posted
Since my initial results were borderline, both IgenX (through my ND) and a LLND said the way to tell if I had Lyme was a retest after a month of Doxy.
So....here's my first test
IGM 23-25 IND 31 IND 34 + 41 +
IgG
39 IND 41 ++
And now the retest
IgM
31 IND 34 IND 41 + 66 +
IgM
31 IND 39 IND 41 ++
So the results did change, but also fell out of the IgenX positive range. Should I take this to mean that since they changed, I likely have Lyme and need to pursue a LLMD (which will not be an easy task given my location and health, so I don't really want to go for no reason), or does it mean it really isn't Lyme?
posted
Usually if an LLMD suspects you have lyme and is treating you for lyme, you are to be treated until you are feeling better or your symptoms are relieved. I've even heard that most LLMD's treat a month or 2 after you feel totally better.
The reason for this is the tests for lyme just plain suck and are not a good indication of whether or not you have an active infection or a past infection or if you're infected at all. I would get a second opinion if I were you.
(breaking up the paragraph for easier reading for many here)
posted
Yeah, that's my understanding too. In this situation though, we're still trying to diagnose if I actually have Lyme or not.
IgenX and the LLND felt if the tests changed, then I do. And the tests did change, but to a point where they wouldn't be positive, while they were borderline positive the first time. It's all very confusing for sure!
(breaking up the paragraph for easier reading for many here)
posted
Jordana - what are those? Where can I do them?
I'm also awaiting a coinfection panel - results due early next week.
Lymetoo - I know I have an unrelated bacteria issue stemming likely from leaky gut and celiac healing - I've been told it's possible - not necessarily likely but possible - that's causing some false positives.
Bluelyme - the celiac symptoms go back nearly a decade, while the Lyme symptoms and likely time of infection was 5-6 years ago.
Celiac and autoimmune also runs in the family, and lifelong sinus symptoms got much better going GF. While I know Lyme can cause celiac, there's really little, if any, doubt celiac came first in my situation. The link is interesting though!
Thanks for all the replies so far everyone!!
(breaking up a paragraph for easier reading for many here)
posted
Lymetoo - thanks for the link! I read the link quickly and will read it again. However, it seems the IND should go to + after antibiotics. Only one of mine changed, it went to -
Posts: 81 | From Southern Ontario | Registered: Jul 2016
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posted
I think everyone responds differently to meds. Some get worse (lots), but there are some that I've talked to that didn't ever really get worse (herx).
Glad the one month helped though. That's a good sign.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
I don't know the answer to your question,"Typically isn't it Lyme if it gets worse with one month abx?"
I took one month doxy and felt better. Then the 2nd month, I started feeling horrible while continuing abx. By the start of month 3, I was experiencing brain fog.
I think that it takes more than just abx to get rid of Lyme. I didn't start doing anything more than abx until month 2, and I definitely herxed then.
I'm glad you feel better though.
Posts: 49 | From CO | Registered: May 2016
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posted
Many think that having any Lyme-positive bands show up means Lyme. Like 34 showed up the first time and 66 showed up the 2nd time. These are Lyme-specific bands.
INDs are considered weak positives.
As far as I'm concerned, you tested positive both times.
Posts: 13116 | From San Francisco | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by bluelyme: Band 41 means flagella and no good bugs have a tail...welcome sorry..but hey explains the gluton intolerance / celiac part ....
Blue, I'm curious what you know that I don't know when you say that Band 41 explains the gluten intolerance / celiac stuff?
Yes, I agree that Band 41 indicates flagella, but not necessarily Bb per se. For example, there are relatively innocuous spirochetes found in the mouth which could be causing WB 41 to show up. That's why LLMDs expect at least one other WB band which is specific for Bb before calling a test positive for Lyme.
What I don't understand though is what you meant by saying that Band 41 explains celiac and/or GI? Please clarify.
BTW, we are very knowledgeable about celiac in our family because one family member has been diagnosed with celiac, and I'm pretty sure that I'm the guilty parent with the bad gene and I'm also pretty sure that my mother (deceased) probably had celiac, too, but celiac was seldom suspected in adults in her day so she was never tested for it.
I'm also quite familiar with the concept of "leaky gut". One of my favorite illustrations of leaky gut is found in this classic article by Alessio Fasano, MD from Sci. Amer.
(Bookmark this link because it's hard to find a free copy of this article otherwise, since it's behind a pay wall on the publisher's website; however, non-profit groups are permitted to display it for legitimate "educational purposes" under copyright laws, without the necessity of charging a fee to view it.)
My understanding of the link between celiac and Lyme is that Bb elaborates a low molecular weight, fat-soluble neurotoxin that is very similar to the toxin emitted by Clostridium, which is known to be capable of contributing to increased intestinal permeability (leaky gut) by interfering with tight junctions within the intestinal mucosa.
(See the illustrations in the Sci. Amer. article (link above) to visualize how tight junctions function. For more info on the neurotoxin elaborated by Bb, consult the patent filed about it by Sam T. Donta, MD, an academic Lyme-friendly IDSA doc who is now retired, so it should be OK to name him, instead of using his initials only, I hope.)
That's why I'm asking you, Blue, what your understanding of "leaky gut" is and how it relates to both Lyme and celiac? Just curious, very curious indeed. I'm always seeking new knowledge on this subject. TIA.
LymeAndCeliac, check your PM for a special note from me, to be composed shortly. I'm eager for private contact with you via e-mail. BTW, I do concur that you are definitely positive for Lyme. Here's why....
....Celiac leads to impaired immunity because of maldigestion and malabsorption, which could account for your body's inability to mount a strong immunological defense against Bb, thus leading to a weakened WB response, one which does not satisfy the overly stringent CDC diagnostic criteria. I'm confident that any good LLMD or LLND will agree with this explanation.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Okay, my CD57 is low and I tested positive for bartonella on my co-infection test - so now I'm pretty convinced it is Lyme!
I've been put on samento, banderol and pinella for now (I am not working with a LLMD yet as there are none in this area and I'm trying to figure out how to get to one) - has anyone had success with any of that?
Posts: 81 | From Southern Ontario | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you start a new thread since your last question is a different subject from the subject of this thread.
Hopefully, then you will get more replies.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - I did that, good idea!!
Posts: 81 | From Southern Ontario | Registered: Jul 2016
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't have my test in front of me but my situation was similar. It was pretty much boarderline. I took antibiotics for 9 months. It didn't provoke a response or change my health much.
After many years of dealing with this - I still don't know if I had Lyme. I ran out of money to keep testing.
Bartonella can be from other sources than a tick. I'm not an expert...
The only thing that seems to affect my health issues is anti-parasite herbal supplements. I'm not saying this is the case for everyone but it was my experience.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by lymeandceliac: Okay, my CD57 is low and I tested positive for bartonella on my co-infection test - so now I'm pretty convinced it is Lyme!
CD-57 is non-specific. Mold hypersensitivity can suppress CD-57 just as easily as Lyme can, and probably other things that I'm unfamiliar with can do so too.
For example, a couple of years ago, the former Lyme patient in our family moved to a different part of our state where it's very humid with environmental molds plus pollution year round. Many of her worst symptoms began to return.
I insisted that she ask for the CD-57 test which came back abysmally low, but she insisted that this was mold allergy, instead of Lyme relapse, and she insisted on starting mold desensitization shots instead of restarting a Lyme protocol because she was determined to avoid antibiotics if at all possible.
Her improvement was immediate and dramatic -- like flipping a light switch. What a relief!
You're probably wondering if she retested her CD-57, but she didn't want to waste the money because she felt that it was totally unnecessary. That's just how dramatic her improvement was, and she didn't feel the need to prove it to anyone by retesting.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
My CD57 is 0.68 (ref range low if <2.26). Bartonellosis iGg 160, ref range negative if <40. My other co-infections are normal.
Posts: 81 | From Southern Ontario | Registered: Jul 2016
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by lymeandceliac: Hmmm...I am very allergic to mold...I'm confused once again!
L&C, It's not unusual to have all 3 conditions -- Lyme, Celiac and Mold Hypersensitivity. That's because HLA antigens are involved. Dr. Ritchie Shoemaker was the first doctor to keep stats on his patients and to recognize these connection.
There are some good articles out there which discuss mold and Lyme, authored by LLMDs with experience in both conditions. This is probably the one very best summary of the subject, but there are many other good articles like it if you need more info about it. http://www.betterhealthguy.com/mycotoxins
There is a genetic test to discover your susceptibility, but if you recognize your own sensitivities, then why bother paying for an expensive test just to prove a point -- unless you need to convince close family members to support you, instead of doubting your symptoms and regarding you as hypochondriac or worse yet, a crazy hypochondriac.
Contact me by PM if you want the info about how to get tested because I don't see any need in cluttering up the board with superfluous information.
I'm not sure which they recommend to treat first -- mold hypersensitivity or Lyme. Personally, based on our experience with all 3 conditions. I'd say to start by going gluten free first -- Checkmark done for you; second, treat mold hypersensitivity with an AAEM (American Academy of Environmental Medicine) doctor who uses provocative neutralization (PN) testing technique (a special form of skin allergy testing) followed by mold allergy shots for desensitization; then third, tackle Lyme.
(I think that's probably the order recommended in the article (link above), but I'm too lazy to bother reviewing the article to find out if their recommendation matches with our experience.)
I know that you are probably feeling very overwhelmed right now, but just stop to realize how really lucky you are that others have blazed the trail ahead of you. Your path should be much easier and less frustrating and far less costly because so much more knowledge about all three of these conditions is available now than ever before.
BTW, that's not the same order that we did things in because we learned about each condition at several different points in time throughout the many decades of her "mystery illness" prior to her Lyme diagnosis and then eventually her celiac diagnosis.
In that sense, I envy you for having so many more excellent resources available to you and such a much larger knowledge base, too, which were simply not available 4 decades ago.
Posts: 4563 | From TX | Registered: Sep 2002
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