Doglover,

Someone with more experience with the meds will come along for those questions.  

As for the signature, it seems when you start a blog your signature won't automatically show, so there are two ways to work around this:

1. After starting a blog, reply to the blog and the reply will show your sig.

2. Open another window in any thread showing your "post new comment" box with your signature in it and copy the signature and paste it in the window of your new blog entry.  This is a little more complicated for folks not used to posting but either way will work. 

MP for 3 1/2 yrs. NACi [5] 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi [6]/FMSi [7], Hashimoto's, Psoriasis, PA, IBSi [8], Secondary Addison's

When I change what I believe I change what I do

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NACi [5] 2400 mg, Zithi [9] 250mg/MWF, minoi [10] 100mg/BID, Tinii [11] 500mg/BID pulses, Iodoral 25mg, Supps, CFIDSi [6]/FMSi [7], Hashimoto's, Psoriasis, PA, IBSi [8], Secondary Addisons

Don't believe everything you think!  

This is so puzzling to me, Linda. Are you taking Doxyi [12] and Azith and the supps, too? John (farandwide) had the same thing happen which surprises me no end simply because the trio of Rifampin, Doxy (those two alone were ok) and flagyli [13] knocked me flat for months and then I did all four for about five months and by that time - about a year and a half - I had improved. Daisy has been very aggressive with her husband and it has been effective when no one expected it to be. We have so much to learn. She may have good suggestions. Still, no progression is good - it gives you time to rethink the battleplan.

 

Rica PPMSi [14] EDSSi [15] 6.7 at beginning - now 2. Began CAPi [2] Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 50 pulses NC USA

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Rica PPMSi [14] EDSSi [15] 6.7 at beginning - now 2. Began CAPi [2] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [12] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [13] total 52 pulses LDNi [16] Rifampin 8/08 again NC USA

It certainly is good news you have not gone backwards!  the more technically minded should be along soon to help with that.  In the meantime, maybe reply to your post so that your signature shows up.

Blessings

CFIDSi [6]/ME 26yrs, FMSi [7], IBSi [8], EBVi [17], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [5] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [6]/ME 32 yrs, FMSi [7], IBSi [8], EBVi [17], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [5] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

 Linda- you may want to have your doc consult with either Dr. Stratton or Dr. Sriram at Vanderbilt. If you aren't getting reactions any more it's either time for some other angle, like a course of rifamycin if you you can afford it along with some other agents that increase it's potency, or perhaps time to move to intermittent protocol if you think you've killed off the bug. 

CAPi [2] for Cpni [18] 11/04. Dx: 25yrs CFSi [19] & FMSi [7]. Protocol: 200mg Doxyi [12], 300mg Roxithromycin, Tinii [11] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [2] for Cpni [18] 11/04. Dx: 25yrs CFSi [19] & FMSi [7]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [11] 1000mg/day pulses; Vit D2000 units, T4 & T3

Wait, wait, wait - you've only done it for two months? And you did say you noticed additional weakness when pulsing. I'd say that's still a reaction. And that's still progress, though it may not be manifesting itself in walking ability or dexterity. Yes, I agree you should look into advice from Stratton or Sriram, but don't discount the fact that the med does seem to be doing 'something' in the meantime.

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

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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

In my experience Linda you have to expect the unexpected.  My second to last Flagy pulse passed with no real impact and I was feeling good, but just as I am thinking maybe I have got through the worst of this, I have a pulse that knocks me sideways.

So my advice would be not to jump to any conclusions yet, just keep going and enjoy the quiet times. 

Malcolm

Doxyi [12] 200mg since 13 Sep 07 (100mg since 26 July 07), Naci [5] 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi [3] Aug 06.

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Malcolm

Wheldon Protocol since July 07. Doxyi [12] 200mg since 13 Sep 07 (100mg since 26 July 07), Naci [5] 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi [3] Aug 06.

Hi Linda, Jim advises you right. Rica might be right as well. Many of us are respond well to the protocolsi [21] we use , but we know an unlucky bunch of non responders that left us. It is time for you to see someone to supervise your treatment who will assist you until you well. You might need testing for Borrelia burgdorferi and co-infectionsi [22], most common are bartonella group, Anaplasma phagocytophila (Ehrlichiosis), Babesia microti. There is a bacterium out there called by Dr Burrascano BLO (Bartonella Like Organism) that is only diagnosed clinically by not getting ahead with treatment of diagnosed Lyme disease and responds exclusively to 3 months of Levaquin, not in connection with any other antibiotic. Some people might need antiviral medications to get the proper response to antibioticsi [1]. Few European specialists test their patients for parasites. They found they need to use antihelminthic agents for couple months before the patient becomes responsive to the antibiotics. There are many possibilities to achieve cure. You need to see a specialist. Best wishes Barbara Used to have multiple sclerosisi [3], on the intermittent Wheldon protocol since March 2006, EDSSi [15] 0 for over 4 years

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Cured of multiple sclerosisi [3], on the intermittent Wheldon protocol since March 2006, EDSSi [15] 0 for over 4 years.

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I think it's time for a road trip!!!!! Load up the motor home and head to Tennessee!!!!!!!!!(only about 1000 miles away!!!) We'll make it a vacation. Great area for country western song lovers. lol Anyone have Dr. Sriram's e-mail so I can make an appointment? I've never had any testing done to determine what infectionsi [22] I am fighting so it will be good to get that done. My neurologist isn't flexible at all. She will have nothing to do with the protocol. Thank you all for your input. I'm not giving up-just wondering if I'm as good as I'm gonna get or are there other options. I'll keep you all posted. If there is no wind..............row New Hampshire USA on CAPi [2] since 2-4-2006 for MSi [3] Currently on doxyi [12] 100mg 2x day, rifamapin 150 mg 2x day, azithromicin 250mg, m,w,f and 500mg flagyli [13] 3x a day for five days every three weeks, NACi [5] 2400 mg, most of the sup

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If there is no wind..............row New Hampshire USA on CAPi [2] since 2-4-2006 for MSi [3] Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days one week a month, work up to 3 grams calcium pyruvate 5 days

Great Linda, Yes, It seems many find out they do have co-infectionsi [22] here. Let us know what you find out. On Wheldon protocol for MS since April, 2006.  doxyi [12] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [13] Pulses start end Sept., LDNi [16] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [3] since April, 2006.  doxyi [12] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [13] Pulses start end Sept., LDNi [16] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

As you are from the northest, there is certainly an increased risk of Bb and related co-infectionsi [22] being involved with your condition. It appears that CAPi [2] is pushing all of the right buttons for the Bb part of that, but some of the co-infections require significantly different treatment.

Babesia is a malaria-like bug that responds to anti-malarial trreatments, but generally doesn't respond as well to conventional abxi [1]. As with many of these intracellulari [25] bugs, Babesia is notoriously difficult to diagnose.

As was mentioned previously Bartonella is another one to consider, as well as Erhlichia.

I came at this from the Lyme side, so I have already been down the road of ruling out these common co-infections. The sense I get from my research is that having multiple chronic infections becomes even harder to deal with because they tend to protect or mask each other. For instance, I have heard that it is virtually impossible to eliminate Bb until the Babesia has been dealt with.

But bring your motorhome on down, you'll be right at home! We get many, many folk from the northest visiting our fair state. While you're in the neighborhood, be sure and stop in the Gatlinburg/Pidgeon Forge area. My baby sister got married yesterday in Pidgeon Forge (home to Dolly Parton's Dollywood and some of the largest outlet stores in the country), and man was that place a zoo. Took me an hour to get there, and then an hour to get across town...and the town is about 5 miles across. And it gets even worse after school is out...yikes! But folks apparently enjoy it...they keep coming back!

Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPni [18]
Doxyi [12]/Samento for Bb 2005-2007
Started CAP 4/19/08 - NACi [5] 2400mg, Doxy 200mg, Zithro 250mg M/W/F

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Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPni [18]
Doxyi [12]/Samento for Bb 2005-2007
Started CAPi [2] 4/19/08 - NACi [5] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [13] pulses @ 3x500mg

Doglover - I agree whole heartedly with LifeOntheIce advice above!

 Sending you a PM.

My husband was on Doxyi [12], Azith and FLagyli [13] and continued to get worse - it took high doses of several antibioticsi [1] to arrest (knock wood) his disease and to begin to turn things in a more positive direction.

 

^{Daisy - Husband on CAPi [2] 5/07.   Roxyi [27], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Minoi [10]}

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Daisy - Husband on CAPi [2] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

"I'm not as good as I once was, but as good once as I ever was" -- I'm sorry, but after reading your blog again this AM, this came to my mind -- current favorite country western song -- this was about 30 minutes after I threw up my meds.  I think I'm going a stop having my one cup of coffee as it seems too harsh on my stomach.  Linda, if you go, travel safe.  

Mary Ann

SPMSi [28]. Weldon CAPi [2]; 3/10/08  NAC 2400, Doxy & Azith. Phased in with little to no reaction except am weaker. 

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Mary Ann

SPMSi [28]. Dx 1991. Weldon CAPi [2]; 3/08  NAC 2400, Doxy & Azith. 4th metroi [13] pulse 8/29/08 

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Hi Mary Ann--I'm a counry western fan too. love it!!! Make sure you take your meds with food, especially doxyi [12] and take doxy one at a time an hour or two apart. I was in the middle of JC Pennys last week and took two doxy only having had a small salad for lunch and in the middle of ringing up my order I had to run to the bathroom and throw up. I forgot that I have to have a regular meal when taking doxy and I should never take two at the same time. I take all my meds with food but doxy is the only one I don't take two at the same time. So I wouldn't give up coffee--just seperate the times you take doxy and take it with food-like one at breakfast and one at supper time. Well I just got word there is a doctor in Connecticut that I can go see about the protocol so I'm gonna try to see him. Lots closer-only about three hours and we do that all the time traveling to dog shows. Linda If there is no wind..............row New Hampshire USA on CAPi [2] since 2-4-2006 for MSi [3] Currently on doxy 100mg 2x day, rifamapin 150 mg 2x day, azithromicin 250mg, m,w,f and 500mg flagyli [13] 3x a day for five days every three weeks, NACi [5] 2400 mg, most of the sup

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If there is no wind..............row New Hampshire USA on CAPi [2] since 2-4-2006 for MSi [3] Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days one week a month, work up to 3 grams calcium pyruvate 5 days

It is strange isn't it.  Sometimes the doxyi [12] just hits you like that, even with food!

CFIDSi [6]/ME 26yrs, FMSi [7], IBSi [8], EBVi [17], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [5] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [6]/ME 32 yrs, FMSi [7], IBSi [8], EBVi [17], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [5] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

Thks so much, Linda.  I thought I had read it's best to take w/o food!  Am glad you fnd dr in Conn. You need to save your big trip for the Grnd Canyon. Maybe I'll meet you there as I haven't seen it either. (actually I'll probably not)

Mary Ann

SPMSi [28]. Weldon CAPi [2]; 3/10/08  NAC 2400, Doxy & Azith. Phased in with little to no reaction except am weaker. 

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Mary Ann

SPMSi [28]. Dx 1991. Weldon CAPi [2]; 3/08  NAC 2400, Doxy & Azith. 4th metroi [13] pulse 8/29/08