Igenex Results- More ?s than answers

[amyid]

Well…my story is long, but I will try and make this short. I was dx with RA in 3/08 after years of “weird” health issues which culminated in me having extremely painful and stiff joints and fatigue. Found a rheumy, didn't like her meds, found RBFBB and AP and had a eureka moment! Went to see Dr. S in IA. Received IV treatments and improved significantly. Found a DR close to me who was willing to administer my Clindy IV's when necessary though he wasn't familiar with AP– though he did speak to Dr. S and do some research on his own that lead him to conclude I was on the best path. Did another series and a few monthly follow ups of Clindy up to last March with great health until April then I went off all meds due to gallbladder issues and had a MAJOR return of symptoms starting 2 weeks after surgery in May. Good news…back on mino and gallbladder/digestive issues GONE…bad news…joint pain, stiffness and burning and fatigue are back with a vengance!

Fast forward to present…needing more IVs, I went back to my local DR to find he has been studying with other Drs and Igenex to become more literate in diagnosing and treating Lyme patients. He suspected with how quickly I “recover” with abx and IVs I may have Lyme. He gave me the Igenex questionaire and further decided I should be tested.

I did the Western blot IgM and IgG testing as well as co-infection panel. He is out of the office this week, but the nurse let me see the results. So, I have some info, but no understanding! My appointment to discuss things with him isn't until 9/7 so any help in translating would be helpful. ( I am giving you info I scribbled down in a hurry- I don't have a copy of the results yet)

First according to the western blot and CDC evaluation criteria I am negative! However I was **suspicious in 7 or 8 strands and positive on the IgM strand 41 and 25. In the IgG I was IND (indetermindate?) on 41 and **suspicious on numerous others)

I was 1:20 for babesia which apparently suggests a possibility of infection but babesia FISH was negative . So I am neg for babesia, right?

another co-infection was that same 1:20 result on the IgM and IgG…that indicates a possibility of infection??? What is that??? It was the monocystic something???

Sorry/…I know this is sketchy without the actual results …but any clue in would help! I am thinking this all means I don't have lyme righT?

Thanks for any input…I will keep you updated

Amy
:doh:

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

I did the Western blot IgM and IgG testing as well as co-infection panel. He is out of the office this week, but the nurse let me see the results. So, I have some info, but no understanding! My appointment to discuss things with him isn't until 9/7 so any help in translating would be helpful. ( I am giving you info I scribbled down in a hurry- I don't have a copy of the results yet)

First according to the western blot and CDC evaluation criteria I am negative! However I was **suspicious in 7 or 8 strands and positive on the IgM strand 41 and 25. In the IgG I was IND (indetermindate?) on 41 and **suspicious on numerous others)

I was 1:20 for babesia which apparently suggests a possibility of infection but babesia FISH was negative . So I am neg for babesia, right?

another co-infection was that same 1:20 result on the IgM and IgG…that indicates a possibility of infection??? What is that??? It was the monocystic something???

 

Hi Amy,

Great to hear your doc is training up to be a LLMD…sounds like you're in great hands to have such an open physician helping you! 🙂

Basically, the CDC negative result is meaningless, which is why IGeneX is used. If a person tests positive on the standard CDC test (5 bands positive), then there isn't any need to do IGeneX, as it's clear the person has Lyme. Thing is, only 50% of folk with actual Lyme disease (myself included, as I had known tick bites and EM rashes) won't test CDC positive. Why? Lots of reasons that I won't bore you with now, but bascially some of the sickest amongst us will test negative in spite of having Lyme, because this set of infections is so highly immune-suppressive. As the Western Blot test is an antibody test, the body just can't mount enough of an immune response to produce enough antibody to test. This is why IND (indeterminate) readings on significant (double-starred) bands on the IGeneX test are considered so important…in effect, if there is a bit of antibody showing, then it's significant…as Kim would say, you can't be a “little bit pregnant.”

Some of these antibody bands are just so specific to Lyme, they really can't be due to anything else. Others may be cross-reactive with viruses or other infections…and Band 41 as a standalone band, although significant in that it is picking up the protein of the flagella (tail) of the spirochete, there are questions that it may be cross-reactive, too, with other spirochetal infections, such as H Pylori, oral spirochetes, syphilis, etc. Together with other significant bands, however, it's considered quite important and is usually the first band to show positive on most people's labs who do have Lyme. It can take years for some folk to mount enough of an antibody response to show a full positive for Lyme, by which time the person is pretty chronically (sadly) ill.

If you can, ask the nurse to fax you a copy of the results of both your IgM and IgG results on the western blot and also the coinfection testing you had done. We can share some links with you to help you interpret your results when you know which bands you were showing some sensitivity on.

The only thing I can think the “monocystic something” may be is the coinfection, HGE or human granulocytic erhlichiosis (aka anaplasmosis). These are intracellular bacteria that infect the white blood cells….leukopenia (low WBC) can sometimes occur with this infection, as well as a myriad of other symptoms, like fever, headache, chills, muscle aches that are very flu-like. It's a pretty common coinfection of Lyme in WI and MN. You can read a bit more about it here:

http://extension.entm.purdue.edu/publichealth/diseases/tick/anaplasmosis.html

Lymeinfo.net also has loads of info and links on Lyme and coinfections you can browse here:

http://www.lymeinfo.net/coinfections.html

The coinfection tests are pretty crappy, too, so really Lyme must be a clinical diagnosis, based on patient history and symptoms, and a work-up with a Lyme-knowledgable physician…sounds like your doc may be the man.

Let us know your results when you get them through, Amy. There are quite a few of us here who have been through the process and who may be able to help untangle some of your most burning questions.

Peace, Maz

[amyid]

MAZ wrote:

Some of these antibody bands are just so specific to Lyme, they really can't be due to anything else. Others may be cross-reactive with viruses or other infections…and Band 41 as a standalone band, although significant in that it is picking up the protein of the flagella (tail) of the spirochete, there are questions that it may be cross-reactive, too, with other spirochetal infections, such as H Pylori, oral spirochetes, syphilis, etc. Together with other significant bands, however, it's considered quite important and is usually the first band to show positive on most people's labs who do have Lyme. It can take years for some folk to mount enough of an antibody response to show a full positive for Lyme, by which time the person is pretty chronically (sadly) ill.

Does that mean if I am positive on 41 and only had the ** on a five or six strands on the IgG …and a several strands of ** and one + on #23 or 25( I think) on the IgM I most likely have another type of infection like H. Pylori ?

I wasn't supposed to see the results (I suspect) until the Dr. gets back in (for this very reason- me being nervous and confused) so I doubt they will fax me the results, but I will ask.

The 41 being a possible cross-reactor bothers me. I have been tested for H. Pylori 2 or three years ago and it was neg. …but am wondering. I always seem to have the “craziest” scenario seem to be the issue.

I am wondering if Lyme is a red-herring in my situation. I recall Dr. S didn't even think it was worth testing for . I wonder if my constant strep infections somehow caused the mycoplasma infections that are manifesting as my RA??? I am not even close to as versed in the infectious theories as you are, Maz. I am just overwhelmed and confused. Hopefully answers from my DR will come soon.

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

Does that mean if I am positive on 41 and only had the ** on a five or six strands on the IgG …and a several strands of ** and one + on #23 or 25( I think) on the IgM I most likely have another type of infection like H. Pylori ?

The 41 being a possible cross-reactor bothers me. I have been tested for H. Pylori 2 or three years ago and it was neg. …but am wondering. I always seem to have the “craziest” scenario seem to be the issue.

I am wondering if Lyme is a red-herring in my situation. I recall Dr. S didn't even think it was worth testing for . I wonder if my constant strep infections somehow caused the mycoplasma infections that are manifesting as my RA??? I am not even close to as versed in the infectious theories as you are, Maz. I am just overwhelmed and confused. Hopefully answers from my DR will come soon.

Hi Amy,

It's okay…this stuff is confusing! It's bad enough that folk have to deal with chronic Lyme, let alone the politics surrounding it and having to locate physicians willing to treat it. :doh:

The “bands” on the test are each specific to certain proteins expressed by borrelia spirochetes. So, what these bands are picking up on is your antibody response to these foreign proteins. The double-stars on the test just mean they are very specific to borreliosis. So, when you get your results, it is the – or + or IND signs that you will want to look for beside the **bands….although the bands that are not double-starred are also important, too, just not as specific.

Band 41 is a double-starred band, but it is thought to also cross-react with other types of spirochetal infections. If a person is showing some sensitivity (even IND readings) on 5 or 6 of the ** antibody bands, then it is very likely Lyme disease. To give you an idea…I tested IGeneX positive on IgG with Bands 39 and 41 positive and and IND on 23-25. I had two Lyme rashes = Lyme disease, but both my standard tests returned equivocal and, therefore, not even considered by my GP for treatment. Unfortunately, he was ill-informed as EM rashes are unequivocally Lyme, regardless of what any labs say. To my detriment, I discovered this too late and, had I received treatment when my doc saw my EM rashes, I may have averted all-out RA, according to my LLMD. He believes I was directly harmed by my GP. In fact, my IGeneX results were pretty classic (except that my results were IgG positive), according to Brenner, who says:

http://www.lymenet.de/labtests/brenner.htm

1. “the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa, [/*:2ge0jpzy]
2. followed by the OspC band and/or the one at 39.” [/*:2ge0jpzy]

Band 23-25 is a double-starred band and is specific to “Outer Surface Protein C” of borreliosis…this is highly significant! So, together with a positive band 41, you're probably looking Lyme in the face, just with those two….add in the 5 or 6 other IND bands and any LLMD would likely look at that as pretty definitive for Lyme.

As lovely as Dr. S is, as a very experienced AP physician, unfortunately, he is not Lyme Literate. The treatments for Lyme disease are very different from Dr. Brown's low dose AP, which is generally a monotherapy with one of the tetras. LLMDs use abx combinations in doses that are usually higher (there can be variability with dosing if herxing is too much) and, when pulses are used, they are not intermittant, every other day pulses, but longer pulses. The purpose of this is to (a) trick borreliosis out of its pleomorphic forms and (b) also hit as many coinfections as possible. For instance, I am currently on daily Mepron (5ml BID) and Zith (250mg BID) for 4 weeks with 2 week washouts. This is really the reason that we suggest that anyone suspecting Lyme or living in a Lyme endemic area get tested as early as possible when choosing antibiotic therapy, because longterm outcomes may depend upon treatment path. The coinfections of Lyme can keep rheumatic patients sick and LLMDs are experts in clinically diagnosing patients by symptoms and blood anomalies alone, using the full antibiotic arsenal at their disposal to get us well again. An experienced LLMD would likely agree that it is far better to treat suspected infections with therapeutic probes to gauge response than to leave possible coinfections untreated.

If this helps, Amy, it might be worth printing out both the Burrascano treatment guidelines and the ILADs treatment guidelines to get a fuller picture of the types of treatments LLMDs use for chronic Lyme. It's not that mycoplasma aren't important in this scenario…they are most definitely known coinfections of Lyme (e.g. mycoplasma fermentens), but their treatment is but one part of a whole treatment plan designed to the individual's own complex mix of infections…some of which are tickborne and some of which may be re-activated latent infections (like strep or the chlamydias, viruses, like EBV and CMV and candida, etc) due to the immune-suppression caused by Lyme & friends.

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

It may be superfluous at this point to speculate on anything until you have your results in hand, but it should be worth reading over the above links to get an idea of the differences in AP and Lyme treatments and why seeing an LLMD is quite important should one get a diagnosis of Lyme (clinically dx'd or by labs).

Hope something here helps, Amy, and do hope I haven't confused the issue for you further! If you do get a dx of Lyme, just take some deep breaths…it's not a race with chronic Lyme, but a slow process of wending our way through the process of getting informed as possible and then setting about targeting the offending infections with the help of a knowledgable physician. In some cases, it can take as long to reverse Lyme as one has had it…and sometimes we just don't know when we got it. 😕

Peace, Maz

[nspiker]

Amy wrote:

I was 1:20 for babesia which apparently suggests a possibility of infection but babesia FISH was negative . So I am neg for babesia, right?

I was 1:20 for babesia, which is considered equivocal.  My LLMD is currently treating me for babesia, and I have improved. 

What are your symptoms?  If you have symptoms that are consistent with babesia, your test will support treatment.

I was Igenex negative for lyme and only positive on band 41, and am being treated for lyme/babesia.  Ultimately, it's a clinical diagnosis.

If you can get copies of your results, post them and we will help you interpret.  Believe me, those of us that have been down this road, totally get how overwhelming and confusing this all can be…
nancy

[Okie Tam]

I just have to say that I learn so much from the people on the site. I'm going through this same exercise and am very interested in the Lyme diagnosis and all threads related. Just got my positive results back a few weeks ago and yesterday, dropped off the FedEx for both my daughter and neighbor to IGenex.

I know there is a solution and without the help of the many wonderful moderators and contributors sharing their experiences here I wouldn't know where to turn.  I want to say thank you to each and every one of you for giving me, and many others, one more avenue to explore since AP doesn't seem to be the totally cure for some of us. There are angels out there. (Yes Maz, you are at the top of my angel list).

Kindest regards,
Tammy

[m.]

Hi amyid,

I noticed you mentioned strep. Were you ever treated for a stealth strep infection, y'know, low dose pulsing antibiotics like amoxicillin?

When I had my original mycoplasma and chlamydia testing done through The Arthritis Research Center, http://www.tarci.net, I also had the strep test done through there too.

My MD explained that if I came up positive for strep, it would require another antibiotic other than Doxy. He also explained that treating for the strep was essential to see progress with the mycoplasma.

[amyid]

OK- Maz, I phoned the clinic today and the nurse told me the following

On Lyme IgM test: I was + on band 31 (only one +)and IND on band 41
On Lyme IgG test : I was – on all bands but + on band 41

Babesia was 1:20 but neg on Babesia FISH

Erlichiosis (sp/) Monocytic was 1:20 on IgM and 1:80 on IgG and Erlichiosis Granulitic was negative

Bartonella was 1:20 IgM

Now I can use your Magic Maz Decoder Abilities…Bless you for your help and patience…

And a big thanks to all who have helped.

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

OK- Maz, I phoned the clinic today and the nurse told me the following

On Lyme IgM test: I was + on band 31 (only one +)and IND on band 41
On Lyme IgG test : I was – on all bands but + on band 41

Babesia was 1:20 but neg on Babesia FISH

Erlichiosis (sp/) Monocytic was 1:20 on IgM and 1:80 on IgG and Erlichiosis Granulitic was negative

Bartonella was 1:20 IgM

Oh, Amy…please don't put too much confidence in my interpretation! I'm just a patient, too, and this is a very puzzling business. I am just someone who likes to follow dots and make connections, but what you need is an expert LLMD to look at your complete picture…Lyme really is a clinical diagnosis and tests are just a nice confirmation, if positive, but don't rule out a dx, if negative, either.

That said…I'm really confused now! :blush: Maybe you'll be better placed to clarify when you have your hard copy in hand. Above you mentioned showing some sensitivity on 7 or 8 bands (meaning IND?) and positive on Bands 23-25 and 41.

You wrote:

“First according to the western blot and CDC evaluation criteria I am negative! However I was **suspicious in 7 or 8 strands and positive on the IgM strand 41 and 25. In the IgG I was IND (indetermindate?) on 41 and **suspicious on numerous others)”

Does this mean the nurse gave you the wrong info initially? I'm wondering, because until you see the hard copy, she may have only given you partial results. Quite a few docs (and nurses) don't really know how to interpret these results.

Going by what you said above, i.e. “On Lyme IgM test: I was + on band 31 (only one +)and IND on band 41 On Lyme IgG test : I was – on all bands but + on band 41”, this changes the picture slightly, as you're only showing sensitivity on 2 bands total. This doesn't mean you don't have Lyme…on the contrary, because Band 31 is highly specific for Lyme…just that you aren't showing as much antibody as originally thought. 😉

Getting a positive read on Band 31 is pretty significant. It's the band related to Outer Surface Protein A of the borrelia spirochete. This band is not in the standard test as it was removed when they were creating the LymeRix vaccine (along with Band 34). In other words, this particular protein was considered pretty important – so important that they used it to create a universal vaccine and they didn't want any cross-reactivity with anyone receiving the vaccine and Lyme tests. Most startlingly, they later had to remove LymeRix from the market because it was causing all sorts of AI problems in people receiving it, including RA, and particularly in those with HLA genetic haplotypes.  Yet, when they pulled the vaccine, they never replaced Bands 31 & 34 to the standard tests arguing that the band was statistically insignificant, but meaning that some of the sickest folk with Lyme may never be identified….quite the irony, eh? Worth reading the article below and also watching Dr. H. (respected LLMD) speaking to this issue in the following video:

http://www.vaccinationnews.com/DailyNews/August2001/LymeVaxLinkedAutoImmArth.htm

http://www.youtube.com/watch?v=OIsj9IgyP_I

So, yes…although I am no doctor, my best bet is that it still looks like Lyme, but if you wanted to be more sure in your own mind, you could ask your doc for further etiope testing on Band 31 thru IGeneX. They store the blood for a month of two, so would just entail faxing the order through to them on your behalf. This is a confirmation test that basically would leave no questions in your mind about a Lyme dx.

This further link by Dr C, Kim's LLMD in MO, should also help you interpret your results and the meaning of these tests in general. It's his position that even one band positive is significant in and of itself, as a person wouldn't be producing antibody if there was nothing there to respond to.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

Amy, I never had the coinfection testing done thru IGeneX or any lab, because I was actually IGeneX positive for Lyme and my LLMD feels that the coinfection tests are dodgy at best. He diagnoses coinfections based on lab anomalies (e.g. in blood counts) and symptoms. So, I'm not entirely sure what the reference ranges are with IGeneX labs for the coinfection panels and I'd have to see the actual hard copy. Aside from this, there are now known to be 26 strains of bartonella and numerous other strains of babesia, including b. microti and b. duncani (two of the most common), so I'm not sure which you were tested for in this regard. As Nancy mentioned, she was told a 1:20 reading was equivocal…so there is something there, even if not a definitive positive, and probably worth treating, rather than leaving untreated in that sort of instance – these coinfections can and do keep us sick. The 1:80 Monocytic ehrlichiosis (aka Ehrlichia chaffeensis) reading makes sense, given your location in the US, as HME and HGE seem to be pretty common in your neck of the woods.

This may interest you….I've spoken to a number of folk who tested completely negative on IGeneX labs….but they tested highly positive for coinfections, like babesia. Two ladies in particular…one in MA with RA who'd been on AP since the early 90s with Dr. S in Iowa (swift onset RA after what her GP told her was a spider bite) and relapsed a couple years ago very badly. After treating the babesia through an LLMD in NYC, she quickly moved back into remission (and didn't need the knee replacement she feared). The other lady, in TX, was also completely negative on IGeneX WB, but highly positive for babesia. She was seeing Dr K in Lufkin, TX. She got treatment for the babesia, but remained very unwell with RA until she switched to a LLMD who diagnosed Rocky Mtn Spotted Fever. Within a very short space of a couple months (recently), the last we spoke, she was very close to remission. My intention in mentioning this is that where there are coinfections, then regardless of what the WB may say, a person may still have borreliosis. The first lady in MA had Lyme, because she said she had an EM rash (had always struggled with anemia which is typical of babesia), but it may well be that due to cancer treatments she just wasn't producing enough antibody or she'd been on AP so long, she'd beaten back the Lyme, but just hadn't addressed the babesia. The second lady in TX likely didn't have borreliosis, but she did have Rocky Mtn Spotted Fever, another tickborne illness that is very Lyme-like in symptoms.

So, the picture can be quite complicated with Lyme disease (meaning the whole mess of infections that includes borreliosis and its tickborne associated infections). This is why LLMDs consider these double-starred bands to be quite significant if some antibody is showing up.

I hope this helps and doesn't confuse further, Amy!!! You must be itching to get your hard copy results and I know it's hard figuring out results given over the phone…no worries…I'm really just questioning if the nurse really gave you the full picture or not?

Peace, Maz

[amyid]

Oh Maz, you help a lot! And I do realize you are not giving a diagnosis….just passing on your (vast) knowledge…which is so appreciated.

The nurse told me the first day that the double asterisks were suspicious. However, today she told me she was mistaken. The ** mean significant strands. The last info I posted is accurate. I am negative on all strands in the IgM EXCEPT 31 which I had one +. and on strand 41 where it was stated as IND. On the IgG, I was negative on all strands, but 41, which I tested positive with one +.

Soooo…..I guess it will be up to my Dr. to use his clinical dx along with advice from the Drs. he is working with on studying to be Lyme Literate to see if that is my issue.

I am thinking Lyme is a factor. Would all the IV antibiotics I have been on make the tests show less antibodies, or would it have the opposite effects (I read about abx killing them and therefore making them more detectable)??

Thanks again for sharing your wealth of knowledge and understanding!

All the best,
Amy

ALSO–
m. — Thanks for the info on further mycoplasma testing. Dr. S did tests on me in Ida Grove. Tested positive for one. Not sure about the specific strep…will look into it.

nspiker—Thanks for sharing your lyme results/info. Glad treatment is helping you. I am anxious to talk to my doctor.

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

Soooo…..I guess it will be up to my Dr. to use his clinical dx along with advice from the Drs. he is working with on studying to be Lyme Literate to see if that is my issue.

I am thinking Lyme is a factor. Would all the IV antibiotics I have been on make the tests show less antibodies, or would it have the opposite effects (I read about abx killing them and therefore making them more detectable)??

Hi Amy,

Yes, I think your doc (Dr. F?) has been training under Dr. R in NYC? Is that right? If so, you should be in good hands. 🙂

With the Tribeca “Under Our Skin” video link above with Dr. H speaking about Lyme, he discusses the whole testing fiasco, about a third of the way in and also at about the 27 min mark…the info he provides on testing is really pertinent to all your questions, so should help more than anything I could say, as just a fellow patient.

You know, the jury is out with me whether or not prior abx therapy, whether IV or oral, may make antibodies less remarkable on tests (probably so, but Lyme is also a waxing/waning illness) and, to be honest, I don't think even the experts know. Quite a bit probably has to do with immune function and how compromised the infections have made it. If you listen to Dr. H, though, he discusses the cystic form of Lyme. This is the dormant form and what is believed to cause persistence in chronic Lyme (in addition to bio-films). When spirochetes are under attack, they protect themselves by literally turning inside out, into these cystic forms. Spirochetes have all kinds of outer surface proteins aka OSPs (hence, what is tested on the western blot), but when the spirochete reverts to cystic form, these OSPs are greatly diminished and so the immune system is unable to pick anything up or produce any antibody to go after the bugs. But the cysts are still emitting “blebs” – fragments or toxins – which the immune system is picking up and going after, so they are acting like decoys, in a sense. Talk about stealth pathogens, eh? These cystic forms are also believed to account for the sometimes long latent stage of Lyme…that is, someone being infected years or decades before symptoms arise. So, is the bug really gone just because a western blot is showing fewer antibodies? Not likely, unless adequate cyst-busting and bio-film meds and supps are being used, too. The goal is to push the infections back and strengthen immune function enough to take care of anything left behind. Here's a short YouTube video showing how spirochetes quickly revert to these cysts…it's a vertible cloaking system:

http://www.youtube.com/watch?v=lVmCa70bAxE

The thing about borrelia cysts is that there is research out there showing that the longer the assault is kept up on the cystic pleomorphic form, the less likely it is to revert back to spirochete – older cystic forms just tend to be less likely to revert. So, in some respects, this is probably good news. Do short term bursts of IVs help Lyme in this regard? Well, maybe yes and maybe no….yes, in that clindy in a 5-day series probably pushes spirochetes (and also treats babesiosis) back into cystic form…but these are then young cysts…so they may well be more likely to revert back to their spiral forms more readily. That said, people on AP are also on orals, so the assault is kept up. It's just that for those on low, intermittant pulsed doses may not be hitting Lyme hard enough to push it back entirely over the longer term. That said…no one really knows the answers to any of this…some folk with less virulent strains of borrelia probably do really well on AP and never knew they had Lyme all along. Others who relapse and struggle probably should look into the Lyme question as combination orals may be needed. Again…all surmise on my part, but it's interesting that it fits with the info on the main site about “plateaus in progress.”

None of this is a perfect science yet, Amy…I think this is probably the biggest problem. The politics of Lyme is resulting in suppression of new research. Right now, possibly the best research is coming from abroad where the politics is not getting in the way as much.

Peace, Maz

PS In the RBF Fall 08 edition of the eBulletin, you'll find a couple of studies in the Research and Articles of Note section about the chronic persistence and cystic forms of Lyme:

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

Persistence of Lyme Organism Following Antibiotic Treatment in Mice

On March 3rd, 2008, the Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis published a significant study demonstrating the persistence of Borrelia burgdorferi in collagen-rich tissues of infected mice with both early and late stage infection following treatment with the antibiotic ceftriaxone for one month.

Source: http://aac.asm.org/cgi/content/abstract/AAC.01050-07v1

More Evidence to Support the Persistence of Lyme Disease

On September 25th, 2008, a new study was published, demonstrating the persistent, pleomorphic nature of Borrelia burgdorferi found in cases of patients with neurological Lyme disease.

Source: http://www.jneuroinflammation.com/content/5/1/40

 

[Parisa]

Amy,

My husband tested negative on the babesia test but we went with the clinical diagnosis based on symptoms.  My husband made the most recovery on babesia meds.  This is a roundabout way of saying that the testing isn't great and treating according to response to medication can sometimes bring about great response.

[Author]

Posts