:-) 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan 08.  Started Roxi Apr 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

 Tell Paula- Good start with the roxyi [3]! It makes it clear that you are treating what has been causing her symptoms. Slow and steady on.

 

CAPi [5] for Cpni [1] 11/04. Dx: 25yrs CFSi [6] & FMSi [7]. Protocol: 200mg Doxyi [2], 250mg MWF Azith, Tinii [8] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [5] for Cpni [1] 11/04. Dx: 25yrs CFSi [6] & FMSi [7]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [8] 1000mg/day pulses; Vit D2000 units, T4 & T3

Thanks Jim.  I'll tell her.   I just didn't realise that die-off could happen that fast.   - Within a few minutes.  It wasn't an allergic reaction.

So could it have been die-off or something related?

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan 08.  Started Roxi Apr 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

Mark this is great news! Yes definitely die-off can occur within a minute or two of ingesting an agent.

Remember, slow and steady wins the race. 

CFSi [6]. Started CAPi [5] 03-07.
Currently: Roxi 600mg + Doxyi [2] 200mg . 10 Pulses done. Sauna every other day. D 7200IU

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Hunter: Don't think - experiment

Thanks Garcia.  I'll tell Paula the good news.

:-) 

 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan 08.  Started Roxi Apr 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

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this is so weird that many people start here with a small dose of a right medicine and have major die-off effect and they have to slow down (which is very wise thing to do...) I started with the regular dose with everything, i feel it works for me but i dont have any major issues. Maybe we have different bact. CPNi [1] load? I can't decide which one is better...but i am very happy that your wife gets the right reaction! It means she is on the good way just has to go alwer a bit ;)

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doxy200, azith250, NACi [12] 2400, Metroi [13] 1250(once a month), supplementsi [14], vitaminsi [15].

Thanks Sarah and Garcia.  As Paula is so ill, I think she may have a massive CPni [1] load.  Her doc who diagnosed her said she did have a lot of EBs in her blood.  He doesn't do PCRi [16] testing for it, but uses a very highly powered dark filter microscope to look for bacteria.

I would say that the more disabled you are from the bug, the higher the load, and the greater the need to start slowly. 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan 08.  Started Roxi Apr 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

Mark I am excited to hear your report as I will be starting my Doxy this week. I must have a pretty good Cpni [1] load myself as the just NACi [12] has caused some major changes in my body already. I have had really fat ankles for the last couple of years and so my feet have been really numb and painful feeling. Since taking 1200 NAC for the last couple weeks, the swelling in my ankles is going way down and the neuropathic pain has gone away from my feet. I have had much better energy as well. I worked in my greenhouse for a long time  and my husband and I went for a longer walk than I have been able to do for several months. I no longer get the NAC flue, but I had it bad for a good week. I will be reading your blog entries with interest to watch for Paula's progress.

Supplementsi [14] & NAC, starting CAPi [5] soon.

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SPMSi [17]< Supplementsi [14] & NACi [12], Doxyi [2] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [13] 1500 mg x 3 days once per month

Mark - Good luck to you and Paula on this next step of your journey.  It's a hopeful sign that Paul reacted to the Roxythromycin. Wishing you the best!

^{Daisy - Husband on CAPi [5] 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [2], Azithromycin, Flagyli [13], Minoi [18]}

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

Mark, I think its great you started the journal as I go back and read mine often to see what has gone on - because everyone forgets. Best of luck. On Wheldon protocol for MSi [10] since April, 2006.  doxyi [2] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [13] Pulses start end Sept., LDNi [20] 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 [10] since April, 2006.  doxyi [2] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [13] Pulses start end Sept., LDNi [20] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Thanks everyone.  I'll keep you all updated. I'm getting myself into this blog malarky.

:-) 

 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan 08.  150mg Roxi Apr 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

YAY, Paula, slay the beast!!!

CFIDSi [21]/ME 25yrs, FMSi [7], IBSi [22], EBVi [23], Cpni [1], (insomnia - melatonini [24], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [12] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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CFIDSi [21]/ME 32 yrs, FMSi [7], IBSi [22], EBVi [23], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Mark, the reaction that Paula had is entirely understandable considering it was the second dose of the day and twice the amount she had taken in the morning.   I would have been surprised at the speed of the reaction had it been the first dose, for like Sarah my reactions usually come in a bit slower than a couple of minutes... But second doses of the day usually provoke a reaction much faster than after the long break of nightime.

This is good news.... Painful and frightening at times but good. 

Michèle (UK) GFAi [25]: Wheldon CAPi [5] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [13] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [11] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [25]: Wheldon CAPi [5] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [13] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [11] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Thanks Michele.  I didn't realise that the 2nd dose of the day would be worse, but it does make sense.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan08.  200mg Roxi Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

Tody I didn't get a lot of reaction with the NACi [12] but I found the Vit D at 4000iu a day did wonders. I could suddenly sleep properly again and a lot of the vision problems I was getting improved significantly as did my balance.

Took my first dose of Doxyi [2] this morning. So far, 3 hours on, slight burning sensation in my gut, my right eyelid has developed a twitch and I have a headache. Other than that fine, well apart from the injuries when I fell down the stairs yesterday.

Make sure you eat something with the Doxy and drink lots of water. I have a feeling that if you don't you'll get severe acid problems. 

Berkshire, UK. Diagnosed MS Feb 4th 2008.

NAC first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuroi [27] support. Self medicating with assistance from D W.
Started Doxy 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi [26] Feb 4th 2008.

NACi [12] 2400mg. All supps. Doxyi [2] 200mg. Zithi [28] 250mg. Metroi [13] 400mg.
No GP/Neuroi [27] support. Self medicating with help from David Wheldoni [29].
Started CAPi [5] 20th April 2008. First pulse June 2008

Hey Mark and welcome. I haven't posted in a long time, but somehow I caught your blog entries.  Blogging is a good way to keep up with this "therapeutic journey" to health as we travel along. My doc has a dark field microscope in his office as well. What a gift to be able to get an "in the moment " view of what's going on inside your body. I do hope your doc has the ability to photograph/date the blood smears for a visible record. Being able to look back and see those EBi [30]'s with a specific date, record of my symptoms etc. has helped me remain sane.

How is the Samento working? Reply when you have time, and blessings,

Lisa B

EBVi [23], Chronic Lyme's, Chronic Strep and/or some other gram+ infection somewhere; iron deficiency anemia; CAP started Oct 05; current Rx: Biaxin, Cipro, doxyi [2] pulses; NACi [12], methyl B 12 injections; magnesium;

Hi Lisa B.   We are not sure if Samento is working or not.  Paula thinks it is doing some good.  I know that the mucal discharge you may get as part of the NACi [12] flu started when Paula was on the full dose of Samento back in July 07.  She didn't start the NAC til Jan 08 - and her "hockling" continues to this day.  Her doc said he wouldn't be surprised if the Samento killed the EBi [30] spore form of CPni [1] as it is a good general antibiotic.

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

Samento is a weird bird, I think. Some people cannot take more than a half drop without having severe die-off reactions. Others don't have much response. It is a natural form of Cipro, so it may be a function of what you happen to have.

I took it together with Doxyi [2] as the backbone of my anti-Lyme therapy, and have gotten significantly better. I cannot say which was the more effective med, simply that over 18 months I got much better. I do not feel that the infection(s) has been totally eradicated though, and as a result I am pursuing CAPi [5].

Another purported beneficial aspect to Samento is it's ability to limit neuroi [27] damage and blunt existing damage. Apparently some folks with Parkinsons have taken it and improved far faster than could be explained by killing bugs, as neural tissue simply doesn't regenerate that fast. I have no direct knowledge of that though, just a bit of lore I read when research it.

Tennessee, USA - Bb positive w/neuro involvement, suspected CPni [1]
Doxy/Samento for Bb 2005-2007
Started CAP 4/19/08 - NACi [12] 2400mg, Doxy 200mg, Zithro 250mg M/W/F

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Tennessee, USA - Bb positive w/neuroi [27] involvement, suspected CPni [1]
Doxyi [2]/Samento for Bb 2005-2007
Started CAPi [5] 4/19/08 - NACi [12] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [13] pulses @ 3x500mg

Quercetin & fluoroquinolones! Have googled cipro and I find this on wikipedia under Interactions:-

"Quercetin [31], a flavonoid [32] occasionally used as a dietary supplement [33] may interact with fluoroquinolones, as quercetin competitively binds to bacterial DNA gyrase. Some foods such as garlic [34] and apples [35] contain high levels of quercetin. Whether this inhibits or enhances the effect of fluoroquinolones is not entirely clear."

As Samento is a fluoroquinolone, I wonder if Quercetin could inhibit this too.  Look like I have some more research to do.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [1] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [1] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [2] Jan08.  300mg Roxyi [3] Apr08.