An update for the record.
After 2+ mos. off the abxi, I reluctantly had to admit that I have a new, deteriorated baseline.
Ugh.
On top of that I was worsening rapidly by the day, so restarted Azith 250 M-W-F. It has always made me feel better in the past, so am hoping that will happen once again. [??]
With the exception of two trips to the cabin, I have rarely left my office bedroom. Too weak and discoordinated. My good leg is now as bad as the other. I've also noticed upper body weakness. I feel essentially like a quadraplegic. Brushing teeth, washing up, shampooing all require much effort. Daily hygiene often takes a backseat to my energy limitations. My standards have been lowered. Almost anything I take[supps/meds] brings on such severe clonusi that I am rendered completely useless.
Severe neuralgia down my sciatic nerve in my good leg is unnerving. Twice my usual dose of Trazadone and still have insomnia. Ibuprofen/tylenol don't even touch it. Burning pain and numbness are constant and distracting.
I had blood drawn for a lyme and co-infectionsi test this week. Sent it across the border to Neuroscience Labs in Wisconsin. Not sure what to expect--results will take a couple weeks. I had a neg lyme/co- panel with Biotek 6+ yrs ago.
I feel a though I'm slipping away.
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Wheldon Protocol for rrmsii since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGii's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.
KK2 - You're not. You're
KK2 - You're not. You're right here, with us. Let us know how the azith works out.
I think I'm going to join you in that same testing venture. I'd rather go after anything and everything now, while I'm still in a pill-taking frame of mind.
I'll send you my results, once I drag my derriere out to the doctor's office for the draw.
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
KK2- I, for one, won't let
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Kitkat, we're hanging on to
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
Kathy, I am so sorry that
There, that's four of us for starters who won't let you slip away, but that's only the four who have responded so far.............Sarah
An Itinerary in Light and Shadow
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KK2, remember what we say?
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA
Hi KK2, Sorry to hear your
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
I am sorry you are not
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
KK2I haven't been at this
KK2
I haven't been at this long enough to offer much help. Just wanted to send you positive thoughts. When you get back at the antibioticsi would it be helpful to change the protocol, maybe using different antibiotics to help with porphyriai, etc? Just a thought...
Lori
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KK2,I don't know what else
KK2,
I don't know what else to say, except you're not alone! I have been in the same condition as you describe for 4 months, now. I don't know what we can expect with our lab results. I just had blood drawn, too (11 vials in all), some sent to the MDL pathogen specialty lab. It might be interesting to compare notes with results.
Unlike you, I had only taken a 2 week break from CAPi. Exactly because of what Sarah is recommending to you. Yet, I wouldn't count on restarting it to make much of a difference in your current condition. As it hasn't in mine. Have been told that I am just going to have to wait it out. That it will eventually go. That switching ABXi or adding new ones, won't improve things/make much of a difference. (Isn't this what Dr. Stratton has been advising?) But what Michele is suggesting about the efflux pumps might be worth consideration.
Also, maybe our lab results will reveal henchman viral infectionsi. Maybe viral infections have taken over? Just in case, I've started Valtrex. Although, I don't know that I'm experiencing any improvement, because of it.
But please know, we are waiting it out, together. And, that we are doing so with all this wonderful support of the others, here. They really won't let us slide away
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08.kitkat~I'm sorry that you
kitkat~
I'm sorry that you are feeling so poorly.
You are wise to also check for other causes of your illness. You are already checking for lyme and co-infectionsi. That is one place to start. Also consider getting tested for different viruses...HHV-6, EBVi, etc may be players too.
Hang in there.....Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
hey kk2,sorry you are
hey kk2,
sorry you are feeling crappy. I have you in my prayers & am glad you are going back on the abxi. It is important to leave no stone unturned whether it viral or bacterial.
could it just be the die off aftermath take it's time to clear! maybe, go crazy with the moppers for an extended period of time to catch it up?
I will see my doc in the next few weeks & have been wondering the same thing, do some retesting from 2.5 years ago- including lymes& company & a few others when I go back down to AZ.
you are not alone! I am so glad you are here!
peace
r
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 dayskk2, This cursed disease of
kk2, This cursed disease of MSi! I can't believe how many people have been flattened by it's effects. It's hard to find hope amid all of the pain and dissappointment. I feel myself grieving the loss of who I used to be sometimes. I had dreams and so did you of what you were going to do with your life and the difference you would make. Now we rely on others to care for us and we cannot contribute even to our own existance let alone the difference we wanted to make in the lives of others.
Don't lose the hope. We need you here. I, for one, appreciate you so much. Do what you can to fight. It's hard to fight when you are flattened, but if you can gain any energy from us here in this community, bleed it out of us; we will survive. I am glad you are here and wish I could give you something to hold on to you so you don't feel like you are slipping away. God bless you this day dear one.
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month
Kathy, Your cause was my
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.