posted
I am really frustrated at the moment and not sure what to do next. I am currently seeing a ND, but I am not really getting anywhere and I am wondering if I should stop going to him. I am spending so much money and not getting anywhere.
I was bit in 1999. I caught it early but I was hit very hard right away. Given 1 month of Doxy and of course didn't feel any better. I was given another month and still didn't feel better.
Then she gave me amoxicillin and I did start to feel better but broke out in hives and had to take steroids, but since I was feeling almost better, I just stopped any other treatment for it.
A few months later I started to feel worse again so I went to another Dr and she did blood work and told me I was bit again, which I know I wasn't, so obviously I still had it.
I started to see Dr H, I think around 2001 and was treated by him for a few years, but never really made any improvement in that time. He did test and treat me for a few co-infections, I can't even remember which ones, but again, no major improvements.
In 2004 I got pregnant with my second child and Dr H had me take amoxicillin and all went well, I did have a healthy baby. After the pregnancy I actually felt pretty good, so I thought I was well.
After a few months I started to decline again so I thought it was yeast and went to Dr H office and they even did a challenge test for Lyme and it was negative. That was in 2006.
Since then I have been treating yeast off and on, but strictly now since 2009. I started seeing a Dr who specializes in yeast last year. By my tests I really only had a mild case. He also tested me and I test negative for metals and parasites.
I can not tolerate probiotics and he did an organix test that showed I had a bacterial overgrowth but then the SIBO test came out negative. I just did a stool test and it showed that I had some additional bacteria, but not enough that it should be a problem.
My Dr is treating me for it anyway. It also showed I had no Lactobacillus bacteria, but the Bifidobacteria was ok.
Over the years I feel I am getting worse. I am still so fatigued, which is my main symptom. I do get extremely achy too and stiff. Not pain, just achy. I have no muscle tone and I am very weak. I have been trying to exercise recently.
I am at a loss as to what to try next. Or even test for. I have a Lyme Nosode that I tried maybe 2 years ago and I did react to it , so I was thinking of trying it again.
I was also thinking leaky gut. I did test positive for mild leaky gut about a year ago, I know that can cause fatigue as well, and I'm not sure it's been resolved yet. I was thinking of asking for a repeat test.
Any ideas would be appreciated.
Posts: 116 | From Upstate NY | Registered: Apr 2014
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I would treat parasites anyway...most testing is flawed ... consider rife ,bvt and herbal tx for the lyme ...gastro missed my parasites
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Member # 45305
posted
If you have the money get a Ceres nanotrap test; 400 dollars to see if Lyme is active. You can also do a DNA Connexions urine test to see if any coinfection DNA shows up. That's 425 dollars.
If you don't have that money, buy Samento and Banderol and see if you have a Lyme reaction.
Any three of those will tell you if you're still dealing with Lyme. Or, you could have an untreated co-infection.
I believe in post-Lyme syndrome. I think you actually can kill off enough of it that it's not really "active" anymore but your immune system is still dysregulated from seeing the dead bugs in your system. In that case, bee venom therapy might help.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Thanks Blue, I am sure it wouldn't hurt to treat for parasites anyway, I will probably give it a try.
Jordana, the Ceres nanotrap test sounds very interesting. Is it reliable? I could probably spend the money if I knew it was very accurate. I just don't trust many tests.
BVT is out, I usually swell up pretty bad from bee stings, so I don't think I would want to attempt that.
Posts: 116 | From Upstate NY | Registered: Apr 2014
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bluelyme
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Member # 47170
posted
I dont swell up that bad anymore with bvt ...in areas of inflammation it does hurt like heck..it doesnt really itch any more either ..pain gain etc etc, its kinda fun on meridians plus flowers and honey
.my doc said he has very good results with the dna connexions .no doc needed they are backed ipna few weeks though
andrographis ,smilax ,houttynia ,teasel ,sweet annie ,lily of the valley and others have been helpful herbs
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Is it reliable...
Eh. The people who created the test sure think it is. I'm sure we'll hear about all of its bad points from the CDC eventually but it's the newest best invention.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Fatigue could be adrenals. Don't know if your doctor would like to run some cortisol tests with you.
When I didn't know what was going on, I survived on flower pollen - it gave me all my energy back. The company was called Cernitin and it is still around.
I also took malic acid and magnesium, which provides energy. It's important to be taking some magnesium, especially since you mentioned stiffness.
I take turmeric powder for any achiness and pain in muscles and joints - I get it in bulk at the health food store and dip 00-size empty capsules in it and take a couple a day. It really works to reduce pain for me.
Re muscle tone, can you get in a pool? If so, doing very gentle water resistance is a good way to start working your muscles again. I also did a lot of stretching out in the pool, and that really helped take down pain in them.
Any progress is gradual with us - don't push the pace, just stay with what you can do and gradually do more. Eventually, we can meet goals!
Leaky gut practitioners with good websites - Donna Gates and Josh Axe. There's also an online summit on now through Monday Oct 3 and some of the speakers are addressing the gut. Free to watch at www.thedetoxproject.com.Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Lots of great suggestions here!! Thank you so much!
Biotoxin illness....is that mold? Is there a specific test for that. Two things I do still have that I thought would be resolved now that my yeast levels are low, is an itchy scalp and toenail fungus...hmmm, interesting!
I am working on my adrenals now. I had them checked and was taking some supplements for them and got hit with something else so I got a little sidetracked, I need to have that retested.
The flower pollen is exactly what I need, just something to give me a little energy, I will get some for sure!
I have been exercising with some small weights, I pushed it too quick I think to work up to the hour, I think I need to cut back and work up more gradual, I think I over did it too quickly!
I am actually signed up and watching the detox summit as we speak...lol. Really good stuff!
Posts: 116 | From Upstate NY | Registered: Apr 2014
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posted
Good for you for taking some action! Please report back if anything helps. Yes, slow change with us. Only increase something if we're handling it so far.
I am making great progress in PT right now, but only slowly and carefully.
Also good for you for watching some of the detox summit! Feel free to post about it at the thread I started in General.
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would see a good ART practitioner. The blood tests just miss so much.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
The ND that I used to see would go on his intuition. He would sit with the supplement or would wonder how to treat me, by sitting there quietly, and would go with what felt right to him.
I switched to the Dr I am seeing now because my husband didn't trust him that he was correct without doing any testing on me.
I trusted him though, and I have to say that he was right on with what my testing did show. He had said that he didn't feel that parasites were a problem for me. And many other things that proved true with the testing.
Part of my problem now too is that it is getting really expensive with all these tests. I am wondering if his method would be comparable or as good as an ART practitioner, I am not sure of any around here where I live.
Posts: 116 | From Upstate NY | Registered: Apr 2014
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