philamom

My daughter's llmd is recommending the addition of Minocin 50mg once daily. Does anyone have any experience with this antibiotic? Thx-

Infectious Disease specialist agreed, tonsils need to come out! And he gave me order for a whole bunch of bloodwork to look into Lyme and co-infections, plus he wants me to have and Echo to make sure my heart is ok. Yikes! Was that a misprint--did you say Infectious Disease Specialist. Way to go!! I think that's awesome, especially checking the ticker!!

Jag- I'm not sure...I think Bart is most associated with chronic neuro-psychiatric symptoms. I also think it's the most common co-infection to have (most people with lyme also have a co-infection). I also recall him saying my dd's persistent GI issues were probably from Bartonella. Or maybe it was just because we had two cats! It's a lot to ingest during the appt. Melinda

My daughter had a positive Western Blot but negative co-infections with Igenex. My dd's llmd thought she had Bartonella by examining her and going over symptoms. He ran it again with another lab (Specialty lab) and it came back positive. He also ran a TON of labs thru Quest, which showed positive RMSF (IgG).

Basic Lyme Panel is $260.00 (Western Blot Igm/Igg and Lyme IFA). My daughter's llmd doesn't like the lyme IFA, so he recommends just the Western Blot IgM/IgG at $200.

IGM Western Blot 100.00 (test #188) IGG Western Blot 100.00 (test #189) Complete Lyme Panel (Western blot IGM/IGG, PCR Serum & Whole blood) 475.00 *needs to be off antibiotics (I think) Co-infections (Western) 660.00

Sending now.

Jodie- I would be happy to attend a local lyme support group with you! They have monthly meetings where I'm located, but I don't mind traveling. Hang in there! Melinda

Jodie- thank you for sharing the details of your appointment with us! Did Dr. C recommend any local companies to inspect for mold? If so, could you please pm the information to me. We had some flooding in our house and I would like to have a mold inspection done (on my to-do list). Thanks again for the post! Melinda

I want to blow kisses at the screen actually! I totally ditto your opinion. We wasted 30 grand with the doc's fees and IVIg fees not covered before we found out about Lyme.The worse was putting little DS thru all that trauma. Im trying to get Dr T to run reliable lyme panels not just quest before a PANDAS diagnosis. Many of these antibiotics treat Lyme and co infections too so when we switched to Biaxin it was a great reduction of his symptoms because Biaxin is also used for Lyme and Bartonella. Zithromax didnot work for us either for two reasons Dr Jones told me- Zith can have neuro side effects in some children and make the neuro symptoms worse and the liquid Zith has the Red dye in it which can cause neuro issues in some kids. So we stopped and started Bactrim instead as per Dr Jones at that point. Actually, I was referring to the Augmentin in our situation. My daughter is currently taking Zith & Amox (and weekend cyst buster) for her Lyme. This time when we started the Zith for the lyme, I knew about the herxing, and didn't jump ship. My dd is doing quite well on her new abx regimen. It's really not a certain abx, but usually a combination that are needed at the same time. That's my regret of not getting an earlier diagnosis.

After my daughter's first IVIG in June 2009 she was placed on Augmentin. We saw some improvement but after 3 months we decided to try Zithromax. My daughter's OCD increased. I switched back to Augmentin after 14 days. In February, we tried again and same thing happened. My dd stayed on different strengths of Augmentin until July 2010 when we received a positive lyme test. She was placed on zithromax (yes, she had herxing at first) and 8 weeks later added in Amox. I wish I would have done the Igenex WB IgM/IgG for $200 18 months ago. It would have saved me the cost of the first IVIG (not covered) and a year of prescription costs for what might have been the wrong antibiotic anyhow. So IMHO, run the lyme test (epecially before considering ivig). Please no throwing tomatoes at the screen.

Thanks Wendy! Just read it...very, very informative!

Basic lyme panel and co-infections can be done while on antibiotics.

Wendy- Can you forward me Dr. Corson's slide presentation? I plan to order some of the sessions this weekend, but wouldn't mind taking a sneek peek at what you have now. Thanks- Melinda

Mary- Can you recommend a Magnesium supplement for my dd(9)? Do you want to add a post "books recommended" in the pinned section. Melinda

It's wonderful to hear your whole family is enjoying life again!! Thanks for posting!

Mary- Thank you for sharing your family's personal journey with us! It's a tough decision on whether to start treatment while vaguely symptomatic or wait until your have no choice but to treat. Like you said, there is the fear of some later illness to cause major symptoms. I agree you are making the right decision. Hopefully, you will have fast healing! And like Elizabeth said, your post have been invaluable to our family as well! Thanks again!! When you say your daughter "had lots of progress early on and then a slow climb after"-- can you elaborate on that? I'm suprised at the results I'm already seeing with my dd's treatment plan. I'm also worried when it will be time to switch up the abxs. My prayers are with you and both daughters- Melinda

Emerson- I have an extra copy of the Ilads conference CD Rom--I'll send it to you if you pm me your address. The director accidentally shipped out two and told me to forward one to a doctor, if I would like. I think you'll have a better understanding of it than most doctors I know.

SF mom- I wish I had some advice to give you, as you have given me much encouragement! I can say someone recommended to us Nutramedix "Parsley" for detox--I have yet to order it though, so don't have any personal experience. Hang in there!!!!

Unfortunately, a positive IgM result can mean a new infection OR a chronic, persistent infection. Here are my dd's Igm results: June: positive 31,41,58; double positive 83-93; ind 34 & 39. Sept: positive 41,83-93, double positive 31, ind 34. We also now have a positive Bartonella Henselae thru Specialty lab and positive RMSF IgG thru Quest. We are seeing good results with new antibiotic protocol (including weekend cyst buster).

Yes, I had many phone calls with our insurance company before they finally re-submitted with the modifier code and covered both portions. It also happens with the Igm/Igg of co-infections. So don't stop fighting! I wish Igenex would just use different cpt codes .

Suzan- I think you are making the right decision to treat yourself first. Maybe you can begin them on some detox supplements in preparation, at least some good probiotics (which I'm sure you're probably already doing). I remember some here taking milk thistle, so I need to mention it can NOT be taken with flagyl. Hugs!

My daughter's CT scan diagnosed a sinus infection (PAN Sinusitus= all cavities blocked). Although, I don't think it can reveal if it's from strep or staph. We used Augmentin to clear sinus infections.

Nancy- My dd just took her 5th dose of Tindamax (Sat/Sun only). The first 2-3 weekends we had herxing. The last two times we saw much improvement (with the exception of the 5 day flair when exposed to strep).

Here are some of the blood tests to get you started: Immunoglobulin G Subclasses Panel 1,2,3,4 & A,G,M Immunoglobulin G, Serum Haemophilus Influenza Type B IGG Streptococcus Pneumoniae IGG AB (14 Serotypes) Anti-Streptolysin O DNASE-B Antibody CBC & Diff/Plt