Thinking it's Lyme & Thoughts on Lyme Diet

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G-Ju
Regular Member


Date Joined Apr 2018
Total Posts : 50
   Posted 4/13/2018 7:02 PM (GMT -6)   
Hi everyone,

My story is just beginning. I apologize for such a lengthy tale, but I thought I would start with why I believe I have Lyme. I feel very fortunate that I haven't lived this for years. I welcome any/all of your thoughts, ideas and/or suggestions.

My symptoms started last summer.....Shortness of breath, somewhat spacey, left knee stiffness, a pinch in my hip and just not feeling as energetic. I chalked it up to menopausal, but I thought it was kind of weird since I'd been menopausal for almost for 6 years. As fall approached, I started experiencing more symptoms....heart palpitations, anxiety, minor back pain and minor depression. Again....maybe menopause related?

December 2017, I had a varicose vein on my left left taken care of and minor eye lid surgery. Three weeks later, early January 2018. my left leg started with internal vibrations. Head tightness, ear stuffiness, increased hip pain, cracky neck, and the internal vibrations moved up my entire left side. As days passed, random waves of numbness crept in and lasted about an hour each time. The numbness would show up in different spots each time...elbow, upper arm, forearm into thumb, but mostly on the left side.

March 2 - I saw my PCP. She did thorough blood tests and everything looked great. She set me up to see a neurologist. She didn't come right out and say it, but she wants to check for MS.

March 10 - Worst day ever! I ended up at the ER with tightness in my chest, numbness in my arm and high frequency internal vibrations on my left side. My head was tight and I was spacey. They did a chest Xray...nothing wrong. EKG...Looks great Brain Cat Scan....Looks good. Then, the doctor asked if I'd been bitten by a tick. Hell yeah! I live in the woods, pick wild blueberries, garden and I'm a pet owner. Even though I never saw a red ring, I've pulled a two or three attached ticks off over the years. At this point, I thought I had my answer. Wrong! Three Lyme tests and all were negative. I contacted my PCP and she did one more test. out of the 15 bands, 2 were negative, 10 were NonReactive and three IgG were Reactive...41, 58 and 66, but I didn't have 5-10 bands. Lyme symptomatic, reactive bands, but I was still a negative in the eyes of the CDC.

After this, I called some friends with Lyme info and started to educate myself about Lyme. I e-mailed my PCP through the hospital portal and BEGGED her to take a chance and start me on some kind of Lyme meds. I had told her that I had been experiencing symptoms since last summer, but I never thought about them being Lyme symptoms. Then, I thought it might be possible that when my body was recovering from my Vein procedure and eyelid surgery, it may have been the perfect time for those resting Lyme bacteria to move in and do their thing. At this point, she was willing to write me a prescription.

I had read that a diet free of gluten, sugar, dairy and caffeine is the best way to approach Lyme, so I dove right in. After two weeks of a clean diet and meds, and I was feeling MUCH better. I still don't have a Lyme diagnosis, but the meds were helping, and I was able to function much better than I had been.

March 30 - Neurologist appt. Wants me to have an MRI and a spinal tap. Checking for MS. Ugh! This can wait for a while. I'm still 100% convinced I have Lyme Disease.

My Lyme friends also encouraged me to contact a Lyme Literate doctor who is a Naturopathic.

April 9th - I had my first appt with the Naturopathic LL doctor. She thinks I have Lyme. That band 41 can be a tricky one. She gave me an additional prescription of Doxy to get me through another month. She did some blood work, and I did the DNA Connexions urine test. This doctor sometimes uses the IGeneX test, but she likes this test better. It cost me $500 (more than IGeneX), but I don't care. I must get to the end of this. I'm anxiously waiting to hear how my blood work and urine tests come back. She told me that if I have Lyme, I would be 100% cured after 6-12 months.

April 11th - Back to My PCP. I promised her I'd go back to her to let know how the Doxy was working out. I let her know that I was seeing a Naturopathic doctor. I REALLY like my PCP. I know PCP's can fall short with Lyme, but she's really good at other things. smile She handled the news well, and is looking forward toHearing how things go with the Naturopathic doc. She made me believe she didn't think a gluten free diet was a good idea, but she didn't tell me not to go that route. Her concern...What if there's some kind of gluten allergy going on, and I continued with meds? Did the meds make me feel better or the diet? Legitimate concern? I'm good with eating normal because I tend to eat fairly healthy anyway. What to do?

Here's my big question. DIET! Everyone with Lyme seems to be eating Clean. I've poked around to see if others with Lyme have eaten a normal healthy diet that limits sugars. I can't find anything out there. I understand that Lyme bacteria thrives on sugar and gluten, but is it possible to make a full recovery by eating healthy and not eating Clean?

Thank you for taking the time to read my story and respond.
turn

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/14/2018 1:27 AM (GMT -6)   
regarding the diet.

Besides this forum, I know a few people in my geographical location that have their lyme in remission.

Here's two examples:

One lady changed her diet completely while treating and still eats that way.

Another one didn't change it at all.

The one who changed her diet treated for about 2 1/2 years....and has been well for 2-3 years (can't remember exactly)

The one who didn't change her diet treated for months, not years (approx. 6 months I think) - she didn't have lyme symptoms very long before treatment started (months, not years)...
She has been in remission for about 3 1/2 years.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 4/14/2018 5:57 AM (GMT -6)   
Sorry you're dealing with all this G-Ju.

Love the examples Girle - I have a bunch of 'drank and smoked and lived into their eighties' in my family lol.

I think there's so much that we don't really understand about nutrition, recommendations are always changing and there's definitely a personal element; I think a different diet is going to work for each person so you have to decide what is right for you. Then you have to factor in quality of life too - we don't know how long we'll be on this healing journey.

I experimented a lot with my diet when I was first diagnosed trying to see if there were specific things I should avoid and to see what works best for me. The AIP diet was helpful for me to identify possible inflammation triggers that I might not have considered. Then I settled down to what works best for me. My diet definitely falls into the healthy but not clean category fwiw smile Then again, I'm still treating after 8 months or so. ;-)
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Jasperilla
Regular Member


Date Joined Jan 2015
Total Posts : 229
   Posted 4/14/2018 9:40 AM (GMT -6)   
I think diet is so important with these infections (both treating and preventing), but I also think that what works for some won't necessarily work for others.

With that said, I personally eliminated the most inflammatory foods soon after becoming ill, and noticed a huge improvement in the way I felt shortly thereafter. I've also found that I can indulge in those foods occasionally without too much trouble. But in general, I think it's important to maintain my progress that I'm eating clean overall. For me, that means a primarily paleo diet, eliminating gluten, dairy, corn, soy, refined sugar, inflammatory and industrial oils (canola, safflower, peanut, sunflower, cottonseed, etc.). I eat rice occasionally, but don't eat a huge amount of it (as many GF people do) because of the high amounts of arsenic in it. I also avoid most processed foods.

You'll have to experiment with what helps you, how strictly you need to adhere to it, etc.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5095
   Posted 4/14/2018 10:58 AM (GMT -6)   
"You'll have to experiment with what helps you, how strictly you need to adhere to it, etc."

- Yes, diet is a self guided experimental journey. You don't have to dive in the deep end without testing the waters first. If you dive deep, its endless.

If you eliminate every popular "said" offender, you wont be eating much. Eliminating any found major offenders and processed foods can do wonders though. I eat 90% paleo, was pretty close to 100% for three months.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 231
   Posted 4/14/2018 11:01 AM (GMT -6)   
Shortness of breath and spaciness makes me think of Babesia, and the neurological symptoms between Lyme and Bartonella can overlap. Testing is a nice to have as confirmation, but you should rely on symptoms, not test results, to decide what needs to be treated. Some doctors refer to all tick-borne diseases as Lyme, other terms are MSIDS (multiple systemic infectious disease syndrome), and Lyme Complex.

The diet is less important in how it directly affects Lyme than how your body reacts to foods. Lyme causes a lot of inflammation, so foods that you could previously tolerate will put stress on your body from even mild additional inflammation. Sugars feed yeast, and antibiotics cause yeast overgrowth inside and outside by killing off beneficial bacteria. Another issue managed through diet is leaky gut, where the inflamed intestine leaks food and bacteria directly into the bloodstream.

Dr. Rawls gives a good introduction on holistic treatment.

Post Edited (acarined) : 4/14/2018 10:04:02 AM (GMT-6)


G-Ju
Regular Member


Date Joined Apr 2018
Total Posts : 50
   Posted 4/15/2018 7:24 AM (GMT -6)   
Thank you, everyone, for your responses.

I still don't have my results back, but I'm waiting patiently.

After two weeks of eating clean, I lost 6 pounds. I'm 5'9", and my current weight is 152. I don't really want to lose much more weight, which is another concern about continuing with clean eating.

The last few days, I've been adding some of my normal foods back in to my diet, and I haven't experienced any adverse effects. Pheew! In fact, my internal vibrations seem to have reduced. I've been at a low-minimal vibration frequency, the last couple of days. I've labeled my vibrations on a 1-3 scale, with 3 being the frequency that made me go to the hospital. A three made it feel like the building beneath my feet was shaking. So, this reduction is kind of crazy...a good crazy. I don't really think the reduction of vibration has to do with diet. My guess is that the Doxy is helping, and my food choices probably won't slow the process down. I will continue to monitor the effects.

Again, thank you for your kind words and sharing of Lyme knowledge. smile

MooseSafari
Regular Member


Date Joined Jan 2018
Total Posts : 78
   Posted 4/15/2018 11:00 AM (GMT -6)   
Hi, my illness got dramatically better too when changing diet. And, frankly, it will improve your overall health anyway so why not do it. It might seems like a drag initially and there is definitely a hurdle to overcome, but then when you have adapted your mind and body (and refrigerator) to the new healthier food it will be just joyful keeping up the healthy diet, the previous craving for sugar, processed food and whatnot will have changed completely into disgust. The healthy food will actually taste better than any sugar-ingredient cake or food previously did, and you will notice a big difference.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/15/2018 2:12 PM (GMT -6)   
Diet changes didn’t make a difference for me.

I am currently GF but occasionally when I do eat gluten - there’s no difference in how I feel.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5095
   Posted 4/15/2018 2:56 PM (GMT -6)   
"After two weeks of eating clean, I lost 6 pounds. I'm 5'9", and my current weight is 152. I don't really want to lose much more weight, which is another concern about continuing with clean eating."

When were sick and dont like moving, weight loss can happen. I lost weight at first, my diet wasnt terrible, but not the best either. But I was eating food my body didnt agree with. Can you exercise at all? some can / some cant. Three summers ago (abx then) I could not exercise without hurting or even further injuring hip muscles.

The opposite can happen too, once your better, or if you had leaky gut then changed to a better healing and nutritious diet, and then exercised. I gained 10# while lowering body fat. This is two years after abx though.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

G-Ju
Regular Member


Date Joined Apr 2018
Total Posts : 50
   Posted 4/26/2018 9:31 PM (GMT -6)   
astroman said...
"Can you exercise at all? some can / some cant. Three summers ago (abx then) I could not exercise without hurting or even further injuring hip muscles.



The last week or so, I started to feel like I have the energy to get some exercise. I'm back doing yoga again, but I'm careful not to irritate my hurting hip. On good HIP days, I garden or walk on the treadmill. Hip pain keeps me from running. One day, I hope to be able to run again.

After two weeks on a gluten, sugar, dairy and caffeine free diet, I decided to go back to my normal (healthy) diet, but I've cut back on the things I listed above. Honestly, I was going on vacation, and I thought I would experiment, so I wouldn't be miserable every time we ate out. The food change didn't bother me at all, that I could tell. Now that I'm home, it's much easier to watch what I eat. I don't feel like my food choices are causing any problems.

At t his point, I think I'm going to continue with a healthy diet (my normal), and I'll watch my intake of inflammatory foods. As I continue my treatment, I'll adjust my diet as needed. smile

Thank you for your wonderful comments, ideas and suggestions.

Noah2112
Regular Member


Date Joined Dec 2017
Total Posts : 127
   Posted 4/26/2018 9:52 PM (GMT -6)   
Just want to throw out there that I'm in a similar situation as you, OP. My symptoms started late may 2017, and I've been treating since January. We can get back to full health together! I've also been experimenting with my diet, but I haven't noticed that I feel any different no matter what I eat... in fact it hasn't changed much at all in the past month or two. I guess I'm kinda lucky, cause my level of health still allows me to live a normal life as long as I limit myself to light activity, but I hope to get back to recovering soon.
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