Do I have Lyme???

I hope you'll bear with me, as cognition problems are my biggest thing. If there is a thread you can direct me to rather than answer (for probably the 150th time), that would be fine.

Nine years ago (2003), I went to the doctor because I had a little circular rash. I honestly don't remember what else was going on at that point. I just this morning ordered the doctors notes from that office visit. It didn't look like the typical lyme rash that I've seen pictures of. This was small (maybe 2" across), with just a little bit of a bull's eye look to it. There was a small (maybe 1 inch) circle in the center that was red. Then a white area and then, at around 2", there was another circle, but rather narrow.

So, I went in - showed the doctor the rash, and she ordered the Lyme test. It was the easy, quick one - which I now know is the ELISA one. It was negative.

So, life continued. So many things have complicated this. In 2000, I ruptured a disk in my neck and had surgery. That whole thing caused sleep apnea.

My brain got really, really bad. I had a sleep study which was "normal," (It really wasn't) so life went on a couple more years. By 2005, I was getting lost driving into town. They did another sleep study and decided that I did have sleep apnea. I thought perhaps that was the answer to my brain issues, and they did seem to get somewhat better.

I started having lots of pain in my neck - but, I had had surgery, and pain in your neck is to be expected in subsequent years. My back started hurting badly, but I've always had a bad back.

By 2008, my brain was going downhill again, but even more than that was the depression that seemed to come from nowhere - with no reason for it. I was having a whole list of odd things going on with me, with fatigue being one of the main ones. I had digestive problems, a recurrent yeast infection in my urinary tract and on and on. In desperation, I googled my symptoms and came up with systemic yeast - Candida. So, I started the anti-yeast diet and cut out sugar from my diet. I dropped 20 pounds and the depression lifted. I thought I was onto something.

By 2010, I was having enough brain fog and fatigue that I had to stop teaching the bible study that I was doing. (I wrote it all myself). In the summer of 2011, I had such tremendous neck pain, I could barely turn my head. At the same time, I had a migraine for a week straight. I was also having so much night pain in my arms and legs that I couldn't sleep. It was in my bones, though - not joints.

This April of this year, I had such profound fatigue that I couldn't function. With that, was brain fog so bad that I was afraid I was into early Alzheimer's. I was convinced my thyroid was also screwed up and maybe menopause was playing into it, too. (I'm 52).

I came up with this plan to make myself better - with exercise, sunshine, iodine, cutting out all sugar again, more sleep, etc. It was like a 10-point plan. I also wrote out all my symptoms for the doctor. I'll include it here, just to be complete:

Fatigue – sometimes extreme. Different from feeling tired from working hard or sleepy. It's like everything is heavy, everything is overwhelming.

Brain fog - Like mentally wading through marshmallows. Can't think clearly. Can't make connections anymore. I feel like that book - "Flowers for Algernon." In fact, I started rereading it and had to stop because it was just too depressing. I worry that it's early onset Alzheimer's. I used to be so intelligent. I could grasp things so easily. I was literally number one in my college graduating class. Now, I feel so stupid - like I'm not really here, like I'm just observing from behind a glass wall. It's like I'm losing myself, inch by inch. Another way to explain it is feeling like you've had two or three alcoholic drinks – slightly dizzy and mentally impaired – without drinking anything. Or, like when you've taken really strong cold medicine - only ALL the time.

Also:
Frequent headaches
Weight gain
Depression
Dry skin, dry eyes
Lack of sexual interest (big lack)
Pain in arms and especially legs. Sometimes so bad that I can't sleep. Feels like it's more bones than muscles.
Neck pain
Irregular periods, extreme hot flashes, impossible to sleep through
Digestive issues – constipation (and then often diarrhea), gas, acid reflux
Sleepy – I'm separating this from fatigue, because the fatigue isn't necessarily sleepiness. However, I am always sleepy, even with 10 hours of sleep. Supposedly, my sleep apnea is 100% corrected.
Puffy eyelids


So, the doctor sends me to the Neurologist and the Gynecologist. She also tested my thyroid (which was always normal), but this time, I insisted she test the T3 and T4 also.

The Gynecologist put me on HRT, which did help with the horrible hot flashes. The thyroid test DID turn out to be low on T4 and after another low a month later, she put me on a little does of synthetic thyroid.

The Neurologist ordered a bunch of tests. The EMG showed that I had impaired nerve function in both arms. The MRI of my neck showed that it might be causing me issues. The MRI of my brain showed white matter lesions, and that is when the first word of Lyme came up again. They weren't consistent with MS, and other than last summer, I don't get a lot of migraines - maybe a handful in my life. They were consistent with Lyme, and so they ordered another Lyme test (also the ELISA), and it was negative.

The EEG of my brain showed abnormal function in my left temporal lobe with a potential for seizures.

When I went back to the Neurologist for a follow up appointment, she told me that she wanted to test me for Lyme again (but also with the same test).

My brain is even worse than it was in April. I am dizzy/mentally impaired ALL the time. I can only think complicated things with extreme effort. Even a brainless novel is hard, now.

Does this sound like Lyme? And, if so, is there any hope for someone who has it in her brain?

And, if it is Lyme - and if I can find a way to treat it - is the damage already done to my brain? Will it ever get better again?

If it is Lyme, and I don't find a way to treat it - am I looking at dementia?

Hi WisconsinGardener ~ Are you from Wisconsin ?? I go to an LLMD in Wis who is a fabulous Doc .. If you want his Info you can email me .. When I went to him I was hardly able to walk and thought my life was over and within 6 weeks of being treated by him I was walking normal again and had alot of Improvements .. I am still far from "cured" but am doing much better ... I had the severe neck and headaches along with Short term memory loss and speech Issues ,, extreme fatigue and pain everywhere .. I thought I was going to die because no Doc could figure out what was wrong with me until I found a Doc in Beloit Wis who actually did Igenex test on me for Lyme and then when it was positive he sent me to this LLMD further up North in Wis .. Your story is all too familiar to many of us here ... I wish you well :)

The best thing I would say you can do for yourself is go the LLMD and let them do the Igenex test .. I don thing you would be wasting anyone's time .. The LLMD I go to is in Fondulac Wi... If you dont have Lyme I bet he can figure out what is wrong but everything you describe sounds like you have lyme and probably Co-Infections .. Lyme is a very Complex Illness these days its not just Lyme... Yes, the seesaw mentality is awful to deal with ..... Im sure there are lots of people on this forum that can verify that they too have had negative Lyme test but they were treated for Lyme anyway and got better ... I was lucky and found a Doc last year who "thinks outside the box" and already knew about Igenex testing , otherwise I have no idea what I would be "diaganosed" with by now or if I wold even be out of my bed and up walking like I am now... You really should give an LLMD a try .. It would be worth it to yourself :)

Just so that you know, WisconsinGardener, the Elisa test is just almost useless. Even the Western Blot misses up to 60% of those who are infected. These tests are designed to detect antibodies to the infection that our bodies are supposed to produce, but the infections themselves stop our body's ability to produce those antibodies. It's like trying to find that needle on the floor while blindfolded!

It would be best for you to go to a doc that is well-educated about these infections as they are very complex, unlike most infections. With the symptoms that you have described, I would be surprised if you don't have Lyme and maybe even a few co-infections.

Have you read through our "New to Lyme" thread at the top of the forum yet? It is full of really important information, symptom lists and good links so that you can learn some about these infections.

That would be the Cowden protocol. It's one that is used by many Lyme Disease sufferers, so it would be a good way for you to get started with something. No matter what protocol you choose though, be sure to be detoxing. As the bacteria die off they produce even more toxins that will most likely increase symptoms - in your case the brain fog would likely increase as well. At least it did for me.

There are a couple of other tests that have a greater sensitivity for the Lyme bacteria, but often those who have been infected for a longer period of time require treatment before they are able to test positive. Heck! Even the CDC says that Lyme needs to be a clinical (by symptoms) diagnosis! Here is a link to an article written by a Microbiologist named Tom Grier who is very knowledgeable about Tick-borne infections that talks about the different tests:
www.canlyme.com/labtests.html

Take your time and keep going back to the "New to Lyme?" thread reading things over and over again. It'll begin to make sense as you go along. It took me a while to get through all the info that was being offered here as well. Treatment works wonders for our brain fog and cognitive issues! And don't worry about how badly your thinking is messed up right now, things will get better as you detox and go through treatment. I had gotten to the point that I had lost almost all communication skills, but here I am now - my family is amazed at the healing I've had! You'll get there too.

Feel free to email me with any questions! All you need to do is to click on the little blue envelope under my screen name. Should you email me, please include your screen name so that I have a bit of help remembering who you are! LOL!

Well, I started on the Buhner core protocol yesterday, because I could get everything locally. I started with just the Cat's Claw and the Knotweed - one capsule of each two times yesterday. That's below the recommended starting level of four times, but I wanted to start very slowly. I made sure that I drank a lot of water (including a fair amount of mint tea with mint from my garden)

By bedtime, I had a headache and gas. Overnight, I went to the bathroom numerous times in huge amounts. Then, I actually dreamed for the first time in weeks. This morning my neck is more sore and stiff then it has been in a while and my head still hurts. Could all be coincidence, but to me, it is maybe a tiny hint that I AM dealing with Lyme and/or one or more of the things that go with it.

I just want to say that your symptoms are identical to mine and I was positive via igenex for lyme and clinically diagnosed with babesia...so far.

I want to second the detox baths - and coffee enemas! The coffee enema has been described as dialysis for the liver. Our livers work overtime with this disease(s).

Also, read about supplements for lyme sufferers. Personally, I eliminated a lot of my symptoms with magnesium and coenzyme Q10. I take a lot of other supplements as well. An important one is milk thistle for your liver health. It protects and helps heal.

I still have some brain fog, but my biggest problem is the debilitating fatigue. You described it perfectly.