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Old 11-12-2007, 10:38 AM   #1
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Need some advice please!

Hi again,
I have been reading these postings & learning a lot - and of course coming up with more questions.

I have had some tests....CD57 was very low, so my current Doctor is confident I have Lymes. I also tested positive for Babesia. I also had a SPECT scan & it showed I have lesions - what does this mean? What causes the lesions & do they go away with treatment? My next Doc appointment is not for 4 weeks and I can't seem to get him to return my calls to explain these results.

I have had about a month of Doxy, 1 full month of Ceftin oral, I am now taking a combo of Ceftin & Tindamax.

Any help / perspective would be great - thanks!
Sarah

 
Old 11-12-2007, 01:34 PM   #2
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Re: Need some advice please!

Hi Sarah, welcome to the board!

How long have you been sick before getting diagnosed? What doses of Doxy, Ceftin, and Tindimax are you taking?

From what I understand, Lyme disease can cause lesions. I believe they will get better with treatment.

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 and Babesiosis, ticks can also transmit other co-infections including 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. Have you been tested for all of these?

Many Lyme doctors believe the co-infections need to be treated first. Babesiosis is similiar to malaria and is treated with an anti-malarial (often Mepron) in conjunction with an antibiotic (often Zithromax, Biaxin, or Ketek). I wonder why your doctor is not treating this first.

I know of three Lyme doctors in MD/DC: one in Towson, one in Timonium, and one in DC. The one in Towson comes highly recommended. All I know about the others is that they are supposed to be knowledgeable. If you would like one of their names, let me know.

Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

During treatment, it is a good idea to document your symptoms daily. One easy way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

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.

Good luck with your treatment!

 
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Old 11-12-2007, 02:19 PM   #3
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Re: Need some advice please!

Thanks for the information! I have had a lot of symptoms....starting years back (2002?) with aches, chills, tiredness and recently (following a new tick bite this summer) more aches, chills, fever, headaches, tiredness, loss of memory & inability to focus. Its really been affecting my work....
I am seeing a Lymes Doctor, and he prescribed a lot of tests. I have a co-infection (Babesia) also....
I started on 100Mg Doxy twice a day for 1 month, then Ceftin (500mg twice a day) for 1 month. Now I am on 500mg ceftin twice a day, and 500mg Tindamax twice a day....I started them last week and have been feeling worse ever since....bad chills, headache, stiff neck, and aside from checking out Lymes sites at work have found it hard to get any work done.
I'm pretty worried about the lesions they found on my SPECT scan - as yet I have not been able to discuss this with my doctor. Any thoughts on that? I heard that neuro Lymes can only really be treated with IV, so am a little worried that I'm wasting time on my current oral cocktail.
Thanks for answering!
Sarah

 
Old 11-12-2007, 05:29 PM   #4
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Re: Need some advice please!

Hi Sarah. I highly recommend talking with your doctor about treating the Babesiosis first. Many doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

Were you tested for the other co-infections also?

Are you having herxes?

 
Old 11-13-2007, 12:41 PM   #5
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Re: Need some advice please!

Ticker,
Yes - I believe the Tindamax is to treat the Babesia.....I tested negative for Bartonella. I think I have more tests scheduled soon with Igenix.
The herx you refer to - I think you mean a recurrence of the symptoms? Since I started the Tindamax last week my symptoms have returned en masse....and some new ones to boot. How long does a herx last usually? Hoping I get the worst of it over before Thanksgiving!
Sarah

 
Old 11-13-2007, 02:23 PM   #6
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Re: Need some advice please!

Sarah,
I didn't know that lesions are found with a SPECT scan. My lesions showed on a MRI and they did go away with treatment. What doctor are you seeing?

 
Old 11-14-2007, 07:15 AM   #7
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Re: Need some advice please!

Quote:
Originally Posted by dianneom View Post
Sarah,
I didn't know that lesions are found with a SPECT scan. My lesions showed on a MRI and they did go away with treatment. What doctor are you seeing?
Dianneom,
Currently seeing Dr B in Westchester. If you are from DE we are pretty close by - who do you see?
Sarah

 
Old 11-14-2007, 09:09 AM   #8
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Re: Need some advice please!

Dr. B did my first round of IV that got rid of the lesions in 2001. I've been on IV 3 times since with different doctors. I'm looking for a new doctor now.

 
Old 11-14-2007, 09:52 AM   #9
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Re: Need some advice please!

Quote:
Originally Posted by dianneom View Post
Dr. B did my first round of IV that got rid of the lesions in 2001. I've been on IV 3 times since with different doctors. I'm looking for a new doctor now.
Hmm. Good luck with the Dr search...let me know if you find a good one nearby....seems they are so hard to find.

 
Old 11-17-2007, 04:44 AM   #10
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Re: Need some advice please!

How long have you had your symptoms From what I understand the lesions come from the bacteria entering our brain I could be wrong but I am almost positive this is what I read the lesions are from the infection If I were you I would look into IV Rocephin if possible Alot of insurance companies are being strict about it but it did bring back alot of my thinking process and spinning of my head and having alot of confusion it helped that part It takes sometimes as long as we have been infected to have all the treatment kill off this stuff I had a biopsy from a gallbladder removal sent it off to Igenex it came back positive for plasmid Burgdorferi Lyme fragments that confirmed the lyme was still there after 1 year of IV rocephin Some studies believe that the lyme takes up it's own little apartment kind of in your gallbladder The doc believes I should get a lot better after this The rochephin most likely killed off my gallbadder function which I don't think was that great to begin with always for 20 years had trouble at times with fatty foods When the surgeon took it out he could'nt believe how inflammed it was. I was well aware of the risk of the IV Rocephin but the alternative was to have the brain fog cognitive problems severely and just not even be able to get out of bed
I went to se Bernard Raxlen in NY City He was very helpful A little on the expensive side but anything is better than living with this disease he is starting me onI IV zithromax the end of the month as well as Mepron for the co-infections which he thinks are my main problem now I have been on the Mepron for about 5 months A couple of times I missed the dose and I could really notice the difference The sweating and headache was increased because I believ of the missed dose I had slepted through the afternoon an night Most times I am up all night the doc also put me on a sleep aide since without proper rest your immune system can not regenerate itself I also take a slew of supplements but have to hold back on them due to surgery coming up at the end of the month Not feeling as well without them either I am hoping the zithromax will do the trick This is a very complex disease that effects everyone a little different
Keep at the doctors look for info and research reasearch
Good luck and always we are here for you
Ryebeach

 
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