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My IgeneX results came back. I am 41+ on both the IgG WB and the IgM WB.
All the rest are negative. Does this mean anything?
Lori
Lori,
I read this Lyme doctor's comments when I did my research because my 41 band showed as IND. This blog talked specifically about 41 band.
http://lymemd.blogspot.com/2008/09/all-i-got-was-41band.html
The link I started (now I am so embarrased to look at it) has a good discussion.
http://www.rbfbb.org/view_topic.php?id=3451&forum_id=1&highlight=I+got+my+lyme+test+back
Take your time and do more research.
JB
Lori,
You may need a 31 epitope to confirm if you are positive. That's what I did. It's going to be another $100. However, you don't need any blood work. The Igenex still stores your blood work for 30 days (?). You will give your credit card information to the secretary and you will need to let your doctor's office to call Igenex to order that test.
If I were you, I'd call Dr. H of Igenex. He normal works on Tuesdays. You could call on Monday to find out.
I am as anxious as you are, Lori. Don't know what to think to tell you. I was so excited when I learned I had Lyme. Because it's treatable and also I have not been doing well with minocyclin. I felt like hitting a dead end. Now I am looking forward to this new treatment. I am ready to shake these lymies off my bones and muscles with FULL STEAM!!!
Hugs,
JB
Hello – I'm sorry for not replying sooner. I have been out of town. Thank you for the information JB. I've read it and I'm still not sure if that means I am positive for lymes as different Drs. have different views. Ugh I am so confused!! I was really hoping, as you, that I would also test positive for Lymes. That would have explained so many of my symptoms. I'm not sure what to do now or how I should proceed.
Kim and Maria – There were no Ind. All others were just strictly negatives.
Any input would be very much appreciated.
JB – Good luck on getting rid of those lymies. I love your positive attitude!
Lori
[user=212]Time_of_my_Life[/user] wrote:
Ugh I am so confused!! I was really hoping, as you, that I would also test positive for Lymes. That would have explained so many of my symptoms. I'm not sure what to do now or how I should proceed.
Any input would be very much appreciated.
Lori,
If you read that blog carefully, the doctor said this: “The clinical assessment is what matters, not lab results.”
The lady who also had 41+ positive. She had low positive on 31 (IND).
I am not a doctor, it's hard to tell you what to do. If I were in your shoes, I'd definitely test it again. I would have a washout period for abx for three weeks and get myself tested again. I would seek other lab (not Igenex) to get second opinion.
I would also visit a good Lyme doctor. Some doctors go by lab results, some go by patients' symptoms. If I have all the symptoms, it is an evident in some doctors opinions that I got Lyme.
You could go back to the link I started. There was one suggested treatment link. It listed all kind of Lyme symptoms. Perhaps you could take a look at it???
I was very confused like you. It's very hard to sort all these out. I am still learning.
JB
Lori,
I can appreciate your frustration in not knowing which way to go. Lyme is mostly a clinical diagnosis and if you've stalled with AP for your RA, Lyme is definitely a possibility. Maybe you could call a LLMD's office and speak with the nurse and see what they say.
Good luck…..kim
Here is a list of the symptoms I have had and am still experiencing:
Extreme Fatigue but not able to sleep
Stiff Neck… lots of cracking and hard to turn from side to side
Muscle soreness.. especially between my shoulder blades but also in other areas
muscle spasms and cramps… especially in legs and lower stomach area… also muscle twitches
excessing sweating when exercising followed by some dizziness and a fluttery irregular feeling in my heart beat that lasts for remainder of the day..almost feels like my heart has a fever.
Difficulty getting enough air when exercising.
Feeling lots of anxiety and at times panicky… the panic attacks are new. My throat feels like its closing up on me and my heart flutters and feels very tight.
Depression
Memory loss… forgetting names and knowing what I want to say but not able to verbalize it at times.
soles on my feet very tender
fussy vision
tingling in fingers at times
very cold fingers and toes .. sometimes even turning blue
occasional night sweats
Dry eyes
Losing lots of hair
I had one swollen knee which was drained a couple times. lots of synovial fluid.Those are all the symptoms I am feeling right now. My biggest complaint is being tired… It's so bad…and having a stiff neck.
So basically positive bands on 41 mean nothing or is there some kind of infection in me? Where would I go to get tested for co-infections?
The only tick I can remember having is one about 5 years ago that my husband pulled from the back of my neck. Thats not saying I haven't had more.. thats Just the most recent one I can remember.
What would you do if you were in my position with the 41 bands? I just don't even know what my next step should be. I almost feel like giving up… but I want to feel better… thats what keeps me going. I'm not sure where the closest LLMD would be to me. There are none in South Dakota and it looks to me that Minnesota is just Infectious Disease Drs? Not sure if that is the right fit for me either. I would go further if I could find one over a state or two or three. Its all so confusing to me right now. I really don't want to give up.
Lori
Lori,
How frustrating for you!
There is no doubt that your Igenex lyme test is negative. Band 41 indicates you have something present with a flagella, or whip-like tail, which can be many different bacteria or viruses including lyme. If you had no symptoms, you would definitely not have lyme.
That being said, then why so many unrelated symptoms? All of your symptoms fit the lyme and co-infection clinical diagnosis. One of the co-infections of lyme is bartonella, which match some of your symptoms, specifically; fatigue, lower abdominal pain and sore feet soles. Babesia, another co-infection is known by sweats, muscle aches, air hunger and eye issues. You mention having a stiff neck that cracks; that is often referred to as lyme neck. :headbang:
The fact that you have a known tick bite, along with your symptoms would definitely incompass a lyme diagnosis. I would recommend you find an LLMD and evaluate based on a clinical diagnosis.
nancy
[user=212]Time_of_my_Life[/user] wrote:
What would you do if you were in my position with the 41 bands? I just don't even know what my next step should be. I almost feel like giving up… but I want to feel better… thats what keeps me going.
Lori–
Your symptoms sure sound like Lyme to me. My doctor says that “41 kDA is the flagella or tail of the Borrelia burgdorferi and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E coli, etc.) may have a flagella and possibly cause a false positive test result, there is a 90-97% correlation with a 41 and antibiotics helping.”
When you're not feeling good it is so hard to find help–but that is what I would do–look for a LLMD. Don't give up!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Lori,
I definitely wouldn't waste time with an infectious disease doctor, they are part of the problem and it would likely be a waste of time and money.
Does a LLMD have to be within driving distance or are you willing to fly? My LLMD is in Missouri and is excellent, there are excellent docs in California and several people on the board are happy with their doc in southern Wisconsin.
I'm guessing with a known tick bite and those symptoms a LLMD would treat you.
Take care…..kim
Thank you all for your kind replies. It's the support I get from all of you on this site that keeps me going when I feel like giving up. I believe I have two options right now. Either I have another series of Clindy IV's done and hope that they give me a boost and help me feel better or I make an appointment with a LLMD.
Kim – I am willing to travel to Missouri for a good LLMD. It may be the closest one to me. How often do you need to go back to see him? Does your insurance company cover your visits and medications?
I'm starting to feel that since I'm already on an antibiotic with AP that maybe mixing it up with a combination of antibiotics couldn't hurt.
Lori
Lori,
First thing I would advise you is do not try to be your own LLMD, it is way too complicated and the large doses required could get you in big trouble without a pro on your side.
Dr. C. does not take insurance so you pay at time of visit. I file for reimbursement and my insurance has paid everything at the out-of-network rate. You'd have to check with your insurance, of course. He's good about writing scripts and having labs done at your local places within your network to cut expenses.
At the beginning I went to him every four months, now it's six, eventually it will be annually.
Did I send you his contact info? If not, let me know and I'll get it to you.
Take care…..kim
Hi Lori,
I would definitely go for another round of IV Clindamycin. There are a few of us that are on lyme treatment, and continue with monthly Clindamycin IV's, because it is a lyme abx.
Just my opinion, but I would set up the LLMD appointment now, because it will take months to get in. Even if you don't technically have lyme, you may have an infectious process that only an llmd would be able to treat.
I can't believe you have all those symptoms, and are exercising….wish I could do that!
nancy
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