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Old 03-28-2007, 03:14 AM   #1
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Unhappy chronic lymes disease

Hello! I have a friend that has been told he is diagnosed with Chronic Lymes disease. He has been to several doctors before his diagnosis, and they all thought he was crazy. It is very frustrating that so many doctors just blow it off and say its just him. So, besides that, the last dr said it was Chronic...and that there is NOTHING that they can do about it. Is this true? That just sounds so pathetic that there is NOTHING. Any advice would be helpful. He is convinced he will be dying from this, and that there is no hope. He is only 22yrs old. Thanks.

 
Old 03-28-2007, 07:39 AM   #2
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Re: chronic lymes disease

HI Welcome to the board!

Sorry to hear about your friend...think we all have the story of doctors thinking were crazy

Your friend WILL get better with proper treatment.

You could start a new thread and ask for a LYME LITERATE MEDICAL DOCTOR in his area.

Maybe he would even like to join us here

I would also suggest to him NOT to go back to the doctor that said there is nothing that can be done...waste of time and energy....

Good Luck to your friend he is lucky to have you!!


 
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Old 03-28-2007, 08:27 AM   #3
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Re: chronic lymes disease

Jojo is right. Whether or not he is "chronic", proper treatment can get him into remission and leading a normal life again. He needs to find an LLMD asap so as not to allow any more time to elapse and more damage to occur.

I understand your friend's feeling of dying. As recently as December, I felt very much like my body was draining of life and that I would not be alive much longer. I changed courses in January and added an herbal protocol to the antibiotics I was taking. Things turned around after that, and I feel much better.

Three of my children and I have "chronic" or late-stage Lyme. We are undergoing treatment and are quite functional at this time.

 
Old 03-28-2007, 01:01 PM   #4
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Re: chronic lymes disease

Hi djkmc, welcome to the board!

I am sorry your friend is sick. Many people are infected for some time before getting diagnosed. Lyme disease is treatable.

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 for your friend to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and 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. Where does your friend live?

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. 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.

Your friend is lucky to have your support.

 
Old 03-29-2007, 02:51 AM   #5
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Re: chronic lymes disease

Thank you guys so much for all of your answers...it is a relief that something can be done about it. I have told him, so now I will be on the search for a LLMD. I have told him about this website, so hopefully he will join this support group. This is a great place! I feel so bad for him...how frusterating it must be for everyone of you to have to go through numerous MDs telling you its just you and be refered to a psycologist!!! That is insane! Again, I really do appreciate your quick responses, take care!!!

 
Old 03-29-2007, 10:47 AM   #6
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Re: chronic lymes disease

Hi, Please tell him he is not crazy. Not to discourage him, but I have been dealing w/ doctors, all types, neurologists, infectious disease for 10 years now. .All of them and each one told me something different. I had given up and just lived on pain medicationand other med cocktails. Well, thanks to this Heatlthboard ,Ifound a Lyme Literate Dr. in my area. He in now treating the Lymes,not anything else. I am going to be on atibiotics for maybe a year, whatever it takes. In just one week, I cannot telly ou how much better I feel. I knew all along I just needed more Doxcy and other meds. Tell him to search online for a LYME LITERATE DR.
they are the only ones who understand!! Good Luck

 
Old 03-29-2007, 01:04 PM   #7
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Re: chronic lymes disease

Hi djkmc. If you would like a doctor recommendation, just let us know where your friend is located.

So often when doctors cannot find what is wrong, they blame the patient. It is crazy!

I hope your friend joins the site.

 
Old 03-29-2007, 01:08 PM   #8
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Re: chronic lymes disease

Hi Suze. I am so glad you are seeing a Lyme doctor!

Were you tested for all the co-infections? Which meds are you taking? How are you doing?

 
Old 03-30-2007, 12:53 PM   #9
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Re: chronic lymes disease

Hi Ticker, Well I'm waiting for the lab work from Igenex.. All of the other drs. refused to send blood there. I am on the Doxyclyine, Zithromycin and Rifampin... Still feeling good... no pins and needles, no ear ringin!! I also take a probiotic, to balance it out. I am ona strict no sugar, no white flour diet, which is fine... My Dr. is actually writing a book on Lymes since he is asufferer. I'm in Maryland and am not sure if I can mention hames. but it was the greatest relief having someone believe you. Tell me your probs..

susi,Thanks for askin

Last edited by crunchiepoochie; 03-30-2007 at 12:55 PM.

 
Old 03-30-2007, 03:26 PM   #10
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Re: chronic lymes disease

Hi Susi. I am glad you are improving! It is okay to post doctor names. Are you seeing Dr. S? It sounds like you are on a good protocol.

Make sure you wait at least two hours before or after taking the antibiotic to take the acidophilus.

Eating healthy can definitely help you feel better. Exercise is also important when you are able.

Keep improving!

 
Old 04-01-2007, 03:25 PM   #11
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Re: chronic lymes disease

Hi Ticker, Can you help me out.... I think I am going thru the herxing effects from all my new meds... havent' been out of bed for two days... real sick stomach... dizzy and reall sharp pains.. How long does this last and I know I hav to keep taking the meds but geez ifeell real real bad...got any help.
miserable susi

 
Old 04-01-2007, 03:34 PM   #12
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Re: chronic lymes disease

Hi Susi. I am sorry you are miserable! How long have you been taking the meds?

I know it is frustrating to feel bad, but remember it means the bacteria are dying! Herxes vary individually. Some people have them for a week or so, some people feel crummy for much longer. It depends on the bacteria load, if co-infections are present, etc. Over time the herxes should lessen in severity and length.

Make sure you are documenting your symptoms daily. This really helps later on to see when your herxes occur and how you are responding to the meds.

Do you take Milk Thistle? It is a supplement that helps the liver. It is good to take if your liver is healthy. Make sure you are drinking a lot of water and getting enough rest. Remember the bacteria are dying. Hang in there okay?

 
Old 04-02-2007, 12:55 PM   #13
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Re: chronic lymes disease

Hi thanks for the hint about Milk Thistle... Your'e rite about Dr. S.... I think I had herxing and the flu, cause I got real nasuaes..(still in a fog!! ) He told me to stop the Zithromycin and just stick to Docy and Rifampin... Yew..... was a rough weekend though...... I know I have to keep up /w the regimen and the strict strict diet.. I think I did do something wrong though.... I was kinda screamin in pain!!! bit it this is what it take and I know iti is......thanks so mu for your support. My family and friends really don't get. it...
suze

 
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