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jeanneac
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Date Joined Feb 2009
Total Posts : 1875
   Posted 6/3/2010 1:43 PM (GMT -6)   
Ok, so I have been on the inflammatory bowel disease forum and then the lupus forum. I do have some sort of inflammation in my large colon but I saw my dermatologist today. about 3 years ago, I developed an under the skin rash. She biopsied it and they thought it was skin scleroderma. After this though, I got the colitis and then joint aches extreme fatigue. HOWEVER, the pathology report had a ???? possibility of lyme disease!!!!!!! Now that I am having all these problems, one of the latest is a positive ANA, she wants to re-biopsy. I am a little scared. I've had "a" lyme test more than once and it was negative. I also see a rheumatologist. Prednisone makes me feel a lot better too. I think it is probably an auto immune thing. Do you think there is any possibility this might be lyme? Should I get some of the more sensitive tests done? Any other advice? I get another biopsy next week. I think they had a hard time calling just what I had in the skin.... In the meantime, I am in pain and need to go back to the rheumatologist for all this joint pain unless the cymbalta kicks in real soon. I start getting tired and in pain this time of day. It's also when the rains come. Thanks!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/3/2010 1:57 PM (GMT -6)   
Yes, you could have Lyme. There are some skin disorders that are known to be caused by Lyme (Acrodermatitis chronica atrophicans, etc.). The positive ASCA could also be from yeast allergy/overgrowth. Lyme can cause positive ANA. The "regular" Lyme tests are very inaccurate. Best way to test for Lyme is via Western Blot done through IGeneX lab (see http://igenex.com ) and take the results to a Lyme-Literate MD for interpretation. If you post your location (best way is to make a new post requesting LLMD referral), there may be others here who know of nearby Lyme-Literate MD's. Improvement on Prednisone is also consistant with some Lyme cases (mine included), but Prednisone is not the right thing to do to treat this disease. For what all Lyme can to to the GI tract, see http://thehumansideoflyme.net/viewarticle.php?aid=62

Take care,
-Razzle
Chronic Lyme Disease, 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 on TPN due to bowel problems.
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver (topically & nasally), probiotics, Milk Thistle, Magnesium, homeopathy.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/3/2010 4:09 PM (GMT -6)   
Hi Razzle, thanks so much for the info. I asked my rheumy a few years ago if he thought it was lyme and he said no. I like him a lot but he may not be lyme literate. He said there is no lyme in this area of the country and that is NOT TRUE. People might not know this but there is lyme in the southeast (I know from someone who researches lyme disease and ticks.) I have a history of tick bites too. One about 15 years ago gave me a small rash but a doc told me the tick wasn't on there long enough to make me sick. That was about 15 years ago before all this stuff started happening to me.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/3/2010 7:53 PM (GMT -6)   
If you have a history of tick bites and rashes, I'd say your chances of having lyme disease is about 99.9%. Too bad you haven't seen an LLMD to get a Western Blot test and a proper dx back when it would have been so simple to treat with abx in just a few short months.

It's not too late, but if I were you, I would run, not walk, to the nearest LLMD and get tested and if you have lyme disease, begin treatment "yesterday".

I wasn't dx with lyme disease until 10 years after I had it. Too bad I had to suffer all those years before I got a proper dx. Most every doctor, with the excepting of a qualified LLMD, will tell you lyme disease doesn't exist in their state. They are so ignorant they should be sued and put out of business for the harm they have inflicted upon thousands of people who have suffered needlessly with this disease. Our blood is on their hands.

Lyme disease mimics 300 conditions lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator. Most PCP's will tell you that you have anything and everything except lyme disease. Until you have a proper dx from a LLMD, you should assume you have lyme disease until proven otherwise. Oh, what I would give to have fifteen year of my life back...

The sooner you get dx and treated (assuming you have lyme disease) the better your chances are of recovering from it. But let me tell you, at this late stage of the game--it ain't gonna be easy. sad

Gary

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/3/2010 8:05 PM (GMT -6)   
Yea, early on 13 years ago, I developed fibromyalgia and I looked up a lot about lyme but nobody thought I had it and I got to feeling better so I basically dropped it. I think my symptoms were masked by antidepressants. I am familiar with all the diseases that it mimics. I knew a lady with chronic lyme.

I think my dermatologist will order a western blot and I will wait to find a lyme specialist from you. I just e-mailed you for your list.

So, if the western blot is negative, does that mean I do not have lyme?? IS that an accurate test? I heard the damage can be horrible to your heart, joints, even brain.

Do they do IV therapy?? Doesn't it make you feel real bad or worse until you get better? Ugh!!!!!! I sure hope it isn't lyme!!!! Of all things-:)

THanks Gary.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4284
   Posted 6/4/2010 6:08 AM (GMT -6)   
Hi jeanneac,
 
I know a lady who was diagnosed with fibro for 30 years and it turned out to be lyme.   Today she is completely well from the chronic lyme (she never took 1 antibiotic as she  didn't believe in them, she used alternative medicine).  I believe it took her about 1 year or 1-1/2 years to get totally better.   Not only that, my tests kept coming back negative for lyme because my blood was being sent to the wrong labs such as Quest and Labcorp.
 
One of the most accurate labs is IgeneX and you can order a free testing kit from them but you will need a doctor's signature to get the testing done.   There are good reasons why IgeneX is so accurate but that's another post. 
 
 
Lyme is the #1 fastest growing infectious disease in the world, not only the U.S (there are no borders).  The only thing you have to lose by getting tested by IgeneX is money (yes, I know times are tough). 
 
I was very sick from chronic lyme and a coinfection.  I became infected in 1995 and have been well for over 4 years (using alternative medicine plus lots of detoxing).  Thus lyme is very treatable once you find the protocol that works for you.   I personally believe in becoming your own advocate and learning as much as you can about this disease by reading books, researching, and reading forums. 
 
If you do have lyme and start treatment, you will prevent getting worse as the years go on. 
 
I hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/4/2010 4:32 PM (GMT -6)   
Thanks Denise. I think it is worth getting the IgeneX test to put my mind at ease. If it is negative, does that mean that I most likely don't have lyme then? I know I have an auto-immune thing going on but it worried me a bit when we looked at my first biopsy and they had a ? lyme on there! I think there are stains and other tests you can do on skin biopsies to see if it is lyme or not. I am going to look them up and tell my doc I want these tests. I dunno, maybe they don't know all the tests to order. My rheumy thinks I have a mixed connective tissue disease. I fit the symptoms to a T. After reading more about lyme, I am not sure this is what I have but since I've had tick bites, I need to get it checked. Thanks so much for your response. The people on this forum are very nice.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4284
   Posted 6/4/2010 5:51 PM (GMT -6)   
Hi jeanneac,
 
You are very welcome!  The test results are not clear cut meaning it's not either 100% positive or 100% negative though in my case, I was alllllll the way positive.   There are false negatives, false positives. 
 
Have you read the Sticky Thread on top called "New to Lyme?  Start Here!" as it explains the bands and what they mean.    Lyme is also a clinical diagnosis as many lyme literate doctors will diagnose a person just by their symptoms.    Yeah, I know, can get confusing.. 
 
Just from my own personal experience with helping many people I think since they had a ? lyme from your first biopsy you most likely have lyme.  
 
Your best bet is to get tested by IgeneX and see a Lyme Literate Medical Doctor (LLMD).   Please keep in mind that lyme is very treatable!  I sense your scared which is normal, I didn't ask to get infected but I did and I became better.   This may not make much sense to you but my getting sick taught me so much about myself, I learned a healthier way of living (prior to lyme I ate junk, didn't exercise, never knew about detoxing, and so much more).  I am a much healthier person today all because I became infected with lyme.   Yeah, sounds really kooky but it's the truth.  
 
I copied the bands below from the Sticky Thread on top:
 
 
Western Blot Bands description:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
 
Please get tested by IgeneX so at least you know but remember that no lyme test including IgeneX is 100% accurate though they come pretty close.  
 
Maybe some others will post about their IgeneX test results and explain the Western Blot better.
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/4/2010 6:42 PM (GMT -6)   
Thanks Dejavu. Yea, I totally understand what you mean about a disease changing your life for the better and teaching you a lot about yourself. I feel the same, I just wish I didn't have to learn it this way!! LOL... I am sure you wish the same.

I will get my derm doc to order this test next week. I bet my insurance won't pay either. Ha! Ha! What else is new? On the skin biopsy a few years ago though, they did give me another diagnosis of morphea but apparently they put ? lyme ? mycosis fungiodes (it's a T cell lymphoma of the skin.) Well, I had plasma cells in the biopsy and those are the precurser to B cells, a different kind of lymphocyte. So, I don't get that. I may ask for my next biopsy to go to another lab this time. I don't want all that wishy washy stuff. I know there are other stains they could do to give more/better answers. I used to be a lab tech but a lot has changed since I went to school.. It's quite likely that this is truly an auto-immune disease but you can't be too careful.

Thanks so much for all your help. People on this forum are awesome! Gonna start looking at the links and check out your experience on utube.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/5/2010 10:43 AM (GMT -6)   
jeanneac, I have just skimmed thru your posts and just want to reiterate something: Always request, ahead of time, copies of ALL lab reports. And then take it upon yourself to learn something about the results. That you were once a lap tech sure does help!

This happened w/ both my PCP and my (no longer) LLMD: some of the tests that were ordered were not done by the lab. I knew it, but neither Dr noticed. All they do is skim for results 'out of range'.

I dont' remember if this has been mentioned, but a CD57 is also a very helpful test. Not everyone's numbers are low w/ lyme, but if your numbers are low, this does generally indicate lyme. I am not expert on it, but as ill as you've been and as many systems whatever this is has affected, I would think Lyme might be indicated on a CD57, if you do, in fact, have Lyme.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/5/2010 11:14 AM (GMT -6)   
Thanks +Lyme. I definitely plan on having a CD57 test!! I saw it the other night when I was looking up some stuff on Lyme. That should be a simple thing to get done and from what I read, it is almost the best test they have now for Lyme b/c the other tests don't always go positive.
Do most people with Lyme have positive ANA's and other auto-immune markers like RF? I also have a positive marker for crohn's disease but the biopsies do not show that I have crohn's. My PCP always gives me copies of my results but thanks for reminding me to get copies from the other docs too. Otherwise, we don't always get the right picture and ask questions. Sometimes the doctor "interprets" their version of the lab test and give them to you via their version. It isn't always right. Sometimes docs don't always know the proper tests to order, especially for strange, uncommon things.

When I had my skin biopsy at mayo, they said it was granuloma annulare and first of all, the rash is not on my hands, wrists, ankles or feet which is most common in GA. And it is not circular in any way and looks nothing like the pictures I have seen of GA.

They say lupus and lyme are both great imitators and it looks like I could have either. Someone else here said a lot of people with lyme have poisitve ANA's.

Thanks again for your insight and advice!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/6/2010 1:05 PM (GMT -6)   
Well, I sure don't know it all, jeanneac -- in fact, I need to ask what ANAs are?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1875
   Posted 6/6/2010 3:18 PM (GMT -6)   
Oh, ANA is short for anti-nuclear antibody. People with auto immune diseases like lupus and RA have a positive ANA.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!

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