posted
Hello everyone; I've been around these forums for a few years but haven't posted much...
I've seen many doctors over the years, and none of them ever seem completely positive that I have Lyme (maybe it's who I'm seeing). My latest doctor (who's local, not an LLMD) doesn't think I have it.
I had blood tests done shortly after trying to find a diagnosis back in 2007. My blood tests came out:
In July, 2007 I was tested by LabCorp: WB IGG: 93, 41 positive WB IGM: 39 positive
My then doctor thought it showed something so then tested me through Igenix one month later: WB IGG: 31 IND, 34+, 39 IND, 41++, 83-93+ WB IGM: 18+, 30+, 31 IND, 39 IND, 41+
To me this looks pretty positive (esp. because some of the positive bands I have are specific to Borrelia burgdorferi), and by Igenix standards is.
Another doctor I saw seemed to think I had Bartonella, even though I came out negative on an Igenix blood test, there was indication of it on a test by Fry Labs (but didn't say positive).
I've also tested pos. for Mycoplasma, EBV, CMV, and HHV-6. Does this smell like Lyme to anyone else? I'm really getting tired of not knowing what's wrong and every doctor telling me something different. Help!
-Troy
Posts: 30 | From Las Vegas | Registered: Mar 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Please take a look at the post that explains the Western Blot. It is here:
"The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM.. "
If you read the entire post, you will see that IND is a weak positive. So, there is no doubt in my mind that you have lyme disease. That is why you also have all of the viruses that you have. Lyme weakens the immune system, like AIDS.
See this quote:
"Definition of Chronic Lyme Disease
Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels).. . .
Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells). As a result, not only is the infection with Bb perpetuated and allowed to advance, but the entire issue of co-infections arises. Ticks may contain and transmit to the host a multitude of potential pathogens. The clinical presentation of Lyme therefore reflects which pathogens are present and in what proportion. Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other ticktransmitted microbes can be contained and eliminated by the immune system. However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness.. . .
CO-INFECTION
A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens. These patients have been shown to potentially carry Babesia species, Bartonella-like organisms, Ehrlichia, Anaplasma, Mycoplasma, and viruses." (pages 3-4)
If you have not yet read and studied the Burrascano Guidelines, I strongly suggest that you do. Then, find a lyme doctor who follows them.
As you said, Igenex says your lyme test is positive. And, it seems you already know about the Western Blot. So, I don't know why you still are wondering if you really have lyme disease.
Perhaps doctors who know nothing about lyme are causing you to doubt your diagnosis. Forget them and forget what they say. Many people get paralyzed by these doctors who think they know about lyme disease, but really everything they "know" about it is WRONG!
Posts: 9931 | From Maryland | Registered: Dec 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Start treatment. You are positive for lyme and co-infections.
Not sure how sick you are but that's an absolute positive western blot, most people that have lyme have those co infections you have...I'd treat bart. First step, get to an LLMD.
People rarely test pos for bart. I tested negative multiple times, then started treatment based on symptoms and am seeing the first improvement in over a year.
I have all those co-infections too....don't let any dr. tell you that everyone has those, they don't. They are viruses and bacterial infections that your immune system cannot handle(if you are sick).
posted
Hi - you will need to treat for Lyme and the other infections. You can make a post in Seeking a Doctor for Lyme doctor referrals. I don't know whether there are Lyme doctors near you in Vegas. I have doctor referrals for California.
Posts: 13171 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, looks like lyme. Also looks like other chronic stealth infections that often go along with lyme. Sorry.
You say: "Bartonella, even though I came out negative on an Igenix blood test, there was indication of it on a test by Fry Labs (but didn't say positive)."
That "Indication" is important, along with a well-educated LLMD's clinical observations and assessment of your history, symptoms, etc.
Tests for coinfections are not perfect but ignoring the "indication" and thoughts of a good diagnostician can be a mistake. Most LLMDs really know what they are talking about with the coinfections, too.
You also say that you "also tested pos. for Mycoplasma, EBV, CMV, and HHV-6.
I'm really getting tired of not knowing what's wrong and every doctor telling me something different." (end quote)
It's not that every doctor is telling you something different but each doctor, each test is just uncovering more detail.
The coinfections you list are VERY common for someone with lyme. It would be a surprise to NOT have what you've listed.
Part of the shock to the patient, though, when they finally start finding doctors who are better educated is that lyme is rarely just lyme. Most "regular" doctors don't know this so it comes as a shock when an ill patient finally starts uncovering the truth.
I wish you the best of luck in settling on a good lyme literate MD (LLMD).
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just skimming back over your post.
You say: "My latest doctor (who's local, not an LLMD) doesn't think I have it." (end quote)
I hope that the above links will help you understand the importance of not hiring uneducated (about lyme) doctors,
and understanding the politics & how it is that most doctors are uneducated about lyme and other tick-borne infections so that you can avoid them.
I have a high regard for the education, experience, skill and hard work of most doctors.
But - about lyme and tick-borne infections (and other "stealth" infections) - most (those who follow the IDSA) are criminally negligent, IMO.
Aside from the fact that many are not allowed to learn more or to treat lyme, for some, it's just far too complex. The learning curve is huge. Just huge. It can take years to get up to speed.
But ILADS has physician training programs if you find a doctor who wants to learn more, although they could not learn fast enough to treat you soon, they could be a good basic support. www.ilads.org
Best of luck to you in finding a true LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
TF- "As you said, Igenex says your lyme test is positive. And, it seems you already know about the Western Blot. So, I don't know why you still are wondering if you really have lyme disease."
I think it's partly seeing a non-LLMD and him saying he doesn't think I have it, partly having had treatment from Dr. K for 3 years and never seeing any appreciable improvement, and partly my brain (I have a horrible memory and foggy head all the time). I also don't ever remember having a Herx over the last 5 years of trying to treat Lyme.
Robin123- Vegas is horrible for any kind of doctor. I'm making a list of doctors in California right now - do you know if they're actually good or do you just have names? I'm trying to find someone who specializes in neuro lyme and so far I found a doctor named Dr. S. that does in CA that I got from ILADS.
Keebler- It was really a last-ditch effort. I had been traveling out of state for 4 or so years for Lyme, hadn't seen any improvement, was tired of spending so much money, and he was recommended by a very close friend. But yes, I just need to find a LLMD that can treat my neuro lyme. Thanks for the info on Bartonella testing - that's really helpful.
Timaca- HHV-6 IGG 1:1280 (LabCorp) CMV Ab IGG 4.55 (Quest) Mycoplasma Ab IGG, EIA 1.46 (Quest)
(Through LabCorp...) EBV VCA IGG 1:640 EBV Early AG IGG 1:80
(Through Quest...) EBV Anti-VCA IGG 5.00 EBV Anti-VCA IGM 1.30 EBV Anti-EBV IGG 4.71 (Not sure what all these things really are yet- I need to do more research)... By the way, these tests were all done back in 2007.
I've also never had IV antibiotics - I've read that this can be pretty important for someone with Neuro Lyme. I really don't have any body pain, just major fatigue and major cognitive issues.
[ 01-24-2013, 11:17 PM: Message edited by: johnny_broadway ]
Posts: 30 | From Las Vegas | Registered: Mar 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Troy~ CMV and Mycoplasma lab results are not remarkable (meaning they are likely past infections). HHV-6 is high and you might want to repeat that at Focus lab. See: http://chronicfatigue.stanford.edu/infections/herpes-tests.html and (Read more on HHV-6 at the link I provided earlier).
Focus is owned by Quest lab so if your doctor orders it to be run at Focus, then you can talk with your local Quest lab about making sure it gets sent there.
posted
timaca - I am going to have those retested. Is there any concrete way to know if they are active infections though, other than a clinical diagnosis?
Unfortunately Quest isn't in my insurance company's network, but I'll look how much the tests are without insurance. I've also never heard of Coxsackie B before, so I'll have to read about that.
Thanks for all your help!
Posts: 30 | From Las Vegas | Registered: Mar 2008
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