First diagnosed with RRMS then onto chronic persistent lyme disease then spms and on and on and on and on.
I have been following wheldon protocol in earnest since February/08.
I am struggling along using a walker, etc. etc.
I am prepared to do this for as long as it takes in order to make any headway.
Anyone is welcome to write me back privately or regular posting. I am in need of a lot of support and I will be truly grateful for any help and direction I can attain.
LouLou
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
loulou, Check out the
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
Hi Loulou, Your blog entry
Hi Loulou, Your blog entry may have gotten a bit lost in the frenzy of posting this past weekend. What with all of Jim's Birthday wishes and other breaking news. I am going to pop this blog up to the top of the list so that more fellow MSers can send you experience, strength and hope perhaps with some of their personal details. I know how hard it can be to track back and find applicable informations when you are not feeling so well.
Blessing to you,
Louise
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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.
Loulou, My husband began
Loulou,
My husband began CAPi in May 2007 with NACi and added antibiotcs in June 2007. He continued to rapidly decline and lose function into November 2007. On Thanksgiving weekend 2007 I noticed he seemed a little more clear headed than he had been in some time.
In December 2007 some small improvements seemed to come and go. By the end of January some solid improvements had occured and seemed to be stable.
The time between initating the CAP and seeing some degree of improvement and stability was 7 to 8 months. My husband is on a very aggressive version of CAP for a very aggressive version of MSi.
Hang in there!
Daisy - Husband on CAP 5/07. Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23, Tetracycline 7-3
I have been treating since
I have been treating since June -07. I have had improvements in headaches severity & amounts, pain levels have dropped, IBSi has all but disappeared, brain fog less severe. I can do a very small amount of time on the eliptical & some basic yoga now. I am managing the home better as well.
I am planning for another year, possibly more. I shall see what God has in store for me.
CFIDSi/ME 26yrs, FMSi,
IBS, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 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___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08Hi LouLou I started CAPi in
Hi LouLou
I started CAPi in July 2007. My biggest physical problem is with my right leg foot; I loose strength and control. This hasn't changed much, but I am hopeful it will. Last year though, I was suffering from intense fatigue and brain fog, this has changed dramatically thanks to CAP.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 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 Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 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 Aug 06.
Hi LouLou I started CAPi in
Hi LouLou
I started CAPi in July 2007. My biggest physical problem is with my right leg foot; I loose strength and control. This hasn't changed much, but I am hopeful it will. Last year though, I was suffering from intense fatigue and brain fog, this has changed dramatically thanks to CAP.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 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 Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 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 Aug 06.
I'm afraid I saw no long
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Started CAPi April 2005, right leg motor function now worse
Hi ALexandra! Are you
Hi ALexandra! Are you gibbleygook on this isms? If so I have been following your travels and wondered if you were still having decreased inflammationi with high dose circumin. I was reading about your decrease in walking after you did that long term flagyli pulse. I hope you will start to see improvements BarbaraNAC and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days
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NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days
Alexandra, I'm glad to
Alexandra, I'm glad to hear from you, and I hope you are doing well. I wish you had mentioned that you really crashed hard when you baked your brains out with an infra-red heat lamp aimed directly at your head and neck. At that time you were also indulging in cannabis, a "coincidence" that I believe was clouding your judgement at the time and may still be clouding your memory now. I wish you well.
Joyce~caregiver-advocate in Dallas for Steve J (SPMS). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMS). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
It has been recently
It has been recently suggested that I stop the doxyi. which I have been regularly taking since February as well as rulid and pulsing the tinii in 3 week intervals. As yet, no noticeable improvements in particular with my balance, spasticity and walking. I cling to my walker.
My doc says possible switching to rulid/bactrim combo, 3 week pulsing of tinidazole. Do this for 2 months to see if gains may be made. Also consider something called artesunate to cover for babesia.
So , substitute bactrim for doxy for 2 months keeping all else same as for Wheldon Protocol.
Hoping for opinions cuz doctors opinions aren't written in stone, she accepts that and wants me to show positive gains sooner rather than later!
Hoping for responses??
Loulou
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
LouLou - My husband and I
LouLou -
My husband and I have found the combination of Roxy and Bactrim DS twice daily to be a key component of the agents/combos that we believe may be contributing to my husband's clear improvements.
The good thing about Roxy and Bactrim is that they are effective against both CPNi and borrelia. Dr. Stratton lists Bactrim as a preferred agent against CPN in his original patent. Also there are some small studies of Roxy and Bactrim being as effective as IV Rocephini in treating lyme's disease.
I would recommend going with Roxithromycin 300mg twice daily as opposed to Roxithromycin 150mg twice daily and Bactrim DS (double strength) as opposed to regular Bactrim. Really overcome the efflux pumps and deliver a lot of drug to the brain. All just my personal experience and opinion though.
Also - re babesia - there is a herb called Artemenisin that is considered by some to be effective against babesia. Some lyme doctors are pro Artemenisin and others are not. Probably the most effective combo against babesia uses a drug called Mepron coupled with higher doses of a macrolide antibiotic . Some lyme/cpn/babesia co-infected have reported that they did not begin to improve until they addressed the babesia infection.
Some posters here believe in keeping the doses of the antibioticsi lower to make the therapy more tolerable . Also lower doses have been tried with success by some MSi'ers here.
There are also some MS' type folks here who have needed higher antibiotic doses and more drugs at the same time to achieve treatment success.
Lots of things to consider and it sounds like your doctor has some solid ideas.
Daisy - Husband on CAPi 5/07. Roxy, Diflucan, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli,Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23, Tetracycline 7-3
Hello Loulou, I had very
Hello Loulou, I had very aggressive secondary progressive MSi and showed improvements very quickly although on a two steps forward, one back path. However, many people take months to show any improvement whatsoever, Katman (Rica) being one. In fact it was over nine months, so I before she showed any improvement at all. Dr Wheldon is my husband and he never advises swapping antibiotics that soon: you have to stick with something which is already tried and tested to see if it will work and doxycycline has excellent brain tissue penetration as well as being immunomodulatory. At the very most she might care to add calcium pyruvate to the mix, as here. It is often now added to the regime of people doing one of the Vanderbilt protocolsi. It causes no harm and might make the abxi work quicker but as yet this is all hypothesis because it hasn't been tested by the laboratory..........Sarah
An Itinerary in Light and Shadow...........Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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Loulou - I am a big fan of
Loulou - I am a big fan of the Roxyi/Bactrim combo. It seems to have been very good for my husband who has been on it since early Nov 2007.
You might consider really going for it with your doctor by taking Roxy 300 mg twice daily and Bactrim DS twice daily. Just be ready with the heavy anti-porphyria tools !
My husband is also on 600mg Rifampin once daily, minocycline 100mg twice daily and diflucan 100mg twice daily as he has a very very aggressive cousin of MS.
I believe when you have an aggressive form of MS and it is not arrested by one cocktail of antibioticsi - that it may well pay to get more aggressive in treating the MS/infection with higher doses and more antibiotics.
Dr Stratton clearly alludes to getting as aggressive as you can with aggressive MS in his original Cpni patent.
Karl's patient success story is a good example of this. I am hoping my husband will be another someday.
Daisy - Husband on CAPi 5/07. Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli, Mino___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23, Tetracycline 7-3
Hi Loulou, I did wonder
Hi Loulou, I did wonder if this was you when I first replied, but now I know!
With secondary progressive disease, if you were using a walker when you started you can't suddenly expect not to need one and you only started in February. If you look back to Daisy's first posting on this blog, her husband, who has a very vicious version of MSi, only started antibioticsi in May last year and took until November to start to show improvements and he is only just forty, I believe.
Let me just say that you sound an awful lot more together in the mail you sent me than you did at first. In my experience, the toxicity is one of the first things to clear from the brain and when it does you can feel hopeless and might even want to give up. I felt hopeless because I realised how bad I was whereas before I thought there was nothing really wrong, believe it or not. What kept me going was feeling that my right arm seemed to be starting to work again and I was determined that it would.
You seem from your first post to have started pulsing tinidazole straight away rather than leaving three months before beginning. There is nothing wrong with this and in the long run it may be better, but you maybe aren't giving yourself tome to recover from each pulse and review the situation. Pulsing straight off doesn't necessarily mean quicker results.............Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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I echoe Daisy's comments.
I echoe Daisy's comments. It's not in my signature yet, but I've been using the Roxy/Bactrim combo and have found it more efficacious. Just recently increased the dose to 300mg twice a day of the Roxy and it clearly is more effective in tissue penetration at this level along with the pyruvate.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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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