Frustrated for sure

Hi there,
I finally got my isotope confirmation test back today and it's positive.
I was thinking that this was good news, because it would confirm Lyme.
Well, I told my husband this and he decided to finally take an interest, by going to the CDC website. He came down stairs, told me I didn't have Lyme and that I'm a nut job! I tried to explain why he needs to look at a lot more than what the CDC says and he refuses, calling everything else junk science.
So.... I'm very frustrated! I do question a lot of the methods I've read for treatment, and I don't consider myself that gullible, but my husband is now under the impression that I'm being taken advantage of...
After 10 minutes of research, he apparently knows more than me, and I've been pretty engrossed in this for about a month or two.

Does anyone know why the CDC thinks it's impossible to have an ongoing infection for years? What makes them think this isn't possible?
The CDC seems to acknowledge post Lyme syndrome, but they seem to have no answers on how it should be treated.
I have been taking doxy for over 2 weeks now, I can't say I feel any different one way or another. I'm just not sure what I want to do after this. I have a follow up to discuss treatment from my positive result next week, but I don't even know if I should push for more antibiotics.
My husband seems to think I should be a lot sicker than I am, to actually still have active Lyme. Some days I would agree with him.
I guess, I'm lucky in respect to what some of you are dealing with...
But still, it's not normal to always feel burning and stabbing pain right?
Not to mention a couple other dozen symptoms I've had or have.
Just questioning everything I guess.
Anyone else ever with a partner that thinks you're crazy?

Sometimes our significant other can't deal with thinking about us other than healthy and well. Plus Lyme is just one of those things that the CDC tries to minimize and sweep under the carpet...

You know how you feel and you have to do what you have to do which is take care of you.

I just want to weigh in on spouses/husbands/partners who don't support our experiences. Oey Vey! The CDC is one perspective, and if I had followed their rationale, I am pretty sure I'd be super sick if not dead. I was down to being able to walk just ten feet, so, so, so sick. My spouse thought I was nuts following a lyme protocol and really pressured me to not go this route. Well, a year later, I'm the one embracing health, and he, who may have given me lyme having had a tick bite with a bulls eye rash - his symptoms haven't abated. My therapist advised each of us staying out of our own health issues. BEST ADVICE for me, personally. Use your common sense, trust your gut, and if you have any doubts I'd suggest this AWESOME screening tool developed by a well regarded practitioner who has treated a kajillion inflicted with this horrific challenge.
www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html
If you score over 46 - don't tarry - start treatment.
Good nutrition
detox routine
support what the lyme attacks
consider herbal remedies to kick start while searching for a doc who gets lyme (an llmd).
Keep us posted!

Lolap said...
Hi there,
I finally got my isotope confirmation test back today and it's positive.
I was thinking that this was good news, because it would confirm Lyme.
Well, I told my husband this and he decided to finally take an interest, by going to the CDC website. He came down stairs, told me I didn't have Lyme and that I'm a nut job! I tried to explain why he needs to look at a lot more than what the CDC says and he refuses, calling everything else junk science.
So.... I'm very frustrated! I do question a lot of the methods I've read for treatment, and I don't consider myself that gullible, but my husband is now under the impression that I'm being taken advantage of...
After 10 minutes of research, he apparently knows more than me, and I've been pretty engrossed in this for about a month or two.

Does anyone know why the CDC thinks it's impossible to have an ongoing infection for years? What makes them think this isn't possible?
The CDC seems to acknowledge post Lyme syndrome, but they seem to have no answers on how it should be treated.
I have been taking doxy for over 2 weeks now, I can't say I feel any different one way or another. I'm just not sure what I want to do after this. I have a follow up to discuss treatment from my positive result next week, but I don't even know if I should push for more antibiotics.
My husband seems to think I should be a lot sicker than I am, to actually still have active Lyme. Some days I would agree with him.
I guess, I'm lucky in respect to what some of you are dealing with...
But still, it's not normal to always feel burning and stabbing pain right?
Not to mention a couple other dozen symptoms I've had or have.
Just questioning everything I guess.
Anyone else ever with a partner that thinks you're crazy?

Just to clarify - you meant the Epitope test,right? The test that retests with a more sensitive test to confirm band 31 is indeed Bb.

I'm sorry your husband isn't a 'believer'. That's tough

Thanks everyone,
Yes, Girlie, I meant the epitope test! It's amazing how many things I mess up!
Hi July Morning, I think my situation is different than a lot of Lyme sufferers. I believe I contracted it when I was about 10. I had a bad case of pitirysis rosea and I now know that Lyme sometimes presents with that. I had dozens of round lesions all over my body. Then developed psoriasis at about 12.
Not treated specifically for it, but as a teenager had many rounds of antibiotics for acne.
My husband and I met in our early 20's and for the most part I was fine. I had what you would call mild fibromyalgia. I always had random pains with head aches and back pain, but nothing that was diabilitating. Fast forward about 7 years, recently married, I just started a business, and all of a sudden I could barely walk or use my hands. My feet were hugely swollen and fingers were like sausages. I got diagnosed with psoriatic arthritis. Throughout my 30's I had 4 kids with few complications. Oddly enough, I always felt my best ( pain free when I was pregnant). Fast forward again to 43 years old and all of a sudden the weight started to pile on for no reason and I stated to feel crappier than ever. 3 years later I was diagnosed with hashimotos. I have been trying to get my thyroid regulated for about a year and half now. Along with the thyroid stuff I found out that my hormone levels were also all messed up, so I'm on progesterone to resolve that. Anyway, about 6 months ago, I found an integrative dr., hoping to have just one dr. that would help me with all my issues. I was telling her about my sharp stabbing electric like pains and the burning skin kind of pains that I have and she asked me if I'd ever been tested for Lyme? This opened a whole new world for me. I declined to test for awhile, hoping that once my thyroid, hormonal and candida issues resolved, I would feel better.
Nothing changed, and the more I read about Lyme, the more I was convinced I had it. Took the test, came back indeterminate, took the epitope test and as of yesterday it's been confirmed that I have Lyme, or do I? Ever since my husband had his little freak out, I've been questioning all of this.
no doubt I've had Lyme, but is it really an active infection that's causing my problems or did the Lyme do its damage at a young age and messed up my immune system setting me up for auto immune disorders that are actually currently causing all my problems. I say this, because I'm not that sick! I feel so sorry for a lot of the people's stories that I have read on here, because most everyone seems worse than me.
I can't say I enjoy things the way I should and I never feel really well, but I've never even been close to being hospitalized, and can mostly function despite fatigue and pain.
Sorry for all my rambling.
I loved that article jrspf. I learned something new, and I sent it to my husband.
Blue Lyme, my husband refuses to believe it's an std how were able to show your partner the spirochetes under a microscope? That's so cool!
Multifacetedme, I think you're right, I'm trying to be super healthy and detoxing. I even sat in a sauna last night, it felt great!
Any thoughts would be appreciated!
You guys are awesome!

I would sit down and watch Under Our Skin parts 1 and 2 with him. Part 2 in particular goes into why the CDC continues to maintain it's stance on Lyme, despite evidence to the contrary. It's all one, big financial conflict of interest.

I forgot the most important link!! The one from the CDC!! That's because the information about how Lyme is a clinical diagnosis is even quoted on their site!!

"If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods"
/www.cdc.gov/lyme/

Unfortunately, that's all they got right.....