Lyme too!

[cobbiemommy]

My DS, 11, was diagnosed with Lyme, actually Borelliosis, yesterday. He also has been diagnosed with PANDAs and had HD IVIg with Dr. K. on July 9 & 10. As we drove home with the scrips for the antibiotics in my hands, I thought about how they were like GOLD! We see a very capable and caring doc. He has treated over 7000 cases of Lyme in his 22 year career. He seemed to think that Ryan would have a very good outcome and return to normal (whatever that is). We think DS was bitten at around 3 years of age. Personally, I think he already had PANDAS, his immune system was already crap from being sick so many times as an infant, and that the tick bite just put him over the edge.

 

Couple of things discussed were:

 

1) Allergy shots and allergies: Doc advocated a wheat free/gluten free diet. Already tried it once for over 2 years, but we are thinking about it. Now that he has had IVIg and gets antibiotics, it might put him over the top! He advocated allergy shots or allergy drops, but I said no. Dr. K. had told us no on the allergy shots, because it is stimulating to the immune system. We had previously done these for 2 years and they seemed to make things worse!

 

2) Did not recommend any vaccines; even said that some children had bad reaction to tetanus shot. Something to think about.

 

3) He said he was not impressed with IVIg for PANDAs, but he is not a PANDAS specialist. He kept talking about persistent strep in the body. I said the strep is not always the problem, it is the antibodies. We left the discussion on that point.

 

4) Did advocate getting son's tonsils and adenoids out if things did not progress with the PANDAS. Even gave me the name of a good ENT. Again, something to think about down the road.

 

DH and I stopped at the pharmacy on the way home and filled the scrip for the new antibiotic and gave son first dose last night. Why wait??

 

Cobbiemommy

[philamom]

My DS, 11, was diagnosed with Lyme, actually Borelliosis, yesterday. He also has been diagnosed with PANDAs and had HD IVIg with Dr. K. on July 9 & 10. As we drove home with the scrips for the antibiotics in my hands, I thought about how they were like GOLD! We see a very capable and caring doc. He has treated over 7000 cases of Lyme in his 22 year career. He seemed to think that Ryan would have a very good outcome and return to normal (whatever that is). We think DS was bitten at around 3 years of age. Personally, I think he already had PANDAS, his immune system was already crap from being sick so many times as an infant, and that the tick bite just put him over the edge.

 

Couple of things discussed were:

 

1) Allergy shots and allergies: Doc advocated a wheat free/gluten free diet. Already tried it once for over 2 years, but we are thinking about it. Now that he has had IVIg and gets antibiotics, it might put him over the top! He advocated allergy shots or allergy drops, but I said no. Dr. K. had told us no on the allergy shots, because it is stimulating to the immune system. We had previously done these for 2 years and they seemed to make things worse!

 

2) Did not recommend any vaccines; even said that some children had bad reaction to tetanus shot. Something to think about.

 

3) He said he was not impressed with IVIg for PANDAs, but he is not a PANDAS specialist. He kept talking about persistent strep in the body. I said the strep is not always the problem, it is the antibodies. We left the discussion on that point.

 

4) Did advocate getting son's tonsils and adenoids out if things did not progress with the PANDAS. Even gave me the name of a good ENT. Again, something to think about down the road.

 

DH and I stopped at the pharmacy on the way home and filled the scrip for the new antibiotic and gave son first dose last night. Why wait??

 

Cobbiemommy

 

 

Thank you for the update. Can you mention what Lyme testing was done? Thru Igenex? Also, what abx was your son put on? Thanks again!

[GraceUnderPressure]

3) He said he was not impressed with IVIg for PANDAs, but he is not a PANDAS specialist. He kept talking about persistent strep in the body. I said the strep is not always the problem, it is the antibodies. We left the discussion on that point.

I'm so glad to hear that your son's problems have been found & are now able to be addressed!

 

I have been wondering about the strep antibodies vs. persistent strep in the body myself. I had read somewhere previously that strep can form a biofilm to adhere itself to a mucosal wall & protect itself from the immune system as well as other competing microbes. We have had some up & down experiences with dietary approaches that have made me suspect that something is being affected by it (something besides yeast/candida). I know at this point there are some doctors experimenting with protocols to get rid of biofilm bugs, but I have no idea which doctors or how well their approaches are working. Anyone here know?

[thereishope]

Glad you found another piece to the puzzle. So, what antibiotic did the Lyme specialist give?

Edited August 24, 2010 by Vickie

[cobbiemommy]

The doc said we could stay on the prophylactic dose of Augmentin and add in Zithromax (start with 250 mg and then go to 500 mg). The thing is DS did the best right after IVIg with a dose of 875 mg. 2xday of Augmentin. We have a scrip for that as well, but we are supposed to start with the Zith, but if it stops working or plateaus, we switch to the Augmentin. DS had testing thru Igenex OVER A YEAR AGO, but two doctors told us it was inconclusive or "nothing really" . Current LLMD took one look at the labs and knew. UGH!!!!!!!!!!!!

 

Also, LLMD said son had dark knuckles, edema (swelling) in upper arms, one side of his mouth was slightly lower than the other, joint stiffness, large tongue, and slightly enlarged thyroid as well as cognitive problems.

[KeithandElizabeth]

I know that it is frightening to find out that your child has lyme disease, but it can explain why your child has not reached 100% with the typical PANDAS treatment and we have found that the correct antibiotic combo has really helped both our children to overcome their "PANDAS" symptoms.

 

Did your doctor give you a time frame for healing the lyme and did he mention testing for coinfections?

 

Elizabeth

[lyme_mom]

3) He said he was not impressed with IVIg for PANDAs, but he is not a PANDAS specialist. He kept talking about persistent strep in the body. I said the strep is not always the problem, it is the antibodies. We left the discussion on that point.

I'm so glad to hear that your son's problems have been found & are now able to be addressed!

 

I have been wondering about the strep antibodies vs. persistent strep in the body myself. I had read somewhere previously that strep can form a biofilm to adhere itself to a mucosal wall & protect itself from the immune system as well as other competing microbes. We have had some up & down experiences with dietary approaches that have made me suspect that something is being affected by it (something besides yeast/candida). I know at this point there are some doctors experimenting with protocols to get rid of biofilm bugs, but I have no idea which doctors or how well their approaches are working. Anyone here know?

Lyme spirochetes create a biofilm in the body and flagyl, tindamax or even anti-yeast medication like diflucan can be used to bust up the cysts so that the microbe can be killed.

[lyme_mom]

The doc said we could stay on the prophylactic dose of Augmentin and add in Zithromax (start with 250 mg and then go to 500 mg). The thing is DS did the best right after IVIg with a dose of 875 mg. 2xday of Augmentin. We have a scrip for that as well, but we are supposed to start with the Zith, but if it stops working or plateaus, we switch to the Augmentin. DS had testing thru Igenex OVER A YEAR AGO, but two doctors told us it was inconclusive or "nothing really" . Current LLMD took one look at the labs and knew. UGH!!!!!!!!!!!!

 

Also, LLMD said son had dark knuckles, edema (swelling) in upper arms, one side of his mouth was slightly lower than the other, joint stiffness, large tongue, and slightly enlarged thyroid as well as cognitive problems.

Good thing you figured this out. The mouth asymmetry could have turned into Bells Palsy, which my son had. WIth the right treatment you should avoid this. Most doctors are totally clueless about how to read those tests. It is outrageous but there is a war going on between doctors about whether chronic lyme even exists so it makes it very confusing for the non lyme expert. Infectious Disease Doctors are the wrong kind of doctor to see for lyme if they are subscribing to the Infectious Disease Society's guidelines for the diagnosis and treatment of Lyme (some are independent thinkers who understand lyme). Those ISDA guidelines are responsible for delaying the diagnosis and treatment of so many people like your child and it is an outrage!

[melanie]

sso your taking which antibiotics foe lyme?

[kimballot]

THank you for sharing this with us! I wish you all the best and am hoping the new ABX work well for you. You are great parents and your son is so fortunate to have parents that do not give up!

 

Please keep us posted on his progress.

[lyme_mom]

sso your taking which antibiotics foe lyme?

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

[Ellen]

Thanks for sharing this, Lyme Mom. In what way was Tindamax rough? Did you think it was helpful in any way? We had a consult for my son with Dr. Jones last week, and he began treatment for lyme/Bartonella with a combination of Tindamax (on weekends) and daily Minocycline in addition to his daily Zithromax. It is too early to tell if any of this is helping yet, but I want to have some idea of what to expect.

 

Ellen

 

sso your taking which antibiotics foe lyme?

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

[Ellen]

Thanks for sharing this, Lyme Mom. In what way was Tindamax rough? Did you think it was helpful in any way? We had a consult for my son with Dr. Jones last week, and he began treatment for lyme/Bartonella with a combination of Tindamax (on weekends) and daily Minocycline in addition to his daily Zithromax. It is too early to tell if any of this is helping yet, but I want to have some idea of what to expect.

 

Ellen

 

sso your taking which antibiotics foe lyme?

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

[lyme_mom]

Thanks for sharing this, Lyme Mom. In what way was Tindamax rough? Did you think it was helpful in any way? We had a consult for my son with Dr. Jones last week, and he began treatment for lyme/Bartonella with a combination of Tindamax (on weekends) and daily Minocycline in addition to his daily Zithromax. It is too early to tell if any of this is helping yet, but I want to have some idea of what to expect.

 

Ellen

 

sso your taking which antibiotics foe lyme?

My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

It caused really bad herxes for him. He felt like he was dying and even had trouble walking a couple of times. He took it for about five weekends per Dr. Jones. It may have helped or switching antibiotics may have helped (we made several changes at once). He is better now fortunately but still on antibiotics. Hopefully he will be able to stop soon. I will pm you.

[cobbiemommy]

3) He said he was not impressed with IVIg for PANDAs, but he is not a PANDAS specialist. He kept talking about persistent strep in the body. I said the strep is not always the problem, it is the antibodies. We left the discussion on that point.

I'm so glad to hear that your son's problems have been found & are now able to be addressed!

 

I have been wondering about the strep antibodies vs. persistent strep in the body myself. I had read somewhere previously that strep can form a biofilm to adhere itself to a mucosal wall & protect itself from the immune system as well as other competing microbes. We have had some up & down experiences with dietary approaches that have made me suspect that something is being affected by it (something besides yeast/candida). I know at this point there are some doctors experimenting with protocols to get rid of biofilm bugs, but I have no idea which doctors or how well their approaches are working. Anyone here know?

Lyme spirochetes create a biofilm in the body and flagyl, tindamax or even anti-yeast medication like diflucan can be used to bust up the cysts so that the microbe can be killed.

We are also starting Diflucan, daily.