Met with Infectious Disease Dr.

It was better than I expected. She is from the East Coast and had a son that had Lyme disease. She explained the different camps with regard to the stances on "Lyme" and of course explained things from her perspective. She explained the Elisa, and she explained the Western Blot, and why because those markers don't exist for me, then, that rules out lyme. She looked over my list of symptoms, the questionnaire from Horowitz's book, and also the screening for co-infections and lyme that the naturopath had given me. She was very thorough with me and took notes of when I had been in Slovenia, and when I had been in CT. She also said, if they see someone with a bullseye rash, that they do just directly begin treatment and that it might be good to have my husband come in and see her as well just so we can wipe it off our diagnostic plate. She is not going to re-do the Western Blot, but she is testing for co-infections, and will also do a lab where they let the blood sit for a bit and see if anything surfaces. So, here we go... 10 days it will take for the blood tests... she wanted to know if maybe now that the brain aneurysm was fixed, these other issues would clear up. I stressed I had been really healthy my whole life, that these other issues seemed to be unrelated to the aneurysm, and I haven't been journalling symptoms, but I decided to journal yesterday what I was feeling. So - if I was to encounter an infectious disease Dr., encountering one from the east coast familiar with Ledyard, CT where my residencies were, and had a son who had had lyme, I met with the best possible person. Flowing happily. So woozy when I got up from peeing I had to grab the counter. Thought I was going to pass out. But the aneurysm is fixed!

I"m glad it went better than you expected! But I do have to say this is a red flag: "She explained the Elisa, and she explained the Western Blot, and why because those markers don't exist for me, then, that rules out lyme." No, it does not rule out Lyme. Even the CDC states that Lyme is a clinical diagnosis, although you have to go into ILADS information for an explanation as to why. I can state it in a 'nutshell' way if you are interested. There are many reasons why you are not testing positive.

I am glad however that she has said to bring in your hubby, but I don't know that I'd want to "waste" my one shot with hubby on a doc that doesn't even know enough about the faulty testing. He would have to 'fit' into her very narrow view of what in reality is a very broad topic.

And I have a friend that I met online that has a brain aneurysm from Lyme, so don't rule that out as a symptom either, unless you have reason to like a family history of them or something.

Your wooziness could be from Lyme induced POTS, but I would caution you to have it checked out because of having had an aneurysm so recently.

Yes - agreed - but if it gets my hubby in to see her and get tested - that is progress. I know what to do herb wise for the Lyme and have started up cats claw and japanese knotwood again. She also wasn't very open to the notion of a "herx" when I told her about the reaction I had to an anti-biotic that does kill the lyme bacteria. She just simply stated it isn't used to treat lyme. But that is not the point, it may not be used to treat lyme, but it does kill the bacteria. She did see the blood work though of what it looked like when I sent to the ER. I don't think it is normal for a bladder infection to effect the kidneys to that degree that the blood work and symptoms made the Dr. think for sure I had kidney stones. She told me they screen blood for babesia, and I told her I had just downloaded a pdf from the CDC that said they don't screen donated blood for babesia, so yes, I think her knowledge is not that accurate and she admitted that the Dr.'s don't have that much time to stay up to date on things. She was open, that was good. She listened, that was good.

I definitely agree about getting your hubby in and tested too.

So, in a nut shell explanation for why the testing is so faulty:

The difference between local labs such as Lapcorp and IgeneX is this:

Local labs make there lyme probes using rabbit antigens from 2 strains of Lyme.

IgeneX uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme.

Also, when a western blot is done there is an acidic gel that is used to separate out the bands. Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands.


The tests themselves were designed for tracking purposes, not for diagnostic purposes (the CDC knows this too!!).

The tests only look for antibodies to the Lyme bacteria - but Lyme will lower the immune function, so there are considerably less antibodies produced for said tests to find!

Other infections can make even harder for the immune system to function well enough to produce those precious antibodies.

I'm sure I'm missing some more information, please forgive me as my brain is tired! LOL! I'm sure that others will chime in with the remaining things though.

multifacetedme said...
WOW ! Brilliant ! ! ! So, all the more reason to take the approach, right action with nutrition and herbal protocol. I think I am not going to wait for treating co-infections, and after I have been on Cat's Claw a month, begin that. Look at my Horowitz book and see what makes most sense given symptoms. If I go slow, the herbs can only help, not harm. Picked up some charcoal tablets to supplement the epsom salt baths I've been using for added support.

I really surprised that someone so versed as your infectious disease doc is in lyme wouldn't be supporting what ILADS ( and now the state of Virginia ) says about the necessity of symptomatic diagnoses of lyme disease and how unreliable testing is. Sad.

My hope is at least hubby will see her.

Interesting post multi.
I've got an appt with an infectious us disease doc on my insurance plan next week and a different id doc next month. I might as well give it a shot since I'm firing my so called LLND. I don't need to pay top $ to be prescribed herbal formulas that the clinic sells for top $. I've got the buhner books so I'll try that protocol like PeteZa did.

But..... I'd really like give the combination drug regimen a try first. From what I gather, it is successful with many. Even buhner sez so! This buhner protocol seems rather complicated and daunting. I'll do it either way, but I hold out hope that meds will work. My LLND has only given me doxy, a-bab, and artemesinin for the 3 B's. I asked for mepron, azith, rifampin, nope, he wouldn't do it.

I faxed in my igenex test results to both Id docs and with that, each agreed to take the case. I don't have any expectations but it appears they took my case seriously enough since they screen their referrals before accepting them. I wonder though, are they dismissive of igenex?

If they give me the 7-10 day abx routine, I'll try it and look for another llmd who's more willing to do the drug therapy.

These posts are from March of 2016 even though some of them say today.....

There are glitches on this website that do that quite often.

Black Jack, how long have you had lyme?

Have you read Bill Rawls, Md's book called Unlocking Lyme? It is really a terrific book. He was a Ob/Gyn that got lyme disease and he did Buhner's protocol. He has since written this book and has a shorter version of the Buhner protocol.

One thing he does say, is that it is his experience that antibiotics are great for acute exposure to Borelia, but for anything chronic, he highly recommends herbal protocols.

And herbal protocols do far less damage to the human body.

I am just stating what he states!! So everyone don't jump on me -- write to him.

Having put that disclaimer there, I do believe him.

PeteZa said...
These posts are from March of 2016 even though some of them say today.....

There are glitches on this website that do that quite often.

Black Jack, how long have you had lyme?

Have you read Bill Rawls, Md's book called Unlocking Lyme? It is really a terrific book. He was a Ob/Gyn that got lyme disease and he did Buhner's protocol. He has since written this book and has a shorter version of the Buhner protocol.

One thing he does say, is that it is his experience that antibiotics are great for acute exposure to Borelia, but for anything chronic, he highly recommends herbal protocols.

And herbal protocols do far less damage to the human body.

I am just stating what he states!! So everyone don't jump on me -- write to him.

Having put that disclaimer there, I do believe him.

Thanks PeteZa. I'm familiar with Rawls' bio but haven't read the book. I have to say that I'm a bit leery of people who write books as a way to sell you their products.
So far, my naturopath is batting. 0000 with herbal remedies. In fact, 4 herbal remedies he has given me made me worse. A-bab, cortisol Manager, hpa adapt, Kavinace have been really bad news for me. That's why I'm ready for abx, I think. How much worse can it get? Rawls sounds compelling and has the credentials however. Does his Lyme protocol look like buhner's? Is it a one size fits all like buhner warns about?

I don't know when I was infected. Been real sick since September 2016. The rate at which I would have to implement the buhner protocol seems soooo slow. I can be bull headed and plow ahead too fast. I already did in fact.

Just a few days ago, I started the cordyceps powder, green tea, milk thistle, and quercetin all about the same time figuring I was safe with those but have been awakened the past 2 nites at 2am with the runs. Im feeling like I can't win with this natural stuff....
I could go on a rant about how my life is wrecked from this but will spare you.

I have 3 friends and acquaintances who had Lyme undiagnosed for over 2 years each before they finally got treated. All recovered very well with abx though one had to have iv for 3 months, another for a year, and the 3rd was on oral abx for over a year. Granted, it wasn't a picnic for them either.

Thanks for letting me vent.

If you go the antibiotic route...do you have a LL Dr. to treat you?


The pulsing approach with antibiotics isn't as hard on the body...even though it's often more types of antibiotics cycled in...
There are quite a few days off...in fact almost as many as days on.

But, detoxing is still crucial.

I don't know what specifically the Alka Gold does, I have never taken it because it can't be used if your hypertensive, which I am on meds for.

Have you ever taken any binders? I use charcoal capsules and generally will take them if I need to(that is knowing I'm reacting/herxing) at bedtime at least 2 hours after taking or eating anything else-because I won't be needing to take anything else for at least another 2 hours post binder.

I reserve the binder for when I'm herxing really bad and want everything out of me in an attempt to return to base.

Girlie said...
What did you mean that most LLMD's aren't too keen on the abx?

Just an impression I get from reading the bio's of the other 3 in the area I live. They're all in 2 different integrative clinics in norcal that have their own supplement pharmacy. My ND is in one of those clinics. Every time I see him he tells me to buy at least one of their overpriced "remedies" which thus far have not been remotely helpful. 2 of the other llmd's in the area work in that clinic as well. Their credentials look better than those of my doc however and one them is an ilads fellow. They cost $500/hr, which I would pay, but fear it's a roll of the dice as to whether they would be more apt to rx abx. I get the impression that they're rewarded for pushing their products at high prices. Am I paranoid in thinking that have more financial reward for keeping us sick? When I saw my LLND on Monday, he took me off doxycycline I'd been on for a month (fair enough) and replaced it with an herbal tincture "Lyme Formula". I'm waiting a few more days to start it til the a-Bab washes out and I get back to previous baseline. No more abx for now. I asked for mepron or rifampin but he said not now, without offering explanation as this part of the conversation cane at the very end of the hour. .
Thus my hope, however far fetched and improbable, that an Id specialist on blue shield will surprise me.

Girlie said...
I would phone and ask if they prescribe antibiotics or herbals.

I don't think the LLMD's want to keep us sick for financial gains - there isn't a shortage of lyme patients.
I hope I'm not wrong.

Their bio's say things like Over the past decade, much of his practice has involved treating patients with Lyme and chronic illnesses, utilizing a full array of both integrative and functional medicine."
I read that as saying it all depends upon the patient. I emailed a doc from the other clinic in town and she said she doesn't follow burrascano or horowitz protocols because most patients can't handle that volume of abx in their system or the intensity of the herxheimer reactions.
Girlie, you're doing the abx a lot, how have the herxes been for you?