Lyme, PANDAS, and one exhausted mama

[MichaelTampa]

mama2alex,

 

So many people get diagnosed with lyme with a much more "negative" looking IGeneX test than your son. I had band 41 positive and band 39 IND and the rest negative, and also negative for lyme, bartonella, and rickettsia. Yet my LLMD diagnosed me with lyme and bartonella. It is just very common to not look full-blown positive before treatment. I am only 2.5 weeks in to lyme treatment, so nothing too much exciting to report, but I'm sure I'm on the right track. I also had a very high CamK (183 I think), and experienced some improvement with antibiotics for PANDAS, but it was very limiting, so I'm much further along with lyme treatment now.

 

Sorry if the treatment for lyme seems overwhelming, but it really looks like that's what it is. Agree an ILADS MD might arrange the best plan. There are plenty of things you can do in the supplement category to really help the treatment work better. It would be very useful to read the "treatment and diagnostic hints" available from the ILADS website, lots of helpful advice there on supplements near the end of the document.

 

One last thought for now, if you can afford it, unless you are just overwhelmingly healthy, you might also consider getting a western blot for yourself.

 

Michael

 

Michael,

what is the treatment that you are doing now, what abx? Is this different than the clarith for myco p.? how did that wound up turning out? did dr.k. say anything about that .. or this?

 

 

For PANDAS, I took 1 month of clarithromycin (biaxin) for mycoplasma pneumonia. I had some really noticeable anxiety and sleep related improvement about 1 week in that probably has stuck, as best as I can figure. After a week or so break, I took 1 month of augmentin, which did nothing for me other than start diarrhea which I still have today, 2 months after I started it. Dr.K. considered the clarithromycin a failure because after 2 weeks it didn't make me a completely different person, basically totally better, and recommended moving on to augmentin at that point. I wanted to "lock in" the benefits so went the full month. I really was supposed to report back to Dr.K. on how the augmentin worked, but haven't. By then, it was looking more clearly like lyme and my life was too hectic then and I didn't take the time to tell him, so not sure what he'd think. At some point in his plan, I was supposed to use prednisone steroid burst to confirm at least it's inflamation related, but then that can be dangerous for lyme cases.

 

For lyme, I have been taking 1000mg of intravenous abx called ertapenem, from a ball called an Invanz ball. As adjunct, first two weeks I also took Tindamax (750mg 2x per day), then switched to two weeks of Alinia (500mg 2x per day). I am in week 3 now, first week of Alinia, but the plan is switching back and forth between Tindamax and Alinia in 2 week periods. I am continuing antifungals nystatin and clotrimazole to fight the candida/fungus/whatever, but they had me stop fluconazole just to save my liver, which is doing okay, but just precautionary. Testing indicates these things are doing good things, along with various herbs/supplements, but not much symptomwise that great to report at this time. In a few days we are going over IGG results to see if I had a poor enough reaction to strep pneumonia vaccine to qualify insurance-wise for IVIG.

 

Michael

[MichaelTampa]

Just to clarify some of what I just posted, the tindamax and alinia are some of the adjunct treatments frequently needed with lyme. The lyme can change form into cysts and whatnot to avoid the antibiotics, so antibiotics alone in many cases isn't enough. Alinia supposedly kills the cyst form, while abx will kill the active form, so when you take them together you have a better chance of really getting somewhere.

 

Michael

[smartyjones]

michael - sorry, i somehow missed your lyme diagnosis. can you tell me when/how you got that? i've found your treatments/practicioners interesting. esp your thoughts about light in stores, etc.

 

my son did seem to have irrational ramps in flourescent lighting. i, myself, get migraines and have sometimes had one come on suddenly in flourescent lighting stores. it's been a few times that i've wondered if that could be a trigger. my son was diagnosed about 9 weeks ago with lyme. we went to that particular dr b/c i didn't think he was necessarily healing - just seemed a collection of good and bad days.

 

thanks.

[MichaelTampa]

michael - sorry, i somehow missed your lyme diagnosis. can you tell me when/how you got that? i've found your treatments/practicioners interesting. esp your thoughts about light in stores, etc.

 

my son did seem to have irrational ramps in flourescent lighting. i, myself, get migraines and have sometimes had one come on suddenly in flourescent lighting stores. it's been a few times that i've wondered if that could be a trigger. my son was diagnosed about 9 weeks ago with lyme. we went to that particular dr b/c i didn't think he was necessarily healing - just seemed a collection of good and bad days.

 

thanks.

 

 

Back when lymemom appeared asking about if any PANDAS kids had bartonella (a lyme coinfection), was when I first really "heard of" lyme disease and started thinking about it for myself. A list of bartonella symptoms reads a lot like a list of PANDAS symptoms. Over a period of a couple/few months I managed to get tested and eventually an appointment with a lyme specialist (ILADS member) in my area. The diagnosis was just about 2 months ago now. I got IGeneX tests for specific thinks like lyme (borrelia), bartonella, and rickettsia, all of which were negative, and the IGeneX western blot, which I discussed earlier in the thread. I also got CD57 test from labcorp and that was very low, indicative of lyme. As lymemom said, it is of best use for adults who have had whatever current problems they have, for a while, for, an adult with chronic lyme (borrelia), this will be depressed. Sensory sensitivities, particularly light and sound, seem to be prevalent with lyme, and of course, joint pain is too. I don't have joint pain, by the way, and there seems to be much that is individual in how lyme looks in a particular person. I really consider the wireless sensitivity to be part of sensory sensitivity, but I don't know how anyone else looks at that.

 

Besides the lyme drugs, I am also doing many herbs (to kill bugs) and specific enzymes (zyactinase, serrapeptase, nattokinase) to digest the "biofilm" that the bugs live in, and far infrared sauna (to remove heavy metals that also make up the biofilm), and taking homeopathic "arsenicum album" to reduce overall hypersensitivity as that is perhaps my "personality type". I didn't self-prescribe the arsenicum album, I did go see a classical homeopath (these are available in health food stores for the brave people that want to just try things that way). I am using some Gia Wellness products (pendant, home harmonizer, chips to put on electronic devices) to also help sensitivity to EMF's, they are helping, but I don't know that they help with fluorescents, as the problem there may be more visual ... it is difficult to tell.

 

I really believe the things I am doing are helping, I only wish I could report more immediate results. I am being forced back to work in two days, and am not ready, but I need to do it or else, as they say.

 

Michael