It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lyme Disease Message Board

Lyme Disease Board Index

Hello everyone!

I'm new to the forum. I appreciate the great info on Lymes. Please, pardon me if I ask questions or mention things that have been discussed on another thread. My story seems a bit unique and felt you guys might be better able to help answer questions after hearing it all. My apologies for the length.

I am 43 years old. I live in Houston, TX. Not exactly a hotbed of Lymes activity. In June of 2008 I was diagnosed with Lymes. This took quite awhile to diagnose. I started feeling bad in late March of 08. My first two symptoms were swelling around the eyelids with red discoloration. I had extreme pain on the pads of my feet when getting out of bed, that I could work out by walking around. Initially, I ignored the symptoms thinking whatever it was would work itself out. Within about a week I started deleloping severe pain in the joints of my toes and hands as well as pain in my left side. At the time, I did not have insurance and the pain had gotten so bad I went to the E.R. I was given pain medication and was sent home with scheduled appointment with GP in the Harris County system. Of course the hydrocodone didn't touch it. Due to the fact that I didn't have insurance it took awhile to get in to see the doc. Can't really remember how long. Once there, the doctor took several labs. The results are listed below. The doctor asked if I had been anywhere out of state. I told him that I had been to New Mexico up in the mountains for a week in February to help a friend build cabinets in their cabin. He mentioned that I could have Lymes but was skeptical because I hadn't been to any states normally associated with Lymes and on top of that I never noticed a bite or rash.

AST - 45(H)
ALT - 83 (H)
ANA Screen - Positive (A)
Lyme IgG/IgM Ab - 2.32(H)
Lyme Dis Ab IgM Qt - 0.91(H)
Sed Rate - 81(H)
CRP, high sens - 2.050(H)
RA Factor <16(H)

Labs for hepatitis,etc. were negative. I was given Prednisone and was scheduled for more tests. The predisone didn't help at all. Due to the county overload, it was going to be some time before they could get me back in. Meanwhile, the symptoms continued to get worse. It seemed like every other day a new joint was affected. Joints I didn't even know I had. It would always get worse when I was in bed at night, making it difficult to sleep. My hands were the worst. I would lay frozen bags of peas on them to get a little relief. For the most part there wasn't much swelling or redness to affected joints. I suffered some fatigue, but never any fever or other obvious symptoms. I couldn't take the wait to see the doctor again any longer and was referred to a doctor about an hour away that could see me. He ran a series of tests. The tests for RA, Lupus, Sjogrens and Scleraderma were all negative. However the Lymes IgM was Positive. Bands 39 and 41 were reactive. He suggested I be treated for Lymes.

So, first question(s) for you guys....How confirmatory is this test? Can this result be something besides Lymes? If so, what?

He prescribed Doxycycline. After about 2 to 3 weeks the symptoms went away (for the most part) and I started to put the whole ordeal behind me.

Fast forward to about 5 weeks ago....I woke up one morning with the same beginning symptoms as before. Eyes and feet. I will say that I had been having a minor version of the foot issue for some time but chalked it up to plantar fasciitis and or an achilles issue. I knew instantly what I had in store for me. Now, having insurance, I found a pcp that could see me quickly. In my mind, I would get more Doxy and would get better. Of course thats not how it works, but relief was all I could think of. The doctor ran a series of tests and set up an appointment with a rheumatologist. Once again all of the usual suspects were eliminated. The ANA was positive. RA factor was within normal range. He did not order an IgM. He gave me presription for Naproxen. The Rheum appointment was for mid-week the following week. In the mean time, the symptoms got worse just like before, but with the joint pain setting up shop in my shoulders and neck and back of head. It eventually spread everywhere. Excruciating to try to sleep. Eases up during the day. I got in to see Rheum and they drew alot of blood. 18 viles the first time as well as xrays and ultrasound on my organs. I went in for a follow up about a week and a half later to hear the results of the tests. Essentially he said there were some inflammatory issues but that the IgM test was negative and he felt that I have reactive arthritis. I had a high blood count and a bit of a fatty liver. He was very skeptical of the orginal Lymes diagnosis from 6+ years earlier and was against putting me on Doxycycline. He put me on Prednisone, Tapering from 20mg to 5mg over the course of 12 days. Needless to say I was pretty disappointed. I had tried the Prednisone last time without any relief. The difference this time being a higher dose to start. Unfortunately I did not request a copy of the test results. They are supposed to mail them to me. I was surprised to feel almost immediate relief from the Prednisone. I had 2 days almost completely pain free and could sleep. However, as soon as I started to taper down, everything started to come to the surface. At this point I'm in big dispair so I called the doctor to ask if I could stay on the higher dose. I had to speak with the nurse and she relayed the message. I was told to stay on the tapered dosage. I guess in an act of severe pain and a bit of roid rage, I called beck and left a voicemail saying that I wanted my test results mailed and if I wasn't prescribed the Doxy I was going to get a second opinion. Needless to say the doc phoned in the Doxy. I took my first dose tonight.

Now for a few more questions....

1. Was I wrong to push for the Doxy?
2. Any opinions on if this is Lymes?
3. Is the IgM test the same as the Western Blot test?
4. Should I recommend any specific new testing?
5. It seems like, of course it's reactive arthritis, you get that with Lymes. Why is doc resistant to treating with antibiotic.
6. Are there other bacteria that mimic the western blot results?
7. Should I be concerned that the Rheum may not be reading the Lymes related tests correctly since we are here in Houston and Lymes is rare here?

Thanks so much for any feedback! Feeling pretty overwhelmed and in need of answers from people that have been here.
Yikes, how confusing for you. Lyme Disease has a lot of symptomatic overlap with autoimmune disease, so I can see why this is quandary for you.

High inflammation markers (CRP and sed rate) are consistent with both pathologies. However, you have a positive ANA and elevated liver enzymes, which you don't usually see in Lyme Disease. but you also have positive Lyme antibodies - these can be false positives though. Whether you were given the ELISA or the IFA test for antibodies, they are both pretty rubbish and only useful as general screens. They often come back with false negatives, and cross reactions with other pathogens can cause false positives too.

For Lyme testing, the way to go is with IgG and IgM western blot. The bands you have, 39 and 41, don't really clinch the diagnosis as they are pretty non-specific bands. It doesn't mean that you don't have Lyme, but it's a point against it.

Sometimes you just need to go on your response to medication. You mention that you felt better on both doxycycline and prednisone (briefly), so you can't draw many conclusions from that either. In my opinion, you should try out prednisone for a more extended period to see if it brings you relief. In the meantime, more specific tests for AA diseases might be in order (Schrimer's test/salivary gland biopsy to test for Sjogren's, for example. They can be tricky to catch too). If nothing pans out and you don't feel better after a while, it might be time to go see an LLMD.

1. Was I wrong to push for the Doxy?
-no, understandable to be confused.

2. Any opinions on if this is Lymes?
-like 50/50 at this point. the symptoms you described could be due to either Lyme or an autoimmune disease. or both!

3. Is the IgM test the same as the Western Blot test?
-there are two tests: IFA/ELISA which look for Lyme antibodies, and are notoriously unreliable. The better test is called Western Blot and looks for disease reaction on specific 'bands'...39 and 41 aren't considered specific for Lyme.

4. Should I recommend any specific new testing?
-The tests I mentioned above to definitively rule out Sjogren's may be a good idea. Also, Rheumatoid factor, and Sjogren's SS-A Ro and anti-SS-B La if you don't want to go through with a salivary gland biopsy.

Definitely get another western blot taken and sent it to Igenex Labs for a proper look.

5. It seems like, of course it's reactive arthritis, you get that with Lymes. Why is doc resistant to treating with antibiotic.
-Lyme awareness among most physicians outside of New England is pretty low. Many doctors just aren't aware of its incidence, or the litany of symptoms it can cause. Because you live in TX, an area not traditionally associated with Lyme, your doctor may be skeptical. Also, the only reactive bands you had on Western Blot were two rather insignificant ones.

6. Are there other bacteria that mimic the western blot results?
-It depends on the band - some are more specific than others. In your case, definitely other pathogens could have caused those positive reactions.

7. Should I be concerned that the Rheum may not be reading the Lymes related tests correctly since we are here in Houston and Lymes is rare here?
-I don't think he is reading them incorrectly. Reading a lab test is simple business for any doctor. The problem may be with the lab itself - labs that aren't familiar with the disease may mess up the results. It's best to go to a specialist lab, and the best one I know of is Igenex in CA.

All times are GMT -7. The time now is 03:17 AM.

© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!