Lyme Update/Advice Needed

Hey everyone. I posted on here this past spring about my Lyme situation. You were all so very helpful then and I could use some more advice now. I can't wait for the day that I can "pay it forward" to others when it comes to Lyme and general health advice on how to actually get better.

I was diagnosed as positive on the western blot 9 months ago. Thank God there is no doubt left there. No co-infections showed up, though. My Naturopathic Doctor who is Lyme qualified has had me on the Stephen Buhner protocol, I believe. I have been using half a dozen different supplements at a time throughout the process.

My mainstays have been:
Cats Claw- 10 drops per day. This was very hard to work up to. But now its no problem.
Quintessence. 8 drops/day. Contains andrographis, Chinese smilax, Japanese knotweed, red root, stephania.
Nattokinase. 200 mg/day
AlliUltra. We stopped this in the fall.
Eleuthero Solid Extract. 1 tsp/day. For energy.
DHEA. Since October.
I am now taking some Biogest and GI Repair Powder to help with my constant reacting to food, etc.

Anyways, I was getting somewhat better throughout this process. It seamed that as long as that was the case, why stop? I didn't really care if it took a couple of years if I was improving. Over the first 6 months I started sleeping better. 9 hours straight without waking up in the middle. And falling asleep when I wanted to. Amazing! My heart has been beating in rhythm much more frequently. It isn't perfect, but not bad. My energy level had increased somewhat and I was hiking again. Nothing crazy, but a few miles at a time. When I first started the supplements my legs and feet hurt so bad sometimes I could hardly walk again. And my whole body would ache. That had improved greatly. My full body itch had disappeared. My blood sugar had also gotten a bit more under control too. So, I still have many other issues that are still there, but I was losing some of them.
But then I went November/December without any noticeable improvement. And mid December I had to stop 2 of my supplement so that I could take a couple more tests. The two I stopped were the DHEA and Eleuthero Extract. For about 1 week. Almost immediately things started coming back again. I assume it is related to stopping my 2 "energy supplements", but who knows. The full body ache I had this spring came back. My energy level dropped big time. My sleep has been terrible again. I can't seam to fall asleep or stay asleep when I do. Last night I was very excited to fall asleep around 1 am. But I was awake at about 5; not my choice. I was not able to fall back asleep again until after 8. Then I slept past noon. And I wake up again with no energy. My full body itch is also back. It is mostly my lower body, but also arms and chest. I am also back to having little or no desire to do anything. I won't blame that all on the Lyme, but I know most of it should be. I started up the 2 supplements again and the ache has decreased and my energy has gone up some. But they are not back to what they were before. My sleep pattern is still messed up. And the itch is still here. I also feel more nervous than normal after not having that bother me for awhile. about 3 days after ceasing the supplements I had my first bad panic attack in 2 years as well. I think my heart beat is still improved, though, which is great.

Sorry for the jumble of words. It is just bothering me so much to regress all of the sudden. Does this mean my last 9 months on supplements has done me little help? Apparently all I have to do is stop them for a week and everything comes back. Do I have a co-infection that has not been diagnosed and needs treating? Do I just need to do something stronger(antibiotics)? That is the way things are going to go at my next meeting, I think. Is my Lyme infection just stronger than we were hoping. I know I had a very strong infection before. I have just been hesitant to go the antibiotic route and my doctor has too.

Does anything jump out at anyone as to what might be going on? Thanks a million for any advice anyone can offer.

Ben

I hate it when things get worse, and it feels like you're backtracking. I also feel that people are judging me when that happens.

Margaret

PrairieWind, I started antibiotics and slowly began to feel better. After 7 weeks or so I was feeling 70-80% better, then I suddenly had a severe allergic reaction. I ended up in the emergency room and the ER doctor had me stop all medicine. After three days, the hives and itching went away so I started to introduce each of the two antibiotics at a time. During this one week that I was off the antibiotics my symptoms came back and was not able to go back to feeling the same way I felt before. I stuck with the protocol for another 3 1/2 months and when things didn't get better I switched antibiotics. Well, in the week that I stopped the old antibiotics and ramped up on the new one I suddenly worsen to the point I was before I started taking antibiotics. So the 6 months that I have been under treatment were lost just like that.

I do have co-infections and right now I am not treating them but the symptoms that I am experiencing right now are Lyme which I think that months of Amoxicillin and Doxy should have impacted.

Leaky gut can cause you to react to many foods and probably other things too. My daughter was checked once, before we knew she had Lyme, and it showed just about every food we ate frequently. I had to come up with some meals that excluded those she reacted to and that was difficult. She had some alternative allergy treatments that cleared up a lot of the problem, so we don't have to avoid them all now. I think chronic illness in general predisposes one to having reactions to foods and meds.

Also, drugs can accumulate in your system over time and cause problems. My dad had that problem after going through IV antibiotics for bacterial endocarditis. He agreed to go to my homeopath after he was done with treatments and the first remedy he was on started removing the excess meds from his system. He complained that it made him feel as bad as when he was taking the med, so I explained that it was clearing the meds out of his system and that he would improve once some of it was cleared out and he did. He just slowed down on the remedy so it wouldn't go so fast, making him feel worse.

Sorry I got off the topic of your post. :) I've been using alternative meds for over 25 years, so my mind goes a different direction than many people do. I wish you the best on finding the answers to your health issues.

Hi everyone, I've been lurking a few days here before joining. However I just have to ask Garden Peace what were the alternative allergy treatments for her daughter? Was it NAET? My son has Lyme and intolerence to gluten, dairy, garlic, and peppers. Its really hard to find foods he'll eat as he has always had food issues related to taste, texture, etc. and now that he has Lyme, his smelling is unbelievably acute. Thanks in advance for any help!

Thank you so much for the info, I really appreciate it!

Thanks for the advice guys. And sorry for the delay about replying.

Garden Peace - I have thought a lot about Leaky Gut and I do think that probably fits me. I just seams to explain so many of the immediate reactions I have to food now that I didn't use to have. It isn't just some lingering intolerance symptoms, it is within 5 minutes many times. My Lyme Doctor started me on a few different things to help with digestion. My new food allergy test results should be in soon as well. I hope this may clear up some foods that I have been eating while I shouldn't have been. Hopefully this can get me on the right track for building back up my digestive system.

Traveller - Thanks for the input as well. You are probably right on with my detoxing regiment. I need to get more consistent and better at doing this. Since your post I have started detox baths about every day. I will keep this up from now on and mix in foot soaks when I can't take a bath. And I have a brush that I will start using. I am usually very dedicated about food and my meds, but I sometimes slack when it comes to detoxing. Not sure why this is, but I need to fix it.
For lemons, I squeeze 1 and drink it most days. I usually just put in in a glass of water and drink it in 15 minutes and not throughout the day.
I do not have FIR sauna access, but will keep looking.
I really have never considered Candida and don't know much about it. I have started to look into it though. Is there some way to test for it? Or is it a clinical diagnosis.
I also do not know that much about Co-infections. It seams like they all overlap so well. I have read the intro page here and looked at some other sites, but I don't know. I am sure my Doc is keeping an eye out for them, but I guess I will bring it up next week. If I remember right, Bart might have sounded likely when I did some research last, but I don't know. Mainly because of the scratching.

Thanks again everyone!