posted
My husband was diagnosed over a year ago with Lyme disease, after a significant tick bite & positive test results. He was given 2 rounds of antibiotics, & we thought that was the end of it. A few months ago, he got another tick bite & his doctor told him that he was re-infected (after more blood work). He went on another round of antibiotics, & was subsequently diagnosed with fibromyalgia. His current symptoms include extreme fatigue, muscle/joint pain, as well as neurological symtoms that seem to 'flare' up like word finding difficulty, slurred speech, & other signs of impaired cognition. We're going back to his PCP tomorrow for a more in depth conversation about all of this. I just feel at such a loss. I feel like he is not himself more often than not anymore, & I just feel that fibromyalgia is being used as a catch all. The longevity and increased intensity of these symptoms leaves us with limited hope for what the future holds.
Ideally, I imagine we will need to find a specialist in the CT (preferably Htfd county) area. I just wish there was a way to know exactly what's going on with him so that we could more effectively combat it. Any personal experiences with neurological components to this disease would be greatly appreciated. Am just not sure what exactly we're dealing with. Thanks in advance!
Posts: 5 | From Hartford County, CT | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- None of the three times did your husband receive proper treatment. But it's the treatment that the IDSA recommends and all that most doctors know about.
I also wonder if other tick-borne infections were assessed. Lyme rarely travels alone.
Your husband needs to find a LLMD - lyme literate MD who is ILADS-educated or an ILADS-member.
ILADS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.
LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.
ILADS = International Lyme and Associated Diseases Society. The best group for true and accurate detail.
IDSA - Infectious Disease Society of America. IMO, they far exceeding short and undermine the ability of lyme patients to be diagnosed and treated appropriately in order to evade chronic illness or worse.
Most ID doctors (infectious disease doctors) are members of the IDSA and follow that protocol solely. The IDSA denies the existence of chronic lyme and they do not treat all forms of lyme, ignoring the cyst form which can turn lyme chronic.
TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.
STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.
Lyme is just one of many chronic stealth infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
============================
TESTING
He should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can FIRST evaluate him in person and then guide him in testing. One of the top labs is:
[Your husband is already diagnosed with lyme, but I'll leave this in so you have a good set of links for your file - to share with others. This is relevant to your husband, though, regarding CHRONIC infection.]
VERY important to read - even BEFORE testing:
Dr C's Western Blot explanation is discussed here:
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:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
LymeMD Blog: 3/4 of the way down: Wednesday, March 3, 2010
BABESIA, Babesiosis, blood parasites, malaria like organisms, piroplasms-protozoa: all refer to the same Lyme associated co-infection -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm trying to give you all you may need before tomorrow's appt. Here are just few more notes:
Avoid vaccines. These can make lyme patients MUCH worse.
Avoid Steroids. Steroids make lyme worse.
Also avoid lumbar puncture (spinal tap).
Avoid: MSG & aspartame - Google for all the names they hide under and check all your labels, even cough drops, toothpastes and medicines.
Avoid alcohol and all processed foods. They are hard on the liver and the nerve fibers.
STEVIA (from a plant) is okay to use to sweeten Green Tea, etc. Truvia has additives, though. SweetLeaf or Trader Joe's are two pure brands of stevia.
PROBIOTICS are necessary - even as you wait. If abx (antibiotics) are prescribed, take probiotics away from Rx and away from supplements.
MILK THISTLE is also good to start now. It's a supplement that can help the liver cope with the excess toxins from lyme. Lyme is a very toxic infection. Take away from both Rx and from probiotics.
B-Vitamins help the nerve fibers. Not too late in the day if B3 (niacin) is it it as that is stimulating.
Good luck. Take care, now - both of you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I cannot thank you enough for the info! This will much better equip us as we continue towards determining what is going on with him. Many thanks!
Posts: 5 | From Hartford County, CT | Registered: Oct 2010
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My son was diagnosed 12/09. Has progressively gotten worse each month. Only signs of neurological symptoms...never has said anything hurts...he's so bad now he hardly speaks and when he does, just says "its good" no matter the question. He can't be left alone anymore...currently switched docs and is on 400 mg. IV doxy per day. Is also laughing uncontrollably at times, comes and goes...current doc thinks it could be a herx. We do Dr. B. vitamins as in book and does exactly what the doc says but still waiting for my son to get better. Everyone is right, get a great doctor.
Posts: 158 | From NJ | Registered: Jul 2010
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