posted
This journey has been such an emotional roller coaster for my husband and me! Just last week he had a good day and I thought WONDERFUL!...he's on the road to recovery! ... Only to despair when his symptoms make a turn for the worse.
Hubby has been sick for more than a year (years?) but he only started feeling bad in January. His symptoms went downhill so far and so fast through March, April and most of May. His symptoms are double vision which has gotten worse, crushing fatigue...gotten better, severe weight loss, loss of balance and slurred speech.
We went through many doctors and he's been seeing an LLMD since April.
Our LLMD got him on IV Rocephin the end of May and within two weeks his crushing fatigue lifted and he regained his appetite. Through March-May he lost almost 40lbs. This was a man who was thin to begin with. Once he turned the corner and his appetite returned he has regained 15 lbs.
His balance was so bad that he kept falling over and needed a walker to get around. Now with IV abx and seeing a physical therapist his balance is much better. He uses a cane and can sometimes go with out it. I'm actually surprised at how well PT has worked for him!
Double vision continues to get worse however. He has an appointment with an neuro ophthalmologist at Wills Eye hospital the end of the month.
I think the thing that concerns me the most right now is his speech! I can hardly understand him and I know how frustrating is is for him. It's gotten progressively bad over the summer. It scares me too!!! Why would it be getting worse instead of better? Even after all of the supplements and the IV Rocephin?
Like so many others I wonder...Is this Lyme or something else? We have gotten some pos lab results for Lyme but he had it seven years ago and seemed cured after a month on oral Doxy. Never had a problem after that until this past year.
Anyone else or know of someone who had problems with slurred speech and have gotten better? We see a speech therapist next week. TIA!!
[ 08-10-2012, 10:45 PM: Message edited by: signs9 ]
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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Thanks and I do hope you're right when you mention that he's improving "overall". What's so frustrating is that it's really hard to tell for sure....or even that it's definitely Lyme.
Sometimes I think it might be something else but the doctors say that he doesn't have ALS or MS even though he has several lesions on his brain.
I get very scared thinking about what the not too distant future will bring. He has a great job that he can no longer go to and they have made him go on short term (six months) disability.
Up to this point he's been working from home since February and getting his regular salary.
When the short term ends he has long term disability through Cigna but I have read so many horror stories about disability claim denials.
So many people who have been turned down and have to appeal repeatedly until they are just worn down (in addition to their illness) or simply bankrupt. This scares me a lot!
I had my own business from home but have cut it way back to help take care of him.
He's been on IV Rocephin which helped a lot the first month and now that it's more than two months (I realize that's not very long at all in the Lyme world) I'm thinking that maybe he should try another IV abx.
If you feel like moving the thread to medical please do so and thanks for all of your help!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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I agree it's the worst when you're feeling so sick with no end in sight ...or even if there ever will be an end to this misery!
I hate being so scared and worried all of the time. I have cried more over this past year than in all of the years of my life which is just about every day. And worry about the stress it's putting on our family. Everyone here can relate.
So I'm wondering if anyone here has or knows of someone who has had very bad slurred speech and has overcome it and sounds like they did before?
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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My son has had lymes and Bart for 11 years. His speech is slurred at times. At one point we could not understand anything he was saying.
It was like the words wanted to come out but he would get so frustrated he would just say never mind.
I have noticed this symptom come and go. He has been in treatment for a little over 4 months. We are seeing improvement very slowly.
Posts: 4 | From HI | Registered: May 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Your husband has only been on IV Rocephin for about two months. The latest study on neuro lyme (Dr. S) proved that patients symptoms do not really start to resolve until at least month SIX. (Often taking a year to resolve.)
You are on the right track, and the fact that your husband has gained some weight, and some balance back is proof of this. Just stay the course, and hang tight! I think he will start to see real improvement in another 2 months.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My speech was very slurred for a long time - due mostly to infection but also the
vestibular involvement.
That can affect vision, talking, walking, exhaustion, reading, etc.
When I was overwhelmed with sensory input it was worse (still is at times but I never could treat with a LL doctor so I've learned what helps and what doesn't).
Very common with lyme & co. and usually gets better with treatment, liver & adrenal support. Rest is essential to repair.
Also, it may help to avoid all fluorescent lights - even in your kitchen, etc. Scents, too, can be a drain on the senses.
Glad he is seeing a LLMD and getting aggressive treatment. -
[ 08-11-2012, 04:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Vestibular Symptoms - note how many can be caused by TBD (tick-borne diseaes)
Glad to hear that PT is helping. Hope the PT is LL, too. Vestibular therapy can also help but - FIRST - infection must be addressed or all the therapy in the world can't fix it.
Still, good coping and physical techniques can be learned.
Most vestibular specialists are not LL. Ask LLMD for suggestions IF they think it's necessary.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
TIMACA's thread here, too.
===================================
Liver toxicity and adrenal exhaustion usually go hand in hand as can balance trouble from brain & vestibular system.
Even with all that lyme & co. can involve, sometimes, it's something else entirely and not always "lyme" - a good ILADS-educated LL doctor can help sort things out.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I thought for a moment that I had written this post. It sounds so much like my hubby's story. What else is your hubby taking for meds. My hubby has had his Picc line in since last December. Hes had the gamut of drugs: Starting with Rocephin, Claforin, Clindamycin, Vancomycin, and is now on IV Doxycycline. For orals, he is on Plaquenil, Rifampin, Was on malerone but now off, and tons of supplements. In the past 2 weeks, we are finally seeing improvement. I also have worried non-stop about ALS. His speech seems to slur more at night when hes tired. He started PT 3 weeks ago. That also has made an improvement. He developed Foot drop. He wears a brace on his foot and uses a cane. It has been a long road. Don't give up hope.
Posts: 305 | From United States | Registered: Nov 2011
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My slurred speech happened after a traumatic tooth extraction (about 3 months before I was dx with late stage Lyme). The tooth that was pulled should not have had anything to do with it...and my slurred speech got progressively worse to where nobody could understand me at all. I realize now that it started getting worse because I was on antibiotics, first for the tooth extraction and then for sinus infection. Although I didn't know at the time that I had LD, the trauma of the tooth extraction woke them up and set them on their busy work, then the abx caused a massive herx reaction. When I got dx with Lyme and put on Doxy it was just horrible trying to talk. It got much worse before I got better. This was 4 years ago so I can't say for sure how long it was..but I talk completely normal now. My opinion is that something woke up the bugs, and now it's worse because of a herx dieoff. Don't give up hope
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Had the slurred speech,seems like babs was the cause of that as it was very bad while doing a-bab for babs. Today my neuro function is almost completely better. 2 years+ treating. Hang tough it will get better.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Thanks for all of your encouraging replies!!
Lymetoo, I thought that he might be herxing but it's so hard to really say for sure. I'm happy that he's walking better now but his speech has gotten so bad it's really scaring me! I'm just wondering if it's time to switch the IV abx to something else.
Manybites, I hope you and your son are both feeling better soon!
Blair, I'm glad you're seeing improvement for you son. It's encouraging!
AuntyLynn, Yes I have read that it often takes 6-12 months on abx before one sees significant improvement. Though he's only been on IV rocephin for just over 2 months I'm wondering if he should try something else.
It's discouraging to see symptoms go downhill so much while on abx. Yet yes he has gotten some (still has a long way to go) balance and weight back.
Keebler, He's getting plenty of rest and has been taking a lot of supplements in addition to his meds. Good to know his symptoms are not unusual.
Thanks for the link and will check it out! Not sure if the PT is LL but she's very good and understanding.
I'll look into vestibular specialists and see if I can find a LL one in my area.
mlg, He was tested for parasites and though the tests came back neg., I'm still not counting them out.
WP in VA, He does drink a ton of lemon water everyday but we have to try more aggressive detoxing. I'm going to look into having him try the epsom salt baths and yes he's been tested for co-infections. It looks like he may have bartonella too.
Lyme-o, In addition to the IV rocephin, he's taking: Biaxin, bactrim, nysatin, and a ton of supplements. He started his picc line the end of May. Is there a reason that your hubby has switched up the different IV abx? Does it help to do this?
The only reason I haven't worried about ALS is that he's consistently shown to have strong muscles in his arms & legs when tested each time. A neurologist has told us he has no damage to his muscles.
I understand your worry though! At first I thought mine had a brain tumor but when the MRIs showed there was none...only lesions I worry about him having aggressive MS. Glad to hear yours is finally turning the corner!
IckyTicky, I'm sorry to hear about your problems but I'm so glad that you have overcome your slurred speech! So you think that taking abx actually brought out your speech problems? Interesting. I never heard of that and will have to look into it.
norcal, So glad to hear that you've overcome it too! It's so encouraging to read about everyone who has overcome this!!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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posted
Hubby has changed so many abx because he would start them, take them for a month or 2 and plateau. So PA was dissatisfied and would change. Hubby was afraid of losing his legs and heading for a wheel chair so she started the Vancomycin. One of the most powerful. But they don't do it too long. Thats why she put him on IV Doxy. But today, they stopped everything due to elevated liver enzymes. So frustrating. Just when hes started feeling better
Posts: 305 | From United States | Registered: Nov 2011
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posted
lyme-o, I can understand the frustration! It seems that one takes a few steps forward only to take a few backwards. It's so confusing knowing which meds to take or hold off on.
We plan on talking with our LLMD within the next few days to ask if perhaps hubby is plateauing on the rocephin. Maybe he'll suggest another abx.
At one point hubby almost ordered a wheel chair but fortunately he didn't need it and his legs are strong but he just doesn't have any balance.
I do hope your husband is feeling better soon and continues to improve!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I was on antibiotics for 2 years. But I believe it was about 6 months after the onset that I regained my speech.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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We're calling the LLMD this morning for a refill RX for either more rocephin or to see if he thinks hubby should try something else.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- manybites just posted this at another thread. VERY detailed info on Page 2 about how lyme
and another strain of borrelia (Borrelia garinii) can affect the nervous systems.
This may be daunting detail but it also serves to validate the importance of treatment with a LLMD. While it may be a downer, it also helps us stay true to ourselves and withstand criticism from the naysayers.
You might ask your LLMD if the treatment will cover strains other than B burgdorferi.
--------------- Although the author is not listed on the first page, it seems to be from Dr. K as the home URL directs to his World Organisation of Neurobiology here: http://cinak.com/home.php?id=english
More really good detail there, too.
Although Borrelia garinii is supposedly predominant in Europe, it's important to still consider it world-wide, IMO.
posted
I lost my voice a few years ago before I was dxd with clinical lyme. I was also dxd with ALS. I have loss of muscle in my shoulders and hips.
My speaking voice came back but not my singing. There are a few notes that just won't work. My lips are very numb so its hard to form words.
It's been 4 years since I started losing muscle and it has progressively gotten worse. Just not quickly. The only thing I've tested positive for is fl1953.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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