Sick, sick boy!

[nspiker]

OMG Elaine,

I feel for you and your son.  His reactions are so severe, it must be so difficult for you to witness what he is going through.  I wish I had some advice, but I don't.  Just know I am saying prayers for your boy….

Why is it that you can't get a hold of his llmd until next week?  Isn't someone on call for an emergency?  This seems to me like a crazy reaction from just doxy, when he was withstanding a much stronger protocol.  Also, I am surprised that he isn't getting relief from going off abx, that seems strange to me too.

Why did this new llmd switch the abx to doxy?  I guess whatever the reason is not important.

I hope you can get some answers quickly. 

xo, nancy

[Kim]

Hey Elaine,

So sorry to hear your son is this sick, especially over the holidays when doctors are a.w.o.l.

It could be so many things ~ Babs herxing, flu?  Getting too many doctors in the mix can really complicate things so I'd be hesitant to add more abx until you've talked to Dr. C.  Sure sounds like your son is hyper-sensitive and will need baby doses to start.

Best wishes that this settles soon…..kim

[Parisa]

Elaine,

It sounds an awful lot like a Babs flare to me with the loss of appetite, sore muscles, chest pain and night sweats.  They need to start him on regular Babs meds which unlike the Lyme meds need to be taken consistently rather than pulsed.  Some of the LLMDs don't pay enough attention to Babesia unfortunately so I hope your LLMD is really up on it.   

[JBJBJB]

Elaine,

OMG, is he still running fever!!!????. Poor kid. I feel for you, especially during the holiday time.

Before I started AP, I had a 10 straight day fever when I was on one anti-inflammatory medicine. The fever ran from 102 all the way up to 105. I had to go to ER. The doctor asked me what the medicine I took, I told him (sorry I forgot the name of it)…. he said I should stop it. The next day, I did not take it, my fever broke and I got better. I lost almost 20 pounds :cool::D. One week later, I started the same medicine again, the fever picked up again the same evening. I knew it was the medicine.

You are wise to contact Dr. C as soon as you can. Even if it is herxing, Dr. C should know. It's getting more scary as the day goes on with fever.

Hugs,

JB

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

I do have some good news, he actually ate lunch today instead of sleeping all day. I skipped his morning cefzil and also last night tried the baking soda and water idea from AF. So who knows how long this good moment will last, haven't taken his temp again to see if it is climbing back up as ususal.

By the way, when I was very sick, I had “Ensure” energy drink to get me through the day. Perhaps you could get a few bottles for him. Icy cold ensure tastes very good.

Hang in there, and he is in my prayers.

JB

[Parisa]

Elaine,

My husband did artemisinin way, way back in the beginning of his Lyme or rather Babs treatment.  It sure didn't do any miracles for my husband but I know some people get results.  I believe my husband took it for about 8 months.  Zithromax was rotated in and out and after about 4 months of that he did a 4 month course of Mepron. 

Thinking Babs had been dealt with we just continued with the Lyme protocol.  We truly didn't realize how much Babesia was a factor in my husband's disease at that point (besides isn't Lyme disease enough? Why do we have to think about other diseases/co-infections?).

My husband continued to decline and we finally switched to IV antibiotics and IVIG.  About 8 months after discontinuing the Mepron, he restarted Babs treatment and my husband did one month of malarone, then about 3 months of IV Flagyl and malarone, then 4 months of IV Zith and malarone, then about 3 months of IV Invanz with malarone and we topped it off with  three months of IV Clindamycin and Qualaquine.  I know this sounds pretty intense but my husband really responded well to this and he has now been off of Babs meds for over 5 months with no relapse which we take to be a good sign.

(Oh, and my husband was considered complicated and/or interesting by every doctor he met)

[JBJBJB]

Elaine,

How is Ryan doing? Is his name Ryan? I am sorry I forgot.

Hope his fever is gone today. Let us know how he is doing.

Thinking of him.

JB

 

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

My husband does not or has he ever been supportive. So I am always on my own except with these boards.

If your husband is a mainstream medical doctor like my mom, he would not be supportive.

Elaine, has your son tested mycoplasma infection? I am so sorry his fever is still there. So scary.

Prayers are sending your way!

JB

[nspiker]

Elaine,

I am so sorry.  Your son has been on my mind too and I was hoping to hear good news.  Can you, or do you have a local doctor that can work together with your llmd in case of emergencies like this?  Especially, in light of the fact that your husband is not supportive of abx.  It must tear you apart to have your son feeling so horrible, and then going it alone, with no one to contact.  Thankfully, I have a primary doctor that has gone above and beyond in helping me in the past.  You need to get a support system that can help in cases like this. 

I bet you are right about the zith/flagyl protocol.  That makes more sense than a reaction from doxy.  Although, I know some do react , but to me, doxy is such a benign drug.  If there is anything positive from all of this, then you know that zith/flagyl is making a difference. 

I'm sure Monday am can't come soon enough….
nancy

[nspiker]

Elaine,
I'm sure your husband is concerned, and it is difficult for him to see his son suffer.  Why is it always “us moms” that are the tough ones, when it matters?  One day, hopefully soon, you can both rejoice in your son flourishing and healthy!

tick tock, tick tock…..
nancy

[Davit]

Just a thought.

The tetracyclines do not all work the same and do not work for the same problems. It could be that minocin doesn't work because it's the wrong Micoplasma and Doxi does because it is. It could be the dose is too high. It is definetly a case for the Doctor and I hope you can see him soon.

[Roz]

Dear Elaine,

JB is right about the controvery over MD's and Lyme, I have had in the family as well.

Are your Docs for son in agreement the infection is in his heart???

Hang in their, Roz

[Roz]

[user=379]Elaine son w/MCTD[/user] wrote:

Hi Roz,

When he was diagnosed with pericarditis it was before I had the labs done for Igenex. The pericarditis is really what prompted me to look further, he also had a little blood in his urine last fall which I found suspicious.

So in Jully I took him to the PCP for cough and chest pain and he did an xray and realized his heart looked a little larger than a previous x-ray so he got him into a cardio the same day.

Then the cardiologist  did an echo and EKG and said no major changes from the one done in March for his hypertrophic cardiomyopathy but from the exam determined he had pericarditis. Once he heard my son had MCTD he wanted nothing further to do with him.

 They think OH! autoimmune call in the rheumatologist there is nothing further I can do. So I pressed him further and said well if this was anyone else how would you treat. He said with ant-inflamatories and they would look for an infectious cause.

 I said that is what we believe he has is an infection and that is why we seek out doctors willing to treat the infection. He said what are you going to do get on a plane and fly to California? and I said “yes, if that is what if takes that is exactly what we will do”.

Actually I took him to see Dr S in Chattanooga and he added the zith and flagyl.So I guess I will see what happens on Tuesday when he sees his regular cardiologist and not one of his partners.

Will keep you posted.

XX,

Elainethe

Dear Elaine,

You are much stronger than you think.

I was the one very ill and my poor son, who was 8 years old at the time it started had to take care of me.:(

In my case my Lyme said you are in trouble and worte a note to my Cardio.

Docs have to dot their are I's and cross their T's right? 

This is where you, as a mom have to think risk and benefit. NOT EASY. You have to be is advocate in other words.

This is just a though, but if I was you I would write a HX and the SX., list on 2 separate sheets of paper. Keep the orginal for myself and give them a copy of both.

Keep in mind that they only study Tick born illness for ONE day in Med. school. You might want to keep an open mind about IV therapy for him. A good MD that knows how to fill the paper work out right, can write it out so he does NOT have to have any kind of line.

If you have any questions I will be more than happy to answer any for you.

Much Love, Roz
 

[Roz]

Hi,

Yes, HX=history. Address it to each Doc. and date it. Their biggest fear is a law suit.

One thing I kept in mind when I was in really rough shape, was for every problem their is a solution. I would tell my Docs that.

The Cardio MD I deal and have had to deal with is not Lyme Literate. But he did put a team of MD's on me. He became very open to the infection connection as well, because of such a drastic difference in my Cardio tests at a short time.

Make sure you keep every Cardio test on your son, so they can use them to compare.

Cadio Docs have alot of influence in the medical field, at least that is what I saw.

Stay Strong, Roz

[nspiker]

Hi Elaine,

That was a smart move to switch to oral clindamycin, since he does so well on the IV's.  I'm assuming he is able to take it orally, with none of the side effects.  Let us know how he's doing today; sounds like it may have made a significant difference if his fever is down, and no night sweats.

I don't know about you, but I wonder why clindamycin is so effective for many of us.   I had posted a few weeks ago about wanting more frequent clindamycin for myself because it makes such a big difference for me, as it does for your son.  I don't understand, if an antibiotic like clindamycin is so effective, and there are no side effects, why doctors are reluctant to prescribe more often then a few days a month.  Parisa's husband has taken it daily for months with great results.  If your son can “stomach” the oral clindy, that is a great option for him. 

Hopefully this new llmd will be able to sift through this and come up with a solution.

xo, nancy

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