phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Need your help.. I will be seeing a new doctor Mar. 7 and when I tell my symptoms I don't want to get "that look"..
This doctor is not a LLMD as I have been seeing a LLMD for over a year and she is confused because I don't seem to have the classic symptoms..
Most of my test are negative except for one positive band of Igm 18, bart and babs are negative, no co-infections etc all through Igenex. Oh, high positive ANA, C-reactive Protein elevated.. everything else normal as I was told.
I do not have a reagular MD so going to get established, he is my husbands doctor and seems lyme friendly as I have spoken to him about me..
Ok, symptoms.. Sensitive to most meds, MCS, Crying almost everyday, ears ringing 24/7,off balance, ear aches, sinus issues, there are days I feel somewhat normal and then days its hard for me to get out of bed.. some days I feel like I am dying and can't explain how I feel Indigestion, fatigue, chills, night sweats, insomina, ... my symptoms are like a roller coaster they come and go.. I am sure there are more but those are the biggies.. Depression and anxiety....these are biggies.. There are times I am feeling ok and try to get out and out of the blue I will have a spell and have to get home and lie down. Its not a low blood sugar attack, its like my body is shutting down.. Can not describe how I feel.. Its like all the life has been sucked out of me..
Well, if you have read this far, tks .. I need help in putting this into words for the doctor to understand..
I feel sure its lyme as my test a year ago I had a 23 Igm positive.. Have tried antibiotics but have to stop because of reactions and the one I can tk gives me horrible indigestion .. I am now on meds for that.. so hoping I can get back on abx or this doctor can help...
Thanks for any input...
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Phyl, I overlooked that you have a band 23. That they say is a positive for Lyme. The mold thing is a series of tests for your body and your house. I think mold is a factor for a lot of us people that have Lyme. It's like another coinfection. If you are interested in learning more read "Surviving Mold" by Dr. Richie Shoemaker.
Posts: 845 | From Northeast | Registered: May 2011
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Diagnosing Lyme Disease (&/or whatever else is going on)
Includes a symptom check-list; articles; consideration of differential diagnoses.
Scroll way down to TIMACA's thread on "OTHER TESTS" as her collection is very important for what else to consider, such as Cpn, HHV-6, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You need to find out, then, phyl! You really sound like you have one or more coinfections that are not showing up.
PPI's.. prilosec, nexium, etc
Get on good probiotics or you will be sorry (regarding stomach issues).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by phyl6648: high positive ANA, C-reactive Protein elevated..
Ok, symptoms.. Sensitive to most meds, MCS, Crying almost everyday, ears ringing 24/7, off balance, ear aches, sinus issues, some days I feel like I am dying and can't explain how I feel Indigestion, fatigue, chills, night sweats, insomina, Depression and anxiety....these are biggies..
out of the blue I will have a spell and have to get home and lie down.
. Yeah, it's probably Lyme, but you can do things to reduce some of your symptoms.
The elevated C-reactive protein shows that you have systemic (bodywide) inflammation, which is the body's immune response to infection.
There are medications like Naltrexone that reduce inflammmation, and also a number of foods and over the counter supplements that help.
Systemic enzymes are prescribed by physicians in Europe and are available over the counter in the U.S. Taken in high enough doses, they can clear up sinus issues, reduce inner ear problems and headaches, and relieve body and joint pain.
Fish oil is a source of Omega 3's, which reduce inflammation and improve bloodflow to the brain and the body.
I have been taking fish oil with a high ratio of EPA, and I notice the headaches and aches and pains are less when I am on it, and get worse when I go off. The same with systemic enzymes...when I ran out, the pain became miserable.
Antioxidants reduce inflammation. Fresh fruits and vegetables are good sources and you can get many supplements too.
The night sweats sound like Babesia, which many here can advise you on. You might have a strain of it that the labs cannot test for.
So, you have four weeks before your doctor appointment. That's enough time to try magnesium and fish oil and see which symptoms improve.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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phyl6648
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Member # 28522
posted
Thanks Carol and Lymetoo, I am taking PPI for the indigestion.. along with mylanta till it kicks in. Carol before the indigestion got so bad I was taking fish oil, magnesium, d3, b12, vit.c and more. Its when I start all these supplements the indigestion gets bad.
Maybe the PPI will help and getting a better probotic.. Then will start back on one or two supplement at a time .. Till I see the doctor..
Posts: 1058 | From VA | Registered: Oct 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
Improve circulation in the inner ear Recommended by ear doctors as a nutritional supplement to their patients with Menieres Disease
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Anyone who is uncertain about their lyme diagnosis ought to consider investing in the new culture test.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Night sweats, anxiety, off-balance are classic symptoms for babesia. The list reads to me more like babs than lyme, though it's entirely possible you have both.
As others have said, don't let the negative test results stop you - there are like 20 species of babs and only tests for two.
Posts: 146 | From Maine | Registered: Aug 2011
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posted
FWIW... I can't tolerate Vit C .. at all. I noticed that is one thing you added.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
It could be a terrible sinus infection......
I had most symptoms..they saw nothing in blood or x=ray',small cloudy spot. Off hand ENT mentioned flush, then said no,,,
Kept asking doctor to FLUSH sinuses, it was done ,reluctantly by a ENT 30 years ago..and after that I wasn't sick for 8 years.. . Fast forward,,,in the middle of this being ill and nobody knowing what was going on...except for usual story,head
I had more sinus issues,,,kept asking for another flush, nothing was showing in blood or x-ray,,,,but symptoms etc there She finally OK'd surgery for deviated septum and to take a look
She found three BAD infections in my sinuses . Had to scrape inside cheeks etc....some in forhead between brows.
That was 08 , a few years into sickness.... but that part was better.
Also ,when this happened she put me on Doxy.. I called said didn't seem like kicking in,,she then did Rifampin..
So out of the blue I did a bit of Doxy then Rifampin real close ..In 24 hours I could feel the old normal coming back....
That's when I KNEW something was going on that had a cure .....then finally THIS Aug. was diagnosed LD and Co's,
I was so hoping not ,but a least there was a name....many wrong medical thing's had been been done
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I have seen an ENT many times and each time he says Sinus Infection , Bacterial even though my test and x rays are all negative..
He wanted me on 3 months of Clindamycin and honestly after the 4th day I began to feel better but then the indigesstion set in.
I think if I could have stayed on it well maybe ??
Oh I do remember the llmd said I did have some type of infection but she didn't know what kind...
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
p.s. I notice my head symptoms are always worse when the weather is going to change, rain/snow etc..
I do have a tooth that I had a root canal on it was after that my symptoms seem to get worse but the dentist says the tooth is ok.. Guess I am grasping at straws..
Posts: 1058 | From VA | Registered: Oct 2010
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jackie51
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Member # 14233
posted
Your life depends on a clinical diagnosis. Blood tests are worthless for the most part. I would say you have the classic three: Babs, Bart, Lyme. It's possible you have mycoplasma and brucella too. But, I have no idea of your health and family history, so I'm just guessing based on the symptoms.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I am a Pharmacist and if you have never been instructed about the nighttime dose of medication, you should not take Clindamycin, Doxycycline, or Metronidazole within 1 hour of lying down. It increases the likelyhood of developing of gastritis.
Posts: 1 | From New Hampshire | Registered: Feb 2012
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posted
Thanks Keebler
Posts: 305 | From United States | Registered: Nov 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks to each for all your help..
Vipermom, tks. I always sit up an hour or so after taking any meds or eating ..
Still feeling crazy in the head, its like it comes on all of a sudden I wish I could describe it .. I woke up this morning thinking its not going to be a bad day . Up about an hour and then wham, the head feeling, weakness as if I don't lie down I am going to fall down. Lying down helps some .. Ck b/s and b/p all ok.. I so wish I could figure out the head thing..
I went with hubby yesterday for his cardic rehab and a class.. Fixed dinner and had a good day and evening.. Well, for me that is. That is why my family doesn't get it.. Up one day and down the next.. Well neither do I..
Sure hope the new doctor can help..
Will let you know
Posts: 1058 | From VA | Registered: Oct 2010
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
A visual acuity test you can take online for mold. Mold isn't the only reason one might fail it however. Can just be neurological lyme.
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