Dr. C in Missouri

[eann]

JB, I am so glad your visit went well. Be careful with the Flagyl. It is one of the antibiotics that Dr. C lists as having the worst Herx reactions. I found it interesting too that he did not want you to have a bad Herx reaction. He said to back off immediately, as it can actually leave you in a worse state than when you began.

I started on Doxy and when I raised the dosage to 2 pills twice daily, I had a major reaction/herx. I had to back down to 1 pill twice daily and stay there.

What surprised me the most was the brain symptoms that I had were intense. I knew I had neurological involvement from an MRI, but that herx left me with no doubt that the critters are in my brain.

Time to start reading now. He gives you a lot of homework!

[Kim]

Gosh, it sounds like a lot of us have the eye pain.  I've driven my ophthalmologist nuts, who obviously, isn't up on Lyme.  Only, in my case, the intense pain and inflammation is my right eye, but my left eye has a blister on it.  My right pupil is always larger than the left and they can see more inflammation behind that eye.  Both eyes still get very red and inflamed sometimes, but I hesitate to use the steroid drops because I'm trying to get my immune system to do the work (funny, it doesn't seem to want to work as hard as I want it too).

Dr. C. gave me a prescription for the brain swelling, but what I've found that works even better for me is Mucinex.  It really relieves the pressure so your eyes don't feel like they're going to pop out when you bend over.

JB, glad you had such a productive appointment.  Do everything he tells you to and you'll be fine.

Elaine, so happy your son is making significant progress, finally.  And I'll just bet he stuck to protocol this week on Spring Break in Florida! :roll-laugh:  To keep your sanity I wouldn't even ask him about his trip. 😉

Take care…..kim

[JBJBJB]

It's really interesting you girls mentioned about eye problems. Last year when we took a family portrait for Christmas card, I realized my left eye was “dropped” and my husband told me it was due to getting old. Hahaha…. he always has his saying…. by the way, when my lungs had problems he said I was over weight, out of shape, that was why I was short of breath. After the doctors showed him my scarred lungs, he admitted he “misdiagnosed” me….

Kim,

Both of my eyes have blister alike calcium cysts. From time to time I have to go to my optometrist to get them picked out.

Kim, that is very interesting the Mucinex helped you. I am so congested. I take that from time to time. It helps unload the heavy phlegm.

Lynne,

I do have some pressure on my left eye. It felt painful but it comes and goes.

Maz,

Now we don't feel like “weirdos” because we have these lefties' problems. I hope after the treatment the left eye can open up normally and level well with my right eye.

Anne,

Yes, I have tons to read. I will try to follow Dr. C's advice.I told him I don't eat a lot of gluten related food, only from time to time I have my pasta noodles. I have my own theory about this whole gluten diet. [/color]

:JB:dude:

[Roz]

Hi Ladies,

Hi have this horrid eye stuff going on as well. My eye didn't droop but I have more like muscle twitching.

I have heard with Lyme and co-infections the eyes are one of the last things to heal, as anyone else been told that?

I found this site about cranial nerves.

http://www.gwc.maricopa.edu/class/bio201/cn/cranial.htm

BRAINSTEM NUCLEI OF THE CRANIAL NERVES

A. The cranial nerves:
The cranial nerves (with the exception of I and II) originate in the brainstem, which includes the midbrain, the pons, and the medulla. The 12 cranial nerves can be divided into sensory, motor, or mixed nerves. Overall, sensory nerve nuclei tend to be located in the lateral brainstem, while motor nuclei tend to be located medially. Nerves with mixed sensory and motor fibers must have more than one nucleus of origin – at least one sensory (afferent) and one motor (efferent). Sometimes more than one nerve will originate from a single nucleus: for example, the sense of taste is spread across at least two nerves but merges into a single nucleus. Finally, keep in mind that any sensory nucleus is receiving input from the periphery, but the sensory receptor cell bodies are never in the nucleus itself. They will always be located just outside the CNS in a ganglion.

http://thalamus.wustl.edu/course/brstem.html

JB I am so glad to hear your appointment went well.

Hugs,, Roz

[Roz]

Here is an article from the Journal Of Neuroinflammation

Possible role of glial cells in the onset and progression of Lyme neuroborreliosis
The CSF of LNB patients shows abnormalities within 3 to 6 weeks after infection, manifested as mononuclear pleocytosis, persistent plasma cells, intrathecal synthesis of B. burgdorferi-specific immunoglobulins and presence of B. burgdorferi DNA 11]. Immune mediators such as cytokines and chemokines implicated in playing a role in the pathogenesis of various inflammatory diseases of the nervous system have also been found in the CSF of LNB patients 12–19]. Further, microscopic evaluation of lesions from patients with LNB shows perivascular monocytic and lymphocytic cell infiltration concomitant with the presence of B. burgdorferi DNA 20,21].

Recently, we reported that the interaction of B. burgdorferi with rhesus monkey brain parenchyma elicits the inflammatory mediators IL-6, IL-8, IL-1beta and CXCL13 from glial cells, with concomitant oligodendrocyte and neuronal apoptosis 22]. In addition, primary cultures of microglia or astrocytes produced IL-6, TNF-alpha, IL-8, and the macrophage inflammatory proteins CCL3 and CCL4 in the presence of live B. burgdorferi 23]. Several of these mediators are associated with LNB 24,25], play a major role in the recruitment of leukocytes into the subarachnoid space in various types of infectious meningitis 26], and in the inflammatory response mounted by the CNS in other neurodegenerative diseases such as multiple sclerosis and experimental autoimmune encephalomyelitis 27,28]. We therefore reasoned that glial cells could be an early source of the cytokines and chemokines detected in the CSF during LNB. We further anticipated that this inflammatory context could potentiate glial and neuronal apoptosis, based on our earlier observations that documented that live B. burgdorferi induced inflammation and oligodendrocyte and neuronal apoptosis in brain explants ex vivo, and following intracerebral inoculation in vivo 22].

http://www.jneuroinflammation.com/content/6/1/23

I been trying to study a little on cytokines as well. I am just a hairdresser but I am trying to learn some of this. I have heard the cure is the right cell to cell signaling.

Hugs, Roz

[Roz]

Role of cytokines in rheumatoid arthritis.
http://www.ncbi.nlm.nih.gov/pubmed/8717520

 

[Lynne G.SD]

O.K girls,while we are on the topic of weird symptoms,does anyone have tiny pin head sores or water blisters on their heard,neck or ears.Mine come and go but never go away for long.Since changing antibiotics it seems worse.

[Kim]

[user=31]Lynne G./SD[/user] wrote:

O.K girls,while we are on the topic of weird symptoms,does anyone have tiny pin head sores or water blisters on their heard,neck or ears.Mine come and go but never go away for long.Since changing antibiotics it seems worse.

Yes, I have both. :doh:  The water blister is on my eyeball and drives me nuts because my bottom lid rides over it.  The doctor said if he removes it it will probably come back so I'm just tolerating it.  The small, hard sore is on my cheek and I think has a calcium stone in it, yuck!

Both of them have been there the five years I've been sick and seem unchanged with all the abx. Annoying, huh?

Take care…..kim

[JBJBJB]

Roz,

Thanks for the information. It's so complicated. :crying:

Another thing Dr. C mentioned to me was strep throat. I had sore throat all the time during the past 5 years. I often went to the doctor's office for strep throat test. Often they came back positive. Kim, I remembered you have this problem, too. However after I started all the rheumatoid problems, I still have sore throat but no more strep throat. Dr. C said he found a lot of Lyme patients have frequent strep infection.

Oh by the way here is a story from Discovery Channel. I am sure a lot of people have seen this. <span style="color: #000000][/color] 

 

[Roz]

Hi,

If you look at the Lyme Neuroborreliosis article from the Journal of Neuroinflammation it talks about the cytokines in Lyme.

Them if you look at the Article in the Role of Cytokines in R/A most of them are the same and match.

I only put the Article on the Role of Cytokines in R/A because so many of them match.

 

[Kim]

JB,

You have a good memory.  Yes, I used to get strep every year without fail each January, but didn't have a single episode the whole time I was treating with abx.  Nice benefit.

kim

[Kim]

Geez, Elaine, sorry about your other son and the tick bite.  Did Dr. C. put him on Doxy?

Take care…..kim

[nspiker]

Hi Everyone,

I just saw this thread…..

Me too, me too…..most of my symptoms are left-side related.  My knee pain started with the left leg, pain in my arm (between elbow and shoulder) is in my left arm only, and eye pain is in the left eye. 

Kim, Mucinex is a wonder drug for me and really alleviates head pressure and plugged ears.

Elaine, so glad your son is doing better!

nancy

[Maz]

[user=1552]nspiker[/user] wrote:

Elaine, so glad your son is doing better!

 

Me, too, Elaine!!! I'm rooting for him from the sidelines, too! This is terrific news. 😀

Peace, Maz

[JBJBJB]

Flagyl third day, one full Flagyl 250 mg today.

Shoulders joints are on fire!!! Especially during the night.

Next week if this sharp pain is getting worse, I am going to see my rheumy, asking him to give me two cortisone shots on my shoulders.

No pain no gain!!!

JB

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