Just found out I have active lyme disease. I am stunned. Help!

[WillowJ]

Just be sure that your probiotics are at least two hours away from your antibiotics. Something that needs to be refrigerated is generally better than something that claims to be shelf-stable.

I have not heard of using doxycycline alone for Lyme. Azithromycin with one or two other abx is more standard. Flagyl is pretty strong stuff, I hear; not everyone can tolerate that.

 

[Ema]

Thanks so much for this wealth of information. It is very helpful indeed. I did get the results today and it looks like I am:
IgM reactive for bands 23 and 41.
I am IgM non-reactive for band 39 (only three bands tested).
I do not have any IgG reactions for any of the bands tested: 18, 23,28,30,39,41,41,45,58,66, and 93
After doing some research it looks like band 23 does not cross-react with other stuff (but I don't know that for a fact). That leads me to think that maybe the test is somewhat definitive and I actually could have lyme disease, although I do not remember getting bitten by a tick at any time.
I am getting tests for activated EBV and Hep 1 and 2 to rule those out anyway.
Unfortunately there are no lyme literate doctors near me at all. There is one guy who treats Lyme disease a lot in Chicago, but he is not officially LLMD. He is very expensive.
My general doctor has written a prescrip for doxy if I need to start something (like if I can't get into to see someone else soon). He is urging me to take care of this soon because it is an active infection.
I guess the main question I have about doxycycline is how long does someone take it? This an area where it seems that the medical "establishment" and the "alternative" lyme doctors disagree.
Do you think this looks relatively definitive for lyme disease?
Any info greatly appreciated!!
Liz

I would start by reading this essay on the limitations of the Western Blot so you understand what the test can and can't tell you. Ultimately, Lyme is a clinical diagnosis because the testing is so poor. That is why I think it is crucial to get a LLMD on board to help you. I'm not sure exactly where you are located but my LLMD is on the far north side of Indianapolis. Chicago would only be a 2-3 hour drive and I would heartily recommend her. PM me for her name if you are interested.

http://www.canlyme.com/wb.html

But in the meanwhile, if I were in your position, this is what I would do based on what you have shared...the test you have shared is IgM positive by the CDC guidelines. This is rare in my opinion. Most people do not catch Lyme at this stage before an IgG response has been mounted. This leads me to think that either the testing was faulty for IgG - ie perhaps some of those bands were REALLY close to being positive but just barely missed. The Quest test may call that negative while the IgeneX test would call that Indeterminate. The other possibility is that your immune system is messed up and not providing an appropriate IgG defense. Either of these could be equally likely at this point given your history of CFS for the last 20 years.

If I had to guess based on your history of CFS, you will likely test positive for a variety of bacterial and viral infections. This is what happened with me. This can indicate a faulty immune response and it may be worth testing total IgG and subclasses. Many people have a subclass 3 deficiency and this can make us more susceptible to infections of all sorts. If the other testing comes back positive, I can send you some links on this as well.

If it were me, I would go ahead and start the doxy. Hopefully he has given you a good solid dose of it. I would also start grapefruit seed extract (OTC) as this can attack the cyst form almost as well as Flagyl and may also give you some insurance against candida if you are prone. There are capsules and liquid forms available. I use the liquid at 25 drops in an 8 oz glass of water 3 times a day. It tastes absolutely dreadful. But it is working...

Then I would get your doctor to order the IgeneX tests and repeat them for IgM and IgG. It will cost about $185 dollars but I think it is money well spent to know what you are really dealing with here. It's also possible that starting the antibiotics will stir up the bacteria and your immune system could possibly kick up a better response to the test at this stage.

When you get the results, you will probably be 2-4 weeks into antibiotic treatment which is not long enough in my opinion to cause any serious harm. People take doxy long term for acne all the time (not that this is recommended; just that it is relatively benign). I would continue to take the probiotics away from the AB's and consider adding in saccharomyces boulardii which is good insurance against c diff and any AB associated diarrhea.

If your new test comes back indicating the same results, then you will need to find a LLMD and get on the third type of AB in my opinion. Generally a recent infection could be treated aggressively in 6-12 months of treatment as a general rule. Of course this is not what the general recommendation would be. I think they recommend 2 weeks which is almost never long enough according to the LLMD's.

I also agree that the Insights into Lyme is a great book filled with a wealth of useful info. But I got a little overwhelmed by it so take it slowly if need be and remember that not every Lyme patient will need every treatment.

TL;DR version:

I would start doxy and retest with IgeneX.

 

[Ema]

Here is the link to the IgeneX testing: Tests 188 and 189 are the IgM and IgG tests.

http://igenex.com/Website/#

 

[lizw118]

Thanks!!

 

[kurt]

Just want to agree with Ema's advice, to get re-tested before taking this too seriously. To have an IgM only positive is a bit strange for a chronic CFS case unless you recently were infected.

Also, if you do pursue doxy, I suggest following the Garth Nicolson protocol for multiple chronic co-infections, which includes regular breaks, probiotics, etc. I'm speaking from hard experience as I took doxy for a full year and developed a host of problems as a result, I did not follow Nicolson's protocol but wished I had. The problems I developed included a swollen pancreas (known side-effect with long-term use), and severe digestive dysbiosis that led to a worsening of my CFS. However, for the first 6 months or so life was wonderful, I thought I had found the cure.

The problem with treating Lyme as the cause of CFS is that by the time you have CFS, the Lyme is usually disseminated and nearly untreatable. 30 days of abx won't touch the problem, those spirochetes are in tissues and even bone where the abx (delivered by blood) can not touch them. Also, they are cycling through multiple forms, and are sometimes not vulnerable. In my own case, with a positive test for Lyme 10 years ago, I eventually settled for a disease management approach. I try to keep the Lyme dormant, but mostly using natural abx.

FWIW, minocycline did nothing for my own Lyme infection, only doxy helped, but I did not want to stay on that. I did try a short course a few years later, after my pancreas was working better again, but it did not help like the first year.

Some natural abx that helps me: GSE, oregano oil, olive leaf extract, colloidal silver (I just use that occasionally), and chlorine dioxide solution (CDS, a new form of MMS). The CDS is probably the best of all of them, but it also only helps to a point. Another natural treatment has been Kyolic Immune Formula, which boosts the NK function with aged garlic and mushroom extracts, and actually gives me more energy. Unfortunately, RIFE does not seem to work for me, except it aggravates symptoms for awhile.

I know your doctor is rushing you but if you've been sick for decades, and Lyme is part of your pathology, you are probably way past the short time period where a quick course of abx could solve this.

 

[lizw118]

Thanks Kurt
This is definitely the other side of the coin that makes me leery of taking antibiotics. It's a really difficult thing to figure out. Plus I am not 100% sure this is NOT a new infection, because I haven't been tested before. If I knew for absolute certain that this was a reactivated bacterial thing coming back then it would alter my thinking a lot. But even the small possibility that it is actually new (I was up north recently but I never go out into the woods so it seems unlikely I got bitten by a tick, but who knows???) I really have to think about the pros and cons. It sounds like maybe long term ABX therapy is not that helpful after a certain point. Would you agree?
Thanks again
Liz

 

[Sushi]

Thanks Kurt
This is definitely the other side of the coin that makes me leery of taking antibiotics. It's a really difficult thing to figure out. Plus I am not 100% sure this is NOT a new infection, because I haven't been tested before. If I knew for absolute certain that this was a reactivated bacterial thing coming back then it would alter my thinking a lot. But even the small possibility that it is actually new (I was up north recently but I never go out into the woods so it seems unlikely I got bitten by a tick, but who knows???) I really have to think about the pros and cons. It sounds like maybe long term ABX therapy is not that helpful after a certain point. Would you agree?
Thanks again
Liz

Also, some researchers seem to think that a small percentage of lyme infections are spread by insects other than ticks!

Sushi

 

[taniaaust1]

I have been trying ALA and feeling awful, which I thought was metal detox, but which I now think is lyme disease symptoms. Could the ALA have reactivated it?

Maybe you also have mercury issues? Ive read that those who have a lot of stored mercury in their bodies may respond negatively, due to the ALA it mobilizes mercury, which then allows it to impact on other body areas including the brain.

You may need to find an expert in mercury detox for advice...some say it one has a lot of stored mercury..it needs many frequent doses every few hours apart to make sure its cleared from the body and not just mobilized around the body to lodge in other places (which can be dangerous).

 

[lizw118]

Also, some researchers seem to think that a small percentage of lyme infections are spread by insects other than ticks!

Sushi

Yeah, I am starting to wonder if maybe there are other ways to get lyme as well. It seems like there is still a lot that is not known about it and it wouldn't surprise me if lyme could be spread other ways. I wonder if that is what happened to me.
I also still wonder if one can get lyme from an animal bite, or something like that...
Liz

 

[lizw118]

Maybe you also have mercury issues? Ive read that those who have a lot of stored mercury in their bodies may respond negatively, due to the ALA it mobilizes mercury, which then allows it to impact on other body areas including the brain.

You may need to find an expert in mercury detox for advice...some say it one has a lot of stored mercury..it needs many frequent doses every few hours apart to make sure its cleared from the body and not just mobilized around the body to lodge in other places (which can be dangerous).

Hi Tania
I am doing the frequent low dose protocol now, although I am in the off part of the cycle. I do have heavy metals in my system, so I think those have been mobilized, and I am hoping I can flush them out. Although it is so hard to know what is actually happening!
Liz

 

[globalpilot]

I just had a look at my Igg3 levels. My test result was .26 (.2-1.1) so although within the nromal range, it is only 6% above the low end and the mean value is .51. So only 1/2 of the mean value.
This is not drastically low but is it possible this lower value is still causing an issue ? How would I know ?
Mean value found here: http://ednieuw.home.xs4all.nl/IgGsubclasses/subkl23.htm

 

[globalpilot]

Regarding the Lyme testing, I have relunctantly tested through Igenx for western blot Igm, IgG and 31 kda epitope Igg. I say relunctantly because I really don't feel I have Lyme and didnt' want to invest the time in learning about these seemingly complicated tests. My doctor has bee n pushing it for a year or so , so I finally did it so we could move on.

My WB IgM was -ve, WB IgG was inconclusive. I'm still waiting on the 31dkda epitope Igg. If it is negative, is this a definite negative result and if it is positive, is this a definite positive result. I really would liek to get this settled and move on.

 

[xrunner]

According to the ILADS guidelines, Lyme should be diagnosed on a clinical basis. Tests, with either positive or negative results are not critical in the diagnosis.

 

[Ema]

My WB IgM was -ve, WB IgG was inconclusive. I'm still waiting on the 31dkda epitope Igg. If it is negative, is this a definite negative result and if it is positive, is this a definite positive result. I really would liek to get this settled and move on.

It's important to remember that Lyme is a clinical diagnosis. The tests are just not definitive enough at this point to be the end-all answer.

But I would be curious to know what bands were positive on your WB IgG? Some bands are more clinically significant than others.

 

[Ema]

I just had a look at my Igg3 levels. My test result was .26 (.2-1.1) so although within the nromal range, it is only 6% above the low end and the mean value is .51. So only 1/2 of the mean value.
This is not drastically low but is it possible this lower value is still causing an issue ? How would I know ?
Mean value found here: http://ednieuw.home.xs4all.nl/IgGsubclasses/subkl23.htm

I would say that is low but realistically you will probably have trouble getting any kind of IVIG treatment (or insurance to pay for treatment) without having it fall below range.

Have you been diagnosed with a lot of viral and/or bacterial infections (other than the Lyme below)? That's usually a sign of low subclass 3.

 

[globalpilot]

According to the ILADS guidelines, Lyme should be diagnosed on a clinical basis. Tests, with either positive or negative results are not critical in the diagnosis.

Then, really, what is the point in testing. Neither positive or negative results are meaningful. I wish I had saved my $400.

 

[globalpilot]

I would say that is low but realistically you will probably have trouble getting any kind of IVIG treatment (or insurance to pay for treatment) without having it fall below range.

Have you been diagnosed with a lot of viral and/or bacterial infections (other than the Lyme below)? That's usually a sign of low subclass 3.

Hi Ema, I've been testing for HHV6 (-ve), EBV (-ve), CMV (-ve), chlamydia pneumaie (+ve), chlamydia psittia (-ve), candida albicans (+ve), krusei (+ve), tropicalis (-ve_

So, 3/8 positives.
I think a trial woild be useful but yes, there's no way Id get treatment here. Mexico perhaps ?

 

[Dufresne]

I think this is important to remember: Doxycycline only hits one form!

I'm pretty sure doxycycline is effective on both spirochete and cell wall deficient forms. Though CWD's are apparently the tougher of the two. And from what I read cysts are a bitch. However cysts don't cause symptoms, so if you can get your numbers of the other two down you should feel a lot better, provided borrelia is your problem. You'll notice in Dr. Horowitz's video he believes most with Lyme have multiple infections. This is where azithromycin and metronidazole are especially helpful. And metro works on cysts. If you can get these down along with the other forms you can actually come off antibiotics some day with a much lesser chance of relapsing. The following is an interesting thread written by a doctor in Maryland who claims great success treating cysts with other drugs, and surprisingly, cell wall inhibitors. Though this is the first time I've read of this.

http://lymemd.blogspot.ca/2011/07/everything-you-thought-you-knew-about.html

 

[xrunner]

Dufresne,

Dr Sapi's study shows that doxy is effective against motile forms only. However, it seems to trigger motile foms to change into cysts whilst it's not effective against biofilm colonies either (In my experience long-term use of tetracyclines will make it worse).
Metronidazole appears affective against all forms but biofilm. Only Tinadozole appears to be effective against all forms including biofilm colonies.
However, this study has limitations as it was conducted in-vitro and I suspect that in-vivo it's a completely different ball game.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
http://www.townsendletter.com/July2010/sapi0710.html

 

[Ema]

Then, really, what is the point in testing. Neither positive or negative results are meaningful. I wish I had saved my $400.

Well, if the test is positive, that's a pretty good sign that there is a Lyme infection that needs treating. It's the indeterminate and negative tests that are open for a lot more clinical interpretation. And the only way to know is to test unfortunately.

But I totally understand your frustration with testing. I have a bunch of supplements I'd like money back from as well as tests!

Are you able to post the positive bands from the IgG Lyme test?