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Got my Igenex back today. It was negative for both IgM and IgG. My doctor is not an LLMD. She is an integrative medicine MD. She found I have a hormone imbalance and I'll be treated for that. I don't trust her to determine if I have Lyme but she was very willing to do the Igenex testing. They keep kits on hand.

I would like to know what those of you with Lyme knowledge think of my negative results. I think I know the answer to that but I want to read it from a neutral party so I can make a better decision on either to see an LLMD or save my money for my PANS sons treatment.

 

IgM = 18+, 23-25 IND, 39 IND, 41+, 83-93 IND

 

IgG = 18+, 39 IND, 41+++

 

The rest were all -. No coinfections testing.

 

I am symptomatic. I was diagnosed with rheumatoid arthritis in 1997. I have no joint damage just symptoms of joint pain and stiffness, muscle aches, fatigue, word retrieval issues, foggy thinking/memory issues, anxiety, quick to anger and irritate. I took plaquenil for years. Stopped two years ago due to retinal damage from it. Currently on minocycline pulsed dose for the past two years. Helps with joint pain but nothing else. When I was on plaquenil, I was pretty much symptom free.

 

Feel free to tell me I have RA and need to move on. Thank you.

Edited by nicklemama
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my wife had generally similar Igenex results and similar symptoms to yours with some joint pain but no RA. I would say you have autoimmune issues and should focus on those, not necessarily lyme. my wife is on a gluten-, dairy-, corn-, and sugar-free diet and still has the symptoms which are now managable. we started the diet 8 months ago so are relatively new to it.

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I would take these results to a reputable LLMD. You need to keep in mind that Lyme Disease is, above all else, diagnosed clinically and these test results may or may not influence an LLMD's diagnosis when considered with your symptoms.

 

According the CDC guidelines, you are not positive because you need a positive Elisa, plus five IgGs (18,21,28,30,39,31,45,58,66,93) or two IgMs (24,39,41).

 

According to Igenex guidelines, you are not positive because you need two positive IgG or IgM bands (23-25,31,34,39,41,83-93). Igenix's Western Blot is considered by some to be superior due to their technology, and the CDC guidelines were originally developed as a means to identify a population rather than establish diagnosis. More on that here: http://www.ilads.org/lyme_disease/about_lyme.html

 

CDC/Igenex differences aside, both methodologies rely on detection of antibodies to the bacteria, rather than measuring the bacteria itself. Since Borrelia has been shown to create immunosuppression in other mammals, there is good reason to believe that this process might also occur in humans. And if that is true, having RA in 1997 but checking for Borrelia antibodies in 2013 might indeed raise question about immunosuppression and whether or not anyone would expect to see antibodies in your blood tests at this point. More here: http://www.ncbi.nlm.nih.gov/pubmed/12819085

 

I think a good LLMD would not only have a point of view on the value of serological tests and immunosuppression, but could also address the timeline and type of symptoms you experienced, RA or otherwise.

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Forgot to add, my C3a was low and my C4a was high. Some say this is mold,like Willie Shoemaker, some say its Lyme, forgot the name of the researcher who wrote the paper. I had some pretty extensive testing and there are no other mold indicators. The Dr says no mold. I also had a nutra eval test done by Alletess. I am not highly sensitive to any foods. I was a 1 for peaches, peanuts, cauliflower, egg yolk, eggplant, garlic, safflower, pepper, pears, apples.

 

My neurotransmitters are normal. Everything is normal. She told me I'm only her 4th patient she's seen that has all these lab values that are so good. I am not at risk for type 2 diabetes, nor heart disease, nor myocardial stress, etc.... Nothing is out of order except my fibrinogen which indicates inflammation and I have high adiponectin and she said its so high it would be nearly impossible for me to lose weight. Well, you don't say, lol. She told me my insides are at the level of a 20 year old. She said its so rare to see this in 53 yo. Well, if only my outsides looked 20, as well :).

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Don't mean to sound like a copycat but I am very similar. Normal, normal, normal but I know I am not feeling normal. Over many years 2 Igenex tests both negative. Finally after reading so much here and in Lyme books I feel like I was reading my health history. Got the Lyme culture test and was positive. A book I read said mold which we had due to poor window installation will sometimes work synergistically with Lyme to bring symptoms up. That is also when my DS got PANDAS and asthma.

 

I also had huge weight gain even while working with a trainer and nutritionist. Always tested normal on thyroid but my new Dr said I had high anti-TSH which was canceling out my normal numbers. Unfortunately he passed away suddenly and then we moved.

 

Started with acupuncture, trying to avoid antibiotics and I am more clear headed but Neck and shoulders are extremely tender and stiff. She said we probably are clearing the Lyme but it is going into tissues. She has recommended a naturepath to detox out heavy metals. I do non GMO and Paleo diet which has helped.

 

Curious for both you and me

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I agree that you should see a good LLMD (preferably integrative). Your Igenex test is lit up like a Christmas tree compared to the ones I've had over the years. And all the symptoms are highly suspicious. I went for many years not really believing my doctor that I had Lyme, and just limped along basically ignoring my own health issues to focus on getting our ds well. But this past winter, I ended up in so much pain, so fatigued, and with so much brain fog I could barely function. This is the risk of ignoring it. I did turn out to have a mold issue on top of Lyme that was finally verified by the Advanced Labs culture.

 

What is your C4A level? My doctor has said that all his Lyme-only patients are below 10,000 and all his mold patients are over 10,000. My C4A was around 25,000 last winter.

 

Also, wanted to mention that a lot can be done with herbs, supplements and diet. The only prescription med I've taken for all this is Cholestyramine for mold and I'm feeling MUCH better. I've taken all naturals/herbs for the Lyme/Bartonella, etc. I'm not sure a negative on the food allergy test means you wouldn't benefit from cutting out gluten and dairy, but that's always a very personal choice. A good book on diet for Lyme and/or autoimmune issues is The Lyme Diet by Dr. McFadzen - it covers a lot more than just cutting out certain foods and has good tips on what not to eat with certain antibiotics.

 

Best of luck!

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To echo some of the posts above, if you are symptomatic I would recommend seeing an llmd , your results have bands that are Lyme specific, as you probably know due to the changing life cycle of the spirochete the tests are at best directional. Having 3 Lyme specific positive bands (I never understand why the put ind, it's like being a little bit pregnant) plus symptoms would make me consider it highly . "Fortunately" for me my kids tested "CDC positive" so I was saved wasting years trying to figure out what was wrong, but I have read so much research that I only consider the tests directional. I am reading a new book by dr Richard Horowitz why can't I get better which might be of interest. If you can do it I think the sugar free diet has helped a number of ppl

Edited by hopeny
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I would test for coinfections.

 

DD was negative for all strains of babesia tested through Igenex, but improved greatly with malarone which is usually given for protozoan infections. She is seeing further improvement with cryptolepis which is an herb generally used for malaria (protozoa).

 

Some of her herx symptoms with increased dosages of cryptolepis have included coughing and air-hunger - a babesia symptom. So we are now operating on the assumption that she has a protozoan infection as well.

 

LLMDs don't usually assume no infection if symptoms are present. The symptoms are caused by something, you have to figure out what.

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I've been on minocycline for two years. I went off for 30 days and then had blood drawn for Igenex. I'm not sure who to see now. The integrative doc found nothing but hormone imbalance and she was extensive in her testing. I was diagnosed with RA in 1997. I have absolutely no joint damage after all these years. My hands look just like everyone else's. They do not look like the hands of someone with RA. I have a history of tick bites. I'll have to figure this all out after the holidays.

 

I am tested every 3-4 months for mycoplasma and it's always in the raised ranged but not sky high.

Edited by nicklemama
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One simply thing that has helped me personally with detoxing and feeling better is Chia seeds. I know, it sounds hard to believe but it is a great detoxer. All of them, except MILA, are not ground, so had to grind them for my son because the whole ones where not testing well. MILA is $60/pd. whereas, whole Chia seeds are much less. Personally, I feel much less 'old' (even though I am :)) taking chia and it is a great natural detoxer. We do 1 Tablespoon a day in water/juice/smoothie.

 

We are all so toxic from the environment, this will help lighten that load so that the body can focus on healing. It seems every little bit helps when treating a chronic illness.

 

My son's babesia/mico just started showing up again during muscle testing after not showing up for over a year (he was taking cryptolepis like 'rowingmom' because he was 'muscle testing' for them before he actually caught the cough). Coincided with a medium PANS flair after a cough. So supporting the body and immune system as much as possible has been a one of the main focuses (as well as anti-bacterials/anti-virals etc.) of our journey for the past 3 years so we can, hopefully, keep things de-activated so son can be symptom-free and healthy (fingers crossed).

 

Personally, I appear to be the healthy one in the family, and I am also muscle testing for babesia (DH too!). I am asymptomatic but still on herbals to keep it from becoming a problem. Not sure how long it will take? Not sure if son is reacting to us... We are all HIGH in the HHV-7 virus as well. So not sure how much this affects son with PANS? So many questions, but few answers!

 

RA runs in my DH's family as well. :(

 

Seems like a good LLMD is your best bet. One visit could be all you need to get started on being healthier (happened to son). I wonder if the joint pain is from lyme and that you do not have RA?? Lots have been diagnosed with RA only to find out they have activated lyme.

 

So many questions--hope you get some answers soon! Sorry to rattle on so much! :)

Edited by juliafaith
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