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Posted 6/3/2017 2:51 PM (GMT 0)
Hope this will help/inspire those who may need to know there's a light at the end of the tunnel. But that you also have to be careful.

I've been treating both Lyme and Bart now for two and a half years. With Dr. F in NJ. She and her staff have been great. For the past year I would say I was more or less 85-90% of my normal self. This is up from probably 10% when I first saw her. I was in bad shape. Im still on abx, along with an excellent probiotic. A few supps. Been doing almost everything I want except running which I more or less know I'll probably never be able to do again. All of my symptoms are in the left side of my head and the jarring of running just doesn't play well.

The key for me has been listening to my body and knowing when to shut down and rest. This and sleeping a minimum of 8 hours a night. I did do the GF thing when I was in really bad shape, but I've slowly gone back to eats just about whatever. My family and I eat almost all organic and are very healthy eaters. However, there is one weakness I have that may very well have knocked me back down a few floors. It's name is sugar.

I have a bad seeet tooth and have really been indulging this calendar year. Too much I tell myself but I always come up with justification to have some chocolate, ice cream, whatever. This indulgence along with a wicked business travel schedule finally caught up to me this past Wednesday. That evening I had the worst night I've had for probably two years. It was truly awful and very scary. Head crap wouldn't calm down and my heart, while not racing too fast, wouldn't slow down enough for me to get to sleep. Sweating. This happened while I was away on business which made it even worse. I made it through the night and back home late yesterday. Now I'm going to spend the next week doing almost nothing until I feel okay to do more.

Bottom line, bank those good days people and don't withdrawal too much when you need that extra boost. It seems like I have and I'm a little frightened at where I'm at now. But I have the best support team out there and I just have to stay positive that I can get through it again. Trust me, there were days when I didn't believe this. But you will! You will!! Believe it!!!

Be well.

april
Posted 6/3/2017 2:57 PM (GMT 0)
Hi April!
I'm glad that you are doing so well, and disappointed that you are having issues again! With that sweet tooth, and the indulgence, have you looked into yeast and fungal issues?

I'm really glad to hear that you have such a wonderful support team! That's definitely a bonus!

Please do let us know how you are doing and if we can be of any help!
Posted 6/3/2017 3:00 PM (GMT 0)
I'm hanging onto your words for hope.

Thanks so much for your encouragement 😊
Posted 6/3/2017 3:06 PM (GMT 0)
Hey Trav,

Yes, that's my guess. The yeast may be getting bad. See, with my travels it's tough to take the refrigerated probiotic with me so I've been taking a lesser probiotic for probably a third of this year. The plan is to cut out sugar completely, except fruits and get back to my regular schedule with the probiotic. And I'll probably take it with me the week after next as I'll be away all week again. The travel has definitely taken a toll on me. The tough thing though is sometimes my body doesn't exactly throw out the warning signs that I need to scale back. What's positive though is that my mind 'wants' to do the travel but my body is saying no go. Before both my mind and body were both saying no.

Day 3 of no sugar today. Would also like to lose 5 pounds or so...this should help with that too.
Posted 6/3/2017 3:13 PM (GMT 0)
Hi April

Thank you for your post. I'm so glad to hear you're doing so much better and very sorry about the flare.

I'm starting to have the lets go! brain now and the body says ok ....till about 6 pm ish. You are so right about trying to hone in finding the cues that it's time to hit the couch.

I think I'm finding the Candida really has more impact Thani realized and lately the molds too, I decided to take a break from the tx on mold but back to it now.

It's really hard to tell you know, is it Lyme or???

Take care and feel better soon!
VCL
Posted 6/3/2017 3:52 PM (GMT 0)
April good to know you like Dr. F and her staff. I've heard mostly bad things about her over the years. Sugar seems to be bad no matter what state you're in with treatment. It is an inflammatory, feeds the bugs like spinach to Popeye. Best to moderate it if you can.
Posted 6/3/2017 4:02 PM (GMT 0)
We do have a very wonderful and detailed post about Yeast/fungal issues at the bottom of page 2 of our "New to Lyme?" thread. Maybe reading through it will give you some more ideas to help yourself 'get back on track' as well?

I agree that traveling presents with so many hurdles! I'm so grateful that (a) I don't have to work and (b) I don't have to travel. I used to do some traveling with hubby for his work, but that's completely different - we had a travel trailer that we took everywhere so that I wouldn't have to keep "changing homes".

And don't you just hate that? My body doesn't tolerate sugar, so I don't have that temptation, but I have that happen with my adrenals - just BAM and I'm down. I do hope that you are able to get this under control quickly!! Let us know how you are doing, please!!
Posted 6/3/2017 4:09 PM (GMT 0)
I'm sorry to hear you are having a flare but reading your post was helpful to me today so thank you for sharing your situation. A week of downtime recouping sounds like a great idea for you, I hope it turns things around.

I haven't been on here in a while because I have been doing well and enjoying life but I do have bad days if I overdue and its really discouraging. Today is one of them. I had a long overdue dinner party at my house last night and was on my feet running around getting ready the last 3 days. Today I am very achey and have muscle pain and complete lethargy, headache etc...

Its interesting that you say you don't think you will be running. I love exercise too and I have tried to get back into high intensity in the last few months but it sets me back so I can relate.

And yes, the eating discipline gets tough. The other day I was in line at the grocery store behind a women who was buying one thing, an amazing looking bakery cake for her boyfriends birthday, complete with the icing flowers etc... I had my cart full of organic foods. I remembered the days when a cake was just a cake to enjoy and now its a host of health issues. I am grateful for awareness and wouldn't trade it but balance is a beautiful thing too. We need to remind ourselves that we are human, have self compassion, and that an occasional treat is okay. Sounds like you are smart to address sugar right now. I need to reign in caffeine a bit...

It would be great to hear from others that are in the 85-95% of normal category. I have been on herbs alone for over a year after many years of antibiotics and I am so grateful but I wonder if I will ever get past these cruddy days that happen when I get tired and busy.

I dont even know if antibiotics would change this for me. Seems more like my new normal than active Lyme and co-infections.

How much longer will you be on antibiotics? Take good care and let us know how you progress this week.
Posted 6/3/2017 5:15 PM (GMT 0)
Hi April - Sorry you're experiencing a flare in your symptoms...but you've made adjustments - and hopefully it will be a quick turnaround for you...and you are back to feeling better.


I hope you can heal completely and be able to run again.

My hope is that I can run and play tennis again one day...but not sure if that will happen.
Bike riding has turned out to be okay so far. But I've only ridden on flat terrain and for a short time.

Keep us posted! We're rooting for you!
Posted 6/3/2017 5:25 PM (GMT 0)
Dr. F and her staff can be a challenge but if you go in with a positive attitude she will do everything in her power to get you back. She is very, very aggressive in her treatments and doesn't sugar coat it. Her appts are almost always booked solid for months in advance so she must be doing something right. But as with all doctors, she may not be for everyone.

I should say too, during my last visit with her we even talked about stopping the abx in July when my next visit is scheduled. I was doing so well!

Thanks everyone for your encouragement and to those who can draw strength from this...keep up the fight!
Posted 6/3/2017 8:45 PM (GMT 0)
April, I was a very impatient patient. I would feel good and overdo it and then pay dearly for it.

I so understand. I am now over a year with no meds or herbs and doing super well. I won't even chance overdoing it even now.

We went for a bike ride in the hills yesterday and after about an hour I told hubby, "I think that is enough for today." We packed up and went home. I just am so cautious and I am slowly moving up to where I can ride all day long.

Girlie, I so hope you can play tennis again. I know how much you love it.

At my age, it is swim and bike and slow hikes. I even got me trekking poles for my walks. I never thought I would buy those things.
Posted 6/3/2017 10:15 PM (GMT 0)
April -

I'm so sorry you're not feeling "yourself" again. I'm not going to call it a relapse - because I think you've nailed the trigger. You just overdid it on a couple fronts...

I would encourage you not to see this as "being sick again" or a relapse or anything like that. I think the difference is that you are no longer fighting the infection(s) on an intense basis but the goal posts have moved a bit. Your level of tolerance for pushing the boundaries is narrower... but that would also be true from growing a little older.

And... I think that our experience through this crazy Lyme & Co journey also retrains our brain in how it listens to and interprets the nuances of health and wellness. We notice more things, we're more aware of links, connections, triggers, consequences, etc. And we know what it's like to feel our best and our worst and we've catalogued everything inbetween!

After developing a yeast/fungal issue, it's just right there waiting to surge again. So our diet habits have to change - from all my research, that seems to be most people's experience and I can't tell that anyone's worked around that cold, hard fact. Sugar/simple carbs are the enemy.

If you still crave them, it's entirely likely that your y/f overgrowth is still higher than it should be - you really shouldn't be craving it (well, not YOU but the yeast creates the cravings so please don't be hard on yourself - you are not really in charge where y/f are concerned).

Here is the y/f overgrowth thread Traveler mentioned...
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

You will be back to "normal" pretty soon. You already know that rest is THE most important thing right now. Your body is demanding it. Secondary is getting the y/f under control, and once you do that you'll feel less fatigued, too.

Please let us know how you're doing!

-p
Posted 6/3/2017 11:52 PM (GMT 0)
Figured out another culprit...non alcoholic beer. I've been having one a night for a while now, never more than two but they certainly don't help with the yeast intake.
Posted 6/4/2017 1:34 AM (GMT 0)
I know... I really really miss my citrus heffeweizen. Although I'm sure most don't qualify that as real beer but I loved them! But it is pure sugar to your body with some good yeast thrown in.

-p
Posted 6/4/2017 12:21 PM (GMT 0)
I just can't believe things have gone so south without any indicators that I should scale back. Very frustrating.
Posted 7/19/2017 1:39 PM (GMT 0)
Hi April. Thanks for your post. It's nice to hear that there is light at the end of the tunnel. I started seeing Dr F in early June. I have my second appointment scheduled for early August. She seems very bright and took her time with me. I was previously considering going further away for treatment but I wasn't sure if I could handle the traveling. So far I am happy with her. Currently on 250mg Biaxin and 500mg a Valtrex daily. She also prescribed 50mg Tindazole for one week each month but I've only taken it twice so far and both times my symptoms flared so bad I didn't take the next dose. Very lightheaded and dizzy. I guess a herx. Did you experience the same reaction? Also what dose did you start on? I seem to be very sensitive.
Posted 7/19/2017 2:04 PM (GMT 0)
Tindamax (Tindazole) was awful. I started on a lower dose as well and worked my way up eventually to 500mg twice a day. But those first few months on it I could barely function. It's the Lyme form of chemo.

Good luck.
Posted 7/19/2017 2:18 PM (GMT 0)
April, I am healed from lyme for over a year now and I have to be careful no to overdo anything. If I do, I start to feel "lymie." Not sick, just a feeling that things are a little off. This is so hard to explain.

It's not really a symptom returning, it's just feeling like I am going to be sick. I guess some call it under the weather? I know I am not explaining it well.

Anyway in this year that I have been in remission, I have learned the warning signs. I just stay on a very level road. No extra sweets, alcohol, partying (staying up late), and even no extra exercising (this includes yard work).

Days come up that are super full, stressful and tiring. On those days I take time for me. Even if it is 30 minutes. Just to breath deep. Many times I will just drink some cool water. Busy days distract me from enough water, I know that for sure.

I do like your expression of banking those good days.

With so many years of antibiotics, you gut has to be feeling the effects. So I agree with the yeast/fungal aspect that may be showing up. For that, look into bone broth. This will work wonders if it is the beginning of a yeast/fungal problem. It won't hurt a chronic problem, but it won't be enough alone.
Posted 7/19/2017 2:38 PM (GMT 0)
Tests have come back just recently for those who are interested and/or following this thread. I have some immune cells that aren't producing antibodies and I'm trying to stimulate them with Samento. From there I'll add Banderol.

Also dealing with yeast buildup. Going with a yeast-free diet and taking something called Yeast Balance, recommended by my Naturopath. Also taking different strains of probiotics.

Lastly, and this is one that I'm doing some research on, and could be the most interesting. My EBV came back reactivated. My doc wants me to start Valtrex as well as bumping up zinc and vitamin C. My Naturopath wants me to get checked out for shingles, particularly the one called zoster sine herpete. This is without the rash. Problem is, from what I can gather, I would have to be tested via spinal cord blood for the Varicella-zoster virus (VZV). With my suppressed immune cells issue I don't think this test can be taken.

Any of this make sense to anyone?
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