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Old 10-19-2007, 04:14 AM   #1
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Persistant Herksheimer on Rocephin through PICC line

My wife is being treated for Lyme (15 years with the disease) with IV Rocephin for the first time. The Herksheimer (if that is what she is having) is very rough on her. Anyone with any insight to the pattern and duration of the Herksheimer reaction in cases like hers would be greatly appreciated. She would write herself if she was well enough. Thanks.

 
Old 10-19-2007, 12:45 PM   #2
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Re: Persistant Herksheimer on Rocephin through PICC line

Hi gmacp, welcome to the board!

I am sorry you wife is having a hard time. How long was she sick before getting diagnosed? What dose of Rocephin is she infusing and how long is it prescribed for? Is see seeing a Lyme knowledgeable doctor?

What kind of sympotms is she having? Although herxes are usually an intensification of symptoms or new ones, many people experience them at the beginning or change of treatment and every three to four weeks. Some people feel crummy during treatment and worse during the herx period, and some people feel better until they herx. This disease affects people differently.

It is a good idea to document your wife's symptoms daily. One easy way to do this is to list the three main symptoms she has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when her herxes occur and how she is responding to the meds.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Has she been tested for these?

If you need a doctor recommendation, let us know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? It can take time, but with proper treatment your wife can get better. She is very lucky to have your support.

 
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Old 10-19-2007, 08:41 PM   #3
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Re: Persistant Herksheimer on Rocephin through PICC line

Thanks for responding. My wife has been ill to various extents for 15 years with an initial period very similar to what she is going through now. She was a long time patient of Dr. Burrescano until he left private practice; now with Dr. Leigner in Armonk and a good GP in Manhattan. She was given IV rocephin initially (15 years back ) but had an apparent allergic reaction. This time she was desensitized in hospital and then had a PICC inserted so she could do the infusions at home. Current infusion 2 grams Rocephin daily. She has several long term Lyme symtoms including nausea and tingling in arns and legs, fatigue, some cognative issues. The treatment is basically making symptoms much more severe and making sleep hard to get. PICC line may be in too far and giving palpitations when lying on the side the PICC is in.

Dr. Leigner and the GP are not sure that she is having herx reaction; perhaps it is just the meds that are kicking her around. Leigner has suggested she might need to reduce the dose but the GP is not so sure. I think if she had some sense of how long she was going to feel so bad she might be more encouraged, but no-one can say of course. Her first 2 days on the Rocephin were very rough and then the next 2 days were better and we were encouraged to think she might be making progress, but then she went downhill again and has been mostly down for the last 6 days.

Any information on people's reactions to Rocephin or Herksheimer Reactions would be appreciated, however anecdotal.

Thanks.

 
Old 10-19-2007, 09:33 PM   #4
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Re: Persistant Herksheimer on Rocephin through PICC line

Hi. I've suffered with the disease for 24 years and am currently on the same med and dose as your wife.
I've been herxing very hard since the beginning and the severity of existing symptoms have increased. I typically infuse at 10am just after a meal....when I have the second meal I really feel toxic and by the third meal of the day I am shaking and feel like I'm ready to have a panic attack.
At that point, I get into the bath and pour two 32 oz bottles of hydrogen peroxide and a box of baking soda. This seems to neutralize and I'm able to sleep with the help of xanax.
My best to your wife,

Rodney

 
Old 10-20-2007, 05:41 AM   #5
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LymieGirl HB User
Re: Persistant Herksheimer on Rocephin through PICC line

Quote:
Originally Posted by gmacp View Post
My wife is being treated for Lyme (15 years with the disease) with IV Rocephin for the first time. The Herksheimer (if that is what she is having) is very rough on her. Anyone with any insight to the pattern and duration of the Herksheimer reaction in cases like hers would be greatly appreciated. She would write herself if she was well enough. Thanks.

She might try coffee enemas. I've never tried one, but they're supposed to help a lot with detoxing and Herx symtpoms.

I think she lays on her side while using the enema. I don't know how long she would lay on her side...maybe 15 minutes.

Last edited by moderator2; 10-20-2007 at 06:52 AM. Reason: do not post commercial websites or copy from them

 
Old 10-20-2007, 05:59 AM   #6
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Re: Persistant Herksheimer on Rocephin through PICC line

Hi gmacp. I am sorry your wife has been sick for so long. How long has she been on the Rocephin now? It can take time to recover and it is normal to feel worse before feeling better.

Has she been tested for all the co-infections recently? Many Lyme doctors believe they need to be treated first for Lyme treatment to be effective. This was true in my case.

Her doctor comes very highly recommended. I would not recommend doing the enema or any similiar procedure without talking to her doctor first. Sometimes these things can make things worse.

 
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