posted
I'm sorry but I'm feeling at a lost. I have been on heavy antibiotics for 7 years now and the only thing happening is joint problems. I have very little balance and have to use a walker. I have pain most of the time and have had alot of weakness, might be some of my balance problems. I guess I'm feeling sorry for myself but I'm tired of living like this. I'm thinking about getting off all the meds, I don't see where they are doing any good at all. Yes, I do see a good Lyme doctor. I had Lyme for about 5 years before I got diagnosed. Does anybody get any better??
Posts: 58 | From Andover,Ohio,USA | Registered: Nov 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Daisy Lynn,
Sorry to hear about how you are feeling and it's understandable that you would be discouraged.
Yes, people do get better.
Glad you see a good lyme doctor ( you knew that would be question #1).
Now to other questions:
Are you also taking supplements such as vitamins, liver protection and adrenal support?
Does your magnesium supplement or your fish oil seem to help decrease your pain by much ?
Have you been assessed for coinfections from ticks but also for Cpn (Chlamydia Pneumonia) and HHV-6 ?
I assume you avoid all artificial sweeteners and generally have good self-care and diet. But sometimes, those artificial ingredients can sneak in so be sure to check labels.
And mold exposure is often over looked. If you have a bed that you adjust by dialing a number, some of those have been found to have mold inside. If so, do NOT open it up, but PM me the brand and I will look through my file about that.
===============
Links here may bring you your answer:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
The One Earth Herbal Sourcebook (Tilltotson, et.al.)
While the only reference to lyme is in the chapter about Sarsaparilla, this is an excellent resource book about the forms and functions of herbs. Liver and adrenal support herbs are described in detail here, too.
If you have a LL ND near you, that would be best so that you can have individualized care. Acupuncture is also very helpful as a support - it can help the herbs work better.
=================
While intended as support and not primary therapy, some of the supplements here are essential for lyme patients.
posted
Hi, So sorry you are going through this. 7 years seems really extreme to me but just my opinion. At this point I would consider seeing a different llmd or doing rife+supplements. I hope this gets better for you and try to hang in there.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
how are your metals? Dr B says if a lyme patient is not responding to abx, then the heavy metals may need to be addressed/chelated before moving onto other treatments......
good luck.
did they originally have you dx with MS or lupus? just curious.
Hope you get the answers your body needs. good luck.
~Greenery~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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posted
I'm so sorry you're not doing well. Yes, many of us do get better. REad some of the success stories in General Support.
Have you been treated for babesia and bartonella yet? Many have it even when they have negative tests. A good LLMD will consider a trial run of those meds regardless of the test results.
ARe you seeing a dr in OH or elsewhere?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sorry you are feeling so bad. Have you been treated with antiparasitics?
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm in my 7th year of treatment too. I just found out I had heavy metals, Babesia, Rocky Mountain Spotted Fever, Babesia, Hypercortisol levels, unusual thyroid and testosterone function, as well as rock bottom Vitamin D levels and toxic mold exposure.
Most of this showed up directly via testing thru Quest labs. So, if you've addressed a lot of this stuff then you may wish to start investing in alternative therapies like Rife, etc, but if you haven't tested for "all" co-infections and investigated them clinically as well, then it would be a wise move.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
daisylynn, I won't bother to repeat what Metallic blue repeated but if it has been this long and you have made little progress, you should look into the things mentioned in the above post.
I have done all of the above, including HBO treatments, rife and many other alternative treatments that have helped me progress when I
was at a stand still with ABX treatment. For difficult cases, there is often much more going on, as out lined about.
I hope you see some improvement soon, but don't give up. Please consider a different approach.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Whatever you do, don't stay with your LLMD if the only reasons you're staying is because he/she takes insurance. I stuck with mine for years because the costs were excessive. It's better to go into deep dark debt than remain under the care of incompetence. (I'm not saying you're physician is incompetent), but rather I'm speaking generally to everyone.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I am so very sorry to hear of your suffering...
For what it's worth, I treated off-and-on with abx for years (almost 4), IV and orals, also did HBOT.... I also treated with antivirals....I finally got to the point where I felt like my problem was not infection related and all of the drugs might potentially be causing some harm....(depletions of minerals....etc)...
I have been in horrific pain, all-over muscle pain, and joint pain...popping/cracking/feet hurting so bad...no stamina....(recently learned my teeth are chipping)...(I'm only 38)...
Anyway, I have recently learned that my body is severely deprived of magnesium and vitamin D...I replaced the mag and now I'm working on Vitamin D.....I cannot express enough how vital it is to your health that your vitamin D levels be in the appropriate range....If not, you can be in SEVERE PAIN.....and have severe muscle weakness ....
A really great test for Vit D deficiency and bone pain that is often used is for the person to push with the thumb on his sternum...If he feels pain, it's a strong indicator of Vit D deficiency...Also, tailbone pain....lower back pain.....
The following is an excerpt from an article at the Mayo Clinc. Proc by Dr. Holick, a reknowned expert in Vitamin D deficiency:
Osteomalacia and Vitamin D Posted by admin on November 27, 2008 under Osteomalacia, Vitamin D | Be the First to Comment
Vitamin D deficiency causes a defect in the ability of the body to deposit calcium into the collagen jello-like matrix in the bone. As a result, the covering on the bone which contains pain sensing nerves is easily deformed resulting in throbbing aching bone pain. Patients with osteomalacia often complain of achiness in their muscles and bones.
These non-specific aches and pains in the bones and muscles are often misdiagnoses as fibromyalgia or chronic fatigue syndrome. There have been several studies demonstrating that patients with severe bone and muscle pain and muscle weakness associated with osteomalacia have dramatic improvement in their symptoms when vitamin D deficiency is corrected. It takes months to years to develop osteomalacia and associated symptoms and it takes three to six months before significant improvement in symptoms results from correcting vitamin D deficiency.
References:
Holick, M.F. Vitamin D deficiency: What a Pain it is. Mayo Clin. Proc. 2003; 78(12): 1457-1459.
Posts: 1155 | From Southeast | Registered: Oct 2005
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