Lyme testing

[roxie60]

not yet. Had a LOW CD57, waiting on IGenex lab results....maybe tomorrow

I don't remember... do you have a Lyme dx?

 

[SOC]

not yet. Had a LOW CD57, waiting on IGenex lab results....maybe tomorrow

I don't know whether to hope you have Lyme (with some hope of treatment and continued disability payments) or not (since no one wants to have Lyme).

 

[roxie60]

I don't know whether to hope you have Lyme (with some hope of treatment and continued disability payments) or not (since no one wants to have Lyme).

That is exactly what I have been teeling peple, to have it with the hope of finally getting treated properly and maybe some finacial support or to not have it and continue trying to figure out what is wrong. Just have to take one day at a time. If it shows it then plan next steps, if doesnt show )which I now realize after spending al that money it is possible it will come back negative) have a good cry an plan next steps (just like a decision tree in ITS only harder to get at the final answer).

 

[vamah]

That is exactly what I have been teeling peple, to have it with the hope of finally getting treated properly and maybe some finacial support or to not have it and continue trying to figure out what is wrong. Just have to take one day at a time. If it shows it then plan next steps, if doesnt show )which I now realize after spending al that money it is possible it will come back negative) have a good cry an plan next steps (just like a decision tree in ITS only harder to get at the final answer).

I understand how you are feeling. I paid a lot of money for igenex lyme test and galaxy bartoknella test and felt like an idiot for spending the money when they were both negative (although I still have questions about the lyme). Also felt like an idiot for being disapointed at now having hard-to-treat diseases. But even a hard to treat disease seems more hopeful than having a mystery illness.

Even if your test is negative, its still good to get that result. Another thing to cross off the list and narrow down the list of suspects.

 

[roxie60]

I understand how you are feeling. I paid a lot of money for igenex lyme test and galaxy bartoknella test and felt like an idiot for spending the money when they were both negative (although I still have questions about the lyme). Also felt like an idiot for being disapointed at now having hard-to-treat diseases. But even a hard to treat disease seems more hopeful than having a mystery illness.

Even if your test is negative, its still good to get that result. Another thing to cross off the list and narrow down the list of suspects.

I'm sorry to hear you have not got answers from the Lyme testing, they are so expensive. Having mystery illness is maddening.

Not sure I'll be able to sleep tonight wondering if the IGenex lab found anything. I'm just weary of the process and disappointments. If it comes back negative it will be hard to justtify even more expensive co-infction tests.

 

[roxie60]

I understand how you are feeling. I paid a lot of money for igenex lyme test and galaxy bartoknella test and felt like an idiot for spending the money when they were both negative (although I still have questions about the lyme). Also felt like an idiot for being disapointed at now having hard-to-treat diseases. But even a hard to treat disease seems more hopeful than having a mystery illness.

Even if your test is negative, its still good to get that result. Another thing to cross off the list and narrow down the list of suspects.

I feel I am runing out of things to cross off the list

 

[roxie60]

I understand how you are feeling. I paid a lot of money for igenex lyme test and galaxy bartoknella test and felt like an idiot for spending the money when they were both negative (although I still have questions about the lyme). Also felt like an idiot for being disapointed at now having hard-to-treat diseases. But even a hard to treat disease seems more hopeful than having a mystery illness.

Even if your test is negative, its still good to get that result. Another thing to cross off the list and narrow down the list of suspects.

@vamah You said your IGenex and Bartonella tests were negative, did you have a CD57 test and if so what was the Abs CD57?

What plans do you have (not sure how long ago you had your Lyme tests) to try and determine what is causing your health issues?

 

[roxie60]

I feel like a prisoner hoping for a stay of execution of my future by getting answers, lab results that will point to something.......think I'll have some ice cream even tho I shouldn't

 

[JT1024]

Lyme testing is still horrific...as is the treatment. Below are excerpts from the Lyme Disease Manifesto For My Dear Colleagues, written by Dr. Nevena Zubcevik - a Lyme patient and a physician:

Ticks carry many pathogens, not just the Borrelia Burgdorferi, but Borellia Hermsii, Babesia, Bartonella, Anaplasmosis, Erlichiosis, Rocky Mountain Spotted Fever, amongst many.

As physicians we need better tools. We have no good tests for early Lyme disease. Only about 11% of people are positive on our standard tests within the first 4-6 weeks of presentation. Even the most sophisticated testing with the Lyme C6 Peptide reveals only 66.5% of the patients with Lyme Disease. If left untreated this illness can affect every system in the body. Studies reveal the spirochetes are faster than all of our blood cells and difficult for our immune system to conquer. The damage can be permanent and lead to complete disability.


I am fortunate that I belong to an institution which sets standard for the medical world. I am protected and nurtured by three wonderful physicians. Two of which have had a personal experience with Lyme. Two of the three physicians do not charge me for their services, the third one takes insurance. I am unable to afford treatment otherwise. It is expensive on so many levels.

Most people do not have this support. They are very sick and very alone. Abandoned by their families and their doctors. Their bodes very ill, unable to advocate for themselves, they vanish. Many become misdiagnosed with neurological illnesses, psychiatric illnesses and become home bound. Their lives previously rich and healthy are now non-existent. Some take their own lives.

We have to change the current situation. We have to figure out the Tick Borne Infections, and what makes our patients ill. We have to protect, trust and take care of our patients. We, after all, are Care Givers.

Link to the full text is here: http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/

 

[vamah]

@vamah You said your IGenex and Bartonella tests were negative, did you have a CD57 test and if so what was the Abs CD57?

What plans do you have (not sure how long ago you had your Lyme tests) to try and determine what is causing your health issues?

My cd57 was 51, so low enough to be of concern. The lyme test was almost a year ago. Right now my doc has me on abx as an experiment to see if they make me feel better. I have thought about retesting for lyme after have been on abx for a few weeks, but it is so expensive I have mixed feelings.

After negative lyme test, I tested very high for hhv6 and am taking valcyte for that. Thinking I may just needto give that time. I have read people on this forum who took 12-18 mos to see improvement with valcyte and I have been on only 8 mos. It may just be impatience making me look back at lyme.

Things that point to lyme for me: know have been bitten by deer ticks, live in a lyme area, low cd57, pain in opposite joints (left shoulder and right hip amd knee), sudden onset anxiety.

Against: negative igenex test,no bullseye rash (although may have been bit the same time I got poison ivy so didn't see), joint pain is without swelling, would it really take over 10 years for most symptoms to emerge?

Hate, hate, hate this illness.

 

[roxie60]

Doctor's office did not call me back today so got to go thru another night of wondering about my IGenex results. I dont feel like calling IGenex a fourth time to be told 'should be done by end of day today and faxed to your Dr tomorrow'....I've figured out that is their pat answer for patients who keep calling about results.

 

[vamah]

Doctor's office did not call me back today so got to go thru another night of wondering about my IGenex results. I dont feel like calling IGenex a fourth time to be told 'should be done by end of day today and faxed to your Dr tomorrow'....I've figured out that is their pat answer for patients who keep calling about results.

Mine seemed go take forever too. Then I got email from my doctor and was trying to read tiny print on my cell phone. Hang in there.

 

[roxie60]

My cd57 was 51, so low enough to be of concern. The lyme test was almost a year ago. Right now my doc has me on abx as an experiment to see if they make me feel better. I have thought about retesting for lyme after have been on abx for a few weeks, but it is so expensive I have mixed feelings.

After negative lyme test, I tested very high for hhv6 and am taking valcyte for that. Thinking I may just needto give that time. I have read people on this forum who took 12-18 mos to see improvement with valcyte and I have been on only 8 mos. It may just be impatience making me look back at lyme.

Things that point to lyme for me: know have been bitten by deer ticks, live in a lyme area, low cd57, pain in opposite joints (left shoulder and right hip amd knee), sudden onset anxiety.

Against: negative igenex test,no bullseye rash (although may have been bit the same time I got poison ivy so didn't see), joint pain is without swelling, would it really take over 10 years for most symptoms to emerge?

Hate, hate, hate this illness.

@vamah So are you being treated for hhv6? I asked for HHV6 2-3 times, most recent 4 weeks ago, and told no, not now (all I could think was why not now but forgot to ask Dr why when saw her). So you do not have Lyme or do you think it was just 'hiding' in another form so did not show up on all the Lyme/co-infections tests you did?

Sorry just saw where you said you are treating the hhv6

 

[Creekee]

Gonna jump in here to say my new Lyme literate, Burrascano and ILADS following provider had me send blood to Advanced Labs for their spirochete culture. That's after an inconclusive ELISA, a completely negative Labcorp Western Blot (both ordered by previous provider) and a clinical diagnosis of Lyme and Bartonella. CD57 was 70 a year ago and is now 40.

Just heard the eight week Advanced Lab microscope check shows absolutely nothing.

I realize this is kind of a lose-lose. You either come out with a positive for Lyme, or you come out with a not-entirely-solid negative. But I'm sure tired of spending all this money for no definitive results.

OTOH, I'm now positive by lab for mycoplasma, EBV, HHV-6, protomyxzoa and another bacteria, and have higher-than-should-be-there antibodies to Rocky Mountain Spotted Fever. Plenty to work on!

 

[vamah]

@vamah So are you being treated for hhv6? I asked for HHV6 2-3 times, most recent 4 weeks ago, and told no, not now (all I could think was why not now but forgot to ask Dr why when saw her). So you do not have Lyme or do you think it was just 'hiding' in another form so did not show up on all the Lyme/co-infections tests you did?

Sorry just saw where you said you are treating the hhv6

Yes, I'm taking valcyte for hhv6 right now. I had to pay for the test myself because the infectious disease specialist with my hmo refused to order it.

I just don't know about the lyme. The test came back with only 2 positive and 2 indeterminate bands -- not enough for a positive, but lyme is good at hiding and the bands I had are significant ones (can't remember the numbers right now).

Think this will be an ongoing conversation with doctor based on how much improvement I make on valcyte.

 

[roxie60]

So is your EBV dx by titer? If so what level was your EBV? how does one test for mycoplasma, HHV6 and protomyxzoa? Just have a feeling my IGenex is going to be negative for Lyme.....anther dead end expected.

 

[roxie60]

Yes, I'm taking valcyte for hhv6 right now. I had to pay for the test myself because the infectious disease specialist with my hmo refused to order it.

I just don't know about the lyme. The test came back with only 2 positive and 2 indeterminate bands -- not enough for a positive, but lyme is good at hiding and the bands I had are significant ones (can't remember the numbers right now).

Think this will be an ongoing conversation with doctor based on how much improvement I make on valcyte.

does valcyte also treat lyme, are you expecting to get better by this addressing both HHV6 and lyme? I need to look up the symps for HHV6, I assume since it is a virus it can flare up, calm down and flare up again and one needs to be tested when there is a flare up????

 

[vamah]

does valcyte also treat lyme, are you expecting to get better by this addressing both HHV6 and lyme? I need to look up the symps for HHV6, I assume since it is a virus it can flare up, calm down and flare up again and one needs to be tested when there is a flare up????

Valcyte is just for hhv6, although it works against other herpes viruses as well. Have never seen that you need to be tested during a flare up. The antibodies remain in your blood for a long time, decreasing gradually, so they can still tell if they are higher than for someone who simply had the disease as a child (95% of people have). One doc tried to tell me that ANY antibodies are justnleftover from childhood illness. This is bullshit, it is the level that counts. 1:80 or lower is normal. Mine was 1:1280. Also it is the igg antibodies that are more important than igm because they are long-term. Meaning it is a reactivated infection rather than you just happen tobe one of the 5% who didn't catch the virus until you were an adult.

I am only half-assedly addressing the lyme issue right now. My doc proscribed antibiotics to see if I feel better on them. Also bought some cat's claw, which is supposed to fight lyme in biofilm form. But that's a whole other topic thread. :thumbdown:

 

[roxie60]

The nurse called today, said my IGeex test results were negative. I called her back about 10 mins later and asked her to ask the doctor what then causes low CD57 if not Lyme? She said she would ask.

I now expect my company to pull the disability that I got for one month. The one month payment let me know how helpful it would be to have that.

I know I should be grateful the test was negative for Borellia but at the same time I am now back at wondering what is wrong. I have been in bed all day, about 15 hours, just got up 10 mins ago and wanted to update this thread and already body feel waek, fatigued and want to lay down but so tired of laying down, but tired if sit up. Seems no way to get ahead of this mystery.

It seems doctors say I'm ok but cant explain why sometimes my labs are 'weird'. I need energy and better sleep. I hope I'm not in a spiral of lower expectations.

Really no idea what to do now....

thanks everyone for you support and ideas through all this madness.

 

[Sushi]

The nurse called today, said my IGeex test results were negative. I called her back about 10 mins later and asked her to ask the doctor what then causes low CD57 if not Lyme? She said she would ask.

I now expect my company to pull the disability that I got for one month. The one month payment let me know how helpful it would be to have that.

I know I should be grateful the test was negative for Borellia but at the same time I am now back at wondering what is wrong. I have been in bed all day, about 15 hours, just got up 10 mins ago and wanted to update this thread and already body feel waek, fatigued and want to lay down but so tired of laying down, but tired if sit up. Seems no way to get ahead of this mystery.

It seems doctors say I'm ok but cant explain why sometimes my labs are 'weird'. I need energy and better sleep. I hope I'm not in a spiral of lower expectations.

Really no idea what to do now....

thanks everyone for you support and ideas through all this madness.

Roxie, get a copy of the IgeneX report and post the results here. They are subject to doctor interpretation. It is not black and white, and some, like mine, are indeterminate, others may just be read incorrectly. He might be using CDC criteria which are very doubtful.

Best,
Sushi