Stuttering new symptom

I'm new here, I've been reading this site almost daily and every website I can find trying to learn everything I can about this crazy disease. First time posting so I'm sorry this is very long.

My daughter who is 19 who still lives at home started having symptoms in July 2015. She went undiagnosed for almost 2 months while the quack doctor we were seeing just kept sending us on wild goose chases. When I finally asked him to test her for Lyme it was Sept., he said that it isn't Lyme because if it was she would be septic by now. So he laughed at me and said he would test her but it isn't Lyme. 10 days later when the test results came back with a positive band 41 he put her on 100 mg doxycycline twice daily for 14 days and said if she gets better then it's Lyme. 2 days later at her follow up appointment he walked in the door and said it isn't Lyme. He kept insisting it was MS even though she wasn't showing MS symptoms and she did improve with doxy. He never did any type of neurologic exam to even begin to say why he thought it was MS, he was just grasping at anything. We left his office and immediately started looking for an LLMD. We found her LLMD and also a very supporting D.O. who is also treating several other Lyme patients in our area. Her Physical Therapist said it was not MS, she was showing no symptoms of MS and the PT actually did the neurologic exam that the MD never did. She also consulted with her mother-in-law who is an MD and her mother-in-law said that even if you only get one band on a western blot you treat for a minimum of 3 months.

July ~ Pain started in her left knee and within a week also went to her ankle and foot. Swelling in the ankle, foot and toes. Drop foot. Peroneal tendon pain at night after a day up and about and fainting episodes. On crutches couldn't tolerate anything touching her foot or leg from knee down to foot. Heal pain in left foot only. Skin was so red it was almost a dark purple at times, would get extremely red and swell when she had her foot down but while her foot was elevated the redness would lighten and some of the swelling would leave. MRI of ankle showed joint effusion. This continued on into August.

September ~ Western Blot through LabCorp positive IgG Band 41. Started on Doxy 100 mg twice daily and within 2 weeks she was able to start moving her foot, using her muscles and recovering muscle tone. Quack finally agreed to physical therapy and that is when she was finally able to regain some sort of normalcy. He also wouldn't prescribe any additional Doxy, said 14 days was enough.
New Dr. D.O, prescribed Doxy 100 mg twice a day for 30 days with 4 refills. He knew we had appointment with LLMD in another state.

October ~ after recovering from her initial leg pain and inability to bear weight and being on crutches since July, her left arm began with neuralgia (numbness, tingling, sensitivity to touch) from her elbow to her fingertips, even though she was still on doxy. Saw LLMD and dosage change to 200 mg doxy twice a day with Azithromycin 500 mg twice a day and LymPlus Transfer Factor. Arm neuralgia improved over a few weeks time. Had to stop Azithromycin because of diarrhea. Started Ceftin 500 mg twice a day.

In November a few days before the full moon she had nausea with vomiting up phlegm, with nausea continuing through Thanksgiving. She had to stop her antibiotics for a few days to allow her stomach time to calm down.

In December Her D.O. put her on Zofran to help with the nausea, which allowed her to start taking the antibiotics again. She saw her neurologist for the first time. She was put on Nortriptyline to help with nerve pain that was left over from her arm neuralgia. A few days before the full moon she had pain in her low back which affected her sciatic nerve and caused shooting pain in her right leg with severe muscle and tendon pain to the point of not being able to bear much weight.

This month January, Her LLMD had her stop the Ceftin but continue taking Doxy. After stopping Ceftin right leg pain improved but still had some low back pain.
She had to stop taking the Zofran due to it causing constipation. Constipation resolved after a few days off Zofran. Now, 2 days before the full moon she lost her ability to speak, started slurring her words. I contacted her LLMD who said to take her to our state university for evaluation. A CT scan, MRI and thyroid ultrasound was done. All results were normal. She was given 1 dose of IV Rocephin which gave her the ability to at least form words again, even though she does stutter. Constant headache although mild. Every time she tries to talk for any length of time it causes her headache to get worse. Today she had a dizzy spell which knocked her to the floor and set off a panic attack. Her spirits are high even though she is going through so much. I'm worried that the next full moon will bring something worse. I have been so hopeful up to this point but I'm loosing any hope that I had that she will get through this. I'm guessing now her panic/anxiety attacks could be part of a herx caused from the IV Rocephin.

It's so hard seeing your daughter who at such a young age with college ahead of her, have to drop her classes. Her employer has her on indefinite sick leave and will take her back as soon as her doctors release her. She had enough in savings to continue making her car payments but that won't last forever. Paying for a car that she has only been able to drive 4 times within the last 6 months.

Every time she has had a flare related to the full moon she usually recovers about a week before the next full moon with little time to enjoy feeling somewhat well before the next flare occurs.

She has been dealing with this for 6 months and as soon as we see a glimmer of hope that she is finally on the road to feeling somewhat normal this disease says not yet.

I know so many of you have been dealing with this for years.

Is there anything that I need to discuss with her LLMD this week at her appointment such as co-infection possibility, if we can get there due to the fact that we are currently snowed in and our primary vehicle is stuck in the ditch and blocking the only way in or out to our house.

Is her LLMD treating her aggressively enough? She doesn't do IV treatments and it is a 3 hour trip to her office.

Another daughter of ours who is 22, is also being treated for Lyme, she found a bulls eye on her leg in October and our LLMD began treatment without even seeing her. We did have a picture of the rash with us at the time.

I know this is long and I apologize, any advice is greatly appreciated and also I've seen some on here that is using Cowdens or Buhners Protocol. We would like to try alternative along with Antibiotic treatment but the one that is 19 has to stay away from anything mushroom related due to allergy.

I am sorry your daughter is going through this. I would want a MRI of the base of her brain to rule out a carcinoma.

Hi Sheann!
Welcome to our community!! I'm so glad you found us!

Your daughter's experience is much like my own to be honest. If you are interested, you can read it here: www.healingwell.com/community/default.aspx?f=30&m=2977364

As Antonio said, without being able to detox well, her body is filling up with toxins, this is likely why she is no longer tolerating many things she used to and why the full moon is so hard on her. I used to be just like that.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum.


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​

Thank you Traveler & Rowingmom

To rowingmom ~ no there has been no testing done yet for co-infections. I'm hoping the LLMD will test for them this week.

Traveler ~ I have seen many people saying they are making lemon water but to what ratio of lemon to water are you using? Our roads have finally been cleared and husband has gone to town to pick up some more lemons and frozen fruit to make detox smoothies using Yogi detox tea. As far as getting the bowels to move daily is it ok to use laxatives or stool softeners? I'm just wondering since adding more drugs/chemicals just makes her body have to work harder to eliminate them also.

Would you think the Chronic Tonic would be helpful to add? Can you pass along the herbs used for the tea? I've read several of your posts and how chronic tonic helped you. To my understanding it is worth a try.
If I purchase it already made How much of the chronic tonic from Misty Meadows do you use each time? As I'm just wondering how long a 16 oz. bottle would last. I have researched several of those herbs before and some of them are kind of hard to find. Since I have 2 girls so far with Lyme and the rest of our family of 6 could also possibly be infected I would need to find the most cost effect way.

Like you we also raise goats and it is because of having to go out this past spring to feed a bottle baby that I feel that is how my daughters were bitten. Or the cats could have brought the tick or fleas into the house. We had a terrible time with ticks this past spring and summer. I've lost several goats over the past few years and I've wondered if it could have been something other than the normal goat parasites.

I'll stop rambling.

Thank you so much for your reply. I'm glad you have recovered. It gives me hope again that my daughter can over come this.

So many on here can give you awesome advice and guidance but what I can offer is look into adding fermented foods, like kombucha, kefir (esp. good in smoothies) or just fermented veggies like sauerkraut and pickles. Must be fermented though, not pickled. Anything to help the gut repopulate with good flora is essential. The more I eat fermented foods the more I know this is truth.

Also, if you live out in the country maybe get some guinea hens? Their favorite food is tick.

Wow, where do I begin. I am overwhelmed with everyone who has posted. All of you who understand what she is going through.

LB, she does take a probiotic 90 billion kept refrigerated. She takes it in the afternoon during supper sometimes she can get another one in before bed if she was able to take her antibiotic early enough. Thank you for clarifying the amount of lemon and water.

Tillybear, I have made homemade sauerkraut for her, also tried broccolikraut she just won't touch the stuff. I have tried, having her to eat just a small amount on a fork trying to get her body to start craving it but, no luck. I tried that for several days. She didn't use to be so picky but since this lyme crap, well lets just say she is not very tolerant to try new things. Yes we do live in the country and we are talking about getting about 2 dozen guinea hens next spring. In the mean time we are making tick tubes and putting those out in hopes that we can put a dent in he tick population before spring.

PeteZa, her nose was hypersensitive a few days before this most recent symptom of stuttering. I was cooking beans and she had to stay in her room. I also have had those phantom smells, wonder if I need to be tested. Many times last winter I would smell something that smelled like something electrical that had overheated or maybe a hot metal smell. It would drive me crazy, it didn't matter where I would sit or what room I would be in, I have also smelled it outside on a breezy day.

So today my daughter has spent most of the day in her room lying on her bed. She doesn't want to be around people. She did decide to take a detox bath after supper so I'm hoping she will continue with the baths at least. I told her of the words of wisdom I had received on this forum and that everyone was telling her to detox, detox, detox. lol I told her I would let her read the comments.

Sheann said...
Thank you Traveler & Rowingmom

To rowingmom ~ no there has been no testing done yet for co-infections. I'm hoping the LLMD will test for them this week.

Traveler ~ I have seen many people saying they are making lemon water but to what ratio of lemon to water are you using? Our roads have finally been cleared and husband has gone to town to pick up some more lemons and frozen fruit to make detox smoothies using Yogi detox tea. As far as getting the bowels to move daily is it ok to use laxatives or stool softeners? I'm just wondering since adding more drugs/chemicals just makes her body have to work harder to eliminate them also.

Would you think the Chronic Tonic would be helpful to add? Can you pass along the herbs used for the tea? I've read several of your posts and how chronic tonic helped you. To my understanding it is worth a try.
If I purchase it already made How much of the chronic tonic from Misty Meadows do you use each time? As I'm just wondering how long a 16 oz. bottle would last. I have researched several of those herbs before and some of them are kind of hard to find. Since I have 2 girls so far with Lyme and the rest of our family of 6 could also possibly be infected I would need to find the most cost effect way.

Like you we also raise goats and it is because of having to go out this past spring to feed a bottle baby that I feel that is how my daughters were bitten. Or the cats could have brought the tick or fleas into the house. We had a terrible time with ticks this past spring and summer. I've lost several goats over the past few years and I've wondered if it could have been something other than the normal goat parasites.

I'll stop rambling.

Thank you so much for your reply. I'm glad you have recovered. It gives me hope again that my daughter can over come this.

LOL! I ramble on here all the time!!

The best cost saving plan to treat Lyme would definitely be the Chronic tonic, but you would have to buy all the herbs and mix it yourself as I did. The problem is, the Chronic tonic, while life saving for me, doesn't seem to work for many. It would be a hit and miss as to whether it would work for your family or not. If you are interested, I would be willing to share where I bought my herbs - all but the oregano which I grew myself were bought online in 2014 when I got reinfected.

As for buying it premade, I'm almost certain that I remember someone doing the math here and said that it takes 2 bottles per month per person. Maybe they would reduce the price if you bought enough each month? I'm not sure.

Since you have goats, is anyone in your family drinking/using the raw milk? I used to make raw milk kefir, raw milk yogurt, raw milk mozzarella cheese and would cook with it as well and believe that was a big part of my healing.

I'm glad you are telling your daughter to do the detoxing. It's actually critical if she wishes to heal, unless she is one of the few that have detox pathways that are working really, really well. Please explain to her that detoxing will save her organs. The liver, gall bladder, kidneys and bladder will all be working over time to help her detox, so she has to help them, or they could get damaged. This is not to scare either of you, but to be realistic. Detoxing is that important.

Not only that, but her situation sound much like mine. Maybe you can get her to read my story? I'd also be willing to email with her if she would like - or you! LOL! If I can be of help, please feel free to ask.

As for the lemon, just add in a bit. There is no specific amount. I add a health squeeze into my glass each time, but it hold a full quart of water. If she doesn't like it with lemon, she can add stevia or xylitol to help sweeten it a bit. You do want to have her rinse her mouth after drinking water with lemon though as the lemon is hard on the enamel of the teeth.

As for you - try some cranberry concentrate pills. I too have had that hot/burning electrical whatever smell and it's turned out to be my kidneys needing a bit of help.

Sheann a case manager? Do you have teamsters insurance? I do and that is what is offered me. Just curious.

Oh and I refused but just because I didn't feel comfortable with them knowing everything. That's just me.

Get your daughter a dry brush. She will love that part of detoxing. It is really relaxing.

I did not like sauerkraut as a kid and my Mom put hot dogs cut in pieces in it. When I introduced it to my grands I put in organic chicken or turkey dogs in theirs. They ate the dogs and not the kraut, lil spoiled brats. LOL!! But maybe it will work for you.

The reason a lot of people can't detox appropriately is because their methylation pathway is not functioning properly. We often equate that to gene mutations, but that can be only part of the problem. The methylation pathway requires catalysts to function properly. These catalysts are magnesium, zinc, copper, molybdenum, Vit. B6, Vit B12, boron, selenium, manganese, and most likely chromium. These are just a few that we know about. Your daughter most likely is deficient of some of these nutrients. A problem can also occur by supplementing these nutrients. Start reading up on the supplementation of these items and what foods to eat that contain these items.

Another issue with the methylation pathway is that it has components that are pH sensitive. They only function properly with a moderate pH and the cytokine cascade of inflammation causes a more acidic environment. Eating less acidic foods can help, especially if she has joint involvement where the polysaccharide chains of the synovial fluid are now being shortened due to her condition.

I am blue cross blue shield and teamster. I was not asked for lyme diagnosis. I was asked 9 years ago for an injury (not work comp) and just said "no thank you" and nothing was denied to me. They paid as usual.

You can always call the number on the back of the card and ask. I just called and asked them what do I do for Medicare and they told me I would be bombarded with all kinds of offers but do not take any offers, just use them as my supplemental. They had a chance to take my money and me not use them so I appreciated their honesty.

Just an update:

We took our daughter to see her LLMD on Thursday. Two new antibiotics, Minocycline and Cipro. We are aware of the risks with Cipro and was advised at the first tendon pain to stop taking it. Hopefully there won't be any problems. After just a few days on her new antibiotics she is showing improvement with the stuttering. We are hopeful that improvement will continue.
The next step if these two antibiotics don't work is IV Rocephin or Silver. I really hope our daughter doesn't have to go down that road.

Our LLMD has our daughter taking a supplement to help with detox. It is NRF2 activator it is for antioxidant and detoxification made by XYMOGEN. Has anyone tried this? I haven't seen anyone mention this.