timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
A friend of mine was told he had lyme. He had HHV-6 infection.
You can't tell the difference between a chronic viral infection and a chronic bacterial infection (lyme).
Rule out everything "ususal" (Thyroid, anemias, B12 deficiency, Vit D deficiency, etc). Then start looking at infectious pathogens such as lyme and other tick borne pathogens, HHV-6, EBV, enterovirus, chlamydia pneumonia, etc. (Yes, you have to run tests....a clinical diagnosis doesn't cut it).
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Well, lyme's presence in the body weakens the immune system so that EBV, HHV6 and other viruses and parasites that we've been exposed to come out.
Lyme causes thyroid disease and a host of vitamin and mineral deficiencies.
So all of the above can readily coincide with lyme. and given the inadequate testing for lyme (and thyroid for that matter), it makes Diagnosis very very difficult.
I NEVER had vit/min deficiencies, evidence of HHV6/EBV (antibodies), or thyroid issues before lyme. Now they're very much a part of my health picture.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
The bottom line is we just really need research done. We need for someone to come up with accurate tests so that we know one way or the other. There's nothing worse then taking 30 pills a day that make you even sicker, and then not even knowing if you're treating the right thing for sure. Everything about this disease is frustrating.
I was checked for parvovirus (? spelling) but not sure about these others. Can these be checked with a lab test? Anything else that is viral that can be added to that list and can be checked? Would an ID doctor diagnose a viral infection? (I've been staying clear of an ID doc..)
Is there any other infection (aside from syphillis, can't spell and lyme) that would cause you to feel worse on antibiotics and when your dose is increased?
Posts: 207 | From NH | Registered: Jul 2009
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massman
Unregistered
posted
EAV testing can often show coinfections. It is electronic, quick + easy for all ages.
Organ health is vital. NOT stimulating stressed organs but a return to as healthy as they can be.
Change the terrain where the bugs live !
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think right now they are trying to blame it on anything but with everything from Mycoplasmas to HIV. I have no doubts my treatment is working. But is sure is slow.
-------------------- 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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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
purple mom~ I get most of my pathogens tested at Focus Diagnostics lab. HHV-6, EBV, Cpn, Parvo, HSV1. Here's a list of tests and code numbers that I just had run there:
Focus is owned by Quest, so if you are lucky and have a Quest lab near you, you can ask that lab director if they will take care of Focus' billing.
I see two ID doctors. They are wonderful. If you can find one to help you with the testing and treatment that would be awesome.
Chlamydia Pneumonia will make you feel worse on antibiotics if you have it.
While I am not yet well, I am feeling the best I have in 6 years...and this is after treating HHV-6, EBV, VZV, HSV1 and enterovirus. We are still working on enterovirus, HSV1 and Cpn.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Misdiagnosis can easily happen.
I recommend to friends who think they have lyme due to chronic symptoms, to get tested with Igenex for the co-infections and lyme.
If the co-infections are present with lyme symptoms, then I would recommend treatment for the co-9nfections to get rid yourself of them first.
I have friends that believe that they never had active lyme, (had lyme antibodies...but not active lyme) only after they had relief with heavy metal, candida, and parasite detox. They create the same symptoms as lyme in many people and it's hard to know what is the lyme and what is the toxins.
Remove all mercury metal amalgams during this time. This will speed healing up!
Then after, the co-infections are under some sort of control, do a whole body detox, and work on metals, parasites, and candida. There are various ways to treat all of these, so research must happen to choose what each person believes is best for them.
If lyme is still present then, consider more agressive treatment for lyme only.
The biggest thing is getting rid of the effects of all the antibiotics after ridding yourself of co-infections. That's when my lyme cleared.
Posts: 1009 | From NJ | Registered: Aug 2009
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bettyg
Unregistered
posted
3rd spirochete is SARCOIDOSIS affecting the lungs bad!
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posted
thank you timaca and all, i'm going to make a note of those tests and find a way to get them done
Posts: 207 | From NH | Registered: Jul 2009
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quote:Originally posted by seekhelp: treatment and more with a clinical diagnosis from a LLMD and 2-3 years going by with little to no improvement. That scares me. Sometimes they don't admit they are wrong.
Yeah I kinda would be wary with clinical diagnosis only - it could be so many other things. Though if you have positive WB with BB specific IgM bands, what to make out of it but not lyme?
Btw the reason I think abx are not working is because they can not kill intracellular bacteria effectively, I think Marshall is right in a way that you have to fix immune systems and let it do the killing , but I don't think his protocol is effective at this task for BB infections
Treatment with abx exclusively has a poor outcomes for chronic infections , abx alone imho is not enough.
Posts: 856 | From MA | Registered: Jul 2009
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posted
Good question, I never got a positive diagnosis for lyme, 3 tests all negative but im sure I would get a diagnosis on clinical symptoms if I could find a LLMD I could afford.
However, nearly a year later I still have symptoms. I did take 7 weeks of doxy a few months ago - seemed to help initially,but not for long & when I stopped taking it the symptoms stayed the same.
I really don't want to pump abx into my body if that's not whats wrong. I have a long history of random symptoms that could be related but no chance of a tick bite until dec08.
I'm currently waiting for nerve conduction tests as most of my symptoms are neuro. The dr wanted me to try steroids but I refused those, I'm still not sure if its lyme & don't want to take the chance of making it worse.
I feel totally in limbo and its driving me crazy.
I really don't know if its lyme or not and neither do the doctors.
If only there was a better test, we'd all know for sure.
Posts: 69 | From UK | Registered: Jun 2009
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posted
Yes, we believe my husband was misdiagnosed with Lyme in Dec 08. Prior to that for 3 years we went to 10 specialists and they concluded that he had an auto-immune disease as well as anti-cardiolipin antibody but they could not identify what exact disease it was.
At that time, based on his symptoms, we were suspicious that we were getting the false negative results and that he may actually have lyme, and so many people with Lyme have this experience right?.. so we left those doctors and went to an LLMD. This LLMD used Igenex and diagnosed him with Lyme. Man were we relieved, finally a diagnosis!! Went on 5 weeks of IV Doxy, then he developed pancreatitis and was hospitalized twice within a month. The second time his kidneys shut down, dehydration, anemia.
As you can imagine we were no longer comfortable with this LLMD so we found a new one. He ran the bloodwork and it was negative for Lyme but he said it did had 3 markers so he put him on oral amoxicillan. Due to several reasons, we felt uncomfortable with this doctor, so we found a new one.
We saw the new doctor last week and she ran her own bloodwork twice and told us he does not have Lyme, the test is completely negative. She assured us of her experience with Lyme and with the number of patients she has treated she would definitely know if it was. We asked her why the Igenex test result was positive? She advised us about the controversey surrounding that lab (which I had already looked up online) and that most doctors do not use them anymore. Said they did a study with mice and send blood to many different labs and where 50% of test should have been negative - Igenex sent back 100% positive.
What she did conclude was that my husband does in fact have an auto-immune disease, as well as that anti-body confirmed by her bloodwork and also the prior bloodwork done a year ago. She advised us that this is a very serious condition, we are now waiting for her to speak with the hemotologist and internist to come up with a treatment gameplan, then we need to see the kidney doctor.
She let us know that we are very lucky to not be on dialysis right now.
I am very thankful that I left the 2nd LLMD who wanted to take the treatment slowly and possibly put him back on IV ABX. This new doctor told us that for her to put him back on IV ABX, she midas well be Michael Jackson's doctor.
So, yes we were misdiagnosed with Lyme and back to square one again.
This is an emotional roller coaster, once we had the Lyme diagnosis I wanted to freak out on every one of the doctors we had seen. Now I want to freak out on the original LLMD. Once I get more facts of what his disease is I am definitely filing a complaint. Especially considering the fact that he had the 5 page report from the hemotologist explaining the auto-immune and antibody issues as well as the bloodwork supporting it and never even considered it, nor did the 2nd LLMD.
I pray for everyone who is going through this Lyme mess right now - it really is a horrible situation.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Your husband's experience is unfortunate. But I believe even if your husband has some unidentifiable auto-immune disease it has to have been triggered by something.
He tests negative now. It doesn't mean that the LLMDs were wrong. Perhaps the antibiotics did the trick for him and cured him of Lyme.
In some cases the Lyme bacteria can cause permanent damage in an auto-immune way.
So that may be what you and your husband are looking at.
Posts: 366 | From MA | Registered: Apr 2006
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quote: What she did conclude was that my husband does in fact have an auto-immune disease, as well as that anti-body confirmed by her bloodwork and also the prior bloodwork done a year ago. She advised us that this is a very serious condition, we are now waiting for her to speak with the hemotologist and internist to come up with a treatment gameplan, then we need to see the kidney doctor.
Interesting. What kind of autoimmune disease it is? Cause it is likely that many autoimmune disease are triggered by bacterial pathogenes
quote: Especially considering the fact that he had the 5 page report from the hemotologist explaining the auto-immune and antibody issues as well as the bloodwork supporting it and never even considered it, nor did the 2nd LLMD.
What was the diagnosis and what were markers in blood work?
Posts: 856 | From MA | Registered: Jul 2009
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posted
We have no history of a tick bite. If the lyme was cured by the ABX, it could be possible that it now triggered this auto-immune disease ?? It just doesn't add up - back in Aug 08 he was positive for the auto-immune (lower titer antiphospoholipid antibody) and the anticardiolipin antibody suggested a disease, of which there are so many they couldn't pinpoint it, one specialist in NYC said granulomatous disease but never confirmed.
Then Dec 08 Lyme positive result, 6 wks IV doxy and if the Lyme was cured - this same auto-immune results show in the bloodwork Sep 09? That just doesn't seem logical to me.
OK so for the markers - I am not very literate like most of you at reading this so here goes:
quote: it could be possible that it now triggered this auto-immune disease ?? It just doesn't add up - back in Aug 08 he was positive for the auto-immune (lower titer antiphospoholipid antibody) and the anticardiolipin antibody suggested a disease, of which there are so many they couldn't pinpoint it, one specialist in NYC said granulomatous disease but never confirmed.
Thing is if it was autoimmune disease - those with genetic factors are diagnosed in childhood, adolescence. Other 'auto-immune' diseases are of unknown origin, but is is strongly suspected that they actually have bacterial origin
So was the diagnosis lupus? Btw did you know that BB coats its surface with proteins from healthy cells, causing autoimmune responce ?
quote: Then Dec 08 Lyme positive result, 6 wks IV doxy and if the Lyme was cured - this same auto-immune results show in the bloodwork Sep 09? That just doesn't seem logical to me.
Seriously doubt lyme could be cured by 6 wks of doxy. IV or not
quote: OK so for the markers - I am not very literate like most of you at reading this so here goes:
Lyme wise it does look kinda positive. Especially because on ehrlichiosis. IGG typically do show past infections though. IGM are usually what marks a present one it seems
Now regardless of whether it was lyme or not if your husband acquired a new auto-immune disease, there has to be a reason for it .
And I bet the suggested treatment is corticosteroids? Unless the disease is indeed one of hereditary origin I would be really careful with conclusions. Corticosterods will ease the symptoms for a while but if the origin is bacterial at some point it will become MS/RA/Parkinsons/Alzheimer or cancer
Posts: 856 | From MA | Registered: Jul 2009
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posted
We don't have a definite diagnosis - I am sure we are in for another battery of tests before they come up with one. He does have lung nodules and swollen lymph nodes and already had a biopsy which was not cancer or infection so that was very odd, ruled out sarcoidosis. Lupus was also ruled out. I am just waiting for her phone call (oh don't we love that wait!!).
She did start him on a non-steroidal anti-inflammatory (i forget the name right now).
In researching causes of autoimmune diseases I am suspect of him possibly contracting something from mold spores he was exposed to which was around the time his symptoms started. He gutted his mom's basement and removed the mold growing under an elevated wood floor himself with bleach. Huuummmm ?
Thank you again for all the information - I really appreciate it.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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"Phospholipid autoantibodies (aPL) such as cardiolipin autoantibodies (aCL), phosphatidylserine autoantibodies (aPS) and lupus anticoagulant (LA) are found in patients with antiphospholipid antibody syndrome (APS) and systemic lupus erythematosus (SLE), as well as in drug-induced disorders, infectious and neurological diseases.1"
Note the reference to infectious disease.
My doc tests for both of these at the first visit. Whether he tests to rule out those diseases or to correlate them to the Lyme diagnosis, I am not sure. Maybe both?
Not saying your husband has Lyme, just that these tests can be positive in Lyme.
Posts: 819 | From East Coast | Registered: Apr 2009
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"NB a number of infections can induce anti-phospholipid antibodies eg syphilis, Lyme disease, HIV-1) "
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Interesting... thank you. What scares the hell out of me is how do you be absolutely certain you don't have Lyme? I don't think you can. So the doctors rule out Lyme and being the great imitator it is he does have it and he starts treatment with steroids.. OUCH!!!
If it is solely an autoimmune disease and he responds to the steroid treatment or whatever they will give him and he is cured, then he definitely never had Lyme because it would not have responded to that...
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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I don't think you can be sure. I had the bulls eye, swollen knees and vertigo/dysequalibrium. That was in 1994 ans symptoms waxed and waned for the next 14 years.
My Lyme Western Blot only shows band 41. I do, however have a unique Bartonella species only found by a great researcher at NC State.
Steroids back in 2006 after a reocurrance of my vertigo made my symptoms worse and added some new ones.
It seems you are damned if you do, damned if you don't.
I don't know the answer, but am sorry you have to deal with this.
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Kitty, Sounds like you have been through an ordeal - how is your health at this point? I am sorry for you also. I could have never imagined so many people are suffering with Lyme. It is a horrible, horrible disease. I feel so sorry for those especially that can't afford the price of these LLMD's and antibiotics!! Thanks again.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All--
I had a Picture Perfect Bullseye on the back of my leg 21 years ago-- weeks before I started getting sick--
Not treated for 18 yrs-
at beginning of treatment My Lyme and Co infection tests came back- --- IND --- from Igenix--
I have Zero Doubt that I have Lyme and Babs--
Dont put much faith in test results--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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quote: If it is solely an autoimmune disease and he responds to the steroid treatment or whatever they will give him and he is cured, then he definitely never had Lyme because it would not have responded to that...
corticosteroids never "cure" anyone .Even in a time interval as short as 3 years results are equivocal (in fact more patient got worse than those who got better) http://www.cochrane.org/reviews/en/ab006264.html
And you get many really bad side effects from long term use (osteoporosis for one)
And BTW most likely short term he will "respond" . As most people with chronic infection would - it will decrease the inflammation, therefore making him feel better. If you continue with steroids immune system will be shutdown, bacteria will multiply even faster and in 5-10 years there is high probability he will run into consequences.
Posts: 856 | From MA | Registered: Jul 2009
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Thank you. I am not too bad off these days. My remaining disabling symptom is the chronic dysequalibrium.
Ditto on what groovy2 said. Groovy2 and I are in the same boat regarding test results.
Posts: 819 | From East Coast | Registered: Apr 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Okay..... I was diagnosed clinically with LD a year and a half ago. Only band showing up was band 41 IGM through labcorp.
I took large doses, and then moderate doses of several different antibiotics. Flagyl, Zith, Biaxin, Diflucan, Minocycline. Didn't improve after a whole year of treatment, so went off antibiotics and started treating for an unidentified autoimmune disorder. Its a long story..... but I was willing to try anything to feel better.
Took strong steroids for 3 weeks, which made me feel temporarily better. LLMD would not treat me longer than that with steroids. Stopped taking steroids and started plaquenil which is used to treat autoimmune disorders as well as LD. About 3 weeks into plaquenil all heck broke loose.
I started having all kinds of crazy symptoms, and doc immediately took me off plaquenil. I took about 2 weeks off meds and doc decided that my reaction to autoimmune treatment was more proof that what I actually have is LD.
Anyway, I started back on lyme treatment with low dose doxy, never did well on large doses; and finally I feel like I am getting somewhere. Also after 16 months into all of this, I came back with band 23 IGM positive, which is only specific to Lyme. This helped to back up my lyme diagnosis.
I actually think that when our bodies are dealing with LD and working so hard to fight it, that we may actually go into an autoimmune state.
I think maybe my body was in overdrive, as that is what it felt like, and maybe my body was attaching itself,(autoimmune).
Its all speculation on my part, but I almost feel like the steroids may have slowed things down for me, so that now the antibiotics are actually starting to work for me.
I am not condoning steroids for ppl with LD; but in my case it might have been the thing that turned my body down a notch so that it could actually heal.
Steroids are not a cure for anything. So if I were in your shoes, as I practically was, I would probably take a short course of steroids, which should make you feel better temporarily. Then stop them and see what symptoms arise.
I don't think you just wake up one morning and your body has decided it will attack itself. If you go the autoimmune route, you are not treating the cause of the disorder. However, there might be exceptions, where maybe the cause is cured and you are left with the body attacking itself.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Is this where most patients seek IVIG?
-------------------- 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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posted
Hey Southern Girl! Thanks. Good thing your on the right path finally.. well actually we are on plaquenil now, just started it yesterday (hope we don't have those same side effects - what were they?) I think you are absolutely right... we just have to wait to see how the body responds to the meds. Sandy
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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posted
Negative tests are also typical for lyme, because lyme lowers the immune system and you are not able to make antibodies.
also, the lyme bacteria has a double cell wall and hides its surface proteins. The immune system cannot react to something it cannot see.
Often doctors give a short course of antibiotics for a couple of weeks (?) and then wait two weeks and then test for lyme.
That way some lyme is killed, (only then the surface proteins are exposed to the immune system) and the body can make some antibodies.
The western blot tests and the Elisa tests only test for antibodies. Igenex also reports positive bands that are equal to the reference band, the other labs only report bands that are stronger than the reference band, and no labs report the weak bands....
I have read repeatedly about patients who after some years of negative tests tried PCR testing, PCR tests for the actual lyme bacterium and are not dependent on antibodies.
There were some postings here that some got positive PCR tests after taking some grapefroit seed extract (just for a couple of days, before the PCR test)
A positive PCR test is considered proof. But often one must repeat the test several times, i t is like the proverbial needle in the hey stack.
Posts: 366 | From Europe | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think it is very possible they may have Had
Borreliosis and Virals. You can kill the bacteria
but it is darn near impossible to get rid of the
virus but it can be sequestered. I take several
home remedies to try to do just that just in
case. After our immune systems being down from
lyme there is no telling what opportunistic
organisms have gotten in and let have free reign.
Cancers, virus', parasites, you name it.
-------------------- 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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massman
Unregistered
posted
Two great mixed (specifically blended to enhance effectiveness and reduce side effects - not just throwing "everything that works" together) herbals for viruses:
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