RNmom

The pilgrims talk about ticks and illness that included symptoms of fevers, rashes, and joint pains. So, Lyme was here before Plum Island (I am assuming you are referring to that "hot spot"). However, the pre-existence of Lyme in the New England area does not preclude the possibility that a naturally occurring population of bacteria was amplified or altered (for the worse) by an accidental outbreak.

My son was put on a high dose of Diflucain and he had a lot of neurologic side effects (tremor, dizziness, agitation, and paranoia). we switched him to Lamisil and alternate with Sporonox. Diflucain can kill Lyme but your son's response does have the "feel" of drug side effects rather than die-off. I hope they make changes and/or give you a new plan that he can tolerate better.

Remember that you can always adjust the treatment medications in terms of dosage or frequency if she has a serious Herxheimer that is too strong for her. Also, we added in a psych med for support as his agitation was almost unbearable. For our ds15 Topamax settled down the excitability in his brain and, while it did not eradicate his symptoms, it brought the symptoms into a more manageable range. We titrated from one pill a day to his current level of three a day. We titrated according to his needs. A few months into Bartonella treatment we also added something for sleep (Lyrica). He remains on these additional medications to this day and we have no plans to wean them off until he is well for a very long time and/or he so clearly does not need them that the signs are obvious. I hope that you and your daughter find relief very soon. Do not give up hope. Bartonella is a beast - but so far we are seeing that it can be tamed - maybe even beaten.

Tindamax, like Flagyl, is used to treat antibiotic related diarrhea. They are also both good "cyst busters" and that is what we most often talk about when using either Flagyl or Tindamax to treat Lyme. However, the other important benefit of either Flagyl or Tindamax is to help manage / prevent antibiotic related diarrhea (which is most often caused by c-difficile).

Wilma, I posted "Treating Lyme and Bartonella" just now with you in mind. We seem to be dealing with similar issues. However, I think we are having better success. I wanted to share a little of our experience in case it can be useful as a resource. You are in my prayers.

We began treating our ds (now 15) for Lyme in the fall of 2010. The oral antibiotics kept him from getting worse (and triggered a lot of Herxing). However, he was still in bad shape by Spring of 2011 so we got a PICC line into him and he had 12 weeks of IV Ceftriaxone. He made a miraculous recovery of his cognitive abilities, communication, muscle control, feeling of well being, and quality of life. After the Lyme treatment we tackled the Bartonella. We are using a combination of Rifampin and Azithromycin. We "pulse" the Rifampin 5 days a week (Mon. through Fri.) and switch to Azithromycin on weekends. He also gets Tindamax on weekends to protect the gut from c-difficile. Of course we use many different types of probiotics daily as well as Vit D, Calcium, Vit C, Magnesium, Folic Acid, Vitamin A, Curcumin, and Qucertin Bromelaid. This week we will also add TMG (lots of B vitamins). Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of. These really flared up badly when we first began the Rifampin / Azithromycin. We understood it to be Herxing. Initially, the Herxing was almost constant with a few really awful days followed by a few "less awful" days cycling over and over without end. Eventually though he began to have a few good days every week or two. These brief periods of improvement would be followed by the return of the terrible herxing and neuro-psych symptoms. Gradually, the cycle lessened in intensity and the good stretches lengthened. Now, when he Herxes and has a flare up of neuro-psych symptoms they are significantly milder. It has now been 6 months of treatment with Rifampin / Azithromycin for Bartonella. We are aiming for a full year of treatment. This note is especially written for Wilma Jenks (whose posts really pull at my heart). Treating Bartonella is not for the "faint of heart." It is very difficult, the Herxing is horrible, the patient needs tremendous support, and (worse of all) it takes a really long time to successfully treat it. Bartonella looks like PANDAS. And, to make things even more difficult, if your child has PANDAS (as our does) the Herxing will flare up the PANDAS symptoms. The treatment process is a juggling act between managing the PANDAS and the Bartonella symptoms and Herxing. We tried Bactrim for our ds15 in January 2010 ... thinking it would help for the strep. It had no effect on him except to give him a rash (we did not know about Lyme back them and possibly that was a Herx). We have found the Rifampin / Azithromycin combination to be excellent for Bartonella. It is most often used for Bartonella by many LLMD's. Another combination that is used is Rifampin / Doxycycline (although some clinicians feel that the Doxy interferes with the action of the Rifampin a bit). Other good antibiotics for Bartonella are Cipro and Levaquin. I agree with the other parents who are encouraging you to talk with your LLMD about your child's response to Bactrim. Try doing some reading about treatments for Bartonella (easy to find on the net). Consider discussing a change in antibiotic protocol for the Bartonella. The good news is that many of the Bartonella treatments also address Lyme (which is still highly suspect in your child's case in my humble opinion.) I will keep you in my prayers. God's grace and goodness will sustain you and your child every step of the way - even when things seem bleak He is always there.

Wow! Congratulations - that is good news for you and encouragement for me. We are 4.5 months into Rifampin for Bartonella and also seeing improvement. We do not have lab tests to track as our ds15 had an obvious Bartonella rash and all the symptoms that go with it (rash is considered 100% diagnostic). It is encouraging to see that your time-frame and labs are "correlating" with our clinical picture. I've been told that Bartonella needs at least 6 months to be treated with Rifampin. I've talked with a couple former Bartonella patients who were treated for a year... I think we are going for a year as my ds15's symptoms were "over the top" - but we will see in time if we need to go that long. Thanks for posting the good news!

I'm told that Levaquin is a great drug for Bartonella. But, the herxing can be powerful - especially if given IV.

Very encouraging post. We are right there with you... My ds15 was Dx with PANDAS and treated with PEX with good improvement that only lasted 2 months. This disappointment was followed by a Dx of Lyme, Babesia, and Bartonella. Dealing with these infections has been rough but my ds15 has now regained all the benefits that he had from PEX and more... plus the improvement seems to be "holding steady" this time. It is a complicated process when a PANDAS child also has Lyme etc. One important note: Without PEX I do not believe that my ds15 could have gotten through the Herxheimer reactions that his Lyme treatment brought on. He really needed both kinds of treatment. We almost lost him. Thank you for posting!!

Hi Wesimkins, Our family had trouble tolerating the Flagyl (gut issues) and our LLMD switched us over to Tindamax. It does the same thing as Flagyl but our family seems to tolerate it better. Good Luck! Overall, it looks like you are on a good, comprehensive protocol.

We used both My Lyme ID and Igenex to diagnose our family of four with Lyme last fall, 2010. Both tests showed the same results. We decided we like My Lyme ID for all the additional information that we get. You can track the cytokine levels to evaluate treatment response.

We are now talking with my son's Lyme doc about treatment for his Bartonella. He has spent the last four months under treatment for Babesia and Lyme. P.O. antibiotics were not effective and, currently, he is receiving Rocephin IV for 8 weeks. His Bartonella symptoms have always dominated his clinical picture and they continue to be a problem. One option is to continue his Azithromycin (which he has taken for four months along with Mepron for Babesia). The second option is to start him on Rifampin. As we discuss this I would like to gather information from others who have experienced successful resolution of Bartonella. What worked? What was the length of treatment time? Thanks in advance for any helpful posts! As an additional note: Our son has also completed four months of Doxycycline for his Lyme as well as IM Bicillin at frequencies ranging from monthly to weekly. The fact that the Bicillin was the only thing that really improved his clinical picture (but would not hold beyond four days) was a big factor in our switching to the IV route.

I agree with LLM. The most frustrating aspect of our son's Lyme treatment has been distinguishing between PANDAS flares and Herxheimer reactions. For the first few months of his Lyme treatment we were in our Lyme docs office almost weekly discussing symptoms and medication responses. It gave me the strength to "stay the course" and also helped to fine tune the treatment plan.

Thank you for this post. This psychiatrist is a real hero to many who suffer from TBI.

I LOVE this post! It sums up our situation very well. To loosely paraphrase a recent past ILADS president: PANDAS + Lyme is not like adding 1 + 1 = 2. Rather, it is 1 + 1 = 2 to the power of 10 ! The two diseases interact with each other in such a way that the symptoms of each are compounded exponentially. This thought helps me understand the "two steps forward one step backwards" progression of our son's treatment process. This former ILADS president also said that he has taken care of pure PANDAS patients and pure Lyme patients but that the PANDAS / Lyme combination is the toughest to treat. Trust your gut - if you want to test for Lyme do so. If you want to hold off and focus on PANDAS only do that. I know that any parent resourceful enough to make it to this forum will be able to assess their child's response to treatment and "dig deeper" if and when necessary.

Thanks for posting a great source of information. I read it and saved it for future reference.

Hi, Congratulations on your success with Babesia! The rash you are describing sounds like the one my ds14 developed on his back. I thought it was stretchmarks from a growth spurt... but it was unusual for the location and red color. When our LLMD saw it she said it was clearly the Bartonella rash. I have the Bartonella rash too - more like red squiggly spider veins on my legs and easy to mistake for varicose veins due to the location. I would have your LLMD look at the rash.

I whole-heartedly agree!

I am so sorry that you and your boy are going through this. Waiting for test results while symptoms rage on is a very tough situation. I know many of us here have been through this same horrible intensity and would read your post with a great deal of empathy. I wish I had some definitive suggestions. Can you call his pediatrician, or the doctor treating him, and ask for a very light medication just to help him settle down at night? Maybe something that he would not have to take all the time - just when things are bad. There are people on this forum who know a lot about alternative medications that are calming. Maybe they will respond here. Based on our experience with a positive Lyme test, after diagnosis and treatment for PANDAS, I would hold off on the steroids until the Lyme test comes back. If he does have Lyme the steroids will depress the immune system and allow the Lyme to proliferate. Can I ask which Lyme test you had and when? Try and "hold all plans loosely" until test results are back and you see Dr. B. You will get through this one step at a time.

I know you will do a great job presenting PANDAS as a valid problem. That will be a huge help. We were lucky to have a parent as our "clinic aid" whose youngest child had PANDAS. It was a big help to know that she understood the serious nature of my son's problem. When we updated his IEP this past fall we wrote in that he was not to go to the clinic when he felt ill - as that was where all the kids went when they became ill at school from strep! The clinic aid was completely supportive of this - she knew best how real (and scary) the risk of step exposure was in her own clinic. It was a small thing that made a big difference to us. Good luck with your presentation!

Hi Worried Dad, Re: So, yeah... I think you called it right. I was feeling paranoid based on recent developments for other families on this forum. If the rest of our family didn't have stubbornly high ASO, we probably wouldn't have done the Myco p. and Lyme testing. Like you, I was caught off guard by the positive Lyme results and clinical evidence of other coinfections. We found a Lyme clinician who also understood PANDAS. That helped give us peace as we began to tackle the Lyme etc. And, we have been able to keep him on his Augmentin XR. Tears came to my eyes when I read this. If my posts were one of those that triggered your worries I feel very conflicted about that. One thing I do want to share: my ds14 (a PANDAS poster child) never had a positive strep titer. Ever. So our situations a very different. We ran strep titers on our whole family and none were positive for strep. Yet, ds14 had all the PANDAS symptoms you could ever imagine. This has confounded us for the, now 2 year, duration of his illness. DS14 has had good but incomplete responses to all manner of PANDAS treatments. I would not change a thing. (Except maybe having to go through this at all.) For my ds14 the positive Lyme test results were a surprise (we were looking into Candida and Mycoplasma) but as time went on they have begun to make sense for his individual clinical picture. Amazingly, it is his PANDAS doc that wants us to slowly wean him off the Augmentin XR! But, that is because we have added Zithromax to his Lyme protocol. She says neuro-psychiatric Lyme looks a lot like PANDAS clinically. I hope you post your progress and findings as you continue to get treatment for your son. Thanks for sharing this - it helps! P.S. Just got through reading the 4th and 5th pages of this thread about your visit to your LLMD. What a relief to hear that you are "on track" with the Augmentin XR! It is encouraging to see that there are doctors who can get beyond arguing over whether our kids illness "exists" and put their talents into evaluating the individual needs of each child. Thanks for a very encouraging thread!!

I cannot tell if my son's cycles of agitation and anxiety are every 3 - 5 days or every 10 to 14 days. It seems to be a mix. Would it make sense because he is currently being treated for Babesia but also has the Bartonella rash which we cannot treat for a few more months? Also the cycles seem to be somewhat related to his medication cycles: Mepron / Zith for 21 days alternating with Flagyl for 7 days. He is crawling out of his skin with agitated anxiety, has increased OCD, rigid thinking, and a flare up in the "ever present" red rash on his face when off Mepron. Then, it seems, when he returns back to Mepron that the agitation and anxiety decrease @ 50% while difficulty with sleep, distress over "hearing a noise" at night, and a less agitated form of anxiety emerge @ one week of being back on Mepron. I would put the symptoms cycles completely to his medication changes but we have "good patches" of days occurring during each medication cycle. Those "good patches" seem to occur briefly every 3 - 5 days with major symptom flare ups emerging every 10 - 14 days. Perhaps too much is going on right now to discern definite cycles in my son?? What do you think - anyone?? I would really appreciate help with this issue. Thanks!

Re: ****One final thing. Many llmd's refer to these infections as borrellia-like infection, or bartonella-like infection. The fact is, not every bacteria, virus or parasite that is transmitted by a tick has been identified. Sort of frightening, but true. These doctors do an incredible job with the tools they have to treat their patients the best way we currently know how. But the science will keep evolving. (and I'm sure one day in the future there will be an answer as to why that band 41 shows up alone so often). Hope that helps!**** Thank you PacificMama this helps a lot!

Thank you both! I did feel a lot better after writing things out Fixit, re: the "My Lyme ID" I will be happy to share what I have learned so far - pm me if that is easier. lismom, we are on the east coast in the D.C. area. Lots of good LLMD's here thankfully. I am happy to share who we use. If it would help, just pm me.

Hi Fixit, A lot of what I learned right here on the PANDAS forum lead us to the Lyme diagnosis. We aren't getting rid of the PANDAS diagnosis yet however! I did post a longer response over on the Lyme forum under "Lyme after PEX for PANDAS (how we tripped over Lyme while looking for something else)..." or something close to that. My brain is "foggy" right now. You can PM me if you have any more questions. Take Care!