Have been taking doxy 400mg a day for 22 days already. Haven't felt any better with arthritis in hands/wrists, sciatica/burning in legs, or head pressure/headaches when I do physical things.
My sciatica/burning is so bad in my legs I can only sit in chair for few minutes. When I stand my legs don't burn.
I guess my fatigue has gotten better though.
Since I've had it for at least year and half, maybe I should get IV? And do you think doxy is enough for coinfections too? I'm not sure if I have any. I did take Humaworm for month before testing pos for lymes since my DO in Romeo, MI thought was parasites at first.
My DO says to watch the carbs, however there is no solid proof that carbs are bad for you. My diet is already strict enough, eating no sugar foods and a high protein gluten free diet and vegetables. Gluten free diet helps with my headaches and head pressure.
What drugs have helped you tremendously?
Posts: 267 | From MI | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You are correct. Carbs are not bad for us. Not at all. We must have water, and carbohydrates - and protein and fat - to live.
As for "watch the carbs" - a clearer definition is needed. What I think he meant was start weaning off simple carbs. No refined sugar, no refined flours. You say you are already doing that.
I think simple, refined carbs (especially in the degree commonly consumed) are bad for EVERYONE and a leading cause of diabetes, etc.
For those with lyme, candida (a kind of systemic yeast) can get worse with ingestion of simple carbs.
Complex carbs, on the other hand, are one of the 3 food groups to nourish us and they help prevent diabetes as they are slowly metabolized.
Most LLMDs suggest going gluten-free. You're already ahead on that, too.
Bravo.
All vegetables are carbohydrates. We need LOTS of veggies.
Some dark berries and other low sugar fruits, too. But, if candida is bad, even those fruits may be to much sugar. But, if you can, dark berries and tart apples are so very nutritious.
You still need to get vitamin C, try Ester C supplements.
Quinoa is a grain like seed that is gluten free and very nutritious. WILD rice is really a grass and also high in nutrients and gluten free. Good fiber, too, and they help maintain blood glucose stability.
Forbidden BLACK Rice is also something you might consider, in moderation. It has an excellent nutrient mix and very high in antioxidants. -
[ 12-06-2011, 11:36 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I'm just mainly worried about doing the best treatment for this monster!
Worried oral antibiotics will not be able to fight off lymes that I've had for 1 1/2 years.
From reading stories online, I think I was naive to think any of my symptoms would go away in 22 days. But hey the CDC would say I'm fully cured from Lymes, with their so called bull**** protocol.
Going to probably have to try other antibiotics than Doxy, to help kill co-infections.
Posts: 267 | From MI | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many have achieved remission with oral therapy - but also usually with lots of nutritional support supplement, a very clean and nutritious diet and careful self-care.
IV is an option but not always necessary.
Many with lyme much longer than 1.5 years have done well without IV so time of infection is not the single most important criteria with selection of IV. Some cannot tolerate an IV. Some don't need it.
Whatever you do needs to be orchestrated by a real expert. I'm not confident that you have one from the little you've said.
When you said "22 days already" I was really hoping that you were just bookmarking a beginning.
22 days is a blip on the screen. I really did not want to have to say this but treatment for an early case is often at least 6 months - and that's for a fairly uncomplicated, responsive case.
For many, treatment is a year - or several.
"probably have to try other antibiotics . . . to help kill coinfections."
My concern with the use of "try" other abx - it sounds like you are shooting in the dark on your own.
* Do you have an ILADS-educated LLMD? *
The LYME still needs plenty of attention and will for quite some time.
LYME requires various antibiotics in combination. And flagyl to address the cyst form. Biofilm is an issue, too. Flagyl can help there but other methods may need to be employed.
This is why you need an ILADS-educated Lyme Literate doctor. Most doctors do not offer the most comprehensive treatment nor do they even know about all the stages and forms of lyme, or that one single antibiotic (abx) is not enough for most cases.
Treatment for 2 full months past the point where you feel really good again.
PROBIOTICS - for the entire time. Away from the abx.
As for coinfections, assessment for those by a LLMD is best as they are as much of a clinical diagnosis as lyme. Tests help, sometimes, but you need the eyes, ears, brain and experience of a seasoned expert.
Not all abx or even all Rx work for all of the coinfections.
And - with these Rx, comes more liver stress in addition to the toxins that lyme spirochetes spews out as it lives and as it dies.
LIVER SUPPORT is absolutely essential to help protect your liver but also to nourish your liver so that it can work better for you.
One cannot get through lyme treatment successfully unless the liver has tender loving care. Milk Thistle, NAC, Dandelion, etc.
ADRENAL SUPPORT is also absolutely necessary for many reasons as is
NEURO SUPPORT. B-12, Fish oil, top that list.
Self-care habits and recommendations for gentle exercise and strength training are outlined in Dr B's guidelines.
I thought you may have already had all this information. And you may. If not, though, I hate to be the one to break it to you but having lyme is like being thrown into a post graduate level course of study, without having even gone through the undergraduate training in the subject.
Do you need some links?
Or do you have a LLMD who has already offered you educational material and a plan of action that is comprehensive?
Are you familiar with options such as RIFE machines or the BIONIC 880 (Photon light therapy)? Both of those (independently) have helped some, as part of a comprehensive plan. -
[ 12-06-2011, 01:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Keebler..you are a wealth of info.
Muscle Car 55
Which model??
Saw and heard a Chevy Nova (I think) this am. 66 or 67
That was a treat
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Wow Keebler, thanks for the info big time! I figured a month of treatment was a joke, I just didn't know where I stood!
"Do you have an ILADS-educated LLMD?"
Supposedly, I'm being treated by the DO in Romeo, MI. Plan to see the MD in Keego Harbor, MI next month.
I am taking PROBIOTICS away from the abx.
"Which model??"
Not old school muscle, I have 02 Trans Am WS.6 and 04 Mustang Cobra. Would be nice to have a Nova or a Chevelle one day, but it's the last thing on my mind since hope and thinking about my hobbies depresses me, just thinking about task at hand. Cool you asked though!
My life has been demolished by lymes this past year, sorry to say, if I don't get better going to have to sell one of them.
Posts: 267 | From MI | Registered: Oct 2011
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quote:Originally posted by Muscle Car55: I am taking PROBIOTICS away from the abx.
My life has been demolished by lymes this past year, sorry to say, if I don't get better going to have to sell one of them.
MC55. I'm taking probiotics mid day inbetween abx, is that what you are doing?
And I agree, life sure has had more steep hills this year..
Keebler Honored Contributor you earned that name today.. I started those vitamins you talked about in your last post today.
Now as far as the probiotics thing goes, did you mean that once we reach remission with oral therapy abx we should continue on with nutritional support and probiotics?
MC55 didn't mean to hi-jack your thread.. I have a lot more questions I'll have to try and ask you guys later if thats ok? Right now I'm going to try to make it to work today..
All of you thanks for the helpful info.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
I was just told by a member I should be taking multiple abx, not just doxy. For cysts and coinfections.
I don't want to be doing a mild treatment and be stuck with this disease. That's what I'm worried about.
I think I'm going to use the DOs(Romeo MI) treatment for now until I can see the MD in Keego Harbor, which is in a month.
Posts: 267 | From MI | Registered: Oct 2011
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quote:Originally posted by Muscle Car55: I was just told by a member I should be taking multiple abx, not just doxy. For cysts and coinfections.
I don't want to be doing a mild treatment and be stuck with this disease. That's what I'm worried about.
I think I'm going to use the DOs(Romeo MI) treatment for now until I can see the MD in Keego Harbor, which is in a month.
Call that MD in keego and ask if they have any canceled appt's you'll take them. Maybe that will move your appt date up..
Although we are two different cases, I was also wondering if I should be taking multiple abx. After going to those quacks that gave me steroids and waiting 4-5 months for treatment. (I'm only on ceftin twice a day right now). My biggest fear is the same as yours MC55, will I be like this forever..
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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After doing my research it's obvious that I should be taking more than one abx at a time to break up cysts and coinfections.
My Lyme DO in Romeo said oral abx would be enough for my case because my IgeneX test said my infection was recent. I don't believe any test is accurate enough to say your inefection is recent especially know you've had symptoms past a year and half. I need to correct him on that and explain to him I've already been dealing with this for year and half. That might be reason why he's treating me with just doxy, however he did say he will be rotating abx.
From interview on Coast to Coast they said GSE is good for breaking up cysts, of course going to have to take GSE 3 hours before or after abx.
That's my input, hang in there Cracker Jack!
Posts: 267 | From MI | Registered: Oct 2011
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