What else can I do??

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lorig
New Member


Date Joined May 2009
Total Posts : 9
   Posted 11/5/2009 11:01 AM (GMT -6)   
Hello,

I got diagnosed in July through Igenex. I have 3 autoimmune diseases: Hashimoto's Thyroid, Addison's adrenals, and Celiac Disease. I've been going around and around for the past 3 years trying to get well to no success. The hormones that are suppose to work do not make a dent. Hence, the lyme diagnosis sure makes sense now. I think I've had it for 20 years so I know it will be difficult to treat and I have a long road ahead of me.

In July, found a LLMD and started abx. He's conservative and didn't want to shock my system. I've made slight improvements, but not what I expected.

Currently, he has me on Clarithyromicin 500mg twice daily, and Doxy 200mg per day.

I do detoxing with epsom salt baths, infrared saunas, coffee enemas, body brushing....

I think I've had some herx reactions in September - knee joint pain, severe back pain, allergies increased...but really nothing major. Not sure why? I guess I'm wishing for something like the flu for a week to know something is working.

I've had people tell me I'm really not on that high of doses of abx and that's why. Others say I need a cyst type abx.

My doc isn't into the natural stuff at all so I'm trying to learn what I could possibly add in that regard to the abx. I've been doing a lot of reading, but I'm so overwhelmed. There are sooo many options and so much controversy. I've seen people comment on chinese herbs. I am taking a lot of Vitamin C to boost my immune system as well as probiotics. Just added chlorella.

Any ideas anyone?
Thank you so much!

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 11/5/2009 12:15 PM (GMT -6)   
Have you read Healing Lyme by Stephen Buhner?  I just posted a link for a video of him speaking on planetthrive.ning.com  You have to sign up and become a member apparently, but it's a great website and the video is very informative.
Take CAre, KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


lorig
New Member


Date Joined May 2009
Total Posts : 9
   Posted 11/5/2009 3:47 PM (GMT -6)   
Thank you for the information. I may have read his book among many others. I sort of shut down because of how much information there was out there. Can you tell me more about Dr. Zhang's protocol? That is one that jumped out at me, but I heard some good, some bad and that it's expensive.

Thanks for the video.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/5/2009 4:35 PM (GMT -6)   
KO,

I notice on your profile that you did Dr. Zhang's protocol and stopped after 6 months. You then started on Buhner's. Did you stop Dr. Zhang's because it quit working?

Lorig - there is a lot of information out there and I think you are doing the right thing by choosing something and then finding out all you can about it. Good luck with the herbals. I see you have tried the infrared saunas. I'm supposed to start them in January. Do you think they were helpful? Are they expensive?

Rose
I have Lyme; it doesn't have me.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/5/2009 8:51 PM (GMT -6)   
Rose,

You can get a portable infrared sauna off of eBay for around $169.00 or under. There is one now with steam and I think you can also use it without the steam. I'm gonna have to email the seller and ask.

The saunas do work. I even herxed about an hour after I got out but I felt better the next day.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/5/2009 9:43 PM (GMT -6)   
CG - That's a lot less than I expected. My LLMD told me they were upwards of $1,000 for a 2 person. I dislike enclosed spaces so he didn't think the 1 person size would work for me. I will look on ebay.

Rose
I have Lyme; it doesn't have me.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 11/5/2009 10:02 PM (GMT -6)   
lorig & Rose,
I did Zhang's for 6 months, and felt I made progress on it, but I felt I had stopped improving so I switched to Buhner's.  Dr. Zhang's is expensive over $300/month.  Buhner's at full dose is about 1/2 that.  I had a problem with the Andrographis (I had a severe lessening of taste, not a complete loss), but I emailed Stephen Buhner and he suggested subing Siberian Ginseng for the Andrographis.  So far so good.
lorig, you can do a search for Dr. Zhang lyme disease he offers a free phone consult, he request that you read his book first and fill out a questionaire.
Rose, I use the 1 person portable sauna that you sit in with your head outside, it kind of looks like a toaster.  I love mine.
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/5/2009 10:09 PM (GMT -6)   
Rose,

The ones off of eBay are not made of wood. They are collapsable and you can take it anywhere you go. They work just as good as the expensive ones. They are small though. I don't like small spaces either but I can get in mine and it doesn't bother me since my head and hands stick out.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


lorig
New Member


Date Joined May 2009
Total Posts : 9
   Posted 11/6/2009 11:12 AM (GMT -6)   
Thanks everyone for their suggestions. I do get concerned about the cost of all the supplements on top of the antibiotics and all the other stuff I take. Dr. Zhang's is way too much money for me. I've checking out Healing Lyme.

I bought my infrared sauna from ebay, it is portable and collapses. I use it every night and love it. Make sure you find the one seller who offers a year warranty. I don't get any "herx" reaction after being in it. I did an epsom salt bath yesterday and it's the same thing - don't feel good or bad either way....same with coffee enemas. Any ideas why none of these detox methods make me feel worse?

Thanks.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/7/2009 12:18 PM (GMT -6)   
KO and lorig,

Thanks for the informatin about the infrared sauna. I definitely like the idea of having my head outside of it. That way I won't freak out about being in a small space. I'll look for one on ebay and make sure it has a warranty.

Rose
I have Lyme; it doesn't have me.


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 11/7/2009 1:53 PM (GMT -6)   
I just purchased a 2 person infared sauna from BJ's for $500 (half off sale). It is awesome. I love it. Heats up quickly and works wondeful. You don't feel enclosed because the front is a clear glass door and also has a window on either side. A place to plug in mp3 player with built in speakers. Can't say enough about spending the money on it.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 11/7/2009 8:14 PM (GMT -6)   
Dumb question from a very broke Lymie: Is there not any way to obtain some of the same benefits in a warm-hot bath w/ a heater in the room to make you sweat?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


lorig
New Member


Date Joined May 2009
Total Posts : 9
   Posted 11/10/2009 5:35 PM (GMT -6)   
I don't think it would be the same benefit, but I could be wrong. I do know that you can find instructions on the internet on how to make your own infrared sauna pretty cheaply. Not sure if anyone has a link to this??

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/10/2009 11:05 PM (GMT -6)   
Sorry to be so ignorant, but what is BJ's?

Rose
I have Lyme; it doesn't have me.

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