posted
I've been so confused with my husband's symptoms. He doesn't have any pain (I know...lucky him) but he can't see straight, has severe double vision, loses his balance easily, has tinnitus, no appetite (has lost 25 lbs in the last three months)along with crushing fatigue. He says he feels very sick all of the time.
He just sits or sleeps all day and when he can tries to research this illness. So I'm wondering is it MS or Lyme? The reason I question this is because he has no pain...no joint pain, headaches, muscles aches, etc. which is typical for Lyme.
I also want to mention however that he was diagnosed with Lyme 7 years ago with a very stiff and swollen knee. He couldn't walk and worked from home for a month. He took doxy for several weeks then seemed fine.
He never had any other symptoms until this past Thanksgiving. It stated with the double vision and got progressively bad over the winter. He's been on several oral antibiotics over the last few months without much relief.
My husband also foolishly has spent countless hours in the woods with very little protection...for years!! He would take our dog for long walks each weekend off trail in the local state park.
We also have a wooded area near our home where he would take the dog for long walks week day mornings before work. So it would seem impossible for him to have avoided getting Lyme!
His blood tests have come back positive for Lyme (could this be from the earlier Lyme?) His MRI shows multiple lesions on his brain. However his spinal was negative and as a result we were told that the insurance co won't pay for IV antibiotics.
I wonder what the cost of IV antibiotics are out of pocket? This scares me....
I wish we could just wake of from this horrible nightmare!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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posted
Don't forget to look into mold as well.
Posts: 52 | From USA | Registered: Sep 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Signs, it definitely sounds like Lyme to me. If he has past DX of Lyme and was walking the dog in the woods daily, he is high risk!
Symptoms can present very differently from one person to the next. Before my dx, I did not have the debilitating fatigue that so many talk about yet I lost hearing and had migrating joint pain, brain fog and buzzing sensations prior to my diagnosis. I have the fatigue now!
It is unclear if you have contacted a LLMD, but if not, I would get him to one ASAP.
Even oral ABX will help your husband - as testified by many on this site. It is also possible that your insurance co. will authorize IV ABX if over time, the orals are not helping him. Each case is different, so don't give up.
Posts: 2386 | From New England | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Others may want to chime in on this, but I believe that a brain spect scan can show abnormalities typical of neuro-Lyme, as opposed to MS.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I hadn't thought of mold......something else to consider.
I do believe he's high risk for Lyme!! He was on Doxycycline, Amoxicillin and at least one other oral which I can't recall the name of the last few months. Each time he would take something new it would help for a day or so but that was it. I do feel that if it is in fact Lyme he should be on IV antibiotics.
He's seen a LLMD. I'm not sure how good he is but everything seems to move at an excruciatingly slow pace. (He's currently on vacation)as well as several other non LLMD docs. I'm looking for more LLMDs.
I wish I could get him to an LLMD ASAP however appointments are so far out. We did make an appointment with someone in NJ (a Dr. RR) but he won't get to see him until 5/30....hoping for a cancellation.
Have been wondering what to expect financially for the IV antibiotics? What do they tend to cost a month?
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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posted
he had lyme 7 years ago??? on doxy for a couple weeks??? sounds like the lyme "came back" no doubt.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
I didn't realize that brain lesions look different for Lyme as opposed to MS. Our non-LLMD doc never mentioned this but only he has multiple lesions scattered over his brain.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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posted
"he had lyme 7 years ago??? on doxy for a couple weeks??? sounds like the lyme "came back" no doubt."
This is what I keep thinking and I wouldn't be surprised if he has a new infection as well!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lyme and company, i.e. babesia. Unfortunately, your husband needs to change his ways (walking where ticks live) or he is just going to get worse. He needs to get to an LLMD, and get on orals.
Others on this website have gotten well just on orals, even people who have had lyme 10 years. It sounds like he just kept re infecting himself (increasing bacterial/parasite load), which makes it worse.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Pain was not one of hubby's symptoms for at least the first 8 or 9 years he was sick. His main symptoms were nausea/vomiting/dry heaves and Parkinsonian tremor/myoclonus/dystonia and seizure-like episodes.
I would also advise a brain SPECT scan -- really needs to be done at Columbia Presbyterian University in New York.
Hubby has the lesions on his brain -- a very comon symptom for neuro lyme. The lesions generally look the same with MS and lyme.
The brain SPECT scan might be enough to get insurance to pay for at least 28 days of IV antibiotics. The SPECT scan shows blood flow to the brain which is reduced if you have brain inflammation.
Based on your description of symptoms I think there is also a high probability of babesia as well as lyme.
You might be able to get into a neuro opthalmologist quicker than an LLMD -- there are a few that are lyme literate. Post in seeking for a name.
Good luck and do not give up.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I didn't have pain the 10 years I went undiagnosed with lyme disease and 2 coinfections.
My main symptoms were extreme muscle weakness (couldn't stand for more than a minute, hold a phone to my head for more than 30 seconds, hold my mouth open to have my teeth cleaned, etc.), horrendous fatigue, couldn't sleep, and then a false menopause.
I also felt sick all the time and lost weight.
So, pain is not a prerequisite. There are hundreds of lyme symptoms and some include pain and some don't.
Here is a quote for you:
"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (page 3)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You write:
* "His blood tests have come back positive for Lyme (could this be from the earlier Lyme?)"
Earlier lyme was never properly treated. It is STILL lyme. Perhaps other tick-borne infections, too.
* "His MRI shows multiple lesions on his brain."
Yes, can happen with lyme.
* "However his spinal was negative"
Spinal taps (lumbar punctures) are NEVER a good test for lyme, although many IDSA doctors require one to confirm testing. It is wrong 99% of the time - for lyme.
* "and as a result we were told that the insurance co won't pay for IV antibiotics."
I am so sorry about this. They likely might have only paid for one month's treatment, anyway.
It's a terrible situation, I know. I hope there is somehow he can find a proper doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Google: Borreliosis, vision
and
Bartonella, vision
Several good links here that do not show up at PubMed.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Signs9:
Your husband's story sounds EXACTLY like mine. I had double vision, dizziness, tinnitus, lost 25 pounds, etc, etc. I'm a male, 6' in my 30's. I NEVER had pain of joint issues of any kind. Period.
It is LYME not MS. MS doesn't do this. RUN to an LLMD as soon as you can.
I also had two small spots on my brain MRI and a highly abnormal brain SPECT. My non-LL Neuro at the time wanted to do a Spinal Tap and I refused since I know they are often negative for lyme. (and then they can be used against you.)
I've only treated with orals (and now IM Bicillin) but I want you to know that I'm 90% back to my old self. The major symptoms are gone.
Find an LLMD if you want to get your husband well.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Thank for all of your helpful replies!! We've been doing a lot of reading over the last several days and have been trying to get an appointment with a good LLMD.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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