Cpnhelp.org

Wow, Joyce, all this and treating yourself, too? It's good to hear he's improving again, frustrating that you have to travel cross-country to find a Lyme doctor and exhausting to read the hoops you jump through on a near-daily basis. Like this isn't hard enough, but that we have to fight the system to get our medical needs met. I could dearly have used someone like you in my corner through treatment and Steve's story makes me profoundly grateful my MSi was caught so quickly and treated so intelligently by a caring physician. My outcome would not have been so good if I had Steve's load and no Joyce to help me through it! You two ARE beating this and that's what's important.

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

When things go quiet in certain quarters you do wonder what is happening and if things are progressing in the way we would like to see them progress.   So I'm really happy to hear that things are at last moving forward again for Steve and that he has managed to hold on to his job through it all.  

It is hard to do battle with the medical profession whilst at the same time keeping your self conficence that this is the way to go forward.   I think of you both often and I'm really pleased that this news is good news.

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

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

Joyce, I think it's a sign of a recovering immunei system, too. Better to have cold symptoms than an unexplained flare - up.

Still, it would be nice if our immune systems would just email or something instead of making our noses run. Hang in there!

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

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Well, I'm right in the middle. I've had one cold since starting abxi, about ten months ago. Compared to twice-yearly walking pneumonia, I'll take it. What I did notice was how efficiently I recovered from it. No hanging on, no lingering symptoms. Felt flu-like, had a cold, it left. Four days, max. Felt much more 'normal' than the few years prior.

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

Joyce -

Thanks for posting an update! 

You are doing such a great job of advocating for Steve!  I wish it wasn't so hard or so frustrating for you and for so many of us in finding the right doctor.  It's maddening to have to fight so hard to get effective care when you want to spend your energy and resources fighting the disease.

Would you mind to tell us more about Steve's Igenex test?  I find it so curious how many here seem to be infected with both CpNi and lyme.  Hmmmmmmmmmm....

Regarding Steve's cold, it's funny but I agree with both you and Sarah on this one. 

To your point I think it's a good sign that you can observe visible signs of Steve's body mounting an immunei response to a viral intruder.  It seems for so many on this site that one of the early signs of success some of have experienced is viral flares (fever blisters, shingles, etc...) which seem to indicate that the body is mounting an immune response to something besides "self".

To Sarah's point I think it's a good sign when you only get a clear immune response that handles the problem quickly without making you ill for days in the process.   In this case, you have a working immune system that is moderated and not hyperactive. 

Of course, different coxsackie viral encounters have different virulence and can certainly induce greater immune response.  So who really knows... the common cold has always been widely hypothesized.

On a happy note, there have been some modest studies that seem to indicate that generous supplementation with probiotics and digestive enzymes can head off colds!

I am glad to hear that Steve is better overall.  Good Luck with your upcoming doctor's appointment!!!!!!!!!!!!!!!!!!!!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/07.  Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxyi, Azith

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

Joyce, those of us watching and waiting do just that: watch and wait. It is good to hear from you; when Steve walked to jury duty, it recalled visions of my own jury duty, and I was thrilled. Then came the complications which you have been battling valiently and grimly for a long time - and now are finally making headway. I have been mulling, too, the numbers of us who are co-infected with both lyme and cpni. When I was a kid, my sisters, my dad, and I used to ride all day in the Wyandotte State Forest in Indiana and would come home with multiple ticks, not even noticing the ones we didn't find till they were sated. One of my sisters is an RN and has asthmai and MSi; the other has chronic bronchitis and now high blood pressurei. I began with Rifampin and Doxyi and was physically and mentally befuddled for months. I now wonder if I came into this with the very same co-infection and got it under control.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 49 pulses NC USA

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

katman, I know that Rifampin may be down the road for me. And I feel blessed to have stumbled onto this sight in a near stupor taking 400mg a day Doxycycline which is considered by my lyme aquantances to be a leas an adaquate dose of it.  For me the usual lyme treatment with high doses and jumping from hepato toxic forms of antibiotics would make Louise a very sick girl.  I asked a question a good time ago now and got the thumbs up that this Capi would likely get to both of these uninvited guests that I am harboring.  They are both crafty and elusive bacteria and thank goodness these abxi are broard range enough and in good combination to send them out the door looking for a new home.  

I have cut back any of my Bb infoseeking and put the lists on digest only and rarely look at the conversations.   I find more positivity and healthy perspective here. And more importantly for me a whole less fear in general. 

It is a bit like universal precautions just assume you may have it and if you do you are covered.  

I can think of the time that I was more concerned about absorption through the skin of tick repellents that my concern for catching Bb.  Yet when i went to a well presented talk about Bb by an MD I had a suspicion that I could well fill the bill.   Took me a year to find a center that looked at the symptom of over whelming fatigue from multiple posibilites and after coming up positive for cpni and starting treatment of 3 weeks I had a complete infectionsi disease panel drawn.  Just enough time to oust eough of the Bb to give me a positive western blot for recurrent infection.  Iwas a bit shocked at the results.   It cost a whole lot of money and in he end you can buy a whole lot of treatment  for those bucks.  Thank goodness I only paid 20% of the $5000.00 US screening.   I agree that it is not necessary to substantiate either pathogen.  If you got most of these symptoms in one set or another you have good odds of having one or more of the pathogens that are in the group quickly becoming known as stealth bacterial infections.

Just my world view here of course but it is how I am making peace with the situation and proceeding onward.

So many amazing stories here.   They all inspired me and still do.  Next week I go to an hepato-biliary unit of a major transplant center to get my liver-GB ultrasounded and evaluated.   Why, because I want to stay on CAP without a break if there is any way around it. 

Oh, about colds, I started on yesterday morning, sore throat for about 5 minutes, runny nose for about two hours and mild, dry cough with expiratory wheeze yesterday. One incident of scant phlegm yellowish. Today no wheeze, less coughing much, no nasal congestion or runny nose, tomorrow sure seems like it will be history.   Might of picked up something standing in line in the cold (well dressed with heavy coat, hat and gloves) on Saturday. Tired spending to much time here on the computer. Perhaps it would be less today if it were not so dry 18% humidity inside and windy outside. 

So this is the shorted "cold I have ever had".   Somthing must be working ok.

Louise

CFSi/ME.CPnPositive.BbPositive.

Started6/24/07WheldonCAP.OnDoxy, Roxi, Tinii, NACi

2/3/08TiniPulse#4

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Joyce, I am sooo happy that SteveJ is making headway & you have found new doc!  That makes for such relief I know.

About the cold, I won't fight you on this, lol.  I have not really had a cold for quite a while.  THough recently I have had bouts of a sore throat & sniffles that lasted much like Louise has stated, not long.  I am encouraged by the fact my immunei system seems to have handled them.  I am pleased this could be a sign that my long time fatigued immune system may be doing what it is supposed to be.

having said that, still reacting to my baby flagyli pulses; so I suspect a ways to go on that front.  I have basically plateaued, I am pleased to report even that as it means I have made some progress.  I suspect as the flagyl pulse doseage is increased in the months to come I will round another curve.

You both are in my prayers for continued strength to work through this.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day

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

Thanks everyone for the comments and moral support.  Rica mentioned "battling...grimly"---very appropriate.  The past several months have been very grim.  Reading the recovery and progress accounts have kept us hanging on, and lately, especially, Daisy's reports have helped to move me personally from despairing back to renewed hope.  Steve, though, has been saying things like "I'm really glad your internet friends are doing so well, but I'm not."  Since he resumed the flagyli pulses, I've only allowed him a few days respite between cycles, so he hasn't had any time to speak of to feel decent and to assess a new "normal," something he can hold onto through the next pulse.

Daisy, is this what you wanted to see?

IgM Result:  positive per Igenex, negative per CDC/NYS

        18 kDa.    -

        22 kDa.    -

**23-25 kDa.    -

        28 kDa.    -

        30 kDa.    -

     **31 kDa.   +

     **34 kDa.    -

     **39 kDa.   IND

     **41 kDa.   ++

        45 kDa.    -

        58 kDa.    -

        66 kDa.    +

        73 kDa.    -

**83-93 kDa.    -

 

IgGi Result:  negative per Igenex and CDC/NYS

        18 kDa    -

        22 kDa    -

**23-25 kDa    -

        28 kDa    -

        30 kDa    +

     **31 kDa    IND

     **34 kDa    -

     **39 kDa    IND

     **41 kDa    ++

        45 kDa    -

        58 kDa    ++

        66 kDa    -

        73 kDa    -

**83-93 kDa    -

The Lyme-Literate doctor who ordered the test interpreted the results as positive for IgM and IgG.  A close friend whom I met on another MSi forum is well-informed on the testing and had these comments:

Steve is positive on IGM per Igenex because he was positive for 2 or more lyme bands.  The CDC also requires 2 or more bands but they only acknowledge (so far) certain bands as meaningful where as many in the lyme community say the CDC is missing the boat on some bands.  Based on the research I have seen and my knowledge of how the CDC operates - I would say the lyme community is probably correct.  In my humble opinion the CDC is not current on all of the bands. 

On the IGG you need to test positive for 5 bands.   Being on antibioticsii for as long as Steve already has is also significant in that it could mask some of the bands from testing positive.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  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 (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

IgMi on Western blot by CDC criteria evaluates bands 23, 39 and 41. 

CDC does not test all bands just the three above, Igenex does test for all the bands as you show us above.

I show postive IgM on bands 39 and 41. 23 was negative.  For me it was suggested that my 3+ weeks on Doxyi 400/day acted as a challenged and forced the positive result IgM result.

I believe that band 31 is very specific for Bb.

Band 41 is often positive and is non specifice as I understand it, some of the bacteria in the mouth that cause gum disease  are spirocetes from what my Lyme aquantance has told me and they have shown me at the dental office.  Funny this was long before Dx and I asked the dental hygenist if it could be lyme.  She gave no answer.   

When you test all bands you are testing bands that have been reserved for vacine trial use or something like that.   There is the story about the vaccine that was withdrawn from the market that made a number of people ill who were vacinated but actually had the disease, so this is why they decided on the reduction in bands reported.  To be more specific than that I cannot be with accuracy.

 Louise

CFSi/ME.CPnPositive.BbPositive.

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Joyce, no wonder Steve has been so down if he has had only a few days between flagyls! When I became semi-conscious the second year I did flagyl and realized that the "feel'good" time came only a day, later two, before it was time to begin the next pulse, I would literally enjoy every single minute just because it felt so good. The first year or so, there were none that I know of, which is probably how Steve feels now. I can very well remember how I felt "under the influence". He is adding a new dimension to the FLC syndrome! It took me EIGHTY DAYS to recover fully from the twenty-six day pulse last fall.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 49 pulses NC USA

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

Joyce,

I'm being treated by the lyme doc in Louisiana for both lyme and Cpni. I've brought him the materials on Cpn and MSi and he was very interested in it. It should only be a 4-5 hour drive for you to get to his office from Dallas. Send me a message if you need his information. 

 

Houston, TX. RRMSi since 12/05. Started antibioticsi 12/06.

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

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Houston, TX. RRMSi since 12/05. Started antibioticsi 12/06.

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

Steve is pulling out of his 11th post-pulse period very well.  In the past few days, his balance got worse than it's ever been, but yesterday it was better than it's been in a very long time.  Today it seems even better!  In the past few days, he has also been using Questran and a "magic potion" to mop-up Lyme neurotoxins, however, it was time for him to improve in his pulse cycle.  No way to tell if the helpers actually had a hand in the improvement.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  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 (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce - Really glad to hear Steve is experiencing better days - no matter how he gets them!!!!!!!!!!!!!!!!  Cheers to a good stretch in the road!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/07.  Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxyi, Azith

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

Excellent news! I am glad he is feeling a bit better. Cheers along with Daisy - to good stretches after a lot of work! On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 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 since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

MacK, I think you have hit on something there! As a child, I remember having an occasional cold, which would pass in a day or two--no big deal. I noticed that my colds took on a lingering/fatiguing quality in my middle school years. Chronic infection has been with me a long time. -kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; EDSSi was 6.5, now 5.5.  United States.

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.