Topic: Starting to Feel LIke I'm Wasting my Time with Treatment
seekhelp
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I'm getting kind of down on this Lyme treatment now. I've been sick since late '07, unable to work, function well, etc.
My wife made a comment yesterday that I really haven't gotten worse. I'm thankful for that. However, I've been on Abx treatment now 3 months and overall not much change.
I read all the stories on this board and just lose hope. My case seems different than most of you. I'd say 80-90% of my issue is severe muscle tightness / spasticity. I literally can't function due to this. It flares on bad days for 4-5 days at s time.
Any exertion and I'm done for 5-7 days. Pure suffering.
For goodness sake, all I had was an IGenix WB with a 23-25++, 31 IND, 41 IND, and 58+. Maybe it was a false reading and I have something else such as an unidentified muscle disorder.Why can't there be a 23-25 false positive?
I remember no tick bites. My symptoms just don;t line up with most on this board. Most others list 20 things, with the exception of one person who left this board. Maybe I'm going dosn a path that has no end? Supplements make no difference. Magnesium not much difference.
I have no way to go out-of-state for treatment. I never understand how people too sick to work are able to drive multiple states and pay thousands for 2nd opinions.
I'm taking Baclofen 2-3x a day (10 mg pills). This does little for my discomfort. My PCP recommended Skelaxin 800 mg 3x a day. I'll try this next. What in the world is tightening these muscles SO SO much?
I just don't know how so many of you treat for year(s) without improvement. I just can't see it. How do you think you're winning when you're not seeing changes?
I don't mean to be a downer. I just keep hearing flare-ups should reduce. My LLMD said things should get better after 5-6 weeks.
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Tracy9
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I don't think I'm winning. I'm worse than ever. But what's the alternative?
There are still things I haven't tried; like IV. I'm going down that road next. One thing is for sure, without treatment I am an invalid, bedridden, unable to function at all. So what is my option?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sutherngrl
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I did antibiotics for 4 months with no change. Started Malarone for Babs and in 2 weeks noticed a change for the better. You can never give up!
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seekhelp
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I am taking Malarone, but in weak doses. I am going to leave a voice mail and BEG my LLMD to treat more aggressively.
Tracy, I know your feeling. I relapsed harder yet when I got off Abx for 5 days. We don't have a choice.
I just keep asking myself who on here is being disabled primarily due to muscle tightness. That leads me to wonder if I really have Lyme. i just don't trust IGenix since every day I see 5+ new posters on here saying positive test from IGenix. Again, maybe I'm underestimating the prevelance.
I just can't comprehend why these LLMDs don't consider IV quicker if you have muscle spasms. OBVIOUSLY, it's neruo. If neuro treatment is best hit with IVs, then why waste time?
quote:Originally posted by Tracy9: I don't think I'm winning. I'm worse than ever. But what's the alternative?
There are still things I haven't tried; like IV. I'm going down that road next. One thing is for sure, without treatment I am an invalid, bedridden, unable to function at all. So what is my option?
Keep trying, or die?????
I have to keep trying.
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Carol in PA
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quote:Originally posted by seekhelp: I'd say 80-90% of my issue is severe muscle tightness / spasticity. Supplements make no difference. Magnesium not much difference.
Seekhelp, Which kind of magnesium are you taking? How much?
quote: Even a mild deficiency causes sensitiveness to noise, nervousness, irritability, mental depression, confusion, twitching, trembling, apprehension, insomnia, muscle weakness and cramps in the toes, feet, legs, or fingers.
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timaca
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seekhelp~ It is worth getting tested for other things too. I'm assuming your doctor ran lots of tests to rule out your medical problems. Were these things tested for: HHV-6, EBV, chlamydia pneumonia, mycoplasma pneumonia?
Timaca
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seekhelp
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Magnesium is a product called Super Mag (powdered form). It has citrate, gluconate, and two other forms. It offers 400 mg of elemental Mg per 2 tsp. I'm up to 900 mg+ a day.
Other supplements (long embarrassing list):
- Nature's Alive liquid multi - B-50 Complex - Creatine Monohydrate (5 mg) - Vit C (3-4 mg daily) - Selenium (200 mcg) - Zinc (50 mg) - Copper (2 mg) - Calcium (1,000 mg) - Vit D (6,000 IU) - D-Ribose - MSM (3-4,000 mg) - Liver de-tox formula - Humaworm - Resvertrol - Alpha Liopoic Acid - B-12 Methyl (2,000 mg) - L Acyl Carnitine (1,000 mg) - Fish Oil (1,500 mg)
As you can see most of Dr. B's recommended supplements = waste of $$$$ in my opinion. I'm thinking the whole supplement thing is dollars down the toilet. I'm not willing to shell out anymore. Any normal person would think I'm a moron for taking all this and I'd have to agree. My wife takes nothing and is healthy as a horse.
I honestly feel like such a sucker listening to these holistic doctors. I've taken all this stuff, spending hundreds of dollars a month on it, and no differences really.
I even have a bottle of miracle Mangosteen juice, but I'm not taking that.
Maybe I should've just taken the cash and invested it in a trip to Germany or a bio-tensor. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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My LLMD ran ZERO tests. Everything was clinical Dx. The person doesn't seem to believe in any testing. Thank goodness, I went to an ID who did pretty thorough testing and I just took the initiative to have a family doc run all the viral testing and re-run commercial labs for TBDs to see if taking 90 days of Abx brought up more antibodies.
I felt dumb asking this doc to do this instead of the LLMD treating me, but what can you do? You have to make due with the resources you have. It's really backwards.
The only real medical issue I know I have is low T and my ID recommended treatment for it, not my LLMD. I started several days ago.
I truly think maybe I have an unknown mitochondrial muscle disorder that medical doctors just aren't smart enough to Dx at this time and not Lyme. Especially since my Dad has similar issues and my 3-year old daughter does too. I'm NOT going to buy the story we were all bit by ticks! lol.
quote:Originally posted by timaca: seekhelp~ It is worth getting tested for other things too. I'm assuming your doctor ran lots of tests to rule out your medical problems. Were these things tested for: HHV-6, EBV, chlamydia pneumonia, mycoplasma pneumonia?
Timaca
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Tracy9
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Don't feel bad about your supplement list; mine is at least twice as long, and I totally agree that I don't think most of them are doing a thing! I'm sicker than ever and will not refill most of them when they run out. The only reason I haven't posted them here yet is I'm too exhausted to type out the whole list. Perhaps I'll copy and paste yours then just add mine!
You know, I agree with you one hundred percent. Your symptoms ARE different than most of us. I do think you shoud seek other opinions, from doctors other than LLDs.
You may have Lyme, but maybe it isn't even really causing you many issues. Maybe it is something else that they are missing.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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luvs2ride
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seekhelp,
I hear your frustration. It is hard to keep doing something if nothing seems to be helping.
I get a newsletter called The Blaylock Wellness Report. Dr Blaylock is a neurosurgeon and a nutritionist.
He says almost all illness has inflammation at its core. So eliminating inflammation will reduce a great deal of the symptoms and allow the medicines to get to the infections.
Some ways to reduce inflammation. 1-diet. A vegan diet (no meat or animal products of any kind) is a great anti-inflammatory diet. Dairy tends to be a common offender and the vegan diet cuts out dairy altogether. Sugar is also inflammatory as is red meat.
I tried a vegan, lowfat diet for 2 weeks and it reduced my arthritic pain by 50%. At the time, I was so crippled in every joint that I was housebound and needed help getting up and down from a chair, etc. So 50% was a huge and welcome improvement.
You could try this for 2 weeks to see if your symptoms improve. If they do, find a doctor trained in nutrition to help you sort through your food allergens.
I am no longer vegan but I did find I have an allergy to dairy and soy proteins. Cutting these out of my diet made a huge impact on my healing. ***milk and soy are found in just about every packaged product***
2-Glutathione. Huge, important detoxifier found natural in our bodies. Studies have shown that elderly people who are healthy have high levels of glutathione and chronically ill people of any age are very low. Without it, toxins build up in our bodies and cause pain, sickness and even death.
Here is a good article about it. IVs of glutathione saved my life literally.
You don't mention any abx. Are you taking any? I believe we all need some in order to fight these infections. Along with the abx, we need to eat nutritiously and supplement to heal our bodies from the abx fallout as well as keeping our immune system up to kill and eliminate this disease.
Finally, it is a long fight. It may seem like you got sick overnight, but more likely these pathogens have been building up in your body for years. It will take years to turn it around but I absolutely believe our bodies can heal and repair if we just give them the right nutrition and treatment.
Working with doctors in the manner described above had me back to work within 6 mths. By 1 yr, I was practically dormant and by 2 yrs I was operating normal again.
Today, it has been 3 yrs. We are still at work eliminating the bacterias which I test positive for, but I am living a normal, painfree life and could forget I am sick but for the fact I take a boatload of supplements, some abx and I eat fanatically well.
I also take glutathione suppositories now which are much more convenient and half the cost of the IVs. I plan to take glutathione for the rest of my life to keep my toxic load low.
Seekhelp. These measures will help you no matter what disease you really have. There is something in your body causing your symptoms. Even if that something is not lyme, it can be defeated.
Please don't forget that.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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david1097
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Some may flame me for this this but in general, if the drug is going to start to work you should see something in a few days. The complication comes if there are multiple infections as teating one may just cause the other to take its place, with or without a corresponding change in the symptoms.
If the drug aren't doing anything on a first go around and you have familial similarities in the symptoms, you might want to take a look at the rare genetic dieseases data base to see if the symptoms match up. There are quite a number of known ones and a familial link is suggestive of this as a cause.
Have you had the CPK isoenzymes tested? This might point to a muscle problem, perhaps genetic in origin. Have you have B-12 levels tested (also a genetic issue)? This can cause odd symptoms at all ages (some lyme like also).
All that being said. some of the LLD's use their own judgement in determining a treatmetn course. In a lot of cases there is a bacterial infection at play but there are no tests (or no reliable tests) for it. If it is treated using empirical methods it works for quite a few but the actual cause may not even be Lyme... unfortunately being mislabled in the process. In this regard, you can spend thousands of dollars doing tests that may not even be targeted to what you actually have or spend a few hundred on some drugs that have a pretty good chance of hitting the target.
if they hit the right combination improvement is usually rapid (certainly after a few weeks) but elimination of the pathogen may not be. It may end up going dormant and appear after drugs are stopped or some other event (such as stress or injury) occur.
As I mentioned, if not done so already, check out the rare diseases and genetic diseases database at the CDC website. Ther are also some other references I can send you if you PM me your email adress.
Don't give up, it is likely something out there will help, it's just a matter of finding it.
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seekhelp
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Thank you everyone for the kind / thoughtful responses and ideas.
I am on Abx and anti-malarial drugs:
- Ceftin 500 mg 2x day - Biaxin 500 mg 2x day - Malarone 250/100 mg 1xd
I did mono Zith for 2 months and it did little. I moved to Omnicef / Zith for two weeks and I seemed to herx a bit more 7-10 days in. I moved to Ceftin /Biaxin because my ID said Zith / Omnicef was a useless protocol for Lyme in his clinical experience. The drive to my LLMD is very far and I just can't make monthly visits during the winter since I'm unable to drive those distances and need a ride. I lost some faith in my LLMD's protocols too when I was asked if I thought I still had Babesia at my last visit. Doctors don't ask patients, they tell them if they do or not.
I have been through the most extensive neuromuscular testing possible this year. In fact, TWO muscle biopsies in 2008 and one at Cleveland Clinic. Not one piece of evidence showed up that I had a neuromuscular disorder. However, the top doc in the country stated mitochondrial research is in it's infancy and he just knows some patients have it but he can't prove it. It's a moot point because there are no cures.
Regarding other specialists over the years, I've seen:
Pulmonary Neurology Nephrology Endocrinology Rheumatology ID Hematology ENT Urolology Neurontology * Many, many others - basically all - maybe I should've seen psychiatrists - lol.
It's staggering one could go from a high intensity consulting job to homebound in a month without something major hitting them. My original onset of probalems in Sep-07 was more diverse: chills, terrible fatigue, terrible hot flashes, unsteadiness, head pressure, head & face tingling, arm heaviness, shortness of breath, and other symptoms. I was too weak to barely walk many days. Maybe panic disorder hit me for weeks on end?
I just ask myself every day, how? What happened ? Why can't I get the upper hand on this?
THE ONE THING I haven't addressed throughout all this is diet. I have not been as strict as many of you. I know in my heart that's a huge issue. It's been such a devastating thing mentally that I'm losing motivation. I feel so bad not working, taking care of my family, etc. It's a spiral.
I've seen and heard so many that took Abx for Lyme and didn't pay special attention to their diets as much. All friends / family members I know say the person got some IV Abx and boom cured quickly. They look at me like a quack when I give them these Lymenet stories. I'm NOT knocking members..just expressing my experiences.
I watched my Dad suffer 30 years with this muscle tightness. That will never get out of my head and makes me doubt my Lyme Dx. We were not outdoors people when I was younger (i.e., camping, hiking, etc.) so what really are the odds we both have it?
I go into my LLMD office and see endless husband / wife saying they both have Lyme Dxed by the LLMD. Sometimes, I just shake my head. Is it really that likely? That said, my wife doesn't have it (thank gosh) and we've been married 5+ years. I pray it remains that way. It just makes me question LLMD's mentality and ease of making these clinical Dx. I try to put everything in perspective and note who benefits from the diagnoses made.
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david1097
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Don't forget that an underlying illness can have other more acute illnesses piled on. This might account for the september ilnnes that you mention. It could easily have been a flu bug or something.
A quick question, have you tried a short course of any steriods to see if you are dealing with an inflamatory condition. If it does not help then that can rule out a whole bunch of things... ( I would even go so far as to say that lyme is one of them depending on the the symtoms that is alleviated). Unfortunaltey the Dr can't tell if the babesia has cleared up jut by looking at you, Lyme to a certain degree yes but not babesia. He has to go by the symptoms.
I don't think the Lyme Dr's are financialy motivated. Some may be motivated by ego and the desire to make people better but there are a lot of other medical specialties that pay a lot more and are much lower risk (and that are in demand also).
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seekhelp
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David,
I have not tried steroids because the messages on this board scared me half to death in case it's Lyme. Thats the kicker. Steroids "could" help my muscle tension, but I insist doctors don't do them in case I have Lyme.
I guess no one here would ever recommend steroids for MS patients because well MS is Lyme, as well as 10-20 other incurable diseases. When you think it's all Lyme, you've effectively ruled out all other possible treatment options.
If I'm wrong and steroids exaggerates the symptoms, I may be very sorry. it's like rolling the dice, huh?
Regarding Babesia, I agree. My LLMD makes me fill out a symptoms list every time to see if things changed, improved, or worsened. I would think based on these responses, one could deduce if Babesia went away. if not, it's a useless attempt st treating any of these illnesses because there is no endpoint.
Considering the Babesia treatment recommended was 4 tablets of Malarone for 3 days for the entire month, my gut feeling is I didn't get rid of it. At least, this is true if I take all the Lymenet memebers' experience into consideration.
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david1097
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Despite the bad experiences of some here (those that had taken lots of steriods prior to a diagnosis particularly) steriods are NOT as bad as they say if taken with ABX or for short term. I use them in cases where I MUST do something like important meetings, seminar presentation or if I present papers at conferences. There have be studies that show that seriods do not affect the efficacy of antibiotics being taken for lyme and some Dr's prescribe prednisone to be taken with the abx if severe die off reactions are expected.
If it was me I would give it a try (this is how I figured out I had an infectious disease rather than an autoimmune one). Symptoms cleared up but came back worse than before the trial. The trick with the stuff is not to take it for a long time. In this case you are trying to see the effect over a few days. If no effect then rule out a bunch of things and look at things like neurological disease or genetic issue. If it helps, then you can start down the other road and focus on a few things at a time depedning on what the steroid did.
I agree with you on some of the treatments that people are getting. I am convinced that some do not have lyme, but in quite a few cases abx does help. Same with babesia. If you have it it WILL show up in the slides but yu might have to look for a long time. There are however some things that will respond to antibabesia also (an example pneumocistis carini lung infection common in AIDS - a microsporidia ~ i think) and the babesia treatment might be hitting these types of protozoal infections, many for which there are no test for.
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david1097
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Forgot to mention. malrone did little for me. one tablet of Mefloquinine (larium) on the other hand wiped out high paresitemia in 5 days. After that it goes subclinical but pops up periodially, after which I take another larium tablet and it gets kncked down again.
Posts: 1184 | From north america | Registered: Feb 2003
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I can't say with certainty whether or not you have Lyme. I do know you show many more bands than my husband does.
A couple of comments and suggestions.
Do you remember your dreams? If not, you may be deficient in vitamin B 6. 50 mg of B complex is a very low dose. You could try adding 50 mg of p-5-p (pridoxal 5 phosphate). That is the activated form of B 6. You need B 6 to help absorb or use magnesium -- I always forget which it is. If you add in B 6 by itself you also need to continue the B complex.
The goal is to increase the B6 dose until you remember your dreams -- too vivid dreams is too high a dose. Spread the dose out over the day as B6 is not stored in the body.
You could also try skipping the calcium for a couple of weeks -- it could be competing with the magnesium for absorption.
And of course there are always epsom salts baths -- your body will only absorb as much magnesium as it needs from the water. Hubby uses 2 cups of baking soda and 3 cups of epsom salts -- if you have not done this before it would be best to start with maybe 1/2 cup of each to make sure you don't have any negative reactions.
I know you don't want to take more meds, but Ativan works for many Lymies for muscle spasms.
Hubby has attacks of muscle rigors or dystonia. His episodes always start with tremors and myoclonus (muscle jerks). Depending on how treatment is going it might be 5 minutes or it might be several hours before his muscles freeze up.
Usually it is his upper body (primarily his right arm and left leg are the worst), but other times his entire body locks up and I can't even move his muscles. Or other times I can move them a little and then they freeze into whatever position I move them into.
If I do not give him meds he could stay frozen for hours -- has happened in the ER and hospitals several times. I think it was the Baclofen that hubby tried once and only once -- made things ten times worse for him.
One neurologist saw hubby in the hospital last year and said a problem with just one part of the brain could not cause his attacks. Hubby's SPECT scan shows hypoperfusion of his entire brain.
Until recently hubby never had much problem with headaches. He would talk about his brain feeling swollen or head pressure, but the pain was minimal. He had a moderate attack in the LLMD's office at his last appointment -- the docs conclusion was that hubby's freezing up spells or dystonia were a result of decreased oxygen to the brain.
The LLMD prescribed a very low dose of Benicar which is a blood pressure med that works by acting as a vasodilator -- relaxes the blood vessels in the brain and allows increased blood flow. Hubby has had very few tremors and no freezing up spells in a couple of weeks now since starting that med.
Treatments for Babesia and Bartonella have each helped stop these spells for several months at a time over the years, but then they come back and we retreat and they go away again. Lyme treatments -- even IV -- have had very little effect on these symptoms for hubby.
The symptom control meds that have worked for hubby's tremors/myoclonus/seizure-like episodes over the years have changed. Used to use IV Ativan -- quit working. Then used IV Dilantin -- a pain med even though he wasn't in pain -- the ER docs suggested this -- has anti-inflammatory properties. Now uses IV Benadryl for mild attacks -- a very mild anticholinergic which slows muscle spasms.
When things were bad hubby would have 2 or 3 of these attacks daily. I would medicate him and massage his muscles and things would resolve within half an hour or so. At his worst hubby was tested for stiff-man syndrome.
Acetylcholine makes your muscles move and dopamine is the brakes which make them stop moving. Usually tremors are caused by a shortage of dopamine, but they can also be caused by a shortage of acetylcholine. However, if there is nerve damage from Lyme or mercury or something else then the signals can get messed up as well.
Both Lyme and Babesia rob the body of choline. The best natural source of choline is egg yolks -- you get much more choline from an egg if you eat only the yolk and not the white -- a doc told hubby to eat 3 egg yolks per day.
Hubby has done small quantities of IV phosphatidylcholine (the P.K. protocol)-- was helpful, but way too expensive to continue. The best oral phosphatidylcholine supplement comes from the website below. At 1 tablespoon daily a bottle lasts one month. Also pricey, but helpful.
These are just a few things to think about. This is not medical advice, just my opinion based on hubby's symptoms.
Bea Seibert
P.S. Just don't forget that you could be dealing with both Lyme or another tickborne illness and also an underlying genetic muscular disorder. I feel like Lyme especially attacks a person's weakest system. It doesn't have to be one or both -- it could be 2 different illnesses.
Hubby's primary symptoms are G.I. related and neurological -- he had mercury toxicity before the tickborne illnesses.
Do you have a cat? Maybe your family could all be dealing with bart or mycoplasma or BLO?
Not sure if lead poisoning could present like this or not. Might be worth testing for heavy metals such as lead and mercury.
Keep searching. You will get to the bottom of this illness.
[ 24. November 2008, 11:59 PM: Message edited by: seibertneurolyme ]
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I haven't read all the posts on this thread, but I'm convinced that most Drs (LLMDs) are underdosing the antibiotics we're given. They're prescribing doses that are generally accepted as proper doses for other infections, and Lyme is not your typical infection.
Personal experience showed me that 3 Bicillin shots/week helped much more than 1 shot/week. Now I'm taking 600mg Doxycycline/day instead of 300mg, Tindamax 3x/day instead of 2x/day, and 6 teaspoonsful of Mepron instead of 4, and can really feel the difference.
The increase in doses of Doxy, Tini, and Mepron just happened within the last week-3 weeks, and I'm really feeling a lot better. The herxes were stronger too, but are now lessening in intensity and I'm feeling much better.
If you can handle the herx, I'd be as aggresive as possible. Just my opinion.
Patti
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timaca
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seekhelp~
You are wise to seek answers from as many people as you can. The fact that you and your dad both have this problem means there could be a genetic component to it (you are both susceptible to whatever the problem is---pathogenic or other).
I would stay away from the LLMD that does no testing. What??? Many things give the same symptoms as lyme, including other viral and bacterial pathogens.
Get copies of those tests that the ID doctor ran. He may not be aware that high IgG antibody titers may indicate active, chronic infection. He may be looking at IgM titers only as indicating active infection.
Your onset of symptoms with chills, fatigue, etc points to an infectious etiology. Were you in the country at the time? Had you been out of the country? I'd have another visit with the ID doctor, get a hold of the test results, and make sure you were tested for the tests I mentioned above. I'd also add in enterovirus to those tests. I'd also ask the ID doctor to put on his thinking cap and come up with some tests...
Best, Timaca
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seekhelp
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Thanks for the reply. First, I never remember any dreams at least 95% of the time. I don't dream much at all. I thought too much B-6 was dangerous and could cause irreversible or scary neuro symptoms? I believe that's a much higher dose than 100-150 mg of B-6 a day though. Am I right?
I've never taken P-5-P as I never heard of it. Where do you get it?
I tried making a homemade Epsom salt / water spray. I'm testing it. I'm thinking of magnesium oil, but I want to hear some testimonials from others first. It's expensive. I've never tried the baths before. I'm wondering if some people respond poorly to them?
I don't find Baclofen to hurt me, but it's not the silver bullet either. It doesn't seem strong enough for what I'm dealing with. I don't think my issue is as severe as your husnand's. I'm sorry to hear of all the issues. I hope one of the treatment protocols is finally a break through for him so he can get out of this misery.
My SPECT scan was perfectly normal I'm told. I too get the head pressure you're referring to though.
I've tested for heavy metals every way but a provoked urine challenge. All others are totally normal.
We did have a cat for many, many years growing up and I had two for another 7 years when I moved out. They were indoor cats only.
I did have a very high Toxoplasma Gondii IgG reading, but my ID doc said it's nothing and a past issue. I had no IgM response.
[QUOTE]Originally posted by seibertneurolyme: [QB] Seekhelp,
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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I am extremely diligent about getting copies of every single test result done on me. I learned that a long time ago. it's critical.
I personally do like my LLMD but I agree with your advice. I don't feel not testing is a reasonable approach to care. I find it dangerous and irresponsible, especially if your Rxing long-term antibiotics. I don't know why any others find if acceptable at all honestly. The problem is there are NO choices for LLMDs where I live. ZERO.
I have not been out of the county. I did get very sick in Arizona in Feb-07 for an unknown reason, but I thought I recovered eventually. My health was always poor since that incident the more I think of it. I haven't been out of the contry for 16-17 years.
quote:Originally posted by timaca: seekhelp~
You are wise to seek answers from as many people as you can. The fact that you and your dad both have this problem means there could be a genetic component to it (you are both susceptible to whatever the problem is---pathogenic or other).
I would stay away from the LLMD that does no testing. What??? Many things give the same symptoms as lyme, including other viral and bacterial pathogens.
Get copies of those tests that the ID doctor ran. He may not be aware that high IgG antibody titers may indicate active, chronic infection. He may be looking at IgM titers only as indicating active infection.
Your onset of symptoms with chills, fatigue, etc points to an infectious etiology. Were you in the country at the time? Had you been out of the country? I'd have another visit with the ID doctor, get a hold of the test results, and make sure you were tested for the tests I mentioned above. I'd also add in enterovirus to those tests. I'd also ask the ID doctor to put on his thinking cap and come up with some tests...
Best, Timaca
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Try getting a NCS/EMG by a knowledgeable neurologist... I did and have CIDP which requires IVIg ... I am waiting for approval...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I disagree with psano. I think that most LLMD's over medicate. My LLMD has cured many ppl with lower doses. I think if you take too many meds it affects you body's own ability to help in the fight against infection.
And besides most ppl can't stay on large doses anyway. Eventually it gets the best of them. Lower doses just makes more sense to me.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I have similar symptoms of muscle spasticity mainly in my legs and arms (although sometimes in my stomach).
I'm taking Baclofen, and it helps somewhat.
My neurologist was sure I had MS but my MRI's were normal.
I'm assuming you've had an MRI to check for MS.
I did recently test positive Lyme (Multiplex PCR test)and I did test positive for Babesia.
However, my primary care physician does not beleive the PCR test is accurate, and that I don't have Lyme but a neurodegenerative disease.
Although, he can't say which ND disease.
I haven't started treating (IV Rocephin)because of insurance issues, hopefully will soon.
My LLMD told me that neuro lyme should be treated with IV Rocephin for at least 3-6 months.
Have you been treated with IV Rocephin?
Posts: 10 | From MA | Registered: Sep 2008
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Hi there. Im sorry your suffering. If youve read any of my posts lately, you know I am suffering bad now too.
I have family memebers who have lyme disease-cousins, uncles, etc. Also, my husband tested positive for Lyme. Yes, it can be trasmitted so if you have it it is possible you could have gotten it from your father. My husand underwent early treatment and is now fine. My kids have been tested and they are all fine.
You really need to make sure everything else is ruled out first. Once that happens you may be more willing to accept a Lyme disease diagnosis.
Have you tried plain old flexeril for muscle relaxants? what about valium? Yes valium can work wonders on muscle spasms. I take flexeril every night cuz without it my muscles tense way, way up.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hmmm. Since you don't know what you have but it runs in the family--how about a trial of IVIG? It works on neuro/muscular disorders without having to know the pathogen. Seems like this disorder merits IVIG.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
You really haven't been treating for very long. I'm at three and a half years and am just now starting to see improvements.
Make sure you treat all co-infections too. I wouldn't be to quick to stop treatment.
I think it takes longer for treatment the longer you've been sick and also how sick you are.
I was sick 19 years before treatment, and pretty much house bound and in a wheelchair.
It does amaze me too the range of sickness we all have. If I could jog, walk a long distance, or travel I would consider myself cured.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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jamescase20
Unregistered
posted
Your probly right.
I have a scope and been watching my blood for months now.
I found out that without the scope I was losing the battle. It was only until I started to check my bloods daily for pathogens that I learned which drugs/alt treatments work, and which dont.
I urge you to consider ozone treatments, namely ozone saunas (enaly.com sells CHEAP ozone generators) I made a quick sauna out of a garbage can and a cardboard lid with a hole to stick my head out...used a blow dryer for the heat. If not that, ozonated water, but not bottled ozone water, FRESHLY bubbled ozonated water made on the spot at home.
Enaly sells a 500mg ozone per hour, usable for water, OR air for about 100 bucks!
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posted
Don't know if this is worth a mention - clindamycin oral antibiotic reduced my muscle pain and tightness.
I did 150mg 4x/day and could tell a difference starting in three days, and then by the end of a week, no more muscle tightness and pain.
Posts: 13117 | From San Francisco | Registered: May 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
seekhelp~
I would seriously consider toxoplasmosis as part of your problem. A very high IgG reading could mean active chronic infection.
I don't know how close you live to Stanford Medical Center in Palo Alto, CA...but if you live anywhere near and if you could see Dr. Montoya, that is one of his specialties.
Private message me if you want the phone number of the ID clinic at Stanford. He knows this stuff. It sure would be worth your investigating this angle.....
If you google "Montoya toxoplasmosis" you'll come up with lots to read.
Bless his heart, he is an awesome person, and he cares greatly for the toxoplasmosis patient.
Best, Timaca
[ 25. November 2008, 10:06 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's another link for you. Maybe your ID doctor can call this lab and speak with Dr. Montoya about what tests to order in order to rule in or out toxoplasmosis infection (chronic). This link says he is available for consults.
I clicked on this discussion because I have been on treatment for about 3 months, without improvement, and don't feel any better. I am a physician, and I am getting frustrated and starting to second guess the science that I know to be true. I have been sick for over 20 years, so I know that it is ridiculous to think that I could be cured in the blink of an eye when compared to the length of my infection. I had been tested over the years and was always told I was negative, after my initial positive diagnosis as a teen, followed by 3 weeks of doxy (of course, without relief). But, when my IGeneX PCR was positive, I knew I was vondicated. I knew there was something wrong, and for so long, I thought it to be Lyme. It is my opinion that you need that same vindication, if it is to be yours to have. If it's Lyme, it is actually GREAT to have a piece of paper that says so.
You might want to consider trying magnesium malate (not so easy to find). I have suffered with severe pedal spasms for years. After about 2 weeks of taking this kind of magnesium, they haven't spasmed at all. I am still the least limber person I have ever met, but at least I haven't had the agony of my feet tightening to the point of torture.
I am not a fan of supplements and crazy treatment suggestions. I try to read the basic science and if something makes sense, I will take a leap of faith. But, for those of you who are not physicians or scientists, it has to be frustrating (and expensive).
I don't know what the answer is, but I am looking, as are all of you. Sharing is good. It will help us all find the answer faster, if there is one to be found.
Posts: 8 | From New York | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Asked: "What in the world is tightening these muscles SO SO much?"
Toxicity will certainly do that. Magnesium depletion, too.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
it's hard to respond to everyone individually, but thanks. For background, I have had the following neurological tests ran and all are normal:
- Muscle biopsy - 3 times including comprehensive deep muscle one at a premier teaching institute
- MRI brain with and without contrast - 4 times in 10 years
- Catscan brain - 5+ times in 10 years
- EEG (2 times)
- VENG (2 times)
- EMG / NCS (7 times in 10 years)
- Brain SPECT scan
Basically, every testr known to man except a MRA or a PET Scan.
The only thing that shows up on the EMG is carpel tunnel in both wrists.
There are just no marker signs of inflammation: no elevated CPK, C3, C4, RF, ESR, etc. My ANA is always borderline speckled at 1:160. Rheumatologists say it's meaningless. I've ruled out Lupus, MS, MD, Fibto, CFS, Myesthenia Gravis, and endless other conditions.
Fun situation to be in, huh? It's especially disturbing when the same condition put your father out of work at age 50. Scary.
How in the world would you get IVIG with zero abnormalities? Isn't it $15k?
I thought 30-50% of the general population has a IgG reaction for Toxoplasma Gondii? My IgM is not elevated at all.
Magnesium sounds good, but it can't be proven. RBC Mg levels are high actually. I know Mg is only 2% in blood and 98% in cells.
I sometimes want to just chalk this up to muscle tension due to sitting at the computer for years, but why are so many others not having this issue and needing to pop muscle relaxers? Why are my leg muscles spasming while the neck and jaw is? It's not concentrated to one group of muscles. That's a wake-up call.
All mitochondrial / metabolic myopathies have been ruled out (basically all forms of Muscular Dystrophy).
Keebler, toxicity from what? Nothing shows up. Heavy metals are normal, but I didn't do a provoked urine challenge.
An interesting note for one poster: Clindamycin hits Toxoplasma infections..hmmmm.
I thought Lyme was transmitted from mother to fetus (controversial). If my Dad has it, that doesn't make sense. My Mom has no health issues like ours. Is that really congenital?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I forgot to mention I have been gluten / dairy-free since Aug-08. I notice immediate increase in muscle tightness, especially in my neck, after eating tomato products, chili peppers, salsa, etc. Hmmm.. It happens in 5 minutes or less My IgG food testing showed no reactions to these foods. Dr. Joseph Tetelbaum says IgG food testing is pure hogwash. He says rely on IgE reactions only.
I think maybe I hit the nail on the head. Avoid nightshades. Something I've never done in my life. I am a HUGE consumer of hot peppers. I grow hundreds of varieties per year. Tons of salsa too. Hmmmmmm....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Shosty
Unregistered
posted
Everything I was going to write has been covered, especially by your most recent posts.
I am in a similar situation, like others here I'm sure.
Small thing: I was told to switch to magnesium glycinate, for muscle problems, not the citrate. I buy a very pure product made by Vital ingredients.
I also experience immediate symptoms w/certain foods. This leads me to believe that inflammation- whatever the cause- is at the root of the problem.
I don't see any MRI of the spine done for you. If you have any bulging discs or indentations of your spinal canal, it can cause muscle spasms, believe it or not.
I don't know if you are female, but you might also want to check hormonal balance-? Is your adrenal function okay? Did you say your thyroid is being treated? Is that helping at all?
Then again, if it is your father who has the same issue, hormones would be an unlikely culprit.
As for "congenital," it seems that this could be a genetic problem, since it runs in the family. This is different from something passed in utero, obviously.
This sounds like one of those problems with which there is always the tantalizing prospect of a magic answer that some brilliant doctor will figure out, that is so far being missed.
But, it might be easier on you to tell yourself that you are going to tolerate the mystery and uncertainty for a while, and just do practical things that can work around the edges of the problem, so to speak.
Doing antibiotics for at least 18 months seems like a good idea. I did antibiotics for 6 years, and have been off for two. I would say the first year and a half helped a lot, but after that, I wish I had gotten off earlier.
One other thing: have you visited a chiropractor. A good one can be helpful diagnostically, even if there is no really effective treatment that holds.
I felt reassured when the chiropractor released muscles in my neck and my left arm, which is drastically shorter than my right due to the muscle tension, briefly returned to normal! It didn't stay, but at least I knew that my arm was not permanently withered.
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seekhelp
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Member # 15067
posted
I've had multiple MRIs of the cervical and lumbar region. I have bulging discs throughout C4-T1 and a herniated disc in the L4-L5. I also have a few other bulging discs in the lumbar too. Since I have never even been told of results by my doctors after these MRIs, I assume they don't think much of it.
I had a thoracic MRI back in 2001. It was normal. None were done since that. Chest MRI was normal too in 2007.
I am male. Thyroid is normal (TSH 2.0-3.0). Free T3 and T4 within normal ranges. My testosterone free and total is quite low and I'm treating. I started 4 days ago.
I do chiropractic sometimes, but I don't believe in it much. I do go t a LL chiro a few times, which helps marginally. No one can say why the spasms return with such a vengeance so fast. Nothing is long-lasting at all.
I agree there is no magic answer or brilliant doctor. I do try to address symptoms, but so far I've failed miserably as I've been off work for 13 months and suffering every day.
I wish SO bad I could find Mg Glycinate in a powder or liquid form. I can't ingest that many horse-type pills without choking. I've had some issues swallowing large tablets / pills now for 3-4 months due to throat tightness. I've looked EVERYWHERE and can't find it in any other form.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Shosty
Unregistered
posted
I just found it in capsules, which can be opened and then you could take it as a powder.
I found it in a compounding pharmacy, on the retail shelf. It is made by Vital Nutrients in Middletown, Ct., and has no allergens, very pure.
The spinal angle might give some answers. I went to a rehab MD who explained that muscle weakness can have its source w/the spine. But not muscle tension, I guess.
I had the bulging a few years back, but it has now progressed to indenting the spinal canal in 3 places. The rehab doc said some people with MRI's that are not too bad, have worse symptoms than those w/MRI's that are much worse. He said they don't know why, but it is an accepted reality in rehab medicine.
Doesn't sound like that is the answer, but still, it is interesting that you do have some seemingly "minor" stuff going on w/your C and T spines.
You have had pretty full work-ups all around. This is very frustrating, esp. after all the effort that has gone in to figuring it out.
I'm sorry you are dealing with this, and that your father did too. Take care.
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oxygenbabe
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posted
IVIG can be given for neurological conditions. See a neurologist.
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