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Should I just abandon the suspicion of Lyme?

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Posted 11/26/2019 2:49 AM (GMT 0)
Advice/insight appreciated:
After recently leaving my PCP of 20 years for a new GP/fresh set of eyes, I'm feeling like it might already be at a standstill. The new practitioner seemed very proactive wanting to get to the bottom of root cause of my strange health symptoms over past year which increased significantly this past spring. So she issued a Quest Western blot because she said the first one I had wasn't a true western blot (didn't list out bands just said negative). Anyhow this test revealed IgG band 18 reactive, band 39 IgM reactive, the rest said negative. She said she needs more ammunition and recommended IGenex but due to spending so much on tests already I went with Stonybrook (covered by insurance) & that test revealed: 41 Indeterminate, positive IgM 58,60,64,66,72,93 & a side test MDL showed Mycoplasma Pneumoniae IgM positive. When I asked her to interpret results she said: 1. Your lyme testing was indeterminate but C6 is normal, you would expect this to be abnormal with lyme.
2. Mycoplasma- PCR is negative but IgM is positive; PCR is a better test for this. Okay to finish up course of Doxycycline.
3. Babesia is negative.
When I asked her why at this point I'm not considered Lyme positive between the two very recent West Blot tests this was her reply: YOu are citing IGENEX criteria - but you had StoneyBrook - what am I missing
They are two different tests with different criteria.
Band 41 is VERY NON=specific; everyone and their brother is band 41 positive
Last, most individuals are positive for mycoplasma because we have had this infection previously.
We don't treat positive blood test for mycoplasma because I really do not believe that it is a lyme related infection; it is a respiratory infection.
I'm totally confused. I guess she is saying she will not commit to a Lyme positive w/out Igenex and that Mycoplasma is no big deal and that band 41 is not really Lyme specific? I clearly feel like I'm at a loss. I know the answer is go to LLMD or LLND but I'm far out on a wait list. I'm already taking Doxy, supplements and tinctures. I'm willing to accept another diagnosis but I've yet to be given one. I don't test positive for ANA, CRP or sed rate. I'd love it if someone that has seen me could give me a reason, just any logical reason for all of my strange health issues this past year. I just feel like screaming at top of my lungs out of frustration. Sorry and thank you for letting me vent.
Posted 11/26/2019 3:08 AM (GMT 0)
“Anyhow this test revealed IgG band 18 reactive, band 39 IgM reactive, the rest said negative. She said she needs more ammunition and recommended IGenex but due to spending so much on tests already I went with Stonybrook (covered by insurance) & that test revealed: 41 Indeterminate, positive IgM 58,60,64,66,72,93 & a side test MDL showed Mycoplasma Pneumoniae IgM positive. When I asked her to interpret results she said: 1. Your lyme testing was indeterminate but C6 is normal, you would expect this to be abnormal with lyme.
2. Mycoplasma- PCR is negative but IgM is positive; PCR is a better test for this. Okay to finish up course of Doxycycline.
3. Babesia is negative.
When I asked her why at this point I'm not considered Lyme positive between the two very recent West Blot tests this was her reply: YOu are citing IGENEX criteria - but you had StoneyBrook - what am I missing
They are two different tests with different criteria.
Band 41 is VERY NON=specific; everyone and their brother is band 41 positive”

Your first test band 39 is lyme specific - a LLMD would consider this enough to back up a clinical diagnosis of lyme.

Your Stonybrook test showed 93 which is le specific.

I don’t think everyone with lyme has low c6
Hopefully others willl confirm that.

Looks like you have Mycoplasma

You should find a Lyme Literate dr
Posted 11/26/2019 1:56 PM (GMT 0)
I do agree with her regarding the mycoplasma. I think it's a little foo foo like the whole candida, heavy metal, parasite, gluten stuff. Not saying these things aren't an issue, but still. She doesn't sounds all that bad, actually. I think getting tested through IGeneX would be smart, but do make sure you're also tested for Babesia duncani. I'm guessing she only tested you for microti.
Posted 11/26/2019 4:02 PM (GMT 0)
Sounds to me like Lyme is definitely worth pursuing, based on what you have described here and in past posts. Even if it takes a while to see an LLMD, there are things you can work on in advance of a diagnosis. Some LLMDs even insist on a period of fortifying the gut, immune system, and other issues (allergies, diet, autoimmune illnesses, etc.) before starting on antimicrobial treatment. You can work on getting your body in the best possible shape for now. But keep your appointment with the LLMD. Even if you end up not having Lyme, most LLMDs are well-trained for managing other complex chronic illnesses that can fit your symptom profile, like CFS/ME and fibromyalgia.
Posted 11/26/2019 4:22 PM (GMT 0)
No such thing as autoimmune illness without going into the science which most people on here wouldn't be able to grasp. Also, fibro is caused by Lyme. Plenty of research on this and my very severe fibro was cured with Lyme treatment.
Posted 11/27/2019 2:27 AM (GMT 0)
@Natasha
Agree, don't think? it's Fibromyalgia. Neurologist and Rheumatologist did not give any diagnosis other than in time they thought symptoms would miraculously just go away I guess. I think because I'm small/good shape people think I'm younger and don't see me as ill, which can further complicate getting to a root cause. When I was at my worst, it felt like a whistle was in my chest while breathing lying down so I wouldn't be surprised if I had or have something going on IgM active? I just think overall they are easy to dismiss if not meeting cdc criteria so I'm fed up, burnt mentally drained on seeking help. In meantime I continue to work on gut health, exercise and improved rest/better sleep. I may self treat with Ivermectin and see how it goes.
Posted 11/27/2019 7:15 AM (GMT 0)
Hi Amy,

Try disulfiram. Antibiotics don't cure chronic Lyme and can be brutal in the doses you would need to take. I recommend the Facebook groups if you're going to try disulfiram. Tons of people and up to date info on there. You can also order it online (from India) if your doctor won't, and you can order your own blood work (liver function needs to be tested) as well though I'm sure your doctor would do this part for you.
Posted 11/27/2019 7:17 AM (GMT 0)
AmyG1973 I think it's a good idea to explore Lyme with what you have shared. I tested pos IGM WB for bands 41 & 23 in 2014 but neg IgG. Then only IgG 18 this past July and have been treating. Better than suffering.
Posted 11/27/2019 7:55 AM (GMT 0)
Re: antibiotics for treatment.
Many people have used antibiotics to get into remission .
Posted 11/27/2019 9:46 AM (GMT 0)
What your physician said is correct. At this point without a firm diagnosis, you need a physician who can clinically diagnose you with whatever it is you have. I would suspect dysbiosis but what kind I can not say.
Posted 11/27/2019 10:50 AM (GMT 0)

Girlie said...
Re: antibiotics for treatment.
Many people have used antibiotics to get into remission .

Yes, including me only to relapse years later. Anyway, Amy, please check out the Disulfiram Facebook groups.
Posted 11/27/2019 10:53 AM (GMT 0)

ElizKA26 said...
AmyG1973 I think it's a good idea to explore Lyme with what you have shared. I tested pos IGM WB for bands 41 & 23 in 2014 but neg IgG. Then only IgG 18 this past July and have been treating. Better than suffering.

I agree and I feel sure she'd test positive through IGeneX, however it's expensive and with a diagnosis of fibro she might as well treat.
Posted 11/27/2019 1:01 PM (GMT 0)

Natasha said...
Hi Amy,

Try disulfiram. Antibiotics don't cure chronic Lyme and can be brutal in the doses you would need to take. I recommend the Facebook groups if you're going to try disulfiram. Tons of people and up to date info on there. You can also order it online (from India) if your doctor won't, and you can order your own blood work (liver function needs to be tested) as well though I'm sure your doctor would do this part for you.

Amy,
Disulfiram, from what I have read from people who are using it, can be really brutal. Please do your own research and make informed decisions. There’s no one way or magic pill for any of this.
Posted 11/27/2019 1:09 PM (GMT 0)
Amy,

To answer your question, should you abandon suspicion of Lyme? In my opinion, no you should not. As Girlie pointed out, there were Lyme specific bands that were positive in the tests you have already had. Doctors do not all agree on how to use or interpret test results, which makes all this difficult for patients.

You have positive Lyme bands combined with symptoms, which makes for a very strong suspicion that Lyme or other related infections are causing you to be unwell.

I would echo saraeli’s advice to keep your appointment with the LLMD and work in improving what you can about your overall health now. A good LLMD should be able to give you better insight, as well as treatment options.
Posted 11/27/2019 2:41 PM (GMT 0)
I dont think anyone hear can answer your question. Your on a lyme forum though so expect a little bias smile
Posted 11/27/2019 6:48 PM (GMT 0)

WalkingbyFaith said...

Natasha said...
Hi Amy,

Try disulfiram. Antibiotics don't cure chronic Lyme and can be brutal in the doses you would need to take. I recommend the Facebook groups if you're going to try disulfiram. Tons of people and up to date info on there. You can also order it online (from India) if your doctor won't, and you can order your own blood work (liver function needs to be tested) as well though I'm sure your doctor would do this part for you.

Amy,
Disulfiram, from what I have read from people who are using it, can be really brutal. Please do your own research and make informed decisions. There’s no one way or magic pill for any of this.


*************************************************************************************************
Yes, please do your own research and please join one of those Facebook groups. Disulfiram is a walk in the park compared to the antibiotics. Absolutely no comparison. Most of the over 12,000 people in these Disulfiram groups can vouch for this as opposed to a handful of yackers on here. Good luck Amy. You'll figure it out.
Posted Yesterday 8:24 AM (GMT 0)
Hello, AmyG. Many people, myself included, are told they don't have Lyme because a test came back negative. I was told this even though the doctor *knew* I had it. She wanted to protect herself from potential legal problems from treating Lyme that didn't show up on a test. Might try DNA Connexions, but it's pricey. There might be other LLMDs around your area; try contacting ILADS for names if you like. From what I have seen, a negative result doesn't mean you don't have it--most tests look for an immune reaction to Lyme, which you can't get if you have Lyme and it's shut down your immune system.
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