Hi Todybear,

The only thing that I say is that MSi [8] is a depressing disease.  I also notice that the antibioticsi [9] seem to trigger feelings of hopelessness and discourgement in me.  I am ususally a very upbeat person.  The feelings usually pass within a day or so.  I keep pursuing the path of believing that we are on to something here with the cpni [10] and that if I can't recapture what I have lost at least I can stop the progression.  Frankly, I really believe that  I am eventually going to see some improvement.

Hang in there Todybear

Tina

 

Tina-MS 37 years;EDSSi [11] 4.5   1/1/08 Wheldon CAP; Azith 250mg 3 x a week; Doxyi [2] 200mg daily, NACi [5] 2000 mg daily, started Flagyli [6] pulse 4/14/08.

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 Tina-MSi [8] 37 years;EDSSi [11] 4.5   1/1/08 Wheldon CAPi [1]; Azith 250mg 3 x a week; Doxyi [2] 200mg daily, NACi [5] 2000 mg daily, started Flagyli [6] pulse 4/14/08.

 

Thanks Tina. Why is it that we feel more normal if someone else suffers like us too? Funny how human nature works. I too think that we are on to something. I had the the thought that maybe as the brain fog lifts we realize the situation that we are in more realistically and it is grim at best at the moment. I have heard of the euphoria sometimes experienced by people with MSi [8] and a sort of acceptance that is prevalent. I wondered if that lifts and the we get a look at the way things really are and it lands us on our backsides for a bit. Just a theory. 

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [2] 100 mg

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [2] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 4 days once per month

Todybear,

 I'm sorry you've been feeling bad. In my case, I have more of a tendency towards anxiety and anger than depression. The first two weeks that I was on minocycline were aweful in terms of my mood. I was so mean to everyone, especially my fiancee. For me, it got better after a couple of weeks. Unfortunately though, Flagyli [6] brings this back times 10. Hang in there, it'll get better.

 

Houston, TX. RRMSi [13] since 12/05. Started antibioticsi [9] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [5], slowly pulsing with Flagyl

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Houston, TX. RRMSi [13] since 12/05. Started antibioticsi [9] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [5], slowly pulsing with Flagyli [6]

I have been taking anti-depressants since the 80's.  I had absolutely no problems and was in a very good place.  The psysh dr finally said, after many appointments with him, that he thought I had a chemical embalance and I have been on anti-depressants since.  Then in the 90's I was diagnosed with MS and have always thought the two were "forever joined".  I take Effexor XR.  If you don't take anti-depressants, you should consider seeing a psysch.  I remember when my dr said I had a chemical embalance, he said I needed to work on understanding that I was "OK emotionally".  He was a wonderful psyshcologist and was not a pill pusher.     

Mary Ann

SPMSi [3]. Weldon CAPi [1]; 3/10/08  NAC 2400, Doxy 200 & Azith.

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Mary Ann

SPMSi [3]. Dx 1991. EDSSi [11] 6.5.  Weldon CAPi [1]; 3/08  NAC 2400, Doxy & Azith. 7th metroi [6] pulse 12/08 

hi TB,

the depression rearing it's ugly head can be a symptom from our list from the die off!  Try upping the moppers.  I hope it gets better soon.

CFIDSi [15]/ME 26yrs, FMSi [16], IBSi [17], EBVi [18], CMV, Cpni [10], 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 [15]/ME 32 yrs, FMSi [16], IBSi [17], EBVi [18], CMV, Cpni [10], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [4] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [6]/day-3 days

With the help of my natural MD I was fortunate to have weaned off the pharma anti depressants.  He told me a person's neuroi [19] transmitters can be permanently damaged by the pharma products.

I now take Inositol, no side effects, not addictive & it works for me.  I also tried SAMe & Lithium, they worked for me as well, but the inositol was cheaper.

CFIDSi [15]/ME 26yrs, FMSi [16], IBSi [17], EBVi [18], CMV, Cpni [10], 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 [15]/ME 32 yrs, FMSi [16], IBSi [17], EBVi [18], CMV, Cpni [10], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [4] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [6]/day-3 days

 Todybear- One word: PORPHYRINS! The NACi [5] doesn't trigger porphyriai [20], but killing RB's, which the addition of doxyi [2] will do (even at half the full dose) will release stored porphyrins into the bloodstream. The keynote symptoms for porphyria are anxiety or depression, gastrointestinal distress, pain. Cytokinesi [21] (inflammatory immunei [22] chemicals) also cause depression--- it's actually called "sickness behavior." So stuff to counter endotoxinsi [23] (Vit C) and inflammationi [24] will also help. But take the anti-porphyrin measures seriously early and you'll be way ahead on this.

CAPi [1] for Cpni [10] 11/04. Dx: 25yrs CFSi [25] & FMSi [16]. Protocol: 200mg Doxy, 300mg Roxithromycin, Tinii [26] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [1] for Cpni [10] 11/04. Dx: 25yrs CFSi [25] & FMSi [16]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [26] 1000mg/day pulses; Vit D2000 units, T4 & T3

My situation mirrors yours, Todybear. I'm on day 3 of Doryx (doxycycline hyclate) and though I'm having body pain (endotoxini [27] herxy stuff), the emotional (porphyrin psych stuff) hit me hard yesterday with dark thoughts and terrible loneliness that makes no sense with current reality. I started crying uncontrollably walking down the street to the video store with my husband and started talking nonsense that my family didn't love me anymore because I was sick. Luckily it was dark out! So strange, this porphyriai [20] stuff. Thankfully rage hasn't been a big part of the picture this time around so far.

Getting up to 2400mg on the NACi [5] over past weeks only gave body pain and headache which was tough, but a breeze compared to this psych stuff. I'm chugging glucose and taking cimetidine faithfully and hoping those will be enough anti-porphyric measures since I haven't worked up tolerance to the cholestyramine yet. Today is better than yesterday, so that's something!

I hope each day gets better for you.

Best,

Marysia

 

CDC Lyme + 02/06; Cpni [10], HHV6, and EBVi [18] + 03/08. 2 yrs slow improvement on variations of CAPi [1] for Lyme. Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack 09/07 on Diflucan.

Todybear, It's called die-off. The rancid little carcasses of cpni [10] are spewing their despicable little selves and all sorts of toxic waste into you. FLUSH it. Use antioxidantsi [28], glucose, water, charcoal at night, everything that's listed in our Getting Started and What to Expect pages. Think of the amazing survival mechanism of cpn. It feels threatened and it goes cryptic, into hiding. You feed it poison (abxi [9]) and it tries to get you to stop doing that. So, it spews toxic waste into you, you feel like crud and you stop doing whatever's making you feel so bad (abxi [29]). Then the cpn gives you a little reprieve and lets up on dumping toxins into you, so you have positive reinforcement to stop taking abx. The cpn wins! Just say no. We really do have to accept that we may feel bad to end up feeling good. All those times I've said 'you will revisit your old symptoms' as you go through this, and 'feeling lousy is perversely the way you know you're killing the cpn'... they sound trite, but they happen to be true. Divert yourself, be kind to yourself and let time do its work. It will pass. You haven't suddenly lost your mind.

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

Beautifully spoken tribute to a nasty beast! My short, blunt way is much less colorful: this creature never goes quietly!

 

Rica PPMSi [30] EDSSi [11] 6.7 at beginning - now 2. Began CAPi [1] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [2] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [6] total 50 pulses NC USA

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Rica PPMSi [30] EDSSi [11] 6.7 at beginning - now 2. Began CAPi [1] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [2] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [6] total 55 pulses LDNi [31] Rifampin 8/08 again NC USA

Actually Todybear, I agree with you -- you have found your mind. The reality of this disease is very depressing (especially if you talk to neurologists). Yet last spring, when my mindfog was worse, I used to go to sleep with a big smile on my face. i was cogent to enough to realize that the happiness I was feeling was illogical. But now i am a regular on this site because the bravery, the persistencei [32], the humor and the conviction that this treatment is going to work generally helps me when I begin to succumb to misery. We are struggling to keep our lives going and we have no time for depression.  

That said, MacK's observation that the depression could be a side effect of the microscopic battle within is also true. Sarah had warned me of this before my first flagyli [6] pulse and she was right. Once I was sitting at dinner with my husband on a lovely summer evening and I looked out the window. Then i said to him, "uh-oh, here it comes", put my head down and wailed "I wanna go for a walk -- boo-hoo!" For me it only happened with flagyl but we all react differently and the variations in our own reactions are actually incredibly interesting -- if you want to think of it that way. We learn so much about our brains and bodies when they malfunction. So we shall all be much wiser people when we have that big get-together in which the MSi [8] Follies (you have heard of us, haven't you?) do our tap dance number. It's only a matter of time -- think of it as going to sensitivity-training college -- without grades or exams. Ah yes! The more you suffer, the more you learn!

PPMSi [30]-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi [1] 3/2/07 - 200 doxyi [2]; azith MWF. 4 pulses. Rockville,Md. Loo

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PPMSi [30]-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi [1] 3/2/07 - 200 doxyi [2]; azith MWF. 5 pulses.

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Sarah, I may have answered my own question but it is still good to hear it from other people that have experienced or are experiencing similar things. I think I had my first real bout of die off effects yesterday about an hour after taking my doxy dose. I felt anxious, nausea, hot, irratated, weak in my upper limbs and generally icky. I went outside and sat on the deck where it was cool with a couple crackers and a glass of water. It gradually passed and then was amazed with a few minutes of visual accuity  (still with my glasses on, just brighter than normal) and feeling very clear minded. Of course that passed too, but hopefully that will be back for longer periods of time soon. Like I mentioned in earlier notes, I have the feeling that my situation is very similar to yours by the sounds of things so have the hope that I will respond much like you did to the treatment. My family is very supportive and have made agreements with each other as to their different roles in my treatment. So, this weekend will be the addition of Azith I think, so will likely be enjoying some newfound ickiness soon.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxy 100 mg

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [2] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 4 days once per month

Tody, it is really strange to feel worse before you feel better, and also really difficult to accept that it will be a while before you can see progress.   As the others have explained the toxins will make you feel nauseous and depressed, and although this is unpleasant it is a good sign that you are having reactions, it shows that there is indeed a problem to be addressed. 

Michèle (UK) GFAi [35]: Wheldon CAPi [1] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [6] pulse. Zoo keeper for Ella, RRMSi [13], At worse EDSSi [11] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [35]: Wheldon CAPi [1] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [6] pulse. Zoo keeper for Ella, RRMSi [13], At worse EDSSi [11] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Porphyriai [20] makes me feel depressed. I reassure myself that this is the Cpni [10] talking, not the real me. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [6] for muscle pain, insomnia, interstitial cystitisi [36], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [6] for muscle pain, insomnia, interstitial cystitisi [36], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Sarah, self disclosure is very healthy in this space because when someone shares their personal experience, there is usually someone fighting a very similar battle. I appreciate you sharing your story with us and making pertinent references to your experience because I gain hope when I read about your own success.

It's darkest before dawn, but I am not afraid of the dark.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [2] 100 mg

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [2] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 4 days once per month