phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
New symptoms seem to arrive everyday or getting worse.
I am having terrible muscle weakness in my arms and legs and horrible bone pain in my upper legs. Is this Lyme of could it be something else? Also a lot of body soreness in certain areas. The muscle weakness, like my muscles in arms and legs are trembling..
Still waiting on my LLMD for treatment. No meds yet just a few supplements. I also have lots of other symptoms but these seem to be worse and not leaving.
posted
Not glad that you have this, but so glad I read this..
I have the this similar new symptoms, and absolutely HATE it!!
I have had a pain in my uppper leg for 2 weeks now!! Nothing will get rid of it - motrin, advil, tylenol, heat, cold, compression - NOTHING.
So maybe it is bone pain?? How do you know??
I'm also having trembling too...
Don't know if this makes you feel any better..
I'm afraid I have something else too, since the only positive results I've ever received were from IGENEX, nothing else..But I'm trying to not let my mind wander, and trust in the doctor..It's tough!
Posts: 82 | From NJ | Registered: Mar 2011
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Could be from babesia. It causes bone pain. Someone posted in Medical about the various pains and which went with which illness.
I think it was posted by darwinsdream.
When will you start treatment, phyl??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks for your replies. Lymetoo, I am not sure when I will start treatment. The doc wanted more test she should have the results by now so waiting for a call or something.
She has tested me for Bart and Babs twice then Igenex and all negative. I had so many test that were negative and so few positive that I am questioning lyme but I know I have something ..
Bridge, so sorry you are suffering but yes it does make one feel better. Misery loves company so they say..lol.
My bone pain in my legs has been off an on for a few years but nothing like it now. Not sure what it is and I can't take pain meds except otc and they use to work but not now. Hope you some relief..
Posts: 1058 | From VA | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
See page 9 of Burrascano Guidelines. It lists "obvious muscle weakness" as a lyme symptom.
Extreme muscle weakness was my main symptom for 10 years while I had undiagnosed lyme disease.
I could not hold my mouth open to have my teeth cleaned, my legs shook like jello walking down a flight of stairs, I couldn't hold a phone to my ear for longer than 30 seconds because my arm was too weak, I couldn't stand for more than 2 minutes, etc.
I had lyme, babesiosis, and bartonella. This horrible symptom went away when I got good lyme treatment (but did NOT go away during my 2 years of lousy lyme treatment).
It has now been 6 years since I completed my treatment and I am still symptom free, enjoying my life.
The muscle weakness is actually a result of lyme attacking your nervous system. Nerves control muscles. In the beginning when I first got lyme, the muscle weakness would come and go, meaning that I would suddenly get it one day and have it for 7 months, then I would wake up one day and it would be totally gone.
That shows you that it is not really the muscles that are causing this. Only an attack on the nerves could have this "on/off" effect.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
what was the good treatment you received? After 12 years, the only kind I've received is limited oral antibiotics that always left me feeling horrible.
Posts: 20 | From Minnesota | Registered: Apr 2009
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Yeh, TF what is the good treatment? My LLMD wants to treat my inflammation and build my immune system before any antibiotics.
Posts: 1058 | From VA | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The "good treatment" is treatment according to the Burrascano Lyme Treatment Guidelines.
First, my doc had me stop all meds for 1 week. Then, he treated me for the cyst form of lyme and the spirochete form simultaneously.
He gave me 1,500 amoxi 3 times per day (with probinecid) plus flagyl 250 mg 3 times per day. (He wanted me to take zith instead of amoxi, but zith gave me hives).
During the 1 week break from antibiotics, he had me take diflucan in case I had any yeast, go on the anti-yeast diet, and eat lots of lemons and drink lots of water.
This is for detox. It will lessen the herx from the meds when they start.
I had never been treated for the spirochete and cyst form of lyme together. (I had never been treated for the cyst form of lyme period.) The week off of meds makes the lyme come out of the cyst form. Then, when it is hit with the 2 meds he gave me, it is a total ambush. The lyme cannot escape. One med kills it in the spirochete form and the other kills it if it tries to switch to the cyst form.
I had my first herx 3-4 days into this treatment.
Also, the good treatment included testing for babs, bart, and ehrlichia at the first appt. Blood sent to Igenex. Previous lyme docs had never tested me for coinfections or treated me for them.
I stayed on the 2 lyme meds for 1 month, then took flagyl an additional month and treated bart at the same time. Took Levaquin for the bart.
Then, I was done with lyme and bart treatment and moved on to babs treatment. I was also told at this time that unless I did the Burrascano exercise program (1 continuous hour of weight lifting/calesthenics every OTHER day) I would never get well. This type of exercise boosts the immune system. Needed so that you don't relapse when meds are no longer taken. Read it in Burrascano.
So, to summarize, the good lyme treatment was high dose combinations of lyme meds that included a cyst buster.
Instructed on diet and exercise. Treated for yeast and taught yeast control. Tested for coinfections through Igenex. This is all the Burrascano protocol.
I was also given supplements appropriate for my case. No previous lyme doctor prescribed any supplements.
This is the multi-pronged Burrascano approach:
high dose combos of antibiotics
testing for all coinfections through Igenex
treatment of all coinfections based on clinical diagnosis
use of supplements and herbs
anti-yeast diet and yeast killing prescriptions as necessary
order the patient to do Dr. B. exercise program
instruction on no smoking or drinking or treatment will fail
treat for 2 months past symptom free point
Prior to this doc, no doctor told me not to eat sugar or carbs. I was on a regular diet. Also, no doc told me to not drink or smoke. No doc told me to exercise. No doc treated coinfections or even mentioned them. No doc gave me supplements. 2 lyme docs and none of this was ever told to me until I got to the Burrascano doctor!
So, lousy lyme treatment is being given just one antibiotic for lyme and expecting that to get the patient well.
The thing that made me switch doctors was reading and STUDYING the Burrascano Guidelines and then going to hear Burrascano speak twice. I even got to ask him a question about my case.
After all that, it was crystal clear that my current doc would never get me well. He just wasn't knowledgeable enough about good lyme treatment. (And, I got both of these docs names from lyme support group recommendations.)
Now, I tell everyone to call the support groups and ask for a doc who follows the Burrasacano protocol. If they say, "What do you mean by that?" say:
I want a doc who will treat with high dose combos of meds like are named in Burrascano Guidelines, including treating the cyst form of lyme
I want tested and treated for all coinfections, tests through Igenex
I want supplements prescribed
I want told the proper diet
I want a doc knowledgeable about yeast and its control during lyme treatment
etc.
everything you see in the Burrascano Guidelines
Phyll6648, why not send me the name of your lyme doctor. I'll tell you what I know about him/her. I'm guessing it's a rheumatologist in Va., based on what you have said. If so, I think you need to go elsewhere.
I don't think treating inflammation and building up the immune system BEFORE prescribing antibiotics is standard lyme treatment at all !! I would love to know how your doc is "building up the immune system." My doc did it with the Burrascano exercise program and supplements. Why can't you do that and kill lyme at the same time?
I can give you some good names--docs who follow Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, my good lyme doc wanted me to eat 4 lemons per day and drink plenty of water throughout my treatment.
This was my detox. I never got up to 4 lemons, but ate at least 2 per day.
Posts: 9931 | From Maryland | Registered: Dec 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
TF, my doc is a lyme doctor not a rheumy. She is hrs away and has lyme herself. She is questioning my labs as most are negative and I can't tolerate antibiotics. Not herx reactions.. Through Igenex and two other labs I am negative for co-infections, bart, babs and she is surprised of everything being negative except for one positive igm band 18..and 2 Igg forgot which ones.
She does think lyme but thinks I have other things going on. I will pm you ..
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