This Darkness Got To Give

Well, yesterday was the one year anniversary of my troubles with Lyme. A very, very rough day. It was one year ago Father's Day that I went to the ER with two of my boys with the worst headache I've ever had. Two and a half months later I was diagnosed with Lyme. This after numerous tests and theories.

I've been seeing a highly regarded LLMD since January of this year. We were going to 'fine tune' my body as my symptoms have been almost exclusively head related (left side near ear).

Here's been what I've been taking for abx since going to the LLMD:

Jan/Feb/part of Mar - 400mg Doxy/day (this was double what I was taking prior to my LLMD)
part of Mar/Apr - Tindamax 3x/day
May - Tindamax 3x/day plus Bactrim (had AWFUL allegic reaction the third week on this)
June - Tindamax 3x/day plus Zithromax 2x/day

My LLMD says that I'm not an unusual case. But for someone who has hardly been sick his entire life, just pumping abx in my body day in/day out without any significant progress is making me worry whether this will be with me forever.

I take a mega-vitamin, magnesium, a b-complex, vitamin c everyday along with detoxing at least 5-6x/week. I also began taking a liver cleansing tea last week. My acupuncturist is scaling back my visits to 2x/month. I was seeing her once a week. She said four more times and then we'll quit for a while to see how it goes.

I go through some good days and then many bad days. Since adding the zithromax my energy level is just not getting there. Eating healthy. No weight gain...maybe even a little lost even though I'm not walking or doing any exercising yet. I keep telling myself my body is using the food to heal, that's why I'm not gaining any weight (I'm 6'6" 210lbs).

Admittedly I have a tendency to overdo it when I start feeling better. Memorial Day was the last time I felt almost myself. And that day I did A LOT. Since then it's been a downward spiral. I did make it to my business trip last week and held up fairly well. But that was a silly conference and I just went to my room to rest when I wasn't needed.

My wife and I have talked and decided for me not to do anything 'extra' for the next month or so. Of course I have business trips coming up (NYC this Wed; Chicago next Wed/Thurs). I have to work to support my family. and who is going to take the boys to their appointments?

I just don't see a light at the end of the tunnel. It's so frustrating. My support team (wife, family) has been phenomenal but I can't help but think that I'm missing things, spending time with my boys, work, etc.

Any additional suggestions/comments welcome. Thanks for reading.

Wow Shinji...your headache sounds similar to what I had early on. I went to the ER on three separate occasions, also to a nuerologist who ordered MRI's of my head which of course came back negative (and costs me a $1000 deductable...grrr). For the first month or so I had an uneasy feeling in my head which would only go away completely if I lay flat. Sitting was the absolute worst. Standing was ok, but flat made it go away completely.

My own research resulted in my own diagnosis that I had a CSF leak. In fact, when I went to Yale/New Haven ER (the thrid and last time), the neurologists there said that's what it probably was and it repaired itself. Sounds like that's what you had too.

But I was still stuck with the problem of discomfort in my head, and only the left side. Feels like your head is full of cotten. I was the one who figured out I had Lyme after exhausting all other options.

Anytime I exert myself too much I go into 'brain fog'/'zero energy' mode. But this Zithromax has really thrown me for a loop. Just can't seem to get a lot of energy back. 

Is your discomfort only in your head? Maybe we should compare notes since we may have started with similar symptoms before being officially diagnosed.

I just hit my one year anniversary of treating lyme (this time around) last month - it's rough, I know. If it offers any hope or consolation, I made my best progress right around that time!

After a year of different antibiotics, I switched over to Stephen Harrod Buhner's protocol - it's a lot of herbs, and then supportive treatments - vitamins, supplements, the usual, though I personally like his approach (and also having the hows and whys summed up neatly in his book) better than my LLMD's - there wasn't much structure or rhyme or reason to the supplements she was throwing at me. I have to say I've been feeling better since switching, though it's only been a month or so and there are so many other factors to consider, but I really do believe it's helping. At the very least I think his book Healing Lyme is a really great reference and might give you some ideas for directions to turn in if you're not getting the results you need from your current treatment.

Specifically, I recently started a tincture of eluethero - Siberian ginseng - it's a bit expensive compared to some of the other things I take but I've noticed an improvement in my energy that I think I can attribute to that. Might be worth looking into. Yoga practices specifically for energy have been surprisingly helpful lately too. I hope you find some answers soon - it will get better! Stay strong!

I know How you feel. I have been in treatment for 8 months and, although many of my original symptoms are gone, I still have fatigue, pain and paresthesias in my legs and these strange waves of dizziness. The last time I saw my LLMD they were super busy and I feel like they didn't take time to listen to me. I have been on ceftin and Zithromax for 2 months and feel like I have plateaued. I am thinking of seeing a naturopath as I don't want to be on the antibiotics any more. Good luck and I hope you feel better soon

Yes, I am detoxing on a daily basis. I even did so on my business trip last week in FL. The acupuncture comment I admit was a little surprising, but I was actually thinking of scaling back myself because I just didn't think it was doing that much. Don't get me wrong, I felt good when the treatment was over, but it wouldn't stay with me for more than 24 hours.

I spoke to my LLMD this morning as family members are worried about this sudden lack of energy and wanted me to reach out to him. He said it sounds like the abx are working and I truly believe it to be the case. I told him this abx combo has easily been the most difficult to adjust to. To both of us this is a sign its working.

For me, since I'm not exercising on a daily basis the tell tale sign of anything out of place is my weight. I'm 6'6", 210lbs. My weight can fluctuate on the plus side fairly quickly if I'm not exercising enough. I'm talking 5lbs or so. Since being on the Tindamax/Zithromax combo my weight has stayed the same which tells me my body is using the food as fuel to fight the Lyme. I know my body better than anyone of course and I truly feel this is the case.

I just have to keep eating...lol...and stay positive.