Tuesday, September 09, 2008

Lyme Disease & CFS

I just came from my doctor's appointment and wanted to share what's going on with me, as well as some resources on Lyme Disease. I thought I knew a lot about Lyme, but I'm learning there's a lot I didn't know. I'm very fortunate to have met someone online who just happens to live nearby and share my doctor and has struggled with Lyme and other tick-borne infections in herself and her son for many years. She's also been a Lyme support group leader for five years. She's been in invaluable source of information and support.

As of today, I have been on antibiotics (doxycycline) for a month to treat the Lyme. I've improved a little bit during that time, though not nearly as much as I had hoped for. I still have knee pain - still severe at times, especially in the evenings - and my CFS symptoms are still worse than they were before Lyme.

One thing I've learned is that Lyme and CFS are even more similar than I previously thought. My new Lyme friend explained to me that Lyme often causes viral re-activation - just like CFS! Because of this, many Lyme patients take anti-virals, like Valtrex or Famvir, in addition to antibiotics. In fact, after my first two weeks on abx, I felt worse than ever. When I learned about Lyme causing viral activation, I filled a prescription I had been holding for Famvir (my Infectious Disease doctor suggested I try it after I finished my 18 months of Valtrex on August 1). Voila! I felt much better within hours of starting the anti-viral.

I thought that joint pain was an early symptom of Lyme disease, but I've recently learned it's actually a symptom of Stage 2 or 3 Lyme disease. Here's the NIH summary of Primary Lyme Disease, Stage 2, and Stage 3. The odd thing is that knee pain was my first symptom. Normally, a person with Lyme first experiences flu-like symptoms. It's easy to see how this could be confused with the flu-like symptoms of CFS, but I actually felt great in the weeks before my knee pain started. I can only guess that my CFS-messed up immune system made me respond differently and obscured those typical early signs of Lyme.

In fact, it can be extremely difficult to differentiate between CFS and Lyme, which is why many people are misdiagnosed. To make matters even more confusing, it is not only possible but fairly common to have BOTH Lyme and CFS since Lyme is a known trigger for CFS. I've learned I'm no expert, but here are a few things that can help to distinguish between Lyme and CFS:
  • CFS often (but not always) occurs in a unique relapsing-remitting pattern, where you feel good on some days but even mild exertion can trigger a crash.
  • CFS often includes a recurring sore throat and/or swollen glands
  • CFS is partly defined by exercise intolerance
  • Lyme will not get better without treatment - it will get progressively worse
  • Lyme responds to antibiotics
  • Although joint pain is one of many symptoms that can be a part of CFS, if joint pain is one of the most prominent symptoms, Lyme should be considered.
Some people have asked me whether I might have had Lyme all along, but for me, it was obvious when I recently got Lyme because the knee pain started very abruptly and was a new symptom. Also, through various therapies, medications, and carefully monitoring my activity level, my symptoms have improved over the past 6 years. Most recently, due to anti-virals and low-dose naltrexone, I was actually doing very well for the first 7 months of this year. If I had had Lyme all along, I would have gotten worse, not better. Besides, I was mis-diagnosed with Lyme when I first got sick 6 years ago and had tried 90 days of antibiotics with absolutely no change in my symptoms at all.

So, to address some of the questions I've been getting lately, here are some resources for those who want to learn more about Lyme, thanks to my friendly Lyme expert:
The plan for me is to continue doxycycline for another month. If I'm not better after another week, my doctor is going to add on another antibiotic, on the assumption that another tick-borne infection may be present. She's also given me lab slips to have additional blood tests done for common Lyme co-infections, though she recognizes that the tests are not always accurate (which is why she'll go ahead and treat anyway). So, hopefully, I'll continue to improve, although I'll admit that I'm very scared that Lyme may cause long-term worsening of my CFS. I just have to wait and see.

Resting and waiting...something I should be used to, right?


Renee said...

I too have Lyme and CFS. I was diagnosed with CFS 22 yrs ago but we know now I have had lyme for 24 yrs. So which came first? Probably won't ever know. I take antibiotics right now (18 mo) and still go through die off at times depending on time of month and dosage. I have been housebound now for 4 yrs. I had 7 children ~ the youngest was 3 when I was diagnosed. I am now a grandmother of 14!
I am enjoying your blog ~ have you checked out LymeBytes? That is very informative too, and I started a blog recently myself...
Renee of Iowa

Des Kahn said...

Hi, I was diagnosed with CFS for 15 years. I joined the patients association, the whole bit. Finally I went to a docotr who had been finding people with cfs actually had Lyme, Dr. Joseph Bellasorte. He told me that at one point he had thirty patients who met the strictest criteria for cfs, and he found out that all thirty actually had Lyme. He diagnosed me as having Lyme (which I had come down with in 1989 and had been treated for, but inadequately). After a couple of years of antibiotics and other medicine, I was discharged as successful by Dr. Peter Fabulian of Kennet Square (Dr. Bellasorte has retired). I am bascially normal. You owe it to your self to see a Lyme-literate docotr. I know of none in Delaware. Des Kahn, Ph.D. (Biological Sciences).

Des Kahn said...

I forgot to add that Lyme disease causes all the symptoms of cfs and fibromyalgia. It is clear to me that in most, if not all cases, the cause of the chronic fatigue syndrome is the Lyme bacteria. I know perconnally several other people who have had the same experience as I described in my early comment, but those others were not aware of an early infection that had been diagnosed as Lyme, as happened in my case. Des Kahn

Sue Jackson said...

Dear Des Kahn -

Thank you for your comments. I am very fortunate that my own family doctor is knowledgable about Lyme and is treating me aggressively.

It is true that many people who have Lyme are initially misdiagnosed with CFS. However, there are plenty of studies that have proven that CFS can also be triggered by other infections as well, like mono (EBV), parvovirus, or Q Fever. In fact, studies consistently show that about 10% of the people who get Lyme or these other infections and are treated successfully, go on to develop CFS.

CFS and Lyme are both very complex illnesses. Thanks for sharing your experiences.


Anonymous said...

Congratulations on the good info about how CFS can be Lyme misdiagnosed and some of the differences. I'm one of those people who began with Lyme++ and then also developed CFS.

But, since Lyme has so many variables using the differences you list isn't sufficient to distinguish if one really does have Lyme. Only quality lab tests and the patient's clinical picture (symptoms, possible exposure etc) evaluated by a Lyme-literate doctor is close to being certain. Unfortunately, nothing seems to be "certain" about Lyme.

I've had Lyme and two other co-infections (Babs and Bart -- sounds like a cartoon doesn't it?)for over 15 years, but wasn't diagnosed for 5 years. My doctor is a former president of ILADS and does Lyme research, so I am in good hands. My difficulties in being healed result from the long time before diagnosis and the complexities of the co-infections.

I know what "aggressive" treatment is, having done abundant research, also reading and "talking" with others in several good online support groups, and ruthlessly questioning my doctor. Plus, I've experienced many oral and IV drugs in my search for a cure. I really want to feel better! And I want you and your readers to get the best help and feel better, too.

Taking doxy isn't aggressive. Doxy is known to cause the Lyme spirochetes to go into the cyst (round-body) phase in which they aren't killed by any antibiotics. So by taking only doxy you are creating a population of armored spirochetes that won't be available to treatment. As you probably know, antibiotics can only kill those "bugs" when they are actively growing.

What is most disturbing is that this could lead you to experience what seems like a "cure" because the spirochetes are hiding and not causing infection after awhile. But then, in the absence of threats, the cysts again transform into the active spirochete phase and you experience a relapse.

For me, I don't want to go thru the antibiotic hell without continuing it until I have some major benefit. Sometimes I was more sick from the drugs, especially the GI problems with flagyl.

Please check into this for yourself and talk to you doctor about what drugs you will be given next, and how soon. To jump-start online research into this subject, I am pasting the URL to a Townsend Letter of 2010 that discusses research on doxy and two anti-microbial herbs and how they affect the spirochetes.

One of the authors of this study is Eva Sapi, who has done much research with Lyme and also is responsible for learning about the biofilms that spirochetes form. Another way these bugs hide out from treatment.


Scroll down past the graphs to the second paragraph below them to find the specific statement about doxy not being effective against this phase of the spirochetes.

There is alot of other information that supports this but I don't have the links handy.

Best wishes for successful treatment! Love this blog except for those darned dots in the background.

Sue Jackson said...

Thanks for all the great information!

As you can see, this post was actually written over 4 years ago, so my own Lyme is long gone now, I am happy to report!

However, since then, my son has been diagnosed with Lyme, Bartonella, and Babesia and like you, we think he has had these infections for 5 years before his diagnosis. He has had significant problems tolerating any abx therapy so is going extremely slow. He is on doxy but could only tolerate 1 pill (100 mg) every 2-3 days until recently - he now takes 100 mg once a day. I do know about the other forms of Lyme that develop. For me, Flagyl and several different supplements did the trick finally.

I really appreciate the extra information and will read through it to see if it can help my son.


Sue Jackson said...

P.S. Sorry you don't like my dots - I love them! So cheery!

Anonymous said...

Very encouraging to hear about people beating Lyme and its co-infections. I'm sorry to hear about your son, hope he gets better.

Sarah S said...

I am happy to find this blog and people sharing their experiences for Lyme. I was diagnosed with Lyme two years ago, fortunately, I did not develop CFS. However, I always have problem with my knees. I don't know whether the Lyme can cause irreversible damage to the knees?

I used a yoga relaxation technique daily,and I do not feel tired during the day. But the knees are bothering me. Can anybody give me good recommendations for what to do next? Thanks in advance

Sarah S said...


I was diagnosed with Lyme two years ago. After treatment with antibiotic for a month, the doctor said I should be fine. However, I still feel knee pain from time to time. The doctor suggests that it is just going to be like that for the rest of my life, and suggest taking pain killers for that. Is she right?

Sue Jackson said...

Hi, Sarah -

Your doctor is very wrong!!!

It often takes more than 30 days of antibiotics to completely get rid of Lyme (it took me 3 1/2 years but that may be partly due the immune problems caused by my CFS). And the only real test of when it is gone is when your symptoms clear up completely and don't return when you stop the abx. If you still have knee pain, you probably still have Lyme. I can't believe a doctor would tell you you just have to live with that for the rest of your life! Well, actually, I can believe it...

Do you have any other lingering symptoms? Feeling feverish, nausea, fatigue, other flu-like symptoms? they may come and go because the Lyme has a 28-day life cycle and only emerges into the bloodstream occasionally (one of many reasons why blood tests for Lyme are so unreliable).

The rule of thumb is to treat with antibiotics until all symptoms are gone for at least 4-6 weeks, then see what happens when you stop the abx.

Sounds to me like you need to go back on doxycycline. In fact, a trial of doxy would tell you for sure if you still have lingering Lyme (if you don't have it, there would be no change at all in symptoms; if you do have it, you might get better or worse at first but the doxy would definitely affect you).

Good luck! Let me know if you need help finding a knowledgeable Lyme doctor.