Open main menu
☰
Health Conditions
Allergies
Alzheimer's Disease
Anxiety & Panic Disorders
Arthritis
Breast Cancer
Chronic Illness
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Irritable Bowel Syndrome
Lupus
Lyme Disease
Migraine Headache
Multiple Sclerosis
Prostate Cancer
Ulcerative Colitis
View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders
Bipolar Disorder
Breast Cancer
Chronic Pain
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Hepatitis
Irritable Bowel Syndrome
Lupus
Lyme Disease
Multiple Sclerosis
Ostomies
Prostate Cancer
Rheumatoid Arthritis
Ulcerative Colitis
View Forums A to Z »
Log In
Join Us
Close main menu
×
Home
Health Conditions
All Conditions
Allergies
Alzheimer's Disease
Anxiety & Panic Disorders
Arthritis
Breast Cancer
Chronic Illness
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Irritable Bowel Syndrome
Lupus
Lyme Disease
Migraine Headache
Multiple Sclerosis
Prostate Cancer
Ulcerative Colitis
Support Forums
All Forums
Anxiety & Panic Disorders
Bipolar Disorder
Breast Cancer
Chronic Pain
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Hepatitis
Irritable Bowel Syndrome
Lupus
Lyme Disease
Multiple Sclerosis
Ostomies
Prostate Cancer
Rheumatoid Arthritis
Ulcerative Colitis
Log In
Join Us
Join Us
☰
Forum Home
|
Forum Rules
|
Moderators
|
Active Topics
|
Help
|
Log In
Ideas/Opinions from you all - my treatment
Support Forums
>
Lyme Disease
✚ New Topic
✚ Reply
1
2
3
❬ ❬ Previous Thread
|
Next Thread ❭ ❭
Psilociraptor
Veteran Member
Joined : Jul 2016
Posts : 1420
Posted 9/1/2016 1:39 PM (GMT -5)
For me the nerve issues and brain problems are connected so maybe a herx. I find sida Acuta and cryptolepis hit these HARD if mino doesn't do it for you
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 1:49 PM (GMT -5)
Psilo - I am thinking that maybe even my nerve pain - is from the CNS - not the PNS.
And I do have other CNS issues - short term memory still comes and goes, even the shivering and sweats could be from autonomic nervous system dysregulation (maybe not Babesia), nerve pain, vibrations...pressure in my head...
acckkkk - trial and error I guess.
I was taking sida and cryptolepis...but recently stopped...giving my esophagus a rest...
I plan to add in more Buhner herbs again...
k07
Veteran Member
Joined : Sep 2015
Posts : 3470
Posted 9/1/2016 2:32 PM (GMT -5)
No, the hair test is good. I did it for all 3 of my kids and our uranium level was all similar (I was .2, son was .2, daughter .29, daughter .27). I've only had the chelator tests. Also, I've done 3 hair tests (once every 6 months on my youngest) and we've seen a slow drop in most metals and one that increased I also had increase. So I have to believe it's accurate.
Your hair only shows what metals you are excreting. There are some tricks to reading hair tests. Order the one that also has the minerals on it. If certain minerals are low or high (I can't remember right now) it indicates you likely have high mercury. Since you are taking ALA though you are likely excreting the metals.
I have significantly lowered all my metals to the point that they are not a real concern. I did a few rounds of DMSA. Mostly though, just ALA, Modified Citrus Pectin, NAC and green smoothies that I put AmazingGrass green powder in, bentonite clay baths and drinking Fiji water.
I would say based on your list, you could prioritize what you feel you should tackle. I've explored everything on your list except the biological dentist. I had all my amalgams replaced years ago - unfortunately I was pregnant at the time. Stupid! But I think I'm going to have my crowns checked and also my wisdom teeth spots.
Also, I have no respiratory symptoms - but I do experience allergies. My son does have a slight chronic cough. I am not sure if mold always produces respiratory symptoms. I am anxious to figure out what is causing the gliotoxins.
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 3:07 PM (GMT -5)
Can you have a hair test for metals if you color your hair?
k07
Veteran Member
Joined : Sep 2015
Posts : 3470
Posted 9/1/2016 4:03 PM (GMT -5)
No you would have to use other hair...
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 4:07 PM (GMT -5)
k07 said...
No you would have to use other hair...
other hair? from where?
I have hardly any on my arms and legs....
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 4:08 PM (GMT -5)
Maybe I could get a piece under my hair at the back of my head. Cut it right to the root after my color has grown out for a couple of months.
Might get an inch. Is that all you need?
k07
Veteran Member
Joined : Sep 2015
Posts : 3470
Posted 9/1/2016 4:27 PM (GMT -5)
Your supposed to take from a few spots around the nape/sides. I think the inch closest to the scalp is supposed to represent 3 months. You could call Doctors Data and they may be able to tell you for sure. I ordered it through Direct Labs so I didn't need a doctor.
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 4:50 PM (GMT -5)
I looked at Direct Labs - I think it's only for the U.S.
bluelyme
Veteran Member
Joined : Nov 2015
Posts : 6219
Posted 9/1/2016 6:07 PM (GMT -5)
Everybody has heavy metals and parasites ...those are rabbit holes ...i would stay on the nystatin but piro daid it is static but not cidal ..like many of our abx ...keeps it from growing but doesnt actually kill it ..my llmd.. said only herbs and venom can slip past effllux pump of these super bugs ...for as much as a test ...you can get a scope and do stains to verify babs .... it gets so tiring girlie ..hugs as you venture ...it has been 2 yrs ?.. my first llmd said i would be on abx with herbal breaks for life ...i wasnt ready to hear that ...still not that is why i sting ..consider adding rife ? (Plasma)
blueberrymuffin
Veteran Member
Joined : Mar 2016
Posts : 1467
Posted 9/1/2016 6:42 PM (GMT -5)
Girlie and what about
your viral load?
I have so much problems because of viruses
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 6:46 PM (GMT -5)
I was never tested for viruses.
So, I don't know.
Other than EBV, what else should I be looking for?
I did take Lysine for awhile.
EBV - is mono, right? I don't have any fatigue issues...would that make me exempt?...lol
magoo2
Veteran Member
Joined : Mar 2015
Posts : 1671
Posted 9/1/2016 7:16 PM (GMT -5)
Girlie-you should check metals and dental.
I have worked with both Rau from Switzerland and Dr Y from St. Louis
both would test you metals with a challenge test and Rau wouldn't have a second appointment with
you without checking dental. Dr Y would also check dental
Something or somethings are holding you immune system back-could easily be both
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 7:24 PM (GMT -5)
magoo - it could also be Babesia holding me back...not sure yet.
I have asked my LLND about
the metals..and he said he didn't think it was a problem...so until I find a new LL Dr. who is on board.......
I don't think it's dental (unless it's my amalgams) - which would be metals. I don't have any root canals.
blueberrymuffin
Veteran Member
Joined : Mar 2016
Posts : 1467
Posted 9/1/2016 7:29 PM (GMT -5)
My LLMD also told me that I should not test for heavy metals, as I didn't work in factory or been exposed to them.
EBV can cause neuro pain and it can be very intense.
Olive leaf extract is good for viral issues. Maybe you can add it to your protocol?
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 7:31 PM (GMT -5)
Can you have EBV without the fatigue, blueberrymuffin?
blueberrymuffin
Veteran Member
Joined : Mar 2016
Posts : 1467
Posted 9/1/2016 7:43 PM (GMT -5)
I am not sure, but I think you can. It is all very individual, like Lyme.
Now it comes to my mind, the best way to test yourself if you have EBV or any Herpes virus is to take Acyclovir and check whether you feel better. It is the approach from doctor M (Germany).
AK
Regular Member
Joined : Aug 2016
Posts : 248
Posted 9/1/2016 8:26 PM (GMT -5)
As I am reading this, it just points to the sad state of lyme treatment. I mean seriously, somethinig so prevalent and still the patients have to come up with the protocols for this serious life stealing illness....Very creative and smart bunch - trailblazing to try to function. Just reading this, I am pretty sure that I would trust Girlie and her expertise more than the first 26 doctors that I saw! Are all the specialties like this, or are we the lyme people just exceptionally creative!?
magoo2
Veteran Member
Joined : Mar 2015
Posts : 1671
Posted 9/1/2016 8:31 PM (GMT -5)
You are probably right-maybe treat babs for a year.
if that doesn't work you can always come back to dental and metals.
FYI metals in jaw will lower immune system-
k07
Veteran Member
Joined : Sep 2015
Posts : 3470
Posted 9/1/2016 8:35 PM (GMT -5)
Girlie - i'm trialing famvir (prescript
ion) for viruses (ebv, hhv6). My afternoon fatigue has greatly diminished and lymph node went down some. But that's all it has effected. I am happy with it since I had some kind of improvement. But you have good energy and not tired?
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/1/2016 10:42 PM (GMT -5)
AK - I know - it's crazy - we try to sleuth out what else could be wrong with us...as if Lyme and co's isn't enough!
...and we have LL Dr.'s, but sometimes they aren't on the 'same page' as us...
I think us Lymies are a rare bunch.
magoo - treat Babs for a year...? I would hope I'd know if I was on the right track sooner than that...
One of the reasons I'm at this point so late in my treatment - is my LLND did Lyme only antibiotics for a full year...no reason for that...4 or 5 months in - the Rifampin should have been added...
...and now...if I have babesia...I want to know now...
Thing is - I've had some significant symptoms disappear. One being my swollen/sore clavicle lymph node.
Another one - my pulsatile tinnitus is about
80% better. So, I have done some healing...
I do have good energy - my complaint is mostly nerve pain and vibrations/shivers.
magoo2
Veteran Member
Joined : Mar 2015
Posts : 1671
Posted 9/2/2016 7:41 AM (GMT -5)
Girlie if you want to know now then go see a biological dds and get your heavy metals tested. Then you know. For some reasons people like to treat for years without ever check some simple things. I did test both and was very surprised to find a major dental infection. That my normal dds clearly missed
Cleaning out the dental greatly increased my health-it may be the piece holding you back.
I have been a patient of Dr Rau and Dr Yu-both would check dental and metals on your first visit. Getting tested metals and teeth is easy
blueberrymuffin
Veteran Member
Joined : Mar 2016
Posts : 1467
Posted 9/2/2016 11:09 AM (GMT -5)
These biological dentists are soooo expensive. Do you think it would be ok to change metal fillings at regular dentist? I can't afford going to biological one.
Girlie have you tried ALA, it is great for nerves?
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 9/2/2016 11:27 AM (GMT -5)
magoo - I checked out Biological dentists awhile back - there were two - and they do remove amalgams...but they're not looking at the structure (like the dentist that Heather's Dad took her to) - and they both come with bad reviews.
BBM - You could talk to your dentist and see what their procedure is...so that you aren't ingesting the mercury. I have asked mine and she doesn't use oxygen while the removal is done...so I'd definitely getting the fumes.
A dental dam is used (obviously) and suction...that's pretty much it.
Yes, I take ALA.
magoo2
Veteran Member
Joined : Mar 2015
Posts : 1671
Posted 9/2/2016 7:44 PM (GMT -5)
I would not use a dds who doesn't understand how dangerous it is to remove mercury. Can be life and death
I know its expensive-I fly to Phoenix and use a biological dds there-I have also seen a great biological dds in northern Wisconsin.
My "hidden infection" was found with EAV and confirmed with cavitat-my regular dds missed.
You can call the Huggins group and ask them if there are any other biological dds around you
✚ New Topic
✚ Reply
1
2
3