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minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 7/2/2009 11:17 AM (GMT -6)   
Went to LLMD yesterday and I am off Cowden as it appears to have not worked. He wants me to go back on IV but of course insurance won't pay for it so that's out.

I am still on Rifampin and stopped Minocycline to go back on Zithromycin. I am feeling so defeated after 2 1/2 years on antibiotics with no end in sight. I shouldn't complain because they have helped me alot however, I was hoping to go on herbals and stop meds soon. I guess that is not meant to be right now.

It is amazing how one can feel pretty good one day and simply crash the next with this disease. That seems to happen alot for me. LLMD said he thought the co-infections are responsible for the way I am feeling now--Bart, Babs, micoplasma. I continue to treat everything.

For the past few days I have had the stabbing pains in my head come back after being gone for over a year. LLMD also added resveratral (derived from red wine) anyone hear of this use for this suppliment? He said it might help reset metabolism of 30 lb weight gain this year. I was never this big in my life. I am feeling pretty discouraged today thanks for listening.Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/2/2009 11:23 AM (GMT -6)   
Hi Minerals, I'm so sorry Cowden didn't work for you. It's so disappointing when a treatment we have high hopes for doesn't work.

I'm curious why you can't continue with Mino while adding Zythro. Right now I'm on Mino, Zythro, Mepron and IV's. Maybe I'm just lucky that I can handle so much - for the time being anyway.

Anyway, I hope this time around does the trick for you.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/2/2009 11:25 AM (GMT -6)   
Thanks Scorpio, He took me off mino because I have been on it since September and he said he wanted to switch things around. He thought Rifanpin and Zithro was a good combo to try. Who knows...............
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/2/2009 11:27 AM (GMT -6)   
Good luck.

I'm wondering at what point my meds will be switched. I'm sure the time is coming soon. lol

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 12:01 PM (GMT -6)   
i'm so sorry your treatment didnt work out for you. i hope the new changes will do better.

it is so sad we get our hopes up, just to have them dashed on us.

praying your better soon :)
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 7/2/2009 12:45 PM (GMT -6)   
Minerals- are you on rifampin and zithro for Lyme and Bart? I have been on abx for almost 3 years with not too much success. I was hoping to try the herbals at some point but I don't think I am even close. Not even sure about my diagnosis anymore....
I think we go to the same LLMD.
 
I was on mino and rifampin too but he wants me to switch to rifampin and zithro now.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/2/2009 2:28 PM (GMT -6)   
KTP812, Do you go to Dr. H in Hyde Park? If so where do you live and do you want to compare notes? My email is in my profile.

Yes I am on Rifampin and zithro for bard and Lyme. Actually Rifampin has helped me get rid of a few very bad symptoms that lingered even after My 4 month IV last year. And Zithro took away the pain in my feet before I stopped it last August. As I said in my previous post he wants me to go back on IV or at least take Bacillin shots but insurance wont cover it. I already had to pay for most of my IV treatment and you know how expensive Dr. H is. And I am not at all looking forward to Bacillin shots as I have heard how painful they can be. I am soooooooooooooooo tired of pain!

Anyway I think it is all a crap-shoot as to what will work with these illnesses. As everyone responds differently to meds even the LLMD's don't really know what will work. We can thank the NO RESEARCH ON LYME DISEASE for that.

However if I look back to 4 years ago when I was dragging my entire left side among many other debilitating symptoms, I have come a long way. It is just discouraging to think that it might take a lifetime of antibiotics to simply be able to function. Believe me I have tried almost every supplament that was prescribed by homeopaths, and Doctors etc to no avail. It seems that only antibiotics work at this stage of my illness.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 7/2/2009 3:19 PM (GMT -6)   
I think I will email you..I do go to Dr. H in Hyde Park but I usually see John the PA. Haven't had much contact with them in the past few months as my doctor here is managing my abx at the moment. I live in NH.

beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 7/2/2009 7:10 PM (GMT -6)   
Resveratrol also is a supplement used for bart

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/2/2009 7:22 PM (GMT -6)   
Hey Minerals, I was rereading some of the posts again and wanted to let you know that Infuserve in Florida sells iv meds for much less than most places. It's still expensive but nowhere near what I was quoted from other places. The customer service is fantastic and if I remember correctly I think they quoted me $265.00 per week for Rocephin. Good luck.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/2/2009 8:17 PM (GMT -6)   

Hi minerals.  I am sorry the Cowden protocol did not work for you at this time.  It may be effective for you later.

Co-infections can definitely make symptoms worse and complicate treatment.  You may want to check with the IV drug and IM Bicillin manufacturers to see if they have a patient assistance program for people who are uninsured or whose insurance will not cover the meds.  I know many oral med manufacturers do.  It is so frustrating when insurance won't pay for the meds you need.  You may want to research who the CEO of your insurance company is and write a letter to her/him.  State your case calmly and tell them your doctor has deemed this treatment medically necessary.  End the letter with "Can you help?"  I would be surprised if you did not get an answer.

I take Resveratrol also.  After seeing your post, I realize that I have missed taking it for some time!

Regarding your thyroid treatment, are you sure it is optimal?  If it is not, this can cause weight gain and other symptoms.   It took a long time for me to find a doctor to work with me on this.   Have you had your adrenal and other hormone levels tested recently?  Lyme can affect all of these levels.

Hang in there okay?  You are doing everything you can, and you have an excellent doctor.  I hope things improve for you soon.  Please keep us posted on how you are doing.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 7/3/2009 6:32 PM (GMT -6)   
Minerals, You have relapsed but don't feel discouraged as it sounds like Cowden got you into remission, albeit not as long or permanent as you would have liked. Hopefully you are acting quickly so that your infectious count is not too high and you can again start to feel better soon. I have used Cowden with long remissions and either relapsed or got rebit but I still use combinations- which I think is key ie mix up herbs, antibiotics, antioxidants (reservatrol is one), and antibiotics. It is a long complicated dance and can be so discouraging I know.

What were your first symptoms of relapse- was there diarrhea? That can be the first sign or relapsing Lyme. And often is you get an early sign of relapse if you restart antibiotics quickly you can get yourself back into remission quickly.

I do think Bart is difficult to treat but I think you can get rid of it with combination therapy.......good luck, try to stay positive and there may be a role for continued Cowden or a return to Cowden......

I am curious was your CD57 count low? How long were you symptom-free on antibiotics before you stopped them? What can you/we learn from what happened to prevent relapses in the future.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/6/2009 8:31 AM (GMT -6)   
Ticker Thanks for the information as always. I will check again on the thyroid. My last test only a few months ago showed I was only a little low with a fasting blood sample where I was off meds for a day. It is so hard to know what is causing what. Did you gain weight before you got your meds right? I was also wondering about the thyroid and mentioned it to Dr. but I guess he forgot about it with all of the other issues he had to hear from me. As far as bicillin shots... I had a few that were very painful and felt that I didn't need more pain..I paid for the shots myself as insurance wouldn't budge I don't think they made a difference however I didn't have many at all. Maybe I will get the courage to do that again and try to appeal to them again when I switch insurances in September.

pcpc, To answer your questions---Perhaps Cowden helped a little, especially with the sweating--but not sure now.... After symptoms came back I quickly went back on Rifampin and now llmd added zithro took me off mino as I had good results with that last year. Yes this has sure been a long complicated dance one that I am quickly getting weary of but I know I must plug away in order to function at all.

My first symptoms of relapse were the shooting stabbing pains in the head (which left me over a year ago) along with extreme headache and fibro symptoms of the shoulder and neck / back of the head pain, then the feet/ ankles and hand pain quickly followed along with ear ringing that also had gotten better in the past year. Within a few days of resuming oral antibiotics that all began to get much better.

I never have gotten diarrhea--my digestive system is about the only thing that has not been very affected by all of this (thank goodness).I attribute that to the 3 expensive probiotics I take- one of them is designed to specifically prevent diarrhea and c-diff.

I hope that when I switch my insurance in September that I can appeal to them for some coverage to go back on the PICC and use the medicine you recommended for bart--how are you doing with that??

I asked that my CD 57 be checked with the next blood test even though Dr. H's practice does not put any credibility in it he ordered it.

I was symptom free for about a few months--actually never really symptom free but about 85%.
I am not sure what I/we can learn from this to prevent relapses in the future.. Each time I have gone off antibiotics after feeling 85% better in the past 2 1/2 years the symptoms came back rather quickly. What I learned is that I still need antibiotics. Prehaps after I get over this set back I can pulse them 3 days on and 3 off. Are you still doing that? How is that going for you?

Scorpio..Thanks for the info on the IV meds. I am interested. I will contact you in September if insurance plays their usual games with me. I even have a positive Lyme test and they refuse saying that long-term treatment is not affective. Sometimes I wonder if they are right--but I know it made me feel better after I was on IV last year....it just didn't last--maybe because of co-infections not being gone..who knows.

Thanks everyone else who responded to my post it is very appreciated. Blessings.........
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/6/2009 2:58 PM (GMT -6)   

Hi minerals.  Yes, I had weight gain.  Last fall, I finally found a doctor who worked with my thyroid disorder.  With the first dose increase he prescribed, I swear my stomach went down about two inches in a few weeks!  I had no muscle tone despite exercising, and now I do. 

Make sure you have the Free T3 and Free T4 levels tested.  Too many doctors rely solely on the TSH result--in my experience, especially endocrinologists.

The way I found this doctor was to call a compounding pharmacy in my area.  I aksed the pharmacist if he could recommned a good thryoid doctor who does not treat solely by the TSH result.  The doctor I see is a general pracitioner.

I also recommend having saliva testing done for adrenal and hormone levels.  Lyme can affect all of these, and they can cause a lot of symptoms.  I had my testing done through ZRT Lab http://www.salivatest.com/


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/6/2009 5:09 PM (GMT -6)   
Ticker thank you again. I will check with a compounding pharmacy to see if they know of a doctor.

In the beginning of my lyme treatment I did all the testing for the saliva to test for cortisol, adrenals etc. Do you think I need to do that again????

And yes my free t3 and t4 were tested a few months ago and the fastin sample showed I was on the low side.

I am looking forward to losing some inches, I have never ever been this big. This 30 lb weight gain makes me feel awful along with the Lyme symptoms.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


CherylSue
Regular Member


Date Joined Jul 2007
Total Posts : 211
   Posted 7/7/2009 7:32 AM (GMT -6)   
I did Cowden for 10 months and then saw an LLMD and did abox.

The cumanda raised a cytokine storm, and I felt awful all the time.

If I had to do it over again, I would have skipped the Cowden protocol, and just did the abx.

IMO,
CherylSue

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/7/2009 10:42 AM (GMT -6)   

Hi minerals.  How long ago did you have the saliva testing done?

There is a lot of room in the Free T ranges.  Many people feel best when these levels are in the upper 1/3 of the range.  I felt terrible when they were in the low normal range.

I can understand about the weight gain.  It is bad enough to be so sick--you don't need that on top of it!

 

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/7/2009 11:26 AM (GMT -6)   
Cherylsue- Thanks for the reply. I have been on antibiotics for 2 1/2 years which also included 4 months of IV last year. I only began the cowden because I was concerned that after I stopped the abx symptoms would come back because that is what had happened a few times before in the past 2 1/2 years. What is a cytokine storm? Cytokine levels should be what and what do they affect? Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!

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