto immune disease all on its own.
?
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
peacemama in autoimmune the antibodies attack and
destroy for an unknown reason.
In lyme the antibodies just turn stupid and let everything in.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I was told that I may have an auto immune disease too. I don't know what it is yet though. I also have Hashimoto's.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Shosty
Unregistered
posted
For some people, Lyme can trigger an autoimmune disease. For some people, the autoimmune disease continues even if the Lyme is addressed with years of antibiotics.
For instance, I did 6 years of antibiotics and my ANA is now sky high, much higher than it was at the start (I also had a skin biopsy showing lupus). I get very sick in the sun.
Research is needed to clarify whether persistent illness w/autoimmune markers present, means the bacteria are still there, or, on the other hand, whether the autoimmune illness continues even when the bacteria are gone.
The implications for treatment are obvious: whether to continue antibiotics is the biggest question, in my opinion.
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Pinelady
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posted
Your right shosty needs a lot more research. They may find yet another undiscovered virus or 2 that sets it off.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Now my md thinks i have an auto immune desease. Run away Run away fast!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
It us my belief that autoimmune diseases come about because of an ineffective immune response, which allows other pathogens to invade the body. Lyme can induce this condition because it weakens the immune response.
These other pathogens will determine which autoimmune condition you end up with. Bacteria, viruses, are under attack by the immune system, but cannot be removed. This results in what appears to be the body attacking itself.
The body is actually attacking an actual threat, but it is not removed as it would be in a healthy individual. Chronic inflammation is one result of this cycle.
For this reason, Low Dose Naltrexone can help bring the immune system to a more normal state until the natural immune response is restored.
I have spent a great deal of time digging into this, as I have Crohn's Disease and needed to know what was happening, in order to treat it.
In my case the cause of the immune dyfunction is unknown, but I suspect the XMRV retrovirus, is responsible. I have not proven that to my satisfaction yet. It is speculation at this point.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I was diagnosed with Sjogren's disease after about 5 months of Lyme treatment. I'm taking Plaquinel for the Sjogren's which also helps Lyme. It seems to be helping.
Posts: 86 | From California | Registered: Oct 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Well I am going on IVIG to treat my autoimmune disease, but Low Dose Naltrexone is another option.
My Lyme is much more under control now, but has caused the autoimmune disease. My Lyme symptoms are actually minimal while the symptoms of the small fiber neuropathy are major.
My CD 57 has gone from 32 to 120 in a little over a year.
This all tells me I've been fairly successful at treating the Lyme, but it still needs to be addressed, but now the primary issue is the autoimmune disease it has caused.
Small fiber neuropathy is a separate disease, completely separate from Lyme disease, though caused by it (as well as other things, including Bartonella.)
The only test for it is a punch skin biopsy, which of course mine was positive.
I am hoping to start IVIG treatment ASAP and get my life back. The treatment will be extremely difficult, but I will do anything to get out of this bed everyday.
I am so thankful my LLD is a neurologist and tested me for this. He also told me that the testing for this disease has only been available for a few years, and I am fortunate they are even able to identify it now.
I bet there are so many of us who aren't getting better who are in my shoes, where Lyme is no longer the primary issue, but we don't know it. I never would have known this cluster of symptoms was something else.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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