Just an update

IHL - If the herxing gets too bad, please call your Dr. You shouldn't be suffering continuously through your treatment.

Have you talked to anyone about your eyes - ie.your LL Dr. or an opthamologist? Just to make sure there isn't something that needs to be addressed?

Hoping you get through some of this bad stuff soon, and you have some moments of feeling better.

Hang in there!

I'm totally with Traveler on this IHL, please pass all this information to your doctor, and insist on it.
Chunks of blood in urine is not good at all!

I don't like the blood in the urine! Please see an Ob-Gyn.

Definitely make an eye appt TOMORROW! Do NOT wait!

Have you been evaluated for lupus?

Do you have any friends or family who can accompany you to these appts?

He has my whole history. He just said we have to start somewhere and so I'm in treatment for the infections. I guess time will tell what is and isn't permanent damage.

You might consider getting some second opinions on the Lupus and eyes with an ophthalmologist, not an optometrist.

It's better to catch Lupus earlier. I would take pics of your cheek and chest rash now to show the rheum when you go in. I took pics of a lot of my crazy skin symptoms to show my Drs. The pics helped them believe that I had something going on even though they did not think it was Lyme. I showed my LLMD when I went in too. It helped in her diagnosis.

I would also follow up on the bloody urine issue.

I'm also very sorry for your losses! You're under a lot of emotional trauma right now. Hang in there!

While that most certainly can be the case, and usually is for most Lyme patients - there's no good going to come out of waiting around for your Lyme doc to get all of this thoroughly checked out. True, finding another really good doc to take a look at you won't be easy, but it could very well save you a lot of suffering and/or issues later on.

IHL,

I'm glad that your doc is a real doc and had the courage to be on the news. I wish more doctors would do the right thing and put the well-being of his patients first.

If your LLMD already knows about your bleeding problem, I guess do whatever you are comfortable with. But if he does not know, I agree that you should at least call him and let him know especially if things are changing or getting worse. You are a young woman and you should protect your body as much as possible so that you won't get worse health issues.

Best of luck, and have faith in God that He will heal you.

He does know about all of my bladder issueS. I'll go pee 60 times in one day. I have nights I'll have to get up like 6 times to relieve myself. I pee what looks like pepper, and the chunks of blood. Also white stringy tissue looking stuff. I've had my pee tested about 30 times and nothing ever shows up for infection on the strips. It's been cultured and nothing comes up. the result will just say there is blood and tissue grew. It says a lot of the time that my sample must've been contaminated. ..?

I have regular blood work every 3 weeks. He checks in with me once every week or two and more if I email him or call him.

Right now he is fighting with my pcp to get her to approve things for my insurance. She is adamant that I'm just crazy despite my positive blood work.

I feel like I'm in good hands. He thinks that all of my problems are from the infections and I can make a 100% turn around with tteatment. So I'm getting treated for the infections and hoping that in time, all of these issues will resolve.

no other doctor wanted to treat me for anything besides depression and mood disorders. Ever. Despite all the weird bloodwork. Elevated crp, low complement protiens, anemia, borderline lupus, bad cell counts, bad thyroid numbers, high histamine.....etc. I've seen athe least 20 doctors since I got sick.

The doctor I'm seeing now is treating me. He found problems when no one else could. They all gave up on me when things didn't add up. I went to him one time and he knew exactly what was wrong. And went on to prove it!

By the way my sinus swab results are in and I have no more infection there!!!!! Yay!!!! So something must be working!

I'm just wondering what exactly you guys think is wrong with my treatment? If mycoplasma and lyme and CP are the cause for my bladder and eye issues, then treating those should make it clear up right? What would a mainstream urologist or ophthalmologist do? The urologist told me I had IC. and there is no cure and I have to figure out how to deal with it for the rest of my life. He recommended pain pills and a therapist. The eye doctor said my eyes were fine. My eyes were checked out in the hospital too with a thorough exam and a ct and blood work....eetc. no cause was found.

I know these are weird issues. I know it's a big deal. I know how sick I am. I take my medicine religiously. I have flare ups and herxes. I have good days or hours too. What more should I really be expecting?

I'm happy now too! I'm sick as a dog, but I can smile knowing that I'm going to get better.

I really want to know what you guys think about this. Really bad! If my symptoms are because I have these crazy infections and I'm treating them what else should I be doing? Going to an obgyn again to complain about the same things I have for the past 3 years seems like a waste. It's humiliating for me.

IHL:

Yes, I agree, your dr is great, and he did address this and gave you some treatment for it, unlike the other "drs". So, I would do exactly what you are doing. I just wanted to make sure that your LLMD knows about it. I think we worry about you and we are all genuinely trying to help, like you are a member of our family because I think it is hard for all of us to hear what you are going through. I was never hit by this as badly as you--and I think is because God knows I had to take care of my kids.

I love your attitude and I think you are finally in good hands. I agree healing won't be over night but you started, so with each day, there will be less time until you get well. I think you will become stronger and a better person despite the extreme difficulties you are in now.

I became stronger and equipped now to understand what is going on with my children who were also bit. So now I know I should take them to a LLMD rather than listen to the drs who keep telling us it's all psychological.

(Hugs) Be strong, rest as much as possible, and take good care of yourself, and above all, NEVER lose hope, especially now when you found a good doc.

It could be the side effects of the medications you are taking, you should speak with your doc as soon as possible.

I had forgotten you were in Oregon. You're seeing Dr. T., correct? I'm hoping to get my memory working better again.

There's a gal in Eugene who is working to get the word out about Lyme in Oregon. She has gotten people together a few times to protest and bring awareness, so maybe more doctors will be aware of it in the future. I hear that Hood River has a lot of Lyme cases.

Many Lymies feel worse in our wet winters, so hopefully you'll have less symptoms once summer comes.

The support group is in Southern OR?