LymeNet Flash: End of treatment? Weeks of being ok and then sweats and crashing

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Posted by Judy G. (Member # 18498) on :

I went off antibiotics and felt GREAT for three weeks -- this is 11 months into treatment -- doxy, mino, azith, flagyl, Tindamax ...

All my symptoms gone -- saw my LLMD this week. She is cautious, but hopeful as am I.

Decided to add two months of doxy to see if that could maybe finish it.

The problem is I still seem to get a flare-up every four weeks -- must be the Lyme? still.

The times between are better than ever -- I feel normal, but it worries me that I still seem to be flaring. Crash in the afternoon, heaviness, sweats and fever, swelling ankles and feet.

This continues for about five days, then goes away whether I am taking abx or not.

Too soon to be a herx, I think, only started doxy two days ago... and this is the time of the month I flare --

Any insights out there? [confused]

[ 10-03-2009, 12:53 AM: Message edited by: Judy G. ]

Posted by Hoosiers51 (Member # 15759) on :

I'm not too sure, sorry! Hope you figure it out.

Posted by Judy G. (Member # 18498) on :

I guess my main question is when is treatment over? I don't know if I need to wait until I am free of all symptoms.

I know that my LLMD is cautious -- and recommended a new book that I sent for "Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies"

I guess I just want this over... like everybody else. Thanks for the encouragement.

Posted by JamesNYC (Member # 15793) on :

My LLMD says he wants 3 months without symptoms. I haven't got there yet.

Posted by sutherngrl (Member # 16270) on :

Mine wants me 6 months symptom free before stopping antibiotics! Says you cannot leave even one spirochete behind or you will relapse.

Posted by Judy G. (Member # 18498) on :

Thanks!

That gives me some good bench marks. Guess I have to keep swallowing this stuff, taking the supplements, dealing with loose you know what, staying away from sweets and alcohol.... and hanging in there.

Patience has never been one of my virtues.

[Roll Eyes]

Posted by Lymetoo (Member # 743) on :

Have you been treated for babesia? The sweats might indicate a problem there. Most of us have at least one coinfection.

Many drs choose to finish off the lyme with high doses of flagyl. Believe me, if you can pass THAT test, you must be clear of lyme!

Definitely stay on abx until SEVERAL months free of symptoms. You are not there yet.

Posted by aMomWithHope (Member # 19255) on :

My daughter's LLMD says to treat until symptom free for at least 2 months, which unfortunately makes the time for actual treatment different for everyone.

Want to share your Lyme story? How long did you have it before treatment began, any co-infections, etc.? I know that when I hear success stories, I also love to hear the details too.

Sounds like you are close to the finish line though, so that is great news!

Congratulations on feeling so much better.

I wish you continued success in your recovery!

Posted by Myco (Member # 9536) on :

Sounds like you need to treat Babesia.

Posted by Judy G. (Member # 18498) on :

My LLMD suspects Babesia too, we did the Igenex testing for all coinfections, only thing that showed up was a slight Erlichia indicator that could mean it's being treated.

She said she would treat for Babs too, even though testing wasn't positive, but I seem to be winding down. So we agreed on two months of Doxy (which would target the Erlichia too)

I seem to be nearly symptom free most of the month, but still flaring about five or six days a month -- and that is with the sweats, fever, achy and fatigue.

So I think we will see if that continues to improve, i.e. flares less intense and for fewer days and maybe finally disappear altogether.

My story: Probably bit in 2004 or 2005,(lived in the woods in Wisconsin) my LLMD diagnosed -- kept thinking I might have Lyme in October 2008 Igenix positive.

Started treatment with Doxy Nov. of 2008, and crashed with a big herx for two months. Then added Azith in Feb. 2009. Another big herx.

Continued, although switched to mino for the summer months -- just recently pulsed Flagyl alternating with the Azith and then Tindamax.

Then went off all abx for 3.5 weeks to test the waters and because I was going on a trip. Felt wonderful the whole time [Smile]

But started to flare again right on time (once a month) I am post menopausal, so it doesn't coincide with any hormonal surges.

I just need to hang in there for a bit longer. I would be willing to do the Babs treatment if she thinks, but I think I would have symptoms more than once a month with Babs. But maybe not....

Thank you all for being here for me over this long haul and many worried nights....

[kiss]

Posted by WildCondor (Member # 434) on :

Usually when you have symptom flares every 4 weeks you can use treatment only during that time (pulse therapy) and use it that way for long term maintenance.

Posted by Lymetoo (Member # 743) on :

That's good that she will treat you for sero-negative babesia. Very smart move.

Posted by Judy G. (Member # 18498) on :

Thanks for the tips.

I also forgot to mention (I think I downplay it) that my doc really believes in supplements and herbal treatments. So I am on lots of supplements too. Here is my list, if anyone is interested, with the descriptions that I looked up to make sure I understood why I was taking them:

Milk Thistle (for liver) protective effects on the liver, lowers cholesterol, reducing insulin Resistance 3xday

Digestive Enzymes - to aid pancreas

Multivitamin and extra C

Lyme Transfer Factor

CO Q-10 - heart, antioxidant, brain health

Fish, Flax Borage Omega 3,6,9 - blood circulation and blood pressure, healthy skin, joints and cardiovascular function

L-Glutamine - break sugar craving cycles, GI help, brain function

Alpha Lipoic acid - antioxidant and peripheral neuropathy (burning, itching, weakness,)improve blood sugar control, brain function

Grapefruit seed extract (Citricidal) - for Lyme cyst busting -killing yeast

Multivitamin

B-12 - normal functioning of the brain and nervous system, and for the formation of blood. It is normally involved in the metabolism of every cell of the body, especially affecting DNA synthesis and regulation, but also fatty acid synthesis and energy production.

Magnesium - for sugar cravings, muscle spasms

Nattokinase - for smoother blood flow, minimizing the chances of developing heart and vascular diseases

Epicor -probiotic yeast for immune system stimulation to increase NK cells

Kandidaplex - for yeast overgrowth