Excellent Progress Update Part 2 - Lympickle, some answers to your ?s

So I finally have a chance to sit down and type this! I have been helping my 5th grade daughter study for her finals all week, and I have been working my butt off cleaning the house, b/c we have a cat even though my husband is allergic, and the shedding got out of hand and started bothering him tremendously. So, my daughter has one final to go, the house is clean, the kids are asleep, and the husband is at a dinner meeting. Whew!

So here I am, just entering my 5th month of treatment. Back in February I was clinically diagnosed with Lyme (test showed plenty of bands but not the right ones for the CDC) and just recently for Bartonella (my doc wasn't so sure, but now she is, despite the fact that my test came out negative).

I am currently on Bactrim DS twice a day (used to be on doxycycline but switched), and Zithromax 250mg twice a day. Plus herbs including AL complex, Teasel Root, and Grapefruit Seed extract (GSE). I also take Serrazymes, vit c, vit d, vit b12, magnesium, alkaseltzer gold, probiotics, antifungals (nystatin and diflucan), and phosphatidyl choline.

Except for the remaining muscle twitches and occasional muscle soreness and fatigue, I feel awesome. I have been very strict with my diet, cheating only every once in a while. I am now exercising regularly, with hope that it will help me heal even faster.

I kind of plateaued with the doxy, and was having trouble with the sun. So a month ago, my dr confirmed her suspicion of bartonella, which is why she chose Bactrim for me, b/c Bactrim and Zithromax are a good combo for Bart. Well, I herxed almost the whole month. During that time, I had stopped the GSE, bc that was causing me to herx too. I didn't want to overdo it. So once the herxing subsided, I started the GSE last week and herx from that now.

She advised that I continue with the Bactrim and Zithromax and add in the GSE as I did last week, and we will see where that takes me when I see her again in July. Her approach is awesome. When I first met with her, she saw how sick I was and didn't overload me with meds, she did it little by little, and I have come so far to the point that I would say I am 95% better. That last 5% is just the muscle twitching and muscle fatigue.

Now, she did discover that I have a tremor on my left side. She told me to put my arms out straight in front of me and close my eyes - and my left hand was shaking. My left arm and leg are the ones that got tingling and numb in the earlier days when I was very sick. She said that lyme attacks your weak spots. Well then that explains it. Because four yrs ago when I was nursing my youngest daughter, I slipped and fell on my tailbone. I couldn't put my hands down to protect myself b/c I had to protect her - so I pinched a nerve and had tingling on that left side for months after the fall. Anyway, she decided to prescribe Vitamin B 12 injections. I was already taking B12 but she said the injections can do wonders for the nerves. So we will see what happens. The tremor thing is weird though - I was wondering if it could be from something I was taking - and I did read when I got home that it can possibly be a side effect of diflucan. I will figure it out one way or another - time will tell.

So I asked her if the twitching is still a real lyme symptom or more likely just leftover irritation/nerve damage. She said its more likely leftover nerve damage, and that this is the symptom that is most commonly the last to go.

I asked questions for lymepickle, and I was interested in the answers myself -

is there a timeframe you need to have lyme in order to say that you will end up with chronic lyme? Her answer is no. It depends on each individual, and it cannot be predicted. She said she has had people come in after having lyme for two yrs and heal in just a couple of months. But they ONLY had lyme - nothing else. So those who have coinfections treat longer, and have a harder time getting rid of the bacteria, but that still doesn't mean they will end up with chronic lyme either. This goes along with the next question - what percentage of people relapse - there is no real answer to that. They don't relapse, they just don't treat it long enough the first time. If lyme returns yrs later, it is b/c of a traumatic event, another tick bite, or the person becomes immunocompromised.

what are the last symptoms to go - usually twitching and nerve issues (as I mentioned before)

How do you know if the lyme is gone and its time for the two month symptom free countdown? She said "you will know - when you no longer feel sick". Well, I most certainly don't feel sick anymore, bc I've got loads of energy, but somehow I still feel a little bit of it in me. Just remember how you felt before you had lyme, and deep down inside, you will know. She said she has had some patients in a rush to get off the antibiotics, they stopped too soon, and then had to start treatment again. In my own eyes, The key to healing is a positive attitude and patience!!!


What changes in lifestyle do we need to make after treatment? - Just keep the immune system strong!! Exercise and eat proper foods. I asked her if I could ever go back to my old diet, and she said maybe, maybe not. Some people go right back to everything and never have a problem. Others need to be 80% antilyme diet, and 20% cheating. The thing is, I never want to go back to my old diet anyway, I have been wanting to change my eating habits for years, and ending up with Lyme kicked me in the butt to do it, so I am not backing out now anyway!!

Chapelle! Thank you so much for asking those questions. I think it's really good to get another opinion from different Doctors.

So for the first point, how long does it take for Lyme to become Chronic. Well I guess that makes sense, because although mostly all of my symptoms were gone. I had some things like minor foot pain and I had to go pee so bad and could hardly hold it yesterday! I think this are bartonella symptoms. So even though the worst of the Bartonella is gone, like the extreme anxiety and insomnia, I still feel some minor signs of it in my body. It sure is taking a long time to treat!


"This goes along with the next question - what percentage of people relapse - there is no real answer to that. They don't relapse, they just don't treat it long enough the first time. If lyme returns yrs later, it is b/c of a traumatic event, another tick bite, or the person becomes immunocompromised."

So a traumatic event could set off a relapse or becoming immunocompromised? That is a good answer I like it, but it seems as though every last germ is never completely eradicated? I don't mind dead germs that are inactive, but it bothers me if there are germs left over that can still cause disease.

And yes... how do we know the Lyme is gone? So we should feel pretty healthy for at least 2 months and be patient with that! Okay... But I feel pretty healthy, but there are some issues I know aren't resolved, like yeast is now becoming an issue, a tiny bartonella symptom came up yesterday ( mildly painful foot), and I get some mild aches occasionally but they might just be normal aches.

As for lifestyle changes... I have always been pretty healthy, eat healthy (probably already ate 80% healthy anyways). I used to like to endulge with drinking beer on occasions... I wonder if I will have to give that up? Not that it's a healthy habit anyway, maybe it could be a blessing!

I tried the tremor test you described! Held both arms out with my eyes closed. They are completely steady. But I had like 1 or 2 twitches yesterday! I think they were related to the left over bartonella though. Argh... bartonella is a tough one to treat. I might have to buy another bottle of A-Bart.

I still need at least another 2 months of treatment for sure.

Thanks for asking these questions Chapelle! I will ask my LLD as well to see what he has to say.

I couldn't tolerate any alcohol! I had a glass of wine back on New Years and it made me sick and my head spin. Apparently Dr.B has mentioned Alcohol causes the Borrelia to release heat shock proteins and it makes the Borrelia more aggressive and angry.

I actually haven't tried to drink anything since that New Years glass of wine. I have been taking tinidazole which reacts strongly with alcohol though.

Ya as far as dormant germs go. If the germ is dead and just sits there I don't mind that. But I don't like germs that keep coming around and the immune system has to fight them. I guess that's what goes on anyways in our bodies though. I looked at research on cyst busters like tinidazole and Plaquenil. They kill young cysts very effectively, and older cysts will only produce 5 or 10% of the spirochetes they would have normally produced so it is a significant reduction. And the spirochetes they do spawn are tiny ones in comparison and less likely to cause disease, kind of like really weak ones. My LLMD actually said 2-4 months more of treatment and them I'm done likely with no risk of relapse because I got on this kind of treatment early. It's tough to say for sure... I think nobody knows if all the germs are eliminated. I worry about the bacteria that got deep into tissues places like tendons. Hopefully the medications will get there!

I love reading good news! I'm so happy that you're feeling better!!!

hi Chapelle,

it's such good news that you're feeling so good! that's great info you shared, thanks!
I notice you mentioned along with the AL complex, and GSE, also teasel root. That's one (the teasel root) I'm not as familiar with (I've only heard of it once before in Buhner's book, which I haven't read all of yet, but just started). Is that part of your llmd's cyst busting/biofilm regimen? I remember you said your llmd doesn't Rx tinidazole; so does she/he use teasel root along with the other two?

My son's llmd does want to start tinidazole now. We had his appt. last Monday and she wrote a prescription for it, but I told her I'd like to think about it a couple of days. She was nice, but didn't understand I don't think. I told her I would prefer to use something natural, and she did say she knows there are things out there, but that she doesn't use them with her patients, so she doesn't know the details (like on amounts, etc I guess.) She didn't throw out the idea of natural stuff, it was more her saying that that's not her area of expertise or what she's familiar with, so she doesn't do them with her patients. I kind of got the feeling she may be open to him using a natural cyst buster, but as nice as she is, I also get the feeling she'd be frustrated with me. Worrying about frustrating her or not isn't what is important I know, but I just want to make the right decision.
anyway, again, I'm so glad you may be almost done with this all! and thanks for the info and advice.

Post Edited (stacestar) : 6/15/2014 7:36:23 PM (GMT-6)

oh man, I am SO sorry it took me so long to write a reply - I cannot even begin to tell you how busy I have been. Kids are finishing school, I am going away on vacation next week, my ebay business is going thru the roof, and my husband keeps asking me out! "wink"

so anyways, I am feeling so awesome. The vitamin b12 injections are really helping. I barely have any twitching left. I stopped taking the diflucan, and still have the tremor - so I guess the tremor is leftover nerve damage too. I have been having so many symptom free days. I would say I am now at 99%!!!

lymepickle - I know its so hard to not worry about those cysts that may be hiding and what not, but all I can say to you is - you just gotta stop thinking about it. That's what I did. I am just following along with my protocol, switching it as my Dr recommends, and moving along week by week, and paying close attention to my symptoms, which are now very few and far between. My husband said to me over and over again - STOP THINKING!! I finally realized that's what I had to do.

inspired - I know, bartonella herxing sucks!! I hope you get over it soon!! Keep me posted on your progress please!!

stacestar - I feel badly most of all for not writing back to your questions sooner!! I am aware of the diflucan and Zithromax issue - it is not an actual interaction, it is just as you said, each drug has the same side effect with regards to the heart, and that can be very concerning. It is more of an issue with people who already have heart problems, and I was more worried about Candida than I was about that, so I took my chances. In the end, it didn't seem to be making much of a difference, and I was wondering if it was causing my tremor, so I just decided to stop it anyway.

as for the herbs, Teasel root and AL complex work directly against lyme. Neither one of them are cyst busters. The only cyst buster I am taking is the grapefruit seed extract, and all its doing now for me is giving me headaches!! I am going to try taking it next week again, and if I get another headache, I will be sure that's the cause, so at that point, I will reach out to my Dr and see what she thinks. My kids were never put on a cyst buster, only AL complex. However, I would be more than happy to speak to their pediatric LLMD and see if he would be willing to talk to yours. I hope I am not too late in responding to you!! Honestly, if I were you, I wouldn't give my kids Tindamax, bc I would never take it myself.


Thank you all for the positive feedback so far!! I will keep my reports coming in!!

sounds like a plan stacestar!!

guess what, my LLMD wrote an email to me asking for my help - she asked if I minded talking to one of her new patients who is really scared. She knows I am very involved on the forum, and was hoping I could calm her down a bit - she even said I should become an advocate and get involved once I am better. I really feel like this is my calling!! I hope to become a moderator on this forum one day!!

awe, so glad stacestar!!! xoxoxo