Herxing? Will test be pos now?

  Hello.My son had the bulls-eyes in Sept. but wasn't diagnosed with Lyme because it doesn't exist in So. Cal. He was given Prednisolone for the "allergic reaction". 

He developed neuro/psych symptoms so I decided I should trust myself and did more research. I pushed hard for a test. IgG and IgM were neg. I have not seen the results yet.

He was given 10 days of amoxicillin to make me feel better . He started Fri. and by Mon. he had a fever - 2 days, followed by really low temps for several days, but he didn't perceive the coldness. Then when his temp went 'normal' he complained of being cold. Now he's missing more school because the fever is back.

Just ended the meds yesterday. He has also been on an antihistamine (not Benadryl). He did one Epsom Salt bath so far.

I called the Dr. to request a re-test. I believe what I've been told, and have read, that this is Herxing.

 

Will the bacteria be in his bloodstream now?

The Dr. didn't find it odd that he had the rash but NO immune reaction to Lyme. I think she has decided I didn't really see bulls-eyes.

What would be the best test under his current circumstances? Looking for Lyme DNA, or Lyme chunks, or immune reaction? 

I'm waiting on a return call.

Is there any realistic alternative answer for the combination of symptoms?

I have an appointment with an LLMD coming very soon, but the $550 fee is not something I can sustain. If I can prove Lyme I may get insurance help otherwise I'm SOL when the cc is maxed out.

 

This may sound a bit negative, but is just the way this goes.

There's a good chance that it will come back negative again, depending on which tests and lab they're using. He needs to be tested through IGENIX and even then, it may come back negative. LD is a clinical diagnosis.

He needs to see the LLMD. It's imperative that he does and the longer he goes w/o adequate treatment, the worse his symptoms will get.

The fever could either be from herxing or from the lyme disease or a co-infection itself.

Check with the groups Trav recommended to see if you could get any assistance. After that beg, borrow, steal (ok, well maybe don't steal, LOL).

Hi Cal Cat, How did the appt. with the LLMD go??? I hope that it went well and you got good info.!

Hi, I'm hoping I didn't totally blow it but I had a weird feeling about the whole situation going in.

The doctor's new patient packet asked for a credit card number and authorization in advance of me meeting her, for a $550.00 first consultation. I was asked to sign an agreement as to what treatment I wanted, before the consultation, including a signed permission for IV treatment.

Even though she does not take insurance I was asked for copies of my insurance cards. I found that strange too.

I went in with my mom, (who isn't especially convinced by my research) because my car is dead (big financial issue too). We got there early but we waited for just over one hour past our appointment time then left. At half an hour we were told at the front desk it might be soon, for her to finish with the previous patient, but after that patient left we still weren't addressed.

I wonder, any other leads out there? I know this is going to cost me and that insurance is dubious at best, but I can't be paying a person up front then not know if I'll even get help.

The infectious disease dr. at our insurance carrier has agreed to test again but I know that may be of no help. Add to this that over 1/3 of my son's class is out sick this week so I don't know if he was herxing or just has what the rest have.

I'd like to think he has begun an immune response to the Lyme because that would indicate it's not just hiding out now and may be accessible.

We are leaving for almost a week for a job I have so I'll be out of touch.

I am nervous about my decision to leave the dr's office and I'm still working on getting him care. We may get the retest today but it will almost certainly be the Western Blot IgG and IgM again.

We have an appt, today to check out some spots he has - not itchy - just small red spots that have been coming and going for 3 days. Because they went away so quickly I didn't worry, but now there are new ones I need to find out more.

I hate to tell you I left, but It just felt so wrong being there at that point. I am not giving up of course. I saw the rash and I see how he changes. I will get him what he needs, and I'm still studying. Sorry I don't have better news.

     Hi,  sorry for the slow response, especially since you were so quick. I went out of state  for work for a week, followed by being sick, followed by a dead computer! Yikes.

     I left the appointment due to the combination of office policies and the delay which was not well addressed. I was told it was due to the patient before us, but when she left we were still left sitting with no idea when we'd be seen, for another 15 minutes or so before we left. The huge payment is an issue, and I started to feel like I was being played. Perhaps basic communication wasn't a good requirement. I still don't know.

     When I asked for the Dr.'s school name, or any way to check if she was for real I was told she was on TV. Well, I've been on TV but that doesn't make me a soldier's wife. The whole combination gave me the willies.

     We go to a neurologist tomorrow and I have asked the infectious disease Dr. to send the new test to Igenex as suggested. I'm still keeping my fingers crossed that I'll get at least some more help through insurance. I fall way down the income scale & I'll run out of credit to spend in very short order.

     I do want to try some herbal treatments so that will be my next foray into research. What do you use? Any sites you recommend?

     I spoke with the CDC today trying to find any reputable source showing  a non-Lyme bull's-eye rash but I still come up with the rash as definitive. Rhetorical question here - Why is the assumption "That can't be a Lyme rash, we don't have Lyme" not, "Oh boy, that's a Lyme rash, we must have Lyme now!"?

     There are multiple cases of dogs diagnosed with Lyme in this, and neighboring counties - and you can't see erythema migrans through fur very well! I have a real problem with hide-bound, closed minded people. Ack!

     I'm usually a very upbeat person. This is so illogical that it's frustrating the heck out of me. And more, when I read what has happened to so many people, and how much worse it can get I get pretty scared. I feel lucky my son had the rash but apalled it was dismissed! Isn't it supposed to be the one thing that helps us avoid the nightmare of missed diagnosis? Ack again.

     I am back on the trail to treatment.

 

Thank-you. I wish you miracles and health in abundance. I'll be back later .

I looked at the site briefly after getting opugirl's message. I'll dig in more for doses and precautions. I should have lots of sources out here. I may start growing those which I can, too.

Any book titles with the chemical info on the herbs? I'll check my own library for technical stuff, but I'm guessing there's Lyme specific herb books.
I like the most precise, detailed herb books with chemical compounds and where possible, the history of studies done on each plant, besides the traditional uses. However, whatever there is, is a good place to start.

I have a serious book addiction and herb books are one of my favorite categories.

We saw a neurologist today and he's going to test for PANDA, and epilepsy. He didn't know that Lyme Neuro symptoms come and go at random, but he was open to reading a print out I brought.

He had a very positive opinion of the infectious disease Dr. Could be a catch 22. He says she has made bold decisions(sp?) in treating unusual things so lets hope she's not totally closed to the idea of Lyme. It was pretty hard to tell.

He says he has Lyme patients. I did not ask where they got the infection. Missed opportunity.

I asked a vet if any of his horse patients have had Lyme. He says he suspects it, but it's hard to prove and customers have been unwilling to go to the expense.

Step after step. I'm considering going on a bug hunt at our camp site to see what I can net.

I'm sick with the gnarly cruds so I'll be going to bed soon. Nite-nite.

Stephen buhner goes through each herb that he recommends in his book. I was able to get his book from my library.

As far as PANDAS and epilepsy, Lyme Disease and co-infections can cause PANDAS and epilepsy. It's just my opinion, but I wouldn't take those as acceptable diagnosis, especially since he had the bulls-eye rash. That rash is definitive for Lyme Disease.

Hopefully the infectious disease dr. will be open to it and start good treatment. Although they're few and far between, there are some good ID Drs. out there that know how to treat Lyme, Bartonella, Babesia, and other co-infections.

Also, see if the ID Dr. will agree to sign off on an IGENIX western blot and make sure that you ask for a copy of the results even if they say it's negative. That way you can see which bands were positive. If there are lyme-specific bands on it than you know, without a doubt, he has it. Although I guess with the bullseye, you kind-of already do.

 Not so open minded as I hoped. Retest was negative, but I'm working on getting copies. No, they won't send a test to Igenex.  Grrrr.

I was given a phone number of a different Infectious Disease Dr. by mutual friends. I should be getting a call tomorrow. He doesn't deal with children but I'm hoping he can steer me on to more help.

The friends are both in the medical field and were shocked by my story. Their question was, if Lyme was possible, why not treat it just in case.

 But then, Lyme couldn't be possible because 'there are no deer in So. Cal!'  (Except maybe the 2 in the park a couple miles from my house where someone I know took pics this month! ( A doe and her fawn...)

The nurse-practitioner has Lyme patients of her own. She's a long way away from me but...

We still have the epilepsy test coming up but PANDAS and Wilsons were negative. I believe those results because the symptoms were not right.

However a different doc decided it's bi-polar after about 15-20 minutes. Nevermind the decline in writing ability or the moving pains, and the short term memory decline. Want some psychotropic drugs?

Thank goodness for the real friends I am lucky enough to have.

Thanks! I'll read up on that. I get results for the Epilepsy testing next week.