posted
I am really hoping that some one can help me brainstorm why this may be happening or what might be done about it. This is long, so if you're able to read then thanks in advance...
My situation is that I have been treating Lyme/co for almost 3 years now with pulsed combinations of oral antibiotics. My primary issue in the opinion of my LLMD is Bart.
I was probably sick with a smoldering infection since around '02, but I wasn't "bad" (interfering with my life) until around '07, when I began to experience neurological involvement.
I am fortunate to say that through my years of treatment I have made great strides in recovery: I work full time, exercise often, and my symptom load/severity is greatly diminished.
However, I can't seem to get over terrible crushing fatigue that "comes out of nowhere" on a daily basis. Of course, such fatigue also causes cognitive disruption and physical discomfort.
I am "stumped" because I can go from feeling very good in the morning (able to do 1 hour of cardio, feel happy, work with a clear head) and then it is like a ton of bricks hit and suddenly I'm exhausted, brain-dead, and in pain.
Nothing that I have tried can reverse the fatigue after it's daily onset. (For example, coffee doesn't help at all.) If I am lucky, it comes later (2 PM) but can hit as early as 9:30 AM. It has on several times caused me to need to leave my office because I'm literally too exhausted to sit up and in too much discomfort to stay.
I do not normally have trouble sleeping and often wake up feeling rested.
I have had my adrenals tested and my cortisol just barely dips into low range early-mid day, and my LLMD has me on a very small (5 mg) dose of cortef. I tried higher amounts (up to 10 mg/day) but it didn't help more than 5 mg.
My thyroid has been tested a million times, and while it tends towards hypo my labs don't correlate with the extreme symptoms of fatigue I experience. I do have a terrible time with weight, and despite cardio 5x a week I'm always fighting to maintain and unable to lose.
My bloodwork in general is good; though I'm heavy (ok obese) my glucose and cholesterol are in very good range, my vitamin levels are all good. I do consistently have high c-reactive protein and SED rate.
I take nystatin and diflucan, though I've never had much of a yeast issue despite nearly 3 years of abx. I have been gluten-free for several months now.
The problem with fatigue has persisted through several changes in my abx protocol. I'm currently on a break from all abx, and there has been no improvement in my fatigue.
The bottom line is that I don't understand how I can have shown such great overall improvement yet still deal with disabling fatigue on a daily basis. My routine (every 3 months) bloodwork doesn't show an obvious cause, and I'm out of ideas for what to suspect or what to try...
Thanks, and again sorry for the lengthy post.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I hope that someone can help you with this. You sounds just like my daughter. It doesn't matter what abx we try, she still has major fatigue.
All of her other symptoms are under control.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Some people think the fatigue in lyme patients is caused by a viral coinfection, possibly one involved in CFS. This research is still in progress and there is no definite treatment for it.
Also, I am wondering what thyroid tests you have had. Please post what tests and what results. Thyroid is not being handled well by most doctors.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
My doctor says that fatigue is often the last symptoms to go away.
racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
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posted
Have you been treated for babesia?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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Member # 25251
posted
Undiagnosed or undertreated infection, or blood sugar dysregulation.
posted
My LLMD also told me that this crushing fatigue is the last symptom to go. Most of my other symptoms are better, but I am still profoundly fatigued.
I did get extensive thyroid testing done and my dosage was put up to 180 Armour.
I think we are not supposed to do any aerobic exercise, as if I could. Going up the stairs is all I can manage before I am out of breath.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Could be from untreated parasites/worms. They can play a major role in Lyme disease. Google parasite symptoms and also do a search on here for parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
The couple possibilities that jumped in my mind were CCSVI or babesia or something babesia-like such as protozoa FL1953.
Posts: 1927 | From se usa | Registered: Mar 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Just some ideas... Your fatigue kicks in and off, if I understood well. It looks to be related to a cycle of something.
It couuld be killing - die off effect ( build up of toxins). I had that after killers, if I didn't take proper cleansers.
Another hint: it could have to do with EATING certain foods that cause you allergy or sensitivity. For me the relation got clear AFTER I did an allergy free diet (crushing fatigue got MUCH better very fast).
It could be the nasty babesia as suggested above?
it could be your immune system kicking in to fight infections (I get that after I got right homeopathic treatment for some infections). My body starts killing (not the remedy) and I get tired.
If you feel tired after exercises, it is NOT good to exercise, in TCM thinking (Trad. Chin. medicine). It means you overdid. After exercise, you should feel energized, more than tired, according to my Korean teacher.
In TCM thinking and in dr. K's thinking, the body and pathogens have own rhythms. Your body's organs and meridians work like a clock (producing hormones, etc). If you get crushing fatigue in similar hours, you could look into it and try to find out to which meridian or organ it corresponds.
CoQ10 correction could help?
Eleutherococus could help ? It helps many with lyme (Buhner suggestion).
I also use infrared pulsed for getting energy.
I agree that fatigue takes time to go, but it is different. I reached remission quite a few times. At least for me, the on-off fatigue in a day, if cyclic, has a meaning and a clear cause.
The general fatigue (lack of stamina), lack of motivation, is though different. It heals slowly after one reaches full remission, that is right.
But the on-off fatigue that is cyclic, nope, I don't agree that this is a sign of normality. Just my opinion. I would pursue to find the cause.
have you looked into mold? Could you relate to the timing of remedies you are taking? Or is it related to certain foods?
Posts: 6199 | From Brussels | Registered: Oct 2007
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blinkie
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Member # 14470
posted
I am in the same boat. Doing very well but get crushing fatigue. I do not sleep well though. I know I am still dealong with parasites becuase I react (improve) even more when I take them.
I recently started supplementing a small dose of progesterone in the evening. I sleep better and as long as I take my morning and evening dose of T3, I can get through the day with no fatigue at all. That being said, this means something is still affecting my endocrine system.
Try some OTC progesterone. If that helps you, you know you have a hormone problem.
Posts: 1104 | From N.California | Registered: Jan 2008
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karenl
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posted
Are your viruses tested? HHV6? I also would recommend treating parasites.
Posts: 1834 | From US | Registered: Oct 2008
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My wife and I also experienced this, it was devastating as we are young and pretty active. We have a toddler, work full time, and we both enjoy physical fitness.
One thing we both observed was an unusually low body temp that seems to go along with the fatigue. My temp was on average 96.4 and would dip down to 95, but never go above 97.5.
The thing that has helped us the most was painting Lugol's solution on our wrists. I'm not saying it is your only option or that it will work for you as well as it has for us, but it is an easy and inexpensive option to try and correct this.
I can't comment on coinfections because we didn't have any, I know they can cause serious fatigue along with other viruses and such.
Another thing to consider is candida, especially being on long term abx. I read that this can cause fatigue, though I'm not exactly sure how.
I would absolutely recommend trying the Lugol's if you haven't yet. Just be aware that you may be severely defficient and it may take a while for it to help you.
Posts: 80 | From US | Registered: Aug 2011
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CherylSue
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Member # 13077
posted
Adrenal fatigue. Try Isocort, but don't take too much in a day. It's available from endfatiguedotcom online.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
You might consider looking at your diet and changing your exercise habit.
If you are not avoiding sugar, refined carbs (white flour, white rice, etc.) then consider doing so. Also consider going gluten-free for a couple of months trial. Wheat proteins are notorious allergens. (Just don't make the mistake of being gluten processed junk, like gluten-free breads, cookies, etc. It's still junk.)
Check out online resources like the Weston Price organization (www.westonapricefoundation.org) or Mark's Daily Apple or the Perfect Health Diet. Basically, eat grassfed meat and pastured fowl and eggs, lots of (organic) vegetables, good butter from pastured cows, olive oil, avocadoes, nuts and seeds, berries, and vegetables. Did I say vegetables? (you can also google 'real food' and see what comes up)
As to exercise, cut back on the cardio. Basically take nice strolls instead of working to raise your heart rate too high. Instead, do careful, slow strength training and stretching.
Also, consider relaxation exercises, yoga or tai chi, or meditation.
You have my sympathies---I'm newly diagnosed, haven't started treatment yet, and fatigue is crushing me.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
You might consider checking out the blood type diet by Dr. D'Adamo. Not everyone does well on the same diet. There are a few people I know that are recovering from Lyme that are doing much better after following a food list for their s ecific blood type.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I agree with Bleedgreen. Rubbed iodine also helped me during lyme. It-s an unexpensive and good treatment, as the body absorbs what it needs. Most lyme sufferers are very deficient in iodine.
Another thing that helped me and many people is Eleutherococus tincture. Nothing to do with ginseng that never helped me in any way. Buhner says it is very good for lyme.
,,,,,, I also agree with Susie. Diet plays extremely important role. For some reason, lyme sufferers profit from an anti-candida diet.
Many will feel better avoiding wheat as most people are allergic to it without knowing and certainly sugar and alcohol.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
So many symptoms are easing for me with the abx, but the crushing fatigue remains.
Two things are helping with it:
IMT (Integrative Manual Therapy)...check out the Institute of IMT on the internet to find a therapist near you. I am amazed at the results and I have no idea how it works! But my LLMD knows about it and reads the reports they send us.
Low dose Nuvigil in the am. I start with half or even less of a pill on the first day or two and then gradually ramp up. When I am doing major herxing I stop it. It helps me think more clearly and helps beat down the listlessness I feel.
My LLMD said that the fatigue is probably from the Babesia.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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lymeinhell
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Member # 4622
posted
Yeast and long term abx have no doubt interfered with your ATP production (our energy building blocks in our cells). When I first stopped abx, I was experiencing the same thing, typically around 1-2pm. Your cells literally run out of energy.
So, I added 2 things to my daily intake: 300mg of a Quality CoQ10 (you get what you pay for when it comes to CoQ10) and NADH. I only needed to do the NADH for maybe 3 mos, but let me tell you, it worked.
I used 300 CoQ10 from Allergy Research - it's a gel cap loaded with vitamin E tocotrienols and tocepherols, and I believe the 10mg NADH from http://www.nadh.com/
You also need to be sure you've addressed yeast as yeast can mess up your blood sugar (I know I became reactive hypoglycemic for a while and my sugar would drop to the 40's). Might even be worth buying a cheap blood sugar test kit and monitor your sugar for a few days - with rebates, the starter kits are almost free.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I agree with Babesia but don't discount mold. Any mold where you work? Do you feel the same when not working?
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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