Aa
Temporal Arteritis
After months of trying to find an LLMD in AZ who I felt comfortable with and who was taking new patients, I finally saw one 11/11 in San Francisco. He diagnosed me with Lyme and started me on two antibiotics.
About a week ago I started having a headache on the right side which then became a headache across both my eyes. I started having aches that traveled to different parts of my body-knee, ankle, elbow, tops of feet, lower leg, cheek, jaw. I noticed some tenderness in my right temple area and a little swelling. After searching my symptoms on the internet, if I found Temporal Arteritis. Scary! It can cause blindness.
Of course, this happens just before the New Year's holiday and the doctors I normally see locally are off. I managed to get in to see the PA of one of them. She confirmed Temporal Arteritis. She said I would have to go on strong dose of prednisone for a while. I explained I cannot afford to weaken my immune system. The doctor she works under doesn't believe I have Lyme but that I have Protomyxoa Rheumatica. So, I approached it from that angle. she understood that but said I could not risk losing my eyesight. So, how could I argue with that? A biopsy of the affected artery is usually done for a more definitive diagnosis but she said she did not want to put me through that. I am not sure where I would have needed to go.
I see the LLMD again 1/5 but I am very concerned about all of this. I know that steroids are not good when you have Lyme. But right now I am more worried about my eyesight. I searched to see if there was any link of Temporal Arteritis to Lyme and found a couple short articles that said that when the artery is biopsied sometimes the Lyme spirochete is found.
The LLMD is off until Monday so I can't even call and ask questions. Does anyone have any knowledge or suggestions regarding this condition and in particular as it relates to Lyme?
About a week ago I started having a headache on the right side which then became a headache across both my eyes. I started having aches that traveled to different parts of my body-knee, ankle, elbow, tops of feet, lower leg, cheek, jaw. I noticed some tenderness in my right temple area and a little swelling. After searching my symptoms on the internet, if I found Temporal Arteritis. Scary! It can cause blindness.
Of course, this happens just before the New Year's holiday and the doctors I normally see locally are off. I managed to get in to see the PA of one of them. She confirmed Temporal Arteritis. She said I would have to go on strong dose of prednisone for a while. I explained I cannot afford to weaken my immune system. The doctor she works under doesn't believe I have Lyme but that I have Protomyxoa Rheumatica. So, I approached it from that angle. she understood that but said I could not risk losing my eyesight. So, how could I argue with that? A biopsy of the affected artery is usually done for a more definitive diagnosis but she said she did not want to put me through that. I am not sure where I would have needed to go.
I see the LLMD again 1/5 but I am very concerned about all of this. I know that steroids are not good when you have Lyme. But right now I am more worried about my eyesight. I searched to see if there was any link of Temporal Arteritis to Lyme and found a couple short articles that said that when the artery is biopsied sometimes the Lyme spirochete is found.
The LLMD is off until Monday so I can't even call and ask questions. Does anyone have any knowledge or suggestions regarding this condition and in particular as it relates to Lyme?
About your comment above: "That sounds like something I might want to try since I can get it online without RX."
Keep in mind that whether medicine is prescription or not, they are all chemicals, and they can interact even if they seem harmless. Pls consider getting your doc's okay to take any meds, including those that don't require a prescription from a doc! Just a phone call to the doc's office asking the staff to ask the doc if it is okay to take [X] herb or probiotic or whatever could help avoid possible problems. Take care. ;)
Keep in mind that whether medicine is prescription or not, they are all chemicals, and they can interact even if they seem harmless. Pls consider getting your doc's okay to take any meds, including those that don't require a prescription from a doc! Just a phone call to the doc's office asking the staff to ask the doc if it is okay to take [X] herb or probiotic or whatever could help avoid possible problems. Take care. ;)
He said it is not Temporal Arteritis. The artery that would be involved in that is not swollen. That is a relief. He is sure all the other symptoms were herxes. We will stay the course with the treatment I am on until next follow-up appointment in three months.
1 Comments
You might want to try a biomat. And warm compresses alternating with cold pack to get the circulation going and I used tea tree oil mized with peppermint oil on the swollen temple
Hi. My LLMD does not have me on pinella, just probiotics to help prevent the possible adverse effects of the abx. That sounds like something I might want to try since I can get it online without RX. Thanks so much for the suggestion. Could you send me a message letting me know what brand you use and where you get it?
I started doing the hot soaks with Epsom salt and drinking water with lemon. I read that doing that helps to detoxify. Also, hot water with apple cider vinegar. I throw in a little turmeric because that is anti-inflammatory. Not very tasty but the way I was feeling I didn't care. I was highly motivated!! I also found a green vegetable powder that is supposed to boost immune system and also help detox. I put that in my protein shake.
We think I have been infected with Lyme for a long time also. I used to wonder how I would know if I was having a herx. Boy, that was an experience I won't soon forget. :) When it first started I suspected a herx but when it continued on I wanted to make certain it wasn't something else. That's when the PA scared me half out of my mind.
The travelling pains were the worst. They felt like a toothache. They have subsided and the weird headache is almost all gone as well. It looks my LLMD knew what he was talking about. I am glad I talked with him and trusted what he was saying. What a relief! That other condition would have been pretty bad. I am starting to wonder if that little spot that feels a tad swollen is just my normal anatomy--maybe a blood vessel that is just closer to the surface or more prominent. I will have the LLMD check it out when I see him on Tuesday.
Thanks again.
I started doing the hot soaks with Epsom salt and drinking water with lemon. I read that doing that helps to detoxify. Also, hot water with apple cider vinegar. I throw in a little turmeric because that is anti-inflammatory. Not very tasty but the way I was feeling I didn't care. I was highly motivated!! I also found a green vegetable powder that is supposed to boost immune system and also help detox. I put that in my protein shake.
We think I have been infected with Lyme for a long time also. I used to wonder how I would know if I was having a herx. Boy, that was an experience I won't soon forget. :) When it first started I suspected a herx but when it continued on I wanted to make certain it wasn't something else. That's when the PA scared me half out of my mind.
The travelling pains were the worst. They felt like a toothache. They have subsided and the weird headache is almost all gone as well. It looks my LLMD knew what he was talking about. I am glad I talked with him and trusted what he was saying. What a relief! That other condition would have been pretty bad. I am starting to wonder if that little spot that feels a tad swollen is just my normal anatomy--maybe a blood vessel that is just closer to the surface or more prominent. I will have the LLMD check it out when I see him on Tuesday.
Thanks again.
1 Comments
Did the LLMD have any comments on that swollen feeling you've been having?
Does your doc have you on pinella along with the abx? It's not an Rx, you can get it online or at a shop with a really good supplement stock. It helps the body clear the toxins from the nervous system (commonly used in conjunction with burbur which does the same for the muscles/joints). It's a liquid, you put 10 drops in about 4 oz of water, wait a minute, and drink. Burbur and pinella have helped me with managing herx reactions and pain since I started treatment. I was using it as needed for herxing; last appt my doc noticed I have swelling in my ankles and feet and thinks it's a buildup of toxins so I'm on burbur and pinella minimum 4 times /day for a while.
Your travelling pain sounds very much like a herx reaction. I have the same thing. My jaw pain/tenderness comes very occasionally, fortunately. My doc says as the various colonies of bacteria are uncovered and killed, the toxins they release cause the pain and inflammation. I've been infected long enough that the little buggers are basically everywhere. The body has to clear all the toxins . When it can't clear them fast enough, we get the escalating and sometimes overwhelming herxing.
I'm sorry to hear how bad your reactions are now, and I hope the temple swelling turns out to be a herx itself.
Hang in there and keep fighting!
Your travelling pain sounds very much like a herx reaction. I have the same thing. My jaw pain/tenderness comes very occasionally, fortunately. My doc says as the various colonies of bacteria are uncovered and killed, the toxins they release cause the pain and inflammation. I've been infected long enough that the little buggers are basically everywhere. The body has to clear all the toxins . When it can't clear them fast enough, we get the escalating and sometimes overwhelming herxing.
I'm sorry to hear how bad your reactions are now, and I hope the temple swelling turns out to be a herx itself.
Hang in there and keep fighting!
Hi Jackie,
I thought of the on-call after my post. I think I am just on overload right now. My symptoms have persisted for about 6 days. My LLMD did call me and he believes I am having Herxheimer reactions to the treatment since I have been on the antibiotics about 6 weeks now rather than Temporal Arteritis. He told me not to take the prednisone. I really hope he is right. If he is wrong, this could be turn out really badly. I definitely don't want to lose my eyesight. I am really concerned about this.
I thought of the on-call after my post. I think I am just on overload right now. My symptoms have persisted for about 6 days. My LLMD did call me and he believes I am having Herxheimer reactions to the treatment since I have been on the antibiotics about 6 weeks now rather than Temporal Arteritis. He told me not to take the prednisone. I really hope he is right. If he is wrong, this could be turn out really badly. I definitely don't want to lose my eyesight. I am really concerned about this.
1 Comments
Here's an idea: talk to your doc about seeing an ophthalmologist (which is an MD specializing in eyes). Back when I was first diagnosed with Lyme, I was surprised to find that, compared to other kinds of MDs, ophthalmologists are often *very* wise and up-to-date when it comes to patients with Lyme.
Greetings -- sorry you're ailing -- your doc almost certainly can be contacted 24/7 through his/her call center -- virtually all docs are reachable through this way. If they themselves are not available because it is their day off, your doc will an arrangement with other docs who 'takes call' so your doc can have some down time. Sometimes the doc 'on call' is in your own doc's practice, or if in a separate practice, the 'on call' doc is sufficiently compatible with your own doc's views that the 'on call' doc will know how to proceed. I would call your doc's office, and you'll likely get an answering service trained to reach your doc or will route you to the stand-in doc. Docs who take call for each other are careful to cultivate a close relationship with their 'on call' counterparts, and if there's any doubt in the mind of the 'on call' doc, s/he will almost certainly make a separate call to your own doc to confer, just so things keep moving smoothly for you.
This sounds complicated, but it's not: it's just the best way for patients to get personal advice and for the docs to get a day off once in a while.
Rather than go to another doc who knows nothing about your current situation and (esp. given that it's Lyme you have), sticking with your current doc (and his/her 'on call' counterparts) is definitely what I would do. I would have the same view that you do about steroids ... but I'm not surprised you got that reaction: either a doc understands Lyme, or the doc doesn't.
So call your Lyme doc's office, which will route you to the call service, and take it from there. If that doesn't work (tho I can't imagine it won't), let us know and we'll brainstorm some more. 'Be not afraid.'
This sounds complicated, but it's not: it's just the best way for patients to get personal advice and for the docs to get a day off once in a while.
Rather than go to another doc who knows nothing about your current situation and (esp. given that it's Lyme you have), sticking with your current doc (and his/her 'on call' counterparts) is definitely what I would do. I would have the same view that you do about steroids ... but I'm not surprised you got that reaction: either a doc understands Lyme, or the doc doesn't.
So call your Lyme doc's office, which will route you to the call service, and take it from there. If that doesn't work (tho I can't imagine it won't), let us know and we'll brainstorm some more. 'Be not afraid.'
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
