Quantcast

Lyme Disease Support Network

Only partially positive?


#1

So I get a call from my primary care physician who admitted to me on Friday that she didn't know anything about Lyme Disease except that once you test positive you always test positive. She also told me Friday that she didn't know anyone who specialized in the field. Today she informs me that the tests for RA came back negative this time which is great. Then she proceeds to tell me that she consulted with an infectious disease doctor at a nearby university hospital who is familiar with Lyme. (wait...didn't she say she didn't know anyone???) She sent him a copy of my lap results and he said that it was technically negative based on CDC standards even though I did have all the necessary bands for a positive reading. (insert very confused look here) I asked how this could be especially when I was responding to the doxycycline? She goes on to say that 3 of the band were in the correct positioning but 2 of the bands were not. There for my lab result was partially positive. To me that is like telling a woman "you're partially pregnant". So I was given 2 choices. Accept this NEW diagnosis which in CDC's eyes means I'm negative for Lyme Disease and go back to square 1 of "we don't know what's wrong with you" or repeat the blood test in 2 weeks which would be 8 weeks from my original blood test. I chose repeat the blood test.
I then asked her what about my swollen lymph node behind my ear and the ear pain I'm having. Again she said she didn't know what was causing that as my white blood cell count was back into the normal range. (insert aggravated look here)

I'm thinking it's time to look for an immunologist. Someone that can look at my immune system and maybe get to the bottom of things.

Thoughts anyone? I'm really frustrated here. All of my symptoms point to Lyme Disease and the doxycycline was working. I was starting to feel human again. Now I'm back to joint pain, increased fatigue, decreased stamina, ear pain, and daily headaches.


#2

There is two sets run IgG and IgM. The IgM Western Blot test result is only meaningful during the first four weeks of illness. If you have been infected for longer than 4 to 6 weeks and the IgG Western Blot is still negative, it is highly likely that the IgM result is incorrect (e.g., a false positive). This does not mean that you are not ill, but it does suggest that the cause of illness is something other than the Lyme disease bacterium. Running the second IgG will confirm a negative diagnoses (for lyme)

40% or so of folks will have some temporary response to ABX because of its anti inflammatory effect not because its lyme. I'd suggest you see a rheumatologist, They specialize in autoimmune disease.

The tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria, Borrelia burgdorferi. Your immune system continues to make the antibodies for months or years after the infection is gone. This means that once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present. This makes a fortune for "lyme specialists" who continue to treat for a nonexistent disease.

There are literally hundreds of disorders that have "lyme symptoms"


#3

I would also check for Lyme prevalence in the county/state where you think you were bit by a tick.


#4

Lyme is very prevalent here. I also learned that the test the doctors are using here in Virginia have high false negative rates and they are supposed to notify patients of this. My doctor did not. Also, the lab that processed my original test states it’s positive for Lyme. The “specialist” she consulted said it is only partially positive. Hence my aggravation. I feel as though the specialist is telling her it’s partially positive so that I won’t push the issue. A lot of doctors are scared in this state thanks to the CDC. It’s only been in the last year that legislation was passed that stated doctors have to notify patients that the tests aren’t accurate.
At this point I just want to be treated appropriately. I don’t care if they call the disease Orange-pineapple disease. Just admit there’s an issue and treat it.


#5

That is not the case or even close to it. There are non certified commercial labs (such as igenex) performing "lyme tests" that have no science based interpretation. There is a two step process. Involving a DNA test and blot test. A negative on the blot test alone can be a positive. if there is no positive Elisha test. The two step process has a 97% accuracy for active lyme. The presence of lyme antibodies is meaningless without additional evidence. Labs do not interpret tests. They are required to disclose that fact. You are very close to being victimnized by the lyme lobby. Please proceed carefully.

The fact that the Virginia Medical society opposed the bill should be a strong clue. Given the thousands of dollars left lying on the table, its about standards of care not some massive coverup.


#6

First of all I’m not saying there’s a cover up. I am feeling a little defensive right now. Also I didn’t say the lab interpreted my test I said they processed it showing it to my doctor as positive.
I came to this site for support but I feel like I’m being lectured. I asked if anyone had experienced this issue before.


#7

I can direct you to a couple of Lyme sites that will give you all the support you want, if you want to go that route.But you know the what they say"be careful what you ask for,you might get it".


#8

Wow


#9

Heather, the way I see it, is that you have three choices.

A)You can finish out your Doxy Rx and be done with it.

B)You can go see a board certified I.D. doctor and do what he tells you.

C)Go see a LLMD, who will give you a ton of antibiotics and worthless supplements.

Other then that, I don't know what else to tell you.


#10

Yes there are people with similar experience. One of the moderators of this site, and a wonderful yoing artist. Both pursued lyme treatment despite dubiois evidence. Unfortunatly they are both dead. Liver toxicity from ABX. There is no such thing as parially positive. The bands on a western blot are used to find hundreds of diseases. Band 23 is associated with a number of diseases. HIV is one of them, yet no one is telling you you are partially positive for HIV.....



Heather said:

First of all I'm not saying there's a cover up. I am feeling a little defensive right now. Also I didn't say the lab interpreted my test I said they processed it showing it to my doctor as positive.
I came to this site for support but I feel like I'm being lectured. I asked if anyone had experienced this issue before.

#11


Hi! I also felt like I came for support but then felt lectured! I am now very thankful it caused me to look at this all in a different light. I think I have a fraud for a doctor who wanted me to have lyme so he could treat me. I too have symptoms, but luckily I feel better before getting the treatment he claimed would make me worse before better. I only had one band positive on the lyme test and I didn't like how pushy he was about his diagnosis.


Heather said:

First of all I'm not saying there's a cover up. I am feeling a little defensive right now. Also I didn't say the lab interpreted my test I said they processed it showing it to my doctor as positive.
I came to this site for support but I feel like I'm being lectured. I asked if anyone had experienced this issue before.

#12

Sorry if you feel like your being lectured to,but like I said earlier, if you want a more supportive Lyme site here is a popular one that has a similar topic on it's front page.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11330521-igenex-test-results-help-please

Quote from Pampe: You have Lyme....see a LLMD

Ok Heather,if that is what you want to hear, there it is.I can show you a few more similar sites if you want me too.


#13

No thank you. I am looking into seeing a Rheumatologist. Also, there aren’t any LLMD’s near me. I’m not looking for more antibiotics. I’ve already been on 4 rounds in 2 months: 1) sinus infection 2) Lyme diagnosis 3) cellulitis and outer ear infection with swollen lymph node 4) swollen lymph node. What I wanted to hear was if anyone else had been given the same BS story from a doctor that I’d been given. Had a doctor given a positive diagnosis and then change it to a “partially positive” diagnosis by the same doctor after being treated and after going through all the emotions one has when they’re told they have a disease. That is what I wanted. Not to hear the facts about the testing (I’ve researched those already). Not to hear about 2 poor souls who passed away (they’re not the only ones). And not to be warned about getting caught up in the legality of it all (because I really have no interest or energy to do so). I wanted to hear from other people with Lyme Disease who had gone through similar issues when first diagnosed. I wanted to know I wasn’t alone. Instead I feel like you and tj1 made talked to me like I am a naive child. I am an adult who deserves to be treated with respect. I am scared. I have never been in this situation before. I’m usually the caretaker not the other way around. My boyfriend is battling throat cancer and my grandmother is dying. I have a father whose health is failing and a sister with RRMS and Chrons. I’m raising 2 boys and working a full time job and had to quick my 2nd job. This isn’t a potty party. This is me being real about where and who I am right now. The way I was responded to was as if I was being lectured. The name of this page is lymediseasesupportnetwork. I figured empathy and support would be a given. I have luckily found some support and empathy in PB and SS and for that I am greatful.
Zach, I’m sure you and tj1 are really great guys (in fact one of my boys shares your name) but I ask you boath to work on your delivery and to think about what the person is really wanting and needing to hear when you respond. A lecture is not always the answer. You both I’m sure did not mean for your responses to me to sound as lectures, however that is how they were received and not only by me but by a friend of mine who is not a Lyme patient.
I am a counselor who works with at-risk kids with mental health diagnoses in the middle school setting. A little lesson: Scare tactics (unfortunately they are both dead) and talking down (ok Heather, if that is what you want to hear, there it is) do nothing but tell the person that you are responding to that you don’t care and are unwilling to validate their feelings. Again, I’m sure that was not your intentions, but those were the results.


#14

You're going to to see a Rheumatologist.Smart move.I hope he/she can give you the answers you are looking for.

Take care.


#15

Yes, I am also confused about the attitude on this page. I too had been diagnosed with Lyme and was looking for support in receiving that diagnosis. Now these people on this website have convinced me my doctor may be unscrupulous and I am grateful for the warning signals and will go with my gut and make sure of things before I proceed. However, it IS scary and I felt like I had walked into a strange debate about the two sides of Lyme and you are either a believer in the CDC and regular doctors OR the natural/integrative path. I didn't think it would be so hostile on one side or the other. Can't there be something in the middle???? Especially since the testing is not perfect? I definitely have something wrong with me. I don't want it to be Lyme or any disease! I just wanted some hormones. But I do think the title of this website is misleading since it does seem like it should be some emotional support for those of us uneducated in Lyme and wanting to know more. I agree being talked down to isn't good. Just because you all are educated in this subject does not mean the rest of us are.


#16

Lymeland is such an interesting place.It's so much better then reality TV.


#17

Yes it is in some ways.


#18

Thank you.

Zach said:

You're going to to see a Rheumatologist.Smart move.I hope he/she can give you the answers you are looking for.

Take care.


#19

You are talking to two guys dealing with lyme, not other counselors. These guys took time to share what they know. Wonder how they or anyone else will feel after hearing you didn't like the way they answered. I'm not thinking folks are going to line up to answer your concerns.

Understand there are BIG differences in personalities and approaches. One of them is an experienced patient. The other still mourning the los of his best friend of 40 years - Willy Burgdorfer. Your questions have been respected and answered honestly. THERE IS NO MIDDLE ROAD. The only folks questioning "accuracy" is the chronic Lyme disease believers. This site deals with Post-treatment Lyme Disease Syndrome. Trying to cure a disease that one already had (or may not have ever had) is simply NOT a rational approach. You have positive "bands for measles yet I doubt you have measles. Either you were exposed, already had them, or had an immunization. By the same token I had a serious case of mumps when I was six. An MMR wont do me a bit od good now. I'm still sterile. The same with "Cat Scratch fever I had when I was 15 or the actual Lyme I had when I was 25. (lab accident)

Its terrifying to see the LLMD fiction woven into rational thought processes. I'm sorry you find it disturbing that I am mourning the loss of two friends who got sucked into the bad science of Lyme. One lived on a continent that has NEVER had a case of lyme, but was so convinced by his Lyme Doc that he must of got it from some else who brought a tick home from a trip abroad (Ticks don't work that way)

You got the science guys. the others may come forward as they have in the past. In the meantime good luck with your rheumy appointment. I'd message Grump Cat (she's not been feeling well) to see her hints for preparing for that appointment. If you get your ducks in a row, you will get a lot more out of it.


#20

I'm truly sorry for your losses, however I'm new to this road and scared so being lectured and fussed at is not what I or anyone needs. I appreciated your information on the tests and the idea behind seeing a rheumatologist, but I had an issue with you belittling me. I understand completely there are BIG differences in personalities and approaches. I work in the counseling field and how I respond to a client is not necessarily the same way as another co-worker would. I also recognize when I am not in the best place to respond to a person because what that client is dealing with hits to close to home and therefore I'm not going to be therapeutic. Trying to make me feel bad isn't the way to go about things nor will it get an apology from me as I'm not sorry for expressing how your approach made me feel. I am not alone in feeling this way either. I do not see anywhere on here where it says that this is for post-Lyme's support only. And either way, I was treated prior to joining the group...I made that very clear. You are knowledgeable but our personalities clash. So ask you with respect to not comment on my discussions anymore.

tj1 said:

You are talking to two guys dealing with lyme, not other counselors. These guys took time to share what they know. Wonder how they or anyone else will feel after hearing you didn't like the way they answered. I'm not thinking folks are going to line up to answer your concerns.

Understand there are BIG differences in personalities and approaches. One of them is an experienced patient. The other still mourning the los of his best friend of 40 years - Willy Burgdorfer. Your questions have been respected and answered honestly. THERE IS NO MIDDLE ROAD. The only folks questioning "accuracy" is the chronic Lyme disease believers. This site deals with Post-treatment Lyme Disease Syndrome. Trying to cure a disease that one already had (or may not have ever had) is simply NOT a rational approach. You have positive "bands for measles yet I doubt you have measles. Either you were exposed, already had them, or had an immunization. By the same token I had a serious case of mumps when I was six. An MMR wont do me a bit od good now. I'm still sterile. The same with "Cat Scratch fever I had when I was 15 or the actual Lyme I had when I was 25. (lab accident)

Its terrifying to see the LLMD fiction woven into rational thought processes. I'm sorry you find it disturbing that I am mourning the loss of two friends who got sucked into the bad science of Lyme. One lived on a continent that has NEVER had a case of lyme, but was so convinced by his Lyme Doc that he must of got it from some else who brought a tick home from a trip abroad (Ticks don't work that way)

You got the science guys. the others may come forward as they have in the past. In the meantime good luck with your rheumy appointment. I'd message Grump Cat (she's not been feeling well) to see her hints for preparing for that appointment. If you get your ducks in a row, you will get a lot more out of it.