distinguishing Lyme from other disorders

[peglem]

I know Lyme is the great mimicker. But are there any symptoms that might be hallmarks that set it apart from, say, PANDAS? It just seems like testing is so iffy, and anyway, my daughter is getting monthly IVIG and is on zithro, so testing would be even iffier.

Here's why I'm curious:

My daughter had a PANDAS exacerbation last October, and was a strep carrier. At the end of November her pediatrician put her on a rifampin/augmentin combo for 2 weeks, then increased her zithro dosing. We had 3 months of some pretty sweet times (its all relative, but we had not seen things this good in years). In March and April, we did some low dose IVIGs and things went downhill again. Then in May, after her 1st high dose IVIG, we did another course of rifampin/augmentin (like a week after)and things got pretty sweet again, although during the treatment it was still pretty bad. We have continued 1.5g/kg IVIG every 4 weeks since May. She had her last one yesterday, but the past few weeks she's been slipping back. While its not nearly as bad as what it was last fall, I'm thinking we're headed for another course of rifampin if things do not pop back to the good soon.

We were so focused on the chronic strep before treatment, we didn't really look for more than that going on, but the herx reaction to the rifampin and the fact that the PANDAS treatment doesn't hold her steady makes me a bit suspicious that there's more going on here than just PANDAS.

[PacificMama]

My first answer would be "yes" and "no", in hallmarks that may differentiate. For some with only neuro symptoms, the symptoms can be identical, and can appear to be triggered (and actually are) by strep or some other illness. For most others, there is clearly other symptoms that are not seen with PANDAS. But I would say mostly yes, an experienced clinician would be able to differentiate the symptoms with a good thorough history taking, lab work, exam, etc.

 

An extensive lyme symptom list is here:

http://www.canlyme.com/patsymptoms.html

 

Two quick points: In lyme, symptoms are most often due to active infection, but sometimes there also is an autoimmune component that is triggered (similar to the autoimmune component triggered by strep). That is why high camK, and auotanibodies positive of the Cunningham test can be due to infections other than strep.

 

While some may say us lyme folks have told peole they are dealing with lyme, I'm fairly certain I've never done that. And I'm certainly not going to do it here. All I believe any of us have tried to do is suggest that a whole lot of us are probably dealing with multi-infectious agents. Borrelia (lyme), myco, and other similar pathogens are a large and growing problem. I will always suggest going to see a LLMD (lyme literate doctor). Not because they only "do" lyme, but because THEY ARE VERY SKILLED AT DEALING WITH MULTI-INFECTOIUS PATIENTS. They will run the labs. They will do the thorough history. They will do the 2-3 hour initial exam. They will not think you are crazy. They will respect you. And if you need it, they will prescribe the care you need (be it abx, or whatever). These people are just doctors. Even though they specialize in lyme, many do treat other medical problems as well.

 

I say if your child is clearly responsive to abx (with a herx and/or significant improvement), then it is worth considering that you may be dealing with an actual active infectious agent. And so in that regard, you might want to consider seeing a doctor experienced in this area. You might think that would be an infectious disease doctor, but as most lyme/co folks will tell you, they are surpisingly unreceptive to your symptoms. And so that is why a llmd is recommended (which may indeed by an ID doc, or just a GP or a ped... but they have the llmd training).

 

Also, and I'm sorry if I've got this wrong, but have you also mentioned that at some time your daughter was given an autism diagnosis? Again, I apologize if that's not correct. If so, you may want to check out the organization Lyme Induced Autism. NOT because I'm saying it's lyme. But because it is a group of parents, docs, etc. that believe that infectious agents are at the heart of many autism diagnosis. They put on an amazing conference each year. If it's of interest to read up on symptoms and stories, here is the link. Many parents have seen wonderful healing of autistic symptoms by treating underlying infections.

http://www.lymeinducedautism.com/home.html

 

Best of luck.

Mary

[sf_mom]

A good LLMD would consider her improvements on rifampin/augmentin an indication of something!

 

I would contact your Dr. and see if they wouldn't mind revisiting the combo for at least a couple of months to see if there isn't improvement again. Your only issue now would be the back to back hdIVIG that might have created an extended Herxing response making it difficult to know if its Herxing that is causing the current backslide until things settle out. So, it could take some time to see improvement on the new combo. Also, it is very possible that if this is Lyme she may have gotten it in-utero and may not make antibodies for Lyme because the body doesn't recognize the bacteria as foreign. In those situation, they are testing for the DNA shed into the urine..... I also think they test for specific DNA in the poop too. I'm in a whirlwind of testing right now so don't quote me on the stool testing.

 

Have you ever consider testing yourself to see if you are positive? You could do the basic Western Blot (IGENEX ONLY) for $260.00 to see if anything turns up. Now that I have some positive results via Igenex.. its 'looking like' congenital Lyme for my kids. They are currently retesting specifically around my positive Band 31 to absolutely confirm things for us. Even though Band 31 is fairly specific to Lyme they still want the confirmatory results.

 

Our LLMD has helped a ton of autistic children and many to full recovery. He said they can help them tremendously but a lot depends on frontal lobe damage while in-utero.

 

As far as being able to find differentiation between PANDAS and Lyme it is very difficult. Our Dr. prefers to call it a HYPER immune response to a chronic infection. The body just doesn't know what to attack anymore so it attacks everything. He believes once the infection is gone the HYPER immune response stops. So no auto-immune reaction in absence of chronic infection (this is obvious not believed by everyone).

 

AND, as you know we didn't think to check for anything else a year ago either. We had an obvious strep connection with a cluster of children. My younger DD with CaM Kinase of 157 was fairly non-verbal at 2 1/2.... just a lot of pointing and grunting for things. Eight months of antibiotics has really turned things around for her verbally. She just started Azithromycin/Alinia combo in the last couple of days and currently watching for a Herxing response. Her first poop after starting was a bright green poop.. also an indication of a bacterial infection.

 

I think I've posted these before but never hurts to repeat.

 

A good symptom list:

 

http://www.timeforlyme.org/signs-symptom-list.html

 

More on Lyme/Autism:

 

http://www.lymeinducedautism.com/

 

Taken from their website

 

Autism now affects about 1 out of 100 children.

How many have an underlying infection like Lyme disease that is causing autistic symptoms?

Many physicians and studies now show it could be as high as 90%.

Read on to find the answers to heal your family....

Edited September 3, 2010 by SF Mom

[sf_mom]

I think we were posting at the same time..... Sorry for the repeat information.

 

In our experience too: LLMDs are very versed in treating multiple co-infections not necessarily Lyme specific.

Edited September 3, 2010 by SF Mom

[lyme_mom]

I agree with sfmom and pacificmama. Btw did you know that rfampin is the drug of choice to treat bartonella?

[peglem]

Also, and I'm sorry if I've got this wrong, but have you also mentioned that at some time your daughter was given an autism diagnosis? Again, I apologize if that's not correct. If so, you may want to check out the organization Lyme Induced Autism. NOT because I'm saying it's lyme. But because it is a group of parents, docs, etc. that believe that infectious agents are at the heart of many autism diagnosis. They put on an amazing conference each year. If it's of interest to read up on symptoms and stories, here is the link. Many parents have seen wonderful healing of autistic symptoms by treating underlying infections.

 

Yes, severe autism here, with the caveat that I believe autism is symptoms, not the actual problem. And don't worry, even if you did tell me its for sure lyme disease, there is no way I would ever go with a dx from somebody who has never even met my child. I just wanted to see if my suspicions @ her abx experience were worthy of more exploration.

 

I would contact your Dr. and see if they wouldn't mind revisiting the combo for at least a couple of months to see if there isn't improvement again. Your only issue now would be the back to back hdIVIG that might have created an extended Herxing response making it difficult to know if its Herxing that is causing the current backslide until things settle out.

The low dose IVIGs in March and April made things worse. But the higher dose ones in May, June, July and August have not caused herxing or worsening of symptoms. It wouldn't take four months for the herx to show up, right? I don't think the current backslide is a herx to anything. The possible culprits are: 1) premenstrual discomfort- that time of the month should be here any day now. 2) The second 2 weeks after IVIG means her IgGs are lower and that coincides with school starting up again (exposures) 3) Something is rearing its ugly head again.

 

I'm thinking I'll give it a week for to see if its 1 or 2. If it starts getting worse or I see no improvement, its not a problem to get her pediatrician to rx rifampin again. I'd like to avoid the rifampin if I can- my daughter has been through enough ###### in her life- we'll go through that if necessary, to get the following months of recovery, but only if we have to. And no way, NO WAY will we do that for a couple of months!

 

Have you ever consider testing yourself to see if you are positive? You could do the basic Western Blot (IGENEX ONLY) for $260.00 to see if anything turns up. Now that I have some positive results via Igenex.. its 'looking like' congenital Lyme for my kids. They are currently retesting specifically around my positive Band 31 to absolutely confirm things for us. Even though Band 31 is fairly specific to Lyme they still want the confirmatory results.

I really have no symptoms of anything! So unless it has been completely dormant in me all these years....

 

Thanks for your responses...givesme some stuff to think about.

[sf_mom]

I can totally appreciate your concerns over the length of rifampin usage.... AND, I am definitely getting used to Lyme protocols verses PANDAS.

 

Just to give you some perspective on rifampin. Its widely used for extended periods of time to treat LYME and co-infections. My girlfriend's son who is 50 pounds and confirmed positive for Bartonella and another co-infection is on 500 m.g. Biaxin and 300 m.g. rifampin for a 12 week period. This particular combo might even be continued but won't know if there is a change of protocol until the end of September. Lyme is treated much more aggressively with antibiotics than PANDAS.

 

AND, yes you can be a carrier of Lyme for years without symptoms.

 

-Wendy

Edited September 4, 2010 by SF Mom

[MichaelTampa]

One symptom that I think goes with lyme, that I have not heard of going with PANDAS, is the pain by the joints, whether it's arthritis or just a shooting pain. Sometimes for lyme it is migrating, too, as it is apparently caused by the bugs, and they can move around in your body. I had pain in my left elbow that would come and go, sometimes mild, sometimes really sharp stabbing pain. Eventually, it moved to my left foot, and was much worse there. The left elbow pain was blamed on sitting in a chair at work with my elbow on the armrest frequently, so it was getting a lot of pressure. The left foot pain more frequently occurred while going to the bathroom, or when emotionally distraught about something, and so, of course, people thought I was just crazy and it was of course caused by just not having control of my emotions. It did move back to my elbow and then back to my foot. Then, when I started oxygen therapy (well before even hearing about or considering lyme as a diagnosis), I had what I would now describe as herxing pain in my foot, for a few days in a row, it hurt while doing the oxygen therapy, and then the pain was gone forever. Rumor has it oxygen can kill bugs, and some do use HBOT as part of lyme treatment, although I do not know how widely accepted it is. This was not HBOT, which is probably more powerful and expensive than what I was doing, I was using an oxygen concentrator that I was renting and eventually bought.

 

Anyway, I would say pain in joints / arthritis / migrating pains might be clues of lyme unrelated to PANDAS.

[lyme_mom]

Also, and I'm sorry if I've got this wrong, but have you also mentioned that at some time your daughter was given an autism diagnosis? Again, I apologize if that's not correct. If so, you may want to check out the organization Lyme Induced Autism. NOT because I'm saying it's lyme. But because it is a group of parents, docs, etc. that believe that infectious agents are at the heart of many autism diagnosis. They put on an amazing conference each year. If it's of interest to read up on symptoms and stories, here is the link. Many parents have seen wonderful healing of autistic symptoms by treating underlying infections.

 

Yes, severe autism here, with the caveat that I believe autism is symptoms, not the actual problem. And don't worry, even if you did tell me its for sure lyme disease, there is no way I would ever go with a dx from somebody who has never even met my child. I just wanted to see if my suspicions @ her abx experience were worthy of more exploration.

 

I would contact your Dr. and see if they wouldn't mind revisiting the combo for at least a couple of months to see if there isn't improvement again. Your only issue now would be the back to back hdIVIG that might have created an extended Herxing response making it difficult to know if its Herxing that is causing the current backslide until things settle out.

The low dose IVIGs in March and April made things worse. But the higher dose ones in May, June, July and August have not caused herxing or worsening of symptoms. It wouldn't take four months for the herx to show up, right? I don't think the current backslide is a herx to anything. The possible culprits are: 1) premenstrual discomfort- that time of the month should be here any day now. 2) The second 2 weeks after IVIG means her IgGs are lower and that coincides with school starting up again (exposures) 3) Something is rearing its ugly head again.

 

I'm thinking I'll give it a week for to see if its 1 or 2. If it starts getting worse or I see no improvement, its not a problem to get her pediatrician to rx rifampin again. I'd like to avoid the rifampin if I can- my daughter has been through enough ###### in her life- we'll go through that if necessary, to get the following months of recovery, but only if we have to. And no way, NO WAY will we do that for a couple of months!

 

Have you ever consider testing yourself to see if you are positive? You could do the basic Western Blot (IGENEX ONLY) for $260.00 to see if anything turns up. Now that I have some positive results via Igenex.. its 'looking like' congenital Lyme for my kids. They are currently retesting specifically around my positive Band 31 to absolutely confirm things for us. Even though Band 31 is fairly specific to Lyme they still want the confirmatory results.

I really have no symptoms of anything! So unless it has been completely dormant in me all these years....

 

Thanks for your responses...givesme some stuff to think about.

I never in a million years dreamed that my kids would be on long term antibiotics either. I also thought that long exposure to antibiotics are bad for you but that was before I knew anything about Lyme Disease. Long term antibiotics are not bad for you if you have a life threatening infection. Misdiagnosed for at least a year or more, my son developed Bells Palsy, which is when half the face is paralyzed. In some ways we were lucky b/c the facial paralysis got our attention and he finally got diagnosed. At the time I had no idea what lyme was. By the time we knew he had lyme he was very ill and needed a picc line to stop the spreading infection. The picc line wasn't even enough to stop the horrible headaches so they suspected bartonella and added rifampin. THe headaches finally receded with the rifampin. THose antibiotics saved his life and thankfully he has not had side effects from them, not even a problem with yeast. In order to get rid of lyme, bartonella or babesia you need months of treatment. A few weeks here or there will not be enough to get rid of these infections and usually multiple antibiotics or anti-malarial medicine are required to get a patient better. I realize that you do not know if lyme or other tick borne diseases are involved but if you do learn that they are antibiotics can be administered in a safe way and they can help a child get their health back. I have had many discussions with Dr Jones' staff about this and they have had thousands of patients on long term abx for lyme. My son took rifampin for five months straight mon through fri. He has been on antibiotics now for two years straight and is finally symptom free thank God. He will probably be ready to stop his treatment soon. The reason it is so important to properly treat lyme is that it can ruin a child's health, affect their cognition or even kill them. If the child goes on to have children and has untreated tick borne infections it can harm the fetus. That worries me a great deal so I really want them to get rid of this for good. Dr. Jones is an expert on this and has watched generations of lyme patients grow up and have kids of their own. Apparently latent lyme infections can resurface with a vengeance during times of hormonal change such as puberty or menopause. I don't want my kids to go through this so I am willing to have them treated for long periods of time. Lyme or bartonella are much worse for you than long term antibiotics are. There are lyme practitioners who treat lyme without antibiotics. I really don't know if this approach is as successful as the antibiotics but that is also another option. Some use herbs and antibiotics and/or energetic medicine.

[peglem]

lyme mom

Posted Yesterday, 10:44 AM

I never in a million years dreamed that my kids would be on long term antibiotics either. I also thought that long exposure to antibiotics are bad for you but that was before I knew anything about Lyme Disease. Long term antibiotics are not bad for you if you have a life threatening infection. Misdiagnosed for at least a year or more, my son developed Bells Palsy, which is when half the face is paralyzed. In some ways we were lucky b/c the facial paralysis got our attention and he finally got diagnosed. At the time I had no idea what lyme was. By the time we knew he had lyme he was very ill and needed a picc line to stop the spreading infection. The picc line wasn't even enough to stop the horrible headaches so they suspected bartonella and added rifampin. THe headaches finally receded with the rifampin. THose antibiotics saved his life and thankfully he has not had side effects from them, not even a problem with yeast. In order to get rid of lyme, bartonella or babesia you need months of treatment. A few weeks here or there will not be enough to get rid of these infections and usually multiple antibiotics or anti-malarial medicine are required to get a patient better. I realize that you do not know if lyme or other tick borne diseases are involved but if you do learn that they are antibiotics can be administered in a safe way and they can help a child get their health back. I have had many discussions with Dr Jones' staff about this and they have had thousands of patients on long term abx for lyme. My son took rifampin for five months straight mon through fri. He has been on antibiotics now for two years straight and is finally symptom free thank God. He will probably be ready to stop his treatment soon. The reason it is so important to properly treat lyme is that it can ruin a child's health, affect their cognition or even kill them. If the child goes on to have children and has untreated tick borne infections it can harm the fetus. That worries me a great deal so I really want them to get rid of this for good. Dr. Jones is an expert on this and has watched generations of lyme patients grow up and have kids of their own. Apparently latent lyme infections can resurface with a vengeance during times of hormonal change such as puberty or menopause. I don't want my kids to go through this so I am willing to have them treated for long periods of time. Lyme or bartonella are much worse for you than long term antibiotics are. There are lyme practitioners who treat lyme without antibiotics. I really don't know if this approach is as successful as the antibiotics but that is also another option. Some use herbs and antibiotics and/or energetic medicine.

I'm not afraid of long term abx, per se. My daughter has been on abx for several years now. It's the reaction she has while on rifampin/augmentin- she feels lousy (for the whole 2 weeks) and PANDAS rages resurface big time. This may be because she gets super yeasty w/ the augmentin- even with diflucan and probiotics. I'm willing to put her through it for a few weeks because what we see afterwards is pretty good...but months and months of that...I just don't have the courage and fortitude to do that, especially since we really have no way of knowing if she really does have Lyme or coinfections. Her development has been so messed up for so long, we wouldn't even know what "cured" looks like. We have seen some amazing improvements from various treatments over the last year. But, we don't know if that's as good as it gets. With her communication problems, we are basically guessing what is going on with her from her behaviors. Input from these latitudes forums helps me make better guesses, but it really is all experimental.

The scariest thing for me is that she will have some real medical emergency (appendicitis, cancer, etc) and we'll never know until its too late. Also have the menstrual cycle hormone fluctuations that toss another variable in there to make it difficult to know what's going on.

[sf_mom]

I definitely feel for your situation. Its a tough call when your child is unable to verbally communicate!!! It was when my then 2 1/2 year was grunting, point and only using the word 'up' because all she wanted to do is be held.

 

I know you have a really great Dr. but I couldn't help but notice Dr. Bhakta talk on Autism and Lyme and she is only in LA. Perhaps if you should ever investigate Lyme further she might be the one to contact.

 

http://www.lymeinducedautism.com/eclectichealingapproach/antibioticprotocol.html

 

-Wendy

Edited September 5, 2010 by SF Mom