Help Interpreting Test Results please

[marcia135]

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?

[Ricobord]

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.

[marcia135]

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 :-(

[cave76]

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)

[marcia135]

So, can you do IV yourself, once you've got the line inserted?  I honestly don't know much about it.

[marcia135]

"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...

[cave76]

"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.