OK....time for serious questions

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??

JoAnn

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

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.

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

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....?

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!!



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

(((hugs)))
JoAnn

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.

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

Cool--Sorry I didn't see that.

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

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

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.

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!

(((hugs))))
JoAnn

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. 

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!!