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Another Seeing my LLMD next week, am I forgetting something? thread

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Posted 9/17/2018 4:55 PM (GMT -5)
Hello all,
So many of you are so helpful people and have so much experience with Lyme and co here, I could use the advice of some veterans here. I just want to know if I'm missing something in my protocole, or if I should make special request to my LLMD.

Short Recap for my case:
-Got bit June 14 2018
-Started Doxy 200 BID the week after
-Started LLMD Protocole July 14.

My protocole:
1. Nystatin capsules 1,000,000u 3X a day
2. Bactrim DS 2x a day
3. Hydroxychloroquine 200mg 2xday
4. Clarithromycin 500mg 2xday
5. Doxycycline 200mg 2xday
6. Naltrexone 1.5mg 1xday
7. Malarone 250mg – 100mg 2xday

Supplement List:
1. Probiotic 1 daily (alternate between regular and boulardii)
2. Boluoke 2 capsules 2x day (total of 4 a day)
3. Multivitamin Naturello for Men 2 caps 1x/day
4. Vit. D3 1000iu/2ml 6 drops daily
5. Vitamin K every other day
6. Activated Charcoal 1x day
7. Detox2 Powder 1x day
8. Byron White Bab2 2x day, 25 drops 2x day
9. Byron White Cognease detox, 20 drops, 2xday
10. Organic Cordyceps Extract 2x day
11. Vitamin C that contain some calcium

After 4 months of treatment, my symptoms have shifted, but I wouldn't say my overall well being has increased by more than a mere 5%.

My top 5 symptoms used to be:
1- Fatigue (when waking up, all day)
2- Joint Pain
3- Anxiety/Brain Fog/Feeling like a zombie
4- Blurry Vision
5- Jaw PAin

My NEW top 5 symptoms
1- Fatigue (not when waking up anymore, still sets in heavily during day)
2- Foot / Toes Pain
3- Jaw Pain
4- LOTS of calves twiches (sometimes in forearm too)
5- Headache

In short, mentally it's going much better. But I'm not that sure it's because of the treatment. I'm the kind of person that get really really stressed over diseases, and my initial reaction was probably blown out of proportion, and I definitely had my biggest herx on DOXY which gave me despair feeling.

My question for the LLMD:
1. I read that Dr Horrowitz mentioned Plaquenil alone was not enough for persister form of borellia. Would it make sense to use the trio daptomycin/doxycycline/cefuroxime to target persisters?
2. The fact that my infection is recent (less than 4 months), is it normal that improvement take so long, and those new symptoms keep getting worse despite treatment?
3. Could my weak response to treatment be caused by insufficient dosage vs my weight?
4. Based on symptoms, Bartonella looks like a domiant co-infection. Should we hit it harder?
5. I’ve been taking Boluoke 4 capsules a day. Should we rotate biolfilm buster? If so, which one would be most effective? Stevia, combination of them?
6. Should we add something that cross de blood/brain barrier like minocycline?


Should I be adding anything?
I know this has been a long post, thank you so much for reading it.
-Alex

Post Edited (Alxander) : 9/17/2018 3:59:29 PM (GMT-6)

Posted 9/17/2018 5:08 PM (GMT -5)
Just pasted part of your post so I could respond:

"After 4 months of treatment, my symptoms have shifted, but I wouldn't say my overall well being has increased by more than a mere 5%.

My top 5 symptoms used to be:
1- Fatigue (when waking up, all day)
2- Joint Pain
3- Anxiety/Brain Fog/Feeling like a zombie
4- Blurry Vision
5- Jaw PAin

My NEW top 5 symptoms
1- Fatigue (not when waking up anymore, still sets in heavily during day)
2- Foot / Toes Pain
3- Jaw Pain
4- LOTS of calves twiches (sometimes in forearm too)
5- Headache

In short, mentally it's going much better. But I'm not that sure it's because of the treatment. I'm the kind of person that get really really stressed over diseases, and my initial reaction was probably blown out of proportion, and I definitely had my biggest herx on DOXY which gave me despair feeling.

My question for the LLMD:
1. I read that Dr Horrowitz mentioned Plaquenil alone was not enough for persister form of borellia. Would it make sense to use the trio daptomycin/doxycycline/cefuroxime to target persisters?
2. The fact that my infection is recent (less than 4 months), is it normal that improvement take so long, and those new symptoms keep getting worse despite treatment?
3. Could my weak response to treatment be caused by insufficient dosage vs my weight?
4. Based on symptoms, Bartonella looks like a domiant co-infection. Should we hit it harder?
5. I’ve been taking Boluoke 4 capsules a day. Should we rotate biolfilm buster? If so, which one would be most effective? Stevia, combination of them?
6. Should we add something that cross de blood/brain barrier like minocycline?"

———————————————————————————

Your new symptoms of foot pain and twitching could be bartonella coming to the forefront.
I see you're treating babesia/lyme.

You may want to switch over to Rifampin or Rifabutin for bartonella after you've done a long enough babesia treatment.
Do you know if that is the LLMD's plans? I think I'd do that more conservative treatment before resorting to the persister protocol. (just my opinion)

minocycline is a good antibiotic - paired with Rifampin or Rifabutin will target Bartonella.

Bactrim and clarithromycin isn't always sufficient for bartonella.

Wow - I see you started treatment one week after your tick bite.
So sorry this has turned into a lengthy treatment for you!
Posted 9/17/2018 6:27 PM (GMT -5)

Alxander said...
Hello all,
So many of you are so helpful people and have so much experience with Lyme and co here, I could use the advice of some veterans here. I just want to know if I'm missing something in my protocole, or if I should make special request to my LLMD.

Short Recap for my case:
-Got bit June 14 2018
-Started Doxy 200 BID the week after
-Started LLMD Protocole July 14.

My top 5 symptoms used to be:
1- Fatigue (when waking up, all day)
2- Joint Pain
3- Anxiety/Brain Fog/Feeling like a zombie
4- Blurry Vision
5- Jaw PAin

My NEW top 5 symptoms
1- Fatigue (not when waking up anymore, still sets in heavily during day)
2- Foot / Toes Pain
3- Jaw Pain
4- LOTS of calves twiches (sometimes in forearm too)
5- Headache

In short, mentally it's going much better. But I'm not that sure it's because of the treatment. I'm the kind of person that get really really stressed over diseases, and my initial reaction was probably blown out of proportion, and I definitely had my biggest herx on DOXY which gave me despair feeling.




Should I be adding anything?
I know this has been a long post, thank you so much for reading it.
-Alex


Alex - I am in the same boat. I was infected July 4th. I did 7 weeks of a combination of antibiotics (went on antibiotics ONE DAY after bite) including doxy, bactrim, plaquenil. Also did Artemisinin for 30 days in addition to probiotics, supplements, etc.

I stopped all antibiotics after those 7 weeks bc i I was getting bad oral thrush and my doctor thought my remaining symptoms were pretty limited. Currently, I am just taking supplements and vitamins. Problem is, I still also have daily jaw pain. This leads me to feeling like my whole face/sinuses are swollen/have pressure. I have also started developing random bruises, with no impact. And then last day I had the worst abdominal pain I have ever had in my life. It woke me up at 3am. I almost made my husband take me to the ER before it randomly just subsided.

I am just not sure how to move forward. I don't want to keep paying for an LLMD who will put me on antibiotics that should have been successful but maybe were not. I have been debating starting herbal treatment. Maybe japanese knotwood and cats claw to start?
Posted 9/18/2018 9:08 AM (GMT -5)
Girlie -
Thank you for taking the time to read/reply. You're an angel.

-Persister is a concept that I don't fully grasp yet. I thought that one miss-step I did during my protocole was to be using Doxy alone for a month. In my own personal view of this, I suspected of turning all those spyrochetes into cyst from the solo doxy, hence my logic for persister abx. I'll keep in mind what you mentionned, that it is probably not time yet.
- Very interesting infos about bart and ways to fight it, I'll mention those to my LLMD. Thank you so much smile

On a side subject, regarding me having a hard time getting better....
I've recently been losing a lot of sleep and generating a lot of anxiety at the idea that my old appartment might be prone to MOLD.
It's an old appartment that hasn't had any repair in over 15 years.. and I know for a fact that in the past, I had to remove some spot of mold on wall of my bathroom (it has no fan, so humidy tend to provoke that).
Now I'm wondering if I'm poisonning myself inside my own home and I don't where to start. Should I be calling an expert air analyst to determine if my environment is toxic?

BuckeyeSDH- I totally hear where you're coming from. I see a lot of our options as a gamble as to know if we'll get healthy again. I haven't had any success from LLMD so far, but does it mean in a year time, I couldnt be in remission? Anything is possible.
One thing is sure, we'll never be in remission if we let outselves untreated.
My suggestion if you don't want to deal with LLMD anymore, to at least find a good Naturopath to begin an herbal protocol. smile Wish you all the best in your recovery.
Posted 9/18/2018 10:00 AM (GMT -5)
Maybe add a TindaMax pulse as a cyst buster. But you got a pretty full plate of ABX at the moment. Good that you got to an LLMD as soon as you did.
Posted 9/18/2018 10:08 AM (GMT -5)
Mold can definitely prevent Lyme recovery. Dr Shoemaker has done extensive research on mold, mycotoxins, etc. He recommends ERMI or HERTSMI testing with Mycometrics. They have two types of test kits, one fits on your vacuum and the other includes a dust cloth. I believe the cloth is recommended and the test is around $250.

Post Edited (SoMuchFun) : 9/18/2018 4:44:49 PM (GMT-6)

Posted 9/18/2018 3:51 PM (GMT -5)
Well I'm so freaked out about MOLD that despite my modest budget, I've decided to hire private air analyst to come check my apartment and perform air analysis.
Will cost me 1000$ to have all the results.

I won't find peace of mind until I know if I'm breathing toxicity...
Posted 9/18/2018 4:24 PM (GMT -5)

Alxander said...
Girlie -
Thank you for taking the time to read/reply. You're an angel.

-Persister is a concept that I don't fully grasp yet. I thought that one miss-step I did during my protocole was to be using Doxy alone for a month. In my own personal view of this, I suspected of turning all those spyrochetes into cyst from the solo doxy, hence my logic for persister abx. I'll keep in mind what you mentionned, that it is probably not time yet.
- Very interesting infos about bart and ways to fight it, I'll mention those to my LLMD. Thank you so much smile

On a side subject, regarding me having a hard time getting better....
I've recently been losing a lot of sleep and generating a lot of anxiety at the idea that my old appartment might be prone to MOLD.
It's an old appartment that hasn't had any repair in over 15 years.. and I know for a fact that in the past, I had to remove some spot of mold on wall of my bathroom (it has no fan, so humidy tend to provoke that).
Now I'm wondering if I'm poisonning myself inside my own home and I don't where to start. Should I be calling an expert air analyst to determine if my environment is toxic?

BuckeyeSDH- I totally hear where you're coming from. I see a lot of our options as a gamble as to know if we'll get healthy again. I haven't had any success from LLMD so far, but does it mean in a year time, I couldnt be in remission? Anything is possible.
One thing is sure, we'll never be in remission if we let outselves untreated.
My suggestion if you don't want to deal with LLMD anymore, to at least find a good Naturopath to begin an herbal protocol. smile Wish you all the best in your recovery.

Re: mold. I think you should do the ERMI test....we have knowledgeable members dealing with mold and they can help you choose the right test. I believe the ERMI will test your environment....but not you...lol.
If the ERMI test shows mold...I'm not sure if you need to test yourself...or if you could a) clean up your home...or MOVE and then b) do the mold treatment (even without testing)

Two members that come to mind are: WalkingbyFaith and Hoagie.
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