Yes, I get depressed and frustrated when these fatigue episodes happen. The last thing I think about is exercise. Yes, I eat to "feel better". I have never tested positive for anything (seronegative, I believe), it was a clinical diagnosis.

What should I expect? Should I be feeling more energetic? If I feel like crap on the bottom of a slug's foot, should I go out and exercise anyways? Working all day and then exercising, gee, that feels like alot.

I know I need to exercise more regularly.

I appreciate you being here for me to vent, if for no other reason. I am just feeling a bit overwhelmed.

Have you seen Dr. Paul Cheney's information about the use of stimulants in CFS patients? I am guessing that it would apply to Lymies as well. He believes that these drugs (which include Provigil, also SSRI's) cause he neurons to burn out and thus while they might help you in the short term, they cause more damage in the long run.

CFS patients are also told NOT to do aerobic exercise and only aerobic exercise to tolerance. Is this the same for Lymies?

Have you ever been evaluated for CFS? Especially since your blood work was always negative, it might be worth seeking out a doctor who treats CFS, if nothing else to rule it out.

Are you providing your body with sufficient nutritional support? Have you had nutritional testing done to see if you have any serious deficiencies?

You might want to check out another board also, called Accidental Patient (www.accidentalpatient.com) Most of the members have CFS and fibromyalgia and there is much discussion regarding nutritional and other alternative support and treatments. There are some really bright and well-researched folks over there who could offer you a lot of information and support.

Remember our bodies have been through a lot. They are tired. Try to take care of yourself and not push yourself too much. I believe stress has a direct correlation to this and should be avoided as much as possible.

I recommend you lay low on excercise and only do that which relieves stress. You may think of taking on yoga, or swimming in the evenings. Personally, I enjoy taking walks. Most of the time after the sun has set, the heat during the day only makes me feel worse.

If a patient goes off of abx, my LLMD will say "at the FIRST sign of relapese, let me know and we'll put you back on abx". You sound like you are having a blatant relapse. You describe a brain fog and tremendous fatigue . . . this is classic lyme! Especially the brain fog. However, keep in mind that at this point, the abx you are taking may be making you herx and sleep. This is a good indication that you NNED abx.

Stimulants are not a great idea IMHO. They will force your body to do something that is not natural energy causing the underlying problem to get worse.

Lyme can go in remission and become dormant for many years and then suddenly flare. It sounds like the abx really helped you but you've got a flare. Were you checked for co-infections? Epstein Barr can flare too, many things like Babesia and Ehlichia can go undetected at first but with each test you increast the possibility of finding them.

If I read correctly, you never test + for lyme. I strongly suggest you get a Bowen Test and settle this once and for all. The Bowen has gained respect in the lyme community and with more and more doctors. It is on it's way to FDA approval which will make it the ONLY FDA approved test for lyme.

When someone backslides, lyme will pick other areas to "bug". (no pun intended)
:-). After I went off abx my lyme went in the ears and gave me tinitus . . . my hair thinned alot. . . is yours thinning at all? You don't need new lyme problems.

Your doctor is not talking like a LLMD. This concerns me greatly. I would RUN, not walk, to the closet LLMD.

In my humble and blatant opinion, CFS is a crapshot diagnosis that HAS an underlying cause, such as lyme.

Ya dont have CFS.

It does sound like you need more antibiotics, but perhaps the right ones. I dont know what you took, or your history or anything.. you know what I mean? I mean perhaps you have a coinfection that was never treated and is really holding you back, etc. ( Even IF you tested negative you can still have them and be treated likewise)

Im sorry to see you back here though darnit!

I hope you get on the right track.

I'm sorry you're not feeling 100%.

I'll just reply to the part about your brain and glue. That's exactly how I feel when I ingest MSG, aspartame, and other excitotoxins.

Please, stay away from aspartame, as in diet sodas. The stuff is neurotoxic.

Here is a link to explain:
http://www.haciendapub.com/article27.html

Best wishes,

I tried to go without my provigil this morning. Man, I was a cognitive fogged yawning mess.... until I took the 200mg along with, yes, the dreaded diet cola. Only then, was I able to be a moderately productive employee.

Since I have returned to work, we have become dependent on my income. At least my job pays for most of my medical costs. I have contemplated changing my schedule...get to work earlier or later...It is hard figuring out things.

Long time no see! Nice to hear from you! Sorry you are having struggles!

Sorry I don't have any magical answers...... we are still here after 4 years, too..... Yet, my daughter is doing a tiny bit better! Still a long way to go though......

However, have you read about how candida and metals can help create a relapse? We all know that the bug can lie dormant, but what in our body and our immune system allow it to make a comeback and effectively take over the way it used to?

In some cases, it may be metals and candida. Lyme patients who have used long term ABX should treat for candida, and test for metals.

More on my experience with this here http://www.lymetreatment.com/ICHT3.html

I know my LLMD suggested I see another LLMD because sometimes one will miss what the other can pick up.

I haven't done that yet. I don't have the finances or the strength.

karen

I am back to my usual level of functioning. 200 mg of provigil and a cup of coffee to start the day and 2-3 diet/regular cokes during the day to maintain.