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Discouraged from No Change in Igenex Test

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Posted 3/16/2013 1:24 AM (GMT 0)
Hi I was wondering if anyone has had a similar problem as me. I have been seeing a Lyme specialist and have been on multiple antibiotics for about 9 months now, where he alternates the type of antibiotics every few months or so. When I first went, my test results showed that I had 6 bands on the Igenex test showing Lyme. Now, 9 months later, I got tested again, and while I didn't feel I got completely rid of the Lyme, I was expecting that it would show some improvement. Instead, my doctor called me to tell me that I showed 6 bands again. He said that I lost one, but then gained another. I was very discouraged and felt hopeless at that point, and I still do. I feel as if I'm going to be sick for the rest of my life and nothing is changing and I'm just doing damage to my body with the antibiotics. My doctor told me that he has had some patients show no change in the bands, but their symptoms did go away. My symptoms have not fully gone away. They improved a bit, but not enough. I still have very bad days. My doctor said that I have the option of going on IV antibiotics to accelerate the treatment, but at this point I'm just very worried and don't know what the right thing is to do. I want to get rid of this, but I can't tell if the antibiotics are working. Some weeks I feel amazing as if I'm getting better and other weeks, I feel really sick. Has anybody had a similar experience with no change in test results? And do the bands eventually go away? And would anybody recommend IV antibiotics? Any help would be greatly appreciated because at this point I have no clue what's going on. I have an appt with my doctor in about a month and will continue taking my antibiotics until I talk to him.
Posted 3/16/2013 2:24 AM (GMT 0)
Depends on a lot of things Chris. Have you been checked for co-infections? Also, antibodies stay in your system for awhile....it is what gives you your immunity. You are still relatively early in treatment. Why don't you update us on your story a little bit, some of your nagging symptoms maybe? There are a lot of very knowledgeable people that will have good advice for you.

As for me. I tested negative twice. So the third time through Igenex I was just happy some bands came back positive as an affirmation of what I was dealing with. I was fortunate to have such an immediate and positive response on doxycycline but alas, I, too want to see fast improvement - and I only officially started treatment 1 week ago!! I was self treating with doxy/herbs and have only added one more med in per LLMD but I want to be better NOW!
Posted 3/16/2013 2:34 AM (GMT 0)
Hi Opugirl and thanks for the response. My main symptoms are fatigue, which is my number one problem, and body soreness and joint pain in my knees, fingers, and neck. My mood is also affected, and I find I can be very emotional and irritable, but that's usually when I don't feel well.

When I first got tested I asked my doctor if I had co-infections and he said my test didn't show any co-infections.

Yes I would like to get better now as well, since this has been going on since September of 2011. I was given only 4 weeks of Doxy by a doctor that knew nothing of Lyme treatment, and 8 months later I started experiencing symptoms of fatigue and joint pain/tingling sensations.

I then found an LLMD and have since been on 9 months of antibiotics.

I was thinking I was actually at the end of treatment, but from what I hear from people, it can take a long time. I just talked to someone who said it took 14 months. I don't mind the extra time, I just want to make sure it's actually doing something and I'm not wasting my time on all these drugs.

What herbs do you take? Can you recommend any? Thanks again! :-)
Posted 3/16/2013 5:17 AM (GMT 0)
Hey Chris,

Lyme treatment can be a very long road. My daughter and I ave been treating for over 3 years, and I am still looking at another 2 or so to heal. But the things to look at is what other problems lyme could be causing. Lyme is notorious for troubling the endocrine system, thyroid and adrenals especially. Have you had them tested? A simple blood test could really shed some light on that. Problems with either of them could cause fatigue and pain.

As for co-infections, they could be harder to detect with blood work than lyme. There are just so many strains, and so difficult to detect. Your lyme doctor should be able to pick up on them with your symptoms.

Also, are you detoxing your body? There are a lot of toxins your body is dealing with. These toxins can cause a lot of pain and fatigue, as well as a whole slew of other symptoms. What are you treating with? Are you taking herbs/vitamins/minerals to help your body through this time? The body needs a lot of care and upkeep while treating lyme or any other chonic illness.

Samantha
Posted 3/16/2013 12:33 PM (GMT 0)
Hi Chris,

You will also find on this forum that once a lot of people feel like they've hit a plateau - they switch methods or doctors.

I highly recommend going to buhnerhealinglyme.com That is the herbalist that wrote a book for lyme. He has a lot in there for fatigue and joint pain. Japanese knotweed helped my joint pain and neurological issues a lot. I still struggle with fatigue and lack of motivation (a lot).

I am also on a whole list of supplements/vitamins mainly.
Posted 3/16/2013 8:32 PM (GMT 0)
Thanks everyone for the suggestions and advice. It does make me realize that it is normal for Lyme to take a long time to be treated so I will try to be patient. I will definitely take into consideration to try different methods and I am actually looking into incorporating an herbal supplement plan with my antibiotics. I am kind of reluctant and scared to get off the antibiotics though.

I have heard of the Buhner protocol and will start looking into it a bit more. I think I really need to start taking more supplements perhaps. I am taking garlic, fish oil, cinnamon, and Resveratrol, but would like to take some more so will have to do some research and check out the Buhner website. I can't take Andrographis though cause I have a bad rash reaction to it. I def struggle with fatigue and lack of motivation as you do Opugirl.

I am able to exercise on my good days but I try not to overdo it cause sometimes I feel worse after so I keep it to a minimum of 30 min but I am able to exercise. My eating habits have actually improved and I try to eat everything without preservatives and I also cut out dairy from my diet and I minimize the amount of sugar I eat. I try to detox by drinking water and sometimes I use the saunas which I find help me feel better.

Well thanks again for the advice and I hope everyone feels better as well.
Posted 3/17/2013 12:04 AM (GMT 0)
Chris, it can take a long time to get rid of these infections. Most LLMDs treat for 2 months after all symptoms are gone. It takes a really skilled LLMD to get rid of these infections. The abx. need to be at high doses, changed around frequently, co-infections needs to be treated, etc. Many LLMDs will pulse abx. so that the bacteria "comes out of hiding" and then you can get it w/ the meds when it's out. It's complicated to treat and is a long, slow process. I have heard that the Biccilin injections can often be as effective for the neuro. stuff as IV abx.; I think Dr. Burrascano mentions that in his guidelines also. That might be something to try before going to IV. Not fun because they do hurt, but it's usually give twice a week.
And adding some of Buhner's herbals to the abx. might help also.
Posted 3/17/2013 1:47 AM (GMT 0)
I'll look into the Biccilin and find out more about it. Thank you for the response
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