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Pat1001xcm
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/29/2009 4:57 PM (GMT -6)   
Hello everyone, I just joined this group and I want to share my experience with this awful disease and hopefully get some feedback and guidance from those who had been on my shoes and are still in the battle field.

 

Everything started August, 2008 when I noticed a 5-6 inches rash on my left foot after walking on grass in Morgan Hill, California. In Sept-Oct started feeling tingling on my finger during night, but didn't think anything of it...I'm on the computer all day, so I figure I had a mild case of carpal tunnel syndrome or tendonitis. The in October I went to Thailand and then to Brazil in November. Some personal issues came along that time, I broke up with my long term relationship in December, and I thought that the limb numbness, mind fogginess, depression and lack of concentration were due to these life events and changes.

 

In Jan 2009, it hit me pretty hard...I could barely work, I was depressed, anxious, couldn't sleep and I would wake up in the middle of the night with so much numbness on both arms and legs, it felt crazy.  I went to see the doctor and he right away suspected I had LD, and requested a blood test. He mentioned that he diagnosed three other patients with lyme's disease last year in this area.

 

The blood test came out positive for lyme since the Western Blot, Serum test was positive for IgG P58 Ab., IgG P41 Ab, IgM P41 ab, and IgM P23 Ab. I took Doxycycline for 15 days, and then I had to take Amoxicillin 1500 mg/day for 28 days. I felt 80% better with doxy treatment, but didn't feel significant improvement taking Amoxicillin besides the herx syndrome...the chills, etc.

 

I was sent to an Infectious Diseases doctor, who told me that he suspected I had a mild case of multiple sclerosis and sent me to a neurologist who suspected I had a pinched nerve and was suffering of stress and depression. The neurologist prescribed me a "muscle relaxer".  The bill came a month later with my portion of $512 and they didn't even request a test. The ID said that he thought the Lyme Western Blot test was giving a false positive because he thinks that I should came up positive for IgG and negative for IgM, meanwhile the test results were positive for IgM and negative IgG.

 

I returned to my family practitioner doctor (Dr. J), had an MRI and we ruled out MS, thank God. Then, he told me to see Dr. P, Lyme Diseases' specialist. I had my appointment with Dr. P last Monday (06/22/09) and he suspects I have co-infections of Babesia and Bartonella. He requested a blood panel test and an urine amino test. Apparently my immune system was weak to begin with and then the life events and the long flight (the lack of oxygen in the airplanes) suppressed my immune system making the infection active. He prescribed me Nizoral (antifungal med) which I have to go on a sugar free diet (including fruits), Mepron and Zitromax. He also recommended avoid traveling (I must travel with an oxygen tank provided by the airline), go on a gluten-casein free diet (that's going to be a challenge), sugar free diet, and exercise to increase the temperature (it kills bacteria).

 

Unfortunately Mepron is not covered by my insurance, and I don't have a couple of thousands dollars to drop right now. I returned to Dr. J last Wed, which he suggested a combination of Clindamycin and Quinine. I did a blood smear test for Babesia, but if it comes out negative he might ask for Immunofluorescent Antibody Assay (IFA) test. By reading on everyone's posts and the net, it sounds like the the combination of Clindamycin and Quinine gives gastro intestinal side effects (I'm already have GI issues without any medication) and aparently this was the old protocol used by most of doctors and the results are the same as using Mepron and Zitromax but with less side effects.

 

So, that's my story...I have a doctor appointment tomorrow (Dr. J) to see my test results for Babesia. I have been feeling pretty crappy lately with joint pain (knees and elbows), GI problems, I forget things, lack of concentration and cronic fatigue...I think I should go start taking Clindamycin and Quinine and see I can stand the side effects.

 

Please let me know your thoughts, suggestions, and words of advice....anything. Thanks!

Patty

 

Post Edited (Pat1001xcm) : 6/30/2009 12:44:28 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/29/2009 5:38 PM (GMT -6)   

Hi Patty, welcome to the board!

I am sorry you have been through so much.  Sometimes people can keep an infection at bay until their immune system is additionally stressed.  Your break- up may have caused this additional stress.

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 knowledgeable 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.  Do you know if you have been tested for all of these?  

Please edit your post (click on the pencil icon) to show just your Lyme doctor's initials.  Has this doctor been recommeded by a Lyme patient or support group?  Why did the first doctor you saw discontinue the Doxy when it was helping you?  It sounds like you were undertreated initially.

Regarding Mepron, I believe the manufacturer has a patient assistance program for people who are uninsured or whose insurance will not cover the med.  You may be able to get some information from the Bridges To Access at http://www.rxassist.org/pap-info/company_detail.cfm?CmpId=125

During treatment it is important to document your symptoms daily.  One way to do this is to list the main symptoms you have each day with 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. 

Do everything you can to strengthen your immune system--eat healthy, drink a lot of water, exercise whenever possible, do things to detox, get enough rest,  take appropriate supplements etc.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

Good luck with your treatment!  It can take time, but with proper treatment you can get better.


Pat1001xcm
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/30/2009 1:06 PM (GMT -6)   
Thank you so much for all that information Ticker. I will definitely check out the books, and write my symptoms on a daily basis. This morning I went to see Dr. J and I did the other test to check for co-infections Babesia microti, Babesia duncoti, Ehrlichiosis and Bartonella. I believe this test takes about 3 weeks. Meanwhile, I will try to do the combination of Clindamycin and Quinine. The only problem is that Clindamycin is from the same family as the Erythromycin which gives me severe abdominal pain....I will try and see if my body responds well to the treatment.

Hi Lymekiller,
As far as the mind fogginess, the symptoms come and go. Some days I feel ok, and then some days I feel brain dead. I also fell there is a correlation on feeling physically ill after eating lots of sugar. If I eat cookies at night, I wake up feeling tingling on my limbs and my body aches all day long. I try to exercise as much I can... last year I was exercising 5-6 times/ week for an hour or more. Now, I reduced to 4 times and sometimes I have to take a nap afterwards. Usually when I feel weak, I reduce the amount of cardio. I’m doing less than my last year's workouts. So, is that true that exercising increases the body temperature and it kills bacteria?

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/30/2009 3:55 PM (GMT -6)   
Patty,
I got better on alternative med. But you need to get on probiotics and immune boosters and a bunch of supplements.
It is not possible to build the body back up to health by only drugging it with huge amounts of abx.
Aviod caffeine, alchol and only drink clean water, and pump as many supplements you can handle into your system to help it fight for yourself.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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