posted
Hello. I almost never post here...I guess I avoid the board because I want to pretend mentally that I'm well even though that's not the case. Anyway, I have a long lyme history going back 12 years. Last year I was re-bit.
I've been seeing a great lyme DR recommended here on the board since May. My question is this... on my last blood test, it showed that I only have one band for lyme. My doctor is telling me this means that lyme is "subdued." Is this true?
I've been super-sick lately...have ongoing battle with candida too and we're thinking this might be my main problem now. Anyway, I just really need to hear from people other than my doctor what just one band showing up on the test means.
Can someone feel really bad still from one band?? Is it the kind of thing where symptoms are more telling than the test? It's SO hard for me to tell b/c candida and lyme symptoms are so similar. Looking forward to hearing your thoughts!
THANKYOU!!
Posts: 41 | From New Jersey | Registered: May 2009
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posted
Sometimes the sickest people are those with few bands. It CAN mean that your body is unable to make antibodies to show up on the test due to its weakened immune system.
Which band is it?
Be SURE to get the candida under control. It will keep you from getting over the Lyme and as you said... maybe you're only dealing with candida now!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I only had one band present. Thank God mine was Lyme specific.
A local duck actually diagnosed me with Lyme.
I found this site and Lymetoo (Thank you) directed me to a LLMD.
I not only had Lyme, but bartonella and babesia.
So....one band doesn't mean a whole lot.
What are your symptoms?
Which band is reactive?
Is it an Igenex Western Blot?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Other pathogens can cause lyme like symptoms. Enterovirus, HHV-6, EBV, Cpn...all can make you very ill. Consider getting tested for these pathogens too.
If you do a search using my member number and the words "viral testing" you will find some info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Interesting. Thanks for the replies. I don't have the lab results from my DR so I don't know which band it is.
I am ready to tear my hair out with whether I need more lyme treatment or candida treatment or both. I tested positive for candida in a recent blood test. No shocker there.
My doctor has been trying to treat the lyme since May with Minocycline. I've had such a rough time, going on and off and we're been experimenting with antifungals, Lamisil and now Nystatin.
At first, Minocycline perked me up as far as depression and mental lyme stuff...I was so excited. My physical exhaustion was still so severe and my shakiness which gets so bad. My LLMD said he usually sees the mental stuff clear up first so the physical improvement would come after that. Well, it never came.
My next question is... is it possible to keep candida under control but still take antibiotics??? Like by taking major probiotics and natural antifungals in between my mino doses?
I am scared of lyme and also scared that all this suffering is mainly due to candida...I'm clueless and so tired of it.
My symptoms are severe exhaustion, chills/flu symptoms, nervous system shakiness that gets SO much worse when I try to move and do housework or anything, night sweats, super-low endurance...
...tingling and creepy-crawling sensations all through my body, some weird numb feelings in my hands sometimes, ringing in my ears, depression, anxiety and I know there are others but they're the main ones.
My intestinal area feels soothed when I take probiotics, worse and gassy when I take Mino. Sometimes when I take probiotics, I'll get SO perky mentally and feel so soothed mentally (used to happen with Lamisil too but stopped)...the other night though I took a Nystatin pill and thought I was going to completely loose my mind...it was terrible.
Sometimes probiotics give me a definite boost of energy, sometimes they make all the tingling, creeping worse! Mino makes the creeping, crawling worse through my body.
I also get a really bad squeezing feeling in my brain or head, sometimes gets much worse from probiotics (I figure it's killing yeast or something), sometimes I get the very uncomfortable squeeze brain feeling from Mino. (i think I have MAJOR candida in my head and sinuses from strange feelings I've experienced)
I also feel a slight vaginal itching after I take Mino. All of these weird reactions drive me NUTS and confuse the heck out of me. My doctor just put me on an experimental month of Lamisil and Nystatin together...no Mino. I've been sooo ill on this but also bad on Mino. Don't know what's going on, I don't know if it's major yeast die-off or what.
So after all that, is it possible to keep candida under control but STILL take antibiotics??? I'm very curious to hear if any of you have been able to do this.
Or, if the potential of candida is so bad that it might be the main reason you're so ill, do you have to make the decision to use natural antibiotics instead, like garlic or something?
I really need to hear how those of you who have candida but also lyme, how you go about treating both?? Do you still stay on antibiotics?
Thanks for listening...been a rough year.
Posts: 41 | From New Jersey | Registered: May 2009
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posted
Hi Lymetoo - Thanks for reading all that and replying. I react so badly to antibiotics lately and have only seen improvements with yeast treatment so I think I'll keep doing my Nystatin trial.
I want to keep the lyme down though with something natural...is garlic the best natural method for that for people like me who just can't tolerate antibiotics anymore?
Also, not sure if I'm taking enough probiotics. I can have some pretty strong reactions to them so I have to pace myself. Here are the brands I'm popping lately...
Udo's Choice Super 8 Hi-Potency. One capsule supposedly has 30 billion.
Solaray Multidophilus... 3 billion per capsule
FloraSmart...6 billion per capsule.
I don't have a set regimine for the probiotics, I just pop them through the day.
I also eat unsweetened kefir and stoneyfield yogurt everyday.
I've been on the yeast diet for years...veggies and meat, no sugar or refined anything. I'm always confused though about the grains, if I should totally cut them out or not. Sometimes I do, sometimes I eat some barley, rice, buckwheat, oats.
Anytime I try eating something sugary or a high sugar fruit, I react badly to it.
I initially had babesia with lyme years ago...was treated for babesia. My latest LLMD checked me for it recently and the test was negative.
Couple new questions... I wonder if I'm taking enough probiotics...don't know. Is there a minimum amount for someone with systemic candida?
What is the usual Nystatin dose? My doctor prescribed me 2 500,000 unit pills a day. The pharmacy had to special order it so I'm assuming my doctor gave me a lower dose b/c I'm so sensitive and reactive to everything.
Also...is it possible to kill lyme with natural things as much as with antibiotics?
Thanks.
Posts: 41 | From New Jersey | Registered: May 2009
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posted
I am not that familiar with the probiotics you mentioned. It might be cheaper, easier, and more effective for you to switch to a high quality one like Theralac or Ultimate Flora.
You can find the Ulitmate Flora at your health food store and Theralac at www.theralac.com
I think the Theralac is better than Ult Flora, but the Ultimate has 50 billion per capsule.
I used to take 4 pills of Nystating per day while on abx. Began with a much higher dose in the beginning to get rid of the yeast. (like 16 pills a day for a week)
You might look into the Cowden or Buhner protocols for natural things to hit Lyme. I don't know that much about them.
Or you could Rife.
Babesia... you can have it even with a negative test. Maybe a trial run of babesia meds would be a good thing to try??
Garlic is good for Lyme and yeast.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I would listen to the advice above. It sounds like a combination -- but the Lyme, from my observation is still very much alive.
You're digestive response means your digestive system is all inflammed as well.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Generally speaking I think it is considered a good idea to change to a different antibiotic once you have plateaued (stopped improving or stopped seeing any changes) on your current med.
You might need to switch antibiotics AND add others, for combination therapy. Some people respond best to this appraoch.
I experienced improvement on VERY low doses of minocycline for a few weeks, but then started to feel much much worse for the next 3 months, so had to switch. I could never take more than 25 mg every 2-3 days.
Minocycline just doesn't agree with some people, and is considered one of the big guns as far as reaching the CNS, so it can really pack a wallop. There are plenty of other antibiotics you can try that might not be so harsh on you.
ALSO, you should be taking your probiotics as far away from your antibiotics as possible. Otherwise they can be negated/killed by the antibiotics.
I take mine (Therelac) in the morning as soon as I am up, then my antibio at lunch, then probio again at bedtime.
You may be taking anitbiotics more than once a day, so you will have a different schedule.
posted
Uugh...I don't even want to think that babesia might be a problem still. I'll mention it to my doctor and see what he says. I thought he said he has such an excellent lab that it does rule it out totally, but I may be dreaming that.
When I was just sinking before from mino, I thought it was an allergic reaction so my doctor tried me on Amoxicillin. I reacted the same exact way from the mino...
My head got so scary swollen all over, inside my nose swelled, got itchy skin, heart pounding, creepy-crawling sensations, just felt like I was SINKING into a scary, weak, crushing-fatigue abyss...
...I would get terrible anxiety, major brain fog, ugh. I'm sharing a family germ right now and decided to pop a couple mino. I could only tolerate about 2 of them and all this started again after taking the third pill last night. NO THANKS!!!
I just hate knowing that antibiotics can help lyme but they might be poison in my case.
I looked into the protocols you mentioned Lymetoo - I don't know if they're for me, I can react pretty bad to herbals. I seem to tolerate garlic.
Does anyone know of a good success story JUST from garlic as the antibiotic? i'm assuming you would have to pop a ton of pills per day.
I've heard of the rife thing as long as I've had lyme but never looked into it. Would that be more effective than popping a ton of garlic??
Posts: 41 | From New Jersey | Registered: May 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
You might want to try Ceftin. I have been able to work my way up slowly on that without the terrible herxes that would put me in ER.
You have only tried 2 different kinds of antibios, they all can have different effects. There are many more to try. I have had great success so far on Ceftin, for instance, but Minocycline was terrible for me, and I don't do well with Sulfas either.
Also, your LLMD might agree to start you out on small doses and work your way up over a long time, like I have been doing.
When you had facial swelling, did your doctor(s) not note that as an allergic reaction? I can't tell from your description if you mean you had anaphylaxis.
I thought it was an allergic reaction but then Amoxicillin did the same thing to me and I took Amoxicillin for years before for lyme. I guess that's why I think it's making yeast worse b/c it happened with both drugs.
Is it possible these weird reactions could be herxes?? I never experienced herxes in all my lyme-experience like this before.
I think what I really want to know is...what is more of a concern, more crucial to treat...lyme or candida? Or just to try to do both at the same time? My doctor said being on one antifungal drug 7 days a week along with antibiotics would be too toxic.
Posts: 41 | From New Jersey | Registered: May 2009
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quote: I think what I really want to know is...what is more of a concern, more crucial to treat...lyme or candida? Or just to try to do both at the same time? My doctor said being on one antifungal drug 7 days a week along with antibiotics would be too toxic.
Yeah diflucan is pretty rough stuff :/ Nystatin afaik though is not absorbed - passes trough your intestines so no harm
Posts: 856 | From MA | Registered: Jul 2009
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