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Lyme Disease
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Posted 7/29/2017 2:30 AM (GMT 0)
Hi everyone!

I haven't been officially diagnosed with chronic Lyme but I have been experiencing many, many symptoms since 04/04/13 (age 15). I am seeing a LLMD on August 3.

**

If you could give me any advice for the first steps you WISH you had taken (helpful steps that you DID take) what would they be? Especially lifestyle advice, please! smile

**

It's a long story but I live in a tick-endemic area and was tested by a PCP in October '13 for Lyme and had a titer of about 5. However, I wasn't treated because an Infectious Disease doctor gave me a spinal tap and it was negative.

My symptoms worsened and I was tested again by a different PCP last summer and had a lyme titer of almost 2. She gave me 2 wks of antibiotics and said I was "cured." My fatigue and sleep improved slightly, then worsened and now I'm worse than ever.

Now I today got some Lyme results (titer and PCR for Lyme and co-infections) that I requested from an Urgent Care center and everything was NEGATIVE. Does this mean I don't have Lyme? I'm confused.

My instincts combined with the research I have done point to Lyme, but I sometimes wonder if I'm "crazy".


**


Exercise: yes or no? I've read conflicting things.

Is taking leisurely walks good? I walk for 45-60min a few times a week, trying to do it more often.

Should I stretch? How long?

Is self-massage helpful? I have a lot of muscle spasms, pain...

Should I start trying exercises like push-ups, squats?

I used to be a runner and very athletic and healthy but I've gotten so out of shape I kind of don't know what to prioritize! smile


**

Next up: Am I taking helpful supplements (for general health and for Lyme)?

I take the following supplements:
-Women's One-A-Day
-levothyroxine 25mcg
-magnesium oxide 250-500mg
-lithium orotate 10mg BID
-Klonopin .5-1mg PRN
-Vitamin D3 2000IU (verified deficiency)
-Methyl-B12 5000mcg (verified deficiency)
-Probiotics: TruFlora & Pro-15
-Fish oil 3g

I have been having a lot of issues with sleep so I ordered from Amazon & will soon take:
-400mg ashwagandha BID
-100mg l-theanine
-"Deep Sleep" supplement (my dad swears by it)

**

Should I do a parasite and/or candida cleanse before starting antibiotics?

I've read that antibiotics for Lyme aren't effective if you have parasites and/or candida but I wanted to know what people's experiences are.

**

I am a big lover of herbal tea and also have started to drink lemon water.

Are there any other simple things to try or specific herbal teas without spending a load of $$?

**

Thank you so much! I really have so much confusion about this having been given so many diagnoses so I really look forward to your clarification and guidance. smile

Post Edited (Bex88) : 7/28/2017 9:04:22 PM (GMT-6)

Posted 7/29/2017 3:22 AM (GMT 0)
Welcome Bex and so sorry you have lyme.

I think you will benefit from seeing your LLMD on the 3rd. This doc will be able to tell you if you have lyme because of your list of symptoms.

If you feel like exercising, just do it lightly.

As for parasites or candida, talk with your LLMD. I would not do anything until you talk to him/her.

Good to see you are doing lemon water. That is a great detoxing method.

Take a look at the New To Lyme thread. It has a huge amount of information in there that will be extremely helpful for your doctor visit and ideas of what you can be doing now.

Oh and you aren't crazy. We all felt that way too....
Posted 7/29/2017 3:29 AM (GMT 0)
That was a lot to unpack.

Treating lyme and feeling better doesn't have to be so convoluted.

First things first. Help your body detox and reduce inflammation (symptoms) as much as possible. Detoxing methods are available and a clean diet.

Let's start there. Then you see your LLMD soon.
Posted 7/29/2017 3:40 AM (GMT 0)

Bex88 said...
Hi everyone!

I haven't been officially diagnosed with chronic Lyme but I have been experiencing many, many symptoms since 04/04/13 (age 15). I am seeing a LLMD on August 3.

**

If you could give me any advice for the first steps you WISH you had taken (helpful steps that you DID take) what would they be? Especially lifestyle advice, please! smile

**

It's a long story but I live in a tick-endemic area and was tested by a PCP in October '13 for Lyme and had a titer of about 5. However, I wasn't treated because an Infectious Disease doctor gave me a spinal tap and it was negative.

My symptoms worsened and I was tested again by a different PCP last summer and had a lyme titer of almost 2. She gave me 2 wks of antibiotics and said I was "cured." My fatigue and sleep improved slightly, then worsened and now I'm worse than ever.

Now I today got some Lyme results (titer and PCR for Lyme and co-infections) that I requested from an Urgent Care center and everything was NEGATIVE. Does this mean I don't have Lyme? I'm confused.

My instincts combined with the research I have done point to Lyme, but I sometimes wonder if I'm "crazy".


**

Hi Bex - Welcome!

I've broken your post up to make it easier for me to reply.

Sorry you had to go through a spinal tap - when it is known that procedure isn't reliable for diagnosing Lyme disease.

And two weeks is not enough time to treat a chronic infection..not even close. (As you now know)

The recent negative test results does not mean you don't have Lyme Disease. And you are not crazy!!
Posted 7/29/2017 3:41 AM (GMT 0)
Thanks so much for the perspective, both of you! I think I have developed a sort of distrust over the years (not necessarily that doctors are bad, just that they don't know what they're doing) because I have had so many ineffective and even HARMFUL treatments for various diagnoses. It would probably help me to trust that the LLMD will heal me.

It was a lot to unpack, but really only the TIP of the iceberg, believe it or not; it seems like everywhere I look there's conflicting information and no real consensus and I have so many questions. I also have so much self-doubt and conflicting emotions.

**Is there any other illness like Lyme where the tests offer such little sensitivity? Also, why don't antibiotics kill ALL the Lyme bacteria? How come antibiotics definitively cure all these other bacterial infections (like TB, pneumonia...) but not LYME?

I'll keep drinking lemon water in the meantime.

Post Edited (Bex88) : 7/28/2017 9:44:30 PM (GMT-6)

Posted 7/29/2017 3:51 AM (GMT 0)

Bex88 said...
Thanks so much for the perspective, both of you! I think I have developed a sort of distrust over the years (not necessarily that doctors are bad, just that they don't know what they're doing) because I have had so many ineffective and even HARMFUL treatments for various diagnoses. It would probably help me to trust that the LLMD will heal me.

It was a lot to unpack, but really only the TIP of the iceberg, believe it or not; it seems like everywhere I look there's conflicting information and no real consensus and I have so many questions. I also have so much self-doubt and conflicting emotions.

**Is there any other illness like Lyme where the tests offer such little sensitivity? Also, why don't antibiotics kill ALL the Lyme bacteria? How come antibiotics definitively cure all these other bacterial infections (like TB, pneumonia...) but not LYME?

I'll keep drinking lemon water in the meantime.

You seem very intelligent and very inquisitive. The nuance answers that you seek, people probably wont be able to provide with justice in a forum platform.

To answer your question a novel on biology, chemistry, bacteria, and evolution would have to be written.

But luckily someone already wrote those books regarding lyme. Stephen Buhner. His books are great and packed full of knowledge.
Posted 7/29/2017 3:58 AM (GMT 0)
Also Bex88,

There's no such thing as "cures" for anything. The colloquial use of the term "cure" is not a real thing.

What you do is you treat, until you are symptom free. That's true with a cold, flu, respiratory infection, or bad bacteria in something you ate that made you sick for 3 days.

It doesn't mean that those microbes or viruses that made you sick is 100% completely eradicated from your body (for viruses it's actually impossible as of now). It is more than likely still there. But not in numbers that are detrimental to your health.

It just much tougher to put Borrelia in remission compared to say, the flu.
Posted 7/29/2017 4:01 AM (GMT 0)

Bex88 said...





Exercise: yes or no? I've read conflicting things.

Is taking leisurely walks good? I walk for 45-60min a few times a week, trying to do it more often.

Should I stretch? How long?

Is self-massage helpful? I have a lot of muscle spasms, pain...

Should I start trying exercises like push-ups, squats?

I used to be a runner and very athletic and healthy but I've gotten so out of shape I kind of don't know what to prioritize! smile


**

Next up: Am I taking helpful supplements (for general health and for Lyme)?

I take the following supplements:
-Women's One-A-Day
-levothyroxine 25mcg
-magnesium oxide 250-500mg
-lithium orotate 10mg BID
-Klonopin .5-1mg PRN
-Vitamin D3 2000IU (verified deficiency)
-Methyl-B12 5000mcg (verified deficiency)
-Probiotics: TruFlora & Pro-15
-Fish oil 3g

I have been having a lot of issues with sleep so I ordered from Amazon & will soon take:
-400mg ashwagandha BID
-100mg l-theanine
-"Deep Sleep" supplement (my dad swears by it)

**

Should I do a parasite and/or candida cleanse before starting antibiotics?

I've read that antibiotics for Lyme aren't effective if you have parasites and/or candida but I wanted to know what people's experiences are.

**

I am a big lover of herbal tea and also have started to drink lemon water.

Are there any other simple things to try or specific herbal teas without spending a load of $$?

**

Thank you so much! I really have so much confusion about this having been given so many diagnoses so I really look forward to your clarification and guidance. smile

Yes, taking leisurely walks is good. Light exercise is a good detox method. Just don't overdo it.
Stretching and massage - also good.

Push-ups and squats - if it fatigues you - then it's too much.

Your supplement list is fine. When you see your LLMD, he/she may suggest other ones to add.

** When drinking lemon water - because it can damage the tooth enamel - rinse your mouth out with clear water after drinking...and don't brush your teeth right away. Also , drinking through a straw helps to bypass the teeth.

Here is a link with more detox ideas...you will want to add a new one in every few days until you are doing multiple methods daily:

www.tiredoflyme.com/detox-methods

You could incorporate a binder (eg. Activated Charcoal ) Just make sure you take it a couple of hours away from everything else...as it will usher everything in your stomach out with it.

My favorite detox is warm epsom salt baths.

Good luck with your LLMD appt. - and please update us after!
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