I'm just finishing up my 180 injections of Rocephin prescribed by Dr. H. in Houston.

I was told I would last 3 weeks. Not so.

You can do it too.

Do you mind if I write back in the morning?

I'm a little tired tonight. I can answer any questions you might have.

If needed: My e-mail is [email protected]

Talk to you tomorrow.

So glad you can get some relief from taking the oral ABXs. I saw you were struggling horribly with orals, but I didn't have any good advice.

I'm sure you got a detailed handout of Injection Instructions from your LLMD.

Sorry if this information is all a repeat for you.

Here's kind of a checklist:

1% xlyocaine (Costco might be cheapest)

Actigall (get generic) take with meals; & this will bind with any supplements so take them away from the Actigall; protects gallladder.

Flagyl - cyst buster as directed by LLMD.

Alcohol pads; use 2 on the injection site; & use separate ones to clean the tops of the vials------if that's your med set-up.

If the needle touches anything prior to injection, but the INSIDE of the needle cover, it's contaminated.

Injections can be drawn up few days in advance & stored in refrigerator.

Be sure to let one sit out & come to room temp prior to giving; or just hold syringe in your hand for a few minutes to warm up.

Do you have someone else giving you the shots? I hope so.

My husband injected me & the best piece of advice was from a dear nurse at the ER (had gallladder attack which subsided)

who took the time to take an ink pen & circle the area on one or both hips where you can give the injection.

She gave my husband special instructions & this helped things along nicely.

This made all the difference in the world. We found lots of new sites to inject; less painful, too. I have lots of fat on hips which helps.

The faster the needle goes in, the less it hurts!!!

Do do you know any nurses close by who could give initial instructions/draw the shot location sites with ink?

I'll try to find that link about injection instructions for nurses recently posted.

It's easier in the beginning because the injection sites are new & fresh.

If you happen to eventually develop small knots under the skin----- prior to injection, rub your fingers over the knots to find them & then circle with a pen so NO injections are given there.

I can only tell you what my experience has been. As usual, I was instructed to rotate hips.

Be sure & inject very slowly (like slow motion) & stop injection for a few seconds if you start to feel pressure/pain; then slowly start again. This must be injected
S L O W L Y .

The shot giver must not be in a hurry. It's to be injected as though you had all the time in the world.

If it started to pinch or sting, I'd say STOP & I'd wait a minute. When I was o.k. then I said,----o.k. go ahead now.

You have to speak up; don't suffer in silence.

Don't rub the injection site after injection. Cover with dot band-aid.

My LLMD told me the bruising is from vasculitis caused by Lyme. Over time, the bruising will decrease as the vasculitis clears up.

I don't know what your Rocephin meds set up is. Mine were 2 GM vials of Rocephin. I had to dilute with 4.2 ml of 1% Xylocaine.

Daily I injected 1 GM or 2.8 ml per injection.

You want to keep that gall bladder relaxed also with Magnesium Citrate (taken away from ABX).

Try to keep some capsules of Magnesium Citrate by Allergy Research or Nutricology-----whatever you're favorite is, on hand.

Take according to bottle directions/away from ABX.

Also, the liquid Mg. Citrate from Wal-Mart's laxative section is QUICKLY absorbed. It's $1.12. (Do NOT drink the entire bottle down; that's only for lab tests!!!)

Just take small amounts to bowel tolerance.
1/2 tsp. to 1 tsp. depending on weight.

See Marnie's Magnesium Protocol.

I realize 2 GM Rocephin daily is a therapeutic dose, but I had to take what was prescribed to me------1 GM.

On 1 GM daily I didn't lose my gallbladder.

At first, you'll have a few nightmares because the med hits the brain.

Later that subsides & you'll have vivid dreaming.

Insomnia is my big problem. About 4 - 6 hours after injection, "divine" sleepiness takes over & I conk out without trying.

Normally, I never get sleepy ever-----without sleeping meds. So this is a definite sign something's happening.

After completing my Rocephin in 11 days, I'll be needing something else for my brain.

I have plenty of meds to last until appointment with new LLMD.

But I'm going to ask for Minocin or Bicillin LA & see what happens. My brain has been broken for a long, long time (13 years).

Hope I've answered some of your questions.
Maybe others will stop by with their tips.

Let me know if I can help.

quote:

---

Originally posted by RECIPEGIRL:
Hi jobrien,

So glad you can get some relief from taking the oral ABXs. I saw you were struggling horribly with orals, but I didn't have any good advice.

I'm sure you got a detailed handout of Injection Instructions from your LLMD.

Sorry if this information is all a repeat for you.

Here's kind of a checklist:

1% xlyocaine (Costco might be cheapest)

Actigall (get generic) take with meals; & this will bind with any supplements so take them away from the Actigall; protects gallladder.

Flagyl - cyst buster as directed by LLMD.

Alcohol pads; use 2 on the injection site; & use separate ones to clean the tops of the vials------if that's your med set-up.

If the needle touches anything prior to injection, but the INSIDE of the needle cover, it's contaminated.

Injections can be drawn up few days in advance & stored in refrigerator.

Be sure to let one sit out & come to room temp prior to giving; or just hold syringe in your hand for a few minutes to warm up.

Do you have someone else giving you the shots? I hope so.

My husband injected me & the best piece of advice was from a dear nurse at the ER (had gallladder attack which subsided)

who took the time to take an ink pen & circle the area on one or both hips where you can give the injection.

She gave my husband special instructions & this helped things along nicely.

This made all the difference in the world. We found lots of new sites to inject; less painful, too. I have lots of fat on hips which helps.

The faster the needle goes in, the less it hurts!!!

Do do you know any nurses close by who could give initial instructions/draw the shot location sites with ink?

I'll try to find that link about injection instructions for nurses recently posted.

It's easier in the beginning because the injection sites are new & fresh.

If you happen to eventually develop small knots under the skin----- prior to injection, rub your fingers over the knots to find them & then circle with a pen so NO injections are given there.

I can only tell you what my experience has been. As usual, I was instructed to rotate hips.

Be sure & inject very slowly (like slow motion) & stop injection for a few seconds if you start to feel pressure/pain; then slowly start again. This must be injected
S L O W L Y .

The shot giver must not be in a hurry. It's to be injected as though you had all the time in the world.

If it started to pinch or sting, I'd say STOP & I'd wait a minute. When I was o.k. then I said,----o.k. go ahead now.

You have to speak up; don't suffer in silence.

Don't rub the injection site after injection. Cover with dot band-aid.

My LLMD told me the bruising is from vasculitis caused by Lyme. Over time, the bruising will decrease as the vasculitis clears up.

I don't know what your Rocephin meds set up is. Mine were 2 GM vials of Rocephin. I had to dilute with 4.2 ml of 1% Xylocaine.

Daily I injected 1 GM or 2.8 ml per injection.

You want to keep that gall bladder relaxed also with Magnesium Citrate (taken away from ABX).

Try to keep some capsules of Magnesium Citrate by Allergy Research or Nutricology-----whatever you're favorite is, on hand.

Take according to bottle directions/away from ABX.

Also, the liquid Mg. Citrate from Wal-Mart's laxative section is QUICKLY absorbed. It's $1.12. (Do NOT drink the entire bottle down; that's only for lab tests!!!)

Just take small amounts to bowel tolerance.
1/2 tsp. to 1 tsp. depending on weight.

See Marnie's Magnesium Protocol.

I realize 2 GM Rocephin daily is a therapeutic dose, but I had to take what was prescribed to me------1 GM.

On 1 GM daily I didn't lose my gallbladder.

At first, you'll have a few nightmares because the med hits the brain.

Later that subsides & you'll have vivid dreaming.

Insomnia is my big problem. About 4 - 6 hours after injection, "divine" sleepiness takes over & I conk out without trying.

Normally, I never get sleepy ever-----without sleeping meds. So this is a definite sign something's happening.

After completing my Rocephin in 11 days, I'll be needing something else for my brain.

I have plenty of meds to last until appointment with new LLMD.

But I'm going to ask for Minocin or Bicillin LA & see what happens. My brain has been broken for a long, long time (13 years).

Hope I've answered some of your questions.
Maybe others will stop by with their tips.

Let me know if I can help.

Take Care,
Jan

---

Thanks Jan for all your advice- gosh, down to the smallest detail. I love the idea of marking my bottom with ink so I can inject around the same site. Since I work at a school, the nurse will show me more carefully how to do all of this.But I really want to do it alone so as not to be a bother to anyone- no kind husband around. I'll be on 1 gr every 3 days to start- but I already have diarehhea and I can't spell either! Besides the nightmares and dreams, any other side effects I should know about- all this stuff scares me! I stopped the orals since it blew apart my stomach and now I feel icky again! Please tell me it's residual and it'll all blow over soon! I sit here with my class in the computer lab and just wanna go home I feel so rotten- is this ever gonna end?!
Thanks for your advice!

Here are directions to give an IM injection:
http://nursing.about.com/c/ht/00/07/How_Give Intramuscular_IM0962934

Hope that site pulls up correctly.

It's from this thread:
http://flash.lymenet.org/ubb/Forum1/HTML/027704.html

Don't worry about the nightmares. That's really nothing big------just kind of noticed that out of the blue.

Have you tried some type of Psyllium Hulls in capsules by Nature's Sunshine at health food store for diarrhea. (no pesticides in their stuff)

Psyllium Hull capsules help with diarrhea OR with constipation; it's really strange that way, but it works----either way! (like metamucil)

My sister-in-law's father had diarrhea from CHemo & the doctor couldn't help him at all.

But my sister-in-law suggestd Psyllium Hulls & that did the trick.

I'm sure you're tired of hearing about probiotics. (acidophilus)

I sent my son in Austin some Pear1 probiotics in blue box by Enzymatic Therapy that are not affected by stomach acid.

They're (supposed to be) specially made to be assimilated in the part of the colon where it's needed most------it says this on the box. They're not cheap.

I have no idea if this is true or not, but their stuff is very good.

I would think you'd feel better just getting the diarrhea to stop, but I don't know if that's the whole problem there.

With diarrhea--------go easy on Magnesium.

With the first few injections, the Xylocaine will probably give you a burst of energy as it resets the autonomic nervous system (ANS).

The nerves have memory of every illness that hits the body. Disease gets the ANS all out of balance.

But since you're getting these every few days, it might take longer to get a lift
from them.

You are having the big time initial bacterial die off.

At home, can you do the BRAT diet------bananas, rice, applesauce & tea for diarrhea. Just a thought.

You might try a plain Calcium Citrate capsule by Solaray (4 caps = 1,000 mg) with NO Vit. D added to help diarrhea in an indirect way.

IMPORTANT:
You might start with 2 caps if you can tolerate with food. It might take the edge off your "feel bad" too.

Calcium is more constipating & magnesium acts more like a laxative.

Oh how I wish you didn't have to give your own shots.

Especially now, you're not feeling well.

If the school nurse can't help right now, would she know any retired nurse who could help you in the beginning?

Could the school nurse drop by your home & give them $?

Are there any community college nursing schools nearby?

Just trying to figure a way for you to relax & let someone else do the work.

Can your stomach take an anti-inflammatory like Motrin or will it burn your stomach?
(my husand can't take Motrin)

You must take MOTRIN with food ABSOLUTELY.

Many hear say not to use as it causes leaky bowel syndrome, but if you're trying to work this would take the edge off the flue-like feeling & help you make it through the day.

Careful not to over take dosage on label.

I call this Lyme flu because that's what it feels like-----the flu.

Tell us how any of us can help you.

Two heads are always better than one.

These words ring hollow today, but it will get better.

I do not know how people work & take their meds with die-off in the initial treatment.

I have to hand it you.

Yes, I received my Rocephin injections through ROCHE Patient Assistant Program.

You probably know a lot of this already, but for anyone else needing the info:

Unless things have changed...,

The physician has to initiate this request-----not the patient.

Dr. H. thought we would automatically be approved. We had insurance, but it would not cover the Rocephin inj.

We were initially rejected and that was that.

My husband was very disappointed (more than me) & called Roche and asked if we could provide additional information for subsequent review.

We worked so hard on that letter; for days.

We appealed to them on a financial basis & practically gave them a personal financial statement; briefly explained my physical situation & that we were sending our son through college.

It was the financial situation that seemed to help the most I suppose.

We told them how much we paid for insurance a month, how much we spent on meds; cheap house payment & told them we couldn't move to a cheaper place; stated other expenses in detail-----everything we could think of.

We showed the math on the letter that we could not possibly pay for $3,000 worth of Rocephin for 3 months.

My husband is a professioal writer, so he edited the letter beautifully.

(Patients are not suppose to contact Roche, but we did with a 2 minute phone call.)

We never told Dr. H. what we did.

Then weeks later I figured we would not get the Rocephin. But one day, Houston called & said come get your Rocephin.

I couldn't believe it!! It had to be overnighted to us & not l bottle was broken.

I was far sicker than Dr. H. realized.

The Rocephin turned my brain on like a light bulb so I finally figured out I wasn't crazy & I wasn't lazy.

The key is to have someone else give them to you. Sorry----I just can't give them to myself.

The supply was 3 months worth of 2 GM Rocephin.

Dr. H. said to take 1 GM daily which would last longer ------for 6 months.

I'm glad I did it. I had my chance.

I also know I have a long way to go. So I see Bicillin or Minocin in my future.

I will never get well on Zithromax.

Yes, it helped get the chronic pain down, but that's it. I can't function on it.

I just need a brain med.

If I can help more, let me know.

Take Care,
Jan

quote:

---

Originally posted by Lisa in Arizona:
Does anyone know the cost of the rocephin shots?? And how many do you give yourself per day. Also has anyone ever gotten them through Roche's patient assistance program?
Thanks, Lisa

---

quote:

---

Originally posted by RECIPEGIRL:
jobrien,

Don't worry about the nightmares. That's really nothing big------just kind of noticed that out of the blue.

Have you tried some type of Psyllium Hulls in capsules by Nature's Sunshine at health food store for diarrhea. (no pesticides in their stuff)

Psyllium Hull capsules help with diarrhea OR with constipation; it's really strange that way, but it works----either way! (like metamucil)

My sister-in-law's father had diarrhea from CHemo & the doctor couldn't help him at all.

But my sister-in-law suggestd Psyllium Hulls & that did the trick.

I'm sure you're tired of hearing about probiotics. (acidophilus)

I sent my son in Austin some Pear1 probiotics in blue box by Enzymatic Therapy that are not affected by stomach acid.

They're (supposed to be) specially made to be assimilated in the part of the colon where it's needed most------it says this on the box. They're not cheap.

I have no idea if this is true or not, but their stuff is very good.

I would think you'd feel better just getting the diarrhea to stop, but I don't know if that's the whole problem there.

With diarrhea--------go easy on Magnesium.

With the first few injections, the Xylocaine will probably give you a burst of energy as it resets the autonomic nervous system (ANS).

The nerves have memory of every illness that hits the body. Disease gets the ANS all out of balance.

But since you're getting these every few days, it might take longer to get a lift
from them.

You are having the big time initial bacterial die off.

At home, can you do the BRAT diet------bananas, rice, applesauce & tea for diarrhea. Just a thought.

You might try a plain Calcium Citrate capsule by Solaray (4 caps = 1,000 mg) with NO Vit. D added to help diarrhea in an indirect way.

IMPORTANT:
You might start with 2 caps if you can tolerate with food. It might take the edge off your "feel bad" too.

Calcium is more constipating & magnesium acts more like a laxative.

Oh how I wish you didn't have to give your own shots.

Especially now, you're not feeling well.

If the school nurse can't help right now, would she know any retired nurse who could help you in the beginning?

Could the school nurse drop by your home & give them $?

Are there any community college nursing schools nearby?

Just trying to figure a way for you to relax & let someone else do the work.

Can your stomach take an anti-inflammatory like Motrin or will it burn your stomach?
(my husand can't take Motrin)

You must take MOTRIN with food ABSOLUTELY.

Many hear say not to use as it causes leaky bowel syndrome, but if you're trying to work this would take the edge off the flue-like feeling & help you make it through the day.

Careful not to over take dosage on label.

I call this Lyme flu because that's what it feels like-----the flu.

Tell us how any of us can help you.

Two heads are always better than one.

These words ring hollow today, but it will get better.

I do not know how people work & take their meds with die-off in the initial treatment.

I have to hand it you.

How can we help:
Jan

---

Your advice and kindness are, as American Express says,Pricelss!! Thanks so much for taking the time to write all of this- some wouldn't bother. Isn't your Dr. H. in Houston retiring soon or do I have the wrong person? I see a NP in Austin.
Jean

Yes, my son attends UT Austin. He was positive both Bowen Lab test (from Dr. H.) & Western Blot and is her patient.

She found mycoplasma fermantans on first lab work; and a low CD57.

He's having a terrible time doing the ABX & maintaining his grades.

It's a tough semester for him anyway(junior/engineering).

My husband (not tested) & I have submitted our paperwork for a late October visit.

We haven't received confirmation yet.

quote:

---

Originally posted by RECIPEGIRL:
Jean,

Yes, my son attends UT Austin. He was positive both Bowen Lab test (from Dr. H.) & Western Blot and is her patient.

She found mycoplasma fermantans on first lab work; and a low CD57.

He's having a terrible time doing the ABX & maintaining his grades.

It's a tough semester for him anyway(junior/engineering).

My husband (not tested) & I have submitted our paperwork for a late October visit.

We haven't received confirmation yet.

Take care of yourself,
Jan

---

Gosh----- you know a lot of Jans!

Yep, I'm the one with the neuro brain since about 1989. Started treatment April 2003. Started with a left droopy eyelid, weak voice & fatigue; pain left ear & face;INSOMNIA.

My husband is also getting more exhausted by the month with multiple symptoms. We already knows he has Lyme & probably Babesia. We just know.

Hubby & son have had ticks on them, but not me. (don't remember one)

My son started having a droopy right eyelid this year, so it's actually disseminatd now & he's neuro too.

Keep us posted on your injections as you feel like it.
Jan

I had 21 days of IV Rocephin and the cost was a staggering $14,000.00 - thank God the insurance covered all but $300.00!

quote:

---

Originally posted by GrandmaCLD:
Hi Lisa,

I had 21 days of IV Rocephin and the cost was a staggering $14,000.00 - thank God the insurance covered all but $300.00!

I may be wrong, but I would think if they want you on Rocephin it would be easier on you to go IV. Just an opinion.

---