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Your top 5 tips from your last LLMDs appointment thread

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Lyme Disease
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Alxander
Regular Member
Joined : Jun 2018
Posts : 292
Posted 8/8/2018 9:01 PM (GMT -7)
Hello all,

We pay lots of money to see our LLMD, and since their knowledge is valuable, I thought we should share some tips that comes directly from the mouth of those specialists.
I thought that making a thread with easy to read / useful / debatable new tips would be beneficial for everyone.

So for me: my lasted appointment (for girlfriend) was last Monday (august 2018).
Here's a couple interesting tips, mentioned by LLMD Dr. M. in Plattsburgh:

1- Organic Bacon without sugar in it is an alright source of FAT for the keto/paleo diet

2- 1 cup of coffee a day is okay OR 1 cup of green tea a day is good.

3- Clay supplement have to be spaced by 3 hours from medicine. Food is possibly not such a big deal. Aim for 1-2 hours between clay and food.

4- For most: Full eggs and eggs white are NOT banned, and should actually be eaten regularly for their beneficial aspect on the brain that outweigh the allergen risk.

5- Despite some contradictory studies about Plaquenil for cystic form of borrelia, Dr. H. still uses it in his protocol.

Yep... we had a lot of food questions! ;-)
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opugirl
Forum Moderator
Joined : Nov 2012
Posts : 3922
Posted 8/9/2018 6:41 AM (GMT -7)
Thanks for posting, love this thread!
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goshawk
Veteran Member
Joined : Sep 2016
Posts : 2653
Posted 8/9/2018 2:10 PM (GMT -7)
Thanks, great idea!!!
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MA10
Veteran Member
Joined : Oct 2012
Posts : 639
Posted 8/9/2018 2:31 PM (GMT -7)
I wish I had 5 things to take away from my last LLMD visit. It wasn't a very productive visit. But I look forward to seeing what everybody else's says.
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Donjr
Regular Member
Joined : Apr 2018
Posts : 434
Posted 8/9/2018 6:41 PM (GMT -7)
1. Stay on the abx if it is helping till you plateau then move to next one, on list.
2. Hypercoagulation test and thin blood to feel better 90 percent of lymies have it and the fibrin clogs the capillaries and bacteria hides there and nothing can kill them there.
3. Get the vitamin d level to 80 and maintain it there. You will feel better.
4. Address hormones like hypothyroid most lymies t have it it is clinical diagnoses not blood based on tempature, nails, knuckles.
5. No proof pulsing kills more bacterial in fact the different bacteria all have different days they breed so you will miss killing them which means you have to take abx longer. Can pulse if I want but advised against it.
6. When seeing dr in states that say no lyme exist call it borreliosis not lyme

Post Edited (Donjr) : 8/9/2018 7:46:14 PM (GMT-6)

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Alxander
Regular Member
Joined : Jun 2018
Posts : 292
Posted 8/9/2018 6:49 PM (GMT -7)
Good stuff Donjr, out of curiosity(not that it changes anything), could we have a hint of wich llmd told you thise valuble info? Just in case we sonetimes get conflicting tips, so we can compare different school of thought smile
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sierraDon
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Joined : Aug 2016
Posts : 569
Posted 8/10/2018 5:01 AM (GMT -7)
Unfortunately each LLMD has their own tips, often contradictory to each other...would be great if they were on the same page.

Note, i have been drinking this green tea its pretty good and has some stevia in it. they have it my local store for only a $1 a can too.

https://steaz.com/products/zero-calorie-all-natural-iced-green-tea/
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Alxander
Regular Member
Joined : Jun 2018
Posts : 292
Posted 8/24/2018 8:01 AM (GMT -7)
Went to my first LLND appointment yesterday, I left there with mixed feeling.
Still, there was a few interesting things mentionned by the LLND, some debatable, some not.
Here's my top 5 tips/find:

1- You should not eat the same food every day because your body might grow an intolerence to it.
This might be obvious for some, but for me, since I got the green light for eggs, I started my old habbit of eating 4-5 whole eggs every morning. The LLND told me to instead, eat them every other day.

2- The best time to take a probiotic when on antibiotics, is right before bed.
Charcoal and probiotics do NOT bind. By taking the probiotics before bed, you allow your body 8 hours to resplenish some flora.

3- When you have had lyme symptoms for more than 2 months, you are a chronic sufferer.
Therefore I am.
This was a hard one for me to swallow despite me seeing it coming. I've been infected back in June, but it took me 1 month to start a real protocole other than the doxy 200mg BID. I've always kept the hope of being able to kick it out of my system since I was early on the ball... but I guess it won't happen.

4- Nightshades vegetables should ONLY be reintroduced if you no longer have any joint pain.
When it's the case, re-introduce a new one every 3 days (several portions during that day). See if theres any worsening of the symptoms. If not, you are clear.

5- Tap water is apparently the devil. So either buy water in glass bottle, have a water filter system under your sink, or have a Brita to filter the water.
One question that rise with the Brita that I should have asked: That countainer is made of plastic... dosen't it toxify the water?
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44340
Posted 8/24/2018 11:02 AM (GMT -7)

sierraDon said...
Unfortunately each LLMD has their own tips, often contradictory to each other...would be great if they were on the same page.

yes...we're going to have contradictory statements on here for sure.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44340
Posted 8/24/2018 11:07 AM (GMT -7)
My last appt.:


1. Babesia is the 'driver' and needs to be irradicated in order to treat the other infections adequately.

2. Pulsing the antibiotics/anti-parasitics allows the immune system to do some of the work on the off-days.

3. Taking care of pain is beneficial to the immune system.

(I already knew the above from him prior to my appt....)
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Alxander
Regular Member
Joined : Jun 2018
Posts : 292
Posted 8/24/2018 12:05 PM (GMT -7)
Hi Girlie, hope your new treatment is going alright! I'm excited that you are on the new Dapsone abx smile

Concerning 3) and pain...
Could you explain me a bit more what you mean?

I take it that it is good for your immune system if you find way to reduce the pain?
My LLMD did put me on Low Dose Naltrexone and at the time I was kind of agaisnt it. I felt that it would hide my pain and I wouldnt know if my relief is actually coming from the plaster (naltrexone) or a "real" improvement.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44340
Posted 8/24/2018 12:54 PM (GMT -7)

Alxander said...
Hi Girlie, hope your new treatment is going alright! I'm excited that you are on the new Dapsone abx smile

Concerning 3) and pain...
Could you explain me a bit more what you mean?

I take it that it is good for your immune system if you find way to reduce the pain?
My LLMD did put me on Low Dose Naltrexone and at the time I was kind of agaisnt it. I felt that it would hide my pain and I wouldnt know if my relief is actually coming from the plaster (naltrexone) or a "real" improvement.

Thanks, my treatment is going...but it's hitting me hard.

He has patients coming in and saying they don't need the pain meds...they can handle it. But, he says "But your immune system can't"
- meaning that being in constant pain can/does affect the immune system.

I haven't listened...still not on the pain meds he prescribed. I'm not against it for the same reason as you - I don't mind if it hides the pain...but I just don't want to take one more med than I need to. I always go searching on the internet for side effects/risks...and the pain meds (lyrica/gabapentin) do have some.

I did break down and try Gabapentin in February...but it didn't help. I was willing to go only so high in dosage. Now I'm supposed to try Lyrica. But, Im holding off because I seemed to have a 'shift' in symptoms the past couple weeks...for the better....so we'll see what happens.
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Alxander
Regular Member
Joined : Jun 2018
Posts : 292
Posted 8/24/2018 1:15 PM (GMT -7)
I understand. I suppose it makes sense when you consoder that pain increase cortisol level.
Fair enough! smile

Hold on to that treatment, sending you positive vibes about those changes you’re noticing. smile
I’m on a Quebec support group and many people were discussing lyrika lately. Pretty much only heard bad comments. Not that it was dangerous our made permanent damange, no. But secondary effect like major mood swing and such. Just thought I’d share what I heard. Can’t speak from experience.
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Donjr
Regular Member
Joined : Apr 2018
Posts : 434
Posted 8/24/2018 6:52 PM (GMT -7)
Llmd is in mo initials are cc
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borrelioburgdorferii
Veteran Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 631
Posted 8/25/2018 5:40 AM (GMT -7)

Donjr said...
1. Stay on the abx if it is helping till you plateau then move to next one, on list.
2. Hypercoagulation test and thin blood to feel better 90 percent of lymies have it and the fibrin clogs the capillaries and bacteria hides there and nothing can kill them there.
3. Get the vitamin d level to 80 and maintain it there. You will feel better.
4. Address hormones like hypothyroid most lymies t have it it is clinical diagnoses not blood based on tempature, nails, knuckles.
5. No proof pulsing kills more bacterial in fact the different bacteria all have different days they breed so you will miss killing them which means you have to take abx longer. Can pulse if I want but advised against it.
6. When seeing dr in states that say no lyme exist call it borreliosis not lyme

thanks Donjr!

I like this thread too, as I haven't been able to afford an LLMD yet, but have consulted some of the greatest ones via the Internet, thru literature and YouTube webinars... Dr. MR in Seattle does a great webinar on YouTube and posts them publicly (or to subscribers?).. so I get a lot of info from there..

top 5 tips? hmmm I can't think of any, but my memory has holes in it anyway...

speaking of...I like that tip about saying "borreliosis" instead of the dreaded "L" word. I'll probably use that one to get more abx from my practically homeless level healthcare "provider"...

I'm going to insist on a hypercoagulation test and emphasize "borrel-ee-O-sis" instead of mentioning the sour-green-fruity-joke-misnomer-sound-alike....

-borrelio
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