posted
We have been talking about pyroluria here lately. www.drrandy.org has a good article (just click on article).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks...anyone else here?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lymeparfait
Unregistered
posted
Start here Detox pathway cleared(pyroluria test and or treatment) Gut repair and rebuild good flora (progurt) clear emotional/psychological blocks/forgiveness Clear inherited or acquired disregulations and allergies (Allergie Immune Therapy)
Get ART tested and Igenex tested to find priority for treatment.
Then... Work on the appropriate Co-infections along with parasites, candida/yeast, and heavy metals.
IP: Logged |
posted
anything immunosupressive in a Th1 illness could account for it, vitamin D for example
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
dguy-i'm sorry but i don't really understand. what is Th1 illness? and i thought vit D helped your immune system-not supressed it...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
a Th1 illness is one in which Th1 cells are produced in excess (google it for details)
Lymies need to be very careful about vitamin D. Vitamin D sometimes gives the impression of boosting the immune system since it can help erode the cell walls of infectious agents, and kill them. However since Bb exists in a cell-wall deficient (CWD) form, vitamin D won't help. Furthermore, vitamin D is a form of steroid, and steroids are immunosuppressive.
Fish oil, for example, is extremely high in vitamin D, and that can help people feel better by reducing immune action and thus inflammation. On that basis, using the parlance common on this board, vitamin D is "toxic" to us, and caution is wise.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
My LLMD suspects that something is interfering with my progress. He is retesting me for viruses and metals, particularly mercury.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
dguy-i have heard ppl say vit D is not good for lymies when referring to the marshall protocol.
my llmd does not believe in that.
i don't know which is right
there is a dr. cattell (not sure if sp is exact)-who says low Vit D is the cause of flu and many other problems including ms,als and i think fibro...
i can get more info on that doc if anyone wants it
i think Vit D is one thing we really don't know for sure about.
i have used steroid ear and eye drops-short term prednisone for asthma and cortef without a problem-they were approved by llmd.
so small amts of steroids can be ok sometimes.
there are a lot of things we still don't know about lyme.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Vit D is controversial, but I just choose to go with my gut on this one. Avoiding the sun doesn't make any common or evolutionary sense to me... appropriately, I used to feel very sun-toxic, but in the last few months as I've gotten better, I've been sunbathing for 30 min/day without any problems whatsoever. I actually feel better with exposure.
Posts: 713 | From Los Angeles | Registered: Oct 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, many lymies have one or more low hormones as well and some do better when hormones are added back in...the key with hormones is in physiological dosing probably....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Here are the things I constantly read you have to fix before lyme treatment will be successful. (If there is such a thing). Unfortunately I don't have the money to test for these little less treat them. But for people who do:
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
Liver Protection: Laying the Foundation for Optimal Hepatic Health - By Kathy E. Acquistapace, DC, NHP, CNC
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My LLMD pushes Vitamin D, and he is about to write a paper on it. He thinks it is very beneficial. Even Dr. T of the From Fatigued to Fantastic book has abondoned the Marshall Protocol.
The update is Vitamin D is good.
From what I heard,
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
My LLMD (and myself included) think the answer lies in the absorption of the medications. Quinolones (Cipro, Levaquin) MUST be taken on an empty stomach to maximize absorption. In addition, some LLMD's are thinking Malarone might do something more than Mepron or work in a different manner. Malarone with Fish Oil and one teaspoon oil maximizes aborption. Also, most dosing is incorrect, I am taking 3 malarone am and 3 in the evening.
Posts: 48 | From nj | Registered: Aug 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
How much magnesium is too much?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
Some people get too sick from the response to therapy. The reactions make it impossible to keep going. Another problem for trx failures, in my opinion, is the gut getting messed up. Dysbosis is very hard to correct. Once that happens all bets are off.
As for the "d controversy" -- among d researchers there is no controversy.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
PH Balance. If we don't have it, I think it is a lot harder to fix. We have PH balance to help the cells do their jobs.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
pH = potential of hydrogen.
Hydrogen goes right into our cells, but to get INTO the mitochondria, we need the enzyme, CoQ10 to do this and all enzymes need Mg to be made...somewhere along the line.
ONGOING.
Taking an entire bottle of CoQ10 all at one time, besides being ineffective, won't work.
We need this enzyme ONGOING.
Yes, many of our cells are "hydrogen powered".
Photons split H20 into H+ and OH -. That looks to be a way far infrared is working, but it gets a lot more complex that just that.
posted
This thread is interesting. There are as many answers to this question as there are posters. That probably means that there are no specific answers. What works for one may not for another. Like I have thought from the beginning, its all a guess.
It does seem to me that if someone is selling it, it must be the one thing you need.
I think I'll try what I can afford, listen to my LLD, and trust in God. There are factors that contribute to wellness that don't come in bottle or pill form.
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
bwillis-i agree we are all different. just think about it: 300 strains of Bb, co-infecs, virus, each of us with different genes and histories...the variables are hard to fathom
but this thread is doing exactly what i hoped it will do. soon i will try to summarize the info. i'd like to have it on one page so i can cross off things i attack and then see what i should do next.
we all have our own reality with this disease-but i think sharing our knowlwdge and experience helps.
the one thing we know is we are all different and there is no accurate test or cure at this point.
i'm just trying to organize a huge amount of info for our mutual benefit
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
mold
see thread by littlelymie19 topic: mold experts out there - i need your help...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dr. K treats all of his Lyme patients first for worms and parasites from the largest to the smallest.
They protect the bacteria, so it makes sense to get rid of them and then it will be easier to go after the other infections. It's like peeling an onion.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think also--I don't know what your definition of a good ILADs treatment is--but not treating coinfections because you don't have a positive test can be huge.
Treat for all co's whether or not you test positive = better success (IMHO).
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic