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Old 09-25-2004, 08:23 PM   #1
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Rubeckia HB User
A fellow Lymes sufferer

Hello, I found this board today while searching for diet advice for the Lymes patient and I am so happy-read thru most of the posts and am comforted that I'm not alone in this.

My history: I took a deer tick out of the back of my left knee on Oct 30, 2003. I'm a returning adult college student and I was working in the Nursing Dept at the time, so a couple of the instructors insisted I see my family dr. The next day, he looked at the bite and then got out a book and showed me pix of the bulls eye rash and told me if it showed up to call immediately, but that he thought I was over reacting and sent me home. From the moment I felt the tick in my leg, the bite site was painful! The night of Nov 14, the back of my leg started itching and my husband told me it looked like a bulls eye rash was forming. Called the dr early in the am and went to see him. His comment, I was hoping for a much more classic rash. He put me on 200 mg Doxy for 3 weeks. Early the next day, we left for a weekend bus trip sponcered by the college-again many of the Instructers for the Nursing Dept were along. By this time, my rash had blistered in the center, was swollen and I could hardly walk-not the best situation for walking around NYC! I put a cold water bottle on my leg for about half the trip and was able to hike around the city, but was exhausted when we got to our hotel room. My symptoms were much like everyone else's here-headache, joint pain, short term memory loss, and I seemed to get better until the 3rd week of the Doxy when I must have started Herxing. Went back to the dr who ordered blood titers, and with the results in hand told me, basically it was all my imagination. Then on Dec 1 on my way home from school, I t-boned a 1999 Chevy Tahoe that did an illegal U turn directly in front of me at 55 mph. Totaled the Tahoe and my Voyager van too and both my knees were injured when the dash shattered, 6 stitches in the right and bruises, contusions and swelling in the left as well as horrible wracking pain in my back and neck. The ER staff kept asking me questions thought I was in shock as I had no short term memory. I kept telling them I had Lymes Disease. As a result of this I talked the dr into another week of antibiotic (which he said I didn't need that standard treatment was 3-4 wks). He did NO followup of any type telling me that I should be "cured". The stress was unbelievable, I missed the last 2 weeks of classes and most of my finals. When the next semester started I was carrying 15 credits, a work study job and tutoring. That semseter was pure hell. My advisor's daughter had also had Lymes so he was very sympathic and he was also my instructor for a couple classes. I began to do research on the web and kept him informed of what I found. I told all my profs about my condition and they were most understanding, but I found the short term memory loss to be the worst symptom. Also, my typing suffered as all the letter would be there, just not in the proper order. I managed to graduate with my Associates in MIS and a GPA of 3.4. ( The advisor told me that my previous GPA was high enough that I could earn all D's and still graduate).

I still needed 2 classes to complete the degree, and I signed up for them during the summer plus an additional one as I'm going into Elementary Education and continuing on. One class was canceled, the ed class was easy (long term memory) and the other was Statistics. What was I thinking -10 classes in 5 weeks? I understood and did well in class and on the homework but in my tests I reversed things (dyslexia). But all I needed was a D and I managed to earn that. At the same time I was counciling at Church camp and commuteing in for the classes for 2 wks. Around this time rashes started appearing, weekly diahreah and several times while driving I would not recognize my surroundings. Pretty scary stuff.

While talking to one of my aunts, I was reminded that 2 of my cousins had Lymes and went to a great LLD in NJ. Both are symptom free. I got her phone number and finally had an appointment in September. She saw me for 2 hrs and we were so impressed! She understood my symptoms and even brought some to my attention that I didn't realize were related to the Lymes (like hic ups). I am on Biaxin 500 mg and I take 2 tablets plus acidolphis and have an appt Oct 20something to see her again. She ordered lab work so I'm guessing she's testing for coinfections. I 've been on the meds 3wks and feel better however I seem to have hot flashes all the time ( I remember this happening on my first course of Doyx too.) as well as night sweats. At first I thougt is was hot flashes as I've been tapering off of my hrt on the dr advice, but after reading this board, I'm starting to think its Lyme related. Could this be a sign of Herxing?

I know this is long but I have one more thing to mention and want some advice too. I also have low blood pressure and low blood sugar (always had these) and the dr has me on no sugar and no yeast diet. Last Sunday my back was hurting, I took some pain med and a nap, to cut to the chase, I blacked out twice, falling both times hitting my hip and head. The whole right side of my face from my jaw to hairline and ear hurts, especially when I chew. Went to the chirop. the next day and he said everything was out of wack but seems to be better now. What should I eat so this doesn't happen again? I had eaten a good lunch, but apparently not the correct things.

BTW, I'm only carrying 12 credits this semester -dropped a math class as I just knew I couldn't cope with it and am commuting 72 miles three days a week ( I can't get these classes at my branch campus) and am 2 days at the branch. Not working, but am tutoring.

Oh yes, I had two people come up to me and say they wondered what was wrong with me as I sure don't look sick. That was a BIG help.

Sorry I wrote a book, but the sharing is pretty theraputic.

 
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Old 09-27-2004, 06:21 PM   #2
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Re: A fellow Lymes sufferer

Hi Rubeckia, welcome to the board! Congratulations on graduating, especially under such difficult circumstances.

You are defintely not alone dealing with Lyme. It is terrible that the majority of doctors are ignorant about tickborne illnesses. Although a bullseye rash is a definite sign of Lyme, only about 50% of people who have Lyme ever get a rash. Also, three weeks of treatment is never long enough for Lyme even if the infection was caught immediately.

Are you seeing Dr. E in Jackson? She comes highly recommended. Finding a good doctor is half the battle. I hope she did test you for the co-infections because many people with Lyme are co-infected. Night sweats can be a big symptom of the co-infection Babesiosis.

You should see a neurologist regarding the blacking out episode. You need to find out for sure what the cause is. It could be low blood sugar, a seizure or something else. It needs to be taken seriously.

People often get upset when others tell them they don't look sick. I can understand getting upset, but maybe they are trying to make you feel better. I like to say if I looked as bad as I feel, you would run away!

Good luck at your next appointment. Keep us posted.

 
Old 09-29-2004, 08:55 PM   #3
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Rubeckia HB User
Re: A fellow Lymes sufferer

Ticker,
Thanks for the warm welcome! The Dr I'm seeing is Dr Demarco in Egg Harbour City and she did send me for more tests so I'm sure she's checking for co infections.

I really think the blacking out was low blood sugar-I've had it all my life and now its a bit more difficult to remember to eat and the old staples I used to eat (potatoes, breads, candy) to equalize it are not allowed on my diet. But I'm coping-started drinking sugar free juices and that seems to help.

Loved your quote about how you feel - I will remember it and use when the situation calls for it.

Rubeckia

 
Old 09-29-2004, 09:17 PM   #4
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Re: A fellow Lymes sufferer

Hi Rubeckia,
I am sorry you are going through this but so glad to hear you are seeing a doctor willing to help. What lab did she use to test you for co-infections?

There is a book called The Yeast Connection by William Crook that explains the sugar stuff well. You have to decide where you want to draw the line as the book is very strict. I can give up the sugar side but not all the stuff they say causes yeast so you have to figure out what works for you.

My LLMD says if you are 85% - 90% good you will be fine. I treated myself to pizza recently and boy was it good.

Ticker,
That is a good come back and I'll remember that one too. Hope you are feeling well.

 
Old 10-01-2004, 12:52 PM   #5
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Re: A fellow Lymes sufferer

Hi Rubeckia, I am glad you liked my quote!

I have heard the doctor you are seeing is knowledgeable. I am glad she is checking for the co-infections. Which antibotic and dose are you taking?

I have had a few severe blood sugar drops and it is very frightening. I am sorry you have to deal with it on a full-time basis.

 
Old 10-01-2004, 12:54 PM   #6
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Re: A fellow Lymes sufferer

Hi Komondor, glad you liked the reply!

I am glad to hear that you had pizza! Oh the things we used to take for granted, huh?

I am hanging in, how are you doing?

 
Old 10-01-2004, 07:47 PM   #7
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Rubeckia HB User
Re: A fellow Lymes sufferer

Komondor,
Thanks for the heads up on the book, I've got a bid in for it on Ebay and so far no one else seems to want it. Good for me! I'm also waiting for my Sugar Busters book (my LLMD reccomended it).

Pizza sounds wonderful, its something I surely miss. My daughter told me that Dominos has a pizza made from a wrap-may have to ck that one out!


Rubeckia

 
Old 10-02-2004, 09:53 AM   #8
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Re: A fellow Lymes sufferer

Hi Rubeckia,
I love e-bay and the book is actually a boring read so I am sure it is not very popular. Dominos probably has sugar in the sauce so be careful. That was my first pizza in over a year and I really miss my weekly pizza and molson golden. Hope you are feeling better.

Hey Ticker,
I am doing well. We are painting the house this weekend and hoping the smell will not bother me as much as it used to. Do you have problems with chemical stuff? I can't take being around perfume etc. Dogs are doing very well too.

I dropped off a few Lyme disease the basic booklets at our local counry store yesterday and two were picked up before they hit the counter by customers in line. I will have to drop off some more on Monday. I ordered 100 booklets and will also leave some at the deer check stations which are little mom and pop stores in our neck of the woods.

Hope you are feeling better.

 
Old 10-03-2004, 01:28 PM   #9
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Re: A fellow Lymes sufferer

Hi Komondor. How did the painting go? Did the smell bother you? Luckily, I have not had problems with chemical things. I am sorry you do, it just makes everything more difficult.

I am glad your dogs are doing well!

It is excellent that you are educating others. The people you are educating
are sharing the information with people they know also, so it helps more than you know. Often, people are surprised at how serious and debilitating Lyme disease can be and that there are other infections that ticks can transmit.

Keep up the good work!

 
Old 10-03-2004, 02:00 PM   #10
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Re: A fellow Lymes sufferer

Rubekia,

I was happy to read your post. I have been feeling poorly for 6-1/2 months and recently diagnosed possitive for lyme by my primary care doctor. I am on the standard 100 mg doxy twice daily for 3 weeks. I am not optimistic that this will help, and will see my doctor in the 3 weeks. I'm sure she will pursue this further if I still feel ill. I've heard of 2 lyme doctors in my state, one I don't think I'd feel comfy seeing and the other is a trek for me, especially if I'd have to go often. I would like to be treated by my own doctor or referred to infectious disease doctor nearby. I have Duke University Medical Center and the Univ. of N.C. in Chapel Hill practically in my backyard. Someone there should be able to treat me if necessary. I have such tingling in limbs and face and pressure on one side of my face, ear and eye area, achy and swollen joints and feel lethargic all the time. I'm sure my husband is sick of hearing about it, not as sick as I am of feeling this way. I hate to wait till my 3 weeks of doxy are up. I've only been on it for 5 days. Since I presume, I've had lyme all these months, I'm really frightened of either long term problems or not recovering at all. I have the name of a Chinese acupuncturist/herbalist that has treated patients of my doctor's, for a variety of ailments. I've read that Chinese herbs and treat lyme well and might go to him in addition to my traditional treatment. I don't want to jump the gun, but have felt bad for so long, it seem all these months, I've been waiting another week or 2 for tests results before moving on to the next option. I am happy to hear Biaxin is working for you and will pass this info on to my doctor. Please keep us all informed to your blood work results so we will all gain info from this.

JMM
Raleigh, NC

 
Old 10-25-2004, 08:28 AM   #11
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Re: A fellow Lymes sufferer

Rubeckia:

I read your post of 9/25 and wondered how you did on your Biaxin treatment. Have you had your appt. with Lyme doctor?

I saw Lyme doctor last week and had all the blood work done. I won't know results till my next appt. which is the week of Christmas. Since I do have lyme symptoms and my primary doctor has sent me all over kingdom come for tests since my symptoms first started the end of March, so many things have already been eliminated. I am on 100 mg. minocycline twice daily and 500 mg. Biaxin twice daily, along with acidophilus, hoping to help with any possible stomach problems.

Let us know how you are doing.

Ral86

 
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