Cowden Protocol

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kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 2/25/2009 10:14 AM (GMT -6)   
I am supposed to start long term low dose IV antibiotics and am concerned because I have not tolerated at all the previous treatments that I've had. I was reading about this protocol and am wondering who has had success using this and whether they've used it with antibiotics or not. Also, have you done it under the supervision of your lyme doctor or on your own.

I'm currently under the care of 2 lyme doctors and have continually asked about toxicity in my body and don't feel it has been properly addressed. I am ready to start this on my own. Any advice/suggestions would be much appreciated.

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/2/2009 1:52 PM (GMT -6)   

Hi!  My sister has been on antibiotics intermittently over the past 4 1/2 years (PICC line with IV Rocephin for 10 months).  Ironically, the worst time was during the PICC period, just because of the life altering committment to "pulsing" 5 days a week for 1 hour a day!  However, it's the best she felt physically since this nightmare started.  The Cowden Protocol did nothing for her!!  And, it's very, very expensive.  Maybe it's helped others less sick than my sister, but I truly don't know of anyone raving about that specific treatment.  I've watched first hand to see how very hard oral antibiotics have been on her gut, and we've found out how crucial it is to take mega doses of probiotics while she's taking orals.  Sadly, she's not improved in 3 years - in fact, she's worse!  Her legs basically don't work anymore and it's a battle just to get the energy to get out of bed.  I will say, that many of her other Lyme symptoms have improved, like the constant pain, tingling, burning sensations, etc. she was plagued with in the beginning.  Those are basically gone except every once in a while her legs will ache enough to keep her from sleeping.  I don't know where to go from here.  She's back full time on antiobiotics - Biaxcin and Plaquenil - but she still suffers from extreme muscle weakness in her legs and debilitating fatigue.

Sometimes I wonder if we should just start all over with a neurologist and begin treatment for MS!  I'm so scare because I'm now questioning whether she really had MS or Lyme?  She did have a postive Lyme test from Igenex in 2004.  Now I hear rumors that no one gets a negative test from Igenex!  I'm so confused and panicky, because I just can't sit by and watch my sister slip away.  If any one has any suggestions or advice for treatments that could improve her stamina and muscle weakness, I'm open!  At this point exercise isn't an option - she can barely walk down 3 steps without collapsing!

My prayers are with everyone who suffers from this horrible disease!  Take care!


kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 3/2/2009 5:12 PM (GMT -6)   
Hello Shadowmom,

I would definitely see a neurologist. My symptoms are neurological so that is where I started. Testing brought back negative results (MRI brain, lower back, EMG), ended up 8 months later being tested through another MD for lyme through IGenex with positive results. Got to a lyme specialist and have had a lot of difficulty on the various treatments. In January I went to another lyme specialist and back to neurologist for another round of testing MRI, spinal tap. My neurologist feels definitely that I don't have a neurological disease and that the primary source is another disease but she is not saying it is lyme. She wants me to go to another neurologist at UCSF for another opinion. I am scared, feel crappy and am getting tired of going to doctors. However, I too have continually questioned my diagnosis throughout this whole thing. My uncle whose an internist has said the same thing about Igenex (never seen a negative result through them). However, they have to go through licensing checks to stay in business. My current lyme doctor is not treating me with anything right now -except lyrica and a few supplements to try and calm my system down. She then wants me to start the line of 3 drugs, low dose for 5 months. Of course there is never a guarantee. You are right this is a nightmare.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 3/2/2009 6:16 PM (GMT -6)   
I had a negative Igenex result. Completely negative, save a faint + 41 band, which is really nothing.

Just want to clear up the comment "My uncle whose an internist has said the same thing about Igenex (never seen a negative result through them). "

Otherwise, I agree about pursuing alternate or additional diagnoses.
 


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 3/2/2009 6:38 PM (GMT -6)   
I am a physician and have seen many negative Igenex results. I think it is the best lab to test and if it positve I believe it, If negative it could still be Lyme as antibody response is so variable with this illness.

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/3/2009 12:51 PM (GMT -6)   

Thank you all for your feedback!

 

pcpc:  Thank you so very much for clearing up the rumors I had heard regarding Igenex!  You'll never know the relief I felt - especially hearing a physician state that Igenex does produce negative lab results!  In 2004, my sister's lab work came back "positive" or "reactive" to just about every band.  Her doctor's response was "screaming Lyme disease".  However, because she is actually worse than she was 4 years ago, I began to doubt our decision to pursue Lyme versus MS.  She did have a spinal tap and MRI done that same year that showed one small white lesion - which is why the neurologist she was seeing at that time suggested she "may possibily have MS", and we needed to pursue treatment for MS.  Two years previous (2002), her primary physician had ordered the standard CDC lyme test and it was "negative".  They all discounted her increasing symptoms over the past 10 years and told her it was "all in her head" and that she needed a vacation!  How sad!

After having a PICC line for 10 months, and 3 years of on-again, off-again oral antibiotics, along with a host of holistic tinctures, vitamins, minerals, etc., I cannot wrap my head around the fact that she's actually worse! The muscle weakness in her legs and debilitating whole body fatigue are the last remaining symptoms.  Sadly, they are the most life altering, but at least many of the other, smaller less debilitating symptoms seem to be gone.  I don't know where to turn - I've even been doing extensive research on the Sea Salt/Vit. C protocol - but I'm really scared.  Her lyme physician does not believe in that protocol.  WEll, any advice you can offer would be greatly appreciated.  God bless!


beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 3/3/2009 4:21 PM (GMT -6)   
Shadowmom-is your sister being treated for Babesia-my leg weakness and fatigue diminished greatly with malarone!

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/4/2009 3:12 PM (GMT -6)   

Hi, Beths.

Yes, I believe she was treated some time in 2005 or 2006.  The only thing I can remember and going back through my notes is that she had a horrible time tolerating Mepron and artemisia (sp).  In fact, we became so concerned that we placed a call into her LLMD in the middle of the night - after hearing about her condition, the LLMD suggested we halt the treatment.  If I recall, my sister wasn't on this combo long - maybe 1 month??

Recently, I've begun wondering if we might be dealing with Babs, so I was jolted when you suggested it - you know what they say about "great minds" running in the same path!!

Thanks so much for the suggestion and for caring enough to respond.  Probably the only positive thing I can say about this whole 4 1/2 year nightmare, is that it has afforded me the opportunity to "meet" some incredibly kind, caring, informed, and compassionate people!  Kind of renewed my faith in mankind!  thanks again and God bless!


beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 3/4/2009 3:51 PM (GMT -6)   
The reason I mentioned babesia is because I had muscle weakness and fatigue from babesia-horrible herx's. I don't think 1 month of mepron would do it-although it almost killed me!
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