I've been on multiple abx since Dec. for Lyme & Bart. (Mino & zith, was on bactrim for 4.5 months than switch to plaquenil. I pulse as directed by my LLMD.)
I was enjoying some real gains in March. But April 1st, I had an appt. and my LLMD wanted me to double my Bactrim dose.
I ended up needing to stop that med all together and switched to plaquenil, but I never got back to how good I was feeling before the increased dose.
At my most recent appt (last Wed), it was decided that I need to slow down treatment, and cut all of my doses in half. I obliged, but still feel awful (maybe it's not long enough yet to notice a difference?)
I have a laundry list of bothersome sx, but at the top the last few weeks is fatigue-and it is worse than it has ever been!
So while I had some early success with treatment, the last two months have me feeling so lousy, I can't say I feel overall any better than before starting tx 6 months ago.
Any comments on my situation are greatly appreciated. I am starting to doubt that this is all simply part of healing, I feel as though I am going the wrong way. I don't think it's a Herx since I changed my meds and doses with (so far) no effect.
I missed 3 out of 4 days of work last week, and have yet to go in today due to extreme fatigue.
Thanks.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My worse symptom has always been fatigue. I have been ill for 3 years. Treated LD for 1 year with no improvement.
I am now looking into possibly having an immunological disorder. It is so frustrating.
It's like you don't know what to do. I just think if Lyme was the problem then with 1 year of antibiotics that I would have at least made a significant amount of improvement.
I think there is more going on with all of us. Possibly the mystery bug, or something that hasn't even been discovered yet.
With so many people coming to our country from 3rd world countries, who knows what diseases they are bringing with them.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I suppose I'm mainly confused as to how I could have made improvement at first, then lost it all and have now seen some symptoms get even worse than before treatment.
I want to hope that the miserable last two months mean that I am fighting this, and that I'll soon feel some benefit, but it's tough to keep that faith.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Wonko, I hear you and have recently taken a turn as you have, with not only fatigue being a big symptom, but also very weak.
I'm treating alternatively and I often ask myself, "is this the worse before I get better part". Sometimes I get scared that I'm stuck with a particular symptom, whether it be terrible relentless anxiety, headaches, vertigo, etc.
In the end, everything changes up on me with this disease.
I treat alternatively with Rife and the Salt/C protocol and I never know if I'm in a Herx or if I'm at a bad part of the disease.
I think the answer can be quickly answered if you halt all therapy for a few weeks and find a baseline.
It's impossible while on meds to do this. This should tell you where you sit in the disease.
Personally, I have done this with my Rife therapy and did cut back on my Salt/C protocol briefly and I did find I was feeling better while letting time go by.
Rather than let the bugs multiply anymore, I did resume therapy and feel like crap again.
There arn't too many illnesses out there where once you find out what it is, you have to go through more hell to get better.
Cancer is probably the one that makes you feel yucky, but even they get Morphine and whatever med they need to control their symptoms.
What do we get ? Squat !!! So we suffer while we heal. I think thats safe to say.
Your not alone, that I can tell you.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
What meds are you still on? Mino, Zith, plaquenil?
Could it be that you are not detoxing the toxins that the killing of the bugs is leaving behind? I found coffee enemas to be a great detox tool. More recently I have discovered Hulda Clark liver cleanses.
Also, be sure to drink a lot of water. Maybe take a binder (charcoal, chlorella, zeolite).
BTW, I never could tolerate Zith. It just stirred up the immune response too much for me. I did fine on Biaxin which is in the same family of drugs. I was feeling about 90% at one point, took Zith and dropped to about 50%. Bad drug for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I've been on mino since Dec, zith since maybe mid Fed, and plaq since late April.
I have been constipated since early April, which was also when I felt I started going downhill.
I manage to "go," but it is way more effort than it should be given my high fiber diet and other good practices. I took a week off from all abx late May and my tract resumed some normalcy, but I'm still "behind schedule."
So, in the past 2 months, I've changed doses, changed one of my meds, and took a 1 week break from all abx. But I still can't shake this worsened state (relative to March) and this extra fatigue. I find that concerning, and hope I can find a balance so that I can treat and tolerate this disease!
Thanks for the replies, I'm always looking for both ideas and support.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Do you take Magnesium? I would take enough magnesium that you go at least once daily. If you started going downhill when you got constipated, that sounds like it might be the problem, or at least part of it.
Do you drink enough water? That helps with constipation, too.
Epsom salts will give a pretty quick clean out.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've been taking Mg for about a month. I'm not sure how much is enough, though.
I drink filtered water all day long. Other than one cup of AM coffee, water is all I drink!
I've tried epsom salt baths, too. I tell ya, it's really stubborn! I tried softeners and miralax as well. I also switched to a higher quality probiotic.
Maybe I'll up my Mg dose bit by bit and see how (or if!) it goes...
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
If a big heaping tablespoon of Natural Calm at bedtime doesn't get you moving.......
You really are backed up! Works like a charm.
Hope you feel beter soon!
Posts: 3975 | From usa | Registered: Aug 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Have you tried one of the oxygen-based cleansers like Homozon or Oxy-powder?
Posts: 1647 | From UK | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I mean drinking the epsom salts .... it's a laxative when used that way .... but I wouldn't rely on it all the time, I'd increase mag for that.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
As the Queen of constipation, I have never found anything that works as miraculously as Fiber Force 6 from Puritan's Pride. I just bought five more bottles, they have a buy 2 get 3 free sale or something like that right now.
I am soon to hit my five year mark. (VERY heavy sigh.)
The last two years have definitely been worse. I have been bedridden for the last two years all due to profound fatigue.
A new LLD I saw recently said that I had been "severely undertreated" through my whole illness, and that was why I was worse instead of better.
She firmly believes Lyme and co infections all have to be hit AT ONCE, along with all forms of Lyme; intracellular, extracellular, and cystic, or you will not progress.
IV Rocephin helped me more than anything has even come close to. I am trying to get another line placed now so I can start it again.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
That progression of symptoms sounds a bit familiar to my sons - he developed both old and new symptoms after starting azithromycin, to the point where we had to discontinue it. I thought at the time that the zith was not effective, but now I am not so sure - perhaps it was too effective. He was on for about 2 months before we discontinued.
Zith has the property of concentrating in leukocytes which is why it has such a long half life. I am not sure if the symptoms are directly related to zith itself, the the delayed herx as zith builds up in leukocytes, or maybe something else.
Since zith is usually adminstered for short periods, I wonder if long term treatment results in leukocytes being saturated after some time, and then the nature of the zith changes.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
The only thing that helped to lift my fatigue was IV abx (Rocephin).
My energy levels increased by about 40% which is no minor miracle as the oral abx just didn't help this symptom at all.
Posts: 366 | From MA | Registered: Apr 2006
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
As quick as I posted on the Fatigue above, it's now gone.
Lyme Rollar Coaster Ride, fun, NOT !!!
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
On the constipation symptom....Tracy, if your the constipation Queen, my husband is the constipation King. The Thrones are yours. sorry, crappy humor..oh, sorry again..
Our Dr. prescribed a generic Miralax. No grit or taste and has has tried everything. Mix in water or any liquid.
You can get Miralax over the counter, but the insurance pays for a script for the generic that comes in a huge bottle.
Hope you feel better soon......
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Are you taking probiotics?
Babesia also causes great fatigue. Were there any accompanying night sweats?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit, 600 mg of Natual Calm multiple times has zero laxative effect for me. No amount of magnesium ever has. Strange?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hello I wanted to say that I have been in your position. What I have had to consider is sometimes we up the ABX too much to a toxic level and that can bring on negative symptoms. it is a balance i think and I still have to watch my doses. Not only that but even if I find a good dose it builds in me and I have to really watch that and if I start feeling that toxicity again. (which is not a herx and not a flare). It usually is easy to tell because you just feel toxic and horrible. (or I do) If I do not catch that and slow down or take breaks right away I find I get stuck in that mode onward and I get discouraged.
Just an idea of what could be going on with you. It sounds like this all started when you upped the dosage of Bactrim.
It is a delicate balance and I find I want to push upward when I feel better and think I can handle it. I have regretted that a few times and have also learned a lot from it about this disease, herxes, flares and also too high levels of the medications.
Good Luck Hope you feel better
If I were you I would continue to try to clear out your body. Do enemas and get your system flowing again and get your body cleared out and feeling better. Different meds have different half lives. You are or were taking quite few meds at one time and it may take a good week or two. I would not panic about being too stuck backwards until then or even give yourself a month. You know your body best. If it feels like a set back or relapse or flare that is one thing. If it feels like a herx reaction that is another. If it feels like too much meds and toxicity that is a third thing. Knowing and paying attention to how each of those feels can really help you know what to do and how long it takes and when to really worry most.
Hope that helps.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Thank you all for the advice and ideas! I do think I just need to find a better combination of meds at better doses. I was doing better before, it can be done again!
I eat plenty of fiber in my diet, so I'm not sure I want to try a fiber supp at this time...If anything, I feel like my gut can't handle the bulk I am giving it.
I am slowly upping my Mg supplements, and hope my body will find a happy medium.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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