My mother was clinicly diagnosed (western blot was negative) with Lymes a couple months ago. Shortly after she started oral antibiotics. Shortly after that she thought she was on her death bed so we stopped the antibiotics. 3 weeks ago we started them again. 4 days ago she started having suicidal thoughts so we stopped the antibiotics again. These last 3 days have been progressively worse. When she wakes up the morning she is at her best. Usually she talks about how confused she was the day before. Then things go from bad to worse throughout the day. By evening she has completely lost touch with reality. When you talk to her she doesnt respond. She can hear you but its almost like she's choosing to ignore you. Its nearly impossible to get her to do anything. I felt like if we left her standing she would stand until she fell over. Yesterday evening when I finally did get her to talk to me she told me she was in hell. I asked her if she meant the metaphorical one and she said 'no the real one'. Later that evening she spontaneously said 'you mean this really isnt a dream.' This morning she seems back to reality and is explaining how she really thought she was in hell, at that time. Can Lyme symptoms or herxing be this severe? We talked to the doctor who has been treating her this morning and he said he hasnt seen a Lyme patient with symptoms this severe so now he's questioning whether she has lymes. Please help.
Posted by nefferdun (Member # 20157) on :
Since getting lyme, I can't read long paragraphs so I am breaking this down so we can all read it better.
My mother was clinicly diagnosed (western blot was negative) with Lymes a couple months ago. Shortly after she started oral antibiotics. Shortly after that she thought she was on her death bed so we stopped the antibiotics.
3 weeks ago we started them again. 4 days ago she started having suicidal thoughts so we stopped the antibiotics again. These last 3 days have been progressively worse.
When she wakes up the morning she is at her best. Usually she talks about how confused she was the day before. Then things go from bad to worse throughout the day. By evening she has completely lost touch with reality.
When you talk to her she doesnt respond. She can hear you but its almost like she's choosing to ignore you. Its nearly impossible to get her to do anything. I felt like if we left her standing she would stand until she fell over.
Yesterday evening when I finally did get her to talk to me she told me she was in hell. I asked her if she meant the metaphorical one and she said 'no the real one'.
Later that evening she spontaneously said 'you mean this really isnt a dream.' This morning she seems back to reality and is explaining how she really thought she was in hell, at that time.
Can Lyme symptoms or herxing be this severe? We talked to the doctor who has been treating her this morning and he said he hasnt seen a Lyme patient with symptoms this severe so now he's questioning whether she has lymes. Please help.
Posted by Lymetoo (Member # 743) on :
Can Lyme symptoms or herxing be this severe?
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YES!!! Does she have a Lyme specialist? She needs to be tested for possible coinfections, especially bartonella.
What antibiotic is she taking? Dosage?
Posted by nefferdun (Member # 20157) on :
I am sorry your mother is so sick. It must be very frightening. You need to get her to another doctor if this one has not seen a lyme patient with symptoms so severe. It is very common.
Herxing always makes the symptoms much worse. It is one way of telling if the medication is working. So for the doctor to expect her to not get worse is ignorant. However, it is very rare for a person to have only one pathogen and it could be another infection that is affecting her mind.
Treating one infection will often cause another one to emerge and become stronger. Like 99% of us, your mother probably has multiple infections, not just borellia which is the spirochette that causes lyme disease.
Depression and severe cognitive problems can be caused from babesia. The drugs for borellia do not affect babesia. Babesia is a protozoa similar to malaria and needs anti-malarial drugs.
Some of the symptoms for babesia are hot flashing, sweating, depression, dizziness, anxiety, pain/cramps in the thighs and buttocks, extreme fatigue, breathlessness, air hunger, headaches, inability to concentrate or remember and the feeling of being disconnected from reality. Ask her if she feels like she is walking off a mountain top into the clouds".
Bartonella is very neurological. It causes a feeling of depersonalization, irritation/ rage, lack of motivation, anxiety, pain in the feet and shins, muscle twitching and skin changes. It also requires different drugs other than what is usually used to treat borellia.
With borellia there are usually flares of symptoms about every 28 days and the symptoms migrate which makes diagnosis so difficult. These flares become very obvious. Borellia can cause emotional and cognitive problems too.
Symptoms overlaps and it can be hard to determine what is causing what. That is why it takes a skilled doctor to determine how to treat. You also have to be very proactive yourself, carefully observing and monitoring treatment. If ever a doctor seems to be apathetic or off base, seek another opinion.
I hope you can find help for her.
Posted by InNeedOfSeriousHope (Member # 35924) on :
The following is her medication history..
On Nov 22nd she started: Ceftn - 500MG twice a day Biaxin - 500MG twice a day Plaqanil - 200MG twice a day
On Nov 23th she had a panic attack so the doctor stopped the Biaxin.
On Nov 29th she started: Cytomel - 5MCG twice a day Levothyroxine - 100MCG once a day
On Jan 4th she stopped the Cytomel
On Dec 5th she thought she was on her death bed so she stopped the Ceftn and Plaqunil.
On Dec 12th she started Prozac
BREAK FROM ANTIBIOTICS When she started again..
On Dec 29th she started Ceftn - 500MG twice a day On Jen 5th she started Biaxin - 500MG twice a day On Jan 12th she started Plaqanil - 200MG twice a day
After starting the Plaqanil she started to become very confused so the doctor said to stop that. She stopped the Plaqanil on the 13th so she only took Plaquanil for two days.
We continued to take the antibiotics until Jan 20th. Thats when things started to get really bad for her mentally. We called the doctor and he told us to stop the antibiotics.
She has also been taking Ambien to sleep. 10MG at 11pm and if she would wake up she would take another 5MG (up to 20MG total in a night if she needed it). The last 3 nights she has been sleeping without it.
If one has a high bacterial load or difficulty getting rid of the toxins from die-off one can become very ill.
Your mom needs a doctor who knows what to do to help her. If her doctor has never seen a lyme patient herx like that then she needs a different doc.
Stopping treatment is not the answer because the infection just gets worse over time.
You need to get your mom to an ILADS trained lyme doctor.
to find a doctor: ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors who are closest to you. http://tinyurl.com/2feb48x
InNeed - I would not take a homeopathic nosode like the deseret biologicals when starting treatment for lyme disease with abx.
Many ppl need to start out slowly even if just on abx. Nosodes can cause significant symptoms in my experience.
Is her doctor having her do anything for detox?
Terry
Posted by BoxerMom (Member # 25251) on :
These dosages may be too high for her. I took pediatric doses for my first 1.5 years of treatment.
The optimal combinations and dosages requires some trial and error, and can still be a bit of a moving target, but, in general, the lowest dose that leads to herxing or consistent improvement is appropriate.
I could never have handled that much antibiotic so early in treatment. I would have herxed too hard. It really does feel like hell.
My vote would be to find a doc who understands this very basic concept.
Posted by dal123 (Member # 6313) on :
She started off on too many abx, she should take only one ie start on 500 mg Ceftin once a day ramp up to the full daily does, then add in the second abx, NO nosodes for now as that series therapy will cause additional herxes that is harder on the body, that stuff is really for those who cannot take abx at all.
Posted by lyme in Putnam (Member # 11561) on :
Maybe it was a reaction to too much at once. I hope she's better soon.
Posted by RC1 (Member # 31923) on :
Oh boy, I can relate. That is what happened to me in my first month of treatment. Those were my words exactly "I am in hell".
I found out since then that I don't detox well, I got though it but it was hard. I didn't back off from treatment, I probably should have, but I wanted to get rid of it so bad.
These days I am feeling well, I also found out that I have problems from mold which is very common with the people that don't detox well, and the mold played a part in my illness.
Posted by Lymetoo (Member # 743) on :
WAY too much so soon in treatment .. esp for someone who is elderly (?)
I agree with dal123.. try ONE of those at 500mg a day .. then work up to 2 if she can tolerate that much.
Posted by InNeedOfSeriousHope (Member # 35924) on :
Thank you all for the support. It's really helped at least me going. At times I felt like maybe I was going down the wrong track and started to question "what if she didnt have lymes". But your support is helping. She is 57 btw. Today she is at least back to reality. There is still a lot of confusion and she still says eveyday is worse then the last.
Posted by seibertneurolyme (Member # 6416) on :
I agree that she probably started too many meds at too high a dose all at once.
But there is one thing missing from the discussion that also needs to be considered. The thyroid medicine. I think you said she stopped the cytomel, but if the other thyroid med is also a new med that could be playing into the symptoms.
Plus the ambien -- hubby tried that and it gave him temporary amnesia. I know you said she is better in the mornings so maybe that is not a problem med.
One of the most important rules in treating lyme and tickborne illnesses is to only make one change at a time. Yes it can be slow and frustrating, but changing multiple meds and/or supplements all at once just adds more confusion. You don't know what is helping or if you have side effects you don't know what is causing them.
So I would back up a little and go low and slow. And please keep your doc informed of any new or worsening symptoms.
It looks like you are keeping good notes and that is very important.
Good luck.
Bea Seibert
Posted by merrygirl (Member # 12041) on :
Prozac can CAUSE suicudal thoughts by itself in some people.
But a true herx can make you want to hurt yourself.
She prob needs to go to er to be kept safe.
Posted by derk diggler (Member # 31903) on :
**** this disease i hate to hear of an older woman goin through that, scares me cuz i no thats how im gonna feel when i start to treat
Posted by InNeedOfSeriousHope (Member # 35924) on :
Here is some good news. After being off the meds since Fri she has returned to her usual self. Its unfortunate that her usual self is still lyme infected and full of pain and ultra sensitivity. She still doesn't think that she is going to make it but she has always been a negative person so lyme just seems to have magnified that. At least she has been making jokes and even did some laughing today. We are going to start back up on the antibiotics in the next day or two. This time a little slower.
Posted by Lymetoo (Member # 743) on :
WHEW!! I really suspected that going too fast was the problem. Treatment is really really rough.
My LLMD always said, "Slow and steady wins the race." He was right!
keep us posted.. I'm so glad she is doing better.
Posted by InNeedOfSeriousHope (Member # 35924) on :
We started back up on the antibiotics. This time just the Biaxin, as the Doctor suggested we try to take just that for a month before adding anything else. That was on Sat the 28th, since then her anxiety has been building. I'm afraid we are getting close to panic attacks if it increases anymore. I'm wondering if there is anything more we could be doing to manage this anxiety.
Posted by Keebler (Member # 12673) on :
- She may need an increase in her magnesium dose, or in her Fish oil. Both help decrease anxiety that is caused by lyme.
Holy Basil (Tulsi) is excellent to reduce anxiety and help calm adrenal exhaustion that goes with lyme.
Also be sure she avoids even a trace of MSG and aspartame as they are just as neuro toxic as lyme. Google for all the names they both hide under.
What kind of LIVER SUPPORT or "detox" support is she doing?
Milk Thistle is the most common liver support but there are others, too.
Adrenal support is also very important.
My guess is that her doctor is not aware of the kind of support most lyme patients MUST have in order to tolerate treatment.
MOST ILADS-educated LLMD know about support methods.
Is she seeing an ILADS-minded truly lyme literate doctor?
You might also consider a LL ND naturopathic doctor for the support methods if her doctor is not educated in that part of it. -
Posted by Keebler (Member # 12673) on :
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Dogsandcats (Member # 28544) on :
There is not much I can add to what everyone else has said except you are an exception daughter and person to be helping your mom.
Make sure you take care of yourself too.....
Posted by TerryK (Member # 8552) on :
InNeed Wrote:
I'm wondering if there is anything more we could be doing to manage this anxiety.
Yes. Detox support is needed. A herxheimer reaction can be fatal. I think it is relatively rare but I am convinced that my sister died as a result of massive die off due to antibiotics.
When this was going on she was out of her mind and unable to take in any information or do anything for herself. No one would take her need for detox support seriously. After 3 tries with abx they took her off and a few days later she died. I think she had massive inflammation and a cytokine storm.
Please get a doctor who understands the issues around ppl who have lyme and get really sick on abx.
I could not take abx before I found my LLMD. My LLMD checked all the genetic factors that could affect my ability to detox and as it turns out I have some serious issues as did my sister or at least her identical twin does so we assume she did too.
There are prescription meds for anxiety so perhaps contact her doctor. I personally have good results with GABA (an over the counter supplement) but there are some cautions so you will want to research it for her. There is also an amino acid that can be helpful called l-theanine and there are many other over the counter supplements that can help.
As Keebler mentioned, an ND would be most helpful to help manage symptoms since supplements are not necessarily benign.