lyme_mom

It is quite common when you are treating lyme disease for antibiotics to stop being effective b/c the spirochete changes shape and is very good at evading antibiotics. These bugs are very smart-stealth pathogens. For example you may start treatment of lyme with doxycyclene or amoxicillin and then add something like ceftin or azithromycin after a month or so to corner the lyme. Once this is no longer working they might try a different combination and these decisions are made based on a review of the whole picture: the symptoms, the history and a review of blood work. Coinfections are often involved and require specific medications in conjunction with the lyme meds. Symptoms are the most important factor though. If you have not consulted an ilads trained physician I would definitely do that if possible. They are masters at eradicating multiple infections from the body b/c most lyme patients have more than lyme spirochetes involved and they have a great deal of experience with all kinds of antibiotics and other medications that kill bugs in the body.

I would add that I do not like the name "chronic lyme" because it suggests you can never get rid of it and I am hoping this is not true. According to my llmd they are very successful in treating lyme and sometimes it comes back within a few months of stopping treatment and the patient needs to do a few more months of treatment but afterwards they are done.

Jodie- I am so sorry for what you are going through and I hope your son sees some improvement soon. It is so awful that so many children are dealing with these horrible bugs. The lyme doctors know how to get rid of these bugs so hang in there. I know none of this is funny but you really cracked me up with your comment about the germ infestation and wondering if you live in the Third World. That really made me laugh. You are so right. All these bugs-it just boggles the mind! I remember at the first visit with my first llmd he said told me that my son could also have Bartonella or Babesia in addition to lyme and I was like "Huh?" More? I was thinking to myself "You have got to be kidding". I was so careful about carseats and other things that would affect my kids' health. I had no idea that there was something lurking in my backyard, and on the playgrounds and soccer fields that could make them very sick for years. You will put this behind you one day so hang in there! There is a reason you are here and something good will come of this.

You could do that too.

I think there may be some lyme literate doctors who are not members of ILADS, International Lyme and Associated Diseases Society, but most are members. I think that using ILADS to locate a llmd near you is a good way to find a competent doctor.Their members meet each year and go over the latest info on lyme and coinfections and they train under each other. It is a very active group and their members are dedicated to helping each other treat lyme. There are likely lyme doctors out there who are not members of ilads but they may not follow ilads protocols to treat lyme (some don't use antibiotics as you can read in Connie Strasheim's Insights Into Lyme Disease Treatment) or they may simply not be members. In any event it is always good if you have references who speak highly of the doctor, especially ones who have gotten well.

As Elizabeth alluded to, these infections can be there but not show up on a test. Negative coinfection tests do not mean much- it's the symptoms and patients' response to treatment. I read dr Schaller's books on bartonella and babesia and you get a pretty good idea how hard it is to find these organisms in the lab. Schaller does his own testing of patients and finds babesia that doesn't show up in regular lab tests. I know dr j and other llmds do not count on a negative coinfection test to rule out a coinfection if the patients' symptoms indicate a coinfection. These days most people with Lyme have one or more coinfection. Hard to believe at first because it's hard enough to believe u have one disease let alone three or more! Sometimes the word Lyme is used to refer to any of these tickborne infections, not just borelia so it gets confusing.

My Llmd says Lyme treatment is up and down-three steps forward, one step back with the herxing.

Have you seen a llmd? Given how poorly your daughter is doing you might want to wait on the ivig until the lyme protocol has a chance to start working. From what I understand the ivig is not as effective if the lyme infection is not under control. Hopefully you have seen a llmd who has your daughter on the right combination of antibiotics for lyme and possible coinfections.

Well heres the whole story We are 16 weeks post IVIG with Dr K. His prophylacic dosage of 250 augmntin/day did really nothing for ds8.5. We upped it to augmentin 600ES twice a day after a couple strep exposures this sumer. We stayed with that. DS started to plateau off and we decided to switch to Biaxin to keep the abx rotating for efficiency. Now we went to CT to see Dr J after Igenex came back negative and we still had leg issues. We also saw Dr B. same day later in the day. Dr B decided to stay with rotating aug and Biaxin. Aug dose ended and I switched to Biaxin and ds was doing good for 1st five days on it. Dr J's addl bloodwork came back positive for Bartonella. He added Zithromax 100 mg twice a day and Bactrim 240 mg twice a day to the Biaxin 250 twice a day we were already doing. Two days into this regimen ds started herxing really bad. I called Dr J and spoke with him. He said to stop Zithromax and switch to Augmentin 600 bid since Biaxin and zith together as macrolides can make the zith cause side effects. I double confirmed he wanted ALL those abx in ds and Dr J said yes if he can tolerate it. So now we're doing aug 1200 total + biaxin 500 total + bactrim 480 total = 2200 mgs of abx/day. Other factors ds had a loose tooth and lost it on tuesday. Zith and Bactrim were both liquid initially when ds had the bad herxing and they both contain red40 dye. Dr J says real herxing involves a lot of fatigue which ds didnot have. Dr J says herxing without exhaustion is side effects not true herxing.Atleast thats what I understood. I was driving when he called. Poor ds is still full of crazy motor tics all day and it all started with adding the lyme meds a week ago. So now I don't know what the HECK is going on or what is right or wrong anymore. Did I stop the Zith too soon? Maybe it was the red dye he was reacting to. Has anyone done zith and biaxin two macrolides together? Should I call Dr B for a 2nd opinion on meds? I know he will ask me to lower the dosage. PLEASE- any advise? I have never heard Dr. J say that true herxing is accompanied by fatigue. Also it is difficult to know with a child what the symptoms really are b/c they do not always know to tell you. Is it possible you misunderstood him? We had herxes that were not accompanied by fatigue in our family.

The Bartonella looks exactly like stretch marks except they don't follow the pattern of the skin the way they would if it were true stretch marks. If that is the case then that explains why he was so certain that it is bartonella. Not everyone gets the rash so at least you got the sign so you can treat it.

There has been a lot of talk on the forum lately about interpreting the ingenex results. It is important for everyone to understand that a blood test cannot rule out Lyme Disease b/c Lyme is a CLINICAL DIAGNOSIS. Getting Igenex testing done is a great idea but it should be interpreted by a lyme literate doctor in conjunction with a review of the patient's symptoms and a physical exam. It is after all only a test for antibodies and some people do not make antibodies to lyme. You can have igenex do a follow up test for approx 125 where they check the indeterminate band 31 against all positives in their database. They did that for me and I learned that I was band 31 positive. An indeterminate band is not a negative. It means there was something there but it was more like a faint line instead of a thick line. In my opinion an indeterminate band is often smoke indicating that there is fire. Thats just my opinion but I have seen this repeatedly with family members who later tested fully positive for lyme. To illustrate this I dug up my own igenex test, which was cdc and igenex negative. These were my results: IGG: band 31 IND; band 41 positive. IGM: band 31 IND, band 34 IND, band 39 IND and band 41 positive. The only band that was positive in my first lyme test was the non specific band 41 but I definitely had lyme. I later tested positive on the lyme dot blot test from Igenex. A couple of my kids had similar test results but they had lyme, were treated and are better. I would definitely consult a llmd because your test shows two double starred bands that are indeterminate under the igm section (which usually indicates an acute infection), bands 31 and 83. One of these bands is band 31 which only shows up after a year of exposure to lyme. A llmd would be better able to tell you whether or not a lyme treatment might help your child.

Your interpretation of the igenex test is right. My first lyme test was igenex and CDC negative but I had indeterminate bands for double starred antibodies. Igenex offers a follow up test where they look at band 31 and compare indeterminate bands to their database of positives. My ind 31 became a positive in this test. I definitely had Lyme but think I may have been tested too early on in the infection. I look at those results you posted as very suspicious for Lyme (it definitely indicates exposure to Lyme). Btw a llmd does not limit him or herself to whether igenex or the CDC considers the test positive. Results like u describe plus symptoms are reason enough for a trial treatment. I am pretty sure Dr j does not agree with either the CDC or the igenex criteria for a positive test. He reads the bands himself and doesn't pay attention to whether the overall result is positive or negative.He also does a complete physical exam unlike anything I have ever seen. There are physical signs he looks for too.

I wouldn't. Lyme can get worse if you go off the antibiotics and you don't want that to happen. He can still do many tests while on antibiotics. Its the symptoms that matter most anyway so don't worry about being on antibiotics for testing.

Great article! Thanks!

He would start to feel better the day after he stopped taking the tindamax. The tindamax caused him to be in so much pain though. The real improvements seemed to come about a month after stopping tindamax. We also switched to augmentinxr (a once a day pill) around the same time b/c he was having trouble taking so many pills before school. So I don't know how much was because of tindamax or because of the augmentin xr.around the same time.

The bartonella rash is pretty distinctive. Did it look like stretch marks? It sounds like a reasonable approach but if it makes you more relaxed to get a second opinion I'd do it. We have used two llmds and it was reassuring during the worst times that we were doing all we could do. Our llmds basically took the same approach. Good luck!

The one I posted about that my vet sells is no longer available. I checked BBB after reading smartyjones' post and this is the one they offer: http://www.bedbathandbeyond.com/product.asp?sku=17413953 I also found this one that looks like a spoon with a slice out of it. It looks like it would work well too. http://www.tickedoff.com/ Remember to keep a baggie with it and a pair of gloves so you can remove the tick and save it.

That's weird- now it doesn't cone up for me. It worked a day ot two ago. I will find it when I get home and post.

It takes a while to treat lyme but I would have expected for you to see some improvement since June. You may see something after a few more weekends on tindamax. It caused pretty bad herxes for my son. There is no harm in calling dr j's office and talking to his staff. Thats what they are there for. They will run it by him and get back to you quickly.

:-) so funny. Good luck with the test. The cd57 is a good lyme screen for adults that is covered by insurance.

We also had no history of a tick bite (except one on my daughter) but we had Lyme.

The reason the Igenex test is better than the tests done by other labs (namely the ones covered by insurance) is that Igenex tests for multiple strains of lyme and Igenex tests for two antibodies to lyme, numbers 31 and 34, which are considered highly specific for lyme. The other tests do not test for bands 31 and 34. This has something to do with the lyme vaccine that failed in 2001. They thought we would all have gotten the vaccine (which was based on one or two of these bands) so they left these bands out b/c we would all have shown up positive for 31 and 34 after the vaccine. They canned the vaccine and never updated the tests to include 31 and 34. Clongen Labs in Gaithersburg MD is also considered a good lab for lyme testing.

I stocked up on these tick removers when we got lyme disease but the truth is I have not had any ticks to remove in two years. I keep it in my car with a plastic glove and baggie in case I need to remove a tick but I have not needed to use it. In fact we never saw ticks before we got lyme except once when my daughter had one attached. Could have been a tick that fell off that gave us lyme or perhaps we got lyme from one of the many mosquito bites we get every summer. That would not surprise me at all.

Here is a blurb from something I posted a while ago regarding tick removal devices: "Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend: http://www.rei.com/product/407279) and clean area with an antiseptic. Wear gloves and do not use Vaseline or a match. The State of Maryland provides instructions here: http://www.cha.state.md.us/edcp/vet_med/ld_prevent.cfm#remove."