I need your advice :(

Hi everyone! I'm a bit down today.

So, a bit about my history. Bit as a child in 2003. Recently got tested over a decade later and was Igenex IgG Positive and CDC IgM positive, so of course I was excited that I could finally treat SOMETHING for all the years of pain and fatigue along with obsessiveness.

After a month of biaxin twice a day, I have not herxed. I still have the same amount of pain all over and the same obsessiveness in doing things over and over and I don't know why. I am also still irritable and I tell my husband repeatedly how sorry I am for hostile or snippity. He feels bad and he takes care of me, and I am very thankful for him.

I was thinking I should go to a psychiatrist or maybe a rheumatologist? I don't know. I'm just feeling discouraged on treating lyme since I am not feeling better.

Can anyone share their thoughts on what I should do?

Side note: I also have hashimoto's and my tsh is still within range at 4.0 and celiac disease.

 

Sorry you are not feeling better but I must admit I think it's a bit premature.

Just so you know, most people don't herx until after being in treatment for 3-6 wks. so you're just approaching the end of that window and still might herx. But you have to be on an effective treatment for that to happen. Janet gave you a few examples why you might not be herxing.

People don't necessarily feel better for a long while after starting treatment. It all depends on their bacterial load and how well their body detoxes.

And, "speaking" of detox....just what all are you doing for detox?

You may know that detox is a vital aspect of healing. Your body has accumulated a lot of bug toxins over the years and they are what drive our symptoms. An effective detox protocol will mobilize those toxins and help the body eliminate them.

This means a number of detox methods are being used daily. Maybe you'd like to take a peek at the following link to see if you can add a few things to your detox regimen....or get one started if you haven't done so already:

www.tiredoflyme.com/detox-methods.html

And, Janet is right - most LLMDs have patients on more than one med. And, I would expect you to be taking stuff that addresses cyst forms of Lyme and also biofilm.

Are you seeing an ILADS-trained LLMD? That can make a world of a difference.

Also, I'm sorry to tell you that a TSH level of 4 is far from normal. Yes, thyroid-clueless doctors will say that's a normal TSH because it falls within the outdated normal TSH range.

Back in the early 2000's AACE (American Association of Clinical Endocrinologists) recommended lowering the TSH range with the high end being 3. Labs are slow to change their testing kits so countless people remain undiagnosed and undertreated.

In fact, anyone taking exogenous thyroid hormone who is optimally medicated should expect to have TSH lower than 1....and often suppressed (below-range).

Here's a link to an article written by a doctor who "gets thyroid":

www.thyroidscience.com/hypotheses/dommisse.feb.2008/dommisse.feb.2008.pdf

For whatever it's worth, I've been taking thyroid hormone replacement since early 2010. On a "good" day my TSH is .007. It's more common for my TSH to come back at <.005.

What's more important is that my actual thyroid hormone levels - FreeT4 and FreeT3 - sit near the tops of their respective ranges. These are the types of levels that keep me free from thyroid symptoms.

TSH is a pituitary hormone and not a reliable indicator of thyroid function. Looking at TSH to judge thyroid status is like looking at the odometer in efforts at guessing how much gas is in the tank.

True thyroid status is determined by looking at the actual levels of thyroid hormone that are available for the body's use - FreeT4 and FreeT3.

I have no doubts that your FreeT4 and/or FreeT3 levels are near the bottom ends of their ranges or possibly below-range. This is not healthy and could very well be contributing to your symptoms.

I hope you can convince whatever doctor cares for your thyroid to run the right tests. You can share the results here for interpretation.

No matter what, it's clear to me that you need a thyroid dose increase....and probably many of them.

Hope we've given you some food for thought and you can do things to get yourself headed in the right direction.

Great advice given here.

I would also concur that being on just Biaxin seems odd. I always had biaxin paired with two other antibiotics and Plaquinel (sp?).

I know the feeling on wanting to see results. I was so impatient and so disappointed every month when my appointment rolled around and I was adding symptoms to my list rather than taking them away. Treatment, especially when you have had Lyme for a while is a major marathon. Try not to think of healing in terms of time. You just need to keep you head down and push through.

As the other asked, are you seeing a Lyme Literate Doctor? If not, thats where I would start. A lyme literate doctor will be able to assist you with your symptoms, irritability included. Mine gave me some things to help.

If things are to the point you truly feel you need a psychiatrist, I would try to find one that is Lyme Literate. I see one now and he is great. Most mainstream Psychiatrists will have no knowledge of Lyme and the effects it can have on ones mentality. I know Traveler had a few names for some (if memory serves me correctly) and if you put up a post looking for a lyme literate psychiatrist (whatever area your in) others may also be able to assist. Most times, a regular LLMD can help you through issues that aren't extreme.

Hi everyone! Thanks for the replies.

Yes, I am only on biaxin 500 mg twice a day. I will ask my LLMD if I should see another doctor about my thyroid. My TSH seems to vary greatly. One day it'll be 5.5 and the next day it's a 3.0.

I do nothing for detox as I was not told to by my LLMD. Well, he never mentioned it. It's my impression that if I don't herx that means my body naturally detoxes well?

I go to see my LLMD in 10 days too.

 

Umm....there's no need to ask your LLMD about seeing another doctor about your thyroid unless your LLMD has been ignoring those TSH results.

Please know that TSH fluctuates throughout the day in the body's attempt at maintaining stable thyroid hormone levels.

Still, the TSH results you shared are waayyy too high and indicate the need for thyroid hormone replacement.

LLMD's are usually more thyroid-savvy than even endocrinologists.

That said, please discuss additional thyroid testing with your LLMD and ask about being put on thyroid hormone replacement.

It will be harder to heal from Lyme with a malfunctioning thyroid.

If your LLMD can't help, please let me know and I can direct you to some resources that will help you find the thyroid-savvy doctor you obviously need.

rowing mom-I finally took the minute it required to post a real link last night.

You have to post a real reply not a quick reply. Then before you paste the link click the url button afterpastingclickagain It will look like that. When you hit submit you will have a link.

Don't click on that.....it's just instructions. Not a link. You can also click on mCode Help for hyperlinks and lots of other info.

You can also use these brackets [ ] and inside the first set of brackets put the letters url and then after the link use the brackets again and use /url inside the brackets.