posted
Can you please post if you had a positive IgG western Blot ONLY.. I am trying to do some research on this.
I have a positive IgG western Blot and only ONE IND band on my IgM... This has greatly disturbed me for some reason as I am having a hard time beliveing I have Lyme (for many reasons)
ONE... Had tick attachment at 12 years of age, no rash no symptoms... Went on to have a very normal life and barely ever sick until I became pregnant and gave birth to my daughter in 2007. I was not rebitten in those years.
If my immune system was strong enough to keep a so called "dormant" infection all these years.. WHY oh WHY would I get serisouly ILL from having a baby?? If I even have lyme
I test negative for all co-infections (through quest) but my son has tested positive through Quest.
Maybe I DO just have an autoimmune disease...
IgG (yes I ahve read Dr C's explaination)is just showing EXPOSURE to the borrelia, and not indicitive of ACTIVE INFECTION.. I have been told that by 2 LLd's.... So it is not enough to say I DO have lyme by IgG wb alone.
Maybe I JUST have an inflammatory illness that is Mimicking lyme symptoms and my IgG wb is just there from my previous exposure. (seein as I have MAJORLY HIGH inflammatory markers)
I dont want to be on all these abx if I in fact DO NOT have lyme especially because I will be starting IV.
I need to be sure of what is happening to me
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Lymeorsomething
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Hi, some say IGG is indicative of persistent infection. If you go to the Igenex website, I believe they mention that IGG positive can be seen as a chronic infection.
Lyme is not typical in that both IGG pos and IGM pos can be interpreted as chronic or persistent in conjunction with symptoms...
I was very much like you--never bothered by colds or sickness my whole life. I've exercised since my teenage years (I'm now 37). I was like a piece of iron, yet once that lyme was able to get a foothold following a mono infection I haven't been right since (almost 2 yrs)...
Stress is an opportunity for the bacteria and they take it. In my case, mono opened a window so-to-speak. Perhaps for you it was child birth...
Don't discount the complexity of lyme until you at least do more testing to look at other possible causes of your illness, including viral elements, hormone, etc....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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lymebytes
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posted
My son had only a positive IgG. At the time he was tested it was upon my insistence, since my husband and I had come up positive for LD.
My ILADS LLMD (and not all LLMD's think this way)would not treat him based on an IgG positive WB because he had no symptoms at the time.
IgG can mean older exposure or longer infection really.
If you are symptomatic - then you need treatment.
Do not base your treatment on the test results, treatment is only based on how you feel.
Hoosiers51
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posted
I also only had a positive IgG, Shandy. You know you had Lyme at some point in your life. I think you just need to take a chance and see if these meds will help you, or if they produce a Herx that reminds you of Lyme.
Lymeorsomething----I was just like you....I got really really sick after a mono infection, after having Lyme dormant for years and years!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I never had lyme or lyme symptoms EVER even after having tick attachment at age 12... I was an active and very fit person like Lymeorsomething all my life....
Gym 5 days a week, worked, went to school, had acting jobs, took care of my son, and had time to party on the weekend... NEVER felt bad even after an all nighter drinking till 5am.., always had energy for more.. I could drive to NYC in the am and stay all night and drive home the next day without any sleep and be perfectly fine...
I give birth and my body literlly gives up on me and now I am seriouly ill.... makes NO sense
I dont have reactions to any abx.. no herx symptoms or feeling better.
Lymebytes--I will be reading over that link.. Thank you!!
I have had my hormones tested everything seemes fine except low DHEA, No Virus's, but VERY High Inflammatory marker, RF and did have a Positive ANA that is now negative, High WBC's and Neutrophils, and sometimes elevated LFT's
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Hoosiers51
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Shandy, it could be Lyme, it could not be.
I want you to know that it is possible that it is, though. Mine DEFINITELY came back from years ago. When I was first treating, I did get worse, but they weren't normal Herxes.
Mepron is what helped me realize I did, in fact, have tick borne diseases, because I Herxed on it (like, a "real' Herx with weird things popping up). Maybe for you it will just take finding the right meds before you see results.
I will probably be on Lymechat tonight, maybe we can throw some ideas around.
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Lymeorsomething
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I feel that the immune response of a healthy individual can keep lyme at bay sometimes until another stressor comes into play.
For me, it was mono. For others, it may be co's, child birth, another illness. Lyme can probably disseminate very quickly once the immune response is lax.
I had embedded ticks many years ago as a kid with no subsequent symptoms. Even had an embedded tick in Ireland while visiting a good 12 yrs ago...so who knows...
Hoosiers, i'm trying to do more research but some of the older lyme literature links it to mono or mono-like illness....very interesting...
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METALLlC BLUE
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posted
You have Lyme.
Dr. Burrascano and Dr. Jone's have both stated officially during LDA conferences, and Hope To Heal Lyme conferences that women who were never sick in their lives, totally asymptomatic -- who gave birth, sometimes saw an explosion of symptoms from Lyme Disease and co-infections. The consequence of hormone changes resulting in impaired immunity temporarily.
I suspect, a similar change in hormone levels occurs each month when females go through their cycle. It is likely the fact that the immune system plays a large role in shedding the lining of the uterus, and removes the tissue as though it were a foreign substance. This shift, just like in pregnancy, and removing the afterbirth, and so forth, as well as the stress of the activity of pregnancy itself, contribute to a drop in immunity temporarily which allows the invader to take new ground and advance forward.
Dr. Burrascano states that these asymptomatic women were already infected, the disease just hadn't had an opportunity to grasp hold. This would explain the IgG Western Blot, and why you were probably asymptomatic. The immune system had initially assaulted the infection, and you probably mistook the acute infection for the flu, or some other general illness that can cause fever, chills etc.
Additionally, people can often be bitten by ticks and never see them, nor have a rash. In fact this is extremely common.
Your symptoms, your history of a tick bite, your loved ones -- child and partner both have Lyme, and then there is the reaction to the antibiotics which we'll see shortly. You'll be seeing a herxheimer reaction shortly, another indicator of infection. Not to mention, you have a doctor who has seen over 12,000 patients, in 20 years of treating tick-born illness, who diagnosed you. So his experience as came into play.
A Brain SPECT scan, and a second Igenex test can be performed, now that you're on treatment. Tests will often turn positive after treatment begins. You can talk to Dr. H about that.
-------------------- 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.
I wish I felt confident in my DX but I'm not.... and I dont know why?????
I wish I could just understand all of this... I wish my brain would work right again...
Why I dont get it is beyond me.....
Thanks Mike... You are such wealth of information,,, I am just having a REALLY hard time with all of this.. understanding etc...
My fiance has not been "offically" dx'd.. kind of "unofficially" until he sees a doc (someone did tell him it is MORE than possible and to please see a doc, I will nto say who online to protect them)... Kind of hard to explain that online... LoL But he for sure has many lyme symptoms and is pretty confident that he does have it... he needs to see a doc and get on treatment.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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I edited my post after you posted again. You might want to re-read it to confirm you saw everything.
Another question, did you test through Igenex to get that positive test on the IgG, and you note in your signature that you had 2 bands IND, not one.
What were all the bands for your IgG and IgM that showed positive as well as IND.
-------------------- 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.
posted
Metallic.. I actually was just editing my post cause i read your revison!
Ok here goes...
IgG positve for 18+ 28+ 31++ 41++ 45++ 34IND 39IND
IgM Neg except 41 IND
This test was through IgeneX, all other Lyme tests through Quest were Negative as well as Co-infections.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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TerryK
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posted
I initially had 4 positive bands on IgG but my IgM was negative. An abx challenge brought my IgeneX IgM to a positive.
Unexpected, my history is different than yours but pregnancy made me VERY ill when before my pregnancy I was relatively well. I didn't get well again until after I had an illness that required several months of abx. I had a 5 year remission.
I was bitten at age 5 and was sick off and on with periods of wellness but also periods of illness for most of my life. My preganacy brought me to my knees and I was very ill for several years after that.
quote: I test negative for all co-infections (through quest) but my son has tested positive through Quest.
Positive for what? Co-infections or lyme? Anyway, the fact that your son is positive for what I assume is a TBI is very telling.
Either he has congenital lyme or he has contracted an infection since birth. You can be bitten by a nymph and not know it. Not everyone gets a rash so you can't count on that either.
I tested negative for all co-infections but it is clear that I have co-infections. I developed the bart rash (long purple streaks) during treatment with doxy and they are going away on levaquin. I have all the symptoms of babs and have had quite a response to treatment so we are certain I have it or something that responds to mepron.
As you have probably read, there are many strains of babs and bart that are not tested for. New strains are being discovered all the time. Just because you did not test positive for them does not mean that you don't have them.
You may have other infections that have not been detected. Mycoplasma, chlamydia, HHV-6, EBV and the list goes on. High IgG titers for HHV-6 could indicate an active infection. There are many things about these infections that are not necessarily known, especially in regards to the effects that they have on people who are co-infected by Bb.
As we age, our immune system changes. It is not as strong as it was during our youth. Pregnancy puts a lot of stress on our body which gives Bb a chance to take hold.
I wish I had an answer for you but I have no idea if your problem is lyme or something else. You may need to go through the list of possibilities and systematically try to determine the cause of your symptoms.
I've been looking for years for the answers to my health problems and it turns out that I have a combination of problems. For me and I venture to guess for many of us, it's not just one simple problem/solution.
Have you checked out mold/biotoxin illness, active exposure to mold, genetic issues (methylation and/or problems detoxing from biotoxins),all likely viruses, all likely co-infections, mycoplasma, parasites (worms) etc.?
In your situation, I would be very suspicious that lyme is at the bottom of your problems but I think it's likely that you have other compounding issues.
Hang in there and keep looking. Try different abx to make sure that you are hitting different strains of different infections. Keep a good diary of your response or non-response to various treatments. Keep trying to find a solution. You will find one, know that in your heart and never give up looking.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Wow, 5 posts between the time I started my last response and the time that I got it posted.
If your boyfriend likely has lyme then perhaps you have all been exposed to something in your current location?
Supposedly, Steere has said that band 18 and 28 NEVER show up in controls and band 31 is hightly specific to lyme so I don't think there is any doubt that you have been exposed to borrelia.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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My son tested + for Lyme through IgeneX and tested positive for Co's through quest.. he tested NEg for lyme through Quest.
I have been tested for EBV, CMV, Herpes virus's, all negative.. Hormones are ok except a little low on DHEA. I am being tested for HHV-6, Q fever, DLR-4 gene, etc...
So far the only blood abnormalites have been ANA, RF, very high CRP, High WBC's and Neutrophils, and elevated LFT's.... They ruled out RA because of NEG CCP test and no swelling of joints. They ruled out lupus because all the DNA tests were negative and I dont have malar rash (even though I know that doesnt REALLY matter) .... ANA is now negative and RF has gotten lower
I really dont know what else to be tested for.. They thought MS but than said NO because I didnt have brain lesions back in MAY 07.... Need another test seeing as 90% of my symptoms are neuro.
I think I will definitely get checked for molds. what other problems do you have a long with your lyme??
BTW I am only 25 had my daughter at 24...
My daughter is great!! .. but doc still wants me to get her tested... My son was bitten 5 years ago but has kind of been sick on and off since birth...
So is band 18 and 28 very specific??
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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posted
quote:
IgG positve for 18+ 28+ 31++ 41++ 45++ 34IND 39IND
IgM Neg except 41 IND
This is for IgG or IgM.
Band: 18 highly specific to borrelia Burgdorferi Lyme (Many LLMD's say if this band alone is positive, you have lyme)
Band: 28 unknown
Band: 31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
Band: 34 outer surface protein B (Osp; specific for Borrelia Burgdorfer
Band: 39 is a major protein of Bb flagellin; specific for Borrelia Burgdorferi
Band: 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
Band: 45 cross-reactive for all Borellia
Ok, so Shandy, you have three bands on your IgG which are "only" specific for Borrelia Burdorferi, so that means the probability of the other bands being caused by Borrelia Burdorferi is extremely high. Even if one or two bands were cross reactive, you still have Lyme Disease.
An IgG reactive Lyme Disease Western Blot usually means the immune system put up a fight, then failed (If symptoms of Lyme Disease are present), it also means the infection is "older" -- in other words, more than 6-12 months.
Bands 34 and 39 are labeled IND, this is clinically significant and in your case, actually postives, because of the fact that you already had a positive 18. When taken in context, this test is highly significant and supportive of a Chronic Lyme Disease diagnosis.
I agree that other factors could be involved co-infections, heavy metals, or other matters. Dr. H will test for those. If you wish to test for them through Quest, just ask everyone here what you should test for, and they'll let you know.
ANA, RF, very high CRP, High WBC's and Neutrophils, and elevated LFT's
Nearly 1/3rd of patients test positive for ANA
Nearly 1/3rd of patients test positive for RF
Elevated CRP is repeatedly documented in the scientific literature when Lyme Disease is involved.
Elevated WBC, obviously an infection (Well, not....obviously, but in context here, it's presumptive and likely)
Combined with Elevated Neutrophils, this is usually low in Chronic Lyme, but because your disease "activated", the immune system probably hasn't been suppressed completely, as evidence by the high WBC.
An elevated LFT is, again, shockingly, elevated in Lyme Disease.
What you're seeing is an elevated inflammatory response, because your body is attacking the infection now. Get another IgM Western Blot (I think you can buy just that one alone from Igenex), and you'll see it probably turns positive now.
The LFT, RA, ANA and others commonly come down when the infection is treated effectively.
-------------------- 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.
TerryK
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posted
Sorry unexpected, you posted while I was writing my last post so I didn't answer your questions.
I think the biggest issue that has been uncovered so far is the methylation cycle mutations. They keep me from being able to detox properly including environmental toxins. They also keep me from being able to deactivate viruses properly. In addition, they affect my immune system in a negative way.
I also have what is called a CBS up-regulation so I have problems with sulphur. Also have several significant mutations that cause me to have too many methyl groups and to not be able to degrade dopamine normally.
I have trouble using the normal folic acid and must use a form that my body doesn't have to convert before it can be used. Also have a huge problem with B12 and must use many different forms of B12. Have way too much ammonia and thus BH4 is used up in trying to get rid of ammonia. This means that BH4 is not available for other functions. I will eventually supplement with BH4.
It is fairly complex and there are more problems but I am still learning about the work around and how it all fits together.
I seem to have the mold, spider bite, borrelia toxin problem but I'm waiting for test results. My sister tested positive and my LLMD feels certain that it is an issue for me as well.
We have a mold problem in our house which I am working on.
I recently found out from another doctor that I have a mycoplasma and chlymadia problem.
I have a lead and mercury problem according to tests.
It can be overwhelming but I am taking it one step at a time.
I have had improvement since I started the methylation cycle supplements. I'm also working on my krebs cycle since an organic acid test showed that I have what appears to be some significant problems with that.
Check out Dr. Amy Yasko's work for the methylation cycle issues. My LLMD found this for me while at the same time, my sister's doctor (non-LLMD) found that she also has these problems.
None of these are the main reason why I'm sick but combined they seem to explain a great deal.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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METALLlC BLUE
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posted
Erica wanted to also tell you that her test through Igenex was:
IgM - Negative
IgG - 31 and 39 IND, and she had two other bands, one of which was 41, and the other she can't remember.
-------------------- 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.
posted
Oh yeah my CD-57 is 43, but I know that test is questionable.. Dr H doesnt use it.
My WBC's are all over the place.. they will be normal and than they will be high and than back to normal, but have never been low... I know this seems uncommon for lyme becasue you usually see lowered WBC's and Neuts...
My ANA is now negative and my RF went from 114 to 76
My HS-CRP is what keeps rising higher and higher now to a whopping 33.7... High end of range is 3.. this is a concern.
I so far have NOT tested positive for Virus's except an old ebv infection with a low titre... I had Mono at 14. They were not concerned about the EBV at all.
I thought most lymies also had HIGH EBV titres???
They want to test me for metals/saliva etc... but I cannot afford all these tests.
So Erica's tests was negative on both IgG and IgM???
So I think when I get the money... just for my own sanity, I will get the WB done again.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
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quote:Oh yeah my CD-57 is 43, but I know that test is questionable.. Dr H doesnt use it.
In my opinion the CD-57 from Labcorp is accurate. Mine was 85. My symptoms are moderate, but still disabling. I have a co-infection. I just found out.
quote: I know this seems uncommon for lyme becasue you usually see lowered WBC's and Neuts.
My WBC and Neutrophils have always been normal. WBC and Blood panels aren't of much help with Chronic Lyme Disease. The numbers fluctuate so randomly and rapidly.
quote: My ANA is now negative and my RF went from 114 to 76
That number will go up and down.
quote: My HS-CRP is what keeps rising higher and higher now to a whopping 33.7... High end of range is 3.. this is a concern.
This is why I said you're so sick. Your immune system had control of this infection. You had a very strong immune system. The pregnancy lowered your immunity temporarily, the infection immediately took advantage, and then when your immune system rebounded, it reacted dramatically.
The immune system reacted with a violent thrust once the pregnancy had finalized, and became hostile to the infection which had spread during the vulnerable period, but the disease had already disseminated by then.
Now your body should actually be starting to produce IgM antibodies, with antibiotic therapy, since you still have a very strong inflammatory response.
Here is some information on HS-CRP: (High sensitivity C-Reactive Protein)
CRP is a member of the class of acute phase reactants as its levels rise dramatically during inflammatory processes occurring in the body. This increment is due to a rise in the plasma concentration of IL-6, which is produced predominantly by macrophages[1] as well as adipocytes.[2] CRP binds to phosphorylcholine on microbes. It is thought to assist in complement binding to foreign and damaged cells and enhances phagocytosis by macrophages, which express a receptor for CRP. It is also believed to play an important role in innate immunity, as an early defense system against infections.
quote: I so far have NOT tested positive for Virus's except an old ebv infection with a low titre... I had Mono at 14. They were not concerned about the EBV at all.
EBV titers aren't high in all patients. My Titer was low. I had previous exposure, but it hasn't been a problem. Erica's IGG is extremely high.
quote: I thought most lymies also had HIGH EBV titres???
I'd say about 50% have strong titers to EBV.
quote: They want to test me for metals/saliva etc... but I cannot afford all these tests.
It's something you can do later, or you can just get right to the point and treat for it. I personally wouldn't bother testing and would just treat. The supplement to use is Chelex Xmogen, 2-4 capsules every third night. Dr. H can advise on that when it's time. It's safe to use when used correctly and it's cheap. It'll work.
quote: So Erica's tests was negative on both IgG and IgM???
Yes, it's extremely common, just like it's very common for patients to test negative on mainstream laboratory testing like Quest and Labcorp.
quote: So I think when I get the money... just for my own sanity, I will get the WB done again.
See the problem is, if you're only worried about Lyme, you need to realize that co-infections are even more serious, and those tests are even more significantly inaccurate than Lyme Disease. So, either way, Dr. H believes you have Babesia and Bartonella or (BLO). He wouldn't be treating you with those antibiotics you've told me about (Malarone, Bactrim, etc) if he wasn't sure.
Those infections are as serious as Lyme Disease. Babesia itself is deadly in acute cases. It's been known to kill cattle in Europe.
So, the point being, having a positive test really will only appease you, but no matter what you do, there will always be another doubt, another test, and another criticism.
Let me give an example.
I was tested through Lifelabs, I had 41kd on my IGG, that was it. I sad "Hey, that "could" be Lyme, and someone said "It could be anything."
So then I got a Brain SPECT scan, and 50-70% hypoperfusion was observed throughout the brain. Again, I said "Hey, that could be Lyme" and someone else said "It could be anything."
I said "I have all the symptoms, over 100 in total, that "could be Lyme." Someone else said "It could be anything."
So I got retested through Quest, and Band 41 and 45 showed up on the IGG, and I said "Hey, I had 41 and now I have 45, it could be Lyme" and someone else said "It could be cross reactive, it could be anything."
So, I got a Neuropsychiatric examination, and the exam concluded the results were consistent with temporal lobe impairment (I also had frontal and pre-frontal lobe impairment) but the test demonstrated problems across the board in executive function, visual spatial memory, sequencing memory, auditory, visual, Mathematics etc." -- So I said "Hey, that's consistent with the Brain SPECT scan, the professionaly who was testing me said Chronic Lyme Disease can cause that, "Maybe it's Lyme" and someone said "Anything could cause that."
So, I began treatment for Lyme, just incase I was right. I had a strong Herxheimer reaction, and in the 6th month, I began to improvement, and I said "Hey, this could be Lyme Disease, I had a herxheimer reaction and now I'm seeing improvement around the time my doctor said I would, and someone else said" The antibiotics could be antiinflammatory, or it could be a different infection. It's probably auto-immune."
So, I got tested for auto-immunity, all tests were negative, and I never responded positively to any antiinflammatory prior to diagnosis, includind Prednisone. In-fact, I got severely worse. I said "Hey, Lyme Disease patients get debilitated and much worse after Prednisone therapy." And someone else said "Maybe you needed a higher dose."
So I got more testing, and went through Igenex. I had around 10 bands on my IgM, and 4 bands on my IgG, and I said "I have Lyme, see? See?! Someone else sure enough was there to say "It's not a reputable lab, ...it's a false positive."
So, I showed them the certifications for the lab, which include CLIA, Medicare (CMS), as well as Public Health Accreditation in MD, NY, PA, FL, CA. They also have CAP participation certification.
I said "Oh, so they aren't credible?" And sure enough they said "Oh well that's not Massachusetts on that list."
So I said it doesn't have to be, Massachusetts accepts CMS, and they said "Well....that may be true, but I don't" So I pull out the inspection reports, and show the numbers, which confirm that Igenex has been investigated about 7-8 times, and every single time they were scrutinized and they passed without a problem.
They had nothing left to say.....But then, I had a CD-57 test done, and it was an 85. My own LLMD said "Well maybe it's not Lyme Disease, maybe it's something else, and that's why you aren't getting better. So I pulled out the Igenex results and said "Oh yeah? BANG!!!!!!!! It's an active infection, and yes it's absolute borrelia burgdorferi, it lines up with my other WB's from other laboratories.
So I said "I think I have a co-infection." and some said "Well....your tests are negative, so no."
So I had a Fry Lab done, and it came back positive, and someone said "Well they aren't credible.... Oh boy, here we go again."
So you see, you'll always have doubts, because a lot of the testing is either new, indirect, circumstantial, or clinical.
-------------------- 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.
I am a newbie and just had no idea the WHOLE process is full of uncertainty like that. What other disease causes patients to constantly have to doubt and question their positive tests??
I am afraid that if things don't change politically, it will never get better for us.
I know none of the numerous doctors that I have seen locally would ever admit that I have lyme disease even with my test having so many bands positive. One even raised his voice telling me that "you don't have lyme disease" as he is waving my cdc positive igenex test around in his hand.
I thought (naively) that my battles like that were over, I guess not.
I just keep coming back to the fact that the antibiotics are the ONLY thing that has brought me back from illness. I am not saying that I am cured or 100%, but a definite improvement.
That is what I intend to go by. All of the "doubters" don't have to live in my body like I do.
Thanks for writing all of that, it has given me perspective that I will probably need in the coming years.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Wow Metallic Blue,
I am a newbie and just had no idea the WHOLE process is full of uncertainty like that. What other disease causes patients to constantly have to doubt and question their positive tests??
Unfortunately there are quite a few diseases out there that have inadequate testing. Co-infections obviously are a big problem, and there are a long list of disease (Think autoimmune...) that have almost no testing, because they don't know what's causing it.
quote: I am afraid that if things don't change politically, it will never get better for us.
Thinks are changing. PM me, I'll give you something. I also suggest you purchase the book Cure Unknown. It'll be one of the most important books you read, given your situation. Here in the northeast, we've (The patients and advocates) have gone to war with the IDSA and the politicians. We're going to win this, guaranteed, so it'll have far reaching impact across the country eventually.
quote: I know none of the numerous doctors that I have seen locally would ever admit that I have lyme disease even with my test having so many bands positive. One even raised his voice telling me that "you don't have lyme disease" as he is waving my cdc positive igenex test around in his hand.
He's an incompetent. He should know better.
quote: I thought (naively) that my battles like that were over, I guess not.
I just keep coming back to the fact that the antibiotics are the ONLY thing that has brought me back from illness. I am not saying that I am cured or 100%, but a definite improvement.
There are other tools besides antibiotics that would likely work for you. If you're willing to combine therapies, consider some of the real well known tools that patients are using, such as Rife Machines, Zhang Protocol, Cowden, or combinations of other herbal products that we've seen consistently show results, such as Olive Leaf Extract, Grapefruit Seed Extract, and of course exercise, and detoxification. These are all very real, and very useful tools. Different combinations are necessary for different patients.
If you have co-infections, you take one direction, if you only have Lyme, you take another. If you have both, or some unknowns -- you take all!
quote: That is what I intend to go by. All of the "doubters" don't have to live in my body like I do.
Thanks for writing all of that, it has given me perspective that I will probably need in the coming years.
One of the best weapons I've found, is self education. Read the books available on Lyme Disease that yield high quality reviews, such as on Amazon, or here on the forum. A lot of people do recover fully, it's just that if you want to be one of them, you have to be willing to try to walk the roads they walked, and since one thing doesn't work for everyone, I recommend people choose the best tools available, combine them, and then attack.
That's what I personally think.
-------------------- 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.
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