posted
ok so, after all is said and done, my LLMD doesnt think I have Lyme. at least not active lyme
I believe him, I really have no reason not to believe him, hes been treating lyme for a long time and I know he follows the guidelines
I was tested back in October of last year. I never saw a rash, I never saw a tick, but it was late october and my friend said he THOUGHT he saw a tick on my vagina when I was peeing in an alley, although he wasnt sure. I never found the tick..
I did test for it the next day and when the results came back it came back as a very recent infection. I believe bands 41 or 23 were present for IGM. there were no igg bands. i was put on doxy for like 6 months. after a month i had two igg bands, 41 and 23. i felt fine and never had any symtpoms during this whole time. I went off doxy in april. and was fine ever since
I started not feelin good in september. just really run down feeling and out of it. so i paniced and thought i had lyme or something. thought it came back. my antibody results came back just equivocal twice, i demanded a western blot. it showed IGM 41 and 23 and IGG 41 and 23 although thats when it said all along
the lyme doctor doesnt think its active lyme. should i believe him?
Posts: 995 | From somewhere out there | Registered: Oct 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If you were feeling fine in April, and just recently started feeling unwell, were you checked for things such as iron deficiency, thyroid issues, etc?
If you never had symptoms when you thought you might have Lyme and were fine since, I would not jump to thinking it's Lyme without ruling out lots of other things.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I have had my thyroid looked at. been checked for mono, have had my eyes examined twice with dialation. and quite a bit of blood work done.
i saw an allergist and it didnt come up as an allergy to anything he checked me for. he thinks it mite be chronic sinusitis.
my main complaint is my head feels out of it and my eyes are very tired and sore. i get headaches behind my eyes kind of. and when I wake up in my morning my eyes look all fluidy. my eyes look sick. i feel like crap
this startd beginnign of september.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
Well I had it last year. and from the first test i had done it only showed one igm antibody and no igg. therefore it was caught very early it seemed
i was on 200 mg of doxy for 6 months and I had NO symptoms at all during that whole time. after six months on doxy i went off it in april and continued to feel totally fine all the up till beginning of september at the beginning of september I started feeling like i was getting a cold. my head felt out of it and my eyes felt tired. now my eyes feel filmy. blood work all came back fine. i paniced and thought "what if its lyme disease again". had lyme antibody test that came back equivocal, not positive nor negative. and they continued to come back just equivocal .but its been equivocal since like july when i was last retesed.
my lyme tests for WB have always come back the same. 41 AND 23 IGG and IGM. thats it.
he just doesnt think its active lyme. he treats it alot.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
I actually dont know if i ever had lyme disease. i dont have any actual proof. i had no rash, i dont recall a tick. i just dont know.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
they checked me for co infections and bartonella q and bartonella h came up very low levels IGG positive. but the levels were very low and it was only IGG
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
So basically you feel like you have a bad cold? Have you tried using a neti pot? There is a wicked cold going around this year ...... mine has lingered for about a month with watery eyes, runny nose and a cough.
Did you get a copy of your bloodwork? It would be helpful if you posted what level your hemoglobin and TSH are.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i feel really out of it. just like crap. i can walk and stuff but my head feels out in the clouds. and my eyes are like sore.
its getting worse as time goes by. beginnign of september i just woke up one morning and felt like my head was in the clouds. just thot i was getting a cold. then i noticed my eyes just felt tired and my eyes looked sick. i was still functionable. but as time went by i noticed it wasnt going away. my hands and feet feel a bit cold at times too.
i also went to an allergist who checked me for common allergies with a scratch test and it came back normal. altho he thinks im having chronic sinisitis.
its my head and my eyes, my eyes feel so heavy and in the morning they look kinda swollen and feel like theres film on them. they get filmy during the day and i have to blink a few times to clear it,
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
well it feels a little worse than a bad cough. i just feel like crap and because of it its making my anxiety go up. im not used to feeling crappy and im not working because of it.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
well it feels a little worse than a bad cough. i just feel like crap and because of it its making my anxiety go up. im not used to feeling crappy and im not working because of it.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
well it feels a little worse than a bad cough. i just feel like crap and because of it its making my anxiety go up. im not used to feeling crappy and im not working because of it.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
I came back as having small amounts of allergy to dog, cat and all common molds. but the allergist said yesterday that the amounts were very small during the scratch test and he does NOT think this is allergy related. he thinks its chronic sinusitis. but not the bacterial version of it
i was told by the lyme doctor that he thinks i have candida of the intestine. yeast overgrowth, typically caused by too much antibiotics use and wants me to eat no sugar or bread for a month and see how i feel. im skeptical
i did notice that when they put me on the doxy it made my head feel even worse and the gave me detox factor and it made my eyes swell up even more.
when the lyme doctor decided that he didnt think i had lyme he told me to stop the doxy. and not take anymore supplements
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
my eyes arent watery or itchy tho, they just feel and look very tired and they get sore and they feel filmy my eyelids seem droopy and inflammed sometimes. the symptoms get worse and lessen up a bit during different times of the day. when I wake up my eyes look real sick. and they feel kinda gunky. but no discharge or anything. no redness or bloodshot.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
i had liver function test and kidney function test and they both came back fine.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
oh yes and a strange dry cough that hasnt really went away has been here since end of august. feels like a constant tickle and sometimes it really makes me cough alot. its weird. was checked for asthma came back negative. and the cough is dry. experiencing some body fatigue as well and some general soreness
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
I don't mean mold allergy. Mold exposure causes toxins much like Lyme.
Candida/yeast CAN cause symptoms just like those of Lyme Disease. It is very serious. Coconut oil, garlic, onions are foods that help with candida.
Probiotics are also very important. High dose probiotics, like Theralac, Ultra Flora, and VSL#3.
I would try to treat the candida and see what happens. There are good candida cleanses you can use in addition to what I mentioned above. I'm really surprised your LLMD didn't prescribe Nystatin or Diflucan if he thinks these symptoms are yeast related.
Yeast can also cause a sinus infection that is not bacterial.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am sorry to hear you're still feeling sick. I am so sick and tired of MD's. The only one who I like is the LLMD we used to see. The rest of them can't think outside of any box, no matter how small.
When I was taking my daughter from doctor to doctor trying to figure out why she was so sick, we ended up at a Naturopath. What a refreshing way to be examined, diagnosed and treated!
Not sure if you have been seen by a naturopath or not, but if not, you may want to. Instead of treating 'chronic sinus' issues they will do a thorough examination and blood work. They will treat the cause of your symptoms rather than only the symptoms themselves.
Systemic candida, food allergies, gluten intolerance, adrenal fatigue, iron deficiency, hormone inbalance are just a few of the things that could be going on with you that could cause your symptoms.
I am certainly not a medical professional of any type, just a mom who's been there, done that in trying to get her daughter well.
Good luck to you LG23. I hope that you find the answers to your questions soon and that you will be on the path to wellness.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
"I never saw a tick, but it was late october and my friend said he THOUGHT he saw a tick on my vagina when I was peeing in an alley, although he wasnt sure. I never found the tick.."
I'm sorry but it's hard to imagine this happening. I'm not laughing I just don't understand it.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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[ 11-06-2010, 04:42 PM: Message edited by: Lymetoo ]
Posts: 995 | From somewhere out there | Registered: Oct 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
What about Babesia, bartonella or Ehrlichia?
Also, Vitamin D deficiency?
I would go with the doctor's recommendation on the no sugar, no white flour diet, Also, no sweeteners. Get used water, iced tea and black coffee. I did this and I am amazed at how much better I feel.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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i was told by the lyme doctor that he thinks i have candida of the intestine. yeast overgrowth, typically caused by too much antibiotics use and wants me to eat no sugar or bread for a month and see how i feel. im skeptical
I was thinking the same thing. You need to take it seriously.
I think it's very possible you have Lyme also. Band 23 and 41 are important, esp on the IgM.
The IgM is more often positive in chronic Lyme...but it can be either to be positive.
DIET, DIET, DIET is the key. Then, be sure to follow the 5 step plan outlined below. It was developed by my naturopath. It works.
"Successful control and elminiation of a Candida Albicans overgrowth requires a multifaceted program as described below. Failure to follow ALL the steps simultaneously will result in slow progress and will lengthen healing time significantly. The program should be tailored to the individual and must balance the need to eliminate the Candida and deprive it of its food source while insuring proper nutrition for the individual."
Five Steps to Candida Elimination:
1. You must starve it into submission by eliminating its food source.
2. You must kill it with anti-fungal herbs and supplements. [e.g....garlic, onion, caprylic acid, Pau D'Arco capsules or tea, clove, grapefruit seed extract, olive leaf extract, oil of oregano, tea tree oil, Echinacea, Goldenseal, black walnut, MSM, barberry root, uva ursi, neem leaf, biotin]
3. You must reestablish the proper balance and quantity of probiotic bacteria in the digestive tract. [...multi-strain lactobacillus acidophilus and bifidus capsules with FOS should be taken between meals to maximize repopulation of the digestive tract by beneficial bacteria.]
4. You must reestablish proper levels of all B vitamins (yeast free) and utilize other immune enhancing supplements to boost immune system function. [e.g ... B complex vitamins (yeast free), biotin, beta 1-3 glucan, colostrum, maitake mushroom, vitamins A, C, E, zinc and selenium]
5. You must cleanse and heal the digestive tract to promote proper elimination of toxins and Candida and assimilation of nutrients. [e.g...chlorophyll, MSM, omega 3 fatty acids found in flax seed and salmon oils, GLA found in borage, evening primrose and black currant oils. Pantothenic acid, digestive enzymes between meals]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Lymegal said: my antibody results came back just equivocal twice, i demanded a western blot
Is your LLMD ILADS trained and recommended by other patients?
I ask because LLMD's do not usually even run ELISA because they are so unreliable. Also, these statements are odd:
"I did test for it the next day and when the results came back it came back as a very recent infection."
It takes weeks for antibodies to form. One would expect a negative test the day after a bite. My understanding is that Lyme patients can have an IgM positive only and still have had lyme for a long time. IgG and IgM don't mean the same with lyme as they do with other infections.
According to one LLMD http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077 ------------ Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
--------------------------
lymegal wrote: I never saw a rash, I never saw a tick
That is not unusual. I believe about 50% get a rash. The nymphs can be the size of a pin head and in places where you would not see them.
To a question about why your doctor thought you didn't have active lyme you responded:
Well I had it last year. and from the first test i had done it only showed one igm antibody and no igg. therefore it was caught very early it seemed
If this is the reason that your doctor gave for thinking that you don't have active lymem, I'd really wonder about his/her expertise. Lyme is a clinical diagnosis anyway because the tests are unreliable and you can't rely on the standard meaning of IgG and IgM.
Most LLMD's will do a very good workup to make sure that there are no other reasons for your symptoms. If none are found, a trial of abx might be in order.
As others have said, yeast could also be part of the picture but I'm wondering if you can think of any reason why yeast would suddenly flair?
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
quote:Originally posted by lymegal23: [qb] I was peeing in a alley while out with friends in the city. ....
Maybe if he was playing a joke by taking a picture, he was also fooling you with the comment about the tick..
I have to admit this whole thing is a bit unusual.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hate to the be the one to suggest that, in addition to stopping sugar and bread, cutting out alcohol is also very important. (As I recall that is why you had to go to the alley as the bar was too crowded).
So, if you do go out, be sure to drink only fancy water with a spritz & wedge of lemon or lime and take a a couple packets of stevia with you. That can work, hot or cold. Maybe top with a few sprigs of fresh mint.
For snacks when you are out, go for the nuts (or take your own with you).
You may or may not have lyme but, either way, it's very important to have a clean diet so you can start to figure out the best way to proceed.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Seriously, I cut out alcohol and sugars immediately when this all hit the pits, and I started taking Olive Leaf Extract. I was basically a billboard for that stuff on this forum, cause I was feeling better within weeks (although I still had and have a long way to go).
Today, 10 months later, I'm starting to see the connection. The immune system gets weakened by an infection (Lyme), and you add a fungal, parasitic or yeast infection to the mix...It's havoc.
But that's why systemic Candida is supposedly only harmful to those with compromised immune systems. Because, candida already lives inside you, it's an overgrowth that becomes dangerous. But, if your immune system was healthy it would keep itself in check?
Well, why do I suffer from a mold allergy? That seems directly related to a fungal infection, and I have sinus problems, as well as a bunch of other stuff.
And I can say this, being on ABX for 10 months now. There are certain points in my treatment when I truly doubted the ABX was the real reason I was getting better in the first place. Don't get me wrong, I had herxes when I started certain ones -- especially Rifampin. But, nothing has immediately solved my sinus issues.
However, through this period where I've been on a mold-elimation diet and alcohol free, mixed with probiotics, garlic, OLE and other supplements...it is SLOWLY getting better.
Did not mean to derail your topic, but this seems so well connected in my case it's making me excited. I definitely believed Lyme and these other issues are interconnected!
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