Article on stem cell use for advanced chronic Lyme

[TischSEB]

Hi – ran across this – the only relevant part is that a chronic Lyme patient is mentioned…
http://www.globalpost.com/dispatch/india/091009/unfettered-regulation-india-pulls-ahead-stem-cell-treatments

[Maz]

Tisch, thanks for sharing this very interesting article! 🙂 Dr. S.H. mentioned in the article is a Lyme Literate physician in CA and his father own the IGeneX testing labs out there. I was very interested to hear his remarks about his patient's seemingly miraculous recovery.

The interesting thing about stem cell is that it's clearly fortifying a compromised body's recovery, but I have to wonder if the underlying infections will ever prove to be a problem later down the road? I guess we won't know the answers to these questions in the near future and will really depend on the long-range results of those patients who receive the therapy.

Nice find!

Peace, Maz 

[Parisa]

There was a thread about this on Lymenet.  Amy replied to many of the questions if anyone wants more info.

[Michele]

Fascinating article. Thanks for posting it!

I was just pondering today when science would leap forward, find, and acknowledge a better way of treating diseases. I am very glad to see this.
Parisa, could you post the link to that article? I'm not finding it at lymenet. Thanks!

Michele

[Parisa]

Here is her blog:

http://www.amybscher.com/Site/Home.html

 

I'm not pulling up the original thread on Lymenet.  Maybe it got pulled (too bad if it did)

[TischSEB]

Hi Maz,
Tks for your reply! Yes, this is not the first time I have heard about a stem cell treatment (or some variation) being used for autoimmune conditions, and I have the same thought. Is some by-product or side benefit of the treatment actually having an impact on an underlying infection? It seems awfully round-about. There seems to be a lot out there on the net about using it for scleroderma.

Here is a blog of a woman with polymyositis who used chemo to destroy her existing immune system, and then her stem cells regenerated a new one.
It appears to have been pretty successful, but the same questions apply…

From the blog:
“This is a chemotherapy whereby the drug eliminates your entire immune system but leaves stem cells in your bone marrow and blood intact. Stem cells are apparently resistant to cyclophosphamide due to an enzyme that breaks the drug down before it can destroy the cell. These stem cells eventually (beginning about 7 days or so after treatment) “reboot” your immune system. The “new” immune system will hopefully forget that it used to think Jen's muscles were an enemy.”
The full blog is at http://rebootingjenny.blogspot.com/search?updated-min=2008-01-01T00%3A00%3A00-05%3A00&updated-max=2009-01-01T00%3A00%3A00-05%3A00&max-results=45

Its possible someone on this board has posted this before – its in my bookmarks but I'm not sure how I ran across it the first time…

Tisch

[TischSEB]

Hi Parisia,

How are you and your husband doing? We have been on AP for about 2 months now. In that time we have had lowering CPKs (2 results so far -hoping it is not a fluke!) , and a positive test for Mycoplasma pneumoniae. By far the greatest difficulty has been anxiety. I took SEB for acupuncture for some back pain and anxiety. Wouldn't you know it he had an anxiety attack during the session!
Currently he is going through a phase where he feels like he is getting worse (weakening). I am hoping it is a herx – we went to every other day on the dose until he feels better.

Hope all is well with you.

Tisch

[TischSEB]

Hi Michelle,

You are welcome. I am glad it is useful/interesting.

Tisch

[Parisa]

Tisch,

My husband is doing very well.  This month marks four years since my husband first became sick.  His first year of illness was spent on getting a diagnosis and treating with the wrong treatments (including Cytoxan).  His second year of illness we discovered that Lyme disease and Babesia (a co-infection) were playing a big role in his illness and he started on an oral Lyme/Babesia protocol.  Unfortunately, orals weren't strong enough for him and we switched to IVs.  Also, around the same time an EMG came back positive for myositis which given his failure on Cytoxan and prednisone enabled my husband to qualify for IVIG.  The IVIG and IV antibiotics have been a godsend.  The antibiotics my husband had the strongest response to were IV Flagyl and malarone.  IV zithromax was also important as my husband had serious issues with pulmonary fibrosis. 

My husband is at about 90% now.  He works a full day and still has energy to do things after work.  We actually painted our kitchen and family room last weekend – a major milestone.  The stabbing pains are gone.  The aching pains are gone.  Muscle strength is almost normal – although he hasn't regained all of the muscle he lost in his shoulders and hip girdle area.  He has regained about 30 lbs.

I know there are people with myositis who have responded to the low dose approach of AP so I don't mean to scare you off with my husband's more aggressive protocol.  However, it's good to keep in mind any parallels when it comes to similar symptoms and keep protocols that have worked for others in your back pocket. 

Mycoplasma can be spread by ticks as well as through the respiratory route.  If the mycoplasma was contracted by a tick, there is a good possibility of Lyme, babesia and bartonella.  Babesia is a protozoal infection and will not respond to your typical antibiotics but requires anti-malarials.  My husband was tested for Babesia but came back negative.  However, the testing for Babesia doesn't catch all of the strains and my husband had many of the classic symptoms: night sweats, chest wall pain, muscle pain, anxiety etc. that he received a clinical diagnosis.  Response to the anti-malarials confirmed it for us. 

When I heard of AP I knew it was going to be the route that would get my husband better.  It wasn't easy in the beginning and it was hard to watch other posters (with other diagnoses though) start to improve while my husband languished.  We pushed through and kept searching and switching things around until we found something that would work. 

Tisch, regarding the stem cell therapy where they used chemo:  I followed a blog for about a year last year written by a young woman whose husband had scleroderma and was on a waiting list for stem cell therapy.    I'm sorry to say it didn't work for him and he died about 8 months later.  I believe Amy Scher's stem cell therapy was different in that they don't use chemo to destroy the immune system.

[TischSEB]

Hi Parisia,

Thanks for writing. I have been collecting “Plan B/Next step info and will include the things you have tried as possibilities. Except for this board, I don't know where else I would find this kind of detailed and relevant info. I am so glad to hear of your husband's successful healing. It is really inspiring. You mentioned that the myositis was not diagnosed until the second year (by the EMG). Did he have the muscle weakness from the beginning or did that develop after other symptoms? SEB's first symptom was a feeling of weakness in his left leg. That went on for about a month and then the weakness rapidly progressed to the three other proximal limbs after he spent 5 days in the hospital for an atrial fibrillation (he had no prior heart problems).
Also, perhaps this is a bigger question for the board, but did you ever feel that since this ended up being infectious, that you were at risk of contracting something similar? I have heard/read that Lyme can be passed from mothers to children and between partners. We are exhausting the goodwill of family members as it is, so I can't even imagine a scenario where both of us are ill. Pardon the paranoia…:)

Tisch

[Parisa]

Tisch,

My husband had some muscle weakness at the beginning of his illness however it became very pronounced about a 8 months in when he did hyperbaric treatments.  The oxygen rich environment and caused the untreated babesia to take off like a wildfire. 

[Author]

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