Latest info from conference..

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pismo10
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Date Joined Nov 2016
Total Posts : 30
   Posted 12/5/2017 2:03 PM (GMT -7)   
FWIW, Went to the latest presentation at Kripalu last weekend. Wanted to pass on some things I learned. Maybe some ideas to bring up with your doc..

Testing is very important. Reason for continued symptoms after treatment is that there is often something else going on, like a coinfection, heavy metal issue, hormonal, adrenal issue, allergies, mold, deficiencies, etc. Test for many things and see what oddities pop up and treat.

Lots of stories of people who finally found a last issue or changed treatment and then eventually had good results after much frustration.

If a treatment has done nothing by one month or plateaued with no further improvement, change to something else.

If no herx or feeling better from a treatment, move on. Feel better or worse or move on if no effect after starting a new treatment.

Herx treatments mentioned were liposomal glutathione, NAC, ALA, folic acid, alka seltzer gold.

Think three Is, Infection, Immune dysfunction, Inflammation.

Anti-inflammatories include curcumin, green tea/EGCG, resveratrol, LDN, increase Omega 3, decrease omega 6 oils, Zn, Mg, Cu, sleep, exercise, broccoli extract sulforaphane, Med diet.

For Lyme, multiple intracellular drugs predominant is the way treatment is heading. Also parasite drugs.

Treat the multiple forms of Lyme, cell wall and persisters. Bactrim, pza, dapsone, plaquenil were all mentioned as persister drugs.

39 is the most specific Lyme band.

Low MSH can indicate lyme infection.

VEGF is a good marker for Bart. Foot sole pain, think Bart. Stria think Bart.

Malaria type symptoms present in Babesia. Severe sweats, fevers, air hunger. Also an enlarged spleen.

Babs tests, FISH and PCR are best.

There is a salivary cortisol test to check for adrenal function.

Deficiencies in Mg, Zn, Cu, I, Vit B, D make recovery more difficult.

Oregano oil and Fluconazole for candida issues.

Increased IgE indicates parasites.

Most Mg is intracellular so the RBC Mg test is most useful for Mg levels.

Biofilms – think Lauracidin, biocidin, serrapeptase, stevia.

If you work with Rabbits and are sick, think tularemia(rare).

Mold toxins can inhibit post pituitary so low MSH, ADH.

If you go on a trip for a weekend and feel much better, think mold.

In lyme, Pneumo vaccine is ok, flu and shingles might cause herx.

Prednisone is a no-no. Hydrocortisone ok for adrenal replenish

Theralac is a good probiotic.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 202
   Posted 12/5/2017 2:24 PM (GMT -7)   
Thank you for sharing! I was scheduled to go but cancelled when we decided to take the whole family to the JC clinic in DC in November.

Hope you enjoyed the conference and the food, too!

Warmly -

Peppermint Tea

Rikky1
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Date Joined Jun 2015
Total Posts : 2597
   Posted 12/5/2017 2:48 PM (GMT -7)   
thanks so much for posting. to be honest a little disappointing i expected more new information but practically all of it is already known by pedestrians like me ;o)

i also completely disagree with a few statements like 'testing is very important'. it sure isn't for lyme and co-infections since the results are so highly inaccurate.

also if something doesn't 'work' in one month move on. this is exactly what my original LLMD did and i got literally nowhere. the reason is these are slow growing organisms so you need more than a month to gauge anything. Dr. J in DC one of the top guys in this field would also strongly disagree with this statement.

sure you need to make sure you're hitting whatever it is but it's really more about consistency and persistence. i think doing it the month at a time approach will result in too many folks not treating infections long enough to eradicate them then they'll just pop up later on and the cycle starts all over again.

just my thoughts.

goshawk
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Date Joined Sep 2016
Total Posts : 1342
   Posted 12/5/2017 2:48 PM (GMT -7)   
Thanks so much!!!

Lapis_29
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Date Joined Sep 2017
Total Posts : 523
   Posted 12/5/2017 4:24 PM (GMT -7)   
thank you

k07
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Date Joined Sep 2015
Total Posts : 2197
   Posted 12/5/2017 4:48 PM (GMT -7)   
Ok, so this must be my doc. He’s big on switching up after a month if you notice no improvement. I have to say I do agree. He usually doesn’t change things drastically just tweaks. I think that is probably an important missing piece of info. Drastic changes are more like 3 or more months if no results. People waste way too much time on protocols that don’t work. And for some time is of the essence. If I’m going to destroy my gut flora I don’t want it to be for naught.

I’m surprised he mentioned the adh hormone. I recently tested low but not by him.

I think if you’ve treated for years testing is important for things that testing is reliable for. Knowledge is power and if a test shows something is off then hallelujah I don’t have to play the lyme guessing game.

Thanks for sharing. Always good to read what comes out of conferences even if most is not new.

Post Edited (k07) : 12/5/2017 4:55:33 PM (GMT-7)


Girlie
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Date Joined May 2014
Total Posts : 27971
   Posted 12/5/2017 5:36 PM (GMT -7)   
Well it certainly shows the differing opinions of LLMD's.

The change in protocol after one month of plateauing is something many LLMD's don't follow.

Thanks for posting!
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

pismo10
Regular Member


Date Joined Nov 2016
Total Posts : 30
   Posted 12/6/2017 1:49 PM (GMT -7)   
The idea was - No change, either better or worse, try something new fairly quickly, like a month. Plateau could take much longer, again, change or try a new regimen of some kind.

Rikky1
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Date Joined Jun 2015
Total Posts : 2597
   Posted 12/6/2017 2:23 PM (GMT -7)   
i know quite a few people who had no response to a protocol until month 3,4 even 6. that's my point of persistence but yes makes perfect sense to tweak something if you don't feel anything. really depends on the LLMD and his approach to dealing with these slow growing organisms.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27971
   Posted 12/6/2017 5:09 PM (GMT -7)   
"If you go on a trip for a weekend and feel much better, think mold."

Not necessarily.

When we go to a place in the summer where it's sunny and hot, I feel better because I do better in the warmth.
And, I am generally relaxed.

So, in my case it isn't because my home has mold.
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 12/7/2017 6:43 AM (GMT -7)   
Girlie - Have you tested your home or done any of the Shoemaker lab tests for mold?

Our house checked out fine (ERMI) but I know our cottage that we spend summers/holidays is not (water damaged, roof leak, visible mold). I've also read exposure can be from cars. It is all so very confusing. I have lab abnormalities that point to mold. Time will tell. I see functional doc that ordered tests next week. I don't want to leave any stone unturned.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27971
   Posted 12/7/2017 10:54 AM (GMT -7)   
k07 said...
Girlie - Have you tested your home or done any of the Shoemaker lab tests for mold?

Our house checked out fine (ERMI) but I know our cottage that we spend summers/holidays is not (water damaged, roof leak, visible mold). I've also read exposure can be from cars. It is all so very confusing. I have lab abnormalities that point to mold. Time will tell. I see functional doc that ordered tests next week. I don't want to leave any stone unturned.


No, i haven't. (not tested our home or myself)

No visible mold...none even in the bathrooms.

From the Shoemaker website - symptoms:

Fatigue ♦Weakness ♦Aches ♦Muscle Cramps ♦Unusual Pain ♦Ice Pick Pain ♦Headache ♦Light Sensitivity ♦Red Eyes ♦Blurred Vision ♦Tearing ♦Sinus Problems ♦Cough ♦Shortness of Breath ♦Abdominal Pain ♦Diarrhea ♦Joint Pain ♦Morning Stiffness ♦Memory Issues ♦Focus/Concentration Issues ♦Word Recollection Issues ♦Decreased Learning of New Knowledge ♦Confusion ♦Disorientation ♦Skin Sensitivity ♦Mood Swings ♦Appetite Swings ♦Sweats (especially night sweats) ♦Temperature Regulation or Dysregulation Problems ♦Excessive Thirst ♦Increased Urination ♦Static Shocks ♦Numbness ♦Tingling ♦Vertigo ♦Metallic Taste ♦Tremors


So of the above - symptoms I currently have:

minor joint pain - sometimes, minor sweats (almost gone now), temperature dysregulation maybe?,


I guess I could do the VCS test again. I know when I did it a few years ago...it showed something.
But my LLND didn't think the VCS test was a good test...so I just dropped it.
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 12/7/2017 12:44 PM (GMT -7)   
I passed the vcs test in dr office but failed at home. Computer resolution, lighting, distance from monitor are all so variable. I have about 17 things on that list. Some come and go. But they all overlap with lyme.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27971
   Posted 12/7/2017 12:50 PM (GMT -7)   
k07 said...
I passed the vcs test in dr office but failed at home. Computer resolution, lighting, distance from monitor are all so variable. I have about 17 things on that list. Some come and go. But they all overlap with lyme.


You had 17 things on the list...or still have?


See, I don't have that many. That in addition to not having visible mold in our home.
Our home is very dry in fact. No moisture on windowsills...etc.

I can't see shelling out $$$ to go down that possible rabbit hole.

I have mercury amalgams...I think that would be more of a priority.

Although - I haven't gotten rid of all symptoms - left with under 10 - with maybe 4 that are holding me back from feeling quite good. (head pressure, POTS, shivering, nerve pain - back, left arm)
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

Post Edited (Girlie) : 12/7/2017 6:50:32 PM (GMT-7)


k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 12/7/2017 1:48 PM (GMT -7)   
Fatigue- Off/on - should say likely related to trouble sleeping
Weakness - hands, left leg
Aches - ribs, lower back, jaw (tight/sore)
Muscle Cramps - biceps (periods of flare up)
Headache - call them eye headaches - but also get migraines if neck cracks
Light Sensitivity - yes
Blurred Vision - days where i have to squint to see stuff and others fine
Shortness of Breath - with minimal activity
Joint Pain - fingers/hip/knees
Morning Stiffness - yes
Memory Issues
Focus/Concentration Issues
Word Recollection Issues
Decreased Learning of New Knowledge
Sweats (especially night sweats) - occasionally
Temperature Regulation or Dysregulation Problems
Excessive Thirst
Increased Urination
Static Shocks
Numbness
Tingling (more buzzing/vibration)
Tremors - sometimes in fingers

Tinnitus and fast heart rate are not on here but they are also on my top 10 symptom list. None of the above are debilitating - they just all came around the same time. And we bought the cottage around the same timeframe as I had the “summer flu” so it could be either lyme or mold.

Post Edited (k07) : 12/7/2017 1:58:09 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27971
   Posted 12/7/2017 2:00 PM (GMT -7)   
K07 - are those symptoms you had...or still have?

I thought you were 80% better?
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 12/7/2017 2:42 PM (GMT -7)   
I am better. Most come and go but I really don’t feel horrible. I have a lot of symptoms but they are mild and none of it is really painful. The issues I want resolved are the frequency, numbness/buzzing, heart stuff, tinnitus. I think most of the other symptoms are just off shoots of a few main problems. For example, peeing all the time makes me dehydrated, low bp/increase heart rate, static, thirsty, possibly muscle cramping. Maybe fixing my VIP level will correct shortness of breath, sleep and inflammation. This is all wishful thinking.

I’d say I bounce around from 75-80%. I really only had 2 months of very bad symptoms in 2015 at onset. I acheived a good deal of recovery with no treatment (thought it was ms so did wahls and vitamins/minerals). Most of my symptoms did not disappear but just lessened by a large degree. My case seems strange.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27971
   Posted 12/7/2017 6:52 PM (GMT -7)   
k07 said...
I am better. Most come and go but I really don’t feel horrible. I have a lot of symptoms but they are mild and none of it is really painful. The issues I want resolved are the frequency, numbness/buzzing, heart stuff, tinnitus. I think most of the other symptoms are just off shoots of a few main problems. For example, peeing all the time makes me dehydrated, low bp/increase heart rate, static, thirsty, possibly muscle cramping. Maybe fixing my VIP level will correct shortness of breath, sleep and inflammation. This is all wishful thinking.

I’d say I bounce around from 75-80%. I really only had 2 months of very bad symptoms in 2015 at onset. I acheived a good deal of recovery with no treatment (thought it was ms so did wahls and vitamins/minerals). Most of my symptoms did not disappear but just lessened by a large degree. My case seems strange.


okay - so nothing debilitating.

Is your tinnitus the ringing...or the pulsatile (which i have - well it's 95% gone now)?

Did you treat for Babesia?
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 12/7/2017 7:12 PM (GMT -7)   
I had pulsatile in my 20’s (makes me wonder...) This is a low hum - constant. I get occasional ring but lasts for maybe 5-10 sec, maybe 1-2 times a day.

I tried malarone for few months and CSA (just 1 bottle). May throw in CSA again and see if i get a response. I’m pretty sure it’s not an issue but ya never know for sure!
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