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Info & Whats up with me?... Info & Whats up with me?...

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Unread 03-31-2004, 07:52 PM
Info & Whats up with me?...

I'm almost afraid to let the words pass my lips - but who else would I share it with? The smartest ladies on the web..that's who!

Alright for those of you who don't know's some info you can all use - check out the Feb version of O magazine re: infertility drugs and auto immune diseseases (endo people would be interested in this - Lupron is covered)

Now for me:
You all know life has pretty much been absolutely no fun for me for a while. To say the least! :flame:

Well, I feel some compassion for our Canadian neighbors because since the implementation of TennCare in the state of TN you get about 2 seconds with each doctor including specializing physicians no matter your insurance affiliation. I'm not knocking TN care! I've been without insurance and I know how bad that is...I'm just saying that it's having an impact for 'problem cases' like mine.

Well, I took the bull by the horns after my TN doctor told me that a more active social life might make me feel better - this is after I went in crying with a pain level of 10 (stating plainly that death wouldn't be all that bad right about then but hoping it would pass) - and all I got was a lecture about how 'we make our own happiness'. Well the lecture was not in vain. I took what little savings I had for 'emergencies' and went to Georgia. Atlanta to be specific.

I took my two duffle bags of lab tests, mri's, etc and another bag of 'doctor notes'. The woman was a gift from heaven. She spent almost 3 hours with me and went over every test. She even gave me meds in the office to assist in my drive home (non narcotic I might add). She did an exam, and ordered more testing. And.. several probably diagnosis and some certain diagnosis. I hope and pray I have a name to put with this terror....this sham of a life I'm living. I don't WANT a disease...but as I told her, "Whatever I have is getting worse, and at the rate it's getting worse I cannot imagine it not killing me'. She listened to me...she really listened to me. For once, she did most of the talking, but in a dialogue with me. She said, 'So your going blind right?" I said, yes, and explained that it sometimes lasted for hours sometimes minutes. She said, "Do you have alot of joint pain or bone pain" I explained I had both. She said, 'Do you have mouth ulcers?' this went on for quite sometime. The physical exam didn't take long but she had specific things of note to discuss with me. In 3 years of seeing every doctor in TN - I have not had a complete physical exam!

To sum it up - I've been told I had MS/ then ALS then 'I don't know...we may not know until the autopsy' - seriously...this was said to me.

The doc said, I think you have lupus that was triggered by a couple of things - the 1st being the Lyme disease you contracted in 1998 during the pregnancy of your 1st child. WHAT!??? Nobody mentioned that! The second might have been your hysterectomy - but that's beside the point. You have 4 possibly 5 conditions going on here.

Late stage Lyme disease
PolyMyalgia Rheumatica
Psoriatic Arthritis

Well, finally! Someone believes I have BONE pain just like I've claimed for a long, long time! The docs in TN gave it no merit at all even when 8, yes 8 of my teeth fell out in pieces. Not all at pieces!

I thought I was going crazy when I started having blurred thinking - like Neo in 'The Matrix' when his reality melts away this is exactly what it feels like....and it's utterly terrifying.

I have alot of trouble typing, breathing actually hurts - ALOT!... just getting up is a real challenge. During the exam - I had trouble just raising my arms & legs. All of this happened to me in less than 3 years. I'm 37 years old.

I go back in April to start something called 'Enbrel' a new biologic drug to ease inflammation and stop the auto immune inflammatory process. I will also dicsuss with her then long term anti biotic treatment for Lyme disease.

I have nodules under the skin and hyper pigmentation - just like the pictures on any site re: scleroderma. According to her, it doesn't have to be 'extreme' just present to be of concern.

She ordered more tests - my doctor's office when they came in acted as if there were a sudden epiphany when the results came - then I politely pointed out that I had to go to GA to get those tests ordered in the first place.

Again - I don't want any of these diseases, but it's my common horse sense that says you cant fight what you cant name!!!

Another wierdo thing - my white count is like a bouncing ball and seems to have an inverse relationship with my rbc. Up/Down never 'normal'. Along with my blood pressure. I've NEVER had blood pressure problems until this year. Now it's 60/40 and then right up to 140/90.

Dont pray for me to be aint gonna happen. But pray for me to find answers. Then maybe I can get well. All prayers appreciated.

I may go back and she may say, "Eh, I dunno"...but at least she's willing to try something. SOMETHING.

Wonder women of the any of you know if scleroderma REQUIRES a positive SLE-70 test? I had a 'detectable' result, but it's not high, nor is it low. I'm sorry, but I'm anxious and not in any position to do 'research'.
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Unread 03-31-2004, 08:23 PM
Info & Whats up with me?...

Angie, I am so glad that you are finally getting some answers
after all these years of being on the road less traveled.
I would bet that our professionals here will pop in with
their help and direction. What I can do is pray that your doctor
continue to receive wisdom and offer you the best possible
treatment. There must be some relief for you to finally
have names and reasons for your symptoms. Congratulations
to you for refusing to give up the good fight. You really are
an inspiration to me, Angie!!!!!
Unread 03-31-2004, 10:35 PM
Info & Whats up with me?...


So sorry to hear you had to go all the way to Georgia to get a diagnosis, only to get several of them!

They say misery loves company... I have to say, our diagnoses have been completely different but we've both experienced the same phenomenon over the past several years: a major failure of our immune systems that has implications in many areas of our bodies. In my case, I can trace the origins to the beginning of perimenopause (slightly pre hyst). How about yours? (And, by the way, I have the wacko blood pressure, too, although mine seems to be associated with estrogen levels.)

Did this miracle worker in Georgia give you any indication of what type of treatment might help? I'm at the point of being told to manage my symptoms the best I can to remain comfortable, and wait and see if any of the little biotech companies come up with a wonder drug we can take to restore our immune systems to their former strength. Meanwhile, keep my fingers crossed no more disasters strike It's a very tiring proposition, and one I'm sure you understand well.

Hang in there, you have come so far already, I hope the answers are within your grasp.
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Unread 04-01-2004, 12:02 AM
Oh, boy, I sure get the auto-immune "thing"!!

<-----pending confirmation of Sjogren's syndrome. Also fighting off HPV and cervical neoplasm.

Sounds like you're finally getting some confirmation of what your body has been telling you for years. How frustrating for you to have to travel so far for these answers! Is this new lady a rheumatologist? I'm beginning to think I should just use my rheumatologist as my PCP -- they're the only ones who seem to understand the integration of all these symptoms!

There is Lyme disease in northern California but I've definitely heard the "conventional wisdom" about infection and that it presents in a uniform way . Most will tell you that there isn't Lyme here -- and then tell you that you really shouldn't go bare-legged hiking in even the hottest of weather. We try to be careful around here, even though I'm not sure it's all that common in urban Los Angeles.

Remember (((Lily))), our friend from Oz? Your symptoms sound more and more like hers, especially in this last post. If you still have her e-mail, it might be worth writing to her and seeing if she's finally found a treatment that works for her. She, too, was dealing with all the neurological stuff, and having trouble with a "firm" diagnosis.

Labs in auto-immune disease can be incredibly deceptive. I know that with Sjogren's, up to 30% of us can be SSA or B negative -- something that I had to point out to my pulmonologist, who blew me off. I've actually failed to follow up on a lot of this stuff, simply because I'm able to function and because there's little they can do for Sjogren's that I'm not already doing.

I sure hope treating the Lyme goes a long way to improving the quality of your life. Is there anyone in Tennessee that this doctor in Atlanta might have trained with that she could recommend follow-up with? Your TNCare sounds like our MediCal -- and it only covers a small percentage of our population here.

Angie, I've been thinking of you recently; I'm not around much any more myself, so I often miss things. But just getting some answers, and some validation, has to replenish that empty reservoir of hope for a while longer!

Big s, sister....

Unread 04-01-2004, 04:19 AM
Great big hugs to both of you! And all who've been patient with me here...

Funny thing about Lyme - here in TN there's a published MD at Vandy who says Lyme doesn't live here. But during his publication release the Army base did a collection of deer ticks and the findings were astounding. A high percentage were infected with Lyme and they concluded that it was a serious threat to soldiers here in TN. During this time, a friend of mine contracted Lyme but was told at Vandy that he couldn't possibly have it because the ticks don't live here. He moved to GA with wife & 6 kids, and almost died. He found this lady and she knew immediately what was wrong. She helped him. I hope she can help me. And as God would have friend called on a day when I was in complete dispair, and suggested I see her.

I started having problems a long time ago - mine began with adolescence - endo specifically, but there were other things like breakig out in huge whelts when I was in the sun, asthma, IBS, and all sorts of other things. But I managed to deal with it...until my hysterectomy - 1 year after I contracted Lyme. AFter that I was never the same.

Surferbabe - what is your dx? symptoms?

Anti inflmmatory drugs have come a long way - they're referred to as biologicals - like enbrel (see link below)

Anyone hear from Lily lately? Please direct her here if you have her email - I'm not sure I still have it. I've thought of her twin across the sea.

Great big hugs to both of you! And all who've been patient with me here...
So many in my family, groups of friends, and coworkers...and even employers have become incredibly frustrated with me. I can always count on your ladies to prop me up when I'm about to slump over in a heap.

I can't imagine going on and not knowing what's wrong! How can you fight what you cannot point out?!

The point is...I appreciate you all. When I need answers you all try to help. When I need comfort someone has a kind word. When I need understanding - well seems here is the only place I can find it.

I stopped posting because I've been so busy, and ill, and well...frustrated. Now, I have a name. I hope to know when I go back exactly what I do have. Scleroderma scares me the most, but if that's what it is...well lets treat it and be done with it.

The kind doctor told me that all of those diseases except lyme were like biological loaded guns...all they need is a trigger. I had endo which predisposes you to all sorts of nasty things. All I needed was the lyme to set it all in motion...and the surgery didn't help at all! Hrt nightmares, and illness, and biological loaded guns...good grief! How DID I survive? With God's help and good friends...that's how.

Yes, she does have a 'treatment' in mind. They have new biologicals out to treat these diseases - it eases the pain without narcotics (YES!) and blocks the inflammatory process. check out it has loads of information and a neat little diagram to show how it works.

She sent me home with a video and said, 'You'll have to inject yourself with this, do you mind needles?' I laughed. I said, "Lady if you want to stick a needle in my eye that'd be fine if it will help".

She is a rhuemetologist but more than that she works with the CDC. There's about to be a big push of information reguarding Lyme in the near future. Shes the first doctor I've seen that was actually ticked off (pun intended) that no one had found this in 3 years and it was clearly marked in my chart...all the signs were there just no one took the time to interpret it. Unfortunately Lyme can cause permanent damage if it's not treated. She suggests 18 months of antibiotics. We're supposed to talk about it when I go back.

All the connective tissue diseases are rampant in my fathers side of the family. I didn't know this until after she asked me to do a bit of research...I actually have 2 first cousins who are MALE who have Lupus! I have another 2 female 1st cousins who have it and 2 aunts - and looking back, my father had some really nasty symptoms!

Of course she doesn't dispute the fact that I might have fibo on top of this, but she doesn't think that's the major thing going on here. The RSD is still certainly a possibility, but it's not causing the bone pain....and certainly not causing my teeth to fall out!!!

Unread 04-01-2004, 11:57 AM
Info & Whats up with me?...

Dear Angie,
I'm so sorry for all you have had to endure! I'm also glad for you that finally you have a doctor who listens and takes you seriously and has made some sense out of your suffering--labeling what you have helps so much--as you say, you can't fight something that you can't name.

My prayers are with you. Keep us posted on how you are doing.

TAH/BSO for endometrial & endocervical cancer/ruptured bladder Dec/02; hypothyroid
Unread 04-01-2004, 03:06 PM
Info & Whats up with me?...

Angie, Lily popped in on the Road and gave a detailed update
on her medical tests and diagnosis. You can find it on a search
with her name. The post was on the Road titled
Hello; update on me and Merry Christmas dated 12/25/03.
It looks like both of you are finally getting some answers!!
Unread 04-01-2004, 05:53 PM
Info & Whats up with me?...

(((Angie))) as I said, my situation is, on the face of it, nothing like yours, but I think the underlying cause is the same... a total breakdown of the immune system

Mine started 3 years ago with rampant overgrowth of my adenoids and constant infections (had an adenoidectomy for that); then the hyst for prolapse which was shortly followed by diverticulitis and a perforated colon & peritonitis (had a colectomy for that); and more recently a breast cancer diagnosis (had a lumpectomy for that).

I've gone from being healthy as a horse all my life, never ever missing a day of school or work, to feeling like a 90 year old invalid, in the space of three years. I truly believe it was all precipitated by the hormonal changes which started during perimenopause, before my hyst. Supporting that contention, every time I try to decrease my HRT, my body starts to fall apart.

I am lucky, I have a couple of DRs who actually believe me and are trying to help me return to health; but have also had to deal with some who are very quick to pooh-pooh my theory but not so quick to offer viable alternative explanations other than bad genes (which I don't have; my family history is amazingly unremarkable).

I'm so sorry you've had to endure so much and truly hope this latest treatment is the answer you've been looking for.
Unread 04-01-2004, 06:25 PM
Info & Whats up with me?...

Hi ((Angie))

It's good to see you again... and hopefully this time with some answers.

Something is going on with my immune system too... For the last two months (that I know of) my WBC has been abnormally low (2.8, then 3.3, then 3.1 when the normal is 4.0-11). In addition my platelets have been low or borderline each time. My RBC are fine ... I have to have another blood test and if that one is still low the GP is sending me to a Hematologist. The GP has no idea what is going on.

Another interesting part of my medical history is that while I was on Lupron (for endometriosis) I developed symptoms of an autoimmune problem. I had terrible muscle and joint pain and a moderately elevated ANA titer (1:160)... it went away after I stopped the drug but it has always made me wonder what might be lurking when I go into menopause.

This last surgery (2/4/04) I had endosalpingiosis turn up (quite a bit on my left side)... that was a first but it made me think that my body just doesn't know how to clean-up my pelvis...

ANyway, thanks for sharing your story. I hope things continue on a positive track.

Unread 04-01-2004, 08:12 PM
Info & Whats up with me?...

Oh (((((Angie)))) It's so good to see you again I miss you, sister.

I'm sorry that you're still having such a hard time... I really wish that I could pray for you to get well... but praying for an answer sounds like a good alternative: as you say, that is probably the first step towards getting well.

I can't believe that the signs and symptoms were all there, all noted, all along, since 1998 and no one saw what they stood for Makes you wonder... That scleroderma does sound scary... even finding what it is is a very daunting process!!! But if it can be treated effectively, it might turn out not such a bad thing after all

It's amazing what modern... and even not so modern... medicine and treatment can do to help you towards a healthier life style. Just this week-end, I was watching a show about a real life situation of a little boy having a really bad case of epilepsy... that simply could not be managed by standard medical treatments. In his case, thanks to his mother's perseverance, she found a treatment, implemented in the 1930's that brought him back to health. It was based on a very controversia, very strict, high fatl diet... but it worked!!!

Hang in there ((((Angie)))) As you say, you're only 37, and you're one wonderful, caring, strong woman... and you deserve and answer and all the ers going you way.

We love you. Please keep us posted.

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