posted
I am going to see a LLMD this week. Please advise me of what important info to ask?
Posts: 78 | From Pa | Registered: May 2015
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Keebler
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posted
- Do you have to travel?
Even if a reasonable drive, try to have a friend drive (but one is not going to say anything judgmental along the way or be nosy about the appt.),
be mindful to try to avoid exhaust fumes and busy traffic en route.
Ask about any nice SERENE park near the office where you might gather yourself before & after - even just a bench by a pond sort of thing.
This matters so much more than you might think, I think. Unless it's just too hot, of course. Or maybe a TEA ROOM or quiet café - or art gallery or museum (and many have wheelchairs to use while there).
I think it helps to round out your day so there is more to think about after you get home, some enjoyment.
Are you sensitive to scents (most LLMD offices should be okay but do ask & note that the restrooms of the actual bldg. can have very smelly soap, etc.)
sensitive to fluorescent lights, mini-blinds that create a stripe effect (take a battery powered camp lantern or ask if they have one).
- or to certain office sounds?
Will you need to lie down while you wait?
If you have certain needs, be sure to call in advance about how they may be managed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
That post is great thanks for link Keebler. I thankfully do not have any extreme symptoms. I am back to my regular life style. Meaning feeling myself, working, exercising I am however scared because I had such a bad reaction on doxy that I really do not want to take it again. It took about 3 weeks for the side effects of the doxy to subside.
[ 07-04-2015, 09:23 PM: Message edited by: bis ]
Posts: 78 | From Pa | Registered: May 2015
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Keebler
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posted
- There are other things beside doxycycline - yet there are ways to make it easier to tolerate. A good LLMD will have options for you. Treatment plans are to be designed for the individual.
Also be sure about what a herx is and how to manage or even avoid. Try to determine if your reaction might have been a herx or it's just not your match.
posted
I have been reading about herxing and can't actually get a clear idea the difference between the herx and an allergic reaction.
I know that my pulse rate doubled, I had rashes all over my body, intense head pressure, muscle tightness all over my body, could barely eat, or sleep.
I also wonder if some of my rection to the doxy was caused by the prednisone that I was on the week I started the doxy.
[ 07-05-2015, 07:28 AM: Message edited by: bis ]
Posts: 78 | From Pa | Registered: May 2015
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quote:Originally posted by bis: I also wonder if some of my rection to the doxy was caused by the prednisone that I was on the week I started the doxy.
- Oh YIKES!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
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posted
bis, a herx is a worsening of your lyme symptoms or even new lyme symptoms. So, it sounds like, for you right now, there is no way to know what symptoms you will have when you herx. After you have had a few herxes, then you will know.
An allergic reaction is usually hives, a rash, itching, swelling of lips, throat, eyes, etc.
When you have lyme, you can have allergic-like reactions to many medications. They are not real allergies, but they are your immune system over-reacting.
So, you are just going to have to find medications that your body will not react to. Tell the doc about the doxy and say you don't want to try that anymore.
If you are put on high-dose antibiotics for lyme, you can expect a herx after 2-3 days. Of course, there are exceptions.
The quote below says this:
"Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed." (p. 17 of Burrascano)
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
Prednisone makes people unable to sleep big time. It wires you up! So, it could have accounted for fast pulse and inability to eat also.
I hate prednisone for all these reasons.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I took a prednisone taper for 4 days before the doxy and then tapered more quickly when I started the doxy...so for the first 3 days I was on doxy I also took prednisone.
Posts: 78 | From Pa | Registered: May 2015
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Keebler
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- The effects of steroids can last in the body for many months. Good thing you are off of it now but do tell your LLMD about prednisone FIRST thing. Also about your experience with doxy.
You may have seen this by now but if not, just be sure to avoid steroids from here on out. Details:
Topic: what do STEROIDS actually do to those with lyme? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Herxing can last for days but then also come and go and more come on with a change in treatment.
It's not going to be a walk in the park even if not herxing, still, there are certainly ways to prepare & manage. Some feel better with treatment, some don't for a while or even for long periods of time.
Even if not a herx, though, the infection(s) can make one feel rough even with treatment.
Nutrients & good self care usually help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
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posted
The length of the herx depends on the person. If you genetically have trouble detoxifying, you can herx all the time until you learn how to detoxify yourself. That requires that you take various detox agents.
For me, my herx lasted about 7 days. The first 4 were sort of bad and the last 3 were half bad. It was nothing to write home about.
The herxes every 28 days should get more and more mild as long as you are on good treatment.
So, the herx could end up being one day of feeling lousy or just one day of low energy, etc.
My doc had me drink fresh lemons squeezed into water. He said to eat 4 lemons per day. I never got up to 4. But, because this detoxes you, I believe I never had bad herxes. I made lemon water my ONLY drink for the entire 13 months that I treated lyme and coinfections.
You must drink a lot of water to detoxify. And, if the herx is bad, you can take some AlkaSeltzer Gold with lemon squeezed into it. (Don't use bottled lemon juice.)
Buy some when you pick up your medications. This way, you will have it. Or, you can use baking soda in water with lemon.
The water flushes out the body and the lemons are a natural cleanser of the body.
If your herx is severe, you stop the meds for a day or 2 until your body catches up with the detoxifying and then you resume.
See page 17 of Burrascano which says this:
"With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed. For unknown reasons, the worst occurs at the fourth week of treatment. Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient. In those with long-standing highly symptomatic disease who are on I.V. therapy, the week-four flare can be very severe, similar to a serum sickness reaction, and be associated with transient leucopenia and/or elevations in liver enzymes. If this happens, decrease the dose temporarily, or interrupt treatment for several days, then resume with a lower dose."
I suggest you read all of Burrascano and underline all of the things the patient is required to do and be sure you do them. This gives you the best chance of going through therapy without major problems.
You can research herxing in Burrascano. Get the document on your screen. Then use the "find" function (Control+F) and type in "herx" in the search box. Then, you will be taken to each place in the document where this word appears. Read each paragraph.
You can search any subject this way and answer many of your own questions.
You can look up medications this way, but you must be using the generic name of the med. YOu can get that off the Internet.
If you are put on flagyl (metronidazole), as you will see in Burrascano, that causes the most severe herxes. I was put on flagyl and high-dose amoxi and still my herx was no big deal.
Everyone is different. I was afraid, but it turned out not to be so bad. My babs flares were a big deal. I got them about 4 months into treatment when my doc went after babs.
But, by then, I took everything as it came. Each time the doc changes your meds, expect to feel worse because a new med has a different killing profile and so will begin to kill germs that the last med was not able to kill.
So, some people describe this as 2 steps forward and one step back. The more you understand by studying Burrascano, the easier it will be not to be upset or worried as you go through treatment. You can take everything as par for the course and just determine to make it through to the end.
Be a very obedient patient. And, be an educated patient. That is my advice. It worked for me.
And, compare your treatment plan to what you see in Burrascano so that you will know if your doctor is good or not.
The folks around Philly have told me for years that we have better doctors in Maryland. So, be willing to switch doctors if you have to. I had a total of 3.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Ok, I guess I should except the fact I am going to lose my job over this. I already had to take so much time off. Posts: 78 | From Pa | Registered: May 2015
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posted
I just wrote a reply on your other thread and it disappeared.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you should accept the "fact I am going to lose my job over this. I already had to take so much time off"
Yet, above you say that "thankfully do not have any extreme symptoms. I am back to my regular life style."
So, then, you are starting in a much better place than most. You may fell better on treatment, worse or somewhere in between.
The key about liver / kidney support and lifestyle directives is so that you can lead the best life you can DURING treatment.
But it will take some planning. Nap time if your body needs it matters but that's often possible even at many jobs (on your own time out, though).
There are ways to arrange work, home / food requirements, to simplify. Maybe have someone shop for you and do certain tasks, etc.
Many have worked during treatment. The idea is to plan with your doctor how this can be the case for you since you are in a fairly good place to start.
You not share anything specifics your diagnosis with work but you can declare a disability and ask for certain accommodations. Find out the best way to do this before talking with your HR staff or your boss. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have told my work everything that is going on. They are very supportive. I just can't take how ever many months treatment is off. I work as a bartender. My nights are very busy/long. I also tend to a toddler durning the day without any support. I had muscle pain/spasms on right side from back around hip into pelvic down inside thigh into my calf & a circle rash right on top of muscle I though I pulled (and more red rashes spread) Before I took the meds--- I was working up untill I started the doxy. That's when all these horrible side effect (or I guess herx) happened. I had small red splotch rashes all over and I could not sleep or eat, (even went to ER)...untill three weeks after the I was off. I had bad headaches and blurry vision. I felt like my head was swollen.
I then started feeling better each day. The past 2 weeks I am back to work and I have been myself.
I also should meantion that durning the last few months I completed ended breastfeeding which I am sure lead to some hormonal changes in my body.
Throughout this whole experience I never had fever, swollen glands, fatigue or joint pain. Maybe I had Lyme for awhile and never knew it? I know everyone has different sets of symptoms.
[ 07-05-2015, 07:37 AM: Message edited by: bis ]
Posts: 78 | From Pa | Registered: May 2015
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posted
Lymetoo -sorry I took it down. I figuered I was getting some answers on this thread. I also didn't know how sensitive of a subject it is. I did not want to (bring up the past) (open wounds)or offend anyone for asking.
[ 07-04-2015, 09:43 PM: Message edited by: bis ]
Posts: 78 | From Pa | Registered: May 2015
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