Going Down The Chronic Lyme Road

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Date Joined May 2010
Total Posts : 1
   Posted 5/6/2010 3:26 PM (GMT -7)   
I've recently been to the doctor to have some tests done for symptoms that I once feared were MS. The MRI tests (and blood tests across the board) has pretty much cleared me in my doctors eyes as someone who really doesn't have a serious medical issue. None of the lesions one sees with MS I guess.

I was given the option to see a neurologist and she pretty much came to the same conclusion as my primary care doctor. At this point I feel like I'm on a dead end road. Neither doctor seemed to offer any other suggestions or followup. Its like live with it - tough it out. Yet as time goes on I feel new symptoms crop up and I'm an accelerated path to not being able to function. In doing my own research I did mention Lyme to my primary care doctor, but he only seemed to be concerned if I had been bitten recently. I mentioned an incident with ticks 10 years ago, but he didn't really seem to want to follow up on that. And to be fair I didn't push. I was just fishing for ideas after he comes back and tells me that my tests are all clear. Just an item to possibly pursue.

So I was thinking maybe I should just go to another primary care doctor or an infectious disease specialist, but the more I research this the more it seems like this isn't as easy as it sounds. That this is actually a very controversial illness? My initial readings seemed to suggest that Lyme disease was just a medical reality, but now it seems that those who believe in it may be ostracized. I don't really understand and maybe I'm naive. Shouldn't there be some type of research into this?

So I'm a bit tentative going down this road. It looks like there are no easy answers. In one sense I was relieved to find something that seemed to fit and now with the uncertainity around this issue I'm a bit more stressed. So many questions. I want to ask about these LLMDs as they are called. I always worry. My dad, who has diabetes now that he has entered his senior year, went to see an alternative doctor who promised that he could cure his diabetes. It required he go on a diet and start taking these very expensive supplements. My primary concern was maybe the diet itself would help him, why did he have to do these very expensive supplements too. Why don't we hear more about the cure for diabetes? Is there really some conspiracy to keep people sick as some alternative practitioners suggest in order go keep the drug companies and doctors rich? Of course these alternative folks are charging and making big bucks too. I hate to come off as a total skeptic, but these are some of my fears. It just blows my mind that I can't get straight medical treatment for this like I would the flu or even something like cancer. Why is it so controversial? If I take one of the Lyme tests (and will it work for someone who would have been infected 10 years ago) and it turns out positive how much should I trust it. How expensive and successful is the treatment for someone who would have had it as long as me? Does it make sense that in the 10 year period that most of the years from 2000-2006 my medical history full of minor, non serious things?

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Date Joined Aug 2005
Total Posts : 4306
   Posted 5/6/2010 4:11 PM (GMT -7)   
Hi Arctus and welcome to this forum.   There isn't a cut and dry treatment for lyme disease unless one catches the disease in the very beginning, then 6 weeks of antibiotics usually do the trick but most people don't get a bull's eye rash and don't catch it early.
My advice to you is to do what I did, read books and learn.  I highly recommend 2 books:  Healing Lyme by Stephen Buhner and "Beating Lyme Disease" by Dr. David Jernigan.  I followed his "Healing at Home" protocol and I have been totally well for over 4 years now after suffering for about 10 years.   I was one sick lady.
As far as diabetes, that runs in my family as well and I have been on a diet (lost over 20 pounds) so I don't get diabetes.  My Dad had diabetes as well but he was warned to lose weight and follow a certain diet so he wouldn't get diabetes but my Dad didn't listen and ate all the wrong foods.   Now my older brother has diabetes and just like my Dad is eating all the wrong stuff.   I refuse to go down the road.  I eat a sugar-free diet and very low carbs..  I get my carbs from veggies.  
Like you I researched like crazy and I still do research as I have such a curious mind.  I research all different topics..  That's just how I am. 
Learn about detoxing, learn about building up your immune system, etc.  And read books!  The information in these books are priceless..
Hope that helps,

It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA

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Date Joined Mar 2009
Total Posts : 2154
   Posted 5/6/2010 6:42 PM (GMT -7)   
OMG. I could have written your post. I went undiagnosed for 4 years, not without trying every dr., researching and talking to everyone about it. It helped. I had a friend who knew a dr. who she sworn would help me. She did. She listened and kept searching and searching until she hit a dead end. When she mentinoed lyme again, I told her I had been tested four years prior and would obtain a copy of those tests. Lo and behold, 3 significant bands. (have you been tested - do you have the lab work??) So off to an LLMD I go. Didn't like the guy at all, seemed like a quack, was in and out in 10 minutes but not before being asked if I would try accupuncture. He prescribed an uncustomary drug for treatment of lyme. I herxed bad and he told me, deal with it. I never went back. I started with infectious disease dr. who is very nice, but after a year, I have learned he doesn't know chronic lyme. I do feel better to some degree (after a year on antibiotics) but have now hit a wall and neither him or neuro know what to do. SO off to a new LLMD I go. Am I happy NO! I feel like starting over like hell. But I have no choice. I know I have to for my own good or I will continue to get worse. I went to primary in hopes he would help. He literally shrugged his shoulder. Thank god I am in a better position than a year ago as far as emotionally and psychologically so I am ready to forge ahead. Of course, today I am feeling terrible and worry everyday that I am getting worse and pray that I make it to the LLMD apt. without going blind or ending up in ER. People just dont' understanding when I say everyday is a different battle - whether it be a new ache, pain, dr. visit, blurry eye, but I refuse to give up. I just hope and pray I like the next dr. and she can and will help me. I know its a lifelong battle, but I've made it half way up the hill, I'm not falling all the way back down. Best of luck to you.

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/6/2010 10:10 PM (GMT -7)   
You are correct, there are no easy answers. I will not detail my own story here, but will tell you that I was sick, and knew I was chronically ill  w/ SOMETHING for 2 years before realizing and learning I had lyme.  During that time, from time to time, I looked up lupus, living near electrical wires, chronic fatigue syndrome, and esp fibromyalgia.  From time to time, I looked up Lyme disease, never going into any depth, but kept dismissing it because I did not get the bull's eye rash.
Last year, a local newspaper did 3 articles on Lyme disease, and mainly chronic lyme disease.  This is what made me realize I had Lyme. AT first I was excited that I had an answer about what was wrong w/ me.  And then, as I researched, I realized all the controversy.  I tried to make appts w/ all the Lyme Drs named in the newspaper articles. 2 were no longer accepting new patients, and I was put on another's '9 month' waiting list.
The first time I came to this board, I felt totally overwhelmed by everything here. Everyone here was so ill w/ so many things, and they talked about so many different treatments, and detoxing and every kind of co-infection.  I remember posting some questions, while at the same time, stating that I would not be able to come here much.  I did not want to get all involved in all this junk and controversy, etc.  I could not handle one more thing to do!  Plus there was NO WAY I was going to participate in IV treatments, thousands of dollars, and such! (still haven't!)
Still, even tho I was 'too busy', something kept bringing me back here. I learned about testing, what the tests mean and about all different kinds of treatment.  I have learned a lot about the disease.
I still do not believe we have all the answers. And it would be TOO much to go into all the questions.  Even DRs don't agree on everything -- even the Lyme Drs!
Well, now, after more than 1 year, an LLMD who takes my insurance and whose waiting list I have been on for over a year has finally called me and I have an appt the end of June.
As far as controversy, I will tell you this: He is a well respected, Infectious Disease Dr.  The Infectious Diseaase Society does not believe in 'chronic lyme', nor long term treatment.  Yet this ID Dr  does, and is booked to the hilt.
The past few months, I have wondered why his waiting list for new patients wasn't moving along -- so I believed that he must not be helping anybody get well.  WEll, I also just learned that he primarily works in the hospitals, treating AIDS patients. And he treats as many Lyme patients as he can, but as explained to me by his office, these visits are not short and he does not hurry anyone thru Lyme diagnosis and/or treatment.
So now I am excited! A real infectious disease Dr who diagnoses and treats Lyme!  I figure if this guy primarily treats AIDS, then he must understand chronic Lyme disease.
I am told that because Lyme (and co-infections) are very controversial --- The Infectious Disease Society does not accept or believe in chronic, long term infection, nor long term treatment, ---then the reputable Drs diagnosing and treating Lyme have been affected by this disease -- either they have suffered from it or had/have a family member suffering from it. 
It's a long, crappy road and I have given up 10 zillion times.  But, too often, I can't take it anymore.
You have got to accept the fact that this disease, in chronic or late stage form, is not understood or believed in by many Drs.  And there ARE many PCPs who believe in chronic lyme and who have seen the devastation, but who will admit they do not know how to order the proper tests, or interpret the proper tests.
It is quite evident that Lyme 101 is NOT included in medical school!
As for me, at this time, I am placing all my faith in this Dr, at least until I have seen him.
As for a couple of your questions:  IF you have had Lyme for over 10 years, then it is a fact that your tests may not be reliable. And we can tell you why if you do not already know.
 However, please note: As far as WEstern blots, there are false negatives, but NO false positives, unless the test is counting insignificant bands, and not the significant bands, and the interpretation relies on the number of bands, but not the INDICATIVE bands.
A regular Dr can order a Western Blot for you, BUT you must make sure he/she understands that this must be read within 24 hours. As the time passes since the draw, the less accurate it is. You may still end up w/ a test that is stated to be negative. However, the guidelines for this test may be too stringent to interpret a proper interpretation.
A lot of folks here, including me, have done a lot of research on the WB, and if you can get one done, make sure you request copies for yourself.  Because we can at least look at your bands and see if there is something obvious that the lab may not be interpreting.
Does that make sense?
Another test that is said to be very (if not totally ) reliable is a CD-57.  Because most insurance covers only certain labs, you may need to get your Dr to order this, and if your insurance does not cover that laboratory, you may have to pay for it yourself.  This happened to me, but I submitted an 'exception' to my insurance company and they paid for a large portion of it because I wrote to them that my LLMD, who is not covered by my insurance, believed it had to be ordered in order to diagnose.
Important part of THAT bottom line was that I called my insurance company several times begging for an LLMD.  And they didn't have one, so I had to go out of network.
Sorry, I'm realizing I'm rambling a lot --- BUT, I think you have to push certain things yourself. you HAVE to know what you are doing.  My ins company was not able to refer me to a Dr who could 'diagnose and treat Lyme' (I called all the required ID Drs who ALL said 'NO')  So I challenged them regarding the LLMD I went to and who they didn't want to cover.  But because they could not give me a network Dr who COULD, they were kind of forced to cover part of my costs.
Sorry, I'm shot tonite, but please feel free to ask more questions.  Everyone here is so happy and willing to answer as best we can. If you in fact have had Lyme for 10 yrs, then I am very sorry, because it won't be an easy road. AND I believe that if you do have Lyme, you're going to have to fight for yourself -- you CANNOT allow yourself to be diagnosed w/ stuff like MS if that is not what you have.
I highly recommend that you do what I did NOT want to do.  Go start w/ the Newbie section. And the readings and links suggested there come highly recommended as well.
I believe in abx.  But I also know that every single body is different.  And I believe we all got Lyme for many different reasons, too.  You will need to learn whether long term abx or a more 'natural' treatment is best for you. 
Most important, I think you will be able to figure it out, but you must ask for what you need. 
Deepest thoughts and regards to everyone here today,  +Lyme
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Regular Member

Date Joined Sep 2009
Total Posts : 233
   Posted 5/8/2010 7:58 AM (GMT -7)   
DITTO! You have to become your own best advocate because no one else will.

Veteran Member

Date Joined Oct 2007
Total Posts : 748
   Posted 5/10/2010 6:56 PM (GMT -7)   
is CD 57 epensive/ i live in Mi I have never heard of a test being reliable (for lyme that it)
do u know about how much and if it has to be done at a special lab? thanks

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/10/2010 9:07 PM (GMT -7)   

I believe my CD57 costed about $250 (if you ask me to, I will go find it and get the exact figure). I don't have that kind of money myself, but I knew I needed this test and I paid for it.

I realize all insurance companies and policies are different.

BUT, even tho this test was ordered by an LLMD who was NOT covered by my insurance, I submitted this lab test to my insurance and they reimbursed me a good portion -- I don't remember, but I know it was well over 50%.

Oh, NOW I remember the deal: The LLMD was not covered by my insurance, but they (ins company BCBS) were unable to refer me a Dr in my network who could diagnose or treat LYme.

Quest is the only lab my insurance covers. But the LLMD already knew that Quest could not perform this test, so he wrote a script for the CD57 thru Labcorps.

It took a lot of wrangling, but the bottom line was that IF Quest could perform this test, regardless of my script to Labcorps, my insurance would not cover Labcorps.

So I went straight to Quest (other tests had been ordered), and after much 'to do' and searching and phone calls, Quest told me they could not do a CD57, so I went on over to Labcorps, figuring I would have to pay all of it out my pocket.

I already knew that it was not right for my insurance to refuse to pay for lab work ordered by an MD, regardless of who that MD was or who he was covered by.

I had to call them several times, insisting that they should cover this test BECAUSE Quest could not perform it.

No, we shouldn't have to fight like this, but I went straight to our (company's) representative, (NOT CUSTOMER SERVICE!0 telling her that there was no DR in my network who could either diagnose or treat me. And that the Dr I had to go to, had ordered a test that our lab (Quest) could not do.

You HAVE and call and push. It is some peoples' job description to try to not cover certain tests or procedures. STill, if you need certain tests, and/or procedures, and a Dr has ordered these, your insurance company is obliged to try to help you.

I honestly believe this would be a liabilty issue --- ie; if the insurance company refused treatment or diagnostics that could have 'cured' you -- I believe they would be held liable
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Veteran Member

Date Joined Oct 2007
Total Posts : 748
   Posted 5/11/2010 4:12 PM (GMT -7)   
well i wonder if a family dr. would know of this test and could order this test and if a regular lab could do the test and analyze it. thats a lot of ifs i know I have no ins but if i thought it was 99 percent accurate I might sell something Do u know its efficacy rate? I should research it thanku for the info and congrats on the fight i don't miss fighting ins co's it made me that much sicker.

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/11/2010 7:25 PM (GMT -7)   
Rose, no, I don't believe I know the accuracy rate. Partly because everyone's body, who has Lyme, is different. I have read enough to understand this test, but not well enough to educate you on it. You should do a search.
It basically is measuring your body's immune function --- but this is particular to Lyme and no other diseases. For example, people w/ chronic fatigue syndrome measure a CD56.  And AIDS measures one, but I dont remember what that number is.
If Lyme has attacked or weakened you immune system, then this will show up in a cd57 test. I was not able to find one single other disease that is measured w/ a CD57, other than possibly AIDS under certain circumstances. So a low CD57 could also POSSIBLY indicate AIDS. So it should not be that hard to figure out.
I'll put it this way:  A low CD57 indicates you have Lyme, unless  you actually have AIDS.  If your CD57 is NOT low, that does not necessarily mean you do not have Lyme. I do not know the reasons for that, or the number of occurances. 
But for my LLMD, the low CD57 clinched it for him.
I highly recommend that you do a couple of quick searches on it. And also find out what labs your insurance covers.
I personally feel, and from everything I've read, that getting a CD57 is worth the money (please find out how much beforehand). If yours is low, I don't think we should diagnose you, but could tell you that it indicates lyme. If yours is not low, then I don't think we can tell you much about it, because it would NOT rule out Lyme.
The CD57 is frequently used by the LLMD to track the progress of the cure. So it is at least that reliable, at least to me, and to an LLMD.
However, if you need something that says, 'wham, bam, you've got Lyme because we SEE the spirochetes, then, no, this test would not do it.
Rose, do you have health insurance? WEll, if you should get so lucky as to convince your Dr to order a CD57, then, depending on what lab your ins covers and what lab can do a CD57, your insurance should cover at least a portion of it, because your Dr ordered it.
I think if you will look it up, you'll find a lot of material about it that explains better than I.  I recall many sites where I looked at this test.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Regular Member

Date Joined Sep 2009
Total Posts : 233
   Posted 5/11/2010 8:30 PM (GMT -7)   
+Lyme, that makes no sense with the Quest lab...YES they DO the CD57 test. They did mine a few months ago and I'm having another in a month or so.

Regular Member

Date Joined Sep 2008
Total Posts : 283
   Posted 5/12/2010 6:54 AM (GMT -7)   
+lyme Is the IDD you are seeing Dr. B. if it is he is wonderful and nurse Sandy is awesome.
Good Luck

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/13/2010 9:29 PM (GMT -7)   
Harleyrider, I am not currently seeing an LLMD. I had a couple of visits w/ an LLMD outside of town, but he did not take insurance and I could not afford his visits + labwork not covered by ins.

After being on a waiting list for over a year now, I have an appt w/ an LLMD here who is covered by my insurance. I don't know for sure who you are talking about, but I have an appt w/ a Dr. B who is an infectious disease Dr. who mainly treats AIDs patients in the hospital and as many lyme patients as possible.

So you need to give me more clues about the IDD/LLMD to whom you are referring, unless my response confirmed that for you. And yes, he has a great reputation around here -- I am very excited to have this appt!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

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