To aries 12 and any others interested

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+Lyme
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   Posted 6/10/2010 10:14 AM (GMT -6)   
I understand we are not supposed to post Dr's names here.  However, I have an appt w/ an infectious disease Dr who treats AIDS and Lyme patients. (I see in his paper that he does refer to lyme 'syndrome') I went looking for his web site, which he evidently does not have. But I found this medical paper/study that he has done, and from the FEW things I can understand, it is very interesting. 
 
It is a paper on HHV6, which showed up in my labs, so I was interested.  My labs also showed parvovirus and EBV, which are mentioned here.
 
HHV6 seems to be a part of Lyme, MS, Gulf war syndrome, CFS, and sometimes HIV. Most likely many others.  I do not understand all the connections -- and I don't think most Drs do either, so I don't feel TOO stupid.
 
So, to aries12, I would have to say it is possible that you are suffering from some other virus or infection. However,  still, that lyme showed on a significant band is suspect.
 
If anyone understands all this, please feel free to comment.  My understanding is that Lyme can be a 'triggering' event for many diseases/illnesses.  And perhaps that is why many achieve some improvement w/ abx, but are never cured.  And perhaps, for some, the active lyme infection is gone (maybe that is why too few to no antibodies show in a lab test), but the disease that it 'triggered' is chronic?
 
Do you think this is possible?  Or do you believe this is heresy? I am so anxious to ask this Dr these questins.
 
I believe I can post this, since he is not working 'under the radar'.  Looks like he has spoken at many medical conferences.  And btw, his waiting list is over a year, so people will know not to call, bugging him.
 
 
 
 
 
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.


Traveler
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   Posted 6/10/2010 4:07 PM (GMT -6)   
I have tried & tried to look into things like the connection between tick-born infections & EBV, HHV6, CFS & ME (myalgic encephalomyelitis) for a few years now. I have an actual diagnosis of EBV, CFS & tick born illnesses. With all of their over-lapping symptoms & my brain fog, I can't ever get far enough into it to understand much of anything. :(

I really wish I could, because I sure won't get any help any where near where I live (lower Midwest/upper South). Not only do the docs around here have no clue about tick-born illnesses, but they are all so hung up on dxing everyone they can with Fibro!!! I also carry that diagnosis - 18 out of a possible 18 trigger points.

I have yet to figure out if I contracted a virus first or had a very close encounter with a tick first, as I had RMSF (only it was the spot-less kind) at the age of 5, then retested positive for it as an adult - about 3 yrs ago.

If anyone CAN figure this out, I would LOVE to hear what that person thinks!! It's like someone else said - chicken...egg...chicken...egg... Hmmm...
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


+Lyme
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   Posted 6/10/2010 10:17 PM (GMT -6)   
Well Traveler, I'm gonna try working on that one.... I am very anxious to hear what this Dr thinks -- my long awaited appt is June 29. And I'm already scheduled for a 2 1/2 hrs consultation.

Lots of people on this forum believe that MS, Parkinsons and fibro ARE Lyme. Still, as you said, you have all 18 of the fibro trigger points and a lot of the rest of us do not.

Maybe it is possible that there is no way to determine which came first. Maybe some type of immunosuppressing illness (like the ones you named) came first and caused SOME of us to be more suseptible to Lyme. ANd maybe for OTHERS, a lyme infection caused the immunosuppressing (no clue on my spellings....) And maybe, for the majority of the population, their bodies fought the lyme and succeeded??

Here is one thing bugging me, and it's probably because I am NOT an expert or an MD: What other infections are spirochetes besides Lyme and syphillsis? Lyme and syphillis seem to be so closely related (meaning spirochetes, possibly many years of 'dormancy', etc). So WHY does syphillis never seem to figure in here? It can be knocked out w/ abx alone. Why are these spirochetes so different?

Oh sheesh, here comes the head hurting all over again......

So Traveler, here is an example of what I am wondering. You said you had RMSF at the age of 5. WEre you treated for it? Then, what was the most recent test you had for RMSF? IF it was looking for antibodies, and you HAVE antibodies, can we be certain that you still have an active or chronic RMSF infection?

Or, as in many other diseases and infections, might antibodies mean that you had it at one time, and so antibodies were produced, but you are no longer actively infected?

Maybe this is part of the huge debate and controversy w/ Lyme. I took my clearly reactive band 39 on the WB IgM to mean I have Lyme, because that band is one of the most specific to Bb infection. My most in depth research into the WB, the bands, and the top LLMDs' opinions indicated that if this specific band shows a reaction, then it necessarily follows that I have Lyme (Bb: active infection)

I still have symptoms, altho they may very well be related to co-infections or the viruses with which I am left.

So, could it be, as with many other diseases, that if I have a positive reaction on band 39 on the IgM, that this means only that I was exposed or infected w/ Lyme at some point, but that my immune system kicked it, and thus the species specific antibodies still lingering around.

Afterall, I probably have antibodies for measles, mumps, and chicken pox. Their presence indicates past infection and now an immunity.

If all this does not hurt the lamebrainlymebrain, then I don't know what else will!

Weary of more research, I aim to have a solid list of questions to ask this Dr, SINCE he is actively involved -- speaking and writing research-- in all of these diseases, ie; Lyme, HIV, HHV6, Parvovirus, EBV, etc. And I trust he will know a heck of a lot more about all this than I could accomplish in the next few months.
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.


Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 6/11/2010 12:24 PM (GMT -6)   
+Lyme, Congrats on your appt.!!!! I hope you find it very productive!

As far as the Fibro goes, I don't believe it is my biggest problem - even though I have the 18 trigger points. That being said, I can't figure out what is causing all of my symptoms/issues either. These dxes I've been given all have a lot of sx overlap!

I do believe that there are some individuals who have been exposed to those tick-born diseases & their bodies were in a strong enough situation to have not needed abx to rid themselves of the infection - my 2 kids are my examples, unless of course, it is just laying dormant for those people.

As far as the similarities & differences between syphilis spirochetes & Lyme spirochetes - I've wondered the same things, without finding any answers.

Soooooo sorry about your head hurting - I understand, so is mine!!! It does anytime I start trying to get back into the more scientific stuff anymore. :(

As far as my experience with RMSF - I was treated for an unknown infection when I was 5. about all my mom & I can piece together is that since I was really quite ill then, I must have been treated very aggressively, as once on abx, I recovered (or seemed to) quite quickly - but after all of my reading I wonder if all that was accomplished was to drive those tick infections into dormancy????

The most recent test I had for TBI's was about two years ago - by my regular doc. The first time that I know that I was tested for any tick illnesses was only about five years ago - by Dr. Masters (now deceased) a very wonderful LLMD. I had band 39 & 41 show positive & he told me that meant that I had definitely been infected. He explained to me that it was kind of like a pregnancy test - you cannot be sort of infected - it would be like saying "I'm only sort of pregnant".

I still can't get my brain wrapped around the whole thing of knowing IgG from IgM, but I believe that Igm means you have antibodies - evidence of a past infection(???) & that the IgG is evidence of an ongoing infection (???)

At any rate, best of luck with your doc & hope that you can get those answers.
~Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 6/11/2010 11:18 PM (GMT -6)   
Dear Trav,
 
Yep, I think (and hope) that one day we will have our answers. It's just that most of our answers will be different.
 
Reading  your post, I am not sure about what you are saying. Were you Dx w/ RMSP when you were 5? Or, as you said above, were you diagnosed for the same thing for which you were treated, namely, an unknown infection
 
 Your experience seems similar to the one I had in 1972.  I definitely got VERY sick 1 week after my Dad removed a hugely engorged tick from under my very long and thick hair.  No one, including the Dr seemed to consider the possibility of a TBI when I got very sick 1 week later. 
 
WE only knew about RMSF back then and that's the only thing anyone was concerned about. I remember both my parents freaking out when I came home from work w/ a 104+ fever and a lump on my neck, 1 week after that tick. And they searched me for rashes, of which I had none.
 
It was not long after that (within a couple weeks)  I started w/ the chronic to acute tonsillitis until I got them removed.
 So.... look at my history below.  Seems pretty obvious to me now.  However, way back then, nothing was ever linked to the tick bite.
 
I propose just a possibility to consider, well, dangit, there are SO many possibilities, however:
 
Traveler:  Perhaps  you DID, in fact, contract RMSF, or another infection, from a tick when  you were 5. And maybe the abx knocked it out.  However, the tick could also very well have been carrying many other bacteria and/or parasites. And LYme could very well have been one of them.  So maybe the treatment you received was adequate to knock out the primary infection, but was not adequate enough to get rid of the Lyme.
 
Just something to think about.
 
I'm hit and miss here, but am constantly thinking about everyone here -- and how similar, yet unique each person and case are.  I will strive to find my answers and I will share anything/everything I learn here. However, we are all so unique, there will be NO way to apply everything I learn to everybody.
 
All we can hope for are more answers. I am very pleased and excited that I will be seeing an Infectious Disease Dr who is covered by my insurance and who helps those w/ Lyme.  And even more pleased that he is doing research on all of these 'connections'.  He probably does not have 'THE ANSWER'. But I bet he's got a bunch. (of answers)
 
And Traveler, the more I think about it, the more I think about the possibility (or probability?) that abx knocked out at least one of your TBIs, but that you had more than 1, and that 1 became chronic because the abx was not adequate and neither was your immune system. (sorry, not trying to knock your immune system...)
 
Onward...... 


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.

Post Edited (+Lyme) : 6/11/2010 11:21:37 PM (GMT-6)


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 6/12/2010 12:01 PM (GMT -6)   
IgM is produced first in response to a bug, then these antibodies undergo sero-conversion to IgG, meaning the IgM antibody turns into an IgG antibody. So IgM antibodies are an indication of current, active infection.

There are a number of conditions that have symptom overlap, and many of these conditions are thought to have infectious triggers. Even Celiac Disease has been theorized by some to have an infectious trigger that somehow activates the gene that predisposes to the development of this autoimmune reaction to gluten in the GI tract (& in some, the nervous system, skin, etc.).

It is thought also that some people who are infected with Lyme have a gene that makes it harder for them to overcome the infection, but I haven't done much reading about this so don't know what the gene is or how it relates to other conditions (Fibro, MS, GWS, CFS, etc.).

Also, one reason Lyme is so difficult to get rid of compared to Syphilis is that Syphilis has 22 genes, and Lyme has over 100. This complexity of Lyme vs. Syphilis is enables the Lyme bacteria to elude treatment so effectively.

I think the only commonality between all those different infectious agents (HHV6, Lyme, MXRV, etc.) is immune compromisation of the host (i.e., us). And it would not surprise me if there was a genetic susceptability that makes it easier for us to get these infections initially (perhaps even while we are trying to fight off a more common but benign cold/flu/food poisoning) and also makes it harder for us to eradicate them on our own.

Also, it is known that Lyme (and possibly some of these other infections) can incorporate its own DNA into that of our cells, thus creating a Lyme-human hybrid cell. Dr. MacDonald (pathologist interviewed in Under Our Skin) saw this in some of the Alzheimer's brain tissue samples he was studying. I could see how easy it would be for the immune system to possibly be confused by this type of hybrid.

Furthermore, I know that viruses specifically like to hide inside the spinal column, where the immune system is less able to get to them - I've read that chicken pox, for example, does this, which is why people can get shingles later on when a stressful event or other infection reduces their immune system and thus enables the virus to re-activate and cause the painful rash. It would not surprise me in the least if something similar could potentially happen to those who got Lyme, got better, and though they were "cured" - what happens to them when they are older and their immune system is less effective or able to keep the infection under control (if this is indeed what happens)?

Ok, the above is based on things I've read about Lyme and other infections, plus a little of my own thoughts on the issue...I'm not a doctor, I just read a lot.

Take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.


Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 6/12/2010 4:33 PM (GMT -6)   
+Lyme said...
,

<FONT color=purple>Traveler
: Perhaps you DID, in fact, contract RMSF, or another infection, from a tick when you were 5. And maybe the abx knocked it out. However, the tick could also very well have been carrying many other bacteria and/or parasites. And LYme could very well have been one of them. So maybe the treatment you received was adequate to knock out the primary infection, but was not adequate enough to get rid of the Lyme.

And Traveler, the more I think about it, the more I think about the possibility (or probability?) that abx knocked out at least one of your TBIs, but that you had more than 1, and that 1 became chronic because the abx was not adequate and neither was your immune system. (sorry, not trying to knock your immune system...)
..


+Lyme,
This is what I believe has happened - as you said. I just can't seem to spit out the right words lately!
I was dxed with an unknown infection & treated for it - got better - no one ever bothered to do any checking to see if it was a tick-born thing or not, even though I was constantly outside in the trees & bushes & having my parents & even Grandparents, doing "tick-checks'' every night on me!! Oh well, that was a long time ago - 1968 to be exact!! shocked
What's more is that from that time on, I was almost always ill - tonsillitis, pink eye, mono (had 4 times in my junior year of high school), colds, flu - it was always something. My Mom (poor woman) would get so frustrated & say "Your sick AGAIN?!?!" - a lot. That's why when my health started to really fail as an adult & I finally came across Lyme Disease info- I couldn't believe it!!! Finally!!!! Something that explains my life!!!!!!


Razzle-
Man!! I sure wish my brain worked that well again!! After reading what you posted, I believe you to be correct - even though my brain can't put that many big words together & make any sense(!!!), but when I read it, it made sense.


Thank you both for your posts!!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/12/2010 8:59 PM (GMT -6)   
Razzle, you are indeed a wealth of information!  And we so appreciate it!  Altho we are sincerely sorry about the reason you have accumulated it.
 
And yes, in this medical paper, genetics do (however he described them) factor in, I believe as one of the possible 'triggers'.  And from the little I understand, along w/ all the other stuff I've read, Lyme can be a 'trigger' or Lyme can be the result. 
 
 I am so very anxious to see this Dr, learning that he is both actively researching and treating HIV, Lyme, MS, Chronic fatigue, and all the others -- striving to find the links.  I hope I am not disapointed -- I have been waiting since April 2009 for this appt!
 
Again, HHV6 showed on my labs as 'high, out of range'. My last LLMD had no idea what this meant, altho he knew to order the test. My new Dr coming up seems to believe (from what I understand) that HHV6 is a highly possible 'link'. Still, he writes that it is very difficult to determine an active infection from a past infection -- even tho there are ways. 
 
And dear Traveler, how the heck are you these days??  We 'talked' briefly awhile back about our struggles and I remember yours were very tough.
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.


Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 6/13/2010 9:54 AM (GMT -6)   
Hi +Lyme
I have wondered from time to time how you were fairing as well.

Considering that I have only been really ill with my TBI's a handful of times - I consider myself one of the 'lucky' ones. My experience with this illness has been much more of a chronic, insidious nature, leaving me house-bound a majority of the time, but not seriously ill. I have 'lost' my appendix & gall bladder & have determined that my thyroid had been seriously affected by my little "buddies" (I am now on Thyroid meds), but feel quite fortunate that I have not had my heart or lungs affected.

I have already had an amazing summer - our youngest son got married & we had family come in from out of state to stay with us for one week & I have survived that smilewinkgrin !!!! Sure feels like a huge accomplishment!!! Although it has left me quite drained & having gone 'backwards' once again - at least I have been able to enjoy & do a few things.

How have you been fairing these days? I would most definitely appreciate knowing how yur doc appt. goes on the 29th of this month!!!

Best wishes & healing thoughts to you
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/13/2010 10:58 AM (GMT -6)   
I forgot to include the following too:

If a person has more than one Lyme WesternBlot, compare the bands that show up positive. If the bands are different, then that too is considered evidence of active infection. Doesn't matter if this is IgG or IgM bands. The reason this is evidence of active infection is that the Lyme bacteria change their outer surface proteins in an attempt to evade the immune system. So that means that the immune system has to keep generating new antibodies (thus new bands) to keep up with the changes.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 6/13/2010 5:02 PM (GMT -6)   
Thanks Razzle, I hadn't thought of that!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

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