Also new here and have test results

Welcome to our community Lori. Have you read the New to Lyme thread at the beginning of the comment page? There is a lot of good info. and symptoms listed for Lyme sufferers. The symptoms vary from person to person which does make it confusing. My husband didn't have a lot of them so I'm glad he got tested through Igenex Lab. I don't think 30 days of the antibiotic will be enough in the healing process. My husband took Doxycycline for a month as a supplement to his treatment. We don't know if it helped at all. People on this forum have different views on the antibiotics, but they may offer invaluable insight on this. You don't have to remember being bitten by a tick because a lot of people, including my husband, do not. Also, a good percentage of people- again,ncluding my husband - do not get the typical "bullseye rash" when infected. I would like to add that Lyme is an epidemic so don't think you can't get it where you live. From everything I have read, it's rare to get the typical medical doctor to agree on Chronic Lyme so you are lucky in that respect. I certainly wouldn't worry about the Lyme diagnosis being correct if your doctor confirms it. Most people see LLMD's...Lyme Literate Medical Doctors. If you do, find one who follows the ILADS protocol. It is the International Lyme Disease Society. They have a listing of LLMD'S in different states. Take care and I hope you find what you need on this site.

Cat53 - Thank you so much for the welcome. I will take a look at the "new to Lyme" thread. From what I've read, I've heard that symptoms vary and that I can get it anywhere. I do live in NJ, which I believe is the state with the highest incidence rate, however being just outside NYC and not being an outdoorsy person, it's just hard to believe! I guess that my biggest question is whether or not the results are a false positive as I've also read that that is no uncommon. In fact, it happened to my aunt.

Razzle - Thanks for reviewing the results. What I was hoping for was to someone knowledgeable here to take a look at them so I appreciate it. When you say "band 23", do you mean "Igm P23 Ab."? It was present in my first test but not in the second - I think. What could that mean? There is a lot of detail in the results for me to make any sense of it.

In terms of finding a LLMD, I did contact one doc that my mom happens to know and he is out of network with my insurance. It's pretty expensive! I did find 3 ILADs certified LLMDs and will call on Monday when I get home from vacation. I hope that they take my insurance or I will be out of luck. Most of the in-demand specialists in or around NYC don't seem to take insurance anymore from what I can tell and the cost of a visit is astounding. I work for a Pharma company and have - or thought that I had - great insurance but I guess that good care comes at a significant cost. Anyway, any suggestions on finding a specialist that can treat me and also takes insurance is greatly appreciated!

Thank you Razzle. I, of course, was hoping that that meant that the first test was a false positive. I appreciate your help and insight. I did read the "new to Lyme" thread and read that there are several different types of tests....any idea from reading these results what type of tests were performed (ELISA, western blot, etc)?

Lori, I am not so knowledgeable like other people on this site, but I know at least one of the bands refers to old Lyme or Lyme that has been in your body for awhile. I forget which one it is. I may have written it on my husband's Igenex report so I will try to remember and check.

Hi Lori,
In your first post you listed these results. I've highlighted what I want you to take a look at:
May 9, 2013

Test Low Normal High Reference Range Units
Lyme Igm Wb Interp. Negative See Comments
Igg P28 Ab. Absent
Lyme Disease Ab, Quant, Igm 1.50 0.00-0.90 index
Lyme Ab Interp.,Eia Positive
Igm P41 Ab. Absent
Igg P30 Ab. Absent
Igg P39 Ab. Absent
Igm P39 Ab. Absent
Igg P41 Ab. Absent
Igg P23 Ab. Absent
Igg P93 Ab. Absent
Igg P66 Ab. Absent
Igg P45 Ab. Absent
Igg P58 Ab. Absent
Lyme Ab Igm Interp., Eia Positive
Igg P18 Ab. Absent
Lyme Igg Wb Interp. Negative See Comments
Lyme Igg/Igm Ab 1.16 0.00-0.90 index
Igm P23 Ab. Present


So in the first part that's in blue, it's telling you that your Lyme test was positive. Do you see that?

In the second one that's in blue, do you see where it says "Igm", then it says that it's positive? That means that you were positive on the IgM portion of the test. These are the very first antibodies that are produced after a person has been exposed to the bacteria. That's your immune system trying, wanting to fight it off. IgG responses are what shows up later on in the infection.

In the third place that I put in blue, do you see where it says "P23 Ab. Present"? That shows that a highly specific band (23) showed up so you have Lyme, there's really no doubt. Any further testing is completely unnecessary.

As we explained earlier, the likelihood of a false positive is very, very low in these tests -despite what the ID docs and the CDC are saying. They have to protect themselves and if they were to admit that Lyme is as prevalent as it really is, then they would have egg on their face because of the stance they have on Lyme being hard to catch, easy to treat and that it's still a rare infection.

You really should be concentrating on finding a good knowledgeable doc (LLMD - NOT an ID doc) and getting started on detoxing and your treatments at this point.

I'm not sure what back problem you are referring to, although that may just be because I'm still bleary eyed this morning!! LOL! I guess I need more coffee!! LOL!

Unless you are talking about the Notalgia Parenthetica. I've dealt with that. I've noticed that when my pain levels get high enough, I start to itch there and the itch can be horrid, one that can't be ignored! I found this:
"Some studies have demonstrated spine disease in the spinal bone (vertebra) at the level of the affected skin. Scientists speculate that spine disease due to age or injury may press on a nerve providing feeling to that area of the skin, which leads to itching."
www.skinsight.com/adult/notalgiaParaesthetica.htm

So that could be caused by most anything. Lyme most certainly can cause neck/back issues, but not all neck/back issues are caused by Lyme. So it's hard to tell if your specific issues are a part of the disease process or if it's due to stress of some sort that your body is reacting to.

As for you wondering how this all happened, ticks can be a small as the period at the end of this sentence. Really. One that size can attach, feed, and drop off and no one would be the wiser if it was in an area that isn't easily seen - like the back or under the hair on the head.

Secondly, these diseases are so wide spread now, that any critter that can bite and survive to bite again can now pass these diseases along - bed bugs, mosquitoes, fleas, all biting flies (Deer flies, Horse flies, etc.), ticks (of course) and more. All it takes is for them to bite a person that has the disease and then bite another person and the disease is transferred.

May I ask what abx and what dose you are taking? You might as well be taking something that will be effective and at a dose that will actually do something for you!

You had both the EIA and the Western Blot tests. The EIA just looks at the total count of all IgM or IgG antibodies for Lyme, thus one number is reported for IgM & one number for IgG with this test. It is essentially the same as ELISA.

The Western Blot breaks out the different antibodies depending on the size (the sizes are the bands), and reports positive/negative on each band.

If I were you, I'd start with the LLMD, and then if you don't feel comfortable with their treatment plan, consult Columbia...

Hi Lori,
The amount of Doxy that you are taking is only bacteriostatic - meaning that it only stops the bacteria from replicating, not enough to actually kill the bacteria. Of course, you will want to try to get your doc to increase your dose to 200 - 300 mgs twice a day for a total of 400 - 600 mgs a day.

Please be sure that you are detoxing well. I've asked a couple of times, so I have to assume that you are detoxing. This will help ease the symptoms that you are experiencing.

As for your back pain, although you are likely doing what you need to be doing, please be sure that your bowels are moving well, but not too good () as that can cause a lot of soreness in that area as well. I know this from wayyyy too much personal experience!

I see the thread about detoxing by taking baths and using epsom salts and a natural fiber brush...is that what you are referring to?

Thank you, I will give it a shot :) I see the LLMD on Monday...hoping to have more info then along with a stronger Rx.

UPDATE!!

Sorry this took me so long. So about 3 weeks ago, I went to see an LLMD. He had a questionnaire...a number of very general "symptoms" (e.g. memory loss, back pain, etc) which I filled out on a scale of 1 to 10. So I put for example a "5" for memory because, well, I have had a bad memory for as long as I can remember. Also, as example, I put a "3" for eye pain because my eye recently started twitching (possibly due to my dry eye and Lasik surgery). I also bought my previous two test results with me.

He didn't ask many specifics about my "symptoms" and went by this scale I filled out. Frankly, most things on there could be explained by other things but he wouldn't know that because again, I didn't have any opportunity to go through specifics. He may be of the camp that people with Lymes tend to explain away their symptoms but I want to try to be realistic and not actually blame Lymes for everything too.

I don't think that he reviewed my test results in much detail. He upped the doxy to 300 mg a day, took some blood (without using gloves which I thought was weird), and basically explained that I'm one of those people that could be "functional" with Lyme disease. An "intelligent woman like me" may live with it and the pain/exhaustion/etc just becomes the new norm for me is how he explained it. I also brought an Igenix kit with me and he said that he could help me send in the kit but doesn't as a general rule have his patients do that. He said that it's an expensive test and isn't worth it because it's not much more accurate than the other tests and he treats based on symptoms.

The test results came back and I only tested positive for one band (I think it was 41 but again, my memory is terrible!) in the western blot test which by CDC standards is not considered positive. So he said that we treat based on symptoms. As far as I know, I have none. At least after 3+ weeks on antibiotics nothing has changed. My shoulder blade still itches, my lower back still hurts (I may have a leg length discrepancy), my extremities get cold (Reynauds), I'm still tired (I have two 3 year olds and get about 5-6 hrs of sleep every night), my neck still is a bundle of nerves, my eye still is dry and now twitches when I squeeze it, I still obviously have a bad memory, and sometimes have trouble focusing (there really is so much going on in my life right now I sometimes don't know what to address first).

One thing that he perked up about when I saw him was the fact that my first week on antibiotics I had headaches every night. He called that "herxing"..my mom was there and agreed. The this past week, my neck was killing me. When I talk to friends and even my husband, I get the "I hate when it happens" reaction. But when I talk to my mom, she gets excited, saying that I am "herxing". Seriously? I mean, I want to believe that that's true in a way. That I have an answer to whether I have Lyme or not. But honestly, I think I had a bad kink in my neck from sleeping the wrong way.

Another thing to note - I went to the orthopedist about my back and he suggesting putting a heel lift in my shoe as my pelvis is higher in one place. I could be a leg length discrepancy. But the reason why I mention this is because he checked my knees and said that they are fine. Apparently the knee joints are the most frequently affected joints by Lyme Disease. Why the LLMD didn't check my knees is a mystery to!

So, the LLMD didn't give me much direction. If I feel like I'm not having symptoms and my gut tells me that I'm okay, then I could stop the antibiotics. I could take a lower dosage of Doxy for a while to see if that does anything or keep the higher dosage for a shorter length of time.

Basically, the LLMD was no help at all and I feel like I'm back where I started! I'm happy that my insurance company is at least paying for the visit but I'm at a loss for what to do next, if anything. I wouldn't mind a second opinion but I'm not sure if my insurance company would approve another out of network doctor and frankly, I can't keep this up..the worrying..the phone calls and appointments...unless I"m sure that I'm having "symptoms". I have to prioritize against other personal and health issues for myself and my family.

Any input? Was my LLMD any less helpful that the ones that you've seen or do I basically finish the antibiotics then go on with my life? Is there something else that I should be doing?

By the way, I asked him about detoxing and he mumbled something about people that are very sick. So I haven't done any of that.