Lyme symptoms????

[carries]

Symptoms:

A week prior to symptoms I had an occasional shooting feeling in eye nothing painful though and it only came occasionally and would last a second. The sensations though on the left side of face all started the day after I was taking Diflucan . My dermatologist had perscribed it for 10 days….(Myface was really bumpy and itchy so I thought maybe I had a skin yeast infection.) After taking the second day of it the symptoms began. Not sure if related. But I did find parathesia as a rare side effect. It started with tingly itchy cold sensation in the left nostril. Later it moved to my cheek right next to my left nostril…then it moved to left side below the nose above the mouth…then cold tingly feeling upper left side of mouth…..then about 3 days later my left eye started to get numb on lower lid only….and itchy feeling followed….intense itchy feeling. Thought it was allergy but no med would relief the itchiness so I knew it was nerve related. There is no pain on my face just annoying cold tingly itchy sensation. This feeling started on march 16th and has been here since then. It has not gotten any better. I had an MRI done. It came back ok. My dr gave me a high pulse of prednisone to see if it would relieve the discomfort. It did not help at all. I am now seeking Physical Therapy for my TMJ thinking that it may be the cause of this discomfort….maybe a nerve being compressed. Another thing to consider is that I did have a cold sore on my mouth and possible my left nostril 2 weeks prior to all of this. I also am under a lot of stress and what i think might be anxiety. I also have TMJ and wear an orthotic at night…I have been wearing it all day since 3/28. I also have a MCTD and Raynauds.

I am nervous that this is Lyme, MS, or Bells Palsy? My orthodontist seems to think its related to my TMJ and to wear my orthotic all day long rather than just at night and that maybe a nerve is compressed. I do notice myself clenching alot and possibly grinding even with the orthotic in my mouth…you can even see the wear on it …I dont know how else to stop this clenching and grinding. Sometimes I feel like I do it more with the orthotic in. I went to Physical Therapy this morning( my sister and brother n law own their practice) He did some manual manipulation where he placed his hand inside my cheek and massaged….the tingling went away and the itchy eye was gone….but of course as soon as he released it it came back. He also did some work on my had as well and felt tightness. What do you think is going on?

I also had an MRI done and it did not show MS or Bells Palsy. IT came back ok. I have been out of remission from my MCTD since 09. It was when I returned from the Virgin Islands …about 2 weeks after …the joint pain everywhere started and from then on I have been on prednisone on and off to control the joint pain. When I was in the Virigin Islands I was bitten by mosquitos out there…..so bad for the first 3 nights I couldnt even sleep thats how bad it was…and now they have even put up mosquito tents about the beds to keep out the bugs. So I am not sure if this is related or not . There was also a dog there that wondered the condo complex and my sister let it into the condo so not sure if the dog was carrying something as well that could have bit me. There was also a random horse as well….and not sure if the dog was by it or not. Overall I feel good other than this sensation on my face. My its the prednisone that keeps the pain away??

My current meds are:

Plaquinil 300mg
Prednisone: Pulse dose now but usually 4mg-5mg daily
Prilosec :1 daily
Baby Asrpin

Ibprofuerin as needed
Flexiril as needed
Valtrex as needed (cold sore on mouth only)
Vicodin: as needed(period only)

Fish oil
Prenatal
caclium/D3
Vit c 2000mg
Vit b complex 75
Milk Thistle
Probiotics

[hmom]

Carrie,

If it helps, I also was diagnosed with MCTD based on an elevated anti-RNP antibody test result. I had many of the same weird nerve issues you describe – and then some – as well as a bout of migrating, severe joint pains. Among the odd things I had on and off were sound sensitivity and ear pain, grinding teeth and painful locking jaw, annoying eye tics and “sand in the eye” sensations. Also early scleroderma symptoms. After a frustrating period of endless doctors’ visits and coming to this board last year, I was found to have Lyme and several coinfections. Herxes for me often start with itchy bumps on my face, an aggravation of nerve sensations (typically migrating, and yes, often a cold or itchy feeling), and anxiety. Afterwards they disappear. Lyme loves the nervous system, so I wouldn’t be at all surprised to see this lurking for you. It can flare when your immune system is low from stress or illness, and it often triggers or mimics AI conditions. Interesting you came out of remission after your mosquito experience.

Good news is, antibiotic treatment does work, though it takes a while, has ups and downs, and requires an experienced LLMD. My LLMD saw my elevated anti-RNP level as a symptom of the Lyme, not a discrete illness, and assured me he typically sees levels return to normal as the Lyme is reduced and the immune system returns to normal function. After a big herx this winter, I continue to improve, and once my Lyme labs look really good, it will be interesting to test my RNP. (My LLMD doesn’t recomend testing prior, as he feels everything will bounce up and down until the immune system fully recovers).

Definitely worth checking out…

[carries]

Thank you so much for replying. I appreciate you sharing your story too! All sounds way to familiar. I believe it is Lyme as well. I just dont have any lyme drs in my area (Cleveland)….and I had 4 lyme tests done by different drs and they all came back negative so the dr chooses to toss that idea to the side. I still think that is what it is. I get my mri back monday. They are thinking trigeminal neuaralgia (spelling??)I may go see a LLMD in PA this summer when I have off from work. (teacher) What protocol does your dr have you on??? I started taking Doxy since I thought the mino may have been making me achy after a year of taking it. It worked beautifully the first year then I got really achy and not sure if its the mino or herx so I switched to Doxy. I have been w/o and abx for 7mths and decided to go back on it. My RA dr wanted the flare under control….(4mg of prednisone) then try abx again. WEll I just started it up this week. (Doxy) I would normally do MWF but my RA dr wants me on it 7 days a week 200mg daily….Iam going to start lowwwwwww and slowwwwwwww! That worked great for me last time. I did not herx when starting it. I will eventually get to 7 days. Please let me know the protocol your dr has you on?

[hmom]

It’s my pleasure to share my experience if it can help! I too was tested for Lyme by my GP, a rheumatologist, the infectious disease department of a top university, and two of the best neurologists in DC. All came back negative. I could have saved myself so much time and frustration if I had known that the standard tests (ELISA and even Western Blot) are basically worthless. If you suspect Lyme there are two tests you should insist upon: a Western Blot from Igenex, and a CD-57 test (Stricker Panel) from Labcorp. Neither should be too difficult to get – you can order the Igenex test kit yourself, and just have your doctor write the order for the blood draw. Labcorp is a major national lab; there is one near you. Make sure you get copies of both – there is a difference between what the CDC/doctor may consider negative versus Igenex/LLMD. With the CD-57 test, a low count is basically definitive proof of Lyme, as nothing else is known to suppress it. These were the two tests that clinched it for me. You might also want to get Labcorp’s tests for other tickborne illnesses, although unfortunately those for Bartonella and Babesis are also generally worthless and usually clinically diagnosed. I did test positive for Ehrlichia and mycoplasma pneumonia – both carried by ticks.

I started – under the care of an open-minded but inexperienced LPN – on minocycline 100 mg BID. Also had a couple of 5-day courses of Flagyl. After an initial herx of several weeks, I felt totally fine after several months. Eight months later, however, in winter of 2010, I suspected Bartonella coming out, and requested a switch to Doxy with Rifampin. After 10 days I got what felt like a huge relapse, and came to this board, panicked. I went back to the mino, and requested and got an IV course of Clindamycin, followed a week later by a course of IV Rocephin. My body just could not handle the toxic load, and I collapsed with the herx to end all herxes from hell. Switched to a really experienced LLMD.

His first goal was to let my body detox and recuperate, while keeping the infections “on hold”. Ultimately we will then approach everything very strategically. (He concurred on the Bartonella; Ehrlichia and mycoplasma are now negative). Here is what I’m currently taking:

Mino 100 mg BID M-F
Azithromycin 250 mg M-F
Deplin (a medical grade supplement) 15 mg M-F
Flucanozole 100 mg M-F
Probiotics, antioxidants, and anti-inflammatories including COQ10, green tea, and fish oil.

I feel TONS better. It is amazing how much swelling and inflammation I didn’t even know I had have dissipated. I stll expect I’ll continue to have herxes to some degree until all infections are put in their place, but much more reasonable and presumably fewer and fewer as time goes on.

This LLMD has a pulsed philosophy, where abx are rotated with longer and longer off periods. I’m starting right now with just weekends off. His goal is to let the abx do their job, then let the body rest and recuperate. The off periods also allow the immune system to “retrain” itself gradually, ultimately with the goal of it doing the work it should with a hugely reduced infectious load and abx no longer necessary. This doctor feels the reason so many people experience relapses when they have been on continuous abx therapy for long periods is that the immune system lets the medication do the work for it, then can’t handles flares due to stress or illness, or sudden stopping of therapy. Hey, the guy is an infectious disease specialist by training, highly regarded in that field and one of the best LLMDs around. Makes sense to me! Seems to mesh well with the AP approach of pulsing and tapering.

Most LLMDs seem to recommend a monthly schedule – any way to coordinate with school breaks?

PS – When I shared my test results with the rheumatologist who inisted I “just accept the fact I have fibromyalgia,” his response was, well maybe you were sick before, but you aren’t now. This from a doctor practicing in a Lyme epidemic area!! I wonder how many of his patients are suffering needlessly…unfortunately, my story is not at all unique around here, I’m finding out

[carries]

Thanks again! All of the info is very infromative! We are not a lyme state so I dont know too much about it other than what I learn from all of my friends on here. Thank you!

They repeated my mri again…with and without a contrast so I will find out results tomorrow. They were focusing on trigeminal nerve….this time….

Would lyme show up on mri?

Do you know how many days I should be off of abx when getting blood tests? I see a naturopath in a couple weeks so he will write the script for my blood tests.

I love my ra dr ……he is very open minded but I dont want to step on toes…he has taken very good care of me. soooooooo I would rather ask the naturopath.

[carries]

I may also go back to mino and try that again…maybe it was just a herx and not dile! After all I wasnt on prednisone anymore to hide the herxing for me??

[hmom]

I understand Lyme can show up on an MRI, as white spots or lesions typically seen in MS. Presumably these would be associated with MS type symptoms; when the Lyme is treated, the lesions and symptoms go away. In fact, there are some who believe that MS is primarily a Lyme manifestation. However, I’d bet most people with Lyme have normal MRIs. (One of the neurologists I saw had one done on my brain and spinal cord – all clear, even though it was done when pain and tingling were really bad).

Lyme toxins are very irritating to the nerves, and if your immune system is trying to get at the critters where they live (often in the nerves), it can cause inflammation as well. This causes them to have all kinds of problems – pain, not working quite right, getting overly sensitive, etc. Raynaud’s is often a symptom of infection because the nervous system just isn’t controlling circulation and temperature response properly.

As for abx, I’m not sure you’d have to go off them before getting tested, but you could probably call and ask Igenex. Wouldn’t affect the CD-57 test, I would think.

Can naturopaths order blood tests?

[marypart]

Carrie,

You could post in the Seeking a Doctor forum over at Lymenet.org

There are at least a few Lyme doctors practicing in Ohio, judging from a quick search of the forum.

Maybe you could at least get tested and find out if you have Lyme, or any of the co-infections.

Mary

[gordbentley]

I had the same sand in the eyes feeling hmom did but they went away when i started the mino. maybe I have lyme?

[Rosemary Perth Aust.]

Carrie this might sound a little strange but have you been taking any B12? You can get it in liquid form now instead of the injections which means you can take it twice a day. It does help the nervous system tremendously. Magnesium also to relax the muscles probably would help. For all I know you could be on both. Just thought I would mention it. Just as a matter of interest they say that mosquitos do not like the B vitamins in people so if they are a pest good idea to take the lot, as they are extremely dangerous carriers of disease. Hope this helps

[carries]

Hi! I am taking a B complex daily…and I just had my b12 blood test and it came back normal. My naturopath is a dr and was able to order me a bunch of different tests….I know he had mentioned ordering the mycoplasma not sure if he did will have to check. He did order a DHEA test and magnesuim blood test too so I hope he wouldnt have problem ordering the rest of them. Fingers crossed.

I am on prednisone 4mg and plaquinil and i am taking the doxy right now but will switch to mino soon here….I wasnt sure if any of those will affect the test I will contact igenex to ask.

I wouldnt say it feels like i have dirt in my eyes it feels as if i am having an allergy fit and it itches. I have allergies so I am able to relate it to that feeling…but I know its not allergy bc its not both eyes….and if I wear my mouth orthotic it helps that itchy sensation bc its not pulling on that nerve and the bacfolen the dr gave me which is a type of muscle relaxer helps that eye too but I feel so brain fog on them. small dose of 5mg 3times a day.

I m going to get my ducks in a row and get this test ordered and I will look into that website as well for ohio drs. Thanks ladies for your help!!! It is greatly appreciated!

[carries]

Hi! So I got my results from my MRI back. It showed inflammation of the 5th nerve (trig.nerve) His interpretation of my results are that :

“Abnormal enhancement coatin fo the T.N. nerve. The nerve is not enlarged but inflammed which can be seen with auto immune diseases such as MCTD or neurtitis, this is more suggestive of the leptomeninggeal process coating this cranial nerve . This can be seen in the setting of leptomeningcal carcinomatosis as well as granulomatous and great nongranulomatous inflammatory processes such as sarcoidosis. Correlation with CSF sampling would likely be helpful”

So he suggested either repeating the MRI again in 4-6 weeks…..(nonaggressive way)…or spinal tap (aggressive way).

Any experiences out there of spinal taps? I think if I do this I will also get my lyme question answered correct????????????

[Maz]

@carries wrote:

Any experiences out there of spinal taps? I think if I do this I will also get my lyme question answered correct????????????

Hi Carries,

According to my LLMD who contributed to the ILADs Lyme Treatment guidelines, spinal taps are really poor as a diagnostic tool for Lyme, unfortunately.

http://www.ilads.org/files/ILADS_Guidelines.pdf
See Point #16

“Lumbar puncture has also been disappointing as a diagnostic
test to rule out concomitant central nervous system infection. In
Lyme disease, evaluation of cerebrospinal fluid is unreliable for a
diagnosis of encephalopathy and neuropathy because of poor
sensitivity (see Section II.8). For example, pleocytosis was present
in only one of 27 patients (sensitivity 3%) and with only seven
cells [12]. The antibody index was positive (>1) in only one of 27
patients (sensitivity 3%) [12]. An index is the ratio between Lyme
ELISA antibodies in the spinal fluid and Lyme ELISA antibodies
in the serum. The proposed index of 1.3 would be expected to
have even worse sensitivity.”

You might find reading through all of the above link that you’ll find some info on symptoms that might be quite intriguing, especially in light of TMJ and jaw pain associated with Lyme. Hope this helps, Carries.

[Rosemary Perth Aust.]

Carries my blood tests were normal also It was a live blood test that showed the lack of B12 and also iron deficiency. Believe me it sure made a difference added them both. The tests have too wide a range the analyst told me and sounds like it. I do not have much faith in them after what happened to me over the years especially when some supps and abx interfere. My cephalosporin does all the time. Makes it pretty hard to get any accuracy.

[Author]

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