posted
Today I found this site. I have been very sick with a form of Lyme that has not loosened its grip since May 5th 2005.
Sept 2004 I was bitten by a tick. Actually found the paracite on my thigh. I pulled it out. Left no ring. Never thought twice. Woke up one day in May and my life has never been the same since. Antibiotics, like Levaquin helped for a short time. Then came the numerous blood tests, disease specialists, arthitis specialists, and a world known Lyme specialist.. Alan Steere. Who told me Amatriptolyne would be the help.
I have a titre that is negative for lyme, but at some point my body fought with Babeosis?
What ever the case is, the negative babeosis titre keeps changing and my immune system is not well. My mind is in a complete fogg, almost praying daily to wake up from this nitemare.
I work 55 hours a week, and it is pure will power that gets me thru it daily.
I have had a team of doctors review my medical file and came back with a suggestion of a spinal tap. Not gonna happen, when I know this is all related to the tick bite and the version of lyme i was exposed to. Negative results, negative titre's or not, I am dealing with a horrid disease that no one understands and quite frankly, it can test a man's will daily.
I am thinking of bringing my file to a doctor on the Cape, Dr. D. Anyone heard of him?
I am trying to keep this post short and in a nutshell. So many doctors, 50 + viles of blood, so many negative people who have not a clue what it wrong with my body. They just want to dope me up with a depressant and I refuse to take such a medicine, unless medically proven I have a specific condition to which they can not find!
Anyhow.. I look to you people here for guidence. I am losing my strength some days, my wife supports me and thank God for that.
Where do I turn from here? How can I beat this?
Thank you all who take the time to reply to me.
I wish all of you who are suffering and those that help those who are suffering, a heartfelt hug and prayer that there is a way to beat this disease. Its extremely difficult. Peter
** Moderator's note - edited to remove doctor's name **
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so sorry you have this. i can only make the simplest of recommendations.
1. get a good llmd (lyme literate medical doctor). 2. start on vitamins and supplements 3. read dr. burrascano's protocol 4. investigate everything. there are a lot of protocols and what works for some will not work for others.
i've been on long term antibiotics but, unfortunately, they did me more harm than good. however, in the beginning they did work and got me to a point where i am now on the cowden protocol.
the are alternate treatments -- rife, salt/c, cowden, marshall, and buhner.
get your igenex test first.
i'm sure others will chirp in with a lot more suggestions.
55 hours a week is a lot. do not stress yourself out too much, it's bad for lyme. you need plenty of rest.
i will pray for you and hope you do well with any treatment you decide to take.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
WElcome!! I'm sorry you were mistreated by Alan Steere. He is the closest thing to evil I can think of. Now YOU have to suffer because of his ineptness.
We aren't supposed to post LLMD"s names.. like Dr D you mentioned above. If you can figure out how to edit out his name, we would appreciate that. ( Steere is fair game! )
BTW, DR D does not treat babesia, so I would suggest that you go to Seeking a Doctor and ask for help in finding a good LLMD.
Someone will be happy to help you!!
PS.. click on the pencil and pad icon and then remove his name. Then click "edit post."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I'm very sorry to hear your story, but it is VERY familiar! The previous posters have given you great advice. Definitely find a LLMD to properly diagnose you.
Babeosis, caused by the babesia protozoa, will rarely go away by itself. Lyme works with it, synergistically, to suppress your immune system and propagate both infections. Babesia will make you feel fatigued all the time. It attacks red blood cells so you are always in an anemia-like state.
One of the best things you can do is educate yourself. Please read Cure Unknown: Inside the Lyme Epidemic, by Pam Weintraub. It will explain the diseases, treatments, and the history of lyme, how you can go to all those Drs and never get a real diagnosis. Also see the documentary Under Our Skin. It's available at Netflix.
Please check back and let us know how you're doing.
Good luck!
James
Posts: 872 | From New York City | Registered: Jun 2008
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bettyg
Unregistered
posted
welcome peter
check your profile above for my pm to you of mass. llmds.
my welcome letter is in my signature link below...hugs
try to reduce the no. of hours you work weekly; way to much stress and COPYING with co-infections do not mix. hugs
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Welcome Peter. You found a great group of people
here to help. If I were you I would get copies of
all test results and pics of any rashes you have to
have ready for LLMD you choose. Many LLMD's have a
wait list right now. Don't let that deter you.
While you are waiting to get in you can find
things others are doing to try to help. Good Luck
and prayers for a easy road.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OH MY GOSH, MtBlue...
You said you went to " a world known Lyme specialist.. Alan Steere."
I think my head is going to explode!
Boy did you get ducked on that one! That's the grandfather of the "no such thing as chronic Lyme" hooey!
Now I am laughing hysterically!
And I am not laughing AT you! Not at all.
I just can't even imagine how that went! You didn't pass go, didn't collect $200.00.... just went right smack dab into the devil's den! Poor dear!!!
May I guess who told you this jem .. "I have a titre that is negative for lyme, but at some point my body fought with Babeosis?"
If you weren't treated for Babesiosis, you NEED to be.
And a negative titer for Lyme is VERY common!!! In fact, the sicker you are, the more likely your titer will be negative and/or low positive... or what the ducks like to call "borderline".
Having a borderline Lyme test is like having a "borderline" pregnancy test.
I know the folks here will help you the best they can. They are by far the best of the best.
We have all been ducked by the Bumsteere and his butt kissers .. which is why we are here trying to help others so they won't have that happen too.
Hope most of all that you are feeling better soon. I really do.
posted
Hello...I am new, as well. Your post is my first read. I am sorry to hear of your suffering. I hope that this site and it's members work for you. I feel your pain. God bless!!
Posts: 72 | From Virginia | Registered: Nov 2009
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posted
Hi you need to see a really good LLMD. There arent many. Im also from eastern Mass. Maybe we should talk. I was really sick and am 70% better after a year of treatment.
Posts: 16 | From Watertown, MA | Registered: Oct 2008
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