posted
Perviously I had Stony Brook WB test results: IGM: Negative
IGG: IND
28 kDa
41 kDa
45 kDa
Although the doctor prescribed Abx for me to treat me as chronic lyme, I am still in doubt. Before taking Abx I asked the doctor to ordered WB from IgeneX again, and the Resutls are:
IgeneX-IGM-Result: Negative
CDC/NYS Result: Negative
41 kDa IND
IgeneX-IGG-Result: Negative
CDC/NYC-Result: Negative
31 kDa IND
39 kDa IND
41 kDa +++
45 kDa +
58 kDa +
So I'm confused, Can these rule out that I have lyme? or suggest I have lyme. After all, IgeneX says Negative. I haven't met with the doctor to discuss it yet.
Show some reactive bands, but not positive, what are the possibe causes????
can medical community give an answer? what should I do? I'm going nut about this thing, so tired.
Any opinons are appreciated.
Posts: 101 | From nowhere | Registered: Aug 2013
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[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM..
------------------------
Also this..
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all." --Dr C of MO =================================
You have a few bands that ONLY Lyme could create. Bands 31 and 39 are examples. Your LLMD will explain it all to you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeToo's reply above is right to the point.
To review other important replies from your previous threads / questions, just click onto your web name and you can see your posting history. You may want to look back over some of those links that explain why ILADS is so important and why you need an ILADS educated LLMD (not IDSA). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
IND means indicated, very lightly. Those include 31 and 39 bands in your results - very strong Lyme bands. With some treatment, you may test positive more strongly when the immune system is able to mount a stronger defense.
Posts: 13116 | From San Francisco | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
My overall result was negative also but I have Lyme.
Do not concentrate on how the test was officially read as negative or positive.
What is important is if you have positive and IND (Indeterminate)species specific (Lyme specific) bands.
Indeterminate bands are like fingerprints according to my LLMD. They may be light, but they are still the same fingerprint.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thank you all, by reading your reply, I'm starting to have joint pain. I was hoping its not Lyme but mold is causing my sickness, now seems I do have Lyme, and mold is on top of that. Thanks!
Posts: 101 | From nowhere | Registered: Aug 2013
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Most good lyme Drs would interpret that as a positive Western Blot.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is not unusual for a lyme patient to have mold illness. In fact, many start with a mold illness and then it progresses to lyme disease. It seems that this is exactly what happened in my case. I am allergic to mold.
Because of this connection, there was a speaker at the 2011 Lyme Conference (Dr. Nagy--not a lyme doctor) who discussed mold illness. My notes from her talk are below. I hope they help you.
2011 ILADS Conference
Identifying Environmental Illness & Mold Exposure in Patients with Persistent Lyme Disease
Dr. Lisa Nagy 10/29/11
The toxicity of mold is not well understood. Mold illness leads to chemical sensitivities. Many lyme patients have immune suppression/immune system damage first (due to mold, etc.) then they get lyme disease.
Usually, the cause is indoor mold from water intrusion. The key to this is a musty smell in the basement or other part of the house. A person with mold illness typically will have a white cell count of 3-4.
Mitochondrial disease: Dr. N. had this plus chemical sensitivity. Mold exposure in her home was the problem. (When she bought the house, the living room had a large, built-in aquarium in the wall complete with koi. A shed outside sheltered the aquarium. The mold from this structure was sucked into the house and sent throughout the house.) As a result, everyone in the family got Addison’s disease.
There is a $699 urine test to test for mold problems (it is a mycotoxin test).
Symptoms of a person with mold illness include: clothing tags itch them so they cut them off, bra gets too tight as they wear it (due to skin’s reaction to it)
If the mold is very toxic, you have to get rid of all of your possessions, including all clothing. It cannot be salvaged. If you wash and dry your moldy clothing at another person’s house, you will infect their dryer.
If you have this type of illness, you should prewash all new clothing.
Once a person with this problem gets away from mold, they will get sick the first 5 days (called “unshielding,“ I believe), so they must stay out of stores for those days. Don’t go shopping. She advises giving these patients oxygen during this period. She recommends 2 hours per day for 18 days.
She also advises IV nutrients if they can afford it. She advises them to spend 10 minutes in the sauna after a few weeks away from the moldy environment. If they can tolerate that, they can slowly work up to 30 minutes.
She also advises 4 grams 4 times per day of cholestyramine.
She said that Dallas has the best allergy testing. She gave the following website: EHCD.com
She advises this type of patient to build a safe bedroom to detoxify all night. They cannot drink water in plastic ever again, only in glass containers. She mentioned Mountain Valley water as coming in glass containers. Then, you carry your water with you in a small glass container throughout the day.
Regular detergent and fabric softeners make these patients sick, also air fresheners, perfume, diesel exhaust. Husbands often disbelieve that these things are making the wife sick, and the marriage suffers. Women generally show these sensitivities before men. The men just go right to severe illness and skip the sensitivities phase.
If the patient has adrenal insufficiency, they may notice that they get teary at movies and commercials that are sentimental, etc.
She mentioned giving patients DHEA, 5 mg per day for 2 weeks and then increasing the dose. This helps with anxiety.
Toxicity may now have become the most common cause of adrenal insufficiency.
These people will have dysautonomia (usually diagnosed as POTS). They will go to sleep for hours after eating. So, to avoid going to sleep at work, they will skip meals. (She had this and she did this. She also described how weak the condition made her as a practicing MD. She eventually had to stop work.) The following website explains how to treat POTS: NDRF.org She stated that dysautonomia must be treated.
She gives alpha lipoic acid to all of her patients.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Wow, thanks, sorry about the late reply. I did end up tested my then environment and it did has a toxic black mold. Moved out long time ago and felt much better now.
Posts: 101 | From nowhere | Registered: Aug 2013
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
posted
Just reread this - you have positive bands with 45+ and 58+, plus now you say you're experiencing joint pain. Time to see a Lyme doctor...
I take turmeric in capsules to reduce my joint pain. I get the powder at the health food store and dip empty 00-size capsules into it. I take one in the am and pm. You can't OD on it. My doc just told me to take more.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Lymetoo: Have you treated the Lyme disease?
No I actually didn't, after 3 years without treatment, I'm still alive. I took Minocycline for a short period of time, about 3 refills,then stopped. I don't have insurance, so can not afford to get the treatment. I took cats claw on and off for a little while. I stopped having debilitating headache a long time ago since I fixed the mold problem. Now I want to resume the treatment, by myself, without doctors guidance. I just took 3 wobenzyme N pills early this morning, and am having a headache now. I'm afraid it's the biofilm, so I took 500mg claromycin and 500mg ornidazole(like tinidazole). I'm going to order some Minocycline from International drug website, do you have any suggestion what else should I order? Thanks
Posts: 101 | From nowhere | Registered: Aug 2013
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quote:Originally posted by Robin123: Just reread this - you have positive bands with 45+ and 58+, plus now you say you're experiencing joint pain. Time to see a Lyme doctor...
I take turmeric in capsules to reduce my joint pain. I get the powder at the health food store and dip empty 00-size capsules into it. I take one in the am and pm. You can't OD on it. My doc just told me to take more.
Thanks for your help, but Probably I should make it clear that the original post was posted three years ago by me.. Due to financial reasons I didn't really get any treatment during the past three years. I was in denial I guess.. Things haven't got much worse without treatment, actually I rarely have any headache nowadays. I don't know how much damage has been done so far but if I have a choice I would resume the treatment.
Posts: 101 | From nowhere | Registered: Aug 2013
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quote:Originally posted by Robin123: Just reread this - you have positive bands with 45+ and 58+, plus now you say you're experiencing joint pain. Time to see a Lyme doctor...
I take turmeric in capsules to reduce my joint pain. I get the powder at the health food store and dip empty 00-size capsules into it. I take one in the am and pm. You can't OD on it. My doc just told me to take more.
I had been using turmerics constantly in my cooking, till I found out the turmerics spices are highly contaminated with mold/mycotoxin. How do I know? I have mold sensitivity and I can tell after so many experiments.
However, I am looking for a high potency and absorbable curcumin supplement, since I did read about the good things it can do. If you know any, please let me know, thanks very much.
Posts: 101 | From nowhere | Registered: Aug 2013
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
All of this is very complicated. My tests were boarderline, too. I'm not 100% convinced I have/had Lyme. I took antibiotics for 9 months & didn't herx or have any changes in symptoms.
I did the full Cowden protocol for about 6 months, too. What helped me the most was the anti-parasite herbals.
I started having joint pain about a year ago with onset of menopause. I never had it prior. I was watching a documentary on fluoride last night & joint pain can also be from drinking stuff with fluoride in it. It's in almost everything...
I tried tumeric & it didn't help me much. I'm not saying it will not help others, though.
It would be nice to go to an LLMD & do all the tests, take the correct drugs and supplements, move out of my apartment with mold, drink spring water out of glass jars, throw out all my stuff, etc. but who's going to pay for this?
How much does all this cost - bottom line? Maybe it's a good idea? I could just get in my car with a small suitcase & go live in a motel somewhere... Mold is everywhere... How does one get away from it?
How do you really know if Lyme is what is causing the joint problems? Other things cause joint problems, as well.
I hope I'm not confusing the issue. I go through these questions, too, packypacky... I've been diagnosed with Fibromyalgia, CFS and Lyme. I've been ill for over 20 years. It's not fun.
There have been times I got rid of most of my symptoms but they have come back. I'm trying the best I can. I guess you just have to keep trying.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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