posted
I just basically needed a little support from my lyme family. I have been a little scared lately I have not been doing very well and pain keeps getting worse. I have not been able to receive treatments for about 6 years now. I have had lyme for about 21 years. I haven't been able to receive treatments because about 4 years ago I was about 65 pounds (when normal weight should have been 110 for my age and height) due to other problems the lyme had caused. I was receiving 4 grams of claforan at the time via IV. I think that at the time it was too big a dose for such a low weight. Shortly after I received those treatments I have had severe pain on each side of my back and it has only gotten worse over the years. Doctors have been trying to figure it out and speculate my adrenal glands, but aren't sure. I wonder if they could have possibly been damaged. So now I am stuck not being able to take meds. because it causes the pain to get so much worse. I know the pain is not lyme itself I know it is definetly something the claforan did. I have been in so much pain that my chest hurts badly a lot. I can't get some of the doctors to understand that when a body is in so much pain it can hurt your chest. I am so scared something will happen to me as I am getting sicker and they can't find this other problem. I have a 2 year old little girl and a husband that need me. I need to find some relief for the pain too and can't seem to have much luck. I have gone to pain specialists in the area but just my luck he is part of the bunch that really doesn't believe in lyme much and if at all he believes Steere. He was no help and did not want to help me. I just need a little encouragement and if anyone has a suggestion I would appreciate it. OH! Does anyone know anything about John's Hopkins and how they look at lyme?
Posts: 47 | From WV | Registered: May 2006
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Sorry you are in so much pain. I am not a doctor, but could it be your kidneys? I think you may be dehydrated. I was on morphine 4 yrs ago, and started doing enemas.
I must have really been dehydrated, because not to long after I started doing colonic and enemas, I was able to go off pain meds.
There is a definite correlation between dehydration and pain. You might want to google in healing + water and check it out.
Hope this helps,
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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bettyg
Unregistered
posted
Breaking this up so we can read/comprehend for us neuro lymies. Please hit the enter button often and double space between each paragraph ok. We thank you.
quote:Originally posted by lymefighter7:
I just basically needed a little support from my lyme family. I have been a little scared lately I have not been doing very well and pain keeps getting worse.
I have not been able to receive treatments for about 6 years now. I have had lyme for about 21 years.
I haven't been able to receive treatments because about 4 years ago I was about 65 pounds (when normal weight should have been 110 for my age and height) due to other problems the lyme had caused .
I was receiving 4 grams of claforan at the time via IV. I think that at the time it was too big a dose for such a low weight.
Shortly after I received those treatments I have had severe pain on each side of my back and it has only gotten worse over the years.
Doctors have been trying to figure it out and speculate my adrenal glands, but aren't sure. I wonder if they could have possibly been damaged.
So now I am stuck not being able to take meds. because it causes the pain to get so much worse. I know the pain is not lyme itself; I know it is definetly something the claforan did.
I have been in so much pain that my chest hurts badly a lot. I can't get some of the doctors to understand that when a body is in so much pain it can hurt your chest.
I am so scared something will happen to me as I am getting sicker and they can't find this other problem. I have a 2 year old little girl and a husband that need me. I need to find some relief for the pain too and can't seem to have much luck.
I have gone to pain specialists in the area but just my luck he is part of the bunch that really doesn't believe in lyme much and if at all he believes Steere. He was no help and did not want to help me.
I just need a little encouragement and if anyone has a suggestion I would appreciate it. OH!
Does anyone know anything about John's Hopkins and how they look at lyme?
Wow, lymefighter, so sorry to read your story of such tremendous weight loss! Could it be that you are allergic to foods too like I recently learned?
I'm allergic to gluten, case-in, cow's milk, wheat/rye, garlic, etc. Do you have a lot of diarrehea and your gut always feels sick?
You mentioned John Hopkin's; I believe it was Lou or someone else that said it was NO GOOD like Mayo Clinic, Minn. ... they aren't lyme LITERATE!
If you see Lou's name, without a Lou B, sent him a PM to see what he might tell you ok!
I'm not a MD....just a lymie of 36 yrs; 34 misdx! Bettyg
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posted
I am sorry that you have some much pain and difficulties now. I understand the fear and being scared beyond all comprehension. With my present set of symptoms, I too am at a critical junction.
Pain is a unique physiological response to an adverse event in the body. I am not an expert, just someone who was a nurse and has learned a great deal from reading, this board, and being fellow lyme patient.
There could be many reasons for the pain: Dehydration can cause tremendous pain. You may think your water intake is okay, but for a person that has no disease process, the minumum is your body weight , numerical value, divided by 2 for the amount of ounces of water. A lyme patient needs to drink in excess of that. Water flushes toxins such as lactic acid out of mucles, etc.
Another contributory factory is the neurotoxins that lyme and coinfections can release which causes pain, You may want to read Mold Warrriors or other books from Dr S to deal with this problem. I am sure other modalities as Fir saunas , rife machines, massage therapy are all types of alternate treatments that other board members will weigh in that you may want to explore if they are of benefit to you. Just to mention a few. Perhaps hypnosis could be of help? When I worked at a facility, some cancer patients reported some success with this. If I can think of anything other suggestions, I will add on.
Stay strong and I shall keep you in thoughts and prayers.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
lymefighter, I'm so sorry for all that you're going through. I really don't have the medical knowledge to help much, if at all.
As far as lyme treatment, there are many people who cannot take IV or other ABX at all, and have found alternative treatments.
You may want to do a search here for alternative protocols, or check out the "newbie" link at the top of "medical questions."
Your case sounds very complicated, and urgent, in that you are in so much pain, and feeling scared, too.
If regular MDs cannot find the cause of your pain, have you tried any alternative care providers, such as acupuncture?
Acupuncturists are trained in Chinese Medicine and are often very successful at helping with pain relief, and can identify, within the TCM (Traditional Chinese Medicine) model causes of pain.
If you think that your adrenals are part of the problem, this is something they can help with. If you do decide to go to an acupuncturist, it's important to find someone with a lot of experience, and a good reputation in your area.
Other alternative avenues that may help you are Reiki and Qigong.
Hope that you find something quickly to get some relief and help.
Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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posted
The pain in your chest may be costochondritis -- inflammation where the ribs join the sternum (breastbone). Does it hurt if you press on the sternum? This is a common Lyme symptom.
In my opinion, your best bet would be to go to an ACAM doc (American College of Alternative Medicine). These docs believe in nutrition. Seems to me like you need to gain weight and get stronger and probably do some detox things before you attempt any antibiotics or even herbal treatment.
These docs usually charge by the hour. Some are very expensive and others are more reasonable -- just ask lots of questions or study the website if the doc has one to see what types of treatments they do.
3 or 4 months to build yourself up or even 6 months is a whole lot less than the 4 or 6 years you have already been without treatment.
Once you get stronger, then it will be time to look for an LLMD.
You didn't say if you have G.I. problems or not. When hubby 1st got sick he lost 30 pounds in 3 or 4 months. Took him a year to gain it back and he wasn't doing antibiotics as he didn't have a diagnosis at the time. He had chronic gastritis and malabsorption and 3 different G.I. parasites.
Lyme can cause all sorts of G.I. problems -- everything from parasites to leaky gut etc. -- an ACAM doc should be able to figure out why you can't gain weight. Could be a fat digestion problem.
Keep us posted on how you are doing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Is it just abx through the blood and stomach that give you problems?
Because there is bicllin injections. If you think you could do this I would get a llmd.
There are also a couple natural antibotics. If you think you could do this either a llmd or perhaps a ll natural practioner. I know JimBoB takes only herbal stuff.
I have also heard that alot of people do rife. i never have but some seem to strongly belive it works.
posted
Thank you all for your support. I think it is so important to stick with one another.
I think that I might not have made a couple of things clear enough in my earlier post. I used to weigh only 65 pounds due to a blockage in the dueodenal area about 6 years ago.
They did a bypass and I am able to eat again o.k. now. I am now almost 100 pounds again. Who knows what caused the blockage though. Probably lyme or abx.
The problem with abx is that when I take them for some reason it kills those two spots in my back. Nothing to do with my stomach in taking the abx. My back also hurts worse around the time of my cycle, when I take birth control, and when I get an infection in my body.
I have had my kidneys checked and so far o.k. there I think. I have tried some herbals but right now it seems to make me a little sicker.
I am scared to be off abx for too much longer. I feel my body regressing faster all the time.
I had mentioned John Hopkins to find cause of pain in back because where I am from the doctors seem to be so stupid concerning even normal problems.
I dont even want them dealing with the lyme at this point. I have a LLMD for that.
Again thank you all so much for the advice.
Posts: 47 | From WV | Registered: May 2006
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