posted
I have a horrible case of cold sores on my lip for days now and it is so swollen that my cheek is now numb. MY gp gave me oral valtrex but said to take the steroid pack since he thinks it is turnign into another case of bells palsy on me!
I am so scared. Bells palsy in 1979 on the other side and a horrible surgery done for it left me with permanenet vertigo and hearing loss. I do not knwo what to do now. I never ever want bells palsy again. I was left with only some movement in my right side ever since then and now the left?
I heard steriod are a problem with lyme, but I need to take the chance rather than getting bells palsy again. That would just kill me totally. I am so fed up with this damn illness already. Once issue after another.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Well, what does your LLMD say about this? You need the advice of an expert LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
[this is not an expert from any author's work but this poster's note below]
Low Dose Cortef to help adrenal repair:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Search: "Bell's Palsy" neuroborreliosis
Often, Bell's Palsy IS lyme. Steroids can make lyme (and Bell's Palsy, worse). When so, TREAT lyme and the Bell's Palsy will often get better.
Again, you cannot treat lyme with a GP. You need to talk to your LLMD about steroids. Make that call now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Why not try l lysine instead? I know someone with the genital type of herpes, and he swears by it.
Now yours is caused by a different type of herpes virus since you're dealing with cold sores in the mouth, but give it a try...bet it helps some...seriously...
Also, I currently have a mega sinus/upper respiratory infection, and I noticed blisters inside my mouth with this. Ceftin is clearing them up, so maybe Lyme is the real culprit and not any virus at all?
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- elizza has a good suggestion. Be sure to read back over the other suggestions posted for you yesterday at your thread. There are specifics to the HSV-1 and L-Lysine and Monolaurin, etc.: --------------
Lip sores -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Call your LLMD. Don't take the steroids without his permission. Your GP doesn't know squat about this illness. If he did he would have referred you to a good lyme doctor years ago.
Bell's palsy is coming from the Lyme disease. Steroids are the worse thing you can take right now.
That bells palsy you had years ago may very well have been Lyme disease not a virus.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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quote:Originally posted by Abxnomore: Call your LLMD. Don't take the steroids without his permission. Your GP doesn't know squat about this illness. If he did he would have referred you to a good lyme doctor years ago.
Bell's palsy is coming from the Lyme disease. Steroids are the worst thing you can take right now.
That bells palsy you had years ago may very well have been Lyme disease not a virus.
amen
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I didnt fill the steroid pack. Thank you for your advice.
I told him that I was sure steroids were a problem in lyme so he said I could double check with llmd and he would love to speak to hiim about lyme. He is very interested in it and wants me to send him the DVD underourskin to learn more about it. I went through such a horrible time losing my face at the age of 19 from bells palsy and major surgery with it. I never got my face back and it put such a huge damper on my life. I am always self conscious over it. The thought of losing the other side is my worst nightmare ever.
I did take the valtrex and lysine that he gave me but majoy stomach pain tonight. I think all these things in my belly are just way too much to handle. I foresee another night of stomach pain coming my way tonight. Keep your fingers crossed I can get some sleep.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I agree that the Bells Palsy is most likely from lyme. It is a very common symptom and should go away with proper lyme treatment.
Are you taking the new meds with plenty of food? That hopefully will help.
Hope you are able to sleep!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Agreed. The ABX and treatment will take care of the Bell's Palsy, however, you should let you LLMD's office know you have developed it since beginning treatment. He may need to adjust your meds.
Don't even think of surgery; it's not warranted, perhaps, it never was. Menieres is very common, too, with Lyme. It's coming from the spirochetes getting at your cranial nerves.
Once they get calmed down the Bell's palsy will go away. Yes, it very very common with Lyme and being on the ABX often will bring out these things that have been there in the latent form.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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onbam
Unregistered
posted
Bell's Palsy is so often from Lyme that even the IDSA can't deny the association. It's one of the few neurologic symptoms mentioned in their guidelines.
posted
Is it possible for the valtrex anti viral to cause some type of herx? When i took it a few hours before my abx I was ok until the abx.
I have major pain from head to toe now. Stabbing pains that jump all over and even my thigh muscles hurt to walk. I had such a horrible night with the whole thing and today I feel like i was hit by a bus..cant walk with the pains again?
I cant imagine a herx from an anti viral so what is happening?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
If you kill any kind of pathogen off in large numbers, you can herx. Even with candida and I believe you are on diflucan?
It just sounds to me as thou you are suffering from classic lyme symptoms. Not pleasant, I understand. Read a symptom list again. There are so many symptoms it will refresh your memory.
I'm not sure you needed to throw Valtrex into the mix, especially without consulting your LLMD.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Abx. I stopped the diflucan after a few days. I was feeling much better and did not want to stay on it. Have no yeast syptoms any longer..
then I got this wonderful cold sore things and numbness so they gave me valtrex as anti viral. I took the third dose this afternoon and the pain in my glands is stopping, but the rest of my body is wrecking havoc. I never laid down three times in one day in my entire life. Hubby is getting scared at this point.
I got a call from some company today saying that my doctor ordered infusion therapy and they will call me when it is approved to set it up? I thought the PA said I could not get Iv therapy. THis is strange? Maybe they are trying a bit harder for it?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Trust me most of us never took naps before this illness. If you conduct your life like you did before getting ill, you will be hindering your recovery. Your body needs rest. Too bad for hubby. Do you want to get better?
Terrific news about the possible IV. I guess they are working on trying to get it approved for you. Fingers crossed that all goes OK.
I think given your symptoms, you will benefit greatly from it but don't expect to be up and running once you do it. It should move you up a few notches but you have long way to go. This is a monster of an illness.
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