MediTest
Submitted by Daisy on Fri, 2007-09-14 18:24

As my husband is currently unable to work, we decided to follow the adage found on this web site from I believe a quote from Dr. Stratton to "Go As Fast As You Can" and I will add to that  "as Safely as you can".It's been a month since I updated my husband's treatment blog.  A lot has happened and yet it seems as if nothing has really happened.First, we decided not to undergo another crainiotomy - read - fishing expedition - to attempt to determine the cause of my husband's demyelinization since the ID and neurosurgeon did not exactly inspire confidence in us with their plan to test the tissue obtained  (rather it was their lack of clear plan that deterred us).  Decided instead to seek additional opinions from doctors known to treat those with wierd brain infections.  So we booked a few appointments and have started down that road.  In the meantime, my husband underwent some very interesting genomics testing - specificially looking at the genes for his neurotransmitters and detox pathways.  Without going into the whole story, we learned that he has strong genetic tendencies to be a poor methylator, poor producer of SOD and is completely missing a couple of common genes for producing glutathione plus other issues as well. Now do these matter?  Maybe or maybe not.  It seems to me that if you aren't really confronted with much in the way of toxins during your life, you avoid cigarettes, processed foods and adult beverages and you avoid cryptic type infections, which apparently my husband hasn't , - then it probably won't matter.  Of course if you live in the modern world and you aren't puritanical, well - it might.  As a result of this testing, we have been experimenting with boosting these areas with what I believe is some early success.  As I learn and experience more, I will be glad to share this potentially useful information.Also, beginning last month we tried bumping the Doxy to 400mg (200mg bid), plus the Azi 250mg MWF.  The doxy appeared to be well tolerated for about 10 days or so but while on trip to see first new doctor my husband developed very sudden loss of left arm and left leg function which persisted for about 10 to 12 days.  Walking, balance and strength really declined along with cognitive function.  Not only was that new, but also frightening and made the long trip to see the new infection doctor that much more draining.  On the trip, we dropped the Doxy back to 200mg and he took some oral steriods for a few days to make it home... in retrospect I think this was a Doxy dose escalation effect because it has mostly resolved and some other minor improvements have resulted.The first stop on our new doctor tour was late last month.  The new physician is a lyme literate doctor recommended to us in the Northeast.  He has ordered a plethora of tests and we are still awaiting the results of several of them.  Curiously, as we learned last night via the first pass of results, yet again my husband is negative on IGA, IGM and IGG for all three specific species of chlamydia and still very positive for the Mycoplasma sp (no specific species tested).   Negative for lyme co-infections, negative for brucella sp., etc... the main lyme test with bands has not come back yet.  Also, my husband's CD57 was abnormal (low) indicating possible infection.  Other tests also still pending.This new doctor, whom we liked and who seemed very knowledgable switched my husband at the end of August from Doxy 200mg QD to Mino 100 BID and told us to start working the Azi dose up.   This doctor has been in touch with Dr. Stratton in the past and is very familiar with his research and protocols.  Since switching to Mino and taking the Azi  250 MG every day, most of the left side weakness has disappeared.  My husband is not quiet as fogged out either as he was on the trip and just last night reported that some music he had just heard on TV suddenly sounds good to him again.  Wow - he used to love music and for the past 9 months or so we have been a music free zone.Also, last week, after some research and consideration,  we began trying Flagyl pulses in the single high dose format with which others on this site have experimented.  Last week on Friday,  my husband took 1000 mg of Flagyl in a single dose (Pulse #2)  and this week on Friday the same - 1000 mg in a single dose (Pulse # 3).  We plan to work the 1000 mg single dose up to 1250 mg, then 1500 mg per dose and then work that up to two high dose pulses per week as tolerated.   The first single high dose Flagyl Pulse (#2) was uneventful and if anything I saw some improvement in my husband over the past week. Results from today's single high dose pulse remains to be seen but so far so good.  Again, we feel comfortable experimenting with this as my husband is predominantly confined to home, we have no children to see after and we have ready access to steriod rescue if we really need it. My husband's new doctor would also like for us to begin adding Rifampin as tolerated in a dose esclating fashion as well as undergo a work up for possible IV Rocephin therapy.  The new doctor is reluctant to use IV Rocephin for most patients but he feels it may be warranted in my husband.  We will wait for the remainder of those tests he ordered to arrive before making any further decisions.  My husband has a three month MRI next week on Friday so we will wait until after that MRI to do or make any new decisions including add the Rifampin or changing anything else.  I guess I started this blog entry by saying that it seems like a lot has happened and yet it also seems as if nothing has really happened.  We done a lot of work and are waiting hopefully for something really good in the way of clear improvement to come my husband's way!  Rica - knowing that it was 9 months before you saw anything is somewhat reassuring. 

Daisy, and Ella, as well. Reading Michele's blog for Ella was truly scary at the beginning, too, but look how it's resolved!

You two have certainly been through the mill, but you've made huge strides in knowledge and resources. More has been accomplished than is evident, but that doesn't mean you haven't come a long way.

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

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

thanks for the update Daisy!

I am soo happy you have found a new doctor that is helpful & has actually talked to Dr. Stratton, that is very encouraging.

As I was reading about your increased Flagyl pulse it got me thinking; I know, it doesn't happen often, that my experience with my first teeny weeny pulse I had a delayed reaction over a week later, YAAA, I know.... I was shocked tooo.

Anyway, your husband is in capable hands, you are the best!

God Bless you on your journey!

Ruth

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metro

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Mac and Ruth - Thanks for your comments!

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1200 mg, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Mac's right it was a long time before we could say that Ella had made some real improvements and up to a year into the treatment there were constant set backs, especially once we started the flagyl.   But today she is jumping out of a plane.  

She is bright and organised, keeping a stable weight, able to get around with a stick.   She is setting herself a goal of two stick free days a week.   We have not seen great improvements in her walking ability and her strength and balance, at times, seem a little erractic. But she has some good days when she feels she is making real physical progress.  A post CAP deficit in her right hand has made a complete recovery, here pupils react to light almost normally from a point where her left pupil did not react at all, and her disturbed vision is a thing of the past.

But an appreciation of music indicates progress, something that was lost has returned.  That is how it starts, with small some would say insignificant improvements.

You have enough scientific knowledge to understand the possible effects of the different drugs, so I won't say be careful with Rifampicin.   Whoops I've said it.   Dr Stratton said somewhere I think that it is very effective against Cpn, but apart from the close scrutiny of liver function you have to be aware of possibly strong die off reactions... 

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele -

Thanks for your comments regarding Ella.  It is daunting to know that it took a long time before you saw any real improvements and it took a whole year before you saw some degree of stability but it also holds out hope. 

 I can certainly tell by the health and beauty that Ella shows in her recent photos that she has come a long way! 

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1200 mg, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Daisy - It is interesting to me that your husband had the genomics testing looking at the genes for nuerotransmitters and detox pathways and found that he is a poor methylator and does not have the genes to produce glutathione.  This is an area that I have been researching with my limited scientific abilities.  It is a subject that has been brought up on a CFS discussion group I belong to and it interests me greatly because a lack of glutathione seems to be one of the key problems in my immune dysfunction.  A man named Rich Van Konynenburg who is a researcher and has CFS has researched in this area for over 10 years.  After determining the importance of glutathione in the immune system he found many people who were researching this area and was lead to the DAN project for Autistic children and to the work of Amy Yasko.  Rich used to post regularly on the CFS site and shared his findings. Now he is very busy answering questions for CFS patients using Dr. Yasko's Protocol. Dr. Yasko uses the gene testing you spoke of and then has a very specific supplement program she uses to correct the methylation pathway that is blocked.  A few CFS patients tried this and started a discussion board to support people with CFS doing this, but Rich found that most CFS patients could not afford the gene testing and then also were too sick to handle the entire Yasko protocol.  So he developed a simplified Yasko approach which only has 5 supplements and is relatively cheap to use and does not do the testing.  It just assumes you have the methylation block and if it doesn't work for you, then you know you don't lack those genes. He then started another discussion group for CFS patients using the modified Yasko Protocol. When CFS patients started using this, they had amazing results.  This protocol can unblock the methylation pathways in as little as a few days.  People who were hypothyroid became hyperthyroid and had to adjust or stop their thryroid meds and he has reported that the 2 CFS patients that had developed Diabetus Insipidus as a result of the CFS( a rare occurence)that started this protocol were able to stop taking Vasopressin(anti-diuretic hormone) without a return of the increased thirst, extremely large urine output and dehydration problems. Many other CFS problems have been relieved also but no one has been on this program long enough to know long term effects.  Of course this interested me greatly because my DI is a great problem for me.  I wrote Rich about me starting the modified program as he and I had discussed in the past how my DI and Lyme disease and CPn were effected by the glutathione problem.  He wrote me back that the protocol has die-off effects because it allows the immune system to start functioning normally and immediately starts clearing toxins, bacterias and viruses from the body.  He was concerned that using the Modified Yasko protocol along with the CAP could cause too much  die-off for me to handle with all the problems I have.  I was hoping I could use them both and normalize my immune system and have a better chance of completely irradicating the Lyme which seems to be a major problem from what I have researched.

I am probably giving you some info that you may already have since you had your husband tested for those specific genes.  I know that Joyce has referenced the methylation block and production of glutathione before and even put up a site to read one of Rich's papers. It involves the use of specific types of B-12 and folate and some other things.  I know Joyce mentioned it to Odhilla when she started giving info on the importance of B-12.  Here is another site that gives a paper that he presented to a CFS conference in January that explains his research. I don't know if this is the direction you are speaking of in experimenting in some areas with your husband, but I would be very interested in knowing if it is the same or if you have found a different way to stop the methylation block.  I think this is an important area to explore because I have CPn, chronic acitve EBV and CMV as well as Lyme and who knows what other lurking infections.  There is a reason my immune system and most every one else's on this site has allowed these infections to remain chronic and make us very sick when a  huge percent of the general population carries most of these dormant in their bodies and don't get sick at all.

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, CPN, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDN,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, Cpn, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses   1500mg- 5days-every 3 weeks,

Lynda -

I can't tell you how much I appreciate your taking the time to send me this VERY useful information!

 Like Joyce I have been all over the DAN/autism websites as well as I have read a couple of Rich Van Konynenburg glutathione papers.  I look forward to reading and researching the rest of this thread regarding Dr. Amy Yasko's work.  Sounds like a very interesting and promising lead!

Again, many thanks for bringing this to my attention!

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1200 mg, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Thanks Jim, for posting that info.  I had not read that particular report from Rich.  I Have a 17 page e-mail that he posted in July that explained the simplified Yasko Protocol but is much more positive in that he had gotten responses from well over 60 people, he lost count after that, who had tried it and though had die-off reactions had some very significant good responses.  He also had changed the protocol to 5 supplements rather than 7.  Some people who had been sick for a long time were able to tolerate the treatment.  He explained in the e-mail that his initial report which is on the site you posted was not very positive about persons trying the modified version because he had no experience to go on.  Now he is encouraged that more people can be helped by the simplified version than he thought.  He did report a few adverse effects and so recommends that anyone trying this approach do so under the supervision of a doctor who has researched this protocol and understands it.  He also gave several suggestions to make the protocol work better and what to watch for.  I wanted to post this info but all I have is the e-mail which is very long.   It probably wouldn't be very helpful to those of us on this site as we are all on abx.  But it is something to think about for those who are close to finishing this protocol to try to make sure the immune systems are working properly to keep the bacterias and viruses from returning instead of having to go on intermittent abx therapy.  Just a thought.

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, CPN, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDN,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, Cpn, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses   1500mg- 5days-every 3 weeks,

Lynda,  Thanks for this information.  Having listened to many of the critical lectures on www.danwebcast.com, I was intent on ordering the DAN treatment book and its latest update.  I might still get it, but it's terrific to have this additional resource.  Hopefully, there will be more cpnhelp.orgers checking out the material we have been investigating, and more discussion will be generated. I think greater interest in this area will be good for the site and its users, because:

1) Fixing the other problems will help us get well on the CAP better and sooner.  I think many of those who have the toughest time with the CAP would benefit greatly by addressing their other issues, and I especially mean those who give up, thinking the CAP is not working for them or making them worse.

2) It will help us to stay well after the CAP is done.  There are reasons why some people get chronic infections and develop chronic inflammatory illnesses while others do not.  Correcting what was wrong in the first place makes the best kind of sense for staying well in the future.

I only wish I had discovered DAN during those months when we were looking for a CAP prescribing doctor and waiting for Steve's first appointment with Dr. X.  It would have been very advantageous to have been working on getting his GI problems straightened out.  Our attention to the gut issues was only fractional until the past few weeks, and our new expanded and intensified efforts are already paying off (thanks to some helpful cpnhelp friends).

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce - I agree with your post above whole heartedly!  Points 1 and 2 are excellent!

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1200 mg, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

At every turn it seems that NAC is the most important supplement we take. It is with good reason that we should start with that, if it mobilises the metabolism as well as support the liver and kill EBs and moulds. What more will it be shown to do for us in the future?

It strikes me that Rich Van Konynenburg empirical protocol for kick starting the metabolism contains many of the vitamins and supplements we already take.  Here is is with some notes about prices that I have added:

 

Protocol: The simplified approach would involve giving the following oral supplements daily, all of which are available from Dr. Yasko’s supplement website at http://www.holisticheal.com
 
    *¼ tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis). evitalhealth.com $17.49 for 60
 
    * ¼ tablet Intrinsi B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor) evitalhealth.com $16.45 for 60
 
    * (up to) 2 tablets (It’s best to start with ¼ tablet and work up as tolerated) complete vitamin and ultra-antioxidant from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.) 
 
    * 1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids) iherb $24.19 for 60 is cheaper than holisticheal
 
    * 1 sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract) wellnessworks.net $24for 100
 
    * 1 capsule SAMe (200 mg S-adenosylmethionine) I herb $20.98 for 60
 
   * 1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.) 

 

Does anyone see any advantage in taking the supplements he recommends in the link that Jim posted above over those that we benefit from by taking our supplements.   A couple of them are b12 variations, maybe they work better than the ones we take?    

The only completely new/different supplement I see on the list is  Phosphatidyl Serine Complex.

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Daisy and Joyce - thank you for giving such a positive response to this info.  It is a complicated issue, particularly for those of us already taking the abx.  Like Joyce I wished I had found this info before I started the abx also because I think it would have been better to improve the immune system first and my endrocrine problems and then had a easier time of using the abx.  But now it seems that it could be difficult to use the program and the abx together because of increased die-off.  Although Rich did tell me that he had not had any experience with anyone doing both at the same time.  So he is giving his best educated guess.  He is not a physician, so is hesitant to give out advice.  He can only suggest from his best educated guess and experience from people using his simplified version and reporting to him.  Daisy, You are in a better position with your huband since you have already done the testing and know exactly what his problems are.  The question is do you risk adding this to his abx.  I have wondered if I should discontinue the CAP temporarily and try the 5 supplements in his simplified protocol which are the first five listed in the site Jim listed.  If I don't respond by improving my DI and thyroid then I will know I don't have the methylation block and then just go back to the CAP.  But I hate to stop the abx now when I am finally reaching the tissues where the bacteria is and killing it as evidenced by me finally having definite die-off reactions.  I may just wait until I am not reacting as bad and do a short trial with very small doses of the treatment supplements and see how I do.

Michelle - I had my nutrtionist look at the program and she said the supplements are in very different forms than what I was taking and modified my supplements for me to add this protocol into them.  That was before Rich wrote me with his cautions.  The supplements Dr. Yasko uses are very different in the forms that they are in from what are recommended on this site.  For example she uses a very special formulated Folate and we use Folic acid.  Also there are things like intrinsic factor added in and the Multi vitamin is very specific to the needs of this protocol.  It is the only thing that you have to order from her website because she designed it.  The other products are made by Metagenics and can be ordered anywhere Metagenics products are sold, though I noticed most of the prices are exactly the same at her site as the site you mentioned.  One thing that I learned from my nutrtionist is that the form of the supplement is very improtant.  I was taking the wrong kind of Vit C and when I went back to the type she wanted me on I did much better.  This protocol and the types of supplements listed is very specific for unblocking the methylation cycle if a person has that problem.  Rich's simplified protocol assumes you have that block.  It is basically her step 2 of her program and is the step that unblocks the methylation cycle.  Rich gains nothing from all the work he has done to try to help CFS patients and take Dr. yasko's program and make it workable for those who can't afford the testing and the entire Yasko Protocol.

Joyce or anyone else- I have tried to find the link to the specific e-mail that Rich submitted to the CFS site so I can give it here, but I don't know how to do that.  It is 17 pages long and has a lot of good info.  If anyone can tell me how to do that I would appreciate it.  The CFS/ME/Fibro site is a Yahoo discussion page. I have looked through his papers and can't find it anywhere else.  It was written in July and  is much more updated then the one he wrote in Jan. that Jim posted the site for.

There is a Yahoo discussion group that has been established for CFS patients who want to try the simplified Yasko Protocol.  It is http://health.groups.yahoo.com/group/simplified_protocol_support/  I haven't gone there yet, most of my functional time of typing and reading has been spent here.  But I plan to and maybe can find someone who is trying it and taking abx at the same time.  You obviously don't have to be a CFS patient to have this methylation block because Autistic kids have it and Daisy's huband who has MS has it.  So I think it would be applicable for anyone with an illness that has greatly affected their immune systems like all of us have.

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, CPN, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDN,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, Cpn, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses   1500mg- 5days-every 3 weeks,

Thanks for that information Lynda, I will do a bit more research on that. I actually have Autism: Effective biomedical Treatment and this is what alerted me to the importance of what you are saying. I would never describe Ella as autistic, certainly not in the same way as the mildly autistic children I have worked with, but certain things in the description of their early years rang a bell with me. Particularly the collic and the fact that she would only feed once in 24 hours, at night. Later the neurological events and the thyroid problems are also tell tale.   So I shall do some more investigation...

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Lynda,  I haven't had a chance yet to thoroughly read your links, but for what it's worth, Steve's doc has had him on a rx methylated B-complex since beginning his treatment last year (a few weeks before starting the abx).  It's called Metanx, and I have no idea why it's a rx medicine.  The only thing I do know about buying this methylated B-complex as a rx med is that it's CHEAP!

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

For those who are curious about this genetics testing - here are a few examples  from my husbands.  This is  an excerpt from a PM message I sent someone on this site a while ago.

This is all genomics testing.

1) Tested postive for IL-1B chromosome 2-31C-T gene which slightly increases IL-B1 production leading to increased inflammationi and suppressing hydrochloric acid in the stomach which rips up the mucosal lining and sets you up for leaky guy, dysbiosis, food sensitivities and further inflammation.

2) Tested positive for 5,10 methltetrahydrofolate reductase methylation.  This is a gene that has a 40% higher positive affinity in Italians.  This genotype puts you at risk for elevated homocysteinei AND S-adenosylhomocysteine (SAH).  If SAH is elevated you get disrupted neurotransmitter metabolism (possibly explaining  wierd neurotransmitter results) and disrupted synthesis of DNA, carnitine and coenzyme Q10.   The non methylated B's are probably not being processed.

3) positive for catechol-o-methltransferase (COMT)methylation gene.  This regulates neurotransmitters and if you have moderately deceased activity you also have - ta da - IMPAIRED METHYLATION

4) Absence of gene for Glutathione S-Transferase (GST) mu-1 Detoxification.   GST as you know is responsible for Phase 2 detox of products of oxidative stress.  This probably greatly reduces your ability to detox .  

5)  Glutathione S-transferase Pi-1 1105V gene- (GSTP) Detoxification.  GTSP1 is located primarily in the BRAIN and lungs.  Also responsible for phase 2 detox of xenobiotics, carcinogens and products of oxidative stress!.

6) Superoxide Dismutase-2 (SOD) A16V gene - Detoxification. Sod converts reactive oxygen species (ROSi) into less reactive H2O2.  Located within cellular mitochondria and uses manganese as cofactor. Adequate SOD protects the cells from products of oxidative stress.    Some doctors give IM injections to cancer and cardiac patients of SOD.

I don't know if this will help anyone but I thought I would share a couple of the results that are applicable to this discussion.

The question of course becomes, how do you use this information to enhance health and the clearance of infections?

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1200 mg, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Daisy, does your husband have any idea what is going on and what you are doing? Once in a while I think of the parents of the young fellow Lorenzo ______, to compare you to. That is as close as I can come except for David Wheldon. Our world, especially this little one, if filled with heroes.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP 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 44 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica - It would be my greatest pleasure some day to show my husband this blog and to have him read it and to really understand everything in it.

I don't feel like a hero.  Just a person backed into a corner who is  fighting for her life.

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1800 mg QD, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

From the Townsend Letter (2006) on Methylation by Amy Yasko. From everything I understand Amy Yasko has some huge fans and some equally strong detractors.

 Here is the link.  Here is also a copy of an article that she wrote for  Annals NY.

Interesting excerpt from the Townsend letter article

Methylation and the Immune System

New T cell synthesis is needed in order for T cell clones to expand and respond properly to an immune assault. T cells are needed to help to control the B cells and to balance TH1 and TH2 responses. If there are methylation cycle problems or mutations, you may have trouble making the bases that are needed for new DNA synthesis. If you cannot make new DNA, then you cannot make new T cells and as a result you may lack immune system regulatory cells.The immune system has the B cell "arm" that makes antibodies, known as humoral immunity and the T cell "arm" known as cellular immunity. If you are having trouble making new T cells, then the immune response may become more heavily weighted in the direction of B cells. The B cells have the ability to respond by making antibody, or auto antibody rather than making the range of T cells that regulate as well as fight infections. B cell clones expand and then are available for the future. So there is a somewhat greater need for new DNA synthesis for the T cell response than for the B cell response.In addition, individuals with methylation cycle mutations are more at risk as they will have problems making regulatory T cells that help the body to control the B cells and prevent autoimmune antibodies. Auto antibodies can occur as a result of imbalances in immune regulation. If you are not making adequate T cells (methylation pathway mutations) then you may lack regulatory T cells and can end up with auto antibodies.Methylation also plays a role in the ability of the immune system to recognize foreign bodies or antigens that it needs to respond to. Research has shown that methylation is decreased in humans with auto immune conditions. Impaired methylation of T cells may be involved in the production of auto antibodies. Studies from patients with systemic lupus erythrematosis (SLE) have shown that their T cells are undemethylated. Impaired methylation of T cells may also be involved in the production of auto antibodies. Studies from patients with systemic lupus erythrematosis (SLE) have shown that their T cells are undemethylated.As proper methylation function is restored, it should help in regaining immune function regulation. In several cases I have seen the level of autoantibodies decline after proper methylation cycle supplementation.Methylation of DNA is also used to regulate immune cells. Immune receptor DNA is initially in the ”OFF” state and is maintained that way until the immune cells need to differentiate. At that time the methyl groups are removed from the DNA in a highly regulated fashion.

 

 

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAP 5/10/07. Doxy 200 mg, Mino 100 BID 9/1/07, AZI 250mg QD 9/10/07, NAC 1800 mg QD, HD Flagyl Pulses, Novantrone, Prednisone & daily lb of supplements.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

This is certainly worth persuing for me daughter in particular, and I am going to give Rich Van Konynenburg modified Yasko protocol a try with caution to see if it brings any improvement in Ella's thyroid condition in particular.   I'm hoping that starting with small doses of some of the supplements with be mild enough not to cause too many difficulties.   I'm particularly looking at the different B12 substances, as currently the B12 does not seem to make much difference to her condition. (she ran out of them for a few weeks and there was no difference in how she felt on or off them)

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I am not sure if it is the B12 specifically, but, sometimes my muscles get all cranky & tie up in knots.  It seems those are the days when I may have missed a round of B12.  I am going to have to keep a closer eye on it.

blessings

r

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metro

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Resurfacing this methylation thread to ask how folks are doing on either the Yasko or simplified Yasko (via Konynenburg) methylation protocol in addition to CAP treatment for Cpn. Thanks for any updates/thoughts you can share.

I'm about to order the supplements outlined in the thread here for the simplified Yasko plan: the Folapro, Intrinsi B12/Folate, Phosphatidylserine complex, SAMe, and Perque B12. I planned to skip the optional RNA supplement and the multivitamin in hopes I had those covered or could do without them.

I've read discussion that you can feel sick at first on the methylation supplements (if they're working to clear a methyl block I understood), and I also read recommendations not to start them while on the CAP (perhaps because of adding to the body burden while the block clears?). Has anyone gone ahead with them while on CAP, or did you stop the CAP temporarily to get on the methylation protocol?

I also read that if they don't work, Konynenburg then recommends proceeding with the costly Yasko testing to figure out how to fine-tune the program to fit your needs. I wondered how you knew if they weren't working.

My guess is if they work, you'll feel sick at first and then see improvement after getting over the hump. If they don't work I suppose you'd feel no change. Does that sound right?

Thanks a bunch,

Marysia

NAC 2400mg/dy, Doryx 200mg/dy, ramping up on protocol. CDC +Lyme FMS 02/06; Cpn, HHV6, and EBV + 03/08. 2 yrs slow improvement on variations of long-term antibiotics for Lyme. Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack 09/07 on Diflucan.

Marysia

For my husband we didn't stop the CAP to add the methylation supplements.  We just carried forward.  Have zero idea whether any of the methylation supplements helped him but we continue with them to this day.

I believe Raven who posts here has had some experience with using the abbreviated methylation protocol.  Not sure who else has really tried it and stuck with it.

Believe that SS who posts here sometimes said Dr. Powell had put her on a methylation protocol pre-CAP and that it was making her feel quiet ill.  You might search for her blog and read about her experience.

You might also start a forum topic on your question to see if that will draw out more responses!

Whatever you decide good luck and good healing!

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012.