Did you ever doubt your Lyme diagnosis?

Missyou,
I'm sorry to hear you're having such a hard time. The brain fog and depression are particularly difficult to deal with. The only thing I can think of is when I read Dr. Jernigan's book Healing Lyme, he says that when we are treating with abx it leaves behind an ammonia build up in our brains that cause the symptoms you describe as well as many others.

He makes a tincture that is supposed to help alleviate this issue. It's called Neuro Antitox. I have no affiliation with this company whatsoever. I suffered from the same issues as you and as a result of reading his book and doing research on natural protocols I bought that formula and have been using it for 2 1/2 mos. and it has really helped. It wasn't an overnight remedy, it took a few weeks of using it to notice a difference but I can tell you I have not had brain fog or vision issues
for weeks. At least 2 maybe longer. I still have the depression but it only lasts for a day or two instead of a week.

I hope this helps. To be honest once I read about the Antitox I didn't do further research into other possible remedies but I'm sure others may be along to give advice. I'm being presumptuous and assuming you are using abx, but I feel like after almost a year of being on this forum it seems that people have more issues such as yours when using abx. I am on abx right now myself so I'm not advocating for all natural protocols vs. abx. It's simply an observation I have made which has caused me to question my own protocol many times. I'm going to continue treating with abx for another month or so then go to herbs. The abx are tough on my system.
At any rate, hang in there. Sometimes just when I think I can't take it anymore the tide turns...

Missyouall, I think doubting whether we have the disease is something that we all do from time to time.

How can we help but doubt it when our medical doctors don't believe it exists! And the symptoms vary, they travel, they come and sometimes they go. We have good days and bad days, good hours, bad weeks. This disease is a master of disguise.

I have doubted myself many times, even though I was fortunate enough to have classic bullseye rashes and a positive blood test. I know I have lyme and babesia, but when I see myself through an uninformed person's eyes, I cringe. I know some others must be thinking I'm some kind of nut-job, and I suspect my medical doctor does, too. But I'm not. We're not. We have a serious, systemic, mutifaceted disease that is very poorly understood by science, the medical community, and the community at large.

If it weren't for online communities, I hate to think where we would all be.

I think that it's very common to doubt the diagnosis, especially because of the lack of knowledge about it and the way that the medical community doesn't recognize it.

I do also doubt the diagnosis and had an absolutely positive Western Blot, have all of the symptoms of it, have been tested for everything else under the sun and it has all come back normal, and I herx like crazy when starting a new antibiotic. When I initially started abx. I had a very severe and noticeable herx; there was no denying that it was definitely a herxeimer reaction. But I do still doubt it from time to time because of how the symptoms can wax and wane and because I'm 8 months in to treatment and still not better.

However, there are a lot of reasons that it takes so long to get better:
Our immune systems are compromised
We sometimes have genetic factors that make it difficult for our bodies to detox
We may not be on high enough doses of abx. or the correct combination of abx.
There are many co-infections that may need to be treated

The list goes on and on... I've read that some LLMDs are starting to believe that we may even eventually find out that ticks are carrying other bacterial infections that we don't know about or even viral infections.

Remember that the lyme and especially bart and babs cause severe depression. The thing is, depression does NOT cause the severe physical symptoms that we have. Sure, someone that is seriously depressed or stressed might have a little pain, feel tired or unmotivated, or have a little loss of appetite, but NOTHING like what we go through physically.

I have heard that the new culture test by advanced labs in PA is very accurate. I'm looking in to the test and I'm going to ask my LLMD about it. From what I've read, it's more definitive-yes we have an active infection or, no, we don't. Although that still doesn't address the issue of co-infections.

I had the exact same thought today: "What if I don't really have Lyme?"

I can handle the aches and pains, but it's the mood swings and emotional instability that get me down. And the depression.

I doubt my diagnosis almost every day! It's funny because I'm being retested by a new doctor tomorrow and I'm sitting hear freaking out. What if the first one was wrong?

But I had a horrible month, and it was all because I screwed up my herbal treatment for babesia. I went way overboard and had a horrible herx. (long story) At any rate, that in of itself is diagnosis, yet I still feel unsure. I feel ya, who wants to spend all this time spinning wheels!? I'm into 17 months of this. Wow, I didn't think it would take so long!

As many have said, it's quite common to second guess a diagnosis of Lyme and the other tick-borne infections - especially when no progress (or very little) is being made. That's actually the best time to consider changing what you are doing! Not doubting the diagnosis.

I too doubted my diagnosis, and I knew I had at least Lyme years before I was diagnosed officially! I was in denial for many years as well before my diagnosis.

The depression is part of this disease - it can be just from always dealing with the disease and it's symptoms and the way that people treat us because of them - or an actual symptom of the disease. Either way, allowing depression to stay with you isn't healthy either. That's when it's best to use an antidepressant (there are several good natural alternatives too) for a short while until you can get past whatever it is that's driving the depression.

There's no need to add more stress to you life by trying to deal with depression on your own - remember, stress of any kind is our #1 enemy!!!

I was clinically diagnosed in 2007 after being diagnosed with Lupus and for the first month, I was happy to have a "name" for what ailed me, because the lupus symptoms did not fully match mine.
But then 4 months into treatment, I did doubt the lyme dx's
My Igenex came back negative, I never saw a EM rash (of course most don't) and I knew Lyme symptoms mimicked Systemic Candida, and other conditions..so I had my questions marks.

In any case, once I became a Naturopath I healed my body (not a name of an illness) and am now fully healed, but when my patients come to me telling me they have or think they have Lyme, I know where to target, but in all fairness, all Naturopaths treat the person, not the illness (even us Lyme Literate Naturopaths)
It's not my job to doubt the name of an illness, it's my job to heal the person as a whole. Whether they have cancer, Lyme, Lupus, etc.....

I was interviews by Reader Digest 4 years on a series they were doing on Lyme and in that article I said I doubt my diagnosis because there was no conclusive testing and the LLMD (though she was good), diagnosed me in a matter of knowing my story in 10 minutes.
Now as a health professional, I see that is just so wrong.

In any case, I think it's healthy to question the dx if you do not have a positive test because you could just be treating the wrong condition.
But one thing is for sure, no matter what is attacking you body, you know you're sick, so you need to make lifestyle changes regardless.

Post Edited (peacesoul) : 5/21/2013 6:20:07 AM (GMT-6)

This is one of the reasons my husband decided to go ahead with the Igenex lab testing. We don't have any doubts because he was tested postive for Lyme. Besides that, we also wanted to make sure we were headed in the right direction for treatment. It's also a "plus" that we can bring the results to any doctor who dispels a Lyme diagnosis.

Mike&uc; Are you gluten free? Were you testing for allergies or systemic candida?

If the testing that is available had a better accuracy rate (still have 50% of those that have the disease receiving a negative result), then I would push for everyone to get tested.

As it stands now though, even the best LLMD's will rely on clinical diagnosis, not the tests - so why would we rely on them?

Can you please clarify, Traveler? When you wrote, "so why would we rely on them?", does "them" refer to the best LLMDs or to the tests?
Sorry, feeling brain foggy and depressed today. Started .5 mg Lexapro yesterday and will ease my way up to 10 mg. LLMD believes the onset of depression is due to a herx from taking Malarone. This illness is unbelievably cruel. If something is successfully attacking it, it will throw another symptom at you to get you to stop taking the attacker.

Why I tend to doubt my dx? My Igenex results didn't seem to show much, but after speaking with me, my LLMD said, no, I think you have Lyme disease and I think it's babesiosis. He's very experienced and I've heard a lot of success stories about him, but I feel as if my illness, whatever it is, is unlike anybody else's in the world...that my illness is far more elusive and more clever than any doctor out there, and since I have only the good people on this forum to complain to, I spend a lot of time feeling really really helpless, lost, and scared to death.

The issue for me, Traveler, is that I have never been a "do-it-yourself-er," especially in regard to my health. I hesitate to even take an aspirin or cough medicine because my body is so sensitive and is easily thrown into a downward slide by who-knows-what. I would be terrified to add even a single herbal remedy without first checking with my LLMD, and even then I would be hesitant. I remember going to a woman herbalist back in 1997 and she gave me St. John's wort, which I know helps many people with their mood, and it made me feel absolutely horrible. I'm going to stick it out with my doctor for another year by which time, please God, I'll be feeling a heck of a lot better.