littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
All these posts about people saying they did not have Lyme of course make people wonder.
Are there any ways to tell without a doubt that we are fighting Lyme?
Like for instance if you herx, is that a positive it is Lyme? My body goes into kill mode when I am on the Flagyl. Attacking my joints on the right side of my body. Does that mean it's definitely Lyme.
can any other disease or condition cause a person to herx in such a way on abx?
Are there any other tall tail signs that Lyme is what it is and that's what we have? Any ideas out there.
posted
Herxing is a good sign. altho do you herx on anything else besides flagyl?
honestly the people who say they DONT have lyme dont really truely know that. maybe they arent feeling symptoms yet. maybe it went dormant. honestly in my eyes having antibodies to BB means something
also. some things you can take into consideration. did you have your cd 57 checked? tends to be low in lyme patients. is your magnesium levels low? once again tends to happen in lyme patients.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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onbam
Unregistered
posted
A positive blood test is generally a good indicator.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I think it's always more than *just* Lyme in a chronic Lyme patient.
Treating Lyme and coinfections was not adequate for me. I also treated parasites, emotional trauma, KPU, mold exposure, etc. Why is it that one person who gets bitten by an infected tick gets chronically ill and another doesn't? That is the big question and ultimately what needs to be treated.
Yes, infections have to be beat down. For me, I also had to treat the deficiencies associated with KPU. Then my body was stronger and could fight the disease on its own.
What I found was that my Lyme Disease was like a dandelion. When I picked off all the leaves, they just grew back. I had to get to the root of the issue. That's why abx isn't enough for all of us.
I was IgG positive with 8 bands. I herxed on meds. I did have Lyme, but there was more to treat than *just* Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
I agree with sixgoofykids.
It seems as though people with chronic Lyme disease are often co-infected with a combination of other chronic infections or pathogens such as parasites, toxic mold, bartonella, babesia, EBV, HHV-6, XMRV, CPN, enteroviruses and etc.
Due to that, Dr. H has proposed that what some LLMD's are calling chronic Lyme Disease is really a Multiple Chronic Infectious Disease Syndrome (MCIDS). So, the condition known as chronic Lyme Disease may not actually be caused by just one pathogen but rather it may be caused by a combination of pathogens (bacteria, viruses, parasites, toxic mold/fungi, yeast and protozoa).
So, often the Lyme disease causing pathogen may not be the only pathogen that your body is harboring.
Plus, some chronic Lyme Disease patients may also have elevated levels of various toxins such as heavy metals. As well as various nutritional deficiencies and food sensitivities.
So, in my opinion, what's being labeled as "Chronic Lyme Disease" is in many cases caused by more than just the Lyme Disease causing bacteria (Borrelia burgdorferi).
Posts: 1223 | From U.S.A | Registered: Jul 2007
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quote:Originally posted by littlebit27: All these posts about people saying they did not have Lyme of course make people wonder.
Are there any ways to tell without a doubt that we are fighting Lyme?
Like for instance if you herx, is that a positive it is Lyme? My body goes into kill mode when I am on the Flagyl. Attacking my joints on the right side of my body. Does that mean it's definitely Lyme.
can any other disease or condition cause a person to herx in such a way on abx?
Are there any other tall tail signs that Lyme is what it is and that's what we have? Any ideas out there.
It might help to ease some minds.
Posts: 2 | From Madison, Wisconsin | Registered: Dec 2010
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posted
I was told that there is only one definitive way to tell if it is Lyme or not and that is having a spinal tap, which seems alittle drastic to me.
Also a question to all, > I have been talking to Mike and he thought I should post the question. > Has anyone had severe shortness of breath, or a paralyzed diaphragm or > phrenic nerve? > They said his diaphragm is not working at all and is atrophied and his > phrenic nerve is dead. > My hubby was tested positive for Lyme by IgeneX with 4 positive bands > and 1 indeterminate one, and we have been treating him with doxy & > amox. but he now has a cold so his doc prescribed Z pak, his breathing > was worse yesterday, so as Mike pointed out, maybe that is the herx??????? > He has been diagnosed with ALS, by doctors here and yes, by Mayo Clinic. > I just don't want to waste his time treating Lyme---IF there is NO hope. > Does anyone have any information for me?? > Thanks so much for everyone on this board. > Dixie
posted
Dixie, I understand that a spinal tap will find spirochetes only approximately 13% of the time. Too elusive a test.
I don't know about the phrenic nerve specifically, just that Lyme can affect any nerve in the body.
If your husband has four positive IGeneX bands, he has Lyme. You both need to stay the course and see what's going to treat him. Others will be along here to help.
ALS patients can get better. The incoming president of ILADS beat it. That story is in Pam Weintraub's book, Cure Unknown.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I have a positive blood test and a negative spinal, so I don't think that's a very good test. If it's positive, you can be sure, but it's a very low % that get a positive PCR.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
You have band 39. Nothing but Lyme can cause to show up. Pretty good indicator! I think 83-93 are extremely specific as well, but don't quote me on it.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I herx on the other meds too...but NOT like flagyl, lol!!!
I had to stop treating since I couldn't control the pain. Because of the herxing from doxy-So yes, I herx...lol.
I guess I just worry, I'm broke as it is, and I would HATE to waste money. But I pretty much "know" I have Lyme. I just like to second guess myself lol...
That's started within the last few years, where I constantly second guess myself.
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
littlebit--I have begun the second guessing too. It has about made my head explode.
I don't normally herx a lot but I can tell you that the drugs and supplement protocol has helped. If it wasn't for the babs treatment and humaworm, I'd still be miserable. So...it's not always lyme, but if you've been bit by a tick, it's probably something. It's not surprising that mosquitoes, flies, flees, gnats, whatever, is causing problems.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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