OK....time for serious questions

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/9/2010 3:15 PM (GMT -6)   
It's official. I have Lyme disease. Lyme ELISA positive, now Western Blot IgM and IgG both positive (by Igenex criteria....negative by CDC criteria of course!).

But I think I'm in big trouble, because in the past 18 months or so I've been dx with:

autoimmune hepatitis
fibromyalgia
rheumatoid arthritis
celiac disease
lupus (SLE)

BTW, lupus + RA = rhupus, which is comparatively rare.

For years I knew I had Hashimoto's thyroiditis, asthma, and psoriasis. My family has TONS of autoimmune diseases.

I'm on prednisone and have been since June 2008. Also Imuran and plaquenil. plus lots and lots of other meds (see signature).

Do I have to get completely off of pred, Imuran, plaquenil, etc, before I can be successfully treated for Lyme disease??

If so, what will prevent my immune system from killing my liver?? sad

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 1/9/2010 4:01 PM (GMT -6)   
It is likely the Lyme is what is causing these autoimmune conditions, and treating the Lyme will reduce the severity or eliminate altogether the symptoms of the autoimmune disorders. Don't stop any of your meds. A good LLMD will work within the framework of your specific case and customize treatment to meet your needs.

I too have a "lupus-like syndrome" diagnosis, non-Celiac gluten sensitivity (but I have one of the Celiac genes), "Crohn's" diagnosis (incorrectly diagnosed - I have felt this was a misdiagnosis ever since it was first given to me), Asthma, and many other issues. I believe most, if not all, of these things in my case are from Lyme/coinfections.

Good luck,
-Razzle
Chronic Lyme Disease, Chronic 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 trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 1/9/2010 4:57 PM (GMT -6)   
Hi JoAnn
 
Have you heard of LDN? I think are the perfect candidate for it. Maybe even before lyme treatment. You have multiple autoimmune disorders going on and so many people are achieving fantastic results with using it (Low Dose Naltroxene)
 
Not to say, you don't need lyme treatment, but I would look at the LDN too. And honestly, I would look at LDN first. Regardless of when and/or how you treat the lyme, you have to  treat the other issues. I think LDN may truly be something very worthwhile for you.
 
Here are some links I had posted on another forum :
 
I'm not sure why I can't remove the "stuff" below it, but I can't
 
PostPosted: Sun Dec 27, 2009 11:32 am    Post subject: LDN or low dose naltrexone Reply with quote

 

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=1871


http://www.lowdosenaltrexone.org/#How_can_I_obtain_LDN

 
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PostPosted: Sun Dec 27, 2009 11:32 am    Post subject: LDN or low dose naltrexone Reply with quote


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Post Edited (OneWearyChick) : 1/9/2010 4:01:35 PM (GMT-7)


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/9/2010 5:24 PM (GMT -6)   
Hi Razzle, thanks so much for sharing your experiences. I do have an appt with an LLMD this month; I'm sure he will take all of my issues into consideration. I just worry about it because my liver is already damaged (Stage II).

In my case, because of my family history (although I believe that the Lyme disease definitely has something to do with the incredible explosion of diagnoses I've had recently) I think that I do actually have all or most of these AI diseases. Lyme probably triggered some of them, but the reason that it was able to trigger them in me is that I'm genetically susceptible to AI disorders in the first place. Eliminating Lyme may eliminate some of my symptoms but I suspect I will still be left with a "confused" immune system that's trying to kill me.

I have aunts and daughters and nieces and grandkids and cousins with lupus and RA and Hashimoto's and celiac and Graves disease....and they definitely don't all have Lyme. Many of them live in other parts of the country and I've never even met them face-to-face. So I know there's some kind of genetic link there that exists even without Lyme to help things along.

OneWearyChick, I have heard of LDN but don't know much about it. I will check out your links....thanks.

Good luck to both of you....take care.
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/9/2010 4:41:06 PM (GMT-7)


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 1/10/2010 12:37 AM (GMT -6)   
nasalady,

My LLMD told me that he thinks I have an auto immune disease too. Are your liver enzymes elevated? They thought, at one time that I had auto immune hepatitis too. I do have Hashimoto's , so it just makes since that other things are going on. I agree with Razzle that it is probably Lyme throwing everything off.

I would not get off of any of your medications but you can ask your doctor about low dose hydrocortisone. It is supposed to be alot better on the body than prednisone. Just see what your doctor thinks. He/she may think you need to be on prednisone. I will be asking my doctor to put me on a low dose of hydrocortisone and see if it helps. Hopefully it helps my pain too.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/10/2010 2:36 AM (GMT -6)   
welcome home , nasalady,

how long you on the prednisone and how much. I'm lowering my dose now.

I was in same situation as you about 2 weeks ago. I was in shock after 30 yrs of
off the wall diagnosis.

hang in there. I am still learning and it is very confusing because so many doctors don't agree on treatment.
this forum has been a real eye opener and comfort for me.

bucci
hep c , lyme
Dad has lyme


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/10/2010 6:10 PM (GMT -6)   
Thanks Cajungirl and bucci; I really appreciate your replys. Cajungirl, I do hope that the hydrocortisone gives you some pain relief!

Bucci, I can relate....I'm in shock at the Lyme dx too!!

I've been on prednisone since 6/7/08....my hepatologist started me at 40 mg pred plus 100 mg Imuran per day. This was when I was first diagnosed with autoimmune hepatitis. My hepatologist has been very slowly dropping my pred dosage every three months. I was actually down to 5 mg per day, but then my liver enzymes started to rise slightly, plus my lupus and rheumatoid arthritis (RA) began to flare up. Between my hepatologist and my rheumatologist the pred dosage has been adjusted back up to 7 mg then to 10 mg per day, which is where I'm at now.

Cajungirl, yes, my liver enzymes were over 1400 (normal being <40) when I was diagnosed. I also tested positive for some of the autoantibodies that go along with autoimmune hepatitis (ANA, ASMA, etc), and I had a liver biopsy that revealed Stage II liver damage (Stage 0 is no damage, Stage IV is cirrhosis).

My response to Razzle may have seemed a bit defensive..... i certainly didn't mean to come across that way, but perhaps it's due to my impression that many people think that if you have Lyme, it explains ALL symptoms....you don't need to even think about any other diseases or disorders anymore. But I thought that Lyme can both mimic AI diseases AND trigger AI diseases....isn't that right? So it must be possible to have both AI diseases AND Lyme simultaneously.

I've been trying to come up with a possible timeline for when I may have contracted Lyme.....I don't remember a tick bite or a peculiar rash. I'm an astronomer so I've spent lots of time on mountain tops (because that's where they put big telescopes)....I've definitely wandered around in areas where there's a significant deer population (Mt Palomar in particular).

I know that I've had a few AI diseases for decades: specifically celiac disease, Hashimoto's, psoriasis. These definitely pre-date any Lyme infection that I have. Celiac disease is a bad one to have, because untreated celiac disease can "open the door" for other AI diseases to develop. I was untreated for 30+ years because I was told I had "IBS". If I had known that I just needed to stop eating gluten things might have been very different for me! My Hashimoto's almost certainly developed because of the untreated celiac.

In any case, between spring 2008 and now I've been dx with AIH, RA, fibromyalgia, and lupus. I'm having a lot of symptoms of MS as well. I was dx with celiac disease in Dec 2008, but I know I've had celiac for a LONG time.

I think that Lyme must have helped many of these disorders to develop.....or hopefully, maybe it's just mimicking some of them and after I've been treated some of my dxs will go away! :)

Since around summer 2007 I've gone from a relatively active, healthy person to a wheelchair-bound, pain-ridden person who's seriously thinking about quitting my job and going on disability. This is a terrible thing for me to contemplate because I have my dream job.....I love my job. I'm a scientist at a major research university; I actually support a NASA mission.

Anyway, this post is already WAY too long, but I wanted to put all of this out there because I think this is really a confusing, complicated situation. I know I'm confused! :(

I'll be seeing a LLMD on Saturday, 1/16, and I'm quite excited. This particular doctor is affiliated with Igenex labs, and has a very good reputation.

Good luck.....may 2010 be a year of healing for all of us!

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/10/2010 5:14:30 PM (GMT-7)


bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 1/11/2010 12:04 AM (GMT -6)   
he nasa lady,
well you think you are a researcher and scientist ............that great cause you never gonna do so much researching in you life now. the big trickster is the lyme and from what I am finding out if you get infected and didn't know it all these unexplainable diseases and conditions start appearing . So maybe think on this one. WHAT caused all this stuff that you have been diagnosed with. ?? a gluetin sensitivity??? I have Hep c so they blamed all my symptoms on that and none of my hep c friends had these symptoms.. look at your laundry list, Nasa? what could have possibly caused ALL of this? we need
more scientists . Alcholohics and drug addicts don't have as many serious conditions as you have. How old you now?
Forget the bullseye thing. half of us never had it. how long you been on the prednisone? How many of these sundroes and disease showed up after prednisone? do you have cirrhosis?

I have a freind who cured herself of the auto immune thing and she did it with wheat grass, ann wigmore program for an entire summer and more. for real. she is a naturopath in Seattle. where do you live?

this is gonna be your healing year all right. so you are waiting for blood work from igenex?

keep us posted

lots of love
Bucci
hep c , lyme
Dad has lyme


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 1:38 AM (GMT -6)   
Hi Bucci,

Well.....how exactly do I put this? :)

I have done a LOT of research on both celiac disease and Lyme disease already. I had my Lyme ELISA test several weeks ago, and have read tons of stuff since then.

Maybe that's the only thing that getting a Ph.D. actually did for me, is teach me how to do research....? rolleyes

In any case, regarding your comments, above:

So maybe think on this one. WHAT caused all this stuff that you have been diagnosed with. ?? a gluetin sensitivity??? I have Hep c so they blamed all my symptoms on that and none of my hep c friends had these symptoms.. look at your laundry list, Nasa? what could have possibly caused ALL of this? we need more scientists . Alcholohics and drug addicts don't have as many serious conditions as you have.

I suspect that these statements stem from lack of information....after all you have hep C, you do not have celiac disease, so you have never read much about celiac disease (or any other autoimmune diseases), have you? So you probably don't realize that some of the finest medical researchers in the world say that celiac disease leads to other AI diseases.

Here is a link, please read the article at the other end, which explains exactly HOW celiac disease allows other AI diseases to develop:

www.umm.edu/news/releases/zonulin.htm

Here is a link to another medical article that backs up this same contention, that celiac disease is associated with and probably responsible for other AI disorders:

spider.ipac.caltech.edu/staff/joanno/med_pubs/volta2001.pdf

And guess what, unlike your hep C buddies, my celiac buddies do have the same illnesses I have, plus many additional AI diseases that I don't have. Because celiac disease opened the door for them to develop fibromyalgia and rheumatoid arthritis and lupus and Sjogren's disease and Graves disease and Addison's disease and type-I diabetes and.....so many other autoimmune disorders I couldn't possibly list them all here.

Don't believe me? Just visit the forums at celiac.com and ask them: www.celiac.com/gluten-free/.

That forum has over 33,000 celiac and gluten-sensitive members, and a VERY large number of them have other AI disorders as well. Because that's what celiac disease does best....help develop more AI diseases.

Another link for you:

www.celiac.com/categories/Celiac-Disease-Research:-Associated-Diseases-and-Disorders/

OK....that's enough about celiac disease.

I also believe (and I said this in my previous post), that Lyme disease can both MIMIC and TRIGGER autoimmune disease.

I said, and stand by this statement: I have had celiac disease, Hashimoto's thyroiditis and psoriasis for a LONG time, more than 30 years (probably more than 40). I had ALL of these before I contracted Lyme disease.

I also said that I recently developed RA, AIH, lupus and fibromyalgia. I believe that Lyme and/or celiac disease probably helped trigger these. No one will ever know which triggered what. My rheumy believes that Lyme can trigger fibromyalgia, but he doesn't believe that Lyme can trigger AI diseases like lupus. I disagree with him....I think Lyme CAN trigger AI disease.

But it's not the ONLY thing that can trigger AI disease!

OK?

So somewhere between 30 years ago, and 2 years ago, I contracted Lyme disease. I bet I caught it less than 5 years ago, but who knows.

Now, you also asked me the following questions:

How old you now? Forget the bullseye thing. half of us never had it. how long you been on the prednisone? How many of these sundroes and disease showed up after prednisone? do you have cirrhosis?

I am 54 years old, I have been on prednisone since 6/7/2008 (which was stated in my previous post), and I have Stage II liver damage (cirrhosis is Stage IV, so no, I do not have cirrhosis...this was also stated in the previous post).

And finally, I'm sorry, but you will not persuade me to stop taking prednisone and use wheat grass; first of all you are not a doctor and should not try to do that anyway, secondly I HAVE CELIAC DISEASE.

If you want to see me REALLY sick, just give me some *&#@ WHEAT GRASS!! smilewinkgrin

tongue

BTW, I live in Southern CA, and I believe this will be your healing year too!

(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/11/2010 1:22:52 AM (GMT-7)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 1:47 AM (GMT -6)   
P.S. I already got my bloodwork from Igenex.....both Western Blots (IgG and IgM) are Igenex positive, CDC negative. Of course. :)
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/11/2010 2:39 AM (GMT -6)   
Hey everyone,

Please respect other people's diagnosis. There is nothing more irritating than someone coming in and telling you you "might" have something else or "something" must have triggered this when that person has just been diagnosed by a prefessional and told what caused it. Please be respectful to one another.

I mentioned that it was probably Lyme throwing everything off and I apologize for that.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/11/2010 2:42 AM (GMT -6)   
nasalady,

Wow! A scientist huh? THAT is amazing! I'm sure you've done your share of research and then some. I have a question for you. Did the prednisone help your pain and inflammation? In my case, I think it's the inflammation causing my pain because I sometimes get relief from an anti-inflammatory but I cannot take it all the time as it irritates my stomach.

Btw, good luck at your appointment.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 10:28 AM (GMT -6)   
Hi CajunGrl,

Yes, prednisone definitely helps pain and inflammation if the disease process causing them is autoimmune in nature, because pred suppresses the immune system and prevents the production of the autoantibodies that are attacking your body.

For example, as my pred dose was reduced to 5 mg/day, my RA started to flare up. I'm developing the classic RA nodules on the fingers of my right hand and the joints become very inflamed and painful during a flare. When the dosage was increased again to 10 mg, the flare stopped...no more inflammation, and greatly reduced pain.

I'm still worried that I won't be able to take prednisone and successfully battle Lyme disease because pred suppresses the immune system so well....this is definitely a major topic for discussion with my new LLMD on Saturday!

I hope you are able to find relief from your inflammation and pain soon!
Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


dogshowlover
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 1/11/2010 1:38 PM (GMT -6)   

Hi Nasalady,

Very interesting reading for anyone with lyme disease is ADVANCED TOPICS IN LYME DISEASE--DAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES by Joseph Burrascano Jr, MD.  He is the leading authority on the treatment of lyme disease.   If you google the title you should be able to find it.  You want the fifteenth edition that he has published, September 2005.

 

Check out page 12 where he talks about steriods and lyme diesease.

 

Very interesting publication

 

Linda

 


dogshowlover
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 1/11/2010 1:57 PM (GMT -6)   
Cool--Sorry I didn't see that.blush

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 2:02 PM (GMT -6)   
Hi Linda and Willy, thanks for pointing me to the reference.

I've read that paper by Dr. Burrascano, but the problem is, I'm already ON prednisone, and have been for more than a year. I just NOW found out I have Lyme Disease!

You probably know that you can't just stop taking prednisone.....that can actually be fatal. shakehead

You have to very slowly taper down the dosage and make sure that the adrenal system is working before you stop the pred, or you can end up in an Addisonian crisis....not good.

I'm pretty sure I'm going to have to get off of the prednisone, and probably stop the Imuran and plaquenil as well, but I'm not going to start tapering down until after I talk to the LLMD this Saturday.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/11/2010 3:19 PM (GMT -6)   
Hi Nasa,

I apologize. I didn't mean to ask thos questions challenging anything and other diagnisis. sometime email comes off wrong way. I was way not advising you to stop prednisone. I am on it for 2 yrs now. I was only sharing with you what I saw ONE person do with the ann wigmore wheatgrass program. way not telling you to do that.
let's see what else.?? The part about being a scientist ..what I meant was..now that LYME has been thrown into your mix , you have really opened a new door to a world of mass confusion and different opinions on treatment and infection and the co infection and the side effects and all that.

Nasa, I am right there with you. I'm not a scientist. My Dad was and he worked on the LEM project when I was a kid. he worked for Grumman Aerospace on Long Island. He lost more than half his adult life to LYME and all because of the misdiagnosis and inadequate treatment and all the different opinions on the disease from the doctors to the labs to the insurance companies and the government.

I'm not challanging your diagnosis. what I was saying is that all the other diseases or conditions they pretty much have come to an agreement that they even exist in the first place and they agree for the most part on treatments.

LYME for me is like three card Montey or the shell game. My doctor handed me a book with 13 DIFFERENT doctors treatments for LYME.

some of th people on this sight are very well informed and it came from YEARS of dealing with lyme. If it wasn't for Razzle, I would have completely lost my mind by now. She happens to be in same town where I am right now.

For me the one thing I can say in regards to the prednisone It is what made the lyme flare up and I have about 5 of the
conditions you are listing since I been on the prednisone. I don't have celiac or raynoids or official lupus.

and I don't have autoimmune hep c.


so sorry for upset. I wasn't chalanging anything. didn't mean for it to sound that way.

OKAY???

Bucci
hep c , lyme
Dad has lyme


OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 1/11/2010 3:37 PM (GMT -6)   
Not to get off subject, but ..............I am curious as to how "lyme people" feel they are doing on steriods; hc, pred, etc. I have heard many pros and cons of it and especially in regard to it being used while having lyme. Do you feel it has helped or hurt either of you?

I trialed hc last year and it sent me to the ER twice, I gave up after that and have managed without it. I understand that may not be an option for some, however, I have seen on some forums where it is suggested to be the cure all when it is surely not for so many.

nasa~ I truly hope you consider ldn and have an opportunity to research it before your doctor's appt. I really do think you may find it quite helpful for your situation.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/11/2010 7:10 PM (GMT -6)   
Weary Chick,
I started taking cortisone, then corteff (same thing) because when I did inteferon treatment for Hep c for only 10 weeks. I had to stop and my cortsol levels were low and my ACTH. So it made me feel better at first along with thyriod meds.
anyway even before I did the inteferon I went to head neurologist at NYU Medical and just from looking at my face he
wrote out a prescription for a blast of prednisone and I think it was tramadol ???(seizure meds for migranes.
I was petrified to take the prednisone and didn't even cash the script for the sizure meds.
We had a snow storm and I took 20mg of prednisone and shoveled out everyone on the block. It was like being bionic.

but I stayed away cause I just knew it was bad for adrenal in the end.

I was always flattened out so my different doctors kept playing around with cortisone. 2 yrs ago I crashed so bad I had to take 40 mg prednisone to get myself going. ever since I have been on 20 mg. what happened a a mont or so after was even more pain. especially in my chest. so I was functioning on 20 mg prednisone and roxy codone for pain with an adderal kicker a couple days a week. INSANE.. the chest pain was so bad and I was having gall bladder pancreas attacks.
I couldn't eat anything. I found out I had strongyloides parasite and it is deadly if you are on steroids and that was the chest pains. that was a special stool test from metametrix.
I have puffy face from prednisone and am crashing my ass off now trying to get off of it. I am down to 7.5 mg and now it
is dangerous coming down. So it is a huge trade off being on prednisone but some people have no choice.
I am determined to get off of it. It makes me too agressive .
I haven't heard anyone recommend it FOR lyme. only the opposite. plus prednisone is about 5x what cortisone is.
I think it best to check blood work for ACTH and cortisol levels.
that's my experience

bucci
hep c , lyme
Dad has lyme


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/11/2010 7:14 PM (GMT -6)   
also the parasites along with othe symptoms made my hep c doctor suspicious so she sent me to lyme doc.
the lyme doc told me the ticks carry parasites. I took Ivermictin and the chest and stomach pains all went away.
hep c , lyme
Dad has lyme


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/12/2010 12:36 AM (GMT -6)   
bucci said...

I apologize. I didn't mean to ask thos questions challenging anything and other diagnisis. sometime email comes off wrong way. I was way not advising you to stop prednisone. I am on it for 2 yrs now. I was only sharing with you what I saw ONE person do with the ann wigmore wheatgrass program. way not telling you to do that.
let's see what else.?? The part about being a scientist ..what I meant was..now that LYME has been thrown into your mix , you have really opened a new door to a world of mass confusion and different opinions on treatment and infection and the co infection and the side effects and all that.

so sorry for upset. I wasn't chalanging anything. didn't mean for it to sound that way.

OKAY???


Hi Bucci,

I'm sorry that my post made you feel that apologies were necessary! I didn't mean to come across as hurt or upset! In fact, I thought I was being sort of funny there towards the end.....kind of a smart-a&*, actually. wink

The main thing I was doing in that post was trying to make sure that everyone understood that celiac disease can, all by itself, cause other autoimmune diseases to develop. Even without Lyme.

Now in my case, I have Lyme Disease as well, which can also cause AI diseases to develop! So I'm REALLY in trouble....double trouble.

I would have replied earlier but have been in bed for most of the day due to pain issues. Had to leave work early.

Everything is *totally* OK! yeah

(((hugs))))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/12/2010 12:41 AM (GMT -6)   
P.S. This whole thing about getting off pred completely in order to fight the Lyme disease kind of scares me....maybe that comes through the wrong way, I don't know. But I am scared by all of this. I was told I had to take pred (and Imuran, which also suppresses the immune system) to save my liver from further damage. So this scares me. Big time.
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/12/2010 12:05 PM (GMT -6)   
Hi Joann -

It seems unlikely that you would be pulled off pred completely. You do have some treatment challenges ... antibiotics are metabolized by the liver/ kidneys so the doc should follow that very carefully. But the positive news is that you've found something that is treatable - and maybe you'll soon see some overall improvement.

Just a thought I had - were your IgM's positive? If so, this might be a way to bridge between your providers. Even if your Rheumy doesn't believe in chronic Lyme, the positive IgMs are evidence of an active infection. It would be worth pointing that out and maybe he will be more open-minded about your situation/ treatment.

I'm hoping that things will work out so you can keep working.
 
edit - just another thought.  Maybe a good treatment option for you might be to just start out with injectable or IV antibiotics.  Seems like my doc said they bypass much of the involvement of the liver and kidneys and therefore they are easier on your system. 


Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 

Post Edited (Agmaar) : 1/12/2010 11:30:09 AM (GMT-7)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/13/2010 1:05 AM (GMT -6)   
Just to let anyone that is confused about what nasalady and I are talking about.....

She was diagnosed with auto immune hepatitis. This is the reason she is on prednisone. I asked her about steroids because I may have to get on some myself from what my latest bloodwork is showing. My adrenal glands are off a bit and a low dose of hydrocortisone is usually given for that. I am not trying steroids to stop my pain but am hoping it helps.

I hope that this explanation clears everything up. Steroids are not good for people who have Lyme disease because it suppresses the immune system and can cause the bacteria to multiply BUT, some people do have to take it.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/13/2010 9:27 AM (GMT -6)   
Thanks Rich and CajunGrl; I appreciate your posts. Sorry for the delay in my reply. I'm actually in the hospital right now. I ended up in the ER Monday night with excruciating RUQ abdominal pain. They admitted me...so far all labs, ultrasounds, CT scans etc are normal.

I'm going to be really upset if I have to miss my appt on Saturday with my new LLMD!!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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