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My body is falling apart and I feel like I'm going crazy...and I'm only 24!

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Lyme Disease
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Posted 10/6/2010 11:58 AM (GMT -8)

I have been getting progressively sicker for almost 6 years.  I have been to 15 doctors, had countless tests done, and no one ever had an answer for me!  Finally, 2 weeks ago, I went to a Lyme specialist, at the urging of my mom. 

For the FIRST time, my multitude of symptoms not only made sense, but were all related.  I have started on supplements to boost my immune system, am getting several tests (CTs and MRIs as well as blood tests), before my treatment begins in a few weeks.

 

I have a few questions:

1 – Does anyone else have horrible food cravings (especially carbs and sweets)?  I think about food constantly and always need to have something to munch on.  It has taken over my life!  Also, my digestive system has gotten so bad (that is my main symptom), that I can hardly eat anything anymore – Will this ever get better?  I am afraid I will have to survive on rice and veggies for the rest of my life…

 

2 – Does Lyme cause cavities and tooth pain?  I had never had a cavity until I was 19 (about 2 years after I got Lyme), and have had several since then.

 

3 – How bad is the herxheimer reaction?  I have heard stories that it is awful, and I would just like to know what to expect.

Thanks!

Posted 10/6/2010 12:19 PM (GMT -8)
Yes lyme can cause tooth pain and food cravings. It can wreck havoc on just about your whole body and cause the strangest symptoms. My herx was really bad in the beginning which made me very leary about taking the same drug I stopped a year and a half ago because I couldn't take the herx. However, this time around I don't feel near as bad.

I will say be very careful what you eat. With lyme, you cannot eat sugar. I found that before I knew what was wrong i was worst around Halloween and Easter and it was due to the sugar consumption. My heart raced and pounded. With lyme you really have to watch your sugar intake. Best of luck to you. This website will help you incredibly.
Posted 10/6/2010 1:07 PM (GMT -8)
((HUG))

I had Candida overgrowth and probably some other things overgrowing in my gut that caused WICKED food cravings - especially for carbs and sweets. I went gluten and dairy free recently and it seems to control it really well. I lost 12 lbs in about a month! But the main difference for me is the control I have over food now - seriously, I would feel like I was going to DIE if I skipped a meal or felt the tiniest bit hungry.

I also did a few rounds of Nystatin for Candida and Diflucan for resistant yeast in the gut.

I'm exactly with you on the digestive issues - even having trouble with rice and veggies. I'm going to my np today so we'll see what she has to say.

I will say that the diet changes I made recently seem to help immensly. I did want to kill someone while I was detoxing from the sugar and carbs, but I'm so glad I'm in control now!!!

Good luck!
Allie
Posted 10/6/2010 3:58 PM (GMT -8)
To be honest, the herxheimer reactions vary from person to person, and you will find your reaction is different for each medicine you take. Learning to detox and manage your health can help to control the severity of reaction. Overall, the reaction is a sign that you are killing off the bacteria, and that can make you feel really good to know that you are on your way to getting better.
Posted 10/6/2010 10:38 PM (GMT -8)
I think all I ate for the first two years was sugar and carbs. I was so sick I just didn't care...and I've heard MANY stories from people who claim they were down to just three or four foods they could tolerate.

I haven't had any major dental problems from Lyme, but have heard others complain of tooth pain, etc. and there are a multitude of articles/books that address the fact that teeth play a big role in keeping Lyme bacteria alive (not sure the specifics on this)...

Herxes all vary, from person to person, and also from antibiotic to antibiotic for the same person - there are some great videos on youtube.
Posted 10/8/2010 4:58 AM (GMT -8)
baristanomore, I was addicted to Pepsi and any other empty-carb food that would give me "comfort". I have cleaned up my diet to the point it even astounds me. Digestion is tricky when you're sick. You might look into enzymes, hydrochloric acid, juicing, probiotics....while avoiding anything that can feed yeast. I had a friend some years ago who had such severe food allergies and environmental sensitivities, that for weeks all she could eat was squash. She's living proof that a limited diet can be done. Last I heard, she's 80% back to normal diet....w/o sugars!

Dental problems....90% of my teeth had huge amalgam fillings, two R/C teeth, jawbone cavitations causing 8 surgeries, now watching receding gums, etc. Definite yes to dental problems being caused by lyme.

Herx is different to different people and different abx.

You might want to get the DVD "Under Our Skin" available online so you can visually show your friends what you're fighting.

I'm finally, finally diagnosed with lyme so I'm attempting to put everything I've learned together to actually get well this time. You are only 24 with more information and knowledge than I had at 50....You will endure and you will be successful at beating this. Peace and healing....
Posted 10/8/2010 8:14 AM (GMT -8)
I cut back on sugar and white flower, but I don't think I feel better.
Posted 10/8/2010 2:31 PM (GMT -8)
Simela, Considering what you've been through, I'm not surprised although if you look at the whole picture it has to be helping your immune system by not stressing it with sugars, white flour and empty carbs. You're not just dealing with lyme....you have responsibilities (stress), you had an accident, you really haven't been on treatment all that long, etc. etc. Eliminating sugars and empty carbs is just something nice you can do for body and maybe healing will happen faster?????
Posted 10/8/2010 7:08 PM (GMT -8)
You're right, Mamyou! It is just one more think that I really enjoyed (love the sweets) that I am giving up in this battle. I've had 2 very bad days, I think I am in that cycle. Also, interestingly, someone here pointed out that lyme cycles every month, while Bartonella cycles every 4 days or so. In that case, I think I do have Bartonella. Sore soles have not gone away, even on my best days, when very little if any of the other symptoms show up. My LLMD suspects I have bartonella.
Posted 10/8/2010 8:21 PM (GMT -8)
I just have to ask, for those of you who gave up sugar and/or carbs - have you been tested for adrenal fatigue? I was tested for that at the same time as I was tested for Lyme and I have that also (adrenal fatigue). I have been on supplements for that for over a year now and it has made a huge impact also - fatigue has improved, lost weight and belly bulge, cravings for sweets has gone waaayyyy down, etc. Lyme causes adrenal fatigue too. I had the saliva test done, so obviously would need to be done by an "alternative" type doctor - "regular" MD's don't believe in that test either! It amazes me how many health issues regular MD's "don't believe in" that are the cause of so much pain and suffering!
Posted 10/9/2010 7:19 AM (GMT -8)
Make sure you get all of the conventional Lyme tests. If they are positive, then you know you have to go down this road that we all have. I have felt horrible for years and years and had a confirmed dx of Lyme at age 16 (after a tick bite at age 12). Yes, I crave sweets, and after a year's worth of antibiotics, I got really sick (pancolitis) and now my gut seems to be permanently screwed up. YOu need to be very careful. If you really have Lyme, then, yes, you need to treat it, but even the best LLMD will tell you that they cannot cure Lyme...it may go away for years, but there are always stories of patients showing back up with symptoms again. So, if it cannot be cured, you want to make sure that you don't end up worse off from the treatment, like me. I never thought I'd be wishing for my old life, because I thought that was horrible. This is worse. The testing sucks (yes, that's a medical term ;) from a doctor). But, if it is positive, it's positive. Things get tough when it is negative.

I just went through the million dollar work-up at a famous clinic trying to prove that whatever is wrong with me is no Lyme. They could diagnoses nothing. I am still so freaking sick that I cannot stand it sometimes. I wish I had something more to offer you than cautionary tales. I do believe in Western medicine, and I do believe in evidence based alternative medicine approaches. Just be careful with what you try and do, because some things, both conventional and alternative, can and will hurt you.

Best of luck.
Posted 10/9/2010 4:03 PM (GMT -8)
Well stated, Doc!
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