The good news is that my friend Jim has started his 2nd month of Tetracycline, under the care of Dr. P. in CT. His cognitive symptoms have shown some improvement, which is a huge relief. Of course, since he's at the very beginning of treatment, he's still dealing with his other symptoms (and herxing), especially stiff neck, ``boiling cerebrospinal fluid'', fatigue, head pressure/ache, stiffness, balance problems...
But here's what I want to ask about. One of his most persistent symptoms is a skin condition. He describes it as bumps that seem to be embedded in the skin. They sting or prick, rather than itch (he calls them ``stingers'' or ``wasp bites''). In some places, it feels like a splinter or needle is stuck in there, so if he moves the wrong way, there is piercing pain.
The bumps can be pretty hard to see, although they have caused some pigment changes and scarring in places. They also seem to affect hair growth (the hairs either get ``wimpy'', or stop growing). Sometimes they seem to leave little fibrous plates on the surface of the skin. They are mostly on his back, the backs of his thighs, and his calves, although they have also been other places. He gets some temporary relief with Epsom salt baths.
His Western blot was done by Igenex, but the rest of the testing was done by Labcorp. We recently found out they messed up, and didn't do the co-infection testing. He has to go back to get that re-done. But from what many of you have said, that testing isn't very reliable.
Does this skin thing sound like part of Lyme, or does it sound like any of the co-infections?
I don't post often, but I've been reading the board every day, and have continued to learn so much from all of you, both about Lyme and about kindness, courage, and strength.
With many thanks and all best wishes, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I can only say that I have something like that. Mine itch on occasions but other times also burn. Most of the time I don't feel them.
I have no clue what they are.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Hi Viva, From you description of Jim's skin problems, you may find this site informative. Pronounced with a hard 'G', many with this condition have Lyme disease.
posted
John, You're the 2nd vote for Morgellons (another came in via PM).
Areneli, Has anyone ever suggested Morgellons to you?
I went to the Morgellons site, of course looking for information on treatment, but I guess so little is known at this point...
Is the current thinking that dealing with the Lyme will also take care of the Morgellons? Or are there treatments aimed specifically at the Morgellons? Or at least at symptom relief?
Would it be worthwhile to see one of the LLMDs/NPs that have a special interest in it? Or is a good LLMD enough?
Thanks in advance for any guidance anyone can offer.
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
I would suspect morgellons also because of the fibers. The site is very informative but can be overwhelming as there are varying degrees of infection with the people who have it. pattiecakes
Posts: 687 | From PA | Registered: Oct 2004
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posted
I would suspect Morgellons too. One of my phone support friends in Northern NJnseems to be having the same problem too. This is what she suspects. I would check out the website other people have recommended.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
My wife and I both had Morgellons and Lyme. We no longer have any Morgellon symptoms and the Lyme spirochetes are slowly dying off. We both used many herbs that are posted by jwf on this site. Believe it or not, the fasted relief has to do with aromatherapy. An electronic diffuser with menthol crystals has stopped the itching/ biting for many people. Menthol is antibacterial and anti-fungal.
Blue Skies...........John
Posts: 134 | From North Carolina | Registered: Sep 2004
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posted
It seems to be a unanimous vote for Morgellons...pattiecake, you're right, the Morgellons website is a bit overwhelming. Thanks for the reminder that there are varying degrees of symptoms.
John, I'm going to do a search of your posts. I only know the tiniest bit about aromatherapy, so I may PM you for more information, if that's okay.
Sort of feels like out of the frying pan and into the fire...and we haven't even dealt with co-infections yet.
Thanks, as always, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi viva,
Your friend might want to show this to Dr. P, if he hasn't already. It's such a controversial disease, I'm sure he'd be interested in checking it out.
Also, consider taking pictures of it, in daylight for the clearest picture you can. Did your friend get bitten in CT, do you know?
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Surprisingly, when Jim mentioned the skin stuff, he said Dr. P. didn't seem very interested--although I'm not sure how detailed Jim's description was. Depending on how much "fog" he's experiencing, Jim can either be a very detailed reporter, or say next to nothing.
But you're right, I think it's critical for him to mention it in their next conversation, and to specifically ask about Morgellons. I bet Dr. P. is also waiting on the results of co-infection testing (when it finally gets done--curses to Labcorp!!).
Jim's original tick bite was probably in MA, about 15 years ago. The more recent one was in TN. We're probably dealing with both acute and chronic disease. What are you thinking about the possible significance of being bit in CT?
So you think Dr. P would be open to considering Morgellons?
Thanks, Shaz!
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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