Lyme question

[Janie Grace]

I had Lyme last two summers ago (2011) -- at least, I believe I did. I thought I had a suspicious bite but my PCP blew it off and would not test me. Then a few months went by and I was experiencing strange symptoms... pain throughout my body, achy joints, fatigue, brain fog. I mentioned it to my gyn at my annual check-up (it was August, maybe 3-4 months after the suspicious bite). She prescribed an antibiotic before the test even came back. I had a typical (and severe) Herz reaction and then felt completely better. The test came back neg but I am pretty sure it was Lyme based on the way my body responded to the abx.

 

I have noticed since then that I will often hurt before a storm/rain. I have also noticed that my joints in my hands hurt sometimes, and sometimes it's severe. In the past few months, I have developed some patches of eczema on my face.

 

Today, I am experiencing all of that, and it just dawned on me that this could be a flare-up or a recapitulation or something. That happens with Lyme, right? I think I've been in denial, hoping that the abx took care of it. But I am SO sore right now, I can barely type. I got nothing done today because of the severe pain throughout my body. What should I do? Are there dietary things to try before just going back on abx? Feeling desperate and sad.

[Corraleno]

How long did you take the antibiotics for? A short course will generally not eradicate Lyme if you've already had it for several months.

 

Also, do you know which test she ran that came back negative? Usually the first test is an EIA, then if that is positive, they do a Western Blot, either IgG or IgM. It's critical that you get the IgG if you think it's been more than 30 days since you were exposed. The IgM is only accurate in the first 30 days or so after exposure; beyond that you need the IgG. My DS's doctor ordered the IgM, despite knowing that if DS had been exposed it would likely have been 2 years earlier. When they IgM came back negative, he "guaranteed" me that DS absolutely, positively did not have Lyme. :glare:

 

Luckily I listened to my gut, and took him to another dr, who ordered the IgG — which came back overwhelmingly positive for 9 different factors. He's been on doxycycline for 6 months now, and will continue to take it for quite a while. He is very slowly getting better.

 

Good luck — getting a proper diagnosis is much harder than it should be, and treatment is no fun either. :(

 

Jackie

[Janie Grace]

How long did you take the antibiotics for? A short course will generally not eradicate Lyme if you've already had it for several months.

 

Also, do you know which test she ran that came back negative? Usually the first test is an EIA, then if that is positive, they do a Western Blot, either IgG or IgM. It's critical that you get the IgG if you think it's been more than 30 days since you were exposed. The IgM is only accurate in the first 30 days or so after exposure; beyond that you need the IgG. My DS's doctor ordered the IgM, despite knowing that if DS had been exposed it would likely have been 2 years earlier. When they IgM came back negative, he "guaranteed" me that DS absolutely, positively did not have Lyme. :glare:

 

Luckily I listened to my gut, and took him to another dr, who ordered the IgG — which came back overwhelmingly positive for 9 different factors. He's been on doxycycline for 6 months now, and will continue to take it for quite a while. He is very slowly getting better.

 

Good luck — getting a proper diagnosis is much harder than it should be, and treatment is no fun either. :(

 

Jackie

 

I don't remember -- I will ask about that (duration of the abx), and also what test it was. It was probably the EIA, and since it was negative and my symptoms were improving on the abx, we just called it good. Not looking forward to going back to the PCP who wouldn't even test me. My gyn is somewhat Lyme literate but my insurance won't let me go to her for this.

[Denisemomof4]

I don't remember -- I will ask about that (duration of the abx), and also what test it was. It was probably the EIA, and since it was negative and my symptoms were improving on the abx, we just called it good. Not looking forward to going back to the PCP who wouldn't even test me. My gyn is somewhat Lyme literate but my insurance won't let me go to her for this.

 

Your PCP won't help you. Boston Childrens, Dartmouth Hitchcock, and two local hospitals and specialists couldn't help us. In fact, dd had seen 26 doctors before she saw a Lymes literate md. THIS is the only doctor you can see if you really want the proper help. They may or may not be covered by your insurance. We lucked out, ours is. Many have to pay for Lymes treatment out of pocket, and we had to pay for very expensive testing out of pocket.

 

Dh was turned away from his PCP with a VERY visible bullseye rash. One of my sons had a very visible bullseye rash. Dd12 had noo rash but has had health issues for 8 years. She does have Lymes and is currently very sick from the meds she started three weeks ago. :crying:

[Home_s_Cool]

I am so sorry you are experiencing this and the frustration that comes from not getting treatment while feeling terrible. I can relate so much to this as I also struggled with getting a Lyme disease diagnosis and treatment while not being able to perform simple tasks and taking care of 4 small children at the time.

 

Unfortunately, many doctors seem "Lyme illiterate". This has been my experience and I live near Lyme, CT where it was originally identified back in the 70s. There are numerous "experts" in the my area.

 

I'm acutely aware that the energy to do day-to-day things for you is probably overwhelming at times. But please push to get this attended to. I now regret not being more of an advocate for my health.

 

If you go back on antibiotics keep your gut healthy with probiotics, prebiotics, etc. I wish I had done more of this at the time.

 

I was also tested for Lupus since I had the butterfly-rash across my checks - but that was negative.

 

 

Here's what happened to me:

I was bit in Sept 2001 - but not diagnosed till May 2002.

 

I did three 10 day - cycles of doxycycline, then tested negative for Lyme. Doctors thought I was cured.

 

The Lyme caused damage to my knee, so I needed surgery (a synovectomy) in 2003. My rheumotologist (who is a Lyme expert in my area) cleared me for the surgery based on the Lyme test being negative.

 

Well - it wasn't - Lyme hybernates. That's the explanation I was given. After surgery the symptoms returned and the tests came back positive. The doctors got serious and I was put on a 28-day cycle of Rocephin. A PIC line was insert in my arm and I self-administerd the drug at home.

 

This took care of the Lyme, but my immune system was shot. A year later symptons returned - Lyme tests were still negative, but I tested positive for Sjogren's Syndrome. It was imitating the Lyme symptoms. I now have to take 400mg of Plaquenil for the Sjogren's.

[Lizzie in Ma]

How long did you take the antibiotics for? A short course will generally not eradicate Lyme if you've already had it for several months.

 

Also, do you know which test she ran that came back negative? Usually the first test is an EIA, then if that is positive, they do a Western Blot, either IgG or IgM. It's critical that you get the IgG if you think it's been more than 30 days since you were exposed. The IgM is only accurate in the first 30 days or so after exposure; beyond that you need the IgG. My DS's doctor ordered the IgM, despite knowing that if DS had been exposed it would likely have been 2 years earlier. When they IgM came back negative, he "guaranteed" me that DS absolutely, positively did not have Lyme. :glare:

 

Luckily I listened to my gut, and took him to another dr, who ordered the IgG — which came back overwhelmingly positive for 9 different factors. He's been on doxycycline for 6 months now, and will continue to take it for quite a while. He is very slowly getting better.

 

Good luck — getting a proper diagnosis is much harder than it should be, and treatment is no fun either. :(

 

Jackie

 

Praying for your son, so hard. Good for you fighting for him!

Love, another Lyme mom

[Lizzie in Ma]

Your PCP won't help you. Boston Childrens, Dartmouth Hitchcock, and two local hospitals and specialists couldn't help us. In fact, dd had seen 26 doctors before she saw a Lymes literate md. THIS is the only doctor you can see if you really want the proper help. They may or may not be covered by your insurance. We lucked out, ours is. Many have to pay for Lymes treatment out of pocket, and we had to pay for very expensive testing out of pocket.

 

Dh was turned away from his PCP with a VERY visible bullseye rash. One of my sons had a very visible bullseye rash. Dd12 had noo rash but has had health issues for 8 years. She does have Lymes and is currently very sick from the meds she started three weeks ago. :crying:

 

Still praying for all of your dc too, Lyme club sucks. :grouphug:

[Lizzie in Ma]

It can absolutely flare up, if you are able, find an LLMD, if you are not, like us, fight for yourself. :grouphug::grouphug:

[Janie Grace]

How long did you take the antibiotics for? A short course will generally not eradicate Lyme if you've already had it for several months.

 

Also, do you know which test she ran that came back negative? Usually the first test is an EIA, then if that is positive, they do a Western Blot, either IgG or IgM. It's critical that you get the IgG if you think it's been more than 30 days since you were exposed. The IgM is only accurate in the first 30 days or so after exposure; beyond that you need the IgG. My DS's doctor ordered the IgM, despite knowing that if DS had been exposed it would likely have been 2 years earlier. When they IgM came back negative, he "guaranteed" me that DS absolutely, positively did not have Lyme. :glare:

 

Luckily I listened to my gut, and took him to another dr, who ordered the IgG — which came back overwhelmingly positive for 9 different factors. He's been on doxycycline for 6 months now, and will continue to take it for quite a while. He is very slowly getting better.

 

Good luck — getting a proper diagnosis is much harder than it should be, and treatment is no fun either. :(

 

Jackie

 

So I found out, I was on doxycycline, 100 mg 2X day, for 6 weeks. The test was the ELISA. Is that the same as the EIA?