merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am so sad.
After being off abx for 6 months, I have finally accepted that I am in a full blown relapse. It has happened over 6 weeks. I have no idea what set this off, maybe just stress??
What made me realize this is a relapse is that even my joints in my toes and fingers are screaming in pain. I have a sore throat for weeks now. I am nauseous and have vomited. This was all GONE!
I see my llmd the 10th of december. I will finally be able to get Igenex testing (previously tested pos thru quest) for the first time.
should I be off abx prior to testing with them or should I be put on abx now?
I am devastated although not surprised. I do not think I have the strength to do this again.
I was "only" sick 2 years, but it was enough for me. I am afraid for my safety (not now, but eventually) I think I might go crazy, and I am not being funny or exagerating. I did a few times the first 2 years.
GOd please help me.
Posts: 3905 | From USA | Registered: May 2007
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For me when I feel really bad and question my safety, I tell myself to just get through the next 5 minutes (or 1 minute, or 10 seconds, whatever amount of time I think I can stand) and then keep repeating the process, upping the time as I can, until I feel better.
Good luck with the testing and LLMD. I'm sure you can get through this again.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I also think this means you have Lyme deeply set in the brain - when I stop ABX I can now go for longer periods but always have to get back on ABX due to neuro symptoms from deep in the brain.
I look at it as progress that I can go a little bit longer, from yr. to yr., before knowing I have to get back on ABX. Also the symptoms clear up faster now too. But I still need that ABX for the tenacious spirochetes!
Why do I stop ABX - because I have been treated for many yrs. now and sometimes I just need an ABX break.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Merrygirl,
Just wanted to let you know that I am thinking about you....it stinks to have felt better and then relapse...one day at a time.
Just remember that the craziness is the disease and not you...I know that the mental health stuff is scary to think about...hopefully this time around you won't go through that part of the disease.
Get back on your meds and maybe the joint issues will clear relatively quickly...that's what I'm hoping for you.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
merrygirl, hang in there. I crashed recently after stopping abx for two weeks. I think that a cold helped it take off again. It could be that your immune system was still fragile when you came off abx the first time. Maybe have your LLMD check CD-57 again.
Dr. B does mention that some lyme patients will need abx indefinitely as ESG suggests.
ESG, can you tell us what abx/dose you use as a maintenance regimen? Thanks.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I feel your pain. I have had a bad time recently also.
The other day I was driving by a local small airport and I thought, I'd like to hop on a plane and just get away from all this craziness for a while. Then I realized - the spirochetes are inside me - How can I get away? That thought freaked me out for a while but later I was better.
I do believe that there is a plan for our lives even if it doesn't make sense now.
Hang in there, there will be better days ahead. I'll be praying for you.
Posts: 86 | From California | Registered: Oct 2009
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posted
I am on Doxy (two 100 mg 2X) and Tindamax (500 mg 2X): I now take this Monday & Tuesday then Thursday & Friday. I keep experimenting - how long can I take a break, which combo works best re. doses & days used (i.e. always use the Tidamax or only use it twice a week).
I no longer go to an LLMD as I could not longer afford it plus the overnight stay in NY State; local doc willing to help me out.
Best article that helped me: "Bell's Palsy of the Gut" by Virginia T. Sherr: explained so much docs could not explain to me; helped me understand that I still have deeply ingrained in the brain spirochetes still to do battle with! Other symptoms are so much better; these deep-seated neuro ones remain the problem after 10 yrs. of treatment/mistreatment in varying degrees.
I take a break once or twice a yr. - I know it is time to get back on when I start choking on my saliva... and that goes away when I start on ABX again.
I no longer think of it as a relapse - I am now positive it is the deep-in-the-brain stuff taking over again. I often think that I am in a power struggle with the spirochetes: if I can keep them one step behind me as opposed to one step ahead of me, then I am doing well.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
thanks guys.
I am currently on heavy duty pain meds, magnesium b12 injections, oooh Ijust realized I can take a dose of tylenol. yipee. at least it might help.
Its like I want to cry but I cant. Its awful.
My llmd is going to let me do magnesium injections IM at home. Maybe I can move up my appt.
I really appreciate everyones support. My hubby just isnt getting it.
Thanks again, melissa
Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey merry...
I do believe the worst thing I've experienced is feeling better FINALLY... then going downhill again. It has to be the most depressing part of this JUNK we are dealing with.
After years of this roller coaster ride I've resigned myself to treating as needed.
For example- if the bladder acts up... I take an antibiotic and whatever else is needed... that targets the bladder.. and treat it.
If my brain is falling apart, I'll take an antibiotic that crosses the blood brain barrier.
It is sort of like the IDSA protocol... treating only the symptoms.. but I do it with antibiotics rather than steroids or having surgeries, etc. I have MANY symptoms but usually target the worst of them... making the others more tolerable.
My goal is to not relapse badly and allow more damage to occur. I have to hit it when it becomes evident I need to.
In between targeting the symptoms I take breaks because I just can't "do" antibiotics year round.
So don't be un-merry.... ok? It can be hard but after a while it becomes part of life. Like a diabetic must get use to addressing their sugar levels.... we need to address our spirochetal levels.
Now let me see a big old smile on that pretty face!
posted
I'm sorry that you are living this again. I was off antibiotics for four years before I relapsed this summer. I hate the mind stuff the worst, but I also know that they were reduced throughout treatment and eventually all went away over time and treatment.
You have experienced great healing before and should remind yourself that healing can come once again over time.
I am about to be tested thru Igenex by my LLMD on December 7th. They requested that I be off all antibiotics for two weeks prior to this test for best results. I would check with your LLMD about what their procedure is.
This is a journey best taken only one step at a time, one day or moment at a time. I'm hoping this time around will be better for me because I have developed more resources to deal with things and we know what worked last time around.
Hang in there, and I will pray that you receive encouragement for you as you begin on this new journey.
posted
I'm so sorry to hear about your relapse. I, too, relapsed after 6 months off meds... am recovering pretty quickly after retreatment, though.
Wishing you a fast recovery!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hang on. Praying its not that bad.
Are you also on thyroid? My hands and feet hurt so
bad I could scream. Then they went numb and I felt
nothing most of the time. Hopefully you and monkey
will hang together and get better fast.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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