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+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/27/2010 10:56 PM (GMT -6)   
I understand that this is an issue with many Lyme sufferers. This showed 'high out of range' in my blood work over a year ago.; My new LLMD made a remark about 'chronic mono'.  This INfectious Disease Dr specializes in CFS, MS, and Lyme, amongst others. 
 
IN my research on CEBV, I have seen it defined as both chronic Mono AND CFS.  I understand that a compromised immune system can cause either.  So, which one is it? Do I have chronic Mono OR CFS??  There IS a difference, but I'm not getting it....
 
I am asking because in researching CEBV, I found lists of symptoms synonymous with Lyme.
 
So, does Lyme cause these particular symptoms, or does a resulting CEBV cause them?

Post Edited (+Lyme) : 8/27/2010 11:03:15 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/28/2010 4:21 PM (GMT -6)   
Oh Geez +Lyme!!
You have hit on a subject I was trying to figure out before I lost the ability to understand & retain that level of knowledge!! I do have hope, however of that ability coming back for me, as I have had some improvement since starting treatment with my acu doc.

I do believe that the virus 'they' have connected with CFS is the XRMV virus. Here is an article in the online version of "Science Mag";
www.sciencemag.org/cgi/content/abstract/1179052v1?&searchid=1&usestrictdates=yes&resourcetype=HWCIT&ct

I have wondered how to figure out which 'condition' is creating which symptoms for a while now, as I had thought if only I could figure this out, I could then tackle each 'condition' one at a time & therefore get past all of this! HA! Not with my brain!!!

I have managed to come up with a better solution for me anyway. I am seeing a practitioner that treats the whole body as one unit, not breaking it down by systems & 'conditions'. Both Naturopaths & Acupuncture w/ Chinese herbs see the body as a whole unit, therefore there is no need to try to break everything down into what's happening in this system & what's going on with that system, as most Western Medicine docs do. Well, that's my 2 cents anyway! smilewinkgrin

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 8/28/2010 6:29 PM (GMT -6)   
I have been sick for over 15yrs. stopped working 10yrs ago. I just discovered the bood work on all the lyme and have all the coinfections too and EBV. I have been falling apart worse every year thinking it was all from HEP C. .....I wish I never found out about this lyme. knowin all I know now has made my will to fight just giving up.

But I have to say that the accupunture was the most powerful thing I did for myself back in 2000. I did it every week for almost a year. If i had the money now I would move to an area where there is a good accupunturist. I don't see the antibiotics being ok for me. I have a levequan prescription for 3 months and haven't cashed it because I'm afraid of side effects or starting something I don't have $350 a month to do/

I'm glad to hear you are doing good with your accupunturist Traveler.
hep c , lyme
Dad has lyme

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/28/2010 7:40 PM (GMT -6)   
All good points, all of you. I agree that it makes sense to treat the whole body, and I am assuming/hoping that my body will eventually overcome the EBV, regardless. But knowing that I/we have other viruses may help explain what feels like lack of improvement of Lyme, don't you think? After 2 mo of high doses of abx, I experienced a lot of relief, but never felt 'well'. A lot of the pain was gone (except for my regular back and neck pain) and that humming, buzzing, throbbing, inflamed feeling of Lyme was gone for a few months.

So, of course, I now know that my Lyme was not cured, but during those few months it seemed to be at bay, it may well have been the EBV keeping me from feeling well. So when I saw it defined as CFS on one site, I got to wondering..... CFS is difficult to impossible to get over, as far as I know. So, of course that made me wonder if I would ever feel all well again.

AND since there are so MANY Lyme symptoms, I am wondering if many of these symptoms are caused by the viruses or other infections that Lyme has caused to reactivate or that we catch because of Lyme. And maybe that explains why so many get well and others never do. Maybe the Lyme is eventually cured, but people are left with too many other infections and/or syndromes?

Trav, I'm gonna go look at your article now! Thanks!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 343
   Posted 8/28/2010 8:14 PM (GMT -6)   
I'm wondering if anyone has had success getting viral loads down with oreganol or olive leaf extract or coconut oil or monolaurin.

It's gotten so expensive paying for so many supplements and I have oreganol on hand. So just the last couple of days I've started taking 3 drops 3 times a day.

It's too soon to tell yet.

I'm wondering about the chronic mono myself. Soooo tired of being tired. I tested high a while back. Wish I'd brought it up with LLMD last visit.

My internal med MD at the time was surprised at how high it was, but the numbers were for having had it not active mono. LLMD said when the numbers are that high, it means you still have it.

I never was aware of having mono. Must have come with the tick? Or rather a depressed immune system that let the EBV take over?

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/29/2010 8:06 AM (GMT -6)   
As usual, Trav, we are in agreement. The body is a whole entity, not to be broken down in parts. While I'm a believer in the abx, I also believe we have to support and nourish while tearing down. You can't always find success just treating symptoms...for instance, my lower back pain I had had for several years was instantly relieved when I had my amalgam fillings replaced. I would have been in a mess had I treated with an orthopedic surgeon. It's all inter-connected...but my mind just won't wrap around it all at this point. Not only are there the bacteria and virus loads, we also need to consider the hormonal balances that are affected and can cause the continuation of symptoms. Why can't I be smart instead of sick?????!!!!! I would have this all figured out....!!! A blessed day to all....

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/29/2010 9:04 AM (GMT -6)   
Thank you Bucci!!

Maybe you should take another look at Acupuncture since you have already had noticeable improvement once before?? Here's a link to help you to find another 'acu doc' should you be interested.

www.acupuncture.com/index.html
On this site, you will find the "doctor finder" in the upper left hand corner of the opening page.

www.acupuncture.edu/
The 'doc finder' is in the same place here as well.

And, one more;
www.nccaom.org/
This time the doc finder is in the upper right hand corner.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/29/2010 9:13 AM (GMT -6)   
+Lyme,
I actually agree with at least the basics of what you are asking. I think that it is quite possible, especially for those of us who have been carrying these infections around for a while, that one of the main reasons our body doesn't seem to want to heal could very well be because of the viral load we are carrying.

My brain won't wrap around a lot of medical or scientific jargon as of yet, but I'm not even sure any of the really knowledgeable LLMD's could answer that with any real certainty.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/29/2010 9:29 AM (GMT -6)   
Hi Korrisa!
Oil of oregano (or oregonal) has very powerful abx type action in the body. I have used it for over 15 years just for that reason. Back when I was smoking cigs, I always got bronchitis twice a year - each time the ragweed was in bloom. I avoided paying docs a lot of money when I found "the joys" of oregano oil. IMO - 3 - 5 drops 3 x's a day is a good dose. Please, please be careful when dosing yourself with herbals as well as any 'medicine'. Do a lot of research & take your time to be sure you are understanding what you are reading. With that being said, I fully understand the need to do such things sometimes.

A person can have mono & be asymptomatic. This person would be called a 'carrier'. I was one for chicken pox way back when. Trying to figure out which came first - tick-borne infections or the virus- is a lot like asking which came first - the chicken or the egg??? One thing that is for sure though is that once you have been infected by a tick, your immune system is at a significantly lowered ability to protect us from these types of viruses.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/29/2010 9:37 AM (GMT -6)   
Mamyou,
LOL! this time I agree with you!!! I used to be able to follow along through most any medical or scientific study or report. I could wrap my mind around treating myself with herbs & supplements (& did treat myself for several years) - then I had ANOTHER relapse or just got re-infected!!! UGH! Only that time I have yet to fully recover from & that was a little over 10 years ago, now. :(

I also agree with you about everything being interconnected. This is also why it is so hard to try to separate out whether the symptoms are from a tick-borne illness or from a virus.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 8/29/2010 7:45 PM (GMT -6)   
travelor..what mean IMO ?

also i was told that oregano oil breaks down biofilms.

other than lyme people who else is effected by biofilms?

travelor, did you ever hear about magnesium and not being good for biofilms?

did you know that some lyme docs say that taking magnesium while getting treated causes relapse.

have you ever heard of FRY labs?

have you eever heard of 5 element accupunture?
does your accup use moxi ?

today is a day where I don't want to do this anymore. I'm seeing no end to the pain and being doped up on
pain meds.

I start projects and make messes. nothing works out. I'm supposed to go to a wedding out of town in 3 weeks and
I don't know which is a wowrse statement.. go and be sick or not go cause Im sick.

this is not a way to live..........it has been my entire adult life and the last 15 yrs in complete insanity just watching
everything fall apart day after day alsways fighting to get it back togetherl

all this stuff we talk about ..try this and that. no money for meds and loosing homes. what is this all about. i just dont get it
hep c , lyme
Dad has lyme

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/29/2010 8:10 PM (GMT -6)   
Hi Bucci!!
I can really understand your frustrations with this disease!! The last 14 or 15 years have been pretty hard on me too!

IMO = In My Opinion

I have heard a couple of people say that their LLMD had told them that magnesium wasn't good for Lymies, but I don't believe that, as adding magnesium oxide to my routine has helped me in a couple ways. Supplementing with Mag. Ox. may not be a good idea for some people, but to just say that magnesium is bad for Lymies is the kind of blanket statement that hurts the entire Lyme community.

I have heard of 5 element acupuncture, do you know if there is any difference between "regular" acupuncture & 5 element acupuncture?

Yes my acu doc is now using Moxa during my treatments, as well as a slight charge from a tens unit.

I started into one of my 'pain cycles' a couple of weeks ago with my legs & feet. I do this a couple times a year, and in order to come out on the other side in one piece I use narcotic pain meds. Fortunately, my gp understands that I need those types of drugs just to get through on of my pain cycles. Anyway, I am noticing that this time the pain is starting to let up a little bit & I'm only into the 4 week of it!!! There is only one explanation for such improvement - my acu treatments & the herbs that my acu doc has given me!!

Have you been treated before with acupuncture? If so you should go back & get some pain relief - it is well proven that acupuncture is better than most drugs at reducing pain.

If you haven't seen one before, would you consider seeing an acu doc now???
I can send you several links to acupuncture websites where you could learn a bit about acupuncture, and find a practitioner near you.
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