I've been on disability for over 3 years now, diagnosed with CFS and Dysautonomia (NMH). For 8 months now my CFS physician has been working under the theory that Lyme often presents itself as CFS and has had me on extensive antibiotic therapy. During this time I've had a couple of Western Blot tests. In the initial one, one band came back inconclusive and the rest negative. In the second test came back completely negative.
I pleaded with him to cease the treatment as I've seen no improvement whatsoever and there doesn't appear to be any diagnostic evidence that Lyme is in play here at all (besides, taking a couple of handfuls of expensive meds each day is not a lot of fun!). His response was that `some in the Lyme community would consider those tests positive'. I agreed to continue the treatment but to see a Lyme specialist to review my situation.
After researching this all I'm more confused then ever!
I realize there is no definitive test for Lyme, but is there even an objective reasonably agreed upon approach for assessing the Western Blot test and how could anyone interpret a fully negative test as positive?
I have no idea where to turn at this point. I don't want to go to a conservative physician that is going to rubber stamp the Western Blot test. Nor do I want to go to someone at the other end of the spectrum and over diagnoses Lyme based on unsubstantiated theories.
Can anyone recommend an objective approach to dealing with this dilemma? If I have Lyme instead of CFS I want to treat it, but I don't want to go through years of antibiotics with the remote possibility that I'm treating the right illness.
Posted by dtiffen02 (Member # 8993) on :
Unfortunately that is a dilemma many are faced with. The best thing I can recommend is to educate yourself as much as possible and work with your doctor from there.
My problems are very similar to yours, and I am also suspicious of the Lyme diagnosis as it pertains to me. Borrelia seems to be endemic in this country, as evidenced by the fact that nearly everyone who is tested through certain labs (namely Igenex and Bowen) will demonstrate, at the very least, evidence of past exposure to borrelia. On the Igenex western blot most will be, at the very least, reactive on band 41, and on the Bowen test just about everyone in the US is positive at various dilutions. After researching the topic thoroughly, I believe there is sufficient evidence to deem these labs reliable (even Bowen). Since this is the case, one can then draw the conclusion that nearly everyone in the States has had exposure to that form of Borellia. The problem is, this makes it difficult to distinguish between what's the driving force in making you sick and what's merely smoke and mirrors (like a positive titre for EBV or HHV-6).
Also, as I'm sure others here will mention, there are multiple persistent coinfections associated with chronic Lyme disease. These include babesia, erlichia, RMSF, bartonella, and a few others that are less well known. (West nile virus if in a known area) Yet something else to consider.
And then there's everything else. Contrary to what some on here would have you believe, everything is not caused by "Lyme". I know I am going to take flack for saying so, but it's the truth.
Anyway, I know what it's like to be in your situation, and wish you luck in your pursuit to regain your health.
Posted by hopeandme (Member # 8803) on :
I so know what you are going through. 7-10 days after being exposed to tics I started to twitch, have muscle pains, back pain, spinal cord pain, neck pain, and knee pain.
I went to the doctor who was covering for my regular doctor and she told me I had the flu and to go home. I told her that I thought I had Lyme disease so she did an Elisa test on me. This test should not be done for 6-8 weeks after experiencing symptoms. She really should have treated me immediately but she told me she would absolutely not but would if the test showed it was positive. She said she doubted it though.
A week later I was still sick. I knew this wasn't the flu and that something was terribly wrong. I saw my regular doctor and she sent me to a neurologist (she was thinking MS). I went to the neurologist but he couldn't find anything wrong and he sent me to a rheumetologist who diagnosed me with what he called a strange case of fibromyalgia.
Then I went to Dr. Teitelbaum ( a specialist in CFS and Fibro) he told me that I didn't have fibro. He put me on so much medication that I was afraid I was going to O.D. I took it anyway because I wanted to get better. Nothing helped. He said I was only ne of a few that he was unable to help.
Then I decided it was time to find a LLMD. He was 6 hours away. My tests from Igenex came back negative but with bands 39 & 41 equivelent. He thought that was very suspicious b/c they are two of the bands that represent Lyme. He treated me and I didn't think it helped so I left. Know that I look back some of the symptoms have gone since I had seen him.
Then I went to the Fibro & Fatigue Clinic. No help there other than finding a supplement that helps with energy.
This past November I went to another LLMD. The most caring LLMD or doctor I had ever met. She put me on some antibiotics and one symptom that I had which was not being able to eat went away. I started eating like a pig. I went on IV Rocephin among other things. Ihad more tests done by Igenex and the only thing that came back IGG positive were for two co-infections that I didn't have any symptoms for.
Next I heard of a doctor who seemed to be really helping people. All I can say is since I found him and his physicians assistant I have felt horrible. Ihave been told that I am having a herxheimer reaction. It is to the point where I can't function to work. They work on a modified program which is called the Marshall's Protocol modified program. They tested me through quest for Babesia and once again I tested negative.
I spoke to Igenex and they highly recommended taking the urine challenge or the urine panel during the time of my period. They said this was the most sensitive test for women. This test should be taken on days 2, 3, & 4. I am going to do this. If it comes back negative I don't know what I will do?
I also was diagnosed by one doctor with chronic fatigue. There are really no specific symptoms that are different from CFS and Lyme. Perhaps you get treated for both? I don't know.
I do recommend trying the test that Igenex recommended.
Please know that you are not alone and many of us are struggling with the question Lyme versus CFS. My current doctor said that he believes 95% of CFS and Fibro. patients have Lyme.
Good Luck and let me know how it goes. If you have any questions please feel free to send me a private message.
Posted by mycoplasma1 (Member # 6377) on :
Like me, you could spend years doing tests or debating whether it is Lyme, Mycoplasma, viruses whatever.....
Just treat yourself. The tests ARE COMPLETELY UNRELIABLE. You have to understand that we are all dealing with a virtual "soup[" of pathogens, whether it be Lyme, Myco, strep etc...This is why we need to do low dose-pulsed antibiotics (per Dr. Brown protocol -Road back Foundation or Marshall Protocol). Many CFS patients have gone into remission on low dosed Minocin (200mg MWF) alone. You will herx, but in 6mos-3yrs you will have no more problems. Don't bother with anything else except for a really healthy diet/detox regimen. This antibiotic and low dose Zithromax pulsed in is VERY SAFE and many RA people have used it with no problems for 30+ yrs. Read "The New Arthritis Breakthrough" by Henry Scammel and unlearn everything else about "CFIDS". It's infectious, get on with treating it.
I am only telling you this to save you $$$, time and years of more pain.
Posted by mycoplasma1 (Member # 6377) on :
Also - If you decide to do Marshall (the jury is still somewhat out) he no longer says light avoidance is an issue to get well.
Posted by Michelle M (Member # 7200) on :
Hope & Me,
(Sorry to thread-hijack here----!!!)
You said: "Ihad more tests done by Igenex and the only thing that came back IGG positive were for two co-infections that I didn't have any symptoms for."
What two coinfections did you have?
What treatment did you take for them?
Please keep in mind: You needed have the right symptoms to match the co-infections. I had a nasty case of babesia WA1 but have NEVER had a sweat or fever. Go figure. Lots of other symptoms, but definitely not "textbook."
You said, "My CFS physician...." Wish you had an LLMD review your case and work with you. Eight months IS a long time. What meds have you been on? Did you test for co-infections? Sometimes people have babesia (make that FREQUENTLY!) and need to treat it even if they test negative. Sometimes that's the real corner-turner. Can you tell us more? So sorry for your limbo-land..
Posted by minimonkey (Member # 8693) on :
Dear Way Confused --
I'm sorry you are going through this!
You have already gotten several answers, and I think you will continue to get even more as this thread gets longer...
My personal, non-medical-doctor suspcion is that some cases of CFIDS are lyme, and some are not. I think most (if not all) fibro diagnoses are likely lyme.
A lot of the early research of CFS pointed to a viral component (some of that was later re-thought, as it was thought to be EBV for a long time ---) but the fact remains that latent viruses were reactivated by SOMETHING in Cheney's CFS patients. I have no doubt whatsoever that there is an infectious agent/agents underlying CFS -- but is it always lyme? I personally doubt it.
Which labs did your testing? My personal feeling is that IgeneX is your best bet for tick-borne diseases -- the testing is very specific. The fact that they have a high-positive rate (not nearly 100% btw) is due, at least in part, to a self-selected sample. Most of the folks whose blood ends up at IgeneX have already been displaying numerous symptoms consistent with lyme/co-infections, or they would never have had their blood tested there in the first place -- so of course they are going to have a higher rate of positives than the average run-of-the-mill lab. Plus, their testing does pick up things that other labs don't.
The 41 band is not terribly specific to Borrelia, actually -- it is a flagella (tail) protein that is specific to spirochetes, but that is about as diagnostic as it gets on its own. Even normal mouth bacteria can cause a positive 41 on a sensitive test. In combination with other bands it can be much more telling, though.
Thankfully, I never found myself in your position -- I responded quickly and strongly to the abx, and that has erased any doubt I may have had about my dx.
If, however, I had been on months of treatment without effect, I'd be questioning the diagnosis, too.
What abx are you taking?? Several other infections mimic lyme (or vice-versa) including mycoplasmas and chlamydia pneumoniae -- these are both bacterial (actually mycoplasma is weird -- it doesn't have a cell wall) and respond to abx, but they need to be the right abx for the bug in question.
Also, some chronic lyme folks respond more slowly to abx, some don't respond to orals and need to go IV -- there are a lot of variables.
If you'd be willing to post a bit more about how long you've been ill, what you are taking, what tests you've had, your symptoms, etc. you will get a lot more information.
As if you can't tell, a lot of us (like myself) are more than happy to chatter on and on about this stuff!
Some CFIDS folks have responded really well in trials of antivirals, too -- so that may be another route to consider.
There are some very educated folks on this board with regards to non-pharmaceutical approaches to treating this stuff (all chronic illness) and they have a wealth of info to share as well.