Could you give me advice?

edi · Post by **edi** » Fri Aug 07, 2009 11:52 pm

Hallo friends!
I come from Poland. And I would like to describe my friend story (33 year old female).
She started to have ongoing weird neurological symptoms in 2007 and then She was diagnosed as RRMS (many lesions in RMI).
She had 7 big relapses during first one and half year (twice optic neuritis with nystagmus , losing balance, drooping food, weakness and loss of sensation and co-ordination in hand, and of course numbness, tingling, dizziness, stiffness in legs etc.) , each time she took pulses iv steroids in large doses.

Because the progression of disease was so fast, we started to read everything about alternative methods of treatment.
Finally we made tests for Borrelia burgdorferi and coinfections.
The results:
PCR from cerebral fluid: Borrelia b. +;
PCR from bloot: Bartonella henselae +;
Some serological test for Cpn: IgA+ , IgG+; Yersinia +;
Western blot: Borrelia b.: 6 pt. +/-

We started with the first antibiotic over ten months ago.
First 1,5 month: ceftriaxone iv 2g/day, last 2 weeks puls tyni 1g/day.
Next 4 months : doxy form 200mg/day to 400mg/day; rifampicin from 300mg/day to 600mg/day; every month 10 days puls tyni 1g/day.
Next 2 months : doxy 400mg/day; tyni 1g every second day
Next 3 month: doxy 400mg/day; roxithromycin 300mg/day; every month 10 days puls tyni 1g/day.

Since 1,5 year she takes betaferon1B every second day (and still alive;)).

Now we consider to take 400mg doxy/day and 500mg azithromycin every second day and puls tyni 10 day/month.

Current symptoms: tingling, hypersensitive skin, week legs, after 5km walk., sometimes problems with balance. In spite of it the regression of symptoms is significant. No relapse during last 10 months and slowly recovering. Maybe there ware some JH reactions, but not very strong.

The question is, what she should do now? Her MD has not any big experiences in CAP. She want to finish the abax after full year CAP, because she would like to enlarge her family :).
What do you think about SM diagnosis in the context of serological and PCR tests?
What do you think about our antibiotic combination?
PS, sorry for my poor English.

SarahLonglands · Post by **SarahLonglands** » Sat Aug 08, 2009 6:14 am

Hello Edi, your antibiotic combination sounds fine, but doubling the dose in the expectation of finishing sooner won't work: just stick at your current dose. If your friend wants to stop after a full year, if she becomes pregnant that often stops any attacks due to protection of the unborn child. She can always start again after finishing breast feeding.

Sarah

edi · Post by **edi** » Sat Aug 08, 2009 10:21 pm

Thx Sarah for your answer.
Do you thing that one year of CAP is too little?
What determines the end of continuous therapy? When to apply the intermittent therapy?
Can you tell me something about the effect of long abax treatment on pregnancy and child?
How long should the interval between the end of therapy and become pregnant?
Thank you very much for your help. Highly appreciate what you are doing.
Edi.

SarahLonglands · Post by **SarahLonglands** » Sun Aug 09, 2009 3:40 am

The Vanderbilt regime works on four or five years, but I changed to intermittent after a year. It depends on the improvement of your symptoms at that time. As I said above, very few people relapse during pregnancy, but may do afterwards, so you would be wise to at least do intermittent afterwards.

Prior long term ax treatment has no effect on the child and I know some people have just stopped as soon as they knew they were pregnant. That's all I know.

Sarah

edi · Post by **edi** » Sun Aug 09, 2009 6:34 am

Thank you Sarah. I found your husbands web site the same day when neurologist suggested MS.
The final diagnose was 6 months later (after following relapses and MRI). Next 10 months we needed to convince themselves to CAP.
Today I guess that it was the best solution for us. Thank you and your husband for this amazing work.
Now I thing that it will be quite well to take doxy 400mg/day + azitro 500mg every second day + tyni 1000mg two weeks / month.( And betaferon every second day.)
I hope that everything goes well. Last 5 weeks we have problems with legs but yesterday we walking 3 hours in the mountains (circa 10km).

notasperfectasyou · Post by **notasperfectasyou** » Sun Aug 09, 2009 6:00 pm

You might want to find out which supplements are both helpful in pregnancy and in fighting CPn. It would be good to know if you can take NAC or D3 while pregnant. Ken

edi · Post by **edi** » Mon Aug 10, 2009 1:07 am

I wonder, what do you thing, about changing the second abax every there/four months.
The first is always doxy (400mg), the second rif or roxy or azitro.
Whether these changes can have a positive ( or not )effect?

SarahLonglands · Post by **SarahLonglands** » Mon Aug 10, 2009 2:48 am

Edi, I stated with doxycycline then added roxithromycin two or three weeks later. After six months I changed the doxy for rifampicin which I took for the next six months. It is a very powerful drug but can't be taken intermittently: if you keep stopping and starting it, resistance develops very quickly.

Vitamin D you can certainly take during pregnancy. I'm not sure about NAC but since it also guards against 'flu and other viral infections as well as well as bacterial ones, it seems like a good idea. I will try to find out.

Sarah

radeck · Post by **radeck** » Sat Aug 29, 2009 4:21 pm

Hi All, what does Cpn stand for?

SarahLonglands · Post by **SarahLonglands** » Sun Aug 30, 2009 5:37 am

Chlamydophila or formerly chlamydia pneumoniae: most people have come into contact with it, but luckily few people have the genetic predisposition to develop MS, but it can also cause heart trouble and lots of other things.

Read this: http://www.davidwheldon.co.uk/ms-treatment.html

Sarah

edi · Post by **edi** » Mon Aug 31, 2009 10:48 pm

I have question too. What does CRAB ;)stand for?

Post by **NHE** » Mon Aug 31, 2009 11:10 pm

edi wrote:I have question too. What does CRAB ;)stand for?

Copaxone Rebif Avonex Betaseron

edi · Post by **edi** » Tue Sep 01, 2009 12:40 am

thx NHE.
nice abbreviation ;)

Shaka · Post by **Shaka** » Wed Sep 02, 2009 7:59 pm

I was treated for Lyme Disease after being diagnosed with MS. I got much better after 90 days of IV Rocephen. We got Pregnant 6 months later and were instructed to take 1500mg of amoxicillin during pregnancy and breastfeeding to protect the baby from getting Lyme. She did test negative at Birth and is so far a Happy and healthy One year old.

I did not discover I had CPN until I was done breastfeeding and stopped all antibiotics and my MS came back worse than before. I am now on the Stratton Vandebelt Protocol for about a month now.

If she tested positive for Lyme make sure she knows the risks of passing that to the fetus during pregnancy or through breastmilk. There is not alot of good research we could ever find on the subject.

I hope her recovery continues and she has the chance for a new baby. Our little girl brings us so much joy. I just wish I would have continued antibiotics much longer and maybe it wouldn't have come back so strong after the baby. I heard relapses are very common after Birth. And it sure hit me hard.

edi · Post by **edi** » Thu Sep 03, 2009 3:26 am

thank you Shaka for your post.
Month ago she did a test for bb (Western Blot and PCRrt ) and and both were negative.