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Becky
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Posted: Mon Feb 15th, 2010 09:29 pm |
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Ila,
Well, I"ve been gone a long while and here I am back again. And I was re-reading your response about Babesia.
The last Dr that I saw, who was not only not LL, but closed minded about it, did some kind of little test on my finger which showed my blood was not well oxygenated. I do not understand the controversy over treating Babs when it has shown up on a lab test. He wanted to look at everything else, other than the help I was seeking.
Anyway, sometime, late summer to early fall last year, I completed 2 months of 3500 mg Amox per day, and after horrendous side effects and/or herx (who knows?), which I documented on here somewhere, I came to feel much better. I even wanted to believe that I was cured. I know Lyme is hard to get rid of, but I had strong faith in a couple months of such heavy duty abx.
I did not feel great, but at the root, the buzzing/throbbing/inflamed feelings at the bottom of it all were gone. My neck was damaged years ago, but the worst of that was gone as well. The really bad depression would rear its ugly head now and then, but I'd been fighting w/ it. Almost felt bipolar, tho the 'highs' weren't near high enough.
It (lyme?) is creeping back up on me again, I can tell. I tried to ignore the 'buzzing' feelings, but next came the throbbing. The past few days, my entire mouth is very sore and is throbbing, my neck is in quite a bit of pain, all my muscles ache and everything is throbbing. Last year, I knew that my mouth was taking the brunt of it because it was so sore and throbbing all the time. And I suspected lyme had been the root cause of my dental problems.
I'm not going to be able to go thru all this again. I already wasted too much time and money getting nowhere, except for the Dr who gave me the Amox (who I cannot return to because he's out of the lyme field now, plus I cannot afford him)
I had Dr bills not covered by ins, a major dental emergency and a vet emergency that has drained everything I have (cash and credit)
Could you please post the link (or address) again for those seeking Lyme Drs in their area?
I am so sick of all this. It makes no sense that this disease should be so difficult to diagnose and treat. I strongly believe that if Drs were permitted to treat their own patients the way they believed was most beneficial, we'd all have learned a lot more about all this by now. All this secrecy and controversy is killing us.
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Ila
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Posted: Sun Nov 8th, 2009 01:37 am |
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Many of the doctors start treating one disease at a time. If you begin taking several treatments and have a problem it is difficult to then figure out which has caused the problem. Many doctors have to practice caution because of the controversy of treating tick born diseases. Without positive documentation of test results many doctors won't treat.
2 summers ago 2 girls died in Columbia Mo because the hospital doctors waited for the test results to confirm Eriliciousis and by that time the result came back it was too late to save the young girls.
The Babesia is costly and with most health plans you have to send through the appeal process. Babesia is in the same family as Malaria and is treated with anti Malaria drugs. This parasite lives in the red blood cells and I believe that is why we have the increased respiratory problems. Many are using oxygen and are sleeping better and feel more rested.
I thought the Babesia was scaled 1:256 at least on the WA 1 test ( this strain was first identified in Washington State). My daughters test was in the normal range mine was over 1,000. Quest sends the test to a lab called Focus labs in CA both labs are part of the Quest system.
However we have a MO strain of Babesia that the researchers have found in the lab environment, but we don't have a general test yet. My daughter had the symptoms but no positive test, she made improvements with treatment for her Babesia. There are many new tick born diseases that they have found but can't test for yet.
Babesia is a very serious condition. Because it occupies the red blood cells that carry oxygen to the organs and it would appear to suggest that oxygen is being hampered by the presence of this organism.
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Becky
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Posted: Sat Nov 7th, 2009 10:55 pm |
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Ila, my IgG for babesia was 1:32. The lab interpretation says levels equal to, or greater than 1:1024 can be detected in 'acute phase' patients w/ parasites in blood smears. Yet the lab notes state indicative of a past infection. This was a Quest test, but I don't know the name of it -- do you know if it is the test you referred to?
I have every single symptom you listed below. My ex- LLMD ordered another test for babesia, which I could not afford to get. Why do you suppose he did not prescribe treatment?
Back then, I called his number, asking this, and requesting a script be called in for it, but he never returned my call.
What can I do? Is there any way that my body can defeat this, alone?
Last edited on Sat Nov 7th, 2009 11:21 pm by Becky
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jpat
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Posted: Sat Nov 7th, 2009 07:53 pm |
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| my com wont let me IM you do you have an email address?
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Ila
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Posted: Sat Nov 7th, 2009 05:12 pm |
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| most us lyme doctors are giving patients 600mg of doxy a day. in Europe the dose is 400mg a day The doctors in KC are filling up and some 3 don't have waiting lists any more. a couple will do doctor to doctor consultations. The guidelines most of the doctors follow are from a New York specialist who is now doing research at Columbia University in NY. look for the Dr joe Burrosacono on the net. these will help with supplement information . I would have the WA1 babesia test run as a precaution. Symptoms include respiratory problems, heart and lung pain, digestion problems, IBS symptoms,cognitive problems, sensitivity to light and or sound,sweats and or chills, vision changes, rapid weight gain or loss, asthma or feeling like you have shortness of breath. You may not have any of these symptoms or may only have 2 or 3 but with out treatment many patients develop most of these problems. if you send me your address in a private message I will make sure you receive a packet.
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jpat
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Posted: Sat Nov 7th, 2009 04:13 am |
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I know the test i had done was western blot not elisa. i didnt know which one. is there one i should have done over the other?
the doctor i went to didnt suggest any of the things you have, do you know of any that you would recomend that i could get into see?
im currently drinking probitiotics, taking vitamin c supplements. anything else you could recomend?
as for treatment you would suggest being tested for those other diseases and upping the dosage on my doxy?
i apprecitate your help and taking the time to respond to my questions.
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Ila
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Posted: Sat Nov 7th, 2009 01:30 am |
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If Lyme is treated within the first few weeks after the bite your chances are good for a full recovery. However I'm not sure what stage 2 of Lyme is.; generally you have early lyme or chronic lyme. Lyme borillia is an aggressive bacteria that can effect multiple systems of the body. Co Infections such as Babesia, Rocky mountain spotted fever, bartenella and many others will make your treatment of Lyme much harder and those with multiple tick born infections are most likely to have chronic Lyme Disease. The dosage you mentioned is low for Lyme treatment and you may feel worse as the bacteria dies off. Most people are more tired or feel worse with initial treatments.
Most people think the is an easily treated illness and until you experience it first had or watch loved ones go through the illness, you find out how life changing this can be. The most important part is to continue on treatment like they treat staff infections for months after the symptoms are gone. All symptoms. You may need to combine antibiotics but the key is not to stop and start treatment. You amy hear about the 4 week guidelines that most doctors are using, The Attorney General in CT Richard Blumenthal investigated those guidelines and found conflicts of interests and violations on procedures. The AG even cited some insurance companies in his findings. This came out in 2008 I believe May. You can read it on line.
Quest labs has a good Babesia WA 1 test which is avery common co - infection in our area. Babesia is in the same family as Malaria and has similar symptoms. If horses have Babesia it is a reportable disease for the CDC and State health departments, but neither the State of KS or MO are tracking Babesia in humans. I hope this helps some. Most doctors in our are are given the impression Lyme is rare in the midwest. All ticks can carry the borillia bacteria. We have an overabundance of deer, which is the host that the ticks prefer. One tick that feeds on a deer will lay thousands of eggs instead of a few hundred if the tick feeds on a rabbit or mouse. Each deer has many thousands of ticks that will feed at one time. If the female tick is infected then all eggs laid will carry the bacteria.
As to when you will have your life back, No one is the same. So are on IV's for years and seem to have stopped but then have a jump after many months of thinking the treatment must not be working. If you end treatment too soon then your chance of relapse is very real and most people are worse than they were the first time. Most of Lyme patients are on suppliments i.e. probiotics, vitamins to boost our immune systems and many of us have deficiencies.
What test did they use to confirm you stage 2 diagnosis?
Did you have a positive IGg Western Blot? and a positive Igm western blot?Last edited on Sat Nov 7th, 2009 01:48 am by Ila
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jpat
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Posted: Sat Nov 7th, 2009 12:37 am |
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If I could give a little bit of my background and get any suggestions I would greatly appreciate feedback.
I noticed a bump on me roughly six weeks ago. The bite didnt go away and I first started having serious symptoms around three weeks ago. I was tested for lymes and was diagnosed with stage 2 lyme disease.
I have now been on 100mg twice a day of dextrocycline for two weeks now. I am noticing some minor improvements but nothing significant. Some days I feel as bad as ever other days I feel great.
My symptoms today were so bad I am beginning to wonder if the antibiotics are working at all. My father is a dr and has contacted many gps who have all acted like it is no big deal and a few weeks of treatment will make me fine. Im starting to have my doubts.
FYI I'm fairly positive that I acquired this from Shawnee Mission Park. My girlfriend and I started taking her dog there this summer.
Questions
How long before I can expect relief from my symptoms?
Do you have any suggestions for drs to try?
Is my immune system weak, am I a high risk for serious complications from H1N1?
Is taking only 200mg of detracycline a day risking my chances at a complete recovery?
Are there any other additional treatments or things I can do to make myself feel better?
I'm quite scared that my condition isn't going to improve. Before this I enjoyed my life very much. Now my symptoms are so random and debilitating I have had problems with my girlfriend, missed work, and can do very few things socially. Needless to say my quality of life has plummeted.
BTW I'm sorry if I sound like a baby for complaining about my condition as I know many you you have significantly more problems from your lymes.
thanks, jesse
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