I have a question that requires the minds of all of those who have cared for patients with MS and with Lyme. Have been treated with HBO for lyme. Or been misdiagnosed with MS and have lyme.

This is regarding a patient that is being treated holistically for MS. But has an equivocal lyme titer.

I has been my albiet limited, experience as an HBO nurse that patients with MS respond to HBO (hyperbaric oxygen therapy) with a gradual improvement in symptoms until they reach at least an improved quality of life. Not a cure but improved.

Patients with a Dx of Lyme tend to have setbacks in their symptoms temporarily due to the Herx reaction then the gradually improvement with HBO therapy.

What would you think a person has, if he has a Dx of MS and his reaction to HBO was a gradual worsening of symptoms? In other words
increased weakness to the left side. Which subsides after having ending HBO therapy, has an equivocal lyme titer (Igenex)a negative C6 peptide, positive Chlamydia, And a history of 20 dives at 2.2 ATA and one at 1.5 ATA. (Atmospheres - HBO lingo)

His only symptom is left sided weakness (-)fever (-)rashes (-) joint pains,history of a very healthy lifestyle. Which includes weight training and a 3-5 mile run at least three times a week for over twenty years.

I know that this is a difficult question but any opinions will be greatly appreciated.
Thank you all in advance for your imput and your patience.

I realize that this is a lyme site however I am hoping to find anyone with similar experience that have then been diagnosed as lyme and not MS.

Best Regards,

What DID work, however, and it worked to the point of being a miracle for us, was ozone steam therapy.

A year later, and she's back in school, completed her junior year, went to summer school, just came back from 2 parent-free weeks in NYC, has a boyfriend, and life is quite good. And she's been OFF abx for a year!

orion

I did HBOT for MS in April/05-- right before I learned I have Lyme. HBOT made me A LOT worse. My left-sided weakness was extreme.

My symptoms got worse and they're still not good. I have not recovered yet. I am too scared to go back and get HBOT for Lyme.

So, based on my experience, HBOT may work better for MS than Lyme. I don't know. It's helped others with Lyme...just not me.

It might be helpful to post his Western Blot results??

The established protocol for Lyme HBO treatment was developed by Dr. William Fife, a hyperbaric medicine specialist at Texas A & M University.

The protocol calls for therapy at 2.36 ATA (Atmosphere Absolutes) for one hour, twice daily, to be continued for 5 days a week.

The nurse at the time told us that the only patients who got worse with HBOT initially and then improved with continued treatment were Lyme patients -- unfortunately it was 11 months later before we got Lyme diagnosis -- what a waste of time for hubby with no diagnosis and no treatment.

Julia and SAK,

You might like to read a recent post I made regarding "Claw Hand". Marnie posted something there regarding one-sided weakness -- I am still trying to put the pieces together regarding hubby but info might be relevant for 1 or both of you.
http://flash.lymenet.org/ubb/Forum1/HTML/036867.html

Hi Orion,

I have heard that HBO works better for some then for others. I believe that it works best on the neurological aspects of lyme. It has worked very well for me.

Hi Saks

I have sent you an email with several questions regarding your symptoms. I am most interested in knowing if you had any other manifestations of lyme.

This person has no other symptom except leftsided weakness. Has also had worsening of symptoms and to the best of my knowledge has not improved.

It is my experience with lyme and HBO that there is a worsening of symptoms. In MS patients the symptoms go straight to improvement without sent backs.

Can you tell me how you where Dx? I would greatly appreciate your help now that you may have the same clinical presentation.

Thank you kara

I do have the protocol and also believe in Dr Fife's protocol : ). However (IMHO) HBO is better tolerated on a once a day basis for lymies. Especially for chronic lymies who can Herx very abruptly.

Thank you Bea,

I agree with the HBO nurse that treated your husband. That is on of the reasons I am on this search. I have an individual who responded the very same way.

Thank you all very much for your help,

Julia

I have had very good experience with HBO myself and have gone as far as to get my own chamber. It has been my experience that lymies do herx right away. In fact seem to experience all of the symptoms that the lyme has caused them over the years. In one of my cases all of them at once!!(He really scared the poop out of me) But if you stick with it the benefits are great.

However the cost is more than I believe is reasonable for most lymies to afford. I have heard good things about the mild chambers as an alternative as well.

I am trying to find anyone that has only had weakness as an obvious manifestation. Or with a Dx of MS that has used HBO to treat it. I have posted in other sites as well and hope that someone will get back to me with a similar response.

Thanks again for the response,

regards,

Julia