Lyme confirmed.

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veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/6/2009 6:34 PM (GMT -7)   
I went to the lyme doc. It is lyme for me. Hello everyone.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/6/2009 7:39 PM (GMT -7)   
Well Yeah I didnt do a western blot yet. The Lyme Doctor did just diagnose me by my symptoms. U may think i'm jumping the gun. But he said I am text book. I also came in with a Lyme rash I developed while taking minocycline In April. Mino that the infectious disease doctor gave me in spite of a negative serrologic blood test. (which are never correct in chronic). The Lyme doctor whom i love said to me... " He knew you had lyme thats why he gave you that minocycline even though he said you dont". He said judge people by what they do not what they say. Hes cool. Ive had a swollen knee and index finger, facial paralysis, butterfly rash, loss of muscle mass, loss of memory which he witnessed although he told me that i am a very intelligent woman that i noticed things other people dont which helped him see all my symptoms, and the specific type of chest pain. The present rash helped though, and some other symptoms. So i knew it was lyme it just felt good to hear someone believe me and he said "This is Lyme Veronica, and I am going to treat you."

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/6/2009 11:09 PM (GMT -7)   
Veronica,

I'm not a doctor and I'm not trying to say you don't have Lyme but a butterfly rash usually signifies Lupus. You may have both though or maybe Lyme is mimicking Lupus. I don't know but it is a good idea, especially since you have the butterfly rash, to get tested for Lupus.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/10/2009 7:01 PM (GMT -7)   
I have been tested for lupus and I know it is elusive also and lyme can do anything. my other symptoms do not comply w lupus. And lyme can produce lupus like syndrome. I have done extensive research. And the doctors were the first to give me the information that lyme and lupus are the only two that cause butterfly rash. It is just much more prevelant in lupus. I did think it was lupus in the begining because of this. But I have been led to lyme instead. I dont identify with the lupus forum either when I read it. The lyme just fits. My lyme doc has clinically diagnosed me w lyme. And presently i developed a lyme rash while on mino.
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/11/2009 1:19 AM (GMT -7)   
I too had a butterfly rash and an elevated ANA (but no Lupus-specific antibodies). But I didn't have enough symptoms of Lupus to qualify for that diagnosis so the doctor told me I had an Undifferentiated Connective Tissue Disorder (UCTD), and then my PCP told me she thought the UCTD was "Lupus-Like" but was secondary to something else (she had no idea what it was secondary to, & neither did any of my other doctors at the time). When I tested positive for Lyme, that answered the question of what the UCTD was secondary to in my mind (and in the minds of the LLMD & LLND's I've seen since).

It is known that Lyme can cause an elevated ANA and a butterfly rash. It is also known that Lyme is primarily a clinical diagnosis because of the unreliability of the tests available. Some LLMD's prefer to see if there is a response to treatment first before running a confirmatory test because of this, and because sometimes a few weeks of antibiotics can actually cause the body to start generating antibodies to the Lyme and thus gives a more meaningful Lyme test result.

Just my $.02...take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/11/2009 5:27 AM (GMT -7)   
Veronica you are absolutely right about us knowing more than the doctors and you are so lucky (like me) who has a doc who will treat aggressively based on symptoms. I had two Western Blots - the first one negative, but I had 3 bands (sorry, can't remember and IMO it doesn't matter) - the second one showed 2 bands, the third, none. Anyway, she treated me with orals and I got another bite in October. Started feeling really horrible in January - since I have to pay $200 for each Western Blot (I have 80/20 plan), she decided to do a CD57. Normal values are 60-300 - mine was a 19. By the time I got the PICC line put in in February, CD 57 was a 16. I am on IV Rocephin (2g 1x a day). Coinfections came out negative but was not getting much improvement (a lot of herxing though) with Rocephin, so she added the doxy - 400 mg daily - 2 weeks ago. Then I really herxed and still am. Taking probiotics, and various other supplments to keep my immune system as healthy as possible.

Sorry for the ramble; having a really bad brain day, but just wanted you to know you're not alone and I believe you have Lyme and I wish you the very best.

Hugs,

Laura

PS - What meds is doc starting you with?

Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/11/2009 5:28 AM (GMT -7)   
Oh and sorry - I called you veronica instead of veromia - again - brain is bad today.....

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/11/2009 6:57 AM (GMT -7)   
Veromia, (I spelled your name wrong the first time too. Sorry about that)

I didn't mean to imply that you didn't have Lyme at all. I hope you didn't take me wrong. That's why I said that maybe Lyme was mimicking Lupus. I just wanted you to have all the information possible so that you could rule Lupus out. I see that you already had that done though. Good luck with everything and I'm sorry again. I didn't mean to come off in a negative way.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/11/2009 7:05 AM (GMT -7)   
Razzle,

I had an elevated ANA too when all of my symptoms started a few years ago. Since my liver enzymes were also elevated at the time, the doctor thought I might have a viral hepatitis. Boy was that scary to hear. They wanted to do a liver biopsy and something deep down told me not to do it....so, I didn't. My liver enzymes are finally back to normal after two years of being elevated. I'm guessing it was the Lyme and Hashimotos that was making the ANA elevated and maybe the co-infections making the liver enzymes elevated too? Not sure why they are normal now. I think the supplements and detoxing is helping.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/11/2009 8:27 AM (GMT -7)   
Thank you everyone, I do take it all as supportive information, after i get over my intitial sensitivity that has become a part of my brain. I wasnt so sensitive a few years ago. But i just love talking here. i love helping someone with something I have learned and so excited to see if someone responded to me. And you can call me veronica my daughters name is Era Mia . I mostly call her Mia. Veromia = Veronica+Mia! My western blot is in process. I am really interested in this Flow cytometry test though. I have taken mino which caused me to develope a lyme rash present when i went to my doc. i will begin 3 months on doxy after my western blot.
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.

Post Edited (veromia333) : 5/11/2009 9:36:52 AM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/12/2009 8:45 AM (GMT -7)   
Good luck with everything Veronica! Your daughters name is beautiful.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/12/2009 9:43 AM (GMT -7)   
Thank you so much!
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/12/2009 11:12 AM (GMT -7)   
To anyone,

What is ANA? I'm still trying to learn, plus I have a bunch of lab work that I don't understand and the Dr didn't bother going over w/ me! Maybe I wasn't tested for it, but just in case: would this show as ANA on my labs?
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