Recent Diagnosis of CIS - going down hookworm route with AIT

Tell us what you are using to treat your MS-- and how you are doing.

Postby Lyon » Sat Jun 04, 2011 7:37 am

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Last edited by Lyon on Thu Jun 23, 2011 4:21 pm, edited 1 time in total.
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Postby mrbarlow » Sat Jun 04, 2011 9:45 am

Quite

My approach from very early on was to hit the problem with everything on offer. So I take the Interferon, I have significantly modified my diet, take a shed load of supplements, and of course the worms.

6 months ago I had a blurry left eye, fatigue which meant 10-12 hours sleep minimum to be able to cope with work, cognitive problems, and periodic cramps.

Things are far better now but yes the question is why? I suspect a combo of all approaches Im taking so Im not fiddling with what appears, at for the time being to work. If I can keep in my current job for the next 10 years I will be able to comfortably retire around my 49th birthday. Once my aim was to sail around the world at 50 - now its to be on two feet unassisted :?
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Postby Lyon » Sat Jun 04, 2011 11:05 am

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Postby mrbarlow » Sat Jun 04, 2011 11:23 am

7 months in I think Im doing well. Far better than at diagnosis. On the other hand I have a nagging feeling that Im kidding myself and this is just the calm before the storm.

I had the MRI in November. Neuro hasn't said when next will be.

From a clinical perspective I am fine, no disability and only a few minor niggling symptoms. Hope to keep it that way.
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Postby HelminthicTherapy » Tue Jun 07, 2011 2:37 pm

mrbarlow, how many hookworms do you have? Did you get treated by AIT or Garin? Have you ever had an egg count to make sure that your hookworms are alive? Are you considering adding more hookworms?
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Postby mrbarlow » Wed Jun 08, 2011 7:08 am

HelminthicTherapy wrote:mrbarlow, how many hookworms do you have? Did you get treated by AIT or Garin? Have you ever had an egg count to make sure that your hookworms are alive? Are you considering adding more hookworms?



35 HW plus whipworm eggs (cant remember the number). It was with AIT

I am thinking about an egg count test in September and then a top up either then or spring 2012.
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Postby HelminthicTherapy » Wed Jun 08, 2011 7:14 am

If I were you, I'd get a microscope and try to do McMaster egg counts once a month. Did you experience any side effects from hookworms? If not, you should get 35 more.

mrbarlow wrote:
HelminthicTherapy wrote:mrbarlow, how many hookworms do you have? Did you get treated by AIT or Garin? Have you ever had an egg count to make sure that your hookworms are alive? Are you considering adding more hookworms?



35 HW plus whipworm eggs (cant remember the number). It was with AIT

I am thinking about an egg count test in September and then a top up either then or spring 2012.
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Postby mrbarlow » Wed Jun 08, 2011 9:11 am

Hi

Only transient side effects.

Rash on the arm, cough3-5 days post infection, mild nausea in 3rd-4th week
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby mrbarlow » Wed Sep 28, 2011 12:18 pm

Update.

2nd inoculation on the 20th September. Similar experience as before. The patch was applied to my forearm and an intense itching started after about 10 minutes. 8 days on I still have 17 distinct 'spots' where the patch was. Itching a bit although manageable.

2-5 days had a mild productive cough as the larvae transit via the lungs

Have also been off rebif for 8 days. Feel ok but have a fair amount of buzzing in the feet (which are also hot) and occasional pulses in the body and arms which are about my only symptom at present.
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby Apuman » Thu Oct 13, 2011 1:19 pm

When you recieved your last dose, can I ask how by what method they were shipped, and how long they took to arrive?
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby mrbarlow » Thu Oct 13, 2011 2:00 pm

The 20th September. I had arranged it with Michelle Dellerba about 4 weeks previous.

They were sent to me in the UK whilst I was on holiday.
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby mrbarlow » Fri Nov 18, 2011 5:53 am

This post is comes on my one year aniversary of being diagnosed following a bout of Optic Neuritis. Having adopted a Wahls orientated diet, got on Hookworms in February 11, and taken the rebif I am generally healthier than I have been for 5 years.

My ON neuritis flares a little if Im tired. I get a little tingling in my hands and feet and some itch on the body. Its all usually when Im stressed, hot or tired. I am putting this down to senstive nerves following their previous demylination. Fatigue issues are now largely resolved and 6-8km hikes in 40 degree heat no major challenge.

Fingers crossed and good luck to everyone else.
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby jimmylegs » Fri Nov 18, 2011 7:22 am

hey mrb, glad to hear you are feeling better. question: did you ever take some zinc and/or have your serum zinc level tested? with ON i'd go there first. good for you re diet modifications :) caveats: if you're not eating zinc-rich foods such as red meat you might still end up with lower zinc. although the low grains will help you retain zinc, high phytate foods like certain greens can interfere with absorption.
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby mrbarlow » Fri Nov 18, 2011 7:47 am

Hi JL

I eat some red meat - probably about one steak a week on average. Was back in UK last week so ate quite a lot of pork.

Supplements - Whats in the MV (15mg) plus 15mg at other end of the day.

Im going to try and get a load of (free) bloodwork done before I feck off out of the Magical Kingdom. I reckon Vit D, B12, Uric Acid, Mg, Zinc, & Eosinophil count. What do you reckon - any worthy additions?. Dont want to push my luck :mrgreen:
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Re: Recent Diagnosis of CIS - going down hookworm route with

Postby jimmylegs » Fri Nov 18, 2011 5:02 pm

a steak a week is good and 30mg supplemental zinc sounds decent too.

definitely go for the free bloodwork! vit d (make sure you order 25(OH)D3 of course), b12, UA, Mg, and Zn all sound good.

hope the numbers come back good!
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