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Help Interpreting Test Results please

I would really appreciate any opinions on my Lyme results please.  It was done by IGeneX.

Lyme IgG/IgM Serology  0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa  +
39kDa  IND
41kDa  ++
83-93kDa  IND

Igenex Western Blot IGG result  Negative
CDC/NYS result   Negative
34kDa  IND
39kDa  IND
41kDa ++

I have had ME/CFS for 20 years and hypothyroidism for 11 years.  I don't remember a tick bite but it is entirely possible as I was living and working in rural areas at the time I fell ill.
Would you recommend any further tests, like ELISA?
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Avatar universal
" (Or is that another how-long-is-a-piece-of-string question?)"

Rico may have a longer, more precise answer, but my answer is "Bingo".
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Avatar universal
Ah yes, it seems to be a great deal of trial and error, hopefully not too much of the error though :-(

I like the screwdriver metaphor, very apt for a spiral spirochete!  I shall think of my antibiotics as screwdrivers and hopefully ones that fit the groove exactly...

How long would you give a trial of an antibiotic or abx combination before you could assume it wasn't working?  (Or is that another how-long-is-a-piece-of-string question?)
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Avatar universal
That's a good link, thank you.  I think the crucial words are " referral from your GP".  I will try and sweet talk mine, but I have my doubts it will work.  I'll give it a go nonetheless.  Thanks for the info.
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Avatar universal
"Why do you not get Lidocaine injected?  What's the problem with that?"

In some people (and that was me, although I never had a problem with Lido for dentistry) it makes the veins spasm making the insertion of a PICC difficult. That's only some people, not everyone.

Suffice it to say "difficult" is a misnomer in my case. After WAY too many tries (I'll leave off the graphic description) the guy went to the other arm, no Lido. Went in like a dream.

Oh, and my veins are a Phlebotomists' dream also. :)

I've read people's accounts who  have been on NHS and received IV with home care. I don't know all the ins and outs of NHS but here is just one site in the UK

"The Community IV Therapy Team is a countywide service which provides intravenous (IV) therapies to patients in their own homes, community hospitals and community outpatient clinics following referral by a GP, Consultant or Specialist Nurse."
http://www.glos-care.nhs.uk/our-services/specialist-services/iv-therapy-service
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Avatar universal
Ah no, it's all good info to know, thank you.  It sounds more than most people might cope with themselves, but needs must, and it depends how desperate you are to get better.  People inject themselves for diabetes, don't they, so no, I'm sure it isn't a big deal once you get used to it.
I'm not really a wimp ;-)  I'm always fascinated to watch when they take blood out of my arm, and am very dismissive when they say "are you alright with giving blood, are you going to faint?"  I'll probably faint next time, having said that ;-)  I have got "good veins" though, which no doubt helps to not make it too traumatic.
Why do you not get Lidocaine injected?  What's the problem with that?
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Avatar universal
@marcia

You said
"doing it yourself doesn't sound like a treatment for the faint of heart ;-)  "

Well, actually I was trying to show just how easy and painless it was! LOL Maybe I got too wordy? I try not to sugarcoat information---- that does no one any good.

Nothing hurts with a  PICC except for the first few seconds of the insertion of the line. And that was just a few seconds of white knuckle time for me, After that, absolutely no pain. I had my PICCs inserted by an experienced ICU nurse and then a nurse in the infusion center. Don't accept a trainee. LOL
Another thing I learned (for me) was not to have Lidocaine or some such injected at the site for PICC insertion. Take the few seconds of white knuckle instead.

But, since you may never have a PICC, all that info is probably more for the lurkers on this site. And, remember, I'm not trying to talk you in to getting IV!

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Avatar universal
I'm sure you're beginning see that there is no hard and fast answer for treatment for a late stage Lyme patient, especially if there are coinfections involved.  We are each our own complicated stew of variables.  Some do better on IV, some do better on orals. Some people just respond better to some drugs than others.

The studies done to see which drugs are "best" for treating Lyme carefully excluded people with any other known or unknown medical conditions.  While this meets the desired criteria for the controlled study that researchers love to do, it doesn't match the real world of people with multiple infections or even other unrelated health issues.  (So, perhaps Rocephin works "best" for neuro Lyme in a study, but maybe Bicillin works "best" for people with neuro Lyme and coinfections.)

The primary difference between "mainstream" medicine and LLMDs when it comes to treating Lyme, is that the IDSA is very strict about their so-called guidelines, which are really very simple. (Apparently, Lyme spirochetes are like a screw that requires only one of two kinds of screwdrivers.) The only accomodation is to swap out Doxy for Amoxicillin.

Good LLMDs look at each patient as an individual, usually starting with tried and true meds that usually work well, but then adjusting as appropriate for each patient. This is where the skill and experience of the physician really matters.

I think treating late stage tick borne diseases is truly a specialty in itself that is just as complex, if not more so, than most other specialties out there. I just encourage you not to be afraid of IV meds if your doc recommends one.  Many have experienced great improvement on them. There are plenty of stories of people who wished they took them sooner. Bicillin worked much better for me and was easier on my body than its' oral equivalent Augmentin was.
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Avatar universal
Ah okay.  Good for you - doing it yourself doesn't sound like a treatment for the faint of heart ;-)  
As to the NHS, no, they probably wouldn't let you do it, but they wouldn't do it for you either :-(
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Avatar universal
You asked" can a person do IV themselves after the PICC is inserted".

Well, yes and no. LOL

Yes---- I did what is called a 'push'---- where I connected up a fairly large syringe full of the Rocephin to the end of the PICC that was protruding out of my arm and then 'pushed' the R. slowly in small increments every two minutes. "Pushing" too fast is STRONGLY discouraged for it drops too much of the caustic drug too near your heart and people get side effects from that. It takes about 40 minutes---- just enough time to do a crossword puzzle, watch the news or read a few more chapters. I could also do the push in the car (while someone else was driving! LOL) on the way to a movie or dinner out.

The R was delivered weekly to me in a refrigerated container, already loaded and ready to infuse over the next week.

Once a week the home health agency nurse would come out to change dressings, check on me, check on the line etc. That was all included in the fee.

For the ' no' part----- there are some times when a person has to go to an infusion center for the infusions/pushes/drips. That isn't the norm in the US but it does happen.

Now, because you're in the UK------ NHS may have a different slant on what's allowed and what isn't.

So, long answer----- and not nearly complete---- but I offer it just in case you decide on IV---- not trying to convince you to ask for it. There's still a lot of controversy about whether IV or orals is best.

The answer to that question is still "Yes and No". (grin)

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Avatar universal
So, can you do IV yourself, once you've got the line inserted?  I honestly don't know much about it.
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Avatar universal
"I've heard the NHS will only strictly follow their own Lyme testing.  I've also heard that Lyme testing done by the NHS is almost useless.  Doctors are simply not allowed to treat for it without an NHS positive test, so that forces you into private medicine.  Since you're already negative, you'll need a private doc to order testing in Germany or at IGeneX in the U.S. "
Yes, that's what happened in my case, having had a couple of negative tests on the NHS, presumably ELISA.  I asked specially for a Western Blot but it came back negative.  But I didn't see the actual results - GPs won't show you the full details, because of course, only they understand them ;- ( .  There could have been bands showing there like my later Igenex WB, which after all said negative as well.  That was ordered by a private Dr in England, and I arranged the InfectoLab tests myself.

"I personally would ask for every Bartonella test the NHS offers in hopes I showed a positive on one or more of them. "

I suppose I could try that, nothing to lose really.  Sort of a dilemma because if they are negative, as may well be if the testing is useless, then my GP can just say "you/ve don't have Lyme, I've proved it" and won't give me any help at all with treatment.  Mind you, he probably won't anyway, as it stands, because he has already discounted InfectoLab, as he hasn't heard of them and doesn't know anything about their tests.   Whether he will listen to any recommendations on treatment from BCA, if I go there, but I doubt it.  If it's not within NHS guidelines, he'll just say he can't.  I know there are still a few GPs who will think out of the box and will prescribe outwith the guidelines, but not many now.  I could change GP I suppose, but in the UK, you can't "try before you buy" so I may end up with one as bad or worse :-(   I feel its better the devil you know...
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Avatar universal
"some medical studies showed Rocephin worked better in most people"

Sometimes a new drug will get more ink and funding and the oldies but goodies are ignored.

Am I a skeptic? Yes.
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Avatar universal
Just talk to your doctor about treatment plans.  Express your thoughts and concerns.  If you do go with IV Rocephin, I've known people who did it themselves at home with no problem, after a couple weeks of becoming familiar with the process with a nurse.  

I did Bicillin LA shots as well. I think they're not recommended as often because some medical studies showed Rocephin worked better in most people.  But Bicillin works great for some, sometimes better than Rocephin, as Cave76 described.  I really don't want a PICC line and didn't mind the Bicillin shots once I figured out to use an ice pack before and a hot pack after.  I'm on Rocephin shots now (trying to avoid the PICC), and they're awful. I have terrible bruising and soreness. Don't know how long I can tolerate them...  We'll see.
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Avatar universal
I was on Rocephin IV for 17 months. I  had almost no problems with it, other than herxing at the beginning but I was EXTREMELY careful with my PICC and the care of it----- even firing a couple of home care nurses because they weren't careful enough for me. (grin)

I did have one line break (outside my body) for no reason (probably got accidentally pinched) which was easily fixed at the ER.

I could infuse at home, in the car or at a friends house.

Is 2-3 weeks long enough? I doubt it, but that's just  my opinion. 17 months is probably too long too, even though I did it, probably as a 'test' subject. :)

Did R. help me? I think it did---- I lost some symptoms along the way but nothing kicked me over the goal post like biclllin did. That's just what my reaction to bicillin was---- and it's not meant to infer that YOU or anyone else will get the same result.

However, bicillin IS tolerated quite well usually and does have a good track record. I don't know why it isn't used more. After all its the drug of choice for late syphilis---- another spirochete. Shrug.



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Avatar universal
There's one thing we know for sure that isn't messed up:

     your ability to read, absorb data, think it through, and explain it.

Much to our collective benefit, I might add.

Thank you, Rico.  Take care -- J.
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Avatar universal
Yes, the Bartonella PCR test can miss it. Just as a Lyme PCR can miss Lyme. The PCRs are known to be false negative more often than the antibody tests, but they're almost never false positive. So, they're meaningless if negative, definitive if positive.  Whether or not to get one may depend on cost and whether you have to pay out of pocket.

I've heard the NHS will only strictly follow their own Lyme testing.  I've also heard that Lyme testing done by the NHS is almost useless.  Doctors are simply not allowed to treat for it without an NHS positive test, so that forces you into private medicine.  Since you're already negative, you'll need a private doc to order testing in Germany or at IGeneX in the U.S.

I personally would ask for every Bartonella test the NHS offers in hopes I showed a positive on one or more of them. I was "not negative" on an IGeneX Bartonella Henselae antibody test, but negative on the FISH test.

Between Lyme, Bartonella, and Babesia, every single organ in my body has been affected either directly or indirectly.  In some cases, it's hard to tell which illness caused which symptoms, especially with Bartonella and Lyme.  I think both contributed to my GI problems, which have included nearly everything described in the article "Bell's Palsy of the Gut."  (I recommend it... very informative.)

My Lyme symptoms most resembled MS and IBS, along with a few other things thrown in.  They include light sensitivity, sound sensitivity, tinnitus, loss of sense of taste, choking, fatigue, brain fog, low stamina, malaise, mental confusion, irritability, dizziness, feeling off balance, hand tremor, short term memory problems, saying the wrong word (entertaining at times to my family), difficulty speaking (tripping over words), stuttering, word finding problems, forgetting familiar names, getting lost while driving, difficulty writing, inability to remember what I'd just read, agitation, anxiety, terrible rib pain, stomach pain, nausea, food intolerances, acidic Ph levels, candida, tachycardia, arrythmia, brain lesions (could be caused by Bartonella), slightly elevated thyroid, adrenal fatigue, kidney stress, wild hormone swings, severe PMS, hemorraghic ovarian cysts (due to the hormone swings), loss of libido, muscle twitching, magnesium deficiency, shortness of breath, dry mouth, worsened dry eyes, a variety of floaters and sparkles in my vision, and excessively thick mucus in multiple places. (Once I had so much crust on my eyes in the AM I was sure I had pink eye, but I didn't.)  I've probably missed a few.  Some of them I only had briefly or one or two times.

Bartonella symptoms include low stomach acid, partial intestinal paralysis, poor digestion and absorption, stomach pain, liver pain, peliosis hepatis, intestinal distress, tingling in limbs, anxiety, numbness in my hands, blurry spot in vision, numerous small brain lesions, heartburn, and a short lived blind spot. Testing showed pancreatic insufficiency and I showed signs of biliary problems.

Babesia symptoms include fatigue, chronic air hunger, excessive sweating (only a couple night sweats, LOTS of daytime sweats not caused by hormones), swollen liver, enlarged spleen, intestinal distress, and occasional respiratory distress.

I was tested for allergies, pulmonary diseases, Sjogren's, cancer, sarcoidosis, and got a full MS work up by an MS specialist. I saw at least a dozen docs, including my GP, an OB, allergist, ENT, 3 neurologists, internist, cardiologist, a GI doc, and 2 ER docs on 2 separate visits (one for respiratory distress where I was misdiagnosed with asthma, and the other for severe abdominal pain... that ER doc thought I had cancer. At least he admitted me. The pain meds were very welcome. ID docs refused to come see me as I'd tested negative for Lyme and Babesia.)  My misdiagnoses were asthma (the worst, as I was given steroids twice for it) and chronic fatigue syndrome.  The brilliant hospital docs could only shrug and say I had a mysterious neurological disorder and that my GI distress was mostly likely due to stress.  The GI doc completely missed my classic presentation of Peliosis, which should have led him to look for Bartonella.

I thought I was an extreme, unbelieveable case, until I went online and started reading others' stories.  There are a whole lot out there like mine.

I've never had any joint or muscle pain, and definitely no arthritis.  The IDSA says cases like mine are nearly unheard of.  Hah.  Doesn't it occur to them that people travel overseas?!?!?
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1763947 tn?1334055319
Yes, it can miss Bartonella. There is a chance of that with all Lyme tests.
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Avatar universal
"A single CDC study in Maryland last year showed that only about 6 out of 10 people who actually had Bartonella tested positive on one or both of the antibody and PCR tests"  
So the PCR can miss Bartonella too?  So it's probably not worth while doing that test now?

"my symptoms most resemble those of neuroborreliosis seen in Western Europe, including the U.K"
What are those particular symptoms?

It sounds like you're having a tough journey.  It's all so complex :-(  But I knew that already.  Yes, I'm divided between being depressed that I've got Lyme & Cos and pleased that at least I've found something wrong with me to explain why I feel so lousy and to give me something to fight.
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Avatar universal
cave76, How long did you do the IV for?  
Even if I only do 2 or 3 weeks IV to start, will that be a reasonable start?
Thanks mojogal.  I'd like some herx to show it was working - but nothing too severe!  We'll see how it goes.
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Avatar universal
It's a great idea but I doubt it would work in my case, because it would only be if it was sanctioned by a GP and my GP is very anti private medicine, which is what I'm going for.  I will speak to him but I'm pretty sure I won't get anywhere.  The couple of Lyme tests I had done on the NHS came back negative, so they will only go on that result.  I spoke to him about getting blood taken for those tests I've just had done, and he refused, even when I offered to pay to get it done.  And he implied that I couldn't trust the lab because he'd never heard of them (more a reflection of his ignorance than on the reputation of the lab ;-) )  Only if the Lyme tests had been done on the NHS and they had prescribed the treatment, would I be able to ask for that nurse service, I think.  I will ask, thanks for the tip, but not holding out much hope!
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Avatar universal
"... without any medical help here, ... I doubt that I could do IV from then on" after returning home.

You are in the UK, yes?  Here in the States, I believe there are 'visiting nurse' arrangements where the IV management is done by a well trained registered nurse who comes in at regular intervals to check on the set up and be sure all is operating smoothly, to change dressings, or whatever is needed.  I would think the UK is even more advanced in that regard, from what I have read about the NHS being more home-focused, but I may be wrong.  A few phone calls might give you the data you need.

Best wishes!  Keep us posted.
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Avatar universal
Don't avoid IV abx if that's what your doctor thinks might be best for you.

I had IV, had multiple co-infections and I had been sick for a long time and my herx wasn't bad at all, as herxes go.

Each person will react differently and, unfortunately, you won't know until YOU try it. :(
Helpful - 0
1763947 tn?1334055319
I was bit over 20 years before getting diagnosed. Even with orals the first few months of herxes were bad but don't let that stop you, that means bugs are being killed.
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Avatar universal
Thanks again for your help and encouragement.  You were all very helpful with my first enquiry, and you are being very helpful again!

I was hoping to go to the BCA clinic in Germany for several weeks to start treatment, and then would have to continue it myself at home, under their guidance and with drugs prescribed by them, but without any medical help here, so I doubt that I could do IV from then on.  I'd always thought that IV abx were more powerful, but not necessarily from what you are saying.  Obviously the doctors there will recommend what to do when I go, but I'd thought of blasting it for a few weeks there with IV abx (although Ricobord's comment of "Going straight to IV with a long term infection and multiple coinfections can trigger some brutal herxing." is a bit offputting...)


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