Is this Lyme? Looking for LLMD in MA

[BeatingRA]

I have been having some symptoms develop over the past month that have led me to suspect Lyme. Some of the symptoms are sore neck (all day but worst when I wake up in the morning), slight headache, swollen and painful thumb, sweats/hot flashes (I thought it could be menopause as I’m at that age), fatigue (not constantly but when it hits I need to nap; I took two afternoon naps this week which is very unusual for me), a little shoulder or muscle pain at the top of my right arm, some kind of rash on the top of my foot and just a general unwell feeling. The rash is flat, in a half circle pattern, not itchy and isn’t very noticable except when I’m in the shower and it turns bright red. This could be an RA flare starting up but I’d like to rule out Lyme. I’ve been in remission from the RA for the last four years. I don’t recall getting a tick bite but I live in a heavily wooded area and frequently see deer and other small animals in my yard, I do yard work, have a dog that gets ticks.

Could someone send me the LLMD list for MA? Does anyone have any experience with a LLMD in eastern or central Massachusetts? I’m also willing to travel but someone close by would be best for me.

I read all the posts and am familiar with the many people with Lyme on this list but I never “studied” it. If anyone has suggestions for links, books to read, etc I’d appreciate that too.

Thanks a heap…Happy 4th!

Theresa

[Maz]

@BeatingRA wrote:

I have been having some symptoms develop over the past month that have led me to suspect Lyme. Some of the symptoms are sore neck (all day but worst when I wake up in the morning), slight headache, swollen and painful thumb, sweats/hot flashes (I thought it could be menopause as I’m at that age), fatigue (not constantly but when it hits I need to nap; I took two afternoon naps this week which is very unusual for me), a little shoulder or muscle pain at the top of my right arm, some kind of rash on the top of my foot and just a general unwell feeling. The rash is flat, in a half circle pattern, not itchy and isn’t very noticable except when I’m in the shower and it turns bright red. This could be an RA flare starting up but I’d like to rule out Lyme. I’ve been in remission from the RA for the last four years. I don’t recall getting a tick bite but I live in a heavily wooded area and frequently see deer and other small animals in my yard, I do yard work, have a dog that gets ticks.

Could someone send me the LLMD list for MA? Does anyone have any experience with a LLMD in eastern or central Massachusetts? I’m also willing to travel but someone close by would be best for me.

I read all the posts and am familiar with the many people with Lyme on this list but I never “studied” it. If anyone has suggestions for links, books to read, etc I’d appreciate that too.

Hi Theresa,

I spoke to another lady in MA to whom similar happened. She had also been on AP since the early 90s and had been in remission for a number of years, seeing Dr. S. in Iowa. She recalls what her doctor told her was a “spider bite” just a few months prior to the onset of her RA, but didn’t think any more of it until after suffering from a round of breast cancer and having to go through treatments for that…after which her RA returned with avengence. The symptoms of stiff neck, general malaise, fatigue, sweats, etc caused her to think it might be Lyme, too. So she went to see Dr. R, an LLMD in NYC, who diagnosed her clinically with babesiosis and began heavy treatment. Interestingly, her IGeneX labs returned completely negative (possibly treated with the longterm AP she’d been on?), but her babesiosis had never been adequately addressed and her titers were very high. Although IV clindamyin and a tetra can be a good treatment for this coinfection, a 5 day IV series now and again and low dose tetra likely only suppressed the infection until the cancer treatments allowed it to grab hold.

Of course, just living in a Lyme endemic region, it’s possible to be re-infected multiple times. Having had Lyme once doesn’t preclude being infected again, unfortunately. Also, it’s possible for a single tick bite not to pass Lyme and only coinfections (or nothing at all). This scenario is less likely as more ticks that have been tested contain borreliosis than coinfections, but it really depends what the tick was feeding on prior to its human blood meal.

MA is highly endemic for Lyme and also babesiosis, so you’re wise to look into this potential and any other potential causes. A good LLMD will usually do a full work-up to look for dx’s of exclusion, too, but clinical diagnosis is more important in the treatment of Lyme and coinfections as tests are so rotten and Lyme is just so immune-suppressive (often not enough antibody to test).

To get a good idea about how LLMDs treat, you can print out both the ILADs and Burrascano treatment guidelines, both of which are considered Lyme Literate gold standards for the treatment of Lyme.

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Also, it’s worth seeing the documentary, Under Our Skin, and reading Pam Weintraub’s book, Cure Unknown to really understand why this disease has become so political and also why patients have to become their own advocates when looking into this.

http://www.underourskin.com (available for free viewing on Netflix, if you are a subscriber)

http://www.cureunknown.com

Will PM you the LLMD list for MA. As we’re in the height of Lyme season right now, many of these docs will be heavily booked, so if you need to broaden your search, I can also send you lists for surrounding states.

All the best in your researches, Theresa, and hope you find your answers soon and get back on track soon! You’ve done so well up to now, no reason why you can’t do it again! 🙂

[BeatingRA]

Maz,

Thank you so much! Got the PM and will check out the links in your post.

Theresa

[Anonymous]

Maz
I am looking for a LLMD in MA also and found this post. If you have a list and can share I would very much appreciate it. I followed the links in your note and recognize the symptoms described there. I saved the Tick and am wondering where/how I can get an analysis (PCR?) to determine if it is carrying lyme disease. Thank You.

[Maz]

@lnpeterson wrote:

Maz
I am looking for a LLMD in MA also and found this post. If you have a list and can share I would very much appreciate it. I followed the links in your note and recognize the symptoms described there. I saved the Tick and am wondering where/how I can get an analysis (PCR?) to determine if it is carrying lyme disease. Thank You.

Hi Lnpeterson,

Will send you a PM with the LLMD list for MA as requested. 🙂

To get tick testing done, you can send the tick packed in a baggie with a dampened cotton ball to IGeneX labs in CA. Here is the info on their main site. You won’t need a physician script for this:

To download tick testing form:

1. click on http://www.IGeneX.com
2. In left hand toolbar, click on “Forms and Sample Requirements.”
3. In drop-down menu, click on “Test Request Forms.”
4. Click “Download here” under “Tick Test Request Form” to retrieve a printable PDF of this lab requistion form.
5. Follow instructions in the form for mailing tick to be tested to the lab.

Hope the above helps?

[Anonymous]

I would love the list, too. I am in MA and looking into Lyme for my 8 year old son.

Thanks so much!!

Lisa

[Maz]

@lmkmip67 wrote:

I would love the list, too. I am in MA and looking into Lyme for my 8 year old son.

Hi Lisa,

Will send you a PM (private message). Look to top of forum and click beside User Control Panel where it will say (1 new message). 🙂

[A Friend]

@BeatingRA wrote:

I have been having some symptoms develop over the past month that have led me to suspect Lyme. Some of the symptoms are sore neck (all day but worst when I wake up in the morning), slight headache, swollen and painful thumb, sweats/hot flashes (I thought it could be menopause as I’m at that age), fatigue (not constantly but when it hits I need to nap; I took two afternoon naps this week which is very unusual for me), a little shoulder or muscle pain at the top of my right arm, some kind of rash on the top of my foot and just a general unwell feeling. The rash is flat, in a half circle pattern, not itchy and isn’t very noticable except when I’m in the shower and it turns bright red. This could be an RA flare starting up but I’d like to rule out Lyme. …………If anyone has suggestions for links, books to read, etc I’d appreciate that too…..Theresa

Theresa, I was just re-reading some information relating to carpal tunnel (and its cause also applies to many other conditions, and is discussed in the text of it). As I read, I remembered reading more than one post over the past several months where RBF BB posters wrote that they had thumb problems. That struck me as a bit unusual. Then this afternoon as I was reading several articles — am pasting the links below — I saw not only the thumb problem discussed, but numerous other problems that we on this Board often mention. Am thinking this deficiency/inability to convert is probably VERY prevalent in most of us.

[By the way, you and others probably know about clicking on the Edit function, then the Find function when it is clicked, on the top left of the screen, to quickly find references you are looking for. If you use this method, it should make your finding the thumb info and any other malady that you might like to find to see if it is related to this same deficiency [inborn genetic tendency, I’m betting] causing so many problems.] The rash you mentioned on your foot, I’m guessing that could possibly be related to systemic yeast… which could be from a deficiency of good flora in the body — good flora manufacture our B vitamins.

1) http://www.garynullforum.com/GNthisArticle.php?article=190
2) http://findarticles.com/p/articles/mi_m0860/is_n2_v51/ai_7043398/
Reduce wrist pain with B vitamins
3) http://www.doctoryourself.com/arthritis_II.html

Hope you are “all better” now, and that you will keep us informed if anything you do turns out to be helpful.

😛

[BeatingRA]

AF,

Thank you for the links. Very interesting reading. I’m not all better yet but am happy to say I had my first appointment with a nurse practitioner at an Integrative Medicine practice about 2 weeks ago. I was tested for Lyme (Igenex), allergies, thyroid, hormones, candida, gluten and several other things that I can’t remember. I was so happy at that visit, she listened to me, read the extensive forms I had to complete prior to the visit and questioned me on everything on the form. I have a visit in 2 weeks to receive and review the results. Oddly enough, about three days before the visit I developed a yeast infection. The light bulb went off then and I thought the foot rash might be yeast. The NP said she thought it was yeast too. She has me on diflucan and TruFlora.

I will definitely post an update when I get the test results.

Theresa

[A Friend]

@BeatingRA wrote:

AF,

Thank you for the links. Very interesting reading. I’m not all better yet but am happy to say I had my first appointment with a nurse practitioner at an Integrative Medicine practice about 2 weeks ago. I was tested for Lyme (Igenex), allergies, thyroid, hormones, candida, gluten and several other things that I can’t remember. I was so happy at that visit, she listened to me, read the extensive forms I had to complete prior to the visit and questioned me on everything on the form. I have a visit in 2 weeks to receive and review the results. Oddly enough, about three days before the visit I developed a yeast infection. The light bulb went off then and I thought the foot rash might be yeast. The NP said she thought it was yeast too. She has me on diflucan and TruFlora.

I will definitely post an update when I get the test results.

Theresa

Theresa…. A W E S O M E … R E P O R T… You’re on your way!!!! Will keep on looking for your updates!

AF …. 😀

[jakesmommy]

Hello Maz,

I am just beginning my Lyme information and physician search, however not new to the systems;
EXTREME fatigue, body aches, etc etc. I’ve been to what seems like every specialist under the sun
and told I “may” have this or that (RA, Fibromyalgia, Spondylitis, Depression, plain old arthritis…and of course
the “you’re just stressed and tired”). After 2 years of fighting for some relief, refusing steroids, painkillers,
sleep aids, anti-depressants, and expensive anti-inflammatories I’m beginning to feel as if I have Lyme disease.
My titers were above the normal range but the doctors found it “unremarkable” and saw no need to test further.
I on the other hand KNOW there is something wrong – I’m 38 and feel 105 years old. No one except an infant should
sleep 16 hours a day, yet I do consistantly.
I am located in Easterm MA. I would LOVE a copy of the LLMD list you have! Thank you SO much for your
wonderful information!

[Maz]

@jakesmommy wrote:

I am located in Easterm MA. I would LOVE a copy of the LLMD list you have!

Hi Jakesmommy,

Will send you a PM (private message) with the LLMD list for MA. Just click up top beside your User Control Panel where it will say (1 new message) to find your physician list in your PM box.

Sorry to hear you’ve been struggling with your health for so long without answers. This seems to be ‘the lot’ of chronic Lyme patients as it’s an oft-repeated story. It’s nice to meet you, Jakesmommy, and hope you find your answers soon. 🙂

[Anonymous]

Hello, doing some research into Lyme after a friend mentioned that the symptoms I’ve been having for the past five months could be related. I am also in Ma, and looking for the list of LLMD’s in the area. Thank you!

[Author]

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