I don't know that I have lyme disease. I tested positive for 41kd on igm/igg wester blot tests. but only that band. I googled that and seen many posts about how that's the first to show upositive for lyme. how there could be false negatives. But couldn't the antigen or antibody or protein from 41kd be a result of some other thing. for all i know it's from having Epstein Bar (mono). I tested positive for a dormant form of that...meaning I had it a while ago but the antibodies stay in your body. All I know is I've lived with Chronic Fatigue for 2 years now (been diagnosed with CFS). Used to be gym rat now walking to the mail box is exhausting. Migrain Headaches, Stomach Indigestion/IBS, HORRIBLE fatigue, joint and muscle aches, memory problems, are the top problems. Could this be another parasite. I was tested for STDs, none, For hormonal problems, none, lupus, lyme, negative. So I'm wondering if it could be another parasite that also triggers the 41kd. The problem I have with my current doc is that he only sees CFS..so he only treats CFS. If i go to a Lyme specialists...will he only want to see lyme as the possibility. I've read the treatment is antibiotics...but for parasites it's anitparasitics (which may be same thing...don't know) and some doctors treat CFS or viral problems with Antivirals... So i wonder how much of dart game it is with doctors...just throw some drug at it and see if the symptoms go away. Anyway...has anyone had similiar considerations and explored these questions with LLMD. I don't know whether an LLMD or Infectious Disease Specialist or some other specialist (like autoimmune, immunoligist, gastroentrologist, etc) is my next step.
Posts: 3 | From Harrisburg Pennsylvania | Registered: Jul 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
sparkle7
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Member # 10397
posted
There are people here who think that everything is Lyme related. I'm not so sure... It's really a tough question. I'm not sure if you have but you may want to give the abx a try. If they don't work or do anything that makes you feel better - it may be something else.
It's kind of hard to differentiate herxing from side effects, though.
From what I read, most of the testing is not accurate. It really is a trial & error sort of thing in my experience. Some people get a diagnosis, get the drugs & get on with their lives - others have more complications.
I wish there were an easier answer for all of this. Good luck.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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massman
Unregistered
posted
CFS is a large garbage can diagnosis.
Find a good LLMD in your area that can help you. There is a column here to ask for doc referrals.
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seekhelp
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Member # 15067
posted
All is Lyme. Even the heat wave must be blamed on Lyme here. lol. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
thx for the lymepa site. i don't want to discount what you all are saying. I guess my concern is similiar to that of the concern of chiropracters. I believe a chropracter can help with certain things but when they start to suggest they can adjust the spine and cure attention deficit disorder I start get a skeptical. So my concern is the same as the one I had when my doctor wanted to suggest I was depressed. I had to argue saying...I'm not emotionally depressed. I'm physically exhausted but emotionally fine except for being frustated. It's like the need to have an answer makes them think that everything can eventually be explained by "X" if it can't be explained by other things. I'm not a conspiracy theorist, i don't believe the entire medical community ignores the science but I don't doubt that many doctors aren't up to speed on diagnosing the problem. So I just want a doctor who isn't a cult leader (sorry if that offends anyone)..I want to feel comfortable that the doctor looks at the evidence and says...I believe it is this and "this" may not be lyme...it may be something else. But as you all said...it may be that I just have to trial and error with the meds. anyway..thakns
Posts: 3 | From Harrisburg Pennsylvania | Registered: Jul 2010
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posted
The Yasko protocol for CFS is a good one. I'm doing it right now. I'm not formally diagnosed with CFS, but the protocol definitely helps me. Have you tried it?
I use methyl B12 IM injections. I think Dr. Yasko calls for hydroxo now because of possible methylmercury toxicity or something. Methyl B12 makes me feel better, and that's what I'll stick with.
Haven't added SAMe yet since I am worried it may heighten my anxiety and I haven't tolerated a prescription medication that messes with my serotonin.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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I completely get your hesitancy to move in any one direction. Who knows the underlying cause of all of your symptoms? I say, find the best doctor you can. There is a great one in PA, but she has a nine month waiting list. She would address all your issues.
I am with sparkle, and don't feel that everything's lyme. I was diagnosed with CFS ten years ago. My symptoms were classic CFS symptoms with elevated viral titers. I was given antibiotics, and felt no relief. At that time it was viral.
When I cam down with these new arthritic symptoms, and various bacterial issues, it became evident that bacteria and protozoa were the cause. Antibiotics resolved the arthritis. That is what led me to antibiotics and lyme.
I am still not convinced it's lyme. However, I have been treated for toxoplasmosis (a protozoa/parasite) and babesia (a protozoa/parasite), and have improved by 50%. That is where a good LLMD will be able to know what to do first.
I also tested positive for only 41 IgG/IgM through Igenex. Did you test IND for any other bands? That is where I was pushed to consider lyme. I had IND in band 31 and 23-25, both lyme specific bands.
My LLMD, as good as she is, is not CFS or viral literate.
Posts: 964 | From san diego | Registered: Oct 2009
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TerryK
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Member # 8552
posted
To answer your question, yes, I think an ILADS trained, LLMD may well be the best doctor to help you figure out what is wrong. At least that was my experience. Not all LLMD's approach things the same way so it pays to ask other patients about their experience.
Of course not everything is lyme. In fact, even if you do have lyme, you likely have other issues that need to be dealt with because lyme does not live in a body for very long without causing all kinds of problems.
I had been tested for just about everything under the sun before I went to an LLMD. My LLMD tested me for so many other things besides lyme so that he could try to figure out how to help me. They tested for viruses, fungus, heavy metals, other infections etc. etc.. Also did an antibiotic challenge and THEN tested at the appropriate lab for lyme. Also saw how I responded to lyme treatment because lyme is a clinical diagnosis.
You can have been exposed to lyme and still, lyme may not be what is causing the majority of your symptoms right now. Maybe you don't have lyme at all but something else.
Fact is, I don't care what they call it!! I just want to get better and in all the time I was sick, (decades), the only doctor that has figured out how to get to the underlying issues is an LLMD.
Through testing and treating we found out I have a problem with mycotoxins, spider bite toxins, borrelia toxins, methylation issues, heavy metals, bartonella, borrelia, babesia, toxoplasmosis, parasites, mold exposure, fungus, viral issues and probably some things I've forgotten.
Treating those have brought me finally to a place where I want to live. Pain is down 70% and that's saying a LOT because it was all over my body and intense 24/7. Honestly, based on the fact that IM ceftriaxone is what brought the pain down so much, I think lyme really is at the bottom of why I am so sick. That said, I'm not convinced it is for everyone.
I'd say almost everyone who has chronic illness with long lists of symptoms (lyme or not), has many issues whether they know it or not.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read most of the posts - but to answer to the question in the heading: -----------------
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I agree it seems like everyone here says everything is lyme... I dont like this means of thinking.
I would be happy with band 41 haha... I think you should try atleast 9 weeks of abx then retest if nothing changes it would be up to you. If you get more bands then the diagnosis of lyme increases in potential
I tested very high in epstein barr to and also am diagnosed with cfs... For me CFS is a worse diagnosis than lyme at least with lyme there is potential for recovery.
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
I think it will depend on what type of LLMD you go to. Mine is an internal medicine, nutritionist, who uses conventional as well as alternative therapies.
He and the other doctors in his office have patients with EBV and many other health issues that are nonLyme as well as many lyme patients.
They are open minded and not centered on lyme only.
Before you make your appointment ask some questions/interview them so you'll feel you've picked the best doctor for you.
Good Luck!
Posts: 217 | From Earth | Registered: Feb 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
@ Massman. While I LOVE my chiropractor and think she's the greatest, a lot of literature in her office and other offices I have visited have just the kind of stuff that Jesse2000 is talking about.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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I can say that I have your same symptoms, but I know I have lyme. I was IGM and IGG positive by CDC criteria. Before this, I was diagnosed with CFS for over 10 years. I treated CFS every way possible, with no relief.
So, now I am trying to treat the lyme. One good thing I do like about LLMD is that they normally treat the "whole" person. Meaning parasites, hormones, viruses, and the Bb bacteria.
I don't know that treating my lyme will make my CFS any better, but I am praying it does.
Good luck to you!!
Posts: 893 | From Florida | Registered: Dec 2008
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massman
Unregistered
posted
kidsgotlyme - what then is the real cause of ADD ?
Is your chiro recommending only adjusting or are there other factors to include and consider ?
Many now seem unaware of what chiro has very effectively dealt with before. A very good example there is.....colic !
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Anyone who says that everyone here says it's always lyme is not listening!
There have been many discussions here about parasites, other bacterial infections, mold exposure, genetic issues (methylation, KPU, HLA), heavy metals, fungal infections, viruses and the list goes on. Don't underestimate these issues as causing major illness all on their own.
Most people here are not doctors nor do we have your whole medical history. We do our best to answer questions based on our experience and research. Take advice that you get here and do your own research. You are responsible for your own health and no one here can tell you without a doubt what is wrong with you.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Jesse save yourself a lot of time and see a LLMD.
My first test showed only one band-not Igenex.
After taking antibiotic of sorts for 3 mths tested Igenex after 2 1/2 years wasted it was pos.
Many have to challenge the test as I did to get enough antibodies to react with the antigens(have to kill some first) on the test...
Don't give up, it could save your life.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I had only band 41 positive on my Western Blot from Igenex. I think I had one indeterminate band.
I did test positive for the common co-infections, Babesia and Bartonella.
I'm also IgG positive for Epstein Barr, as well as several other viruses, fungi and parasites.
Lyme is delivered with many other pathogens (co-infections) and impairs the immune system to allow proliferation of other pathogens (opportunistic infections). Any good LLMD will test you for multiple infections. They don't just treat "Lyme."
Please strongly consider starting there. Your symptoms speak to Lyme, co-infections and opportunistic infections. An LLMD can treat all of these appropriately.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: CFS is a large garbage can diagnosis.
Massman - do you realize how condescending this sounds?
It's sort of like when I went to my PCP & she literally threw Zoloft samples at me. She said I was depressed when I was in pain & had no idea what was wrong with me. I wasn't depressed - I was in pain. I guess in her mind - everything other than depression was a wastebasket diagnosis...?
How about XMRV? What's up with that? How about Mycoplasmas, Gulf War Syndrome, adrenal fatigue, not to mention viruses & toxins & probably 1000s of other things...
Not every illnesses is Lyme. The symptoms of Lyme can be similar to many other illnesses. That's why it's known as "the great imitator" - just like syphilis.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I went to a CFS specialist too..because my main problem was well chronic fatigue. He listened to me for an hour and said that he thought it was Lyme Disease. I was tested and only had 41 plus some IND. He decided to treat me to see what would happen. I had one reaction at the beginning of treatment. He told me it could be a viral reaction.
I was treated for 30 months. I even eventually went to a well known Lyme doctor. He never told me I had Lyme or that I didn't have it. He tested me again a year later and still only 41. Then another year later...still only 41.
The chronic fatigue is better now 6 years later but I still have it daily to some degree. My activites are still extremely limited and I can only work part time.
Is this what I am left with. I know I never had what is called CFS because I never had many of the main symptoms of the syndrome. Just basically horrible fatigue along with some minor other symptoms.
So I am no longer in treatment and doing okay. I tried and took everything the doctors wanted me to and I still have chronic fatigue...
Posts: 343 | From North Carolina | Registered: Oct 2008
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Dientamoeba fragilis medical literature (see side bar and below) documents bloating, stomach & bowel pain, gas, mild nausea and constipation or diarrhoea as a consequence of a D.fragilis infection. Other symptoms attributed to a D.fragilis infection often include chronic fatigue, dizziness, headaches, vomiting and, weight loss.
Other symptoms reported to this site by people infected with this parasite include:
Cravings for sweets foods and carbohydrates Thick white/greenish coating on tongue Green stools Undigested foods particles in stool Shortness of breath on mild exertion Racing heart Feeing faint Inability to concentrate (foggy thinking) & depression.Also documented in medical literature are cases of colitis resulting from a Dientamoeba fragilis and/or Blastocystis hominis infection. This authors of these studies suggest routine examination of stool specimens to specifically look for these parasites in cases of ulcerative colitis with refractory symptoms.
Symptoms described in medical literature:
A survey of 255 stool samples, in which D.fragilis was the only parasite found, listed the following symptoms: Diarrhoea was reported in 58.4 % of patients, abdo.pain in 53.7%; anal pruritus (itching) 11.0%; abnormal stool (blood with mucus, loose) 9.8%, Urticaria 6.7%; flatulence 5.9%; fatigue or weakness 5.9%; eosinophilia 5.1%; alternating diarrhoea and constipation 3.9%; nausea or vomiting 3.5%; weight loss 3.1%; constipation 2.4%; belching 2.0%; tenesmus (form of constipation) 1.2%; anorexia or malaise 1.2%, other 2.0%.
( D.Fragilis: A Review with Notes on its Epidemiology, pathogenicity, mode of transmission and diagnosis. Yang & Scholten (1976) Vol 26, No.1. 16-22 The study below included fifty subjects with D.fragilis only:
Symptoms No.of subjects
%
Abdo.pain 39 78
Site: Right or left lower quadrant 15 44
Mid-epigrastric 12 35
Right or left upper quadrant 7 21
Diarrhoea 34 68
Nausea 21 42
Headache 12 24
Vomiting 11 22
Anorexia 10 20
Bloating/gas 8 16
Fever 6 12
Irritability 6 12
Pruritus 6 12
Constipation 3 6
DF: A Gastrointestinal Protozoan Infection in Adults, M.J.Spencer et al. Am.Journal of Gastro. Vol.77, No.8. 565-569. 1982
A personal story:
"My symptoms mainly included the worst stomach cramps I could imagine, bad diarrhoea, wind, gas, lethargy, fever...the works! The stomach cramps and abdominal pain were a complete nightmare" Dientamoeba fragilis sufferer (February 02)
Posts: 188 | From Germany | Registered: Feb 2009
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posted
"Lyme" is often used as an umbrella term, to encompass not only bacterial infection with Borrelia burgdorferi but also bacterial, viral, fungal and parasitical coinfections that may come from the same tick bite (or transmission at birth), as well as opportunistic infections due to Lyme & coinfections' attack on the immune system that allows dormant organisms in the body to become active, as well as complications from treatment that can be reactions to medication or its long term effects on the body.
And I didn't even mention mold, heavy metals, chemical sensitivity and food allergies, problems which people can develop due to Lyme and/or all of the above causing them to become a problem.
"Lyme disease" is not just one disease. And it, by itself, does cause a huge number of possible symptoms that affect different people in different ways.
Chronic fatigue syndrome, fibromyalgia, and various other "syndromes" are just collections of symptoms that says nothing about the cause. They can all be caused by Lyme, so their presence does not rule out Lyme being the cause.
On top of this, the CDC itself says that only 10% of Lyme cases are ever reported to them. Maybe as many as 90% of people who have tickborne illnesses do not know it for years, if ever.
It is in fact possible that "everything is Lyme," by which I mean it can explain all the symptoms in a person who has been infected. I don't mean that every person who is ill in any way has Lyme.
An LLMD is definitely the best person to tell you if you do or don't have Lyme, and what other issues may be going on. Other doctors do not know enough to say that it isn't Lyme.
I got bit by a tick and got sick with classic Lyme symptoms 10 days later. I herxed and then improved as expected when I took antibiotics. I don't doubt that I have Lyme.
My two Western Blots from Quest came back with only band 41, and my Igenex test came back with band 41, and 83-93 IND.
The reason so many people come on this site and get told they probably have Lyme is because most of them have plenty of reason to suspect it before they come on here and ask, such as a tick bite, a bullseye rash, a positive Lyme test, or typical Lyme symptoms not explained by anything else (all their lab tests may have come back normal, and they've been told that their symptoms are in their head or are mental when they're not).
A lot of people here have suffered horribly and expensively for years and years because they let themselves be persuaded that they had something else instead of tickborne illness (Lyme). Now they want to save other people from going through the same suffering by warning them to check it out early with a competent doctor, which means an LLMD.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
To answer your original question......if you can find a really good LLMD, he/she should be able to think outside the lyme box. Some LLMD's don't think everything is lyme and are willing to help you figure out what is going on. Sometimes it can be lyme plus other things! I would steer clear of any LLMD that thinks everything is lyme!
If you even suspect a little that you have LD; then I would think that treatment is warranted just to see if you react, or if antibiotics will trigger an antibody response.
I was one year into treatment when I got an IGM positive test result. LD is a "clinical" diagnosis, but sometimes later into treatment, people get positive test results that back up the original clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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massman
Unregistered
posted
"re: CFS is a large garbage can diagnosis.
Massman - do you realize how condescending this sounds?"
In agreement !
It is condescending ! Condescending to the idiot docs that make such a diagnosis.
We really need the WHY, not the WHAT. CFS is just a description that one is tired all the time. Can't really work on that.
If we find the WHY then we may deal with the cause in that specific case.
Syphillis has been known for YEARS as "the great imitator". That is why lyme is "the SECOND great imitator." _______________________________________________ My opinion is based on working on patients with CFS / FM since the late 1980s and with their support groups since mid 1990s.
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posted
My understanding is that band 41 is for the flagella of a spirochete, so it could be Lyme, it could be syphilis, it could be some kind of gum disease. If there are any other spirochetes that cause disease, it could be one of them too, but I've only heard of those three so far.
Ask yourself which one of those you have symptoms of or are likely to have been exposed to, and it will be easier to narrow it down.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
In my case I was diagnosed with CFS even though I didn't even have the symptoms related to this syndrome. I only had the fatigue part but because most of the doctors I saw really knew nothing about the actual symptoms of CFS that is what my diagnosis was. Most of the time if someone suffers from chronic fatigue for a long period of time this is what happens.
It wasn't just from primary care (internists). I was also labled with CFS by 2 different neurologists.
I spent so much time arguing that I didn't have CFS but I DID have chronic fatigue. I spent 2 years reading about CFS and never believing that is what I had so I contiued to look and question doctors. I actually brought in articles and books about CFS showing the doctors I didn't have any of the primary symptoms. I didn't know what was wrong with me and neither did they.
I will never be sure if I had Lyme but I know I didn't have CFS...
Posts: 343 | From North Carolina | Registered: Oct 2008
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massman
Unregistered
posted
Well kim, many of those docs take the "I can't / won't say I don't know" oath. That is why they are so happy to have the wastebasket CFS diagnosis to use.
And as you do know, they DO use it.
No wonder the US has such poor health and health care while they sell us and feed us that we have the best. Sort of like The Wizard of Oz here.
posted
Oh yes they do..in fact the doctor I am seeing now is still trying to figure me out and said at my last appt. that I might still end up with a CFS diagnosis from him...shows how much he knows about that illness. Time to look for yet another doctor or else I can try and "educate" him on what the symptoms of CFS are and it is not usually primarily fatigue.
But on the other hand I was on abx for 30 months and my insurance covered all of it except the rocephin. In a way it is kind of sad because I truly and fully believe I never had Lyme but some other odd random infection and yet my insurance paid for all these medications that didn't get me well..not the mention the thousands and thousands of dollars of testing I had also...
Posts: 343 | From North Carolina | Registered: Oct 2008
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