Blood results are in.....

[drsdonthelp]

I had some blood drawn by my LLMD on Oct 7th and I received the phone call today about the results. Everything came back negative. My LLMD wants to keep me on the doxy and he asked how I have reacted to the treatment so far. I mentioned my fatigue, twitching muscles and minor pain. I did also mention how the hand tremor that I have had for close to a year , appeared to ease up a bit, enough for the family to notice.

What does this all mean? Has anyone been dx'd with having lyme without the blood work being positive for it? I have heard people have been dx'd, mostly because they had other evidence, "bulls eye rash" or a tick actually being found, but for me, its been a long time, and I am worried that , THAT is going to be a problem for me!

I am not going to give up, but it gets so tiring to have your body not cooperate between not feeling well and the tests not backing it up.

confused,
Pam :(

[drsdonthelp]

I have had SSD benefits for one year. I just had my year review and had to go through their drs. for an exam. To me, I had alot of proof that showed.....

I had just received the fresnel "sticker" prism for my glasses. I don't know if you are familiar with that, but there are small lines cutting across the whole lens from top to bottom. When I was asked to do the vision test, they had me standing in a hallway and asked me to close one eye to read the chart. I closed my left eye first and started to tip over. I had no balance. My right lens had the prism in it, so when trying to see through it, I couldn't see at all. Very blurry, and I just couldn't see through the lens, (it's made for both eyes to be open).

Then, I lifted my glasses up, and since I have optic nerve damage in the right eye, and no balance when closing the left eye, I still could not do the test. Basically I failed it big time.. Then, I had the physical part of the test. I had the neuro reflex test done and my shoe literally flew off of my foot, (very very hyperreflexia) My hand tremor was very prominent and the doc. could not take her eyes off of how much my hand would tremble. My mom had to fill out some of the paperwork becuase 1, I couldn't see the small print too good, and 2, my tremor is in my left hand , and I am left handed, so I had a hard time writing.

During my psyche testing, I cried, and tried to explain the hel l and torture I have been through with having 5 surgeries total, 4 of the eyes and still not better. I did not do well on the memory test, forgot some things that I was supposed to remember, and then had to count backwards by 3's starting at 20, I had to use my fingers, because I couldn't do it in my head. I felt like such a dummy, anyway,

I had this exam in May, and by June, I received the letter that I am better, and no longer qualified for ssd. I was shocked!!! I appealed the very next day.
I told my SSD representative my whole story and he agreed that I fight it. So, here I am waiting to find out if they still find me disabled.

It's very hard to do much of anything with seizure disorder, visual impairments, hand tremors, graves disease and all of its symptoms, optic nerve damage, double vision, cervical disc bulges , and extreme fatigue. I have practically a full time job just going to my doc. appts. Also, my depression and anxiety were the biggest things that helped me get SSD, Can you believe that!!! With all of those issues, and me being depressed and anxious is what helped me... wow,

As of right now, I sit and wait for their final answer, if they still deny me, I get my lawyer involved and go to another hearing with the ALJ.

If by some crazy chance that I have lyme disease too on top of everything else, ya think it will help, naaa, probably not, As long as I stay depressed, huh.

That to me is depressing!!

Pam

[ewford]

if you tried filing a claim and was denied by SS, you can use the HHV6 IFA titre test to determine CFS symptoms.  any other pos viral infection adds to the sickness.  Can't remember why you were denied SS bennies.

[drsdonthelp]

Hi, Thanks for the info. I have been trying to read and grasp it all, some days my brain works well, others, I just don't seem to get it, lol

I have to start another post, LOL, another question I have,,,,,,, Of course right ?!

Talk to you soon, Pam

[ewford]

  Today I spoke to the aide of the discoverer of HHV6 at the HHV6 Foundation.  His name is Josh.  He said i was right on the money BUT that the Labcorp HHV6 test with a high titre was not THE best test.  it is an ELISA test.  He said the most definative for CFS/immunosuppression is a IFA HHV6 test done by Focus diagnostics..a division of Quest.  More info can be found at the HHV6Foundation website.

[drsdonthelp]

ewford, thanks for your information, I went and checked it out already, haha. That's so great that you can email Dr. Nicolson and ask questions!!

wonko, LOL, better late than never,, glad you joined the party to share your experience!!

carrie, Thank you so much also, I will keep the faith!!

Pam

[carrie235]

Hi Pam,

There is another girl on the forum that I correspond with on the side and she also tested negative with Igenex.  However, after I think three months on ABX and retested, she was positive!  SO HANG IN THERE, TAKE YOUR ABX AND RETEST.....  Like the others said, having the positive test gives you a sense of relief but many people don't have positive tests and find resolution with ABX treatment....

[wonko]

I'm late to the party (as usual!) but, for what it is worth, at my most sick I was CDC negative for Lyme by Igenex.  3 Quest ELISA's given over the course of a year were all negative (during my "limbo" days).

My Igenex IgM showed more bands 1.5 years into treatment than it did before treatment.

My most recent full Igenex western blot was negative, but I am still sick with (a suspected Bart-like) coinfection.  (I'm much improved, but by no measure would I say that I am well or cured.)

So, I never had positive coinfection tests, never had a CDC positive western blot.  I think my first Igenex western blot was considered IgG positive by Igenex standards, but only barely met minimum criteria for such.

I agree with the above from Ness:  Abx is relatively low-risk, so if other conditions have been ruled out (at least for now), and you would otherwise be in "limbo," then giving the LLMD and abx more time seems sensible.

While I am still sick, my treatment (based on clinical signs, not lab results) has allowed me to recover much of my life.

I would suggest that you keep an open mind and do consider the mainstream approach again if you get nowhere with abx, but for now it sounds like you are making reasonable choices by sticking with it to see how it goes...

[ewford]

I e mailed Dr Nicolson to inquire as to a high titre HHV6 and reactivation of latent bacterial infections and how they can become morbid if left untreated.  Hope to hear back soon.  If I do, I will post here.

[drsdonthelp]

All I can say is, THANK YOU, THANK YOU , THANK YOU!!!! I was having a hard time with this, and after reading all of the responses, I am actually relieved!!!
It's amazing when you try to find the answers for yourself, you tend to search as if "you are a doc" lol,,, I usually search things that a doctor.has dx'd me with to get informed. But, when your search goes from one symptom to the next and it grows and grows, you find your own "possible dx" before the docs. even say it.

I did start to take my probiotics.. I have been a good girl and take it 4 hrs. after my first dose of doxy in the am. I am not on magnesium right now, but I will talk with Doc. C when I see him.

Just alittle update on how I am feeling on the doxy..... Tired by 2pm every single day, fall asleep at 3pm,,, everday.... I had muscle twitching in my left thumb twice today and lip twitching (so bizarre) , I have had left leg pain on the outer side of the back of my  knee near the upper calf (have no idea what that part of the leg is called) but it hurts. Tremor in my left hand ,, still there, but not as bad.

I know you guys are right as far as the doc. doing a trial run of the meds. I am thinking the same thing , that he is going to retest my blood to see if anything has stirred up!!

I am soooooo going back to him!!! I will not give up. I am in the right place all the way around.... HERE ESPECIALLY!!! I cannot tell you all how much I appreciate all the time you take on answering and helping me through all of this. I feel like a brick was lifted off my chest after reading everyone's comments.

Love you all!!!!!!!!!
Pam :))

[Ness78]

Hi Pam,

I am so sorry for your uncertainty.  Being in medical limbo...especially in the matters of the brain and nervous system...is it's own kind of illness.  My illness has been harder on my psychologically than physically.

I think you need to keep on keeping on with the Lyme issue.  It is an art and not a science.  I remember getting tested for late stage HIV because of the neuro stuff and feeling happy that I was doing a reliable test. WOW...it is practically a yes or no! My experience up until then had been less than black and white...and that is how it is with Lyme.

If your doc't seemed to think you are in the right place...than go back to that place.  Antibiotic treatment is fairly low risk...so if you do a risk benefit analysis it's worth it....

I was rooting for you to have a postive test...but not because a negative test means it's not lyme...but because of the psychological relief of having something concrete infront of you.

Don't jump to any conclusions, just follow the course you are on.  You are not a doctor and therefore cannot make the call of Lyme or not...leave that to the expert.

All the best,
Ness

[JackieCalifornia]

Yeah, my LLMD was quite surprised that I had positive LabCorp tests, given how long I had been really ill.  At that time, I didn't understand about the vagaries of the testing regime, and it was only later when I learned more that that I understood why the doc was so startled.  So I guess I found the Spanish galleon, only no doubloons in the hold...unless you count the joy of being well again.  ... But yeah, I'll settle for that.  heh.

[ewford]

You are right, we are not in her shoes.  Just wondering his course and methodology.  A pos labcorp WB is worth it's weight in gold, but is elusive as a Spanish Galleon.

Pam, just offering possibilities for you to consider, to get you to the place you need to be.

[JackieCalifornia]

ewford,

My LLMD used LabCorp for the basic Lyme tests and used IGeneX for the PCR-based Lyme test.  So LabCorp is useful in some contexts.  I've not heard the same about some other national labs that will remain nameless here.

I'd also guess that maybe Pam's LLMD is moving stately, starting with a challenge course of doxy and tracking her reactions to it, may well retest at the next appointment to see what immune response the doxy stirred up, and then think about what coinfections to test for if the symptoms were not clear initially to induce suspicion of coinfection.

Sounds to untrained lil ole me that he's being measured in the approach, but of course don't know what he's thinking.

In Pam's shoes, I'd stick with the program for a while and see where the doc takes it.  
========================================
Pam,

I know it's frustrating and slow and it's not the way we are used to docs diagnosing and treating and bam you're done, but it's just the way it is.  Sometimes being 'cutting edge' just isn't any fun.

[ewford]

Pam.   What the others have said is correct.  The ABX will trigger a response.  I wonder what lab he used, if he did a preliminary set of labs with Labcorp just for "sh*&s and giggles" and is going to do the next w/ Igenex?  

  Did he test your cd57 and Human Herpes Virus titre to see if you have a compromised immune system?  We all have HHV6 as a latent infection that sits dormant in the spinal cord, much like HHV1 & 2.  The HHV6 and 1&2 titres will show high (active response) if there is an immunosuppressed condition.  Bartonella and Babesia can be "held in check" by our immune system if it is healthy, but when compromised they are very nasty.  HHV6 has been implicated in MS.  Dr Nicolson says People that have been diaged with MS and other autoimmune diseases have viral, bacterial and fungal concurrant illnesses leading to morbidity.  (HHV6+Lymes/Babesia/Bartonella+Yeast =CFS, total immune dysfunction.

  let us know where tests were done, and let me know about the HHV6.  Anyone following this post needs to read up on HHV6 and its relation w/ coinfections.   Might be a way to prove illness w/ insurance or dissability.  TONS of articles on PubMed, Oxford JOM, etc on HHV6 reactivation and immunosuppression/devestation.  Couple that with positive Bart and Babesia tests.  BAM!!!  No denial of that .

[JackieCalifornia]

Pam,

I didn't recall that you are seeing a bona fide LLMD -- that's good.  He will know that the negative tests are NOT the final word, so when you see him next, I would ask what his next step is.

And you don't need to wait till you are there to get the test results -- they can mail them to you.  

Something else an LLMD may do is re-test you after you have finished this initial course of doxy, because that can stir up the immune system to react to the bacteria again, which then can result in positive tests.  It's called an 'antibiotic challenge.'  But even then, the tests are not perfect.

You are right, the Lyme bacteria can and do hide in slimy shields they create called 'biofilms' that make the bugs unfindable by your immune system.  I don't know that that has a connection with other cysts your body may have, so that's a question for the doc.  

Be sure the doc knows about that kind of history -- it's very important to convey everything to the doc, even if it doesn't seem important to you, because it could mean something to the doc.  Just like taking probiotics -- it didn't seem important and you decided not to take them, and it's that kind of selectivity that can confuse the whole picture the doc is trying to get of your condition.  You're paying him for his expertise, so use it to the fullest.  Sometimes changes have to be made in the course of action, but that needs to be a team effort between you and your doc.

I don't know that calling asking for more tests is useful; the doc will tell you what the next steps are in his approach when he sees you.  It sounds like the do is proceeding stepwise, and that is the right thing to do imo.  Diagnosis of tickborne diseases is an art, so give the artist a chance to do his thing.

Does your doc have you on magnesium or other supplements?  Ask when you are next there and be sure to take a list to the doc of all the supplements you are taking, herbal and otherwise.  They all have an effect.

Take care -- you're making progress, even if it doesn't feel like it sometimes.

[carrie235]

Hi Pam,

I am so very sorry that you did not get any anwsers to your woes.  I am wondering, did you LLMD use Igenex Labs for your blood work?  

Carrie

[drsdonthelp]

Thanks Jackie, I will call my LLMD and ask about some of these tests that you have suggested and request to have my copies ready when I go back Nov. 4th.
I was feeling so down about all of this, but at least now I know that these tests look for the antibodies and not the bacteria, so if in my case, this has been there for a long long time, they could be hiding very well right?
I have seen that they can form into cysts,,, I have cysts on my ovaries all of the time. I have had a lump removed in my left breast at the age of 27 and it was considered a fibroid tumor.. Are these disgusting little critters forming into cysts and hiding?

Big Hugs to you!!
Pam

[drsdonthelp]

Thank you...
I have graves disease , so as far as my autoimmune being out of whack,, it is..

I have had all other tests done, RA, Lupus,,, etc.. etc... ANA, all negative,,, my vit. D is deficient and I am on 50,000 units 1x week.  I am on Zanaflex for my spasms and cramps, I take Celexa for anxiety, Kepra for seizure disorder and two dosages of synthroid, .75 for 4 days and .88 for 3 days.

The doc. that I see, is well known for the lyme community. He was a past president of the ILADS, and has a website for his lyme project. I respect his judgement and his opinion, but my husband questions our reason for going back 4 1/2 hrs. if this isn't lyme. I am actually wondering if he wants to see me back to discuss further treatment eventhough the results were negative.

When I did see him, he went over my list of symptoms and diagnosis and believes that I have come to the right place for answers. I have watched his lectures online and interviews he has done, and I believe he looks beyond the bloodwork and looks at the "whole" picture.

I think yesterday, it was more so trying to get it across to my husband why I would need to go back. I was extremely frustrated and felt like I hit another dead end.

As far as the doxy, today starts my 10th day. So far, I have not had anything major happen, ie) seizures, or extreme dizziness,,, the only thing that I have had are, some stomach pain, finger,lip and cheek twitching, pain in my upper calf close to my knee, and two days of slight ankle pain. My left hand tremor appears to still be lessened alittle but its still there. My sinuses are still clogged up even though I had sinus surgery in Feb of this year, my nose is still numb and I still can't breath. You would think being on antibiotics for 10 days would help clear it up.

Thanks for all the help,
Pam

[nutrinut_bob]

So sorry to hear that the quest for an answer that you're on hasn't ended.  Though it no doubt puts you down a bit, I'd certainly find out about the test methods used, and ask for the others Jackie mentioned.

[ree427]

I guess you could ask what the agenda is for the next appointment. Usually a LLMD outlines a plan of action and orders additional testing for endrocrine disorders,  immune system abnormalities, and general tests like a CBC because Lyme effects every aspect of the body. I would want to dig a little deeper.  Rule out autoimmune disorders and vitamin D deficiency to name a few. I would also want to know what the next step is because Doxy is not typically used in late stage Lyme from what I have been told by my doctor and if it is used, it is used in high doses or intravenously. If all he has to offer is Doxy, I would question that. I think there are better antibiotics for late stage Lyme and there are different antibiotics used for co-infections. Did your doctor suggest you take magnesium for your muscle twitches or pain medication for your pain? My experience is a LLMD covers all these areas.  I wouldn't throw in the towel yet. I had to see several LLMDs before finding the right one and I am still not sure I have the right one. I am certainly not saying you don't have the right one, I would just want to know if he planned go a little further than the Doxy and cover more bases.

[drsdonthelp]

My llmd is 41/2 hrs away, my next appt. Is nov. 4th. My husband doesn't think we need to drive back there if he already gave my results over the phone. I seriously am very confused because what would be the reason to go back, if he is going to call me to check in with me and how I am doing on the doxy.?
Apparently even the confections of Bart. Babesia and erlichiosis (sp?) are all neg. Too!! Maybe I don't have Lyme ,,,, here I go again feeling lost at sea!!!! I am so frustrated,
What should I expect at the next appt ?? I feel like it will be a waste of time. I'm sorry for sounding so negative, I am just sick of trying to figure out what the heck is wrong and Still no answers,,

Frustrated and ready to throw in the towel,
Pam

[ree427]

Lyme is a clinical diagnosis based on symptoms because there is no test that is 100% accurate. I have a negative Lyme test, but have all the symptoms and have other tests including my SPECT Scan and CD57 which point towards a Lyme diagnosis. I did have a postive Bartonella test done by Fry Laboratories which looks at the actual bacteria in the blood. As Jackie said, a negative test is very common and LLMDs know that.

[JackieCalifornia]

Pam,

It's not unusual for the 'standard' Lyme tests to come back negative.  The reason is that the tests don't look for the bacteria in your blood; the tests look for the antibodies your immune system makes against the bacteria.

Our bodies give up making antibodies after a while, figuring they must have wiped out the invaders, and so the tests do not detect the antibodies.

There is another test that LLMDs use that looks for DNA of the Lyme bacteria instead of immune system antibodies, but not all docs use the DNA test.

It is imo VERY important for you to get and keep copies of ALL your test results.  You will need that history going forward, and trusting the doc's office not to lose or misfile or forget to send them to a new doc sometime is not a good plan, in my experience.

Take charge and get copies of ALL your tests, and when you have them, post the results here and we can (in our uneducated way) comment on them, based on our personal experiences.

The test results are yours -- you paid for them, and if the file clerk at the doc's office gives you static, ask to talk to the office manager or the nurse.

Then when you have those results, let us know and we can try to help you read them.

But do NOT be discouraged by the negative results:  it's very very common.  Lyme docs know that.  Now go call the doc's office and ask for copies and tell them you'll pick them up, if that works for you.

And ALWAYS keep your own set of test results -- don't take them and give them to another doc.  Things disappear regularly, in my experience.