You have suffered terrible--and I don't know why--but I do believe there is a reason. Maybe you will be able to help others--but I truly believe that God has a plan and he LOVES you he really does.

I don't know anything about "thyroid peroxidase ab" but my thyroid has been messed up since I hit puberty--I didn't get diagnosed until 3 and half years ago. Let me tell you--I know that a bad thyroid can really mess you up and make you fell BAD. But it is easly to fix. The doc can fix it even if she ends up taking it out. I got my thyroid fixed first and then we found the lyme. This is all part of the horrible disease called lyme. Once you get the thyroid fixed you may start to see more results on treating your lyme--so hang in there.

Write me if you need to--but this is a good thing finding the thyroid--it may all turnaround now.

God bless you,
Linda
 

are you also taking supplements like magnesium, msm , CoQ10, and keeping away from wheat and processed carbs? also sugar
hows candida , because both lyme and candida can create depression
hang in there hun, treatment takes time , focus on whatever you have for ctreative outlets in the meantime
jan
 

I have to tell you that when I started Biaxin and Flagyl I became extremely depressed and this was something that I never had in the past. The flagyl must have opened a ton of cysts and I bet that is what the plaquenil is doing to you.

It turned out to be about a nine day herx and I improved a lot. I did have to skip a day of meds every so often just to get through it but I got through it.

Put the vicodin away and stay on this board because there are really a lot of people here who care. They helped me get through mine.

It will get better!

Best Of Luck,
Scott
 

You're going to need something that you can have faith in. If it's not biaxin/plaq, then do some searching and see what other options you haven't tried. Whether it's an abx you haven't tried or on to alternative treatments.

Don't accept anything that makes you feel hopeless. You can win the war!!!! Two years ago I was at the end of hope with abx. I'd been on every combo for 3+ yrs and had gotten worse. So, one day it smacked me in the face. If abx haven't gotten you well by now, they're not going to.

Alternatives are out there. Rife, naturopath, homepathic, detox, etc. Please be open minded about other possibilities.

Take care, Pam
 

quote:

---

Originally posted by lifewithlyme:
Thanks, guys...I'm seeing Dr. K....he doesn't think I'll herx anymore because i've been on abx for almost 2 years; he thinks I might not have bacteria anymore but just autoimmune disease...I don't know what to think..

---

For instance my first treatment was rocephin, I had a myriad of wild and crazy herx symptoms.

After that I started on Biaxin, completely different reaction. For me the biaxin herx was a massive amount of inflammation and the absolute worst brain fog I've experienced in, well, ever! I couldn't see, everything was cloudy. I couldn't think, I didn't understand how to do my job, I didn't know what people were talking about. I was in a daze, full time. Very disconcerting but I figured well this is really getting into my brain.

After biaxin I went to bicillin, totally different again, I only wanted to sleep and I ran a constant fever.

All that was to say you can and will herx when starting a new tx, if it gets to something your previous tx didn't. In the long run it's a good thing. More of the nasty little suckers dead.

*disclaimer: It maybe that no one else has had the same experience as I have but I doubt it. Please someone correct me if I'm wrong about this.

Also so you know, I suspect a lot of us have wanted to wake up dead at times, I know I have, lots. It'll get better, kiddo. In the meantime hang in there this herx will pass too.

As many hugs as you need to get you through,
trueblue

ps. Oh, and I think you should pass the vicodin around and we'll all have a party! It'd make the time go faster.
 

Here's hoping things start to improve soon.

Does it help if I have faith it'll do something? I can do that for you and be your cheering section. (I'm so not the rah-rah type but I'll get some pom-poms.)

(I'm about to start up on treatment after being off for 5 years and have taken a nose dive. I think it can only get better from here. Heck, if you hit bottom, where else is there to go but up?)

And thanks for calling me blue, it's my favorite color, that's why I picked the name.

Edited because I tried to format the last line in color and I guess I didn't know how. Heh, I do now.

[This message has been edited by trueblue (edited 09 June 2005).]
 

Have you checked with support groups for doctor recommendations? I drive 4 hours to see my new doc and it's worth it. He has given me renewed hope .

I also think it would help you to have a lyme buddy you could call on the phone when you need someone to talk to. I volunteer, email me.

I have read of Lyme patients whose thyroid function normalized when Lyme was treated adequately. Often.

Here's one bit of info i found when i googled thyroid autoantibodies, you have the world at your fingertips, keep looking-

The endocrinologist ordered a TSH level and antithyroid antibody levels. My TSH level was 3.29, which he said was normal. My thyroglobulin antibodies were high 32, and my thyroid peroxidase antibodies were high at 70.

When I questioned the endocrinologist about the elevated antibodies, he told me to do nothing but stay on the same dose of Synthroid. I asked why the two antibodies were high. His explanation was that it's normal for the levels to be high in people taking Synthroid, or it could be that high antibodies are simply normal for me.

That doesn't make any sense to me! I still have the same hypothyroid symptoms I mentioned above, and my spirits are down. Do you mind giving me your opinion?

Dr. Lowe: I'm sorry your spirits are down, but I certainly understand why. Many patients feel let down when the opinion of a specialist doesn't seem to make sense. Patients should find it uplifting, however, that through the Internet, they can usually find answers that do make sense.

Janet
 

I tried Levox and it didn't help alleviate symptoms, but it was worth ruling out.

It's a long haul and we all feel this despair & hopelessness now & then. I've lost faith more times than I can recall, but life has a strange way of pulling us along for the ride, even if we would prefer to give up. Their are enough success stories out their to use as motivation to keep fighting. So keep your chin up.
 

Does your doctor offer cytamel with the cinthroid? If not find another doctor. Cytemel (t3) is really good and helps a whole slew of people--if he doesn't have it I would move on.

L
 

Perhaps you meant to address your post to lifewithlyme?

Janet
 

Now, about your treatment. Have you been treated for babesia? This could be the missing link, as it has been for so many.

------------------
oops!
Lymetutu
 

A few days ago I started to feel better physically. Not a whole lot better, but enough that I've been able to shelve depressing thoughts (and I am on an anti-depressant too) for the time being.

I think the Plaquenil did something...don't know what...that stirred up the suicidal thoughts. Maybe that is the issue with you as well.

I wish you the best.

L
 

I have been there MANY times myself and know how youre feeling. I dont even know what to say that could help. Just know there are many people here to support you and help you through this.

I agree with Skyking. There are many alternatives out there. Please dont settle for a dr you arent completely comfortable with, even if he is a top LLMD. You CAN get well and you WILL...even if it is autoimmune at this point.

My thoughts and prayers are with you.
xo
 

Its very negative view and I don't believe it. This other lymie was very bummed out after that, too, although maybe his approach will help her (plaquenil and more IVIG) I think the body can recover and go out of autoimmune once the bug is reduced.

Why don't you try getting treated for babs. DOn't even bother testing for it, just treat for it, it seems to be a hidden factor in bad cases.
 

God bles -
Cigi
 

------------------

 

TroutScout mentioned the iodine/iodide combo called Iodoral which he says really helps. You might look into that.

Hang in there. Giving up means that Lyme wins and we don't ever want Lyme to win. God Bless. Hiker
 

I also am two years into my treatment and find it to be a very hard time. You expect that you should see improvement. But it is such a slow, tenative, experimental process to find a protocol that works for each individual.

Please know you are not alone. All the drugs we have and at times you can stare at those bottles and truly think...the fact is you did not act on it. You have the spirit and fight in you.

You have support and are not alone. Next time just hop on to this board and cry while you write. Someone will be there with a shoulder for you.
 

"If you're going through hell, KEEP GOING!"

I really like that saying, it's a head nodder for me

Take care of yourself!

 

I am so sorry your treatment took such a detour!

There must be something out there, that is going to help you!

quote:

---

Originally posted by oxygenbabe:
Why don't you try getting treated for babs. DOn't even bother testing for it, just treat for it, it seems to be a hidden factor in bad cases.

---

Hiya, this is an important point for many of us. Although after a year of sorta success and backsliding, was tested for babs and was + so went on tx. And, I'm very happy to say, after 7 weeks (and 4 more for good measure), I'm doing MUCH better.

In the Support section I wrote a post called Bottoming Out -- I was truly in a hopeless, what's the point time. People told me "it's the mepron talking" and they were right.

I came out the other side and I didn't think it possible. And we're only talking a couple weeks ago

Keep talking it out, we're here.
StinkBug

At any rate, if you do have autoimmune issues, there are a few llmds in NJ who deal with both, and I believe a couple of them are rheumies.
Dr. B sends patients of his to one of them
in NJ with autoimmune issues.

Maybe you can address both. Furthermore,
all the Biaxin you have been on may have
caused your body to become resistant. Maybe
you need another combination, further testing
that is more specific to particular autoimmune issues before excepting such a
grim dx.

My llmd believes autoimmune can be brought on
by infections, so I am being treated for both.

I do understand your despair and have been
there. Don't give up; I don't think Dr. K
is the "right" doc for you, and there are
others who could at least help more with
the autoimmune concerns.

If you email me, I will send the names to you.