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

[lizw118]

Hi everyone
I have been dealing with CFS for almost twenty years. For some reason I was never tested for lyme until now, and as it turns out I have an active infection. The doctor said my IgM is markedly positive, showing that I have either a reactivated infection or a new infection. I am think it is reactivated and I have had this for a long time (onset of CFS was an illness that I thought was viral).
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?
I am really scared because I know that lyme is hard to treat, especially for those who have had it for a long time. I know I need to go on antibiotics. Which ones are best? Doxycycline? How long should I be on them? I will get my labs from the doctor tomorrow (he faxes lab results). Should I take natural antibiotics? Which ones? If anyone has any info please respond or you can message me. I also need to find a lyme doctor in my area
Thanks
Liz

 

[Esther12]

Hi Liz...

just a quick warning about the number of vaguely alternative doctors who seem to be using unreliable tests for Lyme disease. If the doctor who did this testing is a bit alternative, it could be worth getting the diagnosis confirmed before you begin any treatments. Good luck with everything.

 

[lizw118]

Thanks. The test was the standard one they do at quest labs. Does that sound okay?
Liz

 

[Esther12]

Hi Liz... I had a quick google around Quest Diagnostics, and it looks like they're legit (*sigh* - other than the fraud and incompetence which is an expected part of all medicine!).

One other thing is that it looks unusual to have positive IgM for a long term infection, and that this one band being positive is often seen as a negative result. This really isn't an area where I'm well informed though. If your doctor is competent then hopefully they will be able to give you good advice. I'd advise that it's worth being a bit more cautious and sceptical around Lyme stuff than other conditions, but I know that it's hard to know what's best.

PS: Is Quest Laboratories different to Quest Diagnostics? It could be? Quest Labs could be dodgy, but I couldn't see much:
http://answers.google.com/answers/threadview?id=229399

I'm going to bed now, so can't help further I'm afraid. It could be worth digging a bit more deeply in to this though. Good luck.

 

[ukxmrv]

Hi Liz, I've also had ME for a long time and not had a Lyme test because I've taken AB's regimes before and found that they didn't help my viral and other severe symptoms. After ever long attempt at AB's (and I've tried different ones) I was left weaker and worse off.

I just couldn't tolerate the AB's and none of the advice on the Lyme or other groups helped. There is no evidence to show that Herx is always the problem for why we feel so bad. We just don't know what it is. It may be for some of us that we have a collection of viruses and bacteria and other things and treating the collection may be the best way. Maybe for some of us there are just so many different things that treating one lets the others grow stronger?

Found that I could tolerate doxycycline better with Valtrex and Imuniovr (as an example). For the first time ever after an AB I felt a little better but even this didn't help over the longer term.

For me personally I just stopped testing for "things" as I seem to be positive for them all. I've been trying to concentrate on treatment instead. Looking for other patients trying treatments and comparing notes. There are some people treating Lyme here so hopefully they will be able to advise you better.

 

[lizw118]

Thanks for the replies, everyone. Quest labs is the same as Quest Diagnostics. Sorry I didn't clarify that! I am really confused. I feel like the fact that I came out with an active (re-active, I guess) infection on a not-very-sentitive test (assuming Quest is run-of-the-mill) is not a good sign and maybe I should take ABX. But I also know it's good to be cautious. I also have read other people say what you said, ukxmrv, about taking ABX and not having good luck with it. So what should I do? Take a follow-up test?
Liz

 

[ukxmrv]

Liz, what other tests have you had for common CFS and ME pathogens?

(and any other relevant tests?)

 

[lizw118]

Hi ukxmrv,
I have tested positive for m. pnuemonia, and I know I have EBV and also some herpes viruses (can't remember the numbers). I have not been tested for xmrv yet. I also have a gut infection (dysbiosis). My symptoms definitely do match with an active infection right now (aches in my joints, sore neck muscles, extreme fatigue and dizziness).
Liz

 

[floydguy]

Unless you have some reason not to I'd consider trying Doxy, Tetracycline, etc. for a month or maybe a bit longer - especially if you meet CDC guidelines for Lyme. If it helps, then you know; if it doesn't then you can re-consider at that point. I disagree with Esther's general take: Lyme doc's aren't necessarily "dodgy"; it's a bit like ME in that it's very unclear who has it and what works and what doesn't. Just be aware so called Lyme Literate Medical Doctors have a bias for treating and will often keep you on anti-biotics for years.

I think coming up positive on a Quest test is fairly indicative (but I could certainly be wrong without seeing the actual test). You might get secondary testing through IGENEX or at least Lab Corp.

 

[Ema]

I have a Lyme diagnosis and have been treating with antibiotics for about 9 months now with great success. I am more than happy to share my experience with you keeping in mind that Lyme is tricky and there are probably many *right* ways to treat it.

First though, I think you need more info about your testing. This blurb from anapsid.org describes the antibody testing:

IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.
To recap, depending on the numbers,

• IgM is a sign of a current infection.
• IgG is a sign of a current infection, or of a past exposure to or past infection by the organism.

IgM indicates a recent infection and IgG a chronic, ongoing infection. I would really want to know what bands were positive on the blot and this information should be readily available on your test results.

Is your doctor a LLMD? If not, I would consider looking at the ILADS website or using the doctor finder here:

http://www.lymediseaseassociation.org/

I chose antibiotics for my infection. I had a rough first 2-3 months and then I started making rapid gains. By the fourth month, I was feeling substantially better and out of bed for the first time in years.

The Lyme bacteria can take (at least) 3 forms - the spirochete, the cell wall deficient (or L form) and the cyst form. Doxycycline only hits one form so many doctors are now prescribing a cocktail of antibiotics to keep the bacteria from simply morphing to avoid detection. I take a mixture of cefuroxime, azithromycin and Flagyl and that addresses all form. I also take a crap-ton of probiotics as far away from the antibiotics as possible.

I doubt that the ALA reactivated your infection. I've never heard of an association between the two.

I would also try not to be scared. Lyme is a tricky one but many people are successful at getting the infection under control. But the first thing is to make sure that you actually do have it! Please do consider posting your results when you get them from the doctor...and feel free to ask whatever questions you may have of me!

 

[Esther12]

I disagree with Esther's general take: Lyme doc's aren't necessarily "dodgy"

Just to clear up - I didn't mean to say otherwise. There does seem to be more quackery around Lyme disease than a lot of other diagnoses, but I'm sure there are loads of good and reliable Lyme doctors... it's just an area where I'd advise caution.

 

[Wayne]

I am really scared because I know that lyme is hard to treat, especially for those who have had it for a long time. I know I need to go on antibiotics. Which ones are best? Doxycycline? How long should I be on them? I will get my labs from the doctor tomorrow (he faxes lab results). Should I take natural antibiotics? Which ones? If anyone has any info please respond or you can message me. I also need to find a lyme doctor in my area.

Hi Liz,

I too have been diagnosed with Lyme (over three years ago), and still don't know what the right direction is for me. I've mostly pursued alternative routes so far (Rife, Homeopathy and more), as I'm quite concerned about some of the negative effects of long-term antiobiotic use, especially the possibility of dealing with c-diff. But I do keep open the possibility of doing long-term ABX in the future if my more alternative approach doesn't work out.

There are so many different approaches to Lyme treatment (both conventional and alternative), that it's very difficult to know what to do. The best starting point I would recommend for anybody newly diagnosed would be to read the book entitled, "Insights Into Lyme Disease Treatment". It has 13 different chapters devoted to in-depth descriptions of Lyme treatment (both conventional and/or alternative) by 13 different docotors who specialize in Lyme. The link I provided has a wealth of information, including a sample chapter from the book.

You mention that you are scared of this new diagnosis, which is totally understandable. I think educating yourself as well as you can before starting treatment will help give you the confidence to counter some of the fear associated with a Lyme diagnosis, and confidence in finding a treatment you're most comfortable and compatible with.

All the Best, Wayne

P.S. Ema, good post.

 

[xrunner]

Hi Liz,
You've asked a number of relevant questions. I agree with everything Ema said and that educating yourself can only help you make the right decisions. A good place to start, in my opinion, would be Burrascano's Lyme guidelines and this great video presentation by Dr Horowitz
(first post by Rich).

http://forums.phoenixrising.me/inde...lti-system-infectious-disease-syndrome.17676/

 

[lizw118]

I have a Lyme diagnosis and have been treating with antibiotics for about 9 months now with great success. I am more than happy to share my experience with you keeping in mind that Lyme is tricky and there are probably many *right* ways to treat it.

First though, I think you need more info about your testing. This blurb from anapsid.org describes the antibody testing:

IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.
To recap, depending on the numbers,

• IgM is a sign of a current infection.
• IgG is a sign of a current infection, or of a past exposure to or past infection by the organism.

IgM indicates a recent infection and IgG a chronic, ongoing infection. I would really want to know what bands were positive on the blot and this information should be readily available on your test results.


Is your doctor a LLMD? If not, I would consider looking at the ILADS website or using the doctor finder here:

http://www.lymediseaseassociation.org/

I chose antibiotics for my infection. I had a rough first 2-3 months and then I started making rapid gains. By the fourth month, I was feeling substantially better and out of bed for the first time in years.

The Lyme bacteria can take (at least) 3 forms - the spirochete, the cell wall deficient (or L form) and the cyst form. Doxycycline only hits one form so many doctors are now prescribing a cocktail of antibiotics to keep the bacteria from simply morphing to avoid detection. I take a mixture of cefuroxime, azithromycin and Flagyl and that addresses all form. I also take a crap-ton of probiotics as far away from the antibiotics as possible.

I doubt that the ALA reactivated your infection. I've never heard of an association between the two.

I would also try not to be scared. Lyme is a tricky one but many people are successful at getting the infection under control. But the first thing is to make sure that you actually do have it! Please do consider posting your results when you get them from the doctor...and feel free to ask whatever questions you may have of me!

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

 

[lizw118]

Unless you have some reason not to I'd consider trying Doxy, Tetracycline, etc. for a month or maybe a bit longer - especially if you meet CDC guidelines for Lyme. If it helps, then you know; if it doesn't then you can re-consider at that point. I disagree with Esther's general take: Lyme doc's aren't necessarily "dodgy"; it's a bit like ME in that it's very unclear who has it and what works and what doesn't. Just be aware so called Lyme Literate Medical Doctors have a bias for treating and will often keep you on anti-biotics for years.

I think coming up positive on a Quest test is fairly indicative (but I could certainly be wrong without seeing the actual test). You might get secondary testing through IGENEX or at least Lab Corp.

Hi Floydguy,
Thanks for the reply
I just posted my test results above. Have a look and see what you think.
Liz

 

[lizw118]

Hi Liz,

I too have been diagnosed with Lyme (over three years ago), and still don't know what the right direction is for me. I've mostly pursued alternative routes so far (Rife, Homeopathy and more), as I'm quite concerned about some of the negative effects of long-term antiobiotic use, especially the possibility of dealing with c-diff. But I do keep open the possibility of doing long-term ABX in the future if my more alternative approach doesn't work out.

There are so many different approaches to Lyme treatment (both conventional and alternative), that it's very difficult to know what to do. The best starting point I would recommend for anybody newly diagnosed would be to read the book entitled, "Insights Into Lyme Disease Treatment". It has 13 different chapters devoted to in-depth descriptions of Lyme treatment (both conventional and/or alternative) by 13 different docotors who specialize in Lyme. The link I provided has a wealth of information, including a sample chapter from the book.

You mention that you are scared of this new diagnosis, which is totally understandable. I think educating yourself as well as you can before starting treatment will help give you the confidence to counter some of the fear associated with a Lyme diagnosis, and confidence in finding a treatment you're most comfortable and compatible with.

All the Best, Wayne

P.S. Ema, good post.

Wow I didn't know about the C. Diff thing. Ugh. I wonder if loading up on probiotics would help. I already have dysbiosis of d-lactate producing bacteria in my upper intestine.
Did you have lyme diagnosed when it was an active infection or when it was already IgG?
I am going to check out the link you provided, thanks
Liz

 

[lizw118]

Hi Liz,
You've asked a number of relevant questions. I agree with everything Ema said and that educating yourself can only help you make the right decisions. A good place to start, in my opinion, would be Burrascano's Lyme guidelines and this great video presentation by Dr Horowitz
(first post by Rich).

http://forums.phoenixrising.me/inde...lti-system-infectious-disease-syndrome.17676/

Thanks, Xrunner. I will check this out.
Liz

 

[Sushi]

from Ema:

The Lyme bacteria can take (at least) 3 forms - the spirochete, the cell wall deficient (or L form) and the cyst form. Doxycycline only hits one form so many doctors are now prescribing a cocktail of antibiotics to keep the bacteria from simply morphing to avoid detection. I take a mixture of cefuroxime, azithromycin and Flagyl and that addresses all form. I also take a crap-ton of probiotics as far away from the antibiotics as possible.

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

And also what xrunner said:

​

A good place to start, in my opinion, would be Burrascano's Lyme guidelines and this great video presentation by Dr Horowitz (first post by Rich). ​

http://forums.phoenixrising.me/inde...lti-system-infectious-disease-syndrome.17676/​

​

I have heard that Burrascano's guidelines are some of the latest.​

This is a treatment area where a lot of research is really worth it!​

Best wishes,​

Sushi​

 

[lizw118]

from Ema:



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

And also what xrunner said:

​

​

I have heard that Burrascano's guidelines are some of the latest.​

This is a treatment area where a lot of research is really worth it!​

Best wishes,​

Sushi​

So then is the answer to go on a mix of antibiotics asap or to do something else entirely? It's so confusing.
Rats the video won't load! I'll do a search and see if Burrascano's guidelines are listed somewhere
Thanks Sushi

 

[xrunner]

You're welcome.

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 usually start first with probiotics (Dr Horowitz suggests hundreds of billions of live organisms and I agree) a week or more ahead of the antibiotics. I used to take two doses of VSL 3, two of Therbiotic complete, two of S, boulardii plus Kefir just to give you an idea of how "paranoid" I'm about my gut (which fortunately has never been a big issue for me) taken 3-4 hours away from the abx. I usually continued for several weeks after I ended the abx.
As for the abx, I started with Doxy at 100mg bid then after two weeks upped to 200mg bid. if I had to start all over I wouldn't as I later found Minocycline much more effective.
In addition, persisting with tetracyclines for too long (I think it takes as little as a couple of weeks) will cause Bb to encyst and/or switch to biofilm forms.
There's a study done by Dr Eva Sapi who compared the in-vitro effectiveness of various antibiotics and antimicrobial herbs such as Samento and Banderol showing how Doxy can cause an increase in biofilm. Biofilm will make any infection more difficult to eradicate.
Dr Horowitz's presentation has a very helpful slide on combos of antibiotics used to target Bb in all its forms.
I also wouldn't overlook parasites and co-infections that usually accompany Bb infections.