Dx'd Fibromyalgia...Second Lyme Test Necessary?

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RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/9/2018 11:26 AM (GMT -6)   
Hello everyone. I was recently diagnosed with Fibromyalgia (2018). Though I am pretty sure this is an accurate diagnosis I have a question regarding Lyme testing being that Fibro can mimic other illnesses. FYI - my Fibro diagnosis was made by my Rheumatologist after examining me twice, knowing my history, doing a blood workup to rule out other diagnosis's and doing a tender point test. My primary care physician concurs with the Fibro dx.

One thing that was NOT ruled out was Lyme. Back in 2011, in mid-winter in the northeast I presented with a bullseye type lesion on my back thigh. I went to my primary who dx'd me with Lyme and prescribed augmentin. She also did a Western Blot blood test. I had absolutely no reason to suspect Lyme (i.e. no tick exposure in mid winter and no other symptoms). I then followed up with my dermatologist who immediately changed my protocol to treat with Doxycycline for 3 weeks and biopsy. My dermo did not feel it was Lyme. Two independent pathologists examined my biopsy and diagnosed me with atypical granuloma annulare tissue reaction. My Western Blot came back negative which I know is not always reliable.

Fast forward...I just visited with my dermo again for my annual check-up and told her about my Fibro dx. I asked if we should do a second blood test to rule out Lyme due to previous incident. She wrote me the script for a Lyme titer (not sure if this is the Western Blot or not), but felt it probably would not be helpful. Her thoughts were the following:

1. I already was tested and diagnosed with something different in 2011
2. Even if I was misdiagnosed back in 2011 and it was actually Lyme, it was caught early and treated appropriately

My question should I even bother getting another blood test for Lyme? If I did actually have Lyme back in 2011 will I test positive if I was treated at the time? If I do test positive does it even mean anything since I was treated back in 2011? If it is negative then obviously it is a non-starter, but if a positive comes back will it even help clear anything up/rule anything out for me with the Fibro dx?
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

Post Edited (RockerGirl) : 4/9/2018 4:39:46 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 4/9/2018 11:53 AM (GMT -6)   
Welcome!

"Though I am pretty sure this is an accurate diagnosis I have a question regarding Lyme testing being that Fibro can mimic other illnesses. FYI - my Fibro diagnosis was made by my Rheumatologist after examining me twice, knowing my history, doing a blood workup to rule out other diagnosis's and doing a tender point test. My primary care physician concurs with the Fibro dx. "



Fibro is a constellation of symptoms....If you have lyme disease....that's causing the muscle pain from the "Fibro".

You wouldn't have Lyme causing Fibro. You would have Lyme disease.

You presented with a bullseyes rash in 2011...that is lyme disease. You were under-treated with the 3 weeks of doxy. The minimum treatment for a bullseye rash with no other symptoms is 6 weeks.

You were most likely on too low a dose as well. It should be 200 mg twice daily - you were probably given 100 mg twice daily.

I would do the Igene WB IgM and IgG for $250. But, you should treat no matter what the outcome of the test is. It is dependent on your immune system mounting a response and producing antibodies.

Have you had any other health issues since the tick bite...besides the fibromyalgia diagnosis?
Lyme can cause many symptoms - brain fog, memory loss, anxiety, confusion, joint pain, etc. etc.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/9/2018 12:06 PM (GMT -6)   
Hi Girlie and thank you for your response. I am not 100% on board with the bullseye definitively being Lyme in my case as it is not the only disease that presents dermatologically that way. If you look up interstitial granulomatous (granuloma annulare) they present with the same rash and can be misdiagnosed as Lyme. My pathologies were pretty specific by two separate pathologists regarding the biopsy of the rash as atypical granuloma annulare either drug induced/auto-immune/viral. They ruled out Lyme, but I was treated with Doxy as a preventative measure. I'm not sure the dosage being that it was awhile ago but can certainly check when I have a chance since I save all my files.

I wasn't trying to determine if the one caused the other (i.e. Lyme caused Fibro), but rather trying to rule out Lyme completely in order to support my Fibro dx. Hence my questions regarding will a blood test even be able to do that if it comes out positive?

My health issues seem to be pretty consistent with Fibromyalgia (and of course my ulcerative colitis). My presentation did not at all seem consistent with Lyme other than the rash.

Can you tell me more about the Igene WB IgM and IgG. Is this a specific type of Western Blot and does insurance pay for it? My insurance covered my first Western Blot via the lab at my primary's office, but I am not sure who processed the results.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

NotQuiteAntonio
Veteran Member


Date Joined Jan 2015
Total Posts : 1134
   Posted 4/9/2018 12:15 PM (GMT -6)   
I don't like fibromyalgia. Granted, I'm not saying it's not a "real" thing. I just feel like it's a blanket diagnosis for a wide variety of symptoms that could be caused by all of God knows what. It's a cop out, because the medical community doesn't have the answers, the know-how, etc. That may be a rash, uneducated sentiment, but I just don't like it.

You have all these weird aches, pains, feelings of numbness, crawling, tingling - not to worry, that's just Fibromyalgia. Take some Flexeril, Aleve, live with it.

A bullseye rash? I'm not sure what else can cause that. Maybe someone else will come along. You mentioned the skin condition, which is fair, but I'm not sure how to feel about the rare diagnoses that they pull out of the attic. What, where'd you find that? It's ironic, because they'll have you believe that Lyme/co are the rarities.

As you mentioned, the tests are pretty inaccurate. If you didn't test positive then, it's less likely you will now. I've been told the titers are even less responsive than the WB, though it's been awhile since I've read up on any of that.

You can get bit by ticks, take pictures or even bring said ticks to the doctor, develop classic signs and symptoms, and still be told that it's not Lyme disease. It's happened to me. Multiple physicians at my clinic, infectious disease specialists at university hospitals, turned down by Mayo, etc. One had the nerve to tell me Lyme disease doesn't exist in Iowa, when, though the tests do suck, we have CDC confirmed cases in Iowa.

Part of it is being ill-informed, but sometimes it's almost like there's an agenda when it comes to Lyme. Doctors turn sketchy when the word comes up. I've had them get aggressive - like, you DO NOT have Lyme disease - leaving the room visibly flustered. There's one (the one I just mentioned straight up lying to my face) who saw me in the clinic and my mother said he up and turned around, 180, as if to avoid us seeing him.

Tests are one thing. They're bound by policies, insurance companies, whatever, I can understand that, I guess. If your test results come back negative, what more can they do? I GUESS. But, lying, acting unprofessional or just outright strange when the topic arises is another thing.

That's all to say that, while they do deserve their merit in some regards, there are a lot of conditions that are on the cusp of recognition and understanding in the world of mainstream medicine. Actually, I'd say there are some that are a distance away from being appreciated as they should be. Lyme disease has been bubbling, but what about the buffet of co-infections? What about mold illness? What about heavy metals? People suffer from a complex of different things - some similar, some not. It's a melting pot.

I don't know what to tell you. I don't know what to tell myself.

With your history, symptoms considered, I would pursue TBI as the root. I'm not a doctor. Nothing against them, they're fine for what's concretely planted in medicine, but I'm not alive today, because some doctor helped me with my illness picture. The only doctors who've really helped me with this Lyme stuff is the sole LLMD I've seen, and even she's only been able to do so much, because of money and my living situation. I'm my own doctor for... 360 days out of the year. I'm pretty lazy and empty of mind, some days, but you get my point.

Listen to your gut. You're here for a reason. Not many people find their way here without something of a lead, you know? It took me weeks of my doing my own research based on my symptoms to stumble upon Lyme. Remember the ticks. Then, I had my "oh" moment. Yeah, that's it. Thanks for educating the youth on this stuff, guys. Ask 16 year old me what a tick is, what's Lyme disease. I peeled those suckers off my head, threw them onto the floor like... yeah, they'll just go away. Yeah.

Also, those tickies are alive under that snow. Super slow, in a sort of vegetative state, but they're there.

Sorry if this is messy. Consider the source.

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/9/2018 1:48 PM (GMT -6)   
NotQuiteAntonio - Thanks for your response. What's TBI?? The only thing I know that it stands for is Traumatic Brain Injury which I definitely do not have.

My gut is telling me that I don't have Lyme and that the Fibromyalgia dx is the correct dx. Especially since I am treating it with meds that are prescribed for it and they are helping. I'm here because I am the type of person that needs to feel 100% that I have thoroughly investigated and ruled out every possible alternative. I really hate dealing in the unknown. There is not a conclusive blood test for Fibromyalgia and it is therefore a diagnosis of exclusion and clinical symptoms. I have been to the neurologist to rule out other stuff and have had bloodwork to rule out other various illnesses. I have been a member of healing well for quite some time and figured I'd pose the question on the Lyme forum to just get some opinions if I'd be wasting my time to get a second Lyme test 7 years later. You guys really know best how all these blood tests for Lyme work and if they will tell me anything or not.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 4/9/2018 2:36 PM (GMT -6)   
"FYI - my Fibro diagnosis was made by my Rheumatologist after examining me twice, knowing my history, doing a blood workup to rule out other diagnosis's and doing a tender point test. My primary care physician concurs with the Fibro dx."

"1. I already was tested and diagnosed with something different in 2011"
There really isn't any testing to diagnose fibromyalgia...just that you have tender points in your muscles.
And Lyme wasn't ruled out....

So you were basically diagnosed with a tender point test. What's causing your muscles to be tender?

A skin biopsy of the rash can not rule out Lyme disease...

Also wanted to mention - Northeastern States is a hot bed for lyme disease.


"My question should I even bother getting another blood test for Lyme? If I did actually have Lyme back in 2011 will I test positive if I was treated at the time? If I do test positive does it even mean anything since I was treated back in 2011? If it is negative then obviously it is a non-starter, but if a positive comes back will it even help clear anything up/rule anything out for me with the Fibro dx?"

Yes, you should do an Igenex test...the lab specializes in tick-borne disease testing. You may or may not test positive. You weren't treated long enough. If it comes back positive...then you can feel assured you have lyme disease.
But, even a negative result - I believe you have Lyme disease. EM rash, in a lyme hot bed area, plus fibromyalgia 'diagnosis' = lyme disease.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 4/9/2018 2:38 PM (GMT -6)   
RockerGirl said...
NotQuiteAntonio - Thanks for your response. What's TBI?? The only thing I know that it stands for is Traumatic Brain Injury which I definitely do not have.

My gut is telling me that I don't have Lyme and that the Fibromyalgia dx is the correct dx. Especially since I am treating it with meds that are prescribed for it and they are helping. I'm here because I am the type of person that needs to feel 100% that I have thoroughly investigated and ruled out every possible alternative. I really hate dealing in the unknown. There is not a conclusive blood test for Fibromyalgia and it is therefore a diagnosis of exclusion and clinical symptoms. I have been to the neurologist to rule out other stuff and have had bloodwork to rule out other various illnesses. I have been a member of healing well for quite some time and figured I'd pose the question on the Lyme forum to just get some opinions if I'd be wasting my time to get a second Lyme test 7 years later. You guys really know best how all these blood tests for Lyme work and if they will tell me anything or not.


TBI = Tickborne illness.

You don't want to know what is causing your muscle pain? And have the option to get rid of it?

the Igenex WB IgM and IgG - costs you $250.

Thing is - most of us here would say you don't need the test. You had an EM - that's all you need.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/9/2018 2:59 PM (GMT -6)   
Okay, so I'm thinking it was not really a good idea to pose my questions on this particular forum. What I'm hearing here is that no one is really open to anything other than Lyme.

Although I do appreciate people taking the time to respond to me, I didn't come on here to have people tell me I definitively have Lyme. You cannot diagnose me. You may be literate in Lyme, but not in every other illness that is out there. Not one thing other than the EM rash was a symptom of Lyme. We are talking "1" symptom. There are other skin presentations of EM with central clearing that are NOT Lyme. I'm guessing no one on here is familiar with any of them. I'm also hearing that people are telling me that a diagnosis, 7 years later after treatment of the EM rash, of Fibromyalgia and living in the northeast equals Lyme. Seriously?? If I told everyone on the UC forum that presented with symptoms that they had UC that would be a serious problem.

Of course I want to know why my muscles ache (not my joints btw), why do you think I am ruling out other possibilities. Lyme WAS ruled out in 2011. It was not tested again in 2018 when I received my Fibro dx. My Rheumy told me my symptoms are classic Fibromyalgia. I really just was wondering about retaking the blood test and if the outcome would be useful to me or not. That was what my questions were about. I'm not saying it wasn't misdiagnosed in 2011, that is always a slim possibility, but that doesn't mean I don't currently still have Fibromyalgia. It just would complicate things if I couldn't ascertain accurate results from a new blood test.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 4/9/2018 3:38 PM (GMT -6)   
"Although I do appreciate people taking the time to respond to me, I didn't come on here to have people tell me I definitively have Lyme. You cannot diagnose me. You may be literate in Lyme, but not in every other illness that is out there. Not one thing other than the EM rash was a symptom of Lyme. We are talking "1" symptom. There are other skin presentations of EM with central clearing that are NOT Lyme. I'm guessing no one on here is familiar with any of them. I'm also hearing that people are telling me that a diagnosis, 7 years later after treatment of the EM rash, of Fibromyalgia and living in the northeast equals Lyme. Seriously?? If I told everyone on the UC forum that presented with symptoms that they had UC that would be a serious problem. "

I am sorry you feel this way. It's just that we see this so often...people don't treat because they haven't been diagnosed based on the EM rash..and symptoms..and history. We just want you to get appropriately treated.

I do hope you get the Igenex test and consider seeing a Lyme Literate Dr.

But, it's not my opinion. I'm not diagnosing you. The EM rash says it all.... An EM rash is a sign of lyme disease. From the ILADS treatment guidelines:


EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:
1) Adults: oral therapy- must continue until symptom and sign free for at least one month,
with a 6 week minimum.

www.ilads.org/lyme/B_guidelines_12_17_08.pdf


"As all sources emphasise that early treatment is more likely to be successful, anyone presenting with an erythema migrans rash should receive treatment without waiting for a blood test. Without appropriate treatment Lyme disease may spread to other sites as described below."

www.lymediseaseaction.org.uk/about-lyme/diagnosis/


Not everyone will get a rash. Most don’t even remember being bitten!

"However, the presence of a bulls-eye rash indicates early infection with Borrelia, the bacteria that cause Lyme disease. Even by the strict CDC guidelines for diagnosis, the bulls-eye rash itself warrants “an instant diagnosis of Lyme disease and immediate treatment without further testing.”This means that if you do have a bulls-eye rash, you should go to a doctor as soon as possible to begin antibiotic therapy for Lyme disease. Take pictures and keep a journal of any other signs and symptoms you may notice."


lymeontario.com/about/about-lyme-disease-2/
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 4/9/2018 5:26:38 PM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 4/9/2018 3:57 PM (GMT -6)   
Rockergirl,

Considering your history and also your viewpoint on the matter, I would suggest doing the full panel of tests with DNA connexions instead of just a Western blot with Igenex.

DNA Connexions uses PCR analysis to find pathogenic DNA of various tick born infections and is not dependent on antibodies produced by the immune system. If you get a positive test for borrelia (Lyme), it means they found borrelia DNA in your lab sample and there is no question about it - yes you did have Lyme and it's still there and is most likely the cause of your muscle pain (and UC??).

The full test will also include some of the coinfection species. Lyme disease (borrelia) is rarely the only infection transmitted by a tick. There are usually multiple infections transmitted, and those infections can all cause different or overlapping symptoms. If your treatment in 2011 really did eradicate the borrelia, but say, bartonella, was also transmitted and was not eradicated by your treatment, it is possible that you may have a positive test result for bartonella.

Just be aware that a negative test of any kind doesn't prove there's no infection. It only means no DNA of the species they test for was found in your sample.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 282
   Posted 4/9/2018 5:22 PM (GMT -6)   
I'm sorry you're feeling swamped with lyme-positive responses - that's not a good feeling I know. I think many of us were misdiagnosed and have suffered the complications of chronic lyme. We tend to be very concerned as a result, but if you give the forum a chance there's a lot of useful information here as well.

I know that in my area the response of doctors to the risk of tick borne illnesses has changed over the few years that I've been alert to this. I suspect I might not have been misdiagnosed if I'd shown up this year rather than four and a half years ago.

Personally I would try to get a more specific test for lyme - Igenex or what WalkingByFaith suggests above. I would also get a test for co-infections and specifically bartonella if you can as this can also cause muscle pain and the treatment you received for lyme might not have touched these. Lastly I would recommend reading Stephen Buhner's book on Healing Lyme. It offers the most detailed scientific description I've read of Lyme and what it does in the body. This book is what convinced me to test and also to try herbal treatment. Even though I had a bulls eye rash I was still skeptical. I approached my initial treatment with curiosity - Buhner lays out a core protocol along with augments that are symptom specific. If I could work on the core protocol and those specific areas that troubled me the most and see improvement then I knew this would be the right way to move forward. And I did. I wouldn't want to rule out lyme or co-infections prematurely as they are treatable.

Testing, experimenting with treatment, and gaining a better understanding of what the different bacteria do in the body so that I could make some sense of the various symptoms I experienced was the way forward for me. Whether it is lyme or fibro I hope you find your way forward Rockergirl as neither diagnosis is easy.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 4/9/2018 6:33 PM (GMT -6)   
"My gut is telling me that I don't have Lyme and that the Fibromyalgia dx is the correct dx. Especially since I am treating it with meds that are prescribed for it and they are helping."

In a nut shell consider this: Fibro is a set of symptom from unknown causes. Fibro meds don't fix anything, its just a cover up. Its an easy way for the medical industry to stop looking for a cause and cover symptoms with drugs.

A big time mid-west hunter friend of mine came down with "fibro" last year. He knows my story, but he has to many "commitments" to figure it out.

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/10/2018 8:58 AM (GMT -6)   
Girlie - "But, it's not my opinion. I'm not diagnosing you. The EM rash says it all.... An EM rash is a sign of lyme disease. From the ILADS treatment guidelines:"

Girle, you are diagnosing me because you are telling me that my rash was EM. I had an EM TYPE rash.
I am posting the below references because I think it is not wise to tell people coming here for support that you know what the rash is. Someone else looking here for answers could present similar to me clinically. No symptoms other than a lesion. In the middle of January when I don't go outside, let alone ever in the woods. The below information was what I was diagnosed with via pathology reports. I have an auto-immune disorder, presented lesion on thigh, in mid forties, on quite a bit of medication to treat auto-immune disorder, etc. Clinically my dx at the time of Atypical Annulare was more in line than a Lyme dx. Since my Western Blot came back negative and my pathology came back positive for something else this is what I have to go by until something else proves otherwise. I understand you want to be supportive and don't want to see people undertreated, but I think you need to be open to other stuff as well.



Reference https://www.dermnetnz.org/topics/granulomatous-dermatitis/

"Atypical granuloma annulare

Atypical granuloma annulare describes:
...Unusually severe or symptomatic granuloma annulare...

Interstitial granulomatous dermatitis...

Interstitial granulomatous dermatitis is a pathological finding noted in some patients with extensive granuloma annulare or other disorders with similar clinical presentation...

Clinical features of interstitial granulomatous dermatitis...

The features of interstitial granulomatous dermatitis are variable.
Red or skin-coloured patches, papules and/or plaques
The shape of the lesions may be round, annular or cord-like.
Lesions wax and wane, and may vary in size and shape over a period of days to months.
They are usually symptomless, but some patients complain of mild itch or burning sensation.
The lesions tend to be symmetrically distributed on the trunk but proximal limbs may also be affected.
It most commonly affects middle-aged women.
Many affected patients also suffer from other autoimmune diseases.
How is interstitial granulomatous dermatitis diagnosed?...

Interstitial granulomatous dermatitis is diagnosed by a pathologist on examining a skin biopsy (dermatopathology). The characteristic histological features of interstitial granulomatous dermatitis are:
Dense histiocytic inflammation in the reticular (lower) dermis
Fewer numbers of neutrophils and eosinophils.
There may be a perivascular and interstitial lymphocytes.
Histiocytes are mostly interstitial (between collagen bundles) or palisaded around collagen (lined up perpendicular to the central fragmented collagen).
Focal degeneration of collagen may be surrounded by empty space (floating sign)
Giant cells are uncommon...

...Autoimmune diseases and conditions...

Both forms of granulomatous dermatitis have often arisen in people with other conditions considered autoimmune in origin, implying an immune-complex mechanism may be involved in the pathogenesis..."

Reference https://www.healthline.com/health/erythema-annulare-centrifugum

"Erythema annulare centrifugum (EAC)...As the rash spreads outward, it may take on the appearance of rings, like a bull’s-eye...EAC usually shows up on the thighs or legs...

Reference https://www.dermnetnz.org/topics/erythema-annulare-centrifugum/

"Erythema annulare centrifugum may occur at any time throughout life, from infancy to old age. The eruption usually begins as small raised pink-red spot that slowly enlarges and forms a ring shape while the central area flattens and clears...

The diagnosis of erythema annulare centrifugum is made clinically, and confirmed by histopathology showing perivascular lymphocytic infiltration...

Differential diagnosis includes:
Erythema migrans (Lyme disease)
Target lesions in erythema multiforme
Annular plaques with central blisters in fixed drug eruption, bullous pemphigoid
Serpiginous plaques in cutaneous larva migrans
Annular dermal plaques in granuloma annulare, one form of lichen planus
Annular scaly plaques in discoid eczema, chronic plaque psoriasis, seborrhoeic dermatitis, pityriasis rosea, discoid lupus, porokeratosis, tinea (dermatophyte infections)
Annular smooth, urticated lesions in urticaria, Sweet syndrome, polymorphous light eruption, subacute cutaneous lupus erythematosus or systemic lupus erythematosus...

What causes erythema annulare centrifugum?...

Bacterial, fungal and viral infections such as tuberculosis, sinusitis, candidiasis or tinea
Drugs including chloroquine and hydroxychloroquine, oestrogen, penicillin and amitriptyline
Cancer (especially the type known as erythema gyratum perstans, in which there are concentric and whirling rings)
Food, most often blue cheese or tomatoes
Recurrent or chronic appendicitis
Cholestatic liver disease (blocked bile system)
Graves disease (overactive thyroid gland)"
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/10/2018 9:10 AM (GMT -6)   
WalkingByFaith and SandyFeet - Thank you both for your responses as I feel they were both supportive and also giving me options to do some more specific testing for peace of mind purposes. Just knowing how I am, I may get more extensive testing to put this to bed. I get that this is also sometimes a disease dx'd via clinical symptoms (like Fibromyalgia) and there could be false negatives on the testing.

I'm not certain if people understood what I was asking when I came on here. I really just wanted to know if getting tested again for Lyme was going to help me in any way rule it out definitively. It sounds like that answer is no. If it comes back negative again, there could still be false negatives, although I think it would be enough for me at this point. If it came back positive, it could be antibodies sitting in my system from possibly originally having it 7 years ago, but because I was treated for it anyway as a precaution, that doesn't mean it is even active at all in my system in a latent form. It's like having Epstein Barr antibodies sitting there from having mono. Doesn't mean I currently have Epstein Barr. I had no Lyme related symptoms post treatment for the past 7 years to make me suspect that I have latent Lyme. The Fibromyalgia stuff just started happening several months ago.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 4/10/2018 10:20 AM (GMT -6)   
As far as antibodies - yes. That's why I suggested the PCR analyses from DNA Connexions - full panel for Lyme and coinfections. If you do get any positives from that, you can take it to the bank.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 282
   Posted 4/10/2018 10:53 AM (GMT -6)   
Yeah, I think it is a lot like EBV in a way, which is why I think it's so hard to know whether you're cured / in remission or whatever. Sigh.

I was also going to suggest that, depending on your doctor and availability of testing, you might also consider getting CD57 and CD4 blood count tests. The former tends to be low in chronic lyme and the latter in Bartonella. I haven't had either done yet myself but they're on my wish list as they might offer clues. Like all the other tests they're not consistent or reliable indicators but if they're off they tell you something is up.

One of my relatives has had fibromyalgia for a long time. She's recently had a lot of success getting off most of her medications through lifestyle changes, using supplements and alternative therapies so there's a lot of hope for fibromyalgia too. Keep looking for answers and exploring possibilities. Chronic illness really sucks but the one upside for me is that I feel a lot more in control of my own health now. It's a nice feeling.

We tend to stick in our own little health silos here - it would probably be really lovely if we could sometimes share the things we've all learned from chronic illness regardless the cause.

Best wishes rockergirl.

Post Edited (sandyfeet) : 4/10/2018 10:59:06 AM (GMT-6)


RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/10/2018 11:39 AM (GMT -6)   
Thanks again Sandyfeet for all your well wishes. Yes, it's quite frustrating that if the test does come back positive for antibodies to not know if it's a current or old infection. I will keep in mind those other markers for bloodwork too. It really gets overwhelming at times to deal with all these different chronic health issues. I know part of it is my personality. I trust my doctors because I make sure I research and connect with good ones, but I still am so active in my role of treating myself. I jump in with both feet and am very proactive in learning and doing all I can to help myself. It gets exhausting. But yes, we have a lot more control that way. We should all validate each other no matter what chronic illness we are suffering from.

Fibromyalgia is a real thing and thank you for acknowledging that. I guess some people can't understand unless they have experienced it for themselves. I am on 1 pharmaceutical for that and a whole bunch of supplements and alternative therapies. It is all helping immensely.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 282
   Posted 4/10/2018 12:56 PM (GMT -6)   
Oh absolutely it's real. We do tend to believe here that many illnesses are likely caused by lyme, but then when my family was dealing with gluten sensitivity I was convinced that my relative with fibromyalgia was celiac or gluten sensitive too. That didn't go down too well lol

All illnesses are complicated but it's so easy to lose sight of that complexity when we want to help.

I'm so glad to hear the treatments are helping. I know it can be _really_ debilitating. I honestly had no idea, even with friends and one relative suffering from it, until I got sick myself. I don't think anyone ever does.

Post Edited (sandyfeet) : 4/10/2018 1:15:16 PM (GMT-6)


RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 4/10/2018 1:47 PM (GMT -6)   
Astroman - "In a nut shell consider this: Fibro is a set of symptom from unknown causes. Fibro meds don't fix anything, its just a cover up. Its an easy way for the medical industry to stop looking for a cause and cover symptoms with drugs."

Astroman, the above statement you made is absurd IMO and not at all a useful response to my questions. There are SO many diseases with unknown causes. I suppose you suggest we treat none of them. Especially the ones with the high mortality rate. Let's all opt to die instead or suffer immeasurable pain. Sounds like you have a lot of Fibro hate happening there.

To each their own, but until they find the causes to cure these things, I opt for treatment if it improves my quality of life. One must work with what is available.
-2005 dx UC proctitis, 2006 UC pancolitis, some pathology reports have suggested Crohn's Colitis
-2018 dx Fibromyalgia
-Current Meds (UC): Colazal, Canasa, Bentyl & Omeprazole
-Current Meds (Fibro): Cymbalta
-Past Meds (UC): Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro
-Supplements: Probiotics, Cal+D3+K2, Magnesium Malate, Tumeric, COQ10

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 299
   Posted 4/10/2018 8:58 PM (GMT -6)   
RockerGirl said...
No symptoms other than a lesion. In the middle of January when I don't go outside, let alone ever in the woods.


Ticks are active in the winter, and actually much more prevalent in the city than in the woods these days.

I was diagnosed with "classic fibromyalgia" in 2015. My first 2 lyme tests came back negative. I never had a rash, and I do not ever recall having a tick bite. My most recent WB came back only slightly positive, not even close to CDC positive. I have lyme, and my daughter has congenital lyme.

I am not saying you do for sure, but you sure have the risk factors. Lyme and fibro are not as cut and dry as you seem to be hoping they are.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 4/10/2018 10:04 PM (GMT -6)   
RockerGirl said...
Astroman - "In a nut shell consider this: Fibro is a set of symptom from unknown causes. Fibro meds don't fix anything, its just a cover up. Its an easy way for the medical industry to stop looking for a cause and cover symptoms with drugs."

Astroman, the above statement you made is absurd IMO and not at all a useful response to my questions. There are SO many diseases with unknown causes. I suppose you suggest we treat none of them. Especially the ones with the high mortality rate. Let's all opt to die instead or suffer immeasurable pain. Sounds like you have a lot of Fibro hate happening there.

To each their own, but until they find the causes to cure these things, I opt for treatment if it improves my quality of life. One must work with what is available.


I think Astroman was just trying to say that Fibro has no cure...or a treatment to resolve it...other than managing the symptoms.
ie pain killer.
Where Lyme disease - there are treatment options...although it can be long and drawn out (sometimes years).
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sebreg
Veteran Member


Date Joined Jun 2015
Total Posts : 807
   Posted 4/11/2018 10:00 AM (GMT -6)   
I would always keep searching for root cause that is driving symptoms for things like CFS, fibro, MS, etc. Given your EM rash history I think it's worth really closely examining and ruling out tick borne infections as the driver of your current constellation of symptoms. The amount of times I've heard of talked to someone who got initial treatment but then years later presented with CFS, fibro, MS is actually quite astounding (I know it's only anecdotal but still). Imo it's not possible to fully eradicate the pathogen once it has established itself in the human host (but you can get remission with proper therapeutics, diet, etc and get it under control), so the possibility of recrudescence later on is not surprising to me.

I need to rewatch this video but Dr Phillips and Dana offer very solid info in their video series, this one is on fibro: /www.facebook.com/lymebook/videos/719147978290584/

I think getting another WB is not a bad idea. You might consider trying to do an antimicrobial challenge, sometimes this can help draw out the lyme so that it is more likely to come up on the test if it is there. Also, another idea, is trying various antimicrobials, if your symptoms get worse and you feel worse it is another strong indicator of underlying infections. As I see it trialing various broad-spectrum antimicrobials to gauge for herx is a nice indirect way of getting some confirmation either way.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 4/14/2018 10:45 PM (GMT -6)   
Girlie said...
RockerGirl said...
Astroman - "In a nut shell consider this: Fibro is a set of symptom from unknown causes. Fibro meds don't fix anything, its just a cover up. Its an easy way for the medical industry to stop looking for a cause and cover symptoms with drugs."

Astroman, the above statement you made is absurd IMO and not at all a useful response to my questions. There are SO many diseases with unknown causes. I suppose you suggest we treat none of them. Especially the ones with the high mortality rate. Let's all opt to die instead or suffer immeasurable pain. Sounds like you have a lot of Fibro hate happening there.

To each their own, but until they find the causes to cure these things, I opt for treatment if it improves my quality of life. One must work with what is available.


I think Astroman was just trying to say that Fibro has no cure...or a treatment to resolve it...other than managing the symptoms.
ie pain killer.
Where Lyme disease - there are treatment options...although it can be long and drawn out (sometimes years).


Girlie understood.

RockerGirl - I have no hate toward "fibro" nor your over-emotional response. I was also diagnosed with fibro years ago. It is a set of symptoms, which one might possibly find the cause vs covering them up with pain meds. Saying it "like it is" is not hate. Some people on H.Well's fibro forum do look for causes, which is a good plan, and no, its not always lyme either.

My friend is not doing so well on his fibro meds, is fed up and wants something better but does not have the time, energy, or money to investigate. I dont push lyme on him, but he knows my story and other peoples too (which is not just lyme by the way). I could also be on Rx pain meds, but its my choice to avoid them, i've had years of imminence crippling pain in the past. Its way better, but not gone. I have learned a lot of muscle pain self-release techniques too vs paying for it several times a week.

All I'm saying is many fibro people could do themselves some good by opening their minds beyond what the typical fibro Dr says / does. You are here so obviously you've thought about it. smile

Post Edited (astroman) : 4/14/2018 10:49:37 PM (GMT-6)


Dollface29
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 4/15/2018 6:51 AM (GMT -6)   
Hi RockerGirl,

I hope you find the correct path based on the correct diagnosis, whether that be fibro or lyme, and I wish you the very best luck. I know just how maddening and confusing it can be, to be assured in the correct diagnosis and the correct treatment.I can only share my personal experience and story with my diagnosis, and what has helped me in finding the truth. I do believe that aggressively/ extensively testing for Lyme, however tiresome and confusing, may ultimately prove life-changing and beneficial to your full recovery. Galaxy Diagnostics is currently, in my experience, the most sensitive and sophisticated lab for these kinds of tests. Note: I do NOT have Lyme disease myself, but my story may be useful to you.

In 2016, when I was first bitten by my cat, who died a few days later, I never thought much of it, I grieved my kitty. I had no mark, no rash, nothing. I went to an Infectious Disease specialist at the time of the cat bite because Dior (my cat) was very sick. He told me I looked healthy, so no need for prophylactics. A week later, my cat died from her illness.

3 months later, I was dying with two severe infections - one was Scrub Typhus, the other was Bartonella or more commonly known as Cat Scratch Disease. I was put in the ICU on account of my oxygen level being down to 40, and because of the history of cat bite and death, tested for Rickettsial infections which is what the cat died of. I was positive for Scrub Typhus and treated, and survived. I had been completely healthy prior to this illness. I was put on 14 days of antibiotics for Scrub Typhus, but after treatment stopped, I continued to suffer body aches, muscle pains, strange symptoms. 5 days after ending treatment, I was in such agony I went back to the same Infectious Disease doctor.

He dismissed all my symptoms as "aches and pains", tested my vitamin D levels, and diagnosed me then and there with Fibromyalgia. He insisted I had all the tender points. He insisted fibromyalgia was all I had, and refused to even consider the possibility of anything else. I asked if it could be any other infectious disease, and he told me no, and even if there were, I had already been treated with antibiotics (Doxycycline, for 14 days.) I got myself tested for many, many other diseases - auto-immune test, deficiencies, intestine problems. My symptoms were everywhere - sometimes my gut, sometimes my muscles, sometimes fatigue, often insomnia, sometimes fever, sometimes bone-crushing tiredness and headaches. I finally thought - maybe it's true - I do have fibromyalgia. Everywhere I read on the net it seemed like fibromyalgia. It was a very confusing, bleak time in my life.

I wrote to a Scrub Typhus specialist in Thailand whom I thought could help me because I still believed I was suffering from Scrub Typhus. He quickly assured me that 14 days of Doxycycline was enough treatment, and that it wasn't Typhus. BUT --- he saved my life by telling me - hasn't your doctor considered Bartonella? Considering your cat was sick and died - it could easily have transmitted Cat Scratch Disease to you. I got tested for Bartonella in India, and it came back negative. I would go through periods of denial, thinking I was fine but only imagining it, or go through feeling sure I had fibro, I mostly wanted the endless speculation to end and just get on with my life with some sort of treatment that worked.

My mother insisted that I likely had Bartonella. I got mad at her. I was trying to tell myself if I just went on living, slowly I would return to normal like I was months ago. But she was adamant. I suffered agonisingly for 6 months. Finally, I travelled to the US to get tested for Bartonella at one of the best labs for it at Galaxy Diagnostics. The doctor there - an expert in Bartonella - INSISTED I would need Bart treatment regardless of whether it came back positive or not. I thought he was a freak to say that. I still thought it was wildly unlikely I had Bart. I thought he was being fanatical about his insistence I had Bartonella based on my symptoms.

It came back positive. Even my blood serum, showed the antibodies. Beyond any question of a doubt, I had Bartonella. I've had around a year of treatment and am finally better and not dysfunctional the way I was then. I have some months left of treatment till I am permanently cured. I was tested extensively and only have Bartonella, no lyme or other co-infection. Tick borne illnesses take time and patience to get rid of, but they can go. And they can really mimic a HOST of plausible seeming diseases. And not everyone knows enough about them.

My biggest regret is that I delayed my Bart treatment until I tested positive, because I really didn't believe I had it. I don't want to convince you of something you may not have. I can only share my journey, and how I was gaslighted and often felt crazy until I tested positive for Bartonella.

Post Edited (Dollface29) : 4/15/2018 7:04:27 AM (GMT-6)


astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 4/15/2018 9:43 AM (GMT -6)   
Dollface29 - very moving true example, great post.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.
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