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Just Diagnosed With Lyme Disease...


Guest LittleMissAllergy

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Guest LittleMissAllergy

I've seen a lot of people around here talk about having lyme, getting better, and then not having food sensitivities anymore. I'm a little overwhelmed right now, so I think I just need to hear from those people.

I was just diagnosed this afternoon, without the blood test. They drew for blood, but as you all probably know...lyme is hard to detect and diagnose.

Basically I've been sick for 2 years; I started addressing heavy metals and bacterial infections and started feeling better (was addressing them through the methylation process/pathway) and then stopped trying to detox. I was feeling a little better, but I was still having to eat the same foods everyday, there's only a handful I'm not sensitive to. I was also still having some GI trouble.

But then I went through a very stressful couple of months, and now for the past two weeks I've felt sicker than I've ever felt before. My spleen is inflamed and very swollen, I have alternating watery stool and hard grey stool (overall not much coming out), severe cramps, really scary shortness of breath, heart palpitations, nausea, weight loss and extreme fatigue.

So my doctor (who practices alternative medicine) thinks it's lyme disease. He told me it comes in waves kind of and I just need to lay low until this passes, then we can address how to treat it (he still has to look at the blood test though). I'm worried though...because first of all, I'm scared of how sick I feel and I don't know how many more days I can do it without any relief...and second of all, I don't think my body can handle antibiotics. I have trouble breathing just sitting here at times.

So I'm just looking for any advice, or stories...or anything at all really. Thank you!!


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dlp252 Apprentice

I just saw your post on the Lyme Disease thread, but thought I'd search out this post too.

Stress (any kind...emotional, physical, good, bad, etc.) can definitely cause problems. My doctor (a lyme literate MD) really, really wants me to avoid stress...he even mentioned he'd like me to find a different job (I work for a law firm, lol). He wants me to make sure I get enough rest, not to overdo anything, to avoid foods and chemicals that I'm sensitive too, etc. If your body is fighting those things, it can't fight the lyme (and the other issues it causes) as efficiently.

In my case the lyme is really affecting my adrenal glands, thyroid and neurotransmitters (things like norepenephrine, epenephrine, melatonin, DHEA, etc.). So that really affects my ability to handle stresses.

I had been feeling so much better lately, but a few weeks ago I got a nasty cold that had been circulating around the office. That really seemed to set me back a step or two...

Do you know what lab they are using for the bloodwork? I was first diagnosed by alternative means, but then had blood testing done which confirmed that.

CarlaB Enthusiast

Like Donna, I saw your other post and thought I'd see what you had to say here. :)

Your air hunger symptom sounds a lot like babesia. It does get scary .... that was a big symptom for me.

I've been in treatment for 15 months. My LLMD is very aggressive and has had me on heavy antibiotics plus natural stuff to build my immune system. His approach is that it's not enough to kill the bugs, you have to also build your body to be able to take care of this stuff itself.

I've also had issues with heavy metals, parasites, babesia, bartonella, bacterial overgrowth in the intestines, thryoid, adrenals, etc.

It's never just one thing with Lyme. Lyme weakens the whole system so everything gets out of whack.

rinne Apprentice

Hi, it sounds like you are on the right track and having alternative health care is critical, IMO, with Lyme.

I have probably done less in regards to treatment than others, in fact I haven't seen anyone for over a year now. I have made steady improvements on my own.

I would recommend the Klinghardt protocol, Rachel has seen someone who works with him. I used it on my own and saw real progress. I am not suggesting you do that, perhaps your health care person is familiar with him or willing to look at his treatment methodolgy.

And yes to need to be stress free, how are your B levels?

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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