posted
I was diagnosed with Lyme's after a positive iGenix test last Summer. IGM 31 +++ 39 + 41 +++ 83-93 + The Dr at the lab told my LLND it was one of the most positive results she's ever seen! I started doxy in Sept 2012 and then at the advice of an LLMD also added in Tinidazole to the regimen. Didn't notice any herx, any improvement or any worsening of symptoms at all for 3 months. We're beginning to wonder if this is really Lyme and the LLMD we consult with is too. Anyone had similar experience? I then got pregnant (see other post) and some things have been changing but I'm still not sure what to do next! Thanks for any thoughts, advice, experiences!
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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posted
It is hard to know. I'm not a test result soothsayer like others on this board. I'll leave the interpretation of your numbers to them.
I responded to your post regarding pregnancy. It's possible that caused a big enough shift that your symptoms subsided.
The question probably is, how much doxy and tindazole are you taking. Sometimes if dosages are too low it doesn't even touch anything.
Posts: 274 | From United States | Registered: Feb 2012
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poppy
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posted
How long did you have symptoms before getting a diagnosis? How much doxy were you taking? At lower doses it is bacteriostatic, which means there may not be a herx reaction.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
You definitely have a positive test. Since you are pregnant, you need to be under the care of a medical professional who knows how to treat during pregnancy.
It just occurred to me - you're in BC - Dr Ernie Murakami is a retired Lyme doctor in BC who will consult I think for free over the phone. You can google his name and phone number.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
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Member # 33574
posted
I have read that when you are pregnant, you often feel better when you have Lyme because your immune system is working better than it normally would. You obviously have a lot of antibodies working hard for you.
I know that it is recommended to be on ABX when you are pregnant if you have lyme DX so as not to transfer the disease to your baby. As long as you are not suffering from any problematic side effects, I would try to stay on the ABX even if you don't think they are helping you.
Posts: 2386 | From New England | Registered: Aug 2011
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dbpei
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Member # 33574
posted
islander, I just read your other post. I am SO sorry that you lost your baby. I didn't realize this when I posted. I hope you are doing okay.
I don't know how to advise you as to what you should do now. I would discuss with LLMD and if you do take a break, perhaps get retested after having been off ABX for a while.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thanks everyone, I really do think that Lyme could have had something to do with my loosing the baby if that's what I really had. I went off the Abx during pregnancy as I read from FDA that doxy especially is unsafe during pregnancy. So, dbpei, thanks for your advice on getting retested, as yes, I've been off the Abx for 3 months. Back on again now, and noticing symptoms return as menses return.
YingYang, Poppy, Faithful 777 & Lymetoo - I'm on 200mg Doxy twice daily, so 400mg per day. Then when I was on Tinidazole, I was on 500mg twice a day and 100mg doxy twice a day (halved the doxy dose) I did one week on, one week off and this was at the advice of Dr. M******* . Should this be high enough? Aggressive enough??
Poppy & Lymetoo - My symptoms started December 2012, although I think I was bitten a couple years before that - that's the only time I remember having large swollen bites that at the time I thought were spider bites, and I had 2 of them at once. The symptoms I've been having over the past year have been muscle aches, pains, weakness, severe fatigue ( I used to be a half marathon runner, now I can barely walk to the end of the driveway!), sleep disturbances, nightmares, skin itching but no rash, eye pain and sensitivity to light, hot and cold feverish symptoms, night sweats (mild), increased hypotension. They come and go and right now aren't severe at all since they all dissappeared during pregnancy and are now slowly coming back.
Robin 123 - Yah, we have been in contact with him for some advice. He's actually the one who made us question whether this is Lyme or not. He said I should be responding to treatment by now if that's what I'm really dealing with. I was originally diagnosed with CFS.
I don't have an LLMD but I do have an MD who's very willing to work with us. I don't think he has any experience treating Lyme though, but he does seem to know the "right" dosages when he prescribed doxycycline, and he wrote me a 7 month prescription straight up! He's suggesting we try ceftrixione IV for one month?? Any thoughts?
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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posted
Thank you Timaca, have you had bloodwork done at this lab personally? Or another lab? We're thinking about getting a full panel done at Fry.
Lymetoo - At iGenix I only had the test for Lyme and not co-infections. I've since had test for Babesia, Rochalemea, Erilichia, this was through my MD and so was just the standard CDC tests, do you know anything about the effectiveness of these tests? Am I better paying to go though Fry/iGenix etc? They all came back negative with the exception of one which they wouldn't even run as CDC denied my doctors request to test since they said it wasn't effective! Can't remember which one of the 3 that was though, I've a feeling it was Erilichia.
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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posted
Maybe I'm not seeing any reaction because I'm taking the doxy with food??? Does it really reduce the dosage alot? I tried without food for one week but I almost threw up every time... my stomach is pretty sensitive!
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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TF
Frequent Contributor (5K+ posts)
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posted
All lyme doctors tell their patients to take doxy in the middle of a full meal. If you don't you will never be able to continue taking it due to reflux, upset stomach, vomiting.
So, you are doing the right thing. Eat half a meal, take the pills, and then eat the other half of the meal. Do it this way every time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I'm not seeing any reaction because I'm taking the doxy with food???"
As long as you're not taking it with calcium/dairy. That's the food that makes doxy not as effective.
I threw up on doxy capsules but not the tablets.
You should definitely test for other coinfections. So far I have 11 other infections going on. Just got blood work back and there were 5 more that I didn't know about.
Here's the lab requisition sheet for Stanford. Try to get tested for all of these plus H pylori.
posted
I'm so sorry to read of your difficulties. When I had Lyme, I made little progress until I attacked the coinfections. I do not have a spleen, however-- that is well known to make Babesia particularly dangerous. The chinese-herbal concentrate artimisinin, from the herb Artimesia anua, helped tremendously for that. There are some cautions one should take with artimesia, just like with anything. I wish you an optimal recovery, in all respects. DaveS (note: sloan-kettering's info on artimesia anua: http://www.mskcc.org/cancer-care/herb/artemisia-annua
)
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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nefferdun
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Member # 20157
posted
Bands 41 and 23 indicate protomyxzoa and your symptoms also indicate you might be infected with it. My symptoms were/are insomnia, profound fatigue, hot flashes, intolerance to cold (cold extremities), thyroid disfunction, nightmares, brain fog, muscle and joint pain, sensitivity to light, headaches, sporadic air hunger, sporadic loss of voice and sporadic dry cough.
Try taking ivermectin or the human version Stromectol. You should know pretty quickly if it is working. Protomxzoa is a blood protozoa parasite that builds massive amounts of biofilm to protect itself.
It is incurable but you can control it with a low fat whole foods vegan diet. Not what you want to hear, but if you want toget better, you need to know if you have it. You can get tested at Fry Labs in AZ. It is not considered a "lyme" co -infection but most people with lyme have it.
You probably also have borellia and maybe other infections as well like Babesia but PR is probably the dominate infection that needs to be addressed first.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
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Member # 30398
posted
Other parasites may also inhibit Lyme treatment from working...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have gone through this, too - re: non responsive to Lyme treatment. I don't really know what to think at this point. My Igenix test was much less of a positive than yours was, though.
Many of our symptoms could be from alot of other illnesses or toxicities. It's so hard to know for sure. The tests may not be accurate, either. I was also diagnosed with CFS & Fibro, as well...
Everyone is different. It's hard to say for sure, "Yes, it's this... or that." Some people do well with alterative treatment & diagnosis like ART testing or with the Bionic 880 infrared light treatments.
Good luck. I hope you can find what is making you ill.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Thanks everyone. I feel like we just don't know which direction to go first since we don't have an LLMD "fighting our corner", we're kind of being our own Drs with the help of a regular MD who has no experience. So at this point we're choosing to pay to go private and see Dr B in Vancouver, since we live in BC. Anyone heard much about him? I'm hoping he can give us some direction as to further testing, co-infection treatment etc.
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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lululymemom
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Member # 26405
posted
My daughter and I both contracted Lyme in BC.. Doxy was not a good first med for her. She did much better on Ceftin.and Flagyl. She didnt tolerate tinidazole well. Ive heard good things about Dr. B. but never went to him. Dr. C. Is another naturopathic doctor you could consider. Unfortunately medical doctors here dont know how to treat Lyme and dont usually want to treat Lyme patients.
BTW. My daughter had 6 IGM bands positive on her Igenex test.
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