'Post Lyme Syndrome'?

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+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/30/2009 10:40 AM (GMT -6)   
It's more than I can discuss today, but I wanted to post and see anyone's input.  Evidently, there are Drs and certain meds who do not believe in chronic lyme INFECTION, but they believe in the chronic symptoms people suffer from Lyme and call it 'post lyme syndrome'.  They believe the infection is gone, but as if having had  a lyme infection, even tho 'cured', might cause an illness that cannot be treated.
 
So, seeing that I have anitbodies specific to lyme in my body, would not prove that I have a current lyme infection that can be treated. It would mean that I was exposed at one time and am now just stuck w/ the post illness syndrome.
 
I'm asking because there are so many of you out there on treatment and still suffering, and many of you who are coming to believe there is no cure.  Could the ticks just be leaving us w/ incurable suffering? (like if you had had polio)
 
Could that possibly be the reason for so many people having negative tests? could it be that they no longer have any spirochetes, but are left w/ the devastation of the prior infection?
 
I'm sure you all have opinions on this -- What are your educated opinions?  (I believe that all of you have done more research than most Drs and labs, so your opinions are valuable)

Post Edited (LymeUnknown) : 5/30/2009 10:53:21 AM (GMT-6)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/30/2009 1:21 PM (GMT -6)   
I believe my SSDI paperwork calls me s/p Lyme disease............... and if I remember correctly, it is the diagnosis/code for "post-lyme symptoms/syndromes ".... if anybody out there knows the code for Medicare SSDI s/p Lyme disease... feel free to chime in!!!!!!!!!!!!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 1:24 PM (GMT -6)   
I have not done nearly as much research as others and hate to say it but I do believe it's a possibility when the brain and cns have been effected.

One of the doctors who diagnosed me years ago with CFIDS believed that the brain was responding to an infection that no longer was present or active (fevers, inflammation, headaches, swollen glands, etc.). I now believe that most people diagnosed with CFIDS actually have Lyme Disease and it would explain what many are experiencing.

I also believe in trying aggressive long-term treatment before even considering this to be a possibility though, especially since many people do eventually respond. If someone feels better while taking antibiotics or during some other form of treatment, then I would think the spirochetes are still there and need to be dealt with. If someone, after long-term aggressive treatment reaches a plateau and no longer responds to any form of treatment, then I would think it's due to some form of permanent damage.

From what I've experienced myself and read about, anything seems possible with Lyme.

Just my humble opinion since I still have so much to learn.

mmadsengreabe
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/30/2009 3:35 PM (GMT -6)   
My daughter was diagnosed with Lyme last summer when she was seven and was treated with antibiotics and hospitalized. Since then (10 months ago) she is sick regularly with fever, headaches, achiness...I'd say on average now about every three weeks she misses a day or two or three of school. I took her to a pediatric infectious disease dr. at Hitchcock in Lebanon, NH and he said her symptoms have the "flavor" of a post-Lyme syndrome. But he also said this usually only lasts 6 months and we are at 10 months now. I am concerned that she might have been infected with other diseases (like ehrlichiosis, babesia, or borrelia) when she contracted the Lyme...
My local dr. doesn't seem to get it. Does anyone have a dr. to recommend (in New England) who has a background with all this and could help us figure this out?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 4:04 PM (GMT -6)   
I'm sorry your daughter has not been feeling well. It's possible she was not treated long enough to begin with. You can contact stephanie@turnthecorner.org for a list of llmds in your area. Good luck.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/30/2009 7:21 PM (GMT -6)   
I personally believe that Lyme, like Syphilis, can remain in the body and cause symptoms long-term. Many viruses are able to do this, too (EBV, CMV, HH6, Polio, etc.). The film, Under Our Skin, showed research proving the presence of a viable Lyme infection in the brains of 7 out of 10 alzheimer's patients at the time of their death (he obtained samples from a brain bank).

The negative tests are primarily due to the elusive nature of the Borellia bergdorferi bacteria, the suppression of the immune system, and the poor quality of the tests.

Those who do not see improvement after long-term treatment have not been given the proper treatment, have a coinfection that has not been treated, or have damage that their body is unable to repair (nutritional imbalance plays a role in this). Can Lyme disease trigger autoimmunity? I do not believe it is "true" autoimmunity. I think the body's immune system is recognizing cells that have been damaged or altered by the Lyme bacteria and is trying to remove those cells. This is just my own theory. I came up with this theory because of the brain research from Under Our Skin. The research showed Lyme-human hybrid cells in the brain samples. If Lyme can do it in the brain, it can do it elsewhere. What if the body isn't attacking healthy cells, but rather is attacking Lyme-human hybrid cells? Medical science just isn't advanced enough right now to understand how all this stuff works or how to really test for it in live human beings.

Just my $.02...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/30/2009 7:36 PM (GMT -6)   
Thanks for all the input. I consider this a huge part of my 'research'. Razzle, I understand that you are saying, for example, in syphilis and polio, when late stage, the infection/bacteria/virus are still active, and these symptoms are not devastations from having HAD the diseases, correct? If so, that gives us great hope that we can fight the fight.

I have watched all the pieces of 'Under Our Skin' at youtube, but I don't get all the info. Where did you see this movie and how can one get the video?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 7:39 PM (GMT -6)   
Razzle, You have so much knowledge and offer so much to this group. I wish you were in a position to start educating those darn md's out there who do not have a clue. But then again would they even listen?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/31/2009 12:33 AM (GMT -6)   
Hi LymeUnknown,

I'm not saying that Lyme can't cause severe damage that may or may not be permanent - I do believe that it is possible for severe damage to occur (the permanence of this type of damage depends on a number of variables). What I am saying is that I believe most cases of prolonged symptoms are from active chronic infection.

The DVD was for sale at a local screening of the movie, and since I was unable to attend, a very kind member of the support group got a copy for me. I have watched it several times at home with family members. I also read the book by Pamela Weintraub, Cure Unknown, and it has a lot of additional info that goes right along with the movie (bought Cure Unknown online).

Scorpio,

The only doctor I have who listens to me is my Naturopath, and he's the first one (of the what seems like 100 or so doctors I've see) who tested me for Lyme. So I figure if I can't educate my doctors, I'll educate everyone else--that means all of you, LOL ;)

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.

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