posted
I'd appreciate any opinions about this case. The man preferred to e-mail so I've sent a lot of information, questions and several opinions. Last week, I suggested again that we talk, so he agreed and asked me to call in the morning.
In 2000, this man (avid hunter) had a horrible case of flu followed by fatigue and joint pain. GP tried to treat but gave up when he kept getting worse. He sent him to Arthritis Dr.
All tests were negative, but RA prescribed antibiotics for 3 1/2 months. He said he did not take any probiotics. He doesn't remember what abx or dose the two drs prescribed and has no information about the tests.
Now different symptoms have developed and same dr. says it's not Lyme or RA. He's had 5 ear infections since Nov, ringing in ears, sore muscles (calves, shoulders, fingers, lower back), no energy, tingling in left arm.
Thursday, he has appointment with neurologist who is going to do a muscle biopsy.
He said "the RA has treated lots of Lyme patients," but for me that doesn't mean anything. In my opinion, he probably did not receive adequate treatment in 2000 and it has flared up with different symptoms. Also, he could have co-infection(s).
My questions: 1. I know sinus infections are common with TBDs. Are ear infections common, too? Seems logical to me. 2. I'm aware of a number of cases of Lyme and Bartonella and some Babesia in SC, but his symptoms are not the typical pattern. Any suggestions about which TBDs are most likely involved? I was thinking Bartonella. 3. Have you heard of a muscle biopsy showing TBDs? 4. Is it possible the tingling in his left arm could in any way be related to the heart?
Any suggestions or opinions would be so helpful. Thanks!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Let's say the body gets weakened by having to fight Lyme. Then it's more susceptible to other bacteria or viruses as well. Could be what's going on with more ear infections.
I'd say his symptoms sound like Lyme.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ears, I had 20 years of solid ear infections. Turned out lyme was the root . . . but also dairy and gluten can aggravate.
he says "Thursday, he has appointment with neurologist who is going to do a muscle biopsy.":
Well, it's not quite "legal" to offer medical advice per se but - were this to be myself in such situation - I would not do any muscle biopsy. Painful, invasive, expensive and the doctors have not yet come close to doing a proper job of investigation.
No, they will not test the muscle biopsy for lyme.
A muscle biopsy is just out of bounds at this point in time. I hope he can find a LLMD for a good assessment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Robin, thank you for such a quick response. It makes me feel better to know someone else has a similar opinion.
After almost 25 years dealing with TBDs, I tend to see Lyme more often than most people around here(in SC). The exception is other people with Lyme disease seem to see it, too. Through the years, the Lyme Disease Network of South Carolina has had hundreds of people needing help. It's so frustrating and discouraging.
I'm hoping this man will be able to go to North Carolina to see a LLMD there. He needs to be evaluated.
Thanks again!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Keebler, Thanks for sharing about your ear infections. I thought it was logical that they could be Lyme related.
I totally agree about the muscle biopsy. I don't think he'll learn anything to help him, especially when considering your description of the procedure. I think he's feeling so desperate he's willing to do almost anything.
I can't give medical advice, but I do plan to make suggestions for him to consider. I'm hoping he'll move that test to the very bottom of his list.
Thanks again for responding so quickly.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Robin and Keebler, Wanted to let you know I had a long conversation with this man today. I think he's going to follow through with the suggestions we discussed. He said the phone call helped him. I think he feels as if he now has direction and hope.
Again, thank you for your thoughts last night. I appreciate the support.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Also consider the possibility that he took abx that included fluoroquinolones. They can cause the ringing in ears and possibly the tingling if it is in any way a form of neuropathy.
Just a thought. Thank you for your time in trying to help him.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Hi Lymetoo, Good suggestions, but I think it's likely he's only had Doxyclycline. He told me today that he found the old medicine bottle and it was Doxy, 100 mg 2 x per day for several weeks.
He doesn't remember what the RA doctor gave him. Based on so many other cases around here, it was probably more Doxy, same dose, just for a longer time. At least he gave it long enough for symptoms to clear.
He's convinced he has chronic LD, but both doctors have told him no, they don't think he could have Lyme.
His GP is a good friend, is his hunting buddy, and is concerned that he had to give up on helping him. He wants to take his GP a copy of Dr. B's Guidelines and see if he'll put him on a stronger dose of Doxy for a longer time.
I've suggested he be evaluated by an LLMD in NC and see if his GP could work with the LLMD in treating him. I think he could also have co-infections, like Bartonella.
Since his GP is so interested, I sent info about the ILADS Lyme Conference in Ft Lauderdale in Oct. It would be wonderful if he would go.
Thanks so much for sharing your thoughts.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
PM sent to you with comprehensive information to pass along to this hunter gentleman as well as names of LLMDs in NC (I don't know of any in SC).
Posts: 8981 | From Illinois | Registered: May 2006
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Thanks for the information and concern!! No, there are no LLMDs in SC, but thankfully, there are a couple in NC.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Muscle biopsies are conducted in Europe more often than in the US.
I had one done on 10/14 which showed the Lyme bacteria but I've been told it's inconclusive.
Don't understand it.
Posts: 20 | From New Jersey | Registered: Aug 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Moons, it's important to understand the politics and denial tactics of the IDSA. An IDSA affiliated doctor will 99.99% of the time discount even the most definitive of tests for lyme / TBD.
Or, if they agree, do not treat accordingly but don't think it's much of a problem and will just basically blow fairy dust at you and say "get on with your life"
Be sure to see documentary: Under Our Skin, and the sequel: En (something, Emergence?)
These organizations have good detail for understanding why an ILADS educated LLMD is best.
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