I got my Lyme Disease test back from Igenex

[JBJBJB]

Thanks Roz, Trudi, Kim, Casey and Nancy for the information. All these information are very helpful. It's more complicated than I thought.

I like to get myself educated before I head to see a Lyme Doc.

JB

 

[Mumof3]

Nancy – Thank you for the explanation and article. I will print it off and refer back to it as it was very informative.

Well I have begun my research to educate myself about Lyme. I really wish there was a Lyme 101 course I could take. 🙂 Anyways I have learned that the treatment of Lyme is more successful when you treat the co-infections first (i.e. Babesia). I have also attached a great link. It lists all of the antibiotics used to treat Lyme and exactly what they are used for.

http://www.anapsid.org/lyme/matthewgoss/drugs.html

[nspiker]

Mum,

Thank you so much for posting that link.  I have bookmarked it for further use.  It was the most organized and easy-to-decipher one page that I have read.  Everything else is always too complicated and  confusing (for my little brain). :doh:

The one thing that caught my attention, is that it said that Burrascano's guidelines are that you not take flagyl/tindamax with a tetracycline.  Uh-Oh!  I guess I better follow up on that one since I'm taking minocin and tindamax. 

Also, did you notice how high the dosages were?  That was also really helpful.  Now I know why the llmd wants me to up the minocin dosage.  From a lyme perspective, it is not high enough to be bactericidal and cross the blood brain barrier.

So happy to have others to share information, which makes it so much better…..nancy

[Parisa]

Mum,

That's a great compilation of the Lyme drugs although of course the statements there must be taken with a grain of salt.  I noted that it says that Clindamycin combined with Quinine is a difficult protocol due to fever and hearing loss.  Well, my husband did 4 months of IV Clindamycin and Qualaquine as the final death knell in his babesia treatment (this after aggressively treating Babesia for over a year with IV Zith, malarone, IV Invanz etc.) I had seen similar statements like that and was really nervous about the combination.  Turns out he had no problem with it at all which goes to show that you need to be aware of side effects but it doesn't necessarily mean that they will be an issue for you.

[JBJBJB]

Very interesting read. If you have not bookmarked this link, it's a good one.

http://lymemd.blogspot.com/2010/01/lyme-2010-brief-update.html

“Diagnosis remains clinical. Laboratory data should not be over-emphasized. Lyme Western Blots from Igenex, MDL and Clongen are helpful. I prefer Clongen. They provide quality pictures of blot strips which quantitatively compare patient reactivity to controls. C4a is a good marker of infection, better than CD57. Other clues include: reversed vitamin D levels, elevated CRP, low/normal B12 and folic acid levels, and low white blood cell counts. Blood wet mounts reliably show motile round bacteria—presumptive Bartonella species. A large percent of patient have the BBB triad: Borrelia, Bartonella, Babesia.

Primary oral therapy with Doxycycline and Tindamax is excellent. Killing cysts early seems to improve outcomes. Tindamax is clearly better than Flagyl and Albendazole. Biaxin is a second choice in patient's who cannot tolerate Doxy. When Biaxin is used patients seem to do better when a beta lactam is added:Amoxicillin/Ceftin/Omnicel. The benefits of Plaquenil are not clear. Rather than having an anti-cyst effect, it promotes cyst formation. Many antibiotics used for Lyme also have mild effects against Bartonella as well. In patients with neurocognitive deficits, Lyme and Bart are generally both a factor. Bartonella/brain Herxes can be extremely severe. Anti-Bart therapy is such patients needs to be gradually ramped up. Drugs with low anti-Bart activity include: Doxy and Biaxin even though these drugs are thought to be only Lyme drugs. Minocycline is a little more active against Bart. Zithromax orally is a poor Lyme drug and has mild anti-Bart effects. Rifampin is somewhat more active against Bart. Bactrim is quite effective and quinolones are very active: Cipro followed by Levaquin and then Factive. Cipro and especially Factive are also good Lyme drugs. Factive is a fabulous Lyme drug.

Many strains of Babesia appear to be very resistant. I suspect like malaria, these bugs have a propensity for developing resistance. When Mepron, Malarone and Artemesin are relatively ineffective, Larium may be surprisingly effective. I generally like to treat Lyme first. The exception is patients with dramatic Babesia symptoms: drenching sweats. As a rule, patients respond quickly once the sweating stops.

I agree with the Martz approach to IV antibiotics: layering. I start with Rocephin, add Zithromax and then Flagyl. Works very well. Other IV antibiotics may be helpful but responses are more variable. Tigacyl has been disappointing in my practice.

Patient should be treated with IV antibiotics for at least 12 weeks, longer if possible. Gains from IV therapy require ongoing therapy with potent oral antibiotics or the gains will vanish. Factive and Tindamax are superb. Factive is costly. Doxy is a good alternative. A subset of patients only do well when beta lactams are continued. Biaxin and Amoxicillin remains an excellent choice of therapy.”

read on

[katieb]

Hi Everyone,

Finally received results of my IGenex tests, and here they are :

IGM

**41  IND
**83-93  IND

IGG

**31  IND
**39  IND
**41  ++

Everything else negative.

So that all looks pretty negative, but judging from what others on this thread have experienced perhaps not completely so.

I have read this link,

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

so know what all the bands mean. Now just waiting for Dr D appointment on March 16th, for his verdict.

Does anyone think it would be worth further testing ?

The thing I wonder about is, if these IND bands represent a small amount of specific antibodies, then where did these come from ?

Thanks !!  Katie 🙂

[linda]

Hi JB,

From that article and other information I've read here, you're going to have an antibiotic pharmacy before you're finished! I don't know how you all keep them straight, esp when you throw abx for mycoplasmas into the mix. I hope your appt in Mo goes well, where are you going btw? Keep us informed as to how you're doing, I hope that you're one of those people that doesn't get bad herx reactions. Good luck in Misery, I mean Missouri (sorry, an old show me state joke).

linda

p.s. almost forgot, how do you guys get your insurance companies to pay for the abx when the tests are inconclusive? When I was tested it was with Igenex, but I was with the rheumy I fired, and all they would tell me was the test was negative, they never could locate the lab sheets when I asked-one of many problems with that practice. Anyway, I'm wondering if I should demand a copy and have a look myself, the problem is that if the test is IND I don't think insurance will cover the abx.

[Maz]

[user=467]katieb[/user] wrote:

Does anyone think it would be worth further testing ?

The thing I wonder about is, if these IND bands represent a small amount of specific antibodies, then where did these come from ?

Hi Katie,

Yes, personally, I think it is worth calling Dr H of IGeneX direct and asking for his insights on your results before your consult with Dr D. He may recommend futher etiope testing on Band 31.

You're right to be questioning the sensitivity shown on your IND bands…these bands would be showing nothing if you had not been exposed to borreliosis. Thing is, when you take into account that there are over 300 strains of Bb worldwide, there is virtually no one test that can cover all the antibody reactivity possibilities on each and every strain's outer surface proteins. This is why Dr C, in the link you mentioned, says that even one band positive is enough to suspect Lyme and IND bands should not be ignored…they are significant.

Band 41 is one of the first to show up in Lyme testing and may even show up in someone who doesn't have Lyme, but another spirochetal infection, such as H Pylori, Syphilis or oral spirochetes. As you've read, it is a measure of our antibody response to the outer surface proteins of the flagellum of the spirochete. However, taken in combination with other double-starred bands, the inference is that it is likely Bb.

The reason why you might want to call ahead to IGeneX is because if Dr H does recommend further etiope testing, you could call through to Dr D's office to have them fax the order to IGeneX for further immediate testing. You may then have your results back in time for your appt.

Hope this helps a bit, Katie…it's a bit of a maze, I know. 😕 Over here, though, your results would be grounds for treatment by an experienced LLMD taken in combination with your symptoms, history (camper, hiker, gardener, traveler, etc) and possible past tick exposures in Lyme endemic regions (which is virtually everywhere now).  

Depending how you are feeling, physically, if you are nearly in remission, you will then have to decide if you want to upset the apple cart to include further antibiotics into your protocol. This is a tricky decision to make, especially if you're doing well on mino alone, but the flip side of this is that untreated coinfections hold potential for rising to the surface at some later date. This occured for a lady I spoke with by phone, whose RA was triggered by Lyme, but she reached remission on AP alone for a good many years. It was only when she had a run-in with cancer (and had to take chemotherapeutic agents) that her RA returned with avengence. Interestingly, her IGeneX labs were negative, but she was highly positive for babesia. Aggressive treatments for this infection put her back into remission.

Lovely to see you back, but so sorry you are now stepping into the muddy waters of the Lymelands. 

Peace, Maz

[eann]

I just wanted to bookmark this discussion for all the useful links provided. I need to study up some more. I don't know how you keep it all straight.

[katieb]

Hi Maz,

Thanks for your help as always !

I will do as you suggest, and telephone Dr H this evening (morning his time !) to see whether he recommends the further test on Band 31.

Then if that is positive, as you say, I will have to consider whether I really want to take further medication.

But I would really like to know whether Lyme is the actual culprit in all this anyway.

Thank you so much. I am still here though not much time to post these days – two nearly-18 year olds in the middle of university applications etc etc etc…..

Love Katie 🙂

[JBJBJB]

[user=11]linda[/user] wrote:

Hi JB,

you're going to have an antibiotic pharmacy before you're finished! Good luck in Misery

 

Hahaha LOL….. yes, indeed, it's really true. It's like antibiotic stir-fry!!! :roll-laugh::roll-laugh::roll-laugh:

Linda, I will give it a year chance. Then I will move on to use herbal antibiotics to keep them at bay. That's my plan.

[Author]

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