Frustrated with Lyme results

[laurawm]

Hi everyone,

Feeling frustrated as my Igenex Lyme results were all negative except band 41kDa which is not a positive result but Igenex suggests retesting or using different testing methods (back to the Neuroscience test at $800-1100 out of pocket!?) in 4-6 weeks with a one positive band result. My son’s IGG/IGM test came back normal/negative despite the knee issue he had plus waking up crying to the point of me having to sleep with him from hip pain during this same time. On both of us I see faint rashes. On me, I directly see faint bulls eye rashes where I am having pain/swelling, even outside my joints. I am also losing large handfuls of hair everyday when I shower – this is not normal for me. I was doing fairly well before I got that bite in May. Now I am doing as bad or worse than ever (though I am pushing my mino dose as hard as I can possibly tolerate) I did the Igenex test because the Neuroscience test was done so early (2 weeks) after the bite and the results showed an early infection that was not 100% conclusive Lyme. Tired of all of this. Not sure what my questions are, but any feedback is welcome.

Thanks,
Laura

[cavalier]

Not much i can say other than i am frustrated for you & with you Laura – some things are just not always black & white. Just do the best you can which sounds so trite i dont mean it that way but pray for us to be guided in wisdom – some things we just have to keep on plugging on til we can get some breakthrus – not easy though for sure.

Hugs – Jill

[lynnie_sydney]

Laura
Most LLMD’s treat based on a clinical diagnosis and will certainly treat if there is any sign of a bullseye rash, I believe. Do you have an LLMD?

Also, dont know whether this will help any, it’s from an interview with Klinghardt on the Mercola site.

Tests and Lab Recommendations

Dr. Klinghardt exclusively uses the IGeneX Lab in Palo Alto for his blood tests, and Fry Labs in Arizona for direct microscopy testing.

“I don’t have a financial investment in it, but it’s the gold standard in our field,” he says. “They use two different antigens. The commercial labs and hospitals and so forth, they use one antigen and are notorious in under-diagnosing Lyme disease. We recommend to rather not test it than get a false negative, which will sometimes lead the patient 20 years on the wrong track. With the other co-infections, the detection rate drops way down.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Eileen]

Hi Laura,

Only a second to write: get pics. of the rashes on your body — good pictures.

Eileen

[Maz]

Laura, I’m with Lynnie and Eileen on this…be sure to take pics of any rashes on the body. Bulls-eye rashes are definitive for Lyme regardless of any test. I had two bulls-eye rashes and negative standard ELISA’s twice, which is why my GP delayed treatment and I got so sick. If we had treated at first sight of the bulls-eyes I may have avoided all this mess with RA. Sometimes the rashes aren’t classic, but take pictures anyway. A good LLMD should be well-versed in identifying what a rash signifies and differential dx’s (e.g. spider bites).

Physicians, in general, are misinformed and many are just too scared to touch Lyme without positive testing and, even then, will refuse treatment beyond 2 to 4 weeks of doxy. When I finally got doxy (about 7 weeks after my rashes first appeared by which time I was horribly sick), it was given to me for a chest infection and my GP said flippantly, “Well, if you ever had Lyme, it will be cured with this two weeks of doxy.” WRONG…the guy was so misinformed and so off with even the IDSA/CDC treatment guidelines (e.g. bulls-eye = Lyme regardless of any test), that I fired him.

Also, be sure to take note of Dr. K’s comments above about the CD57 test for NK cells that Lynnie posted. This test was devised for patients who are so immune-compromised by Lyme that they can’t produce enough antibody for any test – standard or even more sensitive testing. Remember, antibody tests, such as the western blot and ELISA are indirect assays…they are not testing for the bug, which is highly pleomorphic and doesn’t stay in the blood stream for long….they are testing for antibodies. As Lyme drills very quickly out of the blood stream and deep into tissues, also swiftly changing up its forms (cell-walled, to cell-wall-deficient, to cystic, etc), it’s outer surface proteins (antigens) also change up quickly to elude immune-surveillance. This means that our bodies may not have time to produce enough antibody to test (antibodies produced in response to bug antigens) and so we either don’t have enough antibody or not the right kind in response to the changed outer surface proteins for the test.

This recent study out of UC Davis, CA, describes how borrelia goes quickly into the lymphatic system and literally hijacks immune cells:

http://www.news.ucdavis.edu/search/news_detail.lasso?id=9922

These are just some of the reasons why no Lyme test is 100% accurate for the disease…as Lynnie commented above, it must be a clinical diagnosis, based on patient history of past ticks exposures, living/visiting Lyme endemic regions, symptoms, total lab picture, etc….not forgetting that sometimes ticks also pass other TBDs (tickborne diseases) that a basic western blot will not show.

Reading the ILADs diagnostic and treatment guidelines should provide a really good basis for understanding all this before diving into paying out of pocket for a LLMD. It’s important to get really informed about all this before deciding that visiting a LLMD is right for you, as it’s an investment in time, finances, etc., and treatments can go on for years depending upon disease severity and all kinds of other extraneous factors, such as age, state of immunity, mode of treatment approach, etc. Really what it comes down to is that no one can convince anyone that this is the treatment path to take. We must all get informed and then decide for ourselves if this makes the best sense or not. 😉 I have heard chronic Lyme patients calling themselves, “Lyme warriors,” because not only are they fighting the disease, they are swimming upstream against conventional medical treatment guidelines that states that the chronic form doesn’t exist, and this requires the patient to have some amount of knowledge about what they’re up against as well as some amount of will and determination….not a very easy thing to do when so sick. 😥

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

[laurawm]

Thanks everyone – I will take more pictures (have a few from early on) and continue to pursue alternate testing. It’s difficult when one’s family does not believe in the treatment or disease. My husband is supportive, but the rest of my family thinks I should do traditional RA treatment and does not believe I have Lyme. I know they just want me to feel better and do not know a great deal about either Lyme or RA, but it is still frustrating, especially when feeling so sick and needing as much support as possible.

Thanks again,
Laura

[Maz]

@laurawm wrote:

It’s difficult when one’s family does not believe in the treatment or disease. My husband is supportive, but the rest of my family thinks I should do traditional RA treatment and does not believe I have Lyme.

So sorry to hear this, Laura. It sure does make it harder. 🙁 If this helps, though, knowledge really is power in this kind of situation, so the more you get educated about this to self-advocate, the stronger you will feel and more invested in your treatment choice so that other peoples’ (often uninformed) opinions won’t color your decision-making process quite as much. Our loved ones want the best for us, but sometimes they don’t realize just how informed we have become.

I was talking with my dentist the other day about various oral pathogens (there are oral spirochetes that are just as harmful as Lyme spirochetes in inflammatory diseases, according to one dental researcher, Dr. Nordquist). As we were talking, I could see he really didn’t have the knowledge base that I had, as just a lay-person, and even he remarked that sometimes patients have more knowledge than the doctors who treat these diseases, as patients who self-advocate tend to become experts in their own disease! He’s a lovely guy, my dentist, but we don’t always agree on various things (e.g. mercury fillings), but he’s open to listening to my diatribes and we spend a lot more time during my appts looking up research on his laptop than we probably should.

Anyway, just sharing this in support of how you’re feeling now and that if our doctors and dentists are admitting they don’t know everything about how pathogens cause inflammation in the body, then how can our families who don’t study this stuff? So, if this helps at all, for me the journey has been about learning about my disease, getting invested in learning about causes, and potential treatments, and making a fully informed decision for myself. It’s amazing how few family members (and even my dentist!) question me when they know how informed I’ve become. Antibiotic therapy isn’t an overnight miracle cure, but it was the only therapy that has made the best sense to me under the circumstances I found myself in. I would never want to coerce anyone to just take my word for it…just encourage others to invest time into doing the research and choosing for themselves. 😉

There are some great lay-friendly resources for learning more about all this and sharing with family members. E.g.:

http://www.envita.com/conditions-we-treat/lymedisease

http://www.hulu.com/watch/268761

http://cureunknown.com/

[cavalier]

Quik note – when one has a positive Lyme test such as Igenex then the CD57 test is not needed – however when this test is negative then it ddoes warrant the CD57 test being done. Later on the CD57 test is also used once Lyme is confirmed to see if the patients levels are going down this is what I have read & also what my Dr who has Lyme patients does – Dr C. in Tunica, Ms.
Basically this echoes what Lynnie is saying. Sometimes the disease is hard to detect in the blood – it goes into dormancy & can suppress the immune system so much it is just not detected. However things like AP & probiotics & Whey specific types can bring
the disease forward enuf due to the immune starting to work better to be detected. Numerous people have had negative lyme tests but still can be affected.
One note though the rash depending on how it looks can also be indicative of Bartonella – almost rod like shaped under the skin- another one very hard to detect in blood work & only 2 labs have a chance at showing it – all others will be negative – Galaxy due to looking at double bands sort of like Igenex employs for their lyme testing – in a sense & Fry labs.
Bartonella is as common as Lyme, maybe even more so carried by not only ticks but skeeters & fleas and maybe other ways as well. Certainly is a buggar too & has it’s way of causing havoc.
Taking pic’s is a good idea.
Persistance is hard especially when we dont feel good – but we have to advocate for ourselves as otherwise most other people have no idea even when you explain it to them how you feel.
The other doc in Asheville does work with lyme – one of his people on his staff came to him as a lyme patient & he got her feeling better he uses AP & other means – so you are fortunate to be in a good location they seem very compassionate.
-if you feel stop gapped.

My family tries but they really dont understand it & the lyme diagnosis just really threw them – and having bartonella. I am glad the doc in Tunica is not shocked that coinfections are often the case – which makes unraveling things a bit tougher & sometimes slower but needed. He appreciates the efforts i have done to become informed as much as anyone can – we still dont have complete answers but we know these diseases do exist.
Jill

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