posted
Chronic fatigue syndrome patients experience significant post exertional malaise (PEM). For example, I am bedridden. A trip out to the doctor's office will severely crash me for many days. That is common with CFS. I am wondering if Lyme Disease patients experience PEM as well?
I am diagnosed with both both CFS and Lyme Disease/Babesia Duncani. I am trying to figure out which one is most likely causing this severe crash to happen to me.
I really appreciate any help, thank you. I have multiple infections and trying to figure out what to treat first (EBV, Lyme Disease, Babesia??). I think whichever one is most likely causing this PEM thing.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is extremely common for a lyme patient to have post exertional malaise. It is just as you describe it.
I don't know which disease is most responsible in your case. But, babesia can definitely cause it as can viruses.
Here are some quotes from the Burrascano Lyme Treatment Guidelines discussing fatigue, its causes, and various treatments you can begin right away.
Regarding babesia: "Fatigue is prominent, does not clear with rest, and is made worse with exercise." (page 26)
"DNA VIRUSES (HHV-6, EBV, CMV) � Persistent fatigue, made worse with exercise." (page 27)
"Studies on patients with chronic illnesses such as Lyme and Chronic Fatigue have demonstrated that some of the late symptoms are related to cellular damage and deficiencies in certain essential nutrients. Double blinded, placebo controlled studies, and in one case direct assay of biopsy specimens have proven the value of some of the supplements listed." (page 27)
"3. CO-Q10- required, but do not use while taking the prescription drug atovaquone (Mepron, Malarone). Deficiencies have been related to poor function of the heart, limitations of stamina, gum disease, and poor resistance to infections. Heart biopsy studies in Lyme patients indicated that they should take between 300 and 400mg daily. I recommend the Co Q-10 from Researched Nutritionals. One caplet contains 400 mg, so the dose is one a day with food." (page 28)
"7. ESSENTIAL FATTY ACIDS: (required) Studies show that when EFAs are taken regularly, statistically significant improvements in fatigue, aches weakness, vertigo, dizziness, memory, concentration and depression are likely." (page 28)
"8. NT-FACTOR This product addresses the mitochondrial damage thought to underlie the metabolic dysfunction associated with chronic diseases which, in patients with tick-borne illnesses, is manifest by fatigue and neurologic dysfunction. It is the single most reliable agent I have found that can give noticeably increased energy levels." (page 29)
"CORDYMAX Cordyceps is a well-known herb from Tibet that has been shown in clinical studies to improve stamina, fatigue, and enhance lung and antioxidant function." (page 29)
Generally, a lyme doctor will be willing to treat a patient for both lyme and babesia simultaneously. Once you get rid of them, the viruses are usually no problem. I guess the immune system recovers and handles them without any medical assistance. (Lyme and babesia compromise/weaken the immune system--like AIDS, my doctor said. That is why you must get rid of them both to get well.)
So, let the lyme doctor come up with the treatment. If you have a good doc, not only will this terrible symptom go away, but so will many, many other symptoms also. And, hopefully, lyme and babesia were the cause of your chronic fatigue all along, so that will be gone also.
I wish you the very best. The doc is the key to getting rid of these diseases. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. I suggest you ask for a doctor who follows the Burrascano lyme treatment guidelines. That is how I and all my friends got rid of this disease.
It is now 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Jam, you're going to find different opinions depending on who you ask. Keep in mind that "CFS" is a set of symptoms with no known cause. Most people who have CFS are suffering from infection with some or most of the pathogens listed on http://chronicfatigue.stanford.edu/.
I would get a viral panel done (MDL does a very good comprehensive panel for $600 or so) but then treat for TBIs before treating viruses. Lyme and Babesia are much easier to treat than viruses.
If TBI treatment fails, then it may be time to start looking at HHV-6, CMV, EBV, and the like. (And maybe there will be some more research on XMRV by then.)
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I remember the days when just getting the kids to school and showering would put me back into bed until it was pick up time. Then, nap until dinner time.
Babesia treatment has given me my life back.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
TF thank you so much for posting those great excerpts for me!
I started treating lyme, only 5 wks and then had to stop for other reasons. Now more than a year later its like starting over for me sorting out what to do. My lyme brain hasn't retained what I learned the first time round.
Trying to refresh myself some before appt with LLMD...thanks everyone!!
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
As 5vforest said, CFS is just a name for a group of symptoms. Now that you know what is really causing those symptoms (Chronic Lyme and Co.) you can forget the CFS dx as you now know the underlying cause of the CFS. CFS is the dx they give when they don't know the underlying cause. Some people accept this dx indefinately which is unfortunate since it isn't really a dx at all.
Posts: 2541 | From Northeast | Registered: Jan 2008
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