posted
Hello,First off I want to apologize for all the typos I am right handed and have a cast on due to a broken wrist, so I cant type well.
I recently was diagnosed with Lyme.Up until Oct I biked 10-12 miles a day. And hiked ,walked and was active.
A couple of months ago I started to experience a lot of different symptoms of which I didn't understand.I woke up one day and could not bend, I thought my siatic nerve in my back was out.
In Nov of 2011 I fell down a flight of stairs due to chronic back pain which I never experienced before. then I got a little better and one day I woke up and it was in my neck.
I felt like I slept on my neck wrong. It only got worse. There was all this different tingling from my fingers and it truly felt like a pinched nerve. I had been experiencing a tingling sensation in my hands and a cold feeling that radiates from my shoulder down to my wrist.
by the end of the week this pain and sensation was so bad I could not move my neck so I went in to ortho doctor and they didn't know what to think, so I continued to decline in my health.
Later I started to have what seemed to be signs of nerve problems only on my left side of the body. So I went to go to the Primary Dr. and she ran a series of testing to find out what was going on.
It came back with Lyme's. So for almost 3 weeks I have been treated with Doxy 100 twice daily. Well I was getting better and then 3 days go i started to experience the tingling sensation and the numbing feeling in the arms again.
I feel like I have a bunch of needles going in me. I also feel on one arm hot only on the bottom of the arm and the right arm is like someone is putting a cold ice pack on me.Im also starting to feel like my neck is sore again.
I just came back from a visit to the primary Dr. again only to be told that the symptoms Im having are not usual symptoms of lymes.
The Dr. said she deals with alot of lymes patients and never sees the tingling sensation or the difference in cold and hot in my arms.She suggest going back to the ortho Dr. and get him to look things over. I cant justify that because my copays are to expensive.
I have 3 days left of doxy and she said there is no other oral antibiotic she can give me due to having a penicillin allergy.
I have my labs here with me and it looks like my IgG p45 is present. then the others numbers look negative. then Im also looking at what appears to be the Igm bands and it says that Igm p41,39,23 are present.
my dr. says that this is early lymes and it is most likely 1 to 3 months post bite. but why does it feel like Im back peddling here.
Am I always going to feel like my back and neck are broken ? What do I do from here I dont want to be like this anymore.
I dont know what else to do. After the visit with my Dr. I just want to cry.
Can anyone help me understand this. I have been reading the links here that everyone has been recommending to others. I just feel helpless now. Thanks
posted
Welcome!! I'm moving this to Medical where you will get more help. Since you are having trouble typing, I'm going to edit your post so we can all read it more easily. Hope you don't mind.
In the future, help us out by putting more space between every few sentences. It's hard for many of us to read large blocks of print.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Bands 41, 39 and 23 are very important. There is no doubt in my mind about your diagnosis.
You are most likely feeling worse because you are "herxing" .. you feel worse when beginning treatment. At the 3-5 wk point, you will have an even bigger herx. That's probably why "all of a sudden" you feel even worse.
Also, you need to be on a higher dosage as soon as you can find a doctor knowledgeable in the treatment of Lyme disease. The recommended beginning dosage is 200mg twice a day.
posted
Lymetoo, I did not post for a LLMD yet.I can not afford it.
My Dr. doesn't warrant another ABX.
She says there is not another one aside from Amoxacillian which Im allergic to Penicillin.
I only have 3 more days of a 21 day run of ABX. Again though my Dr. said these are not signs of Lyme, she feels I should go to a neurologist possibly , or go back and due a MRI with the Ortho Dr.
Also in 30 yrs my menstrual cycle has been only once a month well a couple of days ago I started to spot for a couple of days.
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
Neuros know nothing about Lyme. An MRI will not show lyme unless you have lesions on the brain. That is not real likely in early Lyme, but IS in late lyme. Do you want late stage lyme by not properly treating it NOW??
posted
Lymetoo, no I don't want Lyme in late stage. I do apologize.
I went in to my Dr. for a new antibiotic and she said there is no other antibiotic for me due to my Penicillin allergy.
Im trying to educate myself on the Western blot but I dont understand what my bands mean in reference to the info that you sent me.
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
posted
Lymetoo, I gather threw reading all the info that I need to seek a LLMD.
Something that stands out about what my Primary said is that even though my Bands read the way they do she states that I need all five bands to be in the next stage of Lymes Dis.
These symptoms are pretty aggressive to me. they knocked me down and continue to be bothersome.
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
posted
Hi catina, So sorry to hear what you are going through. The bad news is, you have Lyme disease. The good news is, you have found it early.
Early diagnosis and proper treatment with an ILADS (International Lyme and Associated Diseases Society) doctor may save you years of suffering.
I hear you when you say you cannot afford a LLMD, however, in the long run, it may be that you cannot "not" afford one.
I'm big on educating one's self, and for those of us with Lyme and Coinfections, it is never more important. So, I strongly suggest that you take a look at the ILADS website for starters: www.ilads.org
You can print this out, read it, share it with your current doctor. It gives many pages of information on various antibiotics, combinations of antibiotics, and dosages.
It is also possible that you may have tickborne co-infections, such as babesia, bartonella, ehrlichia, or others. These must also be treated. Often, testing is unreliable and may not report positive even if you are infected.
Treatment of Lyme and co. is complex, and can be long-term. For example, in my case, I was sick for 5 yrs. before being diagnosed, and I have now been in treatment for nearly 7 yrs! So finding a knowledgeable Lyme doctor up front, may save you years of ill health down the road.
Glad you found us at Lymenet. Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
| IP: Logged |
posted
100 mg doxy is not enough, u need to be on 400 mg doxy now, u had improved and now are backsliding, u have to be able to tell the difference between a herx, flarup or a backslide, go to 400 mg doxy, see how u do then u may need to change to 300 mg minocycline which will help more with the neuro symptoms, but first ramp up from 200 to 300 mg slowly, can also add in ceftin
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
After watching the video's you'll start to understand there is a controversy to diagnosing and treating lyme disease.
It started in the early 90's when a few MD's felt the disease was being over diagnosed, over treated and the risks to long term medical treatment (yeast infection and pic line infections) were too high.
posted
Nothing to apologize for, catina!! I was just relaying the cold hard facts.
There is NOTHING wrong with your doctor continuing the doxy, but she probably doesn't have the ****'s to do it. You do need double the dose you are taking.
--
we posted at the same time... so.. yes, find an LLMD ASAP, because your dr obviously does not know enough to treat you properly
Here is info on Band 39 .. It means that if you have that band (same with band 23), NOTHING else can make that band show up in a test except LYME. So, therefore, you do have it.
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
thank you Lymetoo Im going to look over sea's to see if I can get the extra ABX till I can get into the LLMD.
My mom gave me some extra Doxy so I can start doubling it.
Is having difficulty breathing anything anyone's has experienced.
Im asthmatic and been symptom free for a awhile and 3 days ago it got harder to take a deep breath in. Its not horrible yet but its definitely differen't for me.
Of course the Dr. did listen to and it sounds fine, but I don't fell fine
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Catina; I want you to know that there is light at the end of the tunnel. Your case is very much like mine. I found out I had Lyme about 5 weeks after the initial tick bites. Started out with the dose you are on, then herxed after the first week.
I found an LLMD, faxed my labs, and they got me in in 2 weeks. So I didn't really begin the correct treatment until about 8 weeks after the tick bites. It's called early disseminated, it had just started going into my joints. I was having slight knee and shin bone pain, then my elbows started, confusion, stiff neck. Same thing.
So I treated 4.5 months. I've been off ABX for over a year. I do still have pain in my elbows, tendonitis, from the Lyme but I'm very well. Of course, once we have this disease, we must always be aware of relapse, but if we get the right treatment early on, chances of lasting recovery are excellent. I think I'm a prime example.
We've got your back!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
| IP: Logged |
posted
Air hunger goes along with Lyme and/or its co-infections. I had this very bad when Lyme symptoms came on strong. After being on treatment it has mostly gone away but does show up from time to time, like it did recently.
I grew up close to where you are, but on the other side of the river. I remember seeing in "seeking a doctor" someone asking for an MD in Poughkeepsie. You might want to check that link and perhaps you can PM the person who responded to the request, or just put in a new request. You are going to need to be on ABX for quite a while and you will need an MD who will prescribe.
Also, while being on doxy you need to avoid being in the sun. This can trigger a chemical burn and you can get tingling of your hands and increased/decreased sensitivity to hot or cold water.
Posts: 478 | From Third Coast | Registered: Feb 2011
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Please make sure your Mom's Doxy is not old...... it is one of the only ABX"S that is very harmful if old....others just lose power..
Doxy is dangerous if to old.....also some people mention getting med as if for animal and adjust...
not sure if doxy is one of them,,
there are several other ABX's that help, the penicillin thing can be worked around..
Your doc said she's treated Lyme ,, didn't say if cured or how many patients fell through the cracks and are sick now/worse..
Please take this serious , the sooner the better,,,late stage is HE__!!!!!!!!!!!!!!!!
Take care , Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
posted
Many kinds of antibiotics are used to treat Lyme, plus there are lots of other kinds of treatments available.
I'm allergic to penicillin and the antibiotic I took for 5 years was oral clindamycin, 150mg, a couple times a day.
People are also doing herbs, like the Buhner herbs. Stephen Buhner wrote a book, "Healing Lyme," about treating with herbs. Many people treat with herbs when they are allergic to antibiotics.
It's best to see someone who knows what they're doing. Also do you have any support groups nearby?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
catina, your problem breathing sounds like babesia. Almost no one that contracts lyme disease gets only one infection. It is usually 3 or 4 and they each require different treatment.
Lyme disease is more accurately boreilliosis, babesiosis, ehrlichioses, bartoneliosis ETC. Doxycycline is recommended for the first drug of treatment because it hits borellia and ehrlichia and is somewhat effective (in the beginning) against bartonella and babesia.
In the long run, you will save a lot of money (not to mention years of your life) by seeing an LLMD now. If the babesia takes over, the drugs to treat it are extremely expensive. IV therapy is also expensive. People can spend tens of thousands of dollars treating for years.
You were very lucky to have a positive test result for borellia. You will have to talk to a LLMD for a clinical diagnosis of the other infections you may have.
Doxycycline is a very cheap drug. Worst case scenario, you can order it without a prescription online but it takes weeks to arrive. It is usually easily tolerated but you need to be careful of sun exposure. After you have been on it a month or so, you can burn very easily. Also, do not lie down an hour after taking it or you might get acid reflux.
Expect to feel much worse (the herx) before you feel better. Feeling worse is actually a good indication that the medication is working. Do not quit taking abx until you are symptom free for two months. This means your treatment will be at least four months if you want to avoid a relapse.
Everyone says treating lyme is a marathon, not a sprint.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
Just to update: Last night I took everyone's advice and doubled my evening dose of Doxy then I doubled my dose this morning and let me tell you I can already tell a difference.
The tingling my arms has subsided some. I still have the cold and hot feeling but we are headed back in the right directions.
The pain in my neck is a little better and I have energy today. Thank you all.
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
posted
I got a appointment for a LLMD and I feel so great since increasing my Doxy.
I feel like I have myself back. Thank you guys
Posts: 38 | From kingston,ny | Registered: Jan 2012
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Tingling was my first lyme symptom and I still have it in my arms and legs 2.5 years later. I have had 3 positive lyme tests. So your doctor obviously does not know about the disease. I also have difficulty breathing. I think it is related to the nerve dysfunction that the lyme causes. Since you have tingling as well, I'm guessing it's that.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic