Lyme it is!!! Finally a diagnosis .

[carries]

Well after all this time I finally got an LLMD to say it is Lyme. All my symptoms started 3 years ago. They just seem to move to different parts of my body. Currently it is in my face. I have a horrible tingling burning numb sensation on my left side of face. This has been going on for 5 mths now…..and that is what finally led me to an LLMD and IGENEX. My tests came back positive for both IgG and IgM according to IGENEX criteria…but negative for CDC. He is treating me with minocyline 200mg daily and clarithomycin 2 times a day as well. He said he wish he could do IV because Im a candidate for that …but many insurance offices pay for it….and quite honestly I dont think he does them….so I will ask my RA dr this friday! ITs been 3yrs of joint pain, jaw pain, stiff crunchy neck, knee pain, and now this facial pain…..I really hope now I can be treated correctly and this go into remission. My LLMD wants me off prednisone so I will taper off that. By the way When I did my test through IGENEX I was on prednisone minocycline and plaquinil and it still came back positive.

A month ago I noticed a brown circle on my side by my rib….its circular….is this the rash for lyme…my dr said yes….but I thought it comes at start of exposure not 3 yrs later????? There is a half a circle on the other side?? My tummy is tan from sun so not sure if that is why it came out….any insight would help. Can someone also shed light on dosage of IV treatement for lyme so I can share this with my RA dr and hopefully he can administer it!

[Maz]

@carries wrote:

A month ago I noticed a brown circle on my side by my rib….its circular….is this the rash for lyme…my dr said yes….but I thought it comes at start of exposure not 3 yrs later????? There is a half a circle on the other side?? My tummy is tan from sun so not sure if that is why it came out….any insight would help. Can someone also shed light on dosage of IV treatement for lyme so I can share this with my RA dr and hopefully he can administer it!

Whew, Carries! At long last. So glad you finally have some answers…the symptoms sound classic. Welcome to the Lymelands and those who know just how hard it is to get an accurate diagnosis. It can take years of traipsing to different docs and figuring out the culprit(s).

The brown circle may be a “late disseminated” EM rash. These are what I think happened to me in 2006 just as my stiff neck,s swollen glands, migrating arthralgias/myagias began (and quickly morphed into RA), as I recall my first tick being in the summer of 1998 (at least the first tick I actually saw). Late stage rashes can appear at any time…with herxing or just when run down. Trudi here has had a few of those and I still get smaller, coin-shaped EMs when herxing and starting a new protocol…in fact, lots of weird rashes can come and go with Lyme and coinfections. I just started a new detox regimen and a cluster of red dots came up all over one ankle that looked like broken blood vessels….then disappeared within the next 48 hours.

I haven’t done IV rocephin for Lyme, but there may be others here who can share the doses their LLMDs used. Ususally, when there is neuroborreliosis, the IVs need to be given for a period of weeks/months with a port installed so you can change the infusion bags yourself. Parisa is an old hand at doing this kind of stuff for her hubby from a serious case of dermatomyositis (now in remission!). Perhaps your new LLMD will consult with your rheumy about doses or you can call him for details to pass to your doc? You may get resistance as IGeneX labs are not recognized by most mainstream docs.

It can be a long old road getting Lyme turned around – they say as long as one has had it (and most don’t know!). Working with an experienced LLMD can make all the difference, but chronic Lyme is usually more than just a simple infection that can be treated with a short course of abx. There are coinfections, weakened defenses, poor detoxification, cystic forms, etc to deal with, so it really should be called “Lyme Syndrome.”

Did you new doc diagnose any coinfections? Suggest any cyst-busting treatments?

[carries]

Thank you Maz for the detailed description of your experience….what is EM? Unfortunately no he didnt tell me about any coinfections…..all the coinfections he ordered through the regular University Hosp LAbs that I use….he only ordered two from IGENEX. I will take the two antiobiotics he gave me for 3mths…then I see him again and we will see where we are at.

[nspiker]

Hi Carries,

Another one joins the group 😉 ! This club just keeps growing….

My first thought is, are you seeing a really experienced LLMD? The reason I say this is because you don’t want to waste any time on the wrong protocol. If your LLMD didn’t mention any co-infections, I would be cautious, because most of us have both lyme and co’s. Co-infection testing is historically inaccurate, and most LLMDs treat based on a clinical diagnosis of symptoms.

My Igenex Babesia test was equivocal, yet I have responded positively to every anti-malarial drug there is. There is no question, that for me, a protozoa is the main culprit in my illness. I think Parisa would say the same about her husband’s illness. The reason this is so key is that it requires anti-malarial drugs, along with antibiotics, to touch a protozoa/parasite.

An experienced LLMD would be able to order IV treatment, if that was required. At this point, since you are just beginning treatment, you may not need IV’s. Honestly, it’s a big hassle, and intrusion on your life. I’ve used IV Clindamycin per the AP protocol, but otherwise have been on orals only, and have improved almost 90%.

So happy for you that you have anew course to follow….
nancy

[Valsmum]

Congratulations on your diagnosis. It feels good to finally put it in someone else hands, at least for me it felt that way.
I didn’t know where to turn and I was in such pain, I’m surprised I got enough strength up to fly to my LLMD. I have very similar symptoms as you, jaw pain, knee pain and plenty other joint pain.

I hope you get well,
take care,
Sheri

[Maz]

@carries wrote:

Thank you Maz for the detailed description of your experience….what is EM? Unfortunately no he didnt tell me about any coinfections…..all the coinfections he ordered through the regular University Hosp LAbs that I use….he only ordered two from IGENEX. I will take the two antiobiotics he gave me for 3mths…then I see him again and we will see where we are at.

Hi Carries,

Nancy covered the Lyme coinfection thing well and I won’t reiterate on that except to say I second everything she says. 😉

An EM is just short for an “erythema migrans” rash, which is the classic rash, also called a bulls-eye rash, that is the result of a tick infected with borreliosis (Lyme). It’s estimated that less than 50% of people get an EM rash or it goes unnoticed (as it might be on the scalp, groin, under breasts, back, etc). Also, not everyone gets a rash that looks like a classic bulls-eye, which is why this can be so difficult to diagnose. Lots of people get pooh-poohed by docs saying their rash must just be a spider bite or some other anomalous rash.

All the best with your new abx protocol, Carries. Hope the herxing is bearable for you – don’t forget to detox, detox, detox!

[carries]

Thank you for all your replies. I went to my RA Dr today and he couldnt believe the results were positive….and agreed with the findings. He wants me to see a infectious disease dr referred by him to see if I need IV since it has hit my nervous system. So I am going to a dr he trusts. Im so glad he was in agreeance and didnt discredit the Lyme Dr I went to in PA.

He wants me to take doxy instead of mino and he said not to take the clarithmycin saying its not usually used for lyme protocol…but I am going to take it till I find out about IV bc my Lyme Dr…I feel prob knows more about lyme.

Maz, How are you feeling ? Are you in remission ?

[Maz]

@carries wrote:

Thank you for all your replies. I went to my RA Dr today and he couldnt believe the results were positive….and agreed with the findings. He wants me to see a infectious disease dr referred by him to see if I need IV since it has hit my nervous system. So I am going to a dr he trusts. Im so glad he was in agreeance and didnt discredit the Lyme Dr I went to in PA.

He wants me to take doxy instead of mino and he said not to take the clarithmycin saying its not usually used for lyme protocol…but I am going to take it till I find out about IV bc my Lyme Dr…I feel prob knows more about lyme.

Maz, How are you feeling ? Are you in remission ?

Ach, Carries….it’s great your rheumy is acknowledging the Lyme, but clarithromycin is very much a Lyme treatment!!! He’s going by the IDSA treatment guidelines, which are inadequate for chronic Lyme. LLMDs take a combination approach and it would help a lot to understand the complexities of treating chronic Lyme and coinfections of Lyme to print and read the following links:

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

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

Yes, neuroborreliosis does need treatment with IVs and usually IV rocephin (aka ceftriaxone)is used. However, infectious diseases doctors adhere to the restrictive IDSA treatment guidelines, not the ILADs treatment guidelines (see link above). Being assessed for coinfections of Lyme and receiving treatment for suspected coinfections is imperative, because untreated coinfections leave patients sick. Testing for coinfections is just as bad as standard testing for Lyme, so these must be diagnosed clinically and treated empirically. LLMDs will use a combination oral approach, not only to hit coinfections of Lyme,but also the various pleomorphisms of the Lyme spirochete (cell walled spiral form, cell-wall-less L-form, cystic forms, etc). Doxy alone is usually not enough. 😉

If you check out my current protocol, I’m on tetracycline, clarithromycin and plaquenil to hit the various pleomorphic forms of Lyme, and coinfections, bartonella and babesiosis.

I’m doing great, Carries, thanks for asking!!! Feel like I’m almost ‘there’ now and just working on detoxing and re-gaining lost stamina. Most days I feel I am RA-free. It’s taken me 4.5 years, with lots of hills and valleys, but if you could have seen me in the beginning, you’d have seen a very different woman…I was very severe with every joint and muscle affected, including my jaw. It’s been quite a journey, but one I don’t regret taking…and not a single immune-suppressive med! 🙂

[Eileen]

Hi Carries,

It’s a mixed blessing getting the diagnosis. Happy/sad, kind of relieved in a way? My son had secondary EM rashes w/late disseminated neuro. LD, even after 2 yrs. of treatment. That was 11yrs. ago. My son was gestational, breast milk+ culture [me], and bitten twice by the age of 2 yrs. old. He did not do I.V. I couldn’t imagine a 2 y/o plugging into I.V. or how we would have managed to keep his hands from ripping it out.

I agree that I.V. can be a real pain, but if I had the opportunity to plug into I.V. before orals, I would jump for it. I did not use Rocephin b/c of gall bladder disease in the family. Dr. recommended it go straight to I.V. Not one oral antibiotic was in me so I felt as if a bomb had been dropped in my body. Claforan & flagyl is what I administered my first time 24/5 by continuous pump; I did extremely well on I.V. yrs. ago as I was so neuro., I couldn’t even walk a straight line or speak a full sentence. My fourth month into I.V., I was out shopping and life was coming back and I was walking a straight line. 😉 I also used doxy. I.V. drip which collapsed the veins in my arms so needed to stop and then on to I.V. Zith. 24/5 pump. If my memory serves me correctly, I did almost 12 mos. of I.V. in total.

Be sure to push the co-infs. Babesia is nasty. These can serve to tangle up everything making you even sicker. Make sure you are loading up on probiotics and watch diet.

Be well, Carries…
Eileen

[Author]

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